Chase McGowen's
Transplant and Medical Information Web Site

 

Updates From Carol...

 

Wednesday, March 17, 2010  2:12 PM CDT

Happy St. Patrick’s Day


Chase’s 3 month post transplant review and evaluation is finished and we are waiting for the results of the bronchoscopy and lung biopsy.  The chest x-ray showed a bit of fluid on both the right and left sides of his lungs.  Dr. Mallory adjusted Chase’s medication and we think this will take care of the problem.  The numerous tests and appointments were taxing to everyone involved.  Thank GOD this is spring break and Tara is here to provide additional assistance.  I am dreading next week when the nursing authorization expires.  We can only pray that Chase will continue to improve and that self sufficiency is in not far behind.  I was dreading the bronch yesterday. Having both Tara and “Grandma Ann” one of our day nurses with us helped ease my apprehensions. 

Chase has another IVIG infusion and two iron infusions next week.  In the past these infusions have helped tremendously and he felt better in just a few days.  I am hoping that the IVIG will also help with the BK virus.  The treatment last week did not provide as much relief as the first.  We are keeping our fingers crossed.  He is still in a great deal of constant pain.  I can’t imagine!  Hurting 24/7 for weeks on end has to also create problems with every aspect of life.  When the wheelchair hits even the slightest bump the pain intensifies dramatically.  Hitting the bumps and or potholes in the car is another problem all together. If you have ever driven down Montrose or Main streets in Downtown Houston you know that avoiding them is simply not an option. 

The weather is beautiful, the flowers are blooming and signs of spring are all around.  I am confident but constantly prayerful that the results will show no signs of rejection. 

We are wishing you a very Happy St. Patrick’s Day and a safe Spring Break 2010!


Always,

Carol


BEST NEWS YET...NO SIGN OF REJECTION!!!
THANK GOD!!!

 

Friday, March 12, 2010 2:00 PM, CST

KITCHEN PASS…

I don’t know exactly what that means but I think Chase got one!?

Chase had labs early yesterday followed by the BEST pulmonary function tests he has had in years. If you can believe it - he has even gotten taller in the past few weeks and his weight is slowly increasing. Chase's creatine level was actually normal!! Dr. Mallory was extremely pleased with everything and he said Chase could visit Austin for the weekend. 
What a miracle!!

The Divine power of GOD is the only explanation.  

Thanks to Grandma (McGowen) , my wonderful sister-in-law Sherry and our nurse Vivian, we “quickly” packed the suburban with little room to spare.  You can’t imagine how much stuff is necessary for a few nights in Austin.  With all of the oral medications, the IV medications as well as the basic essentials the suburban was full.  On the way home I called Tom to let him know that I would not be doing the unpacking.  (I helped a little, but I chose the easier task of starting the TPN IV)  The trip went well.  I think Chase was a bit apprehensive driving out of town.  Considering the events of the past year I am sure it was a little scary venturing this far away from the hospital for the first time.  Chase was a bit sore/ stiff from the ride but he was so
happy to be home.

We were able to enjoy visiting with neighbors and friends at our favorite local Mexican food restaurant, Jardin.  Boy have we missed their wonderful food.

We will celebrate Casey’s 17th birthday tomorrow with family and friends at one of Chase and Casey’s favorite restaurants – Pluckers. YES – everything is revolving around eating.  We will do just about anything to get some extra pounds on Chase.  Tara and Garrett should be here this afternoon.  The joy of having all of my children home is the biggest blessing and something I do not take for granted. 

Not sure what else the weekend will have in store for us but just being home is wonderful. Chase is enjoying sitting outside in the sun visiting with his friend Logan.  This is the first time he has been able to sit in the sun since he was discharge from the hospital in late September.  I think the fresh air and sunshine will do him a world of good.  I think all of the boys will be home this weekend and I hope Chase will have a chance to see them all.  These are some of the most amazing kids I have ever met.  Chase is lucky to have them as friends.  I know Chase is especially looking forward to seeing Joe.  He will be coming home from West Point this evening. I’m not sure that Chase knows when he will be here so maybe Joe will be able to surprise him.
  Chase is still experiencing a fair amount of pain associated with the BK virus. He will have more lab work next week along with his three month post transplant review and evaluation.  It may be necessary to give him another IVIG and iron infusion.  These will both be done outpatient later next week.  The IVIG infusion should also help his body with the BK virus.

Last night Chase and I had a long conversation before we went to bed.  I told him I seriously doubted I would ever bring him home.  I was eternally hopeful but extremely fearful that he would not survive this journey.  As I watched him day after day fight for every breath he took I was constantly amazed by his strength and stamina.  His faith brought him full circle and we are thankful beyond belief that Chase is here with us today.  There are no words to fully describe the full scope of my emotions.  I watched Chase suffer for months and months unable to do anything that would help my child.  The not knowing was beyond awful but I never lost my belief that GOD was in control.  I had to constantly remind myself… “THY WILL BE DONE”

I asked GOD to “BLESS CHASE INDEED!!”  

GOD BLESSED US ALL – INDEED!!

Have a very safe and blessed Spring Break!

 

Wednesday, March 10, 2010  9:44 PM, CST

The procedure went well today!!!  We were home about 2:30 this afternoon.  Chase is still experiencing more pain that I had hoped but we will continue to be positive and pray that this will eliminate the BK virus – SOON!!!

We have appointments early tomorrow morning.   We are hoping that Dr. Mallory will give us the green light to return to Austin for the weekend.  We can’t get too excited yet… considering the way things go around here we can just keep our fingers crossed.

I can’t thank our nurse Phillomia enough for being here tonight.  Now I get to sleep!!

 

Tuesday, March 9, 2010  7:47 PM, CST

Labs looked great today!   Chase really impressed Robin, the Physical Therapist this morning.  He had an amazing workout.  He is still a bit wobbly on his feet and the balance is taking a little longer to come back but we are very thankful for the progress he has made the past few weeks.

Tomorrow the next round of treatment is scheduled OUTPATIENT!  SEE – once again… GOD does listen to our prayers. I pushed the doctors to let us care for him here.  We are close enough to TCH that in the event of an emergency we could be there in 5 minutes.    Our wonderful Children’s Home Care night nurse Phillomia was not scheduled to be here on Wednesday night.  Due to the circumstances she agreed to come tomorrow to provide the nursing care Chase will require.  Now… let’s pray that things go smoothly and that there are no complications.  He had a bit more pain late this afternoon.  The procedure tomorrow should help with the pain and hopefully he will be virus free in the near future.

The weather was beautiful this afternoon.  We can only hope that the weather in Austin will not be as crazy as Spring Break 2009.  I think that hail storm will be remembered for MANY years to come. Regardless, it will be wonderful to have a few days to rest and relax in OUR HOME.  There are still wedding plans that need to be finalized and I just can’t believe how fast May 20th is approaching.  After the year that the McGowen family has had – the celebration of Tara and Garrett’s wedding will be a perfect new beginning for us all.

Carol


Monday, March 8, 2010  10:34 PM, CST

RELIEF!!!

Chase is feeling better!  Not wonderful by any means but better! Any step in the right direction is still progress!!  He was discharged late Saturday afternoon.  We all slept a great deal yesterday.  They are trying to get the next round of treatment scheduled and we will keep our fingers crossed that they will agree to do it outpatient.  It is just easier to take care of him here where we have amazing homecare nurses that know him.  While we think Chase's doctors hung the moon and the stars, it is VERY difficult when we are dealing with new caregivers.  Chase is just a very complicated patient and it is more difficult trying to explain to new nurses.  If admission is required I PRAY they will see fit to admit him to PCU – these nurses know him and the entire situation runs much more smoothly.

He has lab work tomorrow and then Physical Therapy. We can only hope they will call and tell us they can fit him in early Wednesday.  Chase’s HUGE goal was trying to make it home to Austin for two nights for Casey’s 17th birthday.  I pray that everything will run smoothly so that this dream can actually be a reality.  Next Monday starts the three month review and evaluation. THREE MONTHS? REALLY??  This will involve another bronchoscopy and I know I am a little apprehensive.  The last one sent him to ICU for a week.  BUT, he is physically doing so much better at this point I truly believe there is nothing to be concerned about.  The several days of testing will be tiring but considering where we were a year ago… we are not complaining,
WE ARE BLESSED INDEED!

Thank you for all the prayers!  We would not make it without your love and support.

The ENTIRE McGowen Family


Friday, March 5, 2010  5:54 PM, CST

PROCEDURE DONE!

Chase is in a HUGE amount of pain. Everything went smoothly and we all expected this to be a difficult process.  We hope to see positive results in the very near future.  The plan is to repeat everything at some point next week.  Discharge back to the Houston house hopefully mid day tomorrow.  Future plans hinge on the next 24 hours.

Thanks for the continued prayers.

 

Thursday, March 4, 2010  6:33 PM, CST

We are waiting, and waiting and still waiting!

None of this comes as a complete surprise.  This is not a common procedure and just getting the protocol straight is a challenge.  Chase was admitted last night to Texas Children’s Hospital 12th floor.  The hospital is full so admission to the PCU was not possible.

Chase is in a tremendous amount of pain and we are very hopeful that they will be able to get this procedure done tomorrow.  He needs some relief.  As much as it breaks my heart to see him in such pain, the fact that this is not life threatening makes this much easier to handle.  Considering where we have been
the past year this is just a major inconvenience but certainly understandable.

We have been told that they are going to try to get this done first thing in the morning.  They expect to keep him here for a few days to monitor his situation.  I agree, we simply can’t be too careful at this point. As of now they plan to repeat this entire process again next week.

I pray that everything goes smoothly tomorrow and as pain free as possible.  First and foremost I pray that this will successfully remove the BK virus and that then Chase can truly focus on the healing rehabilitation process.

 

Tuesday, March 2, 2010  10:20 PM, CST

Faith

I walk by faith, not by sight.

Today I stand firmly in my faith. I meet life courageously and confidently, seeing beyond appearances to the underlying good. Through faith I overcome every limitation. I know that God's power in me is greater than any situation I may have to meet or overcome; God is greater than any condition or circumstance.

Through faith I am fearless and free. Faith dispels fear, for faith knows the nothingness of fear. Faith reminds me that God is the only presence and power in my life.

Through faith I am steady and strong. I am assured that with God there is always a way, with God there are always right answers.

Through faith I walk in the light. I am shown the way of my highest good. I am healed. I am blessed.

We walk by faith, not by sight.--2 Corinthians 5:7

We have had doctor / physical therapy visits every day this week.  Chase is scheduled for a hospital admission on Thursday and a procedure planned for early that morning.  The hope is that this will drastically help with the bladder / urinary tract pain caused by the BK virus.  They are expecting this to be extremely painful and the need for IV pain medication requires at least a 24 hour observation period after they complete the process.  We expect to repeat this again next week and again in about 30 days.  This is not a common procedure so the exact protocol is being created by the wonderful doctors at Texas Children’s Hospital.  We are extremely thankful to have the best doctors in the world taking care of Chase.   PLEASE PRAY THAT THIS PROCEDURE WORKS AND THAT THE PAIN IN FAR LESS THAN THE DOCTORS ARE EXPECTING.

Thank You,

Carol

 

Monday, February 22, 2010 10:20 PM, CST

WOW time does fly when you’re having fun.  Or just simply tired and exhausted.  Progress and healing obviously require lots of rest and sleep. I can’t explain why I too needed the extra sleep but I have been equally wiped out.   The past couple of weeks have been filled with daily trips to Texas Children’s Hospital for labs, pulmonary function tests, clinic and physical therapy appointments as well as a visit to the outpatient infusion center.   I am happy to report that Chase is making HUGE progress!!  A little over a week ago Chase had a very rough 24 hour span. We were all extremely concerned.   Dr. Mallory warned us to expect the gunk Chase would be coughing up but none of us even remotely expected anything comparable to what he produced.  OH MY!  After that day Chase made an about face and he is looking great.  I believe the IVIG and Lasix infusions have contributed to this 180 degree turn around.  Chase’s pulmonary function tests are getting better each day.  In addition to the clinic visit PFT’s he is now doing them at home with his personal PFT machine.  This is essential to monitor his daily lung function to catch any problems in the beginning.   PTF’s at clinic this morning were the best they have EVER been!   These lungs are doing amazingly well.

Chase’s physical ability has continued to improve as well.  His Physical Therapists are please with his progress.   He is still unstable on his feet and his ability to walk any significant distance is still limited but I see improvements on a daily basis.

The BK virus continues to be an area of great concern.  It is causing a substantial amount of pain during the urination process. At this point the pain is excruciating and is not limited to the time of elimination. We are hopeful that the IVIG infusion as well as the new lower levels of Prograf will allow his natural immune system to fight this nasty virus.  In the past Urology has not been in favor of any treatment because the risks outweighed the potential of successful treatment.  With the increasing pain and the length of time he has been dealing with this issue they are discussing a course of treatment that will hopefully offer Chase some relief.

We will be decreasing our home nursing hours over the next month.  By the end of March we will be self-sufficient.  I HOPE!  Regardless, by March 27th we are on our own!  ( certainly not on our own...Grandma and PaPa as well as our Houston family are always available to offer assistance)  After the way the last year has gone it is almost mind boggling to think we will be able to do this without any outside assistance.  Not to mention that the wonderful nurses that have come into our “Houston Home” have now become not just friends, they are family.  We will be very sad when our time together is much less frequent but hopefully the hours we are able to spend together will be much more pleasurable for everyone involved.  Lunch, dinner or church services spent together should help with our separation anxiety.  I know the entire McGowen family will miss these very dear ladies.

Tom and Casey continue to visit almost every weekend.  Tara and Garrett have been here as frequently as their schedules will allow.  We welcome visits from the outside world.  As long as there have been no sniffles, sneezes or runny noses please know we would love the distraction.  Chase really does get tired of me.  We were very happy to see Rose, Mark and Tyler on Friday.  We spent a great weekend with Amanda, Casey and Tom then Pam and Brian joined us last night.  Chase was happy to see Brian.  He told me this morning how good it was to have the time to visit with his very oldest and dearest friend.  Visiting with Pam gave me the girl time I have been missing. Thanks to all of you for taking time out of your busy schedules to come see us.  This has been a very long process and our contact with the outside world is extremely limited.  We are looking forward to something that even resembles normal life.   

We are hoping that as the weather begins to improve we can start venturing further than the hospital. Last weekend, Chase was able to make his first outing since June.  Tara and Garrett took him to pick up dinner.  Yesterday was not quite as pretty as we anticipated but we did convince Chase to take a “stroll” through Herman Park.  While it was still a bit overcast the temperature was warm and we all enjoyed the outing.  I am looking forward to the springtime so we can spend many more hours there and hopefully without the wheelchair.  I love the zoo and the Japanese gardens, as you can imagine these are not quite as entertaining for a 19 almost 20 year old male.  Especially not with his mom! 

We can’t thank you enough for the continued prayers of love and support. I see the miracle of GODS blessing every day when I look into my son’s eyes.  There is only one way to explain Chase’s continued healing and recovery, this is simply an amazing show of GOD’S power.

I truly thank GOD that “Thy will” and my will were the same.  We are praying for many MANY more years to shout praises of thanksgiving for this amazing gift.  I pray that Chase continues to live every day to the glory of GOD and that he be an amazing steward to the generous gifts of life he has received.  TWICE!

I ask that you keep the donor’s family in your thoughts and prayers.  This is such a joyful time for us but we can’t forget the loss this family is dealing with.  I continue to think of our first donor’s family.  I did not want to tell them that Chase’s first set of “new” lungs were rejecting.  It broke my heart to think how they might take this news.  Every year on January 5th we celebrate Chase’s new life.  We also pay tribute to the very amazing young woman who was a firm believer in God, who lost her life, but continues to bless us by giving Chase a chance to live.  Now we have another date – December 20th. We are so thankful for every moment we have with Chase.  We will never take these gifts for granted and we will forever be blessed by these acts of kindness!

Carol

There is no way I can ever thank our family for all they do.  From the BBQ delivery service that almost always somehow involves a honey do project - to the constant trips to the store to pick up something I either forgot or simply just did not have time to get - Mom and Dad - you are the very best!  We would never have made it without you.

Our family has not only provided food when we were exhausted and could not think about cooking, entertainment and distractions, computer assistance, carpet removal, cleaning services, moral support and unconditional love though every aspect of this crazy journey.  For this and everything else - WE THANK YOU! We are blessed and honored to be part of this amazing family!

 

Sunday, February 7, 2010  12:08 AM, CST

Chase was discharged Thursday evening. 

It was amazing to see him climb the stairs.  He is still very unsteady but he is making progress.  The transition home is always quite challenging. Thanks to my sister and mother-in-law as well as our home nurses things went smoothly.  We continue to watch him closely and monitor his temperature, oxygen levels, blood pressure and blood sugar levels around the clock.  I am a bit concerned about his oxygen levels and his fluid retention but nothing that warrants calling the doctors over the weekend.  I don’t know what I would do without our amazing home nurses.  I know that they would be the first ones to call the doctors if they felt there were issues that need to be addressed immediately.

We will be back in clinic on Monday morning.  Labs, PFT’s and Physical Therapy will make it a very full day.  Hopefully they will see that Chase is continuing to make progress.

Chase enjoyed seeing Ashley today.  We all realize it is a long drive but your visit was just what he needed.  He spends all of his time with his nurses and family and it does him a world of good to see a new face.  Thanks for spending the day with him.

The weather is beautiful!!  I simply can’t wait for Chase to be able to get outside and enjoy life again.  It is unbelievable to think that he has not been anywhere other than this house and Texas Children’s Hospital since June 8th.  I can’t even joke that “Time flies when you are having fun” – this has been an emotional rollercoaster and we all share his pain.  God has however blessed us by placing so many wonderful new friends in our paths on this journey.  I give thanks every day for our amazing friends, family and loved ones.  Thank you for all the continued prayers of love and support.  I would hate to think where we would be without each of you.  

GOD BLESS

 

Tuesday, February 2, 2010 8:09PM, CST

Good Results.


The bronch went well yesterday.  We got the results of the biopsies this morning.  EVERYTHING is looking wonderful and there are no signs of rejection.  YEA!!!  It feels so good to be able to rejoice over test results!!

Chase is making progress with the Physical Therapists.  Walking continues to be difficult but I see improvements on a daily basis.  We are expecting to have everything ready for discharge on Thursday.  The surgeon will be by sometime tomorrow to remove the chest tube and the pain management team has made changes to his medications that will hopefully provide some additional relief.

For the first time in months we are discussing plans for an outing other than from the Houston house to the hospital.  It is such a blessing to be able to have that discussion.  We are all overjoyed at the prospect.

Thank You for keeping Chase and our friends at TCH in your thoughts and prayers.  I continue to hear what I think is good news regarding Witt’s care plan. Our precious Tommy (Rocky) is still having a tough time but he is as cute as ever.  We even got Chase to walk down the hall to peek in on him this afternoon.  Rocky just smiled and waved.  He is such a sweet baby boy and the only reason Chase walked that far was to check in on his little friend.

Carol

Monday, February 1, 2010 10:47 AM, CST

Waiting...

We are currently waiting for another bronch - we understood that it would be between 7 and 10 this morning.  I guess we should know how things work by now.  Unfortunately, just when his appetite is raging they want him NPO for this procedure.  We pray this goes substantially better than the last Bronch.

The best news in several days actually came from the Renal team this morning.  The Adenovirus is GONE and the BK virus has reduced in quantity. He is still having a great deal of pain but this should decrease as the BK virus goes away. 

Barring any unforeseen complications we are making plans for discharge on Wednesday.  Chase will be required to return to see the Lung Transplant team on Mondays and Thursdays as well as Physical Therapy appointments on Mondays, Tuesdays and Thursdays.

Witt's family has received some hopeful news and they are still in the testing process.  Our sweet little Tommy ( aka - Rocky) has had a rough few days.  Please continue to keep these families in your thoughts and prayers. I think we often take the health of our children for granted.  I know we have always just assumed the girls would continue to be HEALTHY.  Seeing what these families are going through simply breaks my heart.  Please pray for every aspect of their lives.  Everything goes haywire when you have a sick child.  These families have been in the hospital the better part of a year.  Even as much as we have dealt with I am in awe of what these families have on their plates.  May God bless them and keep them!!
 
Always,
Carol McGowen

 

Thursday, January 21, 2010 8:30PM, CST

Chase is still making progress.

The Adeno and BK viruses are still in his urine.  Urine is the only culture that has tested positive.  THANK GOD!  The Rx treatment is the same for both and as of today the expected length of treatment is 12 – 14 days.  They will continue to closely monitor and make adjustments as needed.

The Renal team gave orders to remove the catheter used for dialysis late yesterday.  NO MORE DIALYSIS BEING PLANNED AT THIS POINT.   They even removed the potassium restriction and are allowing Chase more fluids.  This makes it much easier to find foods that he is interested in and allowed to eat. YEA!!!

The surgeon, one of our favorite doctors, switched the chest tube from the large water/suction chamber to a new small bulb device.  This makes the twice daily physical therapy so much easier.

Chase had several bone scans and ultrasounds to rule out any infection or damage to the tailbone.  As of now everything looks normal and this may be a slower healing process due to his diminished medical condition.

From a lung and kidney standpoint Chase is recovering nicely and no mention of concerns from the Liver team. He still has a few issues that need to be addressed including an irregular heartbeat – PVC.  (They are not sure what has caused this new complication and it may have a simple answer – we will have to wait to see).    Currently the main issue of concern is the presence of the two viruses. I pray that the viruses respond quickly to the Rx and that the next culture is negative.

From time to time I have shared information regarding some of our friends here in the hospital.  Often I do not mention names when I ask for specific prayer requests but today is a HUGE exception.  I know that my dear family and friends have some very powerful prayers and that God has certainly listened and answered in a very positive way.  We have two near and dear families that we have become very close to.  They need our prayers more than ever.

Our VERY special little friends - Tommy alias “Baby Rocky” and Witt are struggling.  Their families are faced with some very difficult decisions.  I don’t even know if these two families know each other but I can assure you that their families have touched our hearts.  I cannot imagine being in their situations.  Even when things have been there most uncertain for Chase we were always waiting for Chase’s body to choose the direction and path for future treatment.  Please pray that GOD gives both families a VERY CLEAR PATH TO FOLLOW and that GOD will give them the strength to make the most difficult decision they hopefully will ever make.  Pray that they will know in their heads and their hearts that they are making the right decision.  Pray for their hearts, their marriages, and their entire family as they make these decisions.  I pray these families will have peace as they move forward from this point.

Thank you for your continued prayers, love and support.  May GOD continue to bless  you and your family.

 

Monday, January 18, 2010 11:16PM, CST

Quick update:

Chase “broke” the dialysis machine last night.  Well, he took credit – the machine simply stopped.  They were going to take him off this morning.  It just happened a little earlier than expected.  He slept GREAT without the constant pull on his neck from the catheters.

They placed a new PICC line this morning in order to administer the TPN.  Then he was “homeward bound”  back to PCU room 711.  It also does a parent’s heart good to know that your child is well enough to be moved out of ICU.  MUCH MORE COMFORTABLE FOR US AS WELL – A BED SURE BEATS THE CHAIRS IN ICU.   He is still on reverse isolation to ensure he is not exposed to anything else.

The final results from the recent viral cultures are still not posted.  Today was a Baylor holiday – not a TCH holiday and therefore may have added to the delayed.  I am still very worried about the Adenovirus culture.  I pray it was a false positive and that the Rx being used to treat it does not cause any damage.  I will be able to breathe a sigh of relief when the next cultures come back negative.

From my perspective he is looking great and is making huge progress.   He is still in a bit of pain but that is to be expected.  Physical therapy resumes early tomorrow and I expect he will be back on intermittent dialysis by tomorrow afternoon.  

First and foremost I want to see negative viral cultures.  With gracious uncertainty we wait for the results and we continue to pray that God is not finished with Chase yet!

 

Sunday, January 17, 2010  2:00 PM, CST

I found this very fitting and sometime wonder if they are directing these specifically to the McGowen family

www.purposedriven.com


Gracious Uncertainty
by Jon Walker

Oswald Chambers, in My Utmost for His Highest, writes "The nature of the spiritual life is that we are certain in our uncertainty." He describes this as "gracious uncertainty," where "we are uncertain of the next step, but we are certain of God." I would add we can be certain of God's grace while being graciously uncertain of the future details of our lives.

With gracious uncertainty, we can be confident in our expectations, knowing our hope in the Lord will not disappoint (Romans 5:5). With gracious uncertainty, we can release the things we have no responsibility for, yet worry about anyway.


Sunday

I feel that Chase is steadily improving.  They were able to extubate him yesterday afternoon.   He is now on one liter of oxygen, the NG tube was removed this morning and all of his vitals are stable.  It is our hope that they will be able to change from continual dialysis to intermittent tomorrow.  THEN BACK TO PCU!

I am not exactly sure when they will do another urine culture for the Adenovirus.  I believe the blood culture will be back by Monday.  At this point they will continue to give the Rx and we pray that all of the additional cultures are negative.

Chase asked Garrett and me what had happened.  It was very difficult to find the words to explain to him why he is back in ICU.  We explained the entire crazy ordeal and then he went back to sleep.  Late last night he enjoyed watching a YouTube comedian and listening to music with Casey and Amanda.  He had us all laughing!  Sometimes laughter is the best medicine.

Several of his favorite people from PCU have come down to visit the past couple of days.  It means a lot to us when they come to check on Chase.  We are blessed to have them in our lives and honored to call them friends.  Their love and kindness goes way beyond the call of duty and have helped Chase through this very difficult time.

This has been an extremely long journey.  We knew that there would be bumps and potholes in the road to recovery.   I pray that the path to complete recovery is smooth and uneventful from this point on.  We are most appreciative for all the continued prayers of love and support.  May GOD bless you and your family!

With gracious uncertainty we continue on this journey.  We pray that THY WILL and my will are the same.  Please continue to keep Chase in your thoughts and prayers.

Carol

 

Saturday, January 16, 2010  2:08 AM, CST

Prayers are what we need!!

Chase tested positive for Adenovirus, a very common bug and simply a nuisance to the general population.  For a recent transplant recipient on extensive immunosuppressant medication it is very dangerous and frequently fatal.   The urine culture was the only culture that tested positive at this point.  We can only hope this was a false positive.  Chase is currently on the Rx Cidofovir.  This medication also has a fair amount of risks and is very hard on the kidneys, but considering the options this was the only choice.  We are simply waiting and praying that the RX will kill the virus!!  We will be more cautious than ever regarding visitors to limit any additional exposure.   I do however get a good feeling from the doctors - I think they are truly optimistic.  The dialysis is going well and we are praying for the best.  If his attitude is any indication I think he will be ok.  He is watching TV right now and was enjoying his Ipod and being silly with the girls earlier this evening.  He is not able to talk but he can certainly get his point across.  If he gives me permission later I will post the photos he allowed me to take tonight.  He has been ADAMENT that we not take pictures when he is like this.  He hated his trach and only wanted to get back to “normal”.  He is extremely uncomfortable – the dialysis catheter in his neck is painful and the ventilator may be nothing new but the tube down his throat is the biggest part of the problem.  We are very hopeful they will be able to turn off the vent and pull the tube tomorrow.  There has been no discussion regarding the length of dialysis or a move to PCU.  We will see how the weekend goes and hope that each and EVERY day brings rapid healing and total successful recovery!

He has once again been an amazing example of strength and grace.  Simply accepting that everything did not go as planned.   I am forever hopeful that Chase will be blessed with many MANY years to shout GOD’S praises from the highest rooftops.  He is just one of GOD’s many miracles.

 

Thursday, January 14, 2010 11:32 PM, CST

Busy Evening-

Dialysis catheter placed and dialysis started.  The Renal and Critical Care teams are coordinating the procedure.  As of now we have no idea how long this will be necessary.  Chase was moved to ICU room 17.  The other room simply was not large enough to handle all of the machines he is currently requiring.

The Lung and Surgical teams hope to have his blood pressure stable enough to extubate tomorrow.

There is still no confirmed reason for Chase’s current predicament.   They are rerunning a series of cultures.  One of the urine cultures was positive for a viral infection but there is some thought that it might be a false positive.  We hope to have more information tomorrow.  I am much less stressed than I was 24 hours ago. He has had a much better afternoon and I think we are making progress.

I pray that Chase has a very restful night and that tomorrow brings substantial healing.

Thank you for your prayers!



Thursday, January 14, 2010 11:07 AM, CST

Rough Night in ICU

Chase is still intubated and on the ventilator.  They have done several chest x-rays and there is still fluid in his lungs.  Heavy sedation is necessary to prevent him from fighting the ventilator and the tubes.  From the information we have received at this point it is likely he will need to remain on the ventilator for the next few days.  The air pressed into the lungs will help force the fluid out.  We do not have all of the results from the Doppler ultrasounds of the liver, kidneys and spleen preformed yesterday afternoon prior to the bronchoscope and all were repeated again this morning. It is my understanding that the echocardiogram was normal.  The current plan being discussed is to stop all the sedation in hopes the blood pressure go up; place another central line and possibly a dialysis catheter in the event that dialysis is necessary.  All other decisions will be based on how this step goes. 

The blood cultures showed bacteria in the central lines but not in the blood stream.  THAT WAS GREAT NEWS.  They were able to pull the central line last night.  One of the viral studies for a VERY nasty bug (BK virus) also came back negative- THANK GOD!!!  He has not had any fever since Tuesday morning. These are all steps in the right direction. 

Tom and Amanda arrived last night and Lara is bringing Casey this morning.  Garrett will be in this afternoon.  We had family here last night to offer support and a shoulder to lean/ cry on. It is simply the McGowen way to “circle the wagons” when things are not going well.  It is important for everyone that we are ALL here together.

We realize how lucky we are to have such amazing doctors and nurses taking care of Chase.  The medical care is second to none but the love and support from the entire staff is more than anyone can imagine. Their love for Chase and our family is very obvious.  We count our blessings that we are at TCH! 

Please continue to pray that GOD will heal Chase SOON!!  This “little” boy has been through so much and I have to believe that God has some huge plans in store for him.  AND … I am not finished with him yet!!!

 

Wednesday, January 13, 2010 10:06 PM, CST

HELP!  Chase needs our prayers!

CHASE NEEDS OUR PRAYERS OF STRENGTH AND PROTECTION.

HE CRASHED DURING THE LUNG SCOPE AND HAD TO BE PLACED ON A VENTILATOR AND MOVED TO ICU.

"Lord, we ask for your prayers of strength and protection for Chase McGowen. Touch him and heal him.  Let no harm come to him."  Amen

God Bless You All!

 

Wednesday, January 13, 2010 2:19 PM, CST

Hospital Admission: Tuesday

Several outpatient procedures were being planned for Wednesday and Thursday.  Unfortunately, Chase woke up yesterday morning with a fever and hospitalization was necessary.  He was admitted to the Progressive Care Unit and is once again being followed closely by the Critical Care Team.  Shortly after admission the surgeon that preformed the lung transplant happened to walk by.  He quickly recalled the massive fluid retention Chase had after his first lung transplant.  They will do another bronchoscope this afternoon and the surgeon will be installing drain catheters to help remove the excess fluid around the lungs.  It is my understanding these catheters will remain in place until they are no longer needed to help with the fluid removal.  Chase is once again requiring oxygen 24/7 due to the pressure the fluid is placing on the lungs.

Several of the blood cultures are still pending.  However, two of the three lumen of his central line have tested positive for bacteria.  They are still discussing the plan of treatment. At this point they have not removed the central line.  We pray the bacteria is easily treatable and that the infection is not in his blood stream or in his heart.

The kidneys are showing signs of stress and a specific course of treatment is being discussed.

Chase’s spleen is enlarged and the liver panel is showing reduced liver function and signs of stress as well.

As of now the Critical Care Team is helping coordinate the many plans being made by the Renal, Liver, Surgical and Lung transplant teams.  I am sure they will be calling in the infectious disease doctors and possibly the hematologists due to the infections in the central lines.

We are praying that this is just a minor speed bump in the road to recovery.  I know Chase is in the best care possible but prayers are a necessity. 

 

Monday, January 11, 2010 10:43 PM, CST

The healing process continues…..

 

Chase is making progress but often it is one step forward and several steps back.  He is very unsteady on his feet and unable to walk without support and assistance.  We assume partly because of the fluid retention.  The added fluid increases the weight on his joints and is causing major pain.  He has something causing blood in his urine - not exactly sure what at this point but this too is causing pain.

 

Today was a long day with appointments starting at 8:30am – we did not get home until after 2pm.  Mondays and Thursdays are Chase’s required post transplant lab work, PFT’s (pulmonary function tests), clinic visits and physical therapy appointments.  Today we managed to squeeze in two visits to the lab and a chest x-ray.  Unfortunately, we had to cancel the physical therapy appointment due to the chest x-ray and the additional lab work.  We repeat these appointments again on Thursday.  Needless to say we are exhausted.  Chase is still requiring ambulance transport – he is unable to support his weight enough to walk much less navigate the stairs. From the way it looks we will have several more long hospital days this week.  They are contemplating inserting a drain tube to remove the fluid in and around the lungs/chest cavity, another bronchoscopy and a blood transfusion. 

 

I realize we are closer than ever to home being a reality but... every day is a new challenge and there are times I feel like we will never get past all of this. 

 

We are very thankful to have home nursing care.  We realize how much we depend on them when we are on our own for 36 hours. There is no way to explain how much goes into his daily care.  We would not be able to do all of this without Tara, the home nurses, our family, and Amanda.  Chase goes through so much and I am constantly amazed by his strength and stamina.  Dr. Mallory needed to see his VERY large pressure wound “bed sore” this morning.  I was in tears when Chase had to stand up and show Dr. Mallory his tail bone.  This is a HUGE wound caused by the pressure of laying on his tailbone for 12+ hours.  We have been doctoring this since the transplant and it is healing.  The fact that Dr. Mallory stated how much he is looking forward to the day when Chase can once again regain a level of privacy was not lost on my heart.  Every moment of everyday for the past 11 months Chase has been under a microscope. Nothing is private!  I do not believe anyone can imagine what this feels like.  I at least have the ability to close my door – if I have a nurse to watch Chase. 

 

Early January 2009 we began discussing the potential necessity for second lung transplant.  It was mentioned at that time there are often patients and families that choose not to venture down that path.  The mental, emotional and financial stress is simply more than they are willing or able to go through.  I will be the first person to acknowledge it is more difficult than anyone can imagine.   This is much more difficult on EVERY level than it was the first time.  But, I would change NOTHING we have done the last several months.  I would make the same choices and decisions knowing then what I know now. However, if I had one wish …. Or could change one thing… I would trade places with Chase in a heartbeat.

 

Through all of this our children have become so much closer and more connected than ever.  As Tara finishes her last year in college she dedicates the majority of her time here to assist us in Houston.  I cannot imagine many children putting everything on the back burner to help in this type of situation.  She is totally aware that her wedding plans have to take a backseat to the medical/financial obligations we are dealing with.  I know for a fact this is breaking my heart but does not faze Tara and Garrett.  Sometimes we have to sacrifice our dreams for our children.  We were all grateful that Casey was able to be here for the transplant and the two weeks following.  We relied on her and she was able to step in and provide some much needed assistance so Tara could spend some time with Garrett's family for the holidays.  Unfortunately, there were numerous complaints from some of her teammates regarding the fact that she was not at the required swim team practices through the holiday season.  I know how dedicated she is to the team but I appreciate her ability to realize that nothing is more important than family.  This quality I fear may be lacking in many young people these days.  When we are at our lowest we are most dependent and most thankful for the family and friends that have helped us through everything.  The continued love and prayers provide us with the strength we need to face another day. 

 

May God continue to bless you and your family!

Saturday, January 2, 2010 5:55 PM, CST

Due to my computer catastrophe I have been a little slow posting this.  I hate that I do not know how to correct problems that I create.  I will forever be indebted to Mike and Wade for all of their computer assistance.

Chase was discharged on Tuesday the 29th.  The plan had been to release him on Wednesday but I pushed just a bit and they granted my request to discharge him a day early.  Other than the stairs at the house, the transition went very smoothly.  It took Casey, Kim, Warren and I to help him master this feat.  Needless to say Chase was exhausted.   He has spent the last couple of days resting and recuperating.  His body is very bruised and his chest is extremely sore.  If the incision and his O2 levels are accurate indicators, I believe he is healing nicely.  Chase is still extremely weak and I expect his body will will take several  months to completely heal.

Chase was able to visit with several friends.  The doctors gave their blessing as long as visitors were masked and avoided close contact.  We are still being extremely cautious and our home nurses are screening everyone to assure that Chase is not exposed to anything that could possibly complicate his very fragile condition. 
We will always air on the side of caution.   

Our first outing post transplant was a return to Texas Children’s Hospital on New Year’s Day.  Chase handled the stairs much better but it was still extremely difficult.   We will be returning to the hospital several days each week and will rely on Allyn Ambulance to assist in transporting him.  At this point it is simply too difficult for his nurse and I to handle on our own.  I hope with physical therapy Chase will make steady progress and we can once again be able to handle the multiple weekly visits to the hospital on our own.   Monday we will begin the normal post transplant labs, doctor visits, pulmonary function tests and physical therapy.  Tuesday will be the first bronchoscope.  We pray the doctors will tell us that everything is PERFECT and healing nicely!!!  

There are no words to describe how wonderful it was to be “home” celebrating the NEW YEAR with our family.  It is nothing short of a miracle to have Chase here with us, breathing without assistance, laughing, talking and making plans for 2010.  God has blessed our family once again!
I pray that Chase continues to heal with no complications and that 2010 is our best year ever.

We appreciate all the continued prayers and support.  Chase has a very long road to recovery but I believe the best is yet to come.  I can’t wait to see what God has planned next. 

Saturday, December 26, 2009 12:25 PM, CST

Merry Christmas and a VERY BLESSED NEW YEAR!
There is no possible way anyone can deny this amazing MIRACLE!   Chase is doing extremely well.  My computer is on the blink (my fault) so I have not been able to post his progress until today. PROGRESS IS AN UNDERSTATEMENT! He was able to eat two meals yesterday and they stopped the continuous dialysis yesterday afternoon.  We moved from ICU to PCU at 6:00 last night.  OH it was so good to be back!  What a joyous reception we all received.  All of these doctors, PAs, nurses, PCAs and even the housekeeping staff were instrumental in helping Chase get to where he is today.  Tears of joy and thanksgiving were certainly present.  Again, what a VERY MERRY CHRISTMAS THIS WAS FOR THE McGOWEN FAMILY! 

Today: The lung transplant doctors are very pleased with Chase's progress.  From their position he could be discharged today!  Wow, less than six days post transplant.  The renal team will check his levels again tomorrow but they did not see the need to place him on the dialysis machine today.  They will reevaluate after the labs tomorrow morning.  From what I see at this point the only thing that may hold up his discharge next week may be getting the TPN and insulin dosages regulated. This is simply a process and a balancing act. 

I had plenty of hours while sitting in Chase's ICU room to read all of the updates I have posted since this whole ordeal began in June.  It is almost like reading a story of someone else's life.  I realize I wrote every journal entry, Chase has the scars and Tom and I have the wrinkles and gray hairs to prove it.  Somehow the word surreal simply fits!  If anyone ever questions weather GOD still performs miracles all they need to do is take a good long look at this amazing young man.  He is NOT A SAINT and by no means perfect but he is the strongest person I have ever met.  It is obvious to me that GOD has something very important planned for Chase and that GOD is simply not finished with him. FOR THAT I GIVE THANKS... I was not finished with Chase yet either.  Prior to transplant it was becoming increasingly obvious the extent of the physical and mental deterioration.  We were both in tears often and he was almost at the end of his rope.  To look at him now a mere 6 days after he received his new set of lungs, this is nothing short of miraculous.  GOD IS GOOD!!

In the immediate future: Physical therapy and good nutrition are both intricate parts of this recovery process.  I pray that his appetite will increase with time.  He will be seeing Katie or one of the physical therapists twice daily while he is in the hospital.  Once Chase is discharged we will return to see Katie at least three times a week for physical therapy.  The Lung transplant doctors will be doing a bronchoscopy two weeks post transplant to evaluate the healing process and to ensure that there is no  sign of rejection.  I hope that the all the updates I post from here on will continue to be filled with nothing but good news.   I can not begin to thank everyone enough for the continued prayers, love and support.  It is through the SHEER GRACE OF GOD that we are where we are today.  He certainly listened to all of our prayers.

Many people have asked about visiting Chase.  After speaking with the critical care doctors the following guidelines are in place.  They have suggested that visitors wait a minimum of seven days after flying to insure they are symptom free before seeing Chase.  We are as concerned as ever about germs and illnesses getting transmitted while he is healing.  Currently they are limiting guests to immediate family as a precaution.  He will be allowed visitors in the very near future BUT please be aware of any cold or flu symptoms you might have, including coughing, sneezing or fever.  If you have been around anyone suffering from these symptoms we request that you wait five days before visiting to insure you are not contagious.  As always err on the side of caution.   We are so thankful for all of the sweet cards and letters.  Chase has returned to his old room, 712!  His direct line is (832) 826-0712.  He finally has his cell phone back but since reception is limited you can keep in touch with him via facebook and email.

All I have wanted the last several months was to have my children and family HEALTHY and HAPPY under one roof.  Celebrating the birth of Jesus and Chase's new gift of life at Texas's Children's Hospital with my husband and all three of my children was the most wonderful gift I could have ever hoped for.  I pray that 2010 will be our most blessed year yet!
 
 Sending you and your family our love and best wishes for a Happy New Year.  Please continue to keep the donor's family in your thoughts and prayers.  This has to be a very difficult time for them.  We can not ever forget where this blessing came from.  I know that our prayers are powerful.

Wednesday, December 23, 2009 7:40 PM, CST

Wow… what an amazing day.  It comes as no surprise to me that Chase is tired.   The doctors are very pleased with his progress.  The Renal team is AMAZED. For some reason his kidneys started to function quite well once the dialysis began.  If things continue on this path the doctors will be able to decrease and possibly stop the dialysis in the next day or so.  Next stop… PCU!

Dr. Morales, the surgeon, was impressed and was able to pull two of the four chest tubes.  He hopes to be able to remove the remaining two tomorrow.  Chase told him “if I ever am in need of a chest tube again I hope you are the one that installs it as well as pulls it” – “that did not hurt at all”.  Considering the 18+ chest tubes Chase has had in his body this is a HUGE compliment.   Now I pray that the removal of the last two will be pain free as well.

Katie the physical therapist came by this morning.  Chase was able to sit on the side of the bed.  The dialysis machine prohibits him from moving any further.  This afternoon Robin was able to get him to sit in the middle of his bed and cough numerous times.  This is much more difficult than it sounds.  Once the dialysis is stopped he will begin a more traditional form of physical therapy twice daily.  I know we are all looking forward to him regaining his strength.

Chase was able to eat his first meal.  The food was delicious and we are all happy Tara shares my joy of cooking.  It is a challenge to prepare food for someone on a sodium, potassium, fluid restricted diet.  Thank goodness he is not on a low carbohydrate diet and we are able to simply give insulin to cover the carb count.  Food intake was the only point of concern mentioned today.  Proper nutrition is an intricate part of the healing process.  Now we have to get really creative with our meal planning. It is not easy preparing food for him. However,  it is something we are more than happy to do.  No prepared restaurant food fits into his dietary restrictions.  Once the kidneys are out of danger he can begin a more normal diet.  I expect these restrictions will be required for several weeks but this is tolerable.  Heck, FOOD has been the four letter F word in our house for several months.  I just hope this is about to change as well.

We pray that Chase continues to make this type of amazing progress.  I truly expected to be ringing in the New Year with all of our hospital friends… It would be wonderful if we could just invite them to the house for a midnight toast.  Who knows stranger things have happened.

God has truly blessed Chase indeed and I pray that a speedy, complete recovery are in his immediate future!

 

Wednesday, December 23, 2009 12:53 AM, CST


Another busy day!  The Renal team discussed dialysis with Chase this morning.  After explaining their thought and listing all options Chase simply decided it was not worth waiting to see “IF” the kidneys would “wake up” on their own.  He just thought if it would help expedite the healing process why not start now.  We were all in complete agreement!  They had to take him into surgery to place the catheters in his neck for the dialysis.  The procedure and general anesthesia did not have any negative effects.  The dialysis machine was already in the room when he returned and they began the treatment within the hour.  He is handling everything at the moment better than I could have ever believed possible.  There is something very calming in seeing him sleeping comfortably without the trach and vent.  He was placed back on oxygen for the surgery but it will be discontinued before the morning.  He is not currently in pain but I expect there will be more discomfort tomorrow.  It was necessary to remove the epidural prior to the procedure.

Currently, but as with anything dealing with Chase, this is just a tentative plan; continuous dialysis for three days then they will reevaluate the situation and make plans to switch to intermediate dialysis.  Once this is done we can move back to the Progressive Care Unit.  No idea how long it will take from that point.

Physical therapy begins tomorrow.  I have no idea what that will entail, the machine he is hooked to requires him to be still.  I am sure Katie will come up with something.

We will be waiting to have “Christmas” in the PCU.  It was funny when someone told me how sorry they were we were going to have to spend Christmas in the hospital.  They obviously don’t know the McGowen family very well.  I just laughed… and said  “considering EVERYTHING that has gone on in our lives THIS IS THE ONLY PLACE WE WANT TO BE RIGHT NOW.  WE COULD NOT BE HAPPIER AND THIS IS THE BEST CHRISTMAS EVER”

We still have to pray that the lungs stay healthy and that this is the only road bump in Chase’s recovery process.  He still has a long way to go but RIGHT NOW ... I am very pleased with what I see.

We wish you and yours a VERY SAFE BLESSED CHRISTMAS!

Please continue to keep the donor’s family in your thoughts and prayers.  This will be a very difficult time for them and we simply cannot forget!!!

 

Monday, December 21, 2009 4:43 PM, CST

Last night: 

Considering everything, Chase had a good night.  His temperature had been a little elevated from time to time and his blood pressure was a bit of a problem.

 

Today:

He is now extubated and breathing on his own. Finally - NO VENTILATOR / NO TRACH and only a nasal cannula supplying 2% oxygen -  O2 level is 97  WOW!  First time since March!  He is THIRSTY and now enjoying a few ice chips – wanting more but we need to keep the new lungs a bit on the dry side.  Blood pressure is a little better - still a bit concerned about the kidney function.  The Renal team is closely monitoring the situation and will make adjustments as needed.  We hope that they will not find it necessary to place him on dialysis, but that is a possibility that has been discussed. 

 

GOD IS GOOD!!!!  This is a true testament to HIS ability to heal!!!  What a Christmas Miracle!!

 

Please continue to pray for a very VERY speedy recovery!!!

 

Sunday, December 20, 2009 5:00 PM, CST

                         Moved to ICU!!!
Chase is out of surgery and is now in the ICU.  We have not seen him but we have been told by his Heena that he is doing wonderfully.  The surgeon let us know that the transplant went great – Chase’s new lungs, as well as his heart and kidneys, are functioning to the surgeon’s satisfaction.  We are waiting to be allowed to see him but we expect Chase will be very out of it this evening.  We thank you for your continued prayers of love and support.  I ask that you PLEASE keep the donor’s family in your thoughts and prayers.  We are so thankful for this amazing gift but it is imperative that we remember from where this blessing came.  Pray Pray Pray that GOD will keep all of us in His loving embrace through this holiday season. 

 

Sunday, December 20, 2009 1:00 PM, CST

CHRISTMAS CAME EARLY FOR THE McGOWEN FAMILY!!

We received the call last night that it was time.  The pager did not actually go off… but thank GOD for cell phones!  They started the transplant around 4:00 a.m.   All of the updates we are receiving continue to be very positive.  He is stable and everything is progressing smoothly and much more quickly than anyone anticipated.  It was wonderful to check into Texas Children’s Hospital and be directed straight to the 7th floor.  It was like going home.  Having his favorite night nurses to help prep him for the transplant was simply awesome! 

Tom was already here with us for the weekend.  All of the family was here to give Chase hugs, kisses and even a little back scratching before he was taken back. Our home care night nurse was able to be here to help with the admission process- Chase loves her dearly and having her here eased his nerves. Chase’s spirits were great while anxiously waiting. He was steadily maintaining his sense of humor with all of us and the nursing staff as well. I know Chase will be happy to be recovering in ICU with some of his favorite doctors, nurses and PAs. I believe the reason we are here for this transplant today is a direct result of the amazing care Chase received in ICU and PCU.  These people are second to none and we can never express our sincere appreciation for all their care and assistance. 

 I was in the middle of preparing Christmas cards to send out Monday.  I have only gotten a few addressed and I can promise if it has not been addressed yet it won’t be.  Below is the 2009 update to the McGowen Saga! 

I have put it off long enough…with Christmas Day drawing near it was time I stop procrastinating and write the 2009 chapter in the McGowen saga.

 

2009 McGowen Family Update

Tara and Garrett are now engaged and we are happy to welcome Garrett into our family.  This young man is exactly what every mother dreams about for her daughter.   He has unfortunately learned very quickly the McGowen topsy-turvy life.  Tara graduates in May with her degree in Psychology.  She and Garrett will be married shortly thereafter.  As most kids her age were playing and enjoying their last summer as college students, Tara spent her time helping provide care and assistance as well as emotional support for Chase and I in Houston.  We would not have survived without her.

The past 12 months have been very hard for Chase.  October, November, December 2008 he spent battling major liver complications.  His liver does not like Doxycycline!  January 2009 he was on the road to recovery – so we thought.  By February it became apparent that the liver complications put a huge strain on his lungs.  In March we spent several weeks in Houston consulting with the transplant doctors.  By April, Chase and I moved back to Houston.   In June he turned 19 while admitted to Texas Children’s Hospital. This was neither his nor anyone’s idea of a birthday celebration.  His only wish was that he would live to see 20.   It was tough on all of us.  I was getting the handicapped parking permit the day he turned 19 and making arrangements for a wheelchair to be delivered.  Things simply got worse and included several weeks in ICU followed by months in the Progressive Care Unit.  From May 2009 through the end of September 2009 Chase spent over 120 days admitted to Texas Children’s Hospital.  The day of discharged was bittersweet.  We were very apprehensive regarding our ability to care for Chase. He is on 24 hour ventilator and oxygen support, continual IV and more medications than anyone can imagine.  We have amazing home care nurses to assist in providing the care he requires. It was touch and go for a very long time but, he is finally, once again on the Lung Transplant List.  As much as we learned about transplants the first time around… nothing prepared us for this.

 Casey is 16 and now a junior.  She continues to swim for her high school team as well as in the community summer league.  Along with swimming she is enjoying her Partner’s in P.E. and ASL III classes.  I hope she will choose to continue her studies in ASL at the college level and be able to somehow incorporate this into her degree plan.  She is an amazing kid and we are so proud of her.  She has proven herself time and time again and we can’t thank her enough for being exactly who she is.  God obviously knew our hands would be full with medical issues so he gave us daughters that would not add any additional stress.

Tom is doing everything he can to keep things going in Austin.  He makes the trip to Houston almost every weekend.  I think he has missed only one weekend and that due to weather!  As exhausted as I am I can’t imagine making that drive over and over week after week. He currently has a few houses under construction but this is certainly not the best time to be a custom home builder working for yourself, especially with the craziness going on in our lives. Tom is somehow managing to multi task but this is not an ideal situation and we pray that God will provide some much needed answers to our financial dilemma. 

This entire year has been a rollercoaster.  Emotionally, physically, mentally, financially and spiritually – every aspect has been challenging.  I remain steadfast in my belief that surely God has not brought us this far without something wonderful planned for our future.  Most of all we pray that Chase will have a very successful transplant and a speedy recovery, Tara and Garrett will be blessed with many years of wedded bliss and that Casey continues to enjoy school as she prepares for college. 

 

This year has brought some very amazing people into our lives.  We have been blessed by the addition of new friends as well as some people that we will forever consider family.  I believe this is God’s way of placing the platinum not just silver lining in our darkest greyest cloud.  I truly thank Him.  Our new friends as well as our long time friends and family have helped us in more ways than we could ever believe possible.  The prayers, phone calls, text messages, emails, dog sitting and visits provide us with the ability to continue this path to transplant.  Please know how much we appreciate everything!

 

The McGowen Family

Tom and Carol

Tara, Chase and Casey


2009 Updates

Chase is an amazing 19 year old teenager who was born with Cystic Fibrosis. CF affects several organs, including the lungs and liver. This makes it very difficult for the body to fight off common infections such as colds or flu.  Chase spent a large part of his life in the hospital.  Between 2002 and 2003 his lungs collapsed 14 times in 12 months. Through it all Chase and his family have remained positive. However, in 2003 Chase and his parents received the difficult news that the disease had taken it's toll on Chase's body, and he would require a lung and liver transplant in order for him to survive.

On January 5, 2004, at the age of 13, Chase underwent a double lung and liver transplant. The surgery was a huge success and they were blessed with several years of amazing health and normal life. In 2007 Chase was diagnosed with stage II acute lung rejection. This did not slow him down and he continued to thrive. Shortly after Chase graduated in May 2008 he had an allergic reaction to an antibiotic. This had a negative effect on his liver. After several hospital visits it became apparent that the liver would eventually heal. Unfortunately this did not hold true for Chase's lungs. In early 2009, Chase's lungs began to fail. The decline was much more rapid than anyone could have expected. Chase spent this past summer at Texas Children's Hospital for 111 days but whose counting? Chase is currently on the lung transplant list anxiously awaiting another miracle-his second lung transplant.

 

Thursday March 9, 2006
Chase is doing amazingly well. We are still dealing with Stage II acute lung rejection but... he looks great and is continuing to grow taller and gain weight.
The speech he presented at the REMAX Texas State convention in early February was awesome. The way he tells his story gives me goose bumps and always brings tears to my eyes. Honestly mine were not the only eyes tearing up. Let us hope and pray that when we are in Florida and D.C. he is able to do an instant replay. The Children's Miracle Network function is coming up. We are looking forward to the trip. Packing for 90 degrees in Florida and then 40 degrees in D.C. might be a bit tricky but we will manage! The event should air on local channels sometime in April I think. I will share photos when we get back! Chase is now driving. Driving Permit that is. Big, BIG change from not even being able to get in and out of the car by himself a little over two years ago. WOW!! We are so amazingly blessed. There is not a day that goes by that I don't thank God! EVEN WHEN HE IS DRIVING ME CRAZY. I have joked that for 14 years I prayed for normal ... I now have it or a pretty decent facsimile thereof and I don't know how to handle it. He is from everything I know a VERY TYPICAL 15 YEAR OLD BOY. Therefore I am the TYPICAL CRAZY MOM!!

On another extremely positive note... Tara McGowen was nominated for and has received one of the "5 KIDS WHO CARE" awards from KVUE. This is a tremendous honor. She will go for her photo shoot tomorrow and the awards banquet is mid April. There will be a program airing shortly after showing each of the five recipients and sharing their story and the lives they have touched. She is such an amazing child and a wonderful example to the children she mentors to. We are so proud of her.
Casey is doing awesome. No photos of her... she did not like them since she refused to smile due to her braces. They will hopefully be off finally tomorrow. Just in time for her to be an official TEENAGER! YIKES! Let's hope she does not act like a typical teenager! She is enjoying school and making great grades. Casey is such a summer girl. She is ready to start swimming again. I guess with Basketball and Volleyball over she is missing the workouts. I need to try to find somewhere for her to swim year round if she still intends to make the high school team in the future. The competition is tough but we know she can do about anything she puts her mind to.

Saturday, January 14 , 2006
Email from Shelby and Kim Zimmermann
Good Morning to All! I write to you to let you know what Shelby is going to be doing in less than 24 hours. She will be running the HOUSTON 1/2 Marathon! She decided back in October that she wanted to attempt this 13.1 mile adventure. I did NOT suggest this. She began to put in her miles and get serious about her goal. In November, we attended an assembly to honor Chase as the Texas Spokesperson for The Children's Miracle Network (see Carol's story below, and the pictures). Governor Rick Perry was the speaker who described what a hero Chase has been. We got to talking about running with the Governor, and realized he would be in Houston with his friend, the Governor of Arkansas for the 1/2 Marathon. Well, as if to stand in honor of Chase and solidify our support of him, Governor Perry asked Shelby to start the Half Marathon with him. At noon yesterday, the secret service agents called to confirm our plans to run! : )
SO, at 7am Sunday, January 15th, we will run! Run because we can! Run to honor Chase. Run to show our support for the daily battle he still fights! If you would like to join us in support, Shelby is asking for:
- Prayers for her Cousin Chase
- Prayers for her 8 year old body to feel GREAT tomorrow.
- Donations for Chase's Medical assistance fund -- just $1 / mile would be a donation of $13.10. Please consider this.
- Send this email onto others you know that may offer their support.
Last week, her 3rd grade class began a research project about an "Important Person." Shelby has selected Chase. He truly is important! Please take a look at his web site and see what all he has conquered. www.helpingchase.com
To stat this new year, Chase got test results indicating a LEVEL II Rejection of his lungs. They are aggressively treating this. We are prying for our God to continue to work miracles in Chase's body. And we are in AWE at the courage and strength that Chase takes on yet another battle. I thank you for your time to read this letter. I appreciate all the prayers and support through the years. I ask for your prayer support tomorrow. Blessings to you and your family, Shelby and Kim Zimmermann

Wednesday, November 23 , 2005
Chase As many of you know either first hand or through the grapevine, Chase had a HUGE surprise yesterday. The Children’s Miracle Network and Texas Children’s Hospital of Houston coordinated with McNeil High School and Texas Governor Rick Perry’s office to honor Chase with a pep-rally to celebrate the fact that he was chosen to represent the state of Texas in D.C. and Disney World in the Champions Across America fundraising and awareness campaign in March 2006. This will include the national television production of the Children’s Miracle Network Celebration at Walt Disney World and locally, he will participate in numerous events with Children’s Miracle Network sponsors which will include sharing his amazing story.
I found out about this SURPRISE less than 24 hours prior to the big event. Honestly, I was terrified how Chase was going to react. This is a 15 year old kid who has no problem telling his story in front of the news camera crews, high level business executives and even sports superstars but… considering that all he has ever wanted was to be normal… a surprise of this magnitude with PAUL CHASE MCGOWEN being the CENTER of attention at SCHOOL is more that I thought he could handle. OH WELL, THEY DID NOT INCLUDE ME ON THE PLANNING COMMITTEE. To make a long story short, the child surprised us once again. I truly believe, we could never have made it through this event without your love and prayers!!! We were so honored that Randy, the youth minister from church was able to be there for Chase. I contribute a lot of Chase’s success in this matter to Randy’s presence. The event included, the band, cheerleaders, the student body and even the Governor was there to present him with this amazing honor. Chase handled the situation with grace. He did not talk much ... heck if it had been me I would have thrown up and pee-peed in my pants. He however did neither. For a while I was very concerned that he blamed me for the whole shebang. When he realized that Governor Perry was there I was quickly off the hook. I can do a lot of things but… I do not have the ability to produce the Governor of Texas.
THANK YOU FOR CONTINUING TO KEEP US IN YOUR THOUGHTS AND PRAYERS. CHASE IS ALMOST 2 YEARS POST TRANSPLANT AND DOING AWESOME!!!
We are truly honored that Chase has been chosen as the “Texas Ambassador”. This event is very near and dear to our hearts. I have stated on numerous occasions there is no way we can ever repay the amazing gifts our lives have been blessed with. From the friends, families and even strangers who prayed and prayed for our entire family, from the countless hours spent organizing the Chase McGowen Golf Tournament and the Race for Chase and most of all to the family that through their personal loss saved my son’s life. We can never REPAY all that has been given or done for us, but we can certainly make an effort to honor each of you with our ability to help others in need.
Please know that we wish you a very HAPPY THANKSGIVING and we are blessed that God has put each of you in our lives. Without you we would not be where we are today! All My Love and Best Wishes, Carol McGowen

Tuesday, May 10, 2005
Chase presented a speech (see below)at the Children's Miracle Network golf tournament at Gleanloch Farms Golf Course in Houston on Monday April 25th. It was an amazing event and the proceeds went to the Texas Children's Hospital branch of Children's Miracle Network. After his speech there was not a dry eye in the house. I was very proud of him.

All is ok in our world. We are excited that school is almost over. Tara is studying around the clock for AP and SAT tests. Chase is doing great medically. He is making wonderful progress with his weight and he is physically feeling awesome. He is actively involved in church and truly looks forward to the activities the youth group is involved in. He is anxiously awaiting the end of the school year so that he can have more time with his buddies in the neighborhood. This has been a tough year but all in all we are please with his progress. Casey is finally feeling better after her sinus surgery this past February. She recently returned to the swim team and is playing on a select basketball team from Town and Country.
- Carol

Children's Miracle Network Fundraiser
Gleannloch Farms Houston, Texas April 25, 2005

Hi, my name is Chase McGowen. I am 14 years old and I have Cystic Fibrosis. I received a double lung and liver transplant at Texas Children's Hospital on January 5th, 2004.
I was always a sick child with frequent hospital stays that sometimes lasted for 8 weeks at a time. My life began to really fall apart in May of 2003. In 12 months my lungs collapsed 14 times. I spent more time in the hospital than at home in that year. It was so scary to be playing X-box with my friends one minute and then suddenly not being able to take a breath the next. Most times once I got to the emergency room there was simply not enough time to put me to sleep in order to insert the chest tube. This got to be a normal part of my life. I spent many days in ICU each time this happened. Once the anesthesiologist hugged my mom and told her he had never been so scared … they had lost me on the table.
My mom and I moved to Houston in May 2003 to be close to Texas Children's Hospital while we waited for my transplant. I was on constant oxygen and had little energy to even walk from the car to the house. I only had 12-15% total lung capacity. I knew I needed a lung transplant to survive but… we were all so scared when they said I had to have a liver transplant too. There were only 5 pediatric patients world wide and only 17 total in medical history to ever have this done. After receiving special permission from Texas Children's Hospital Administrative Board I was accepted and placed on both of the transplant lists.
In the 8 months we waited for the pager to go off my mom took care of the constant IV meds needed for me to stay healthy enough to receive the transplants. My Dad would bring my sisters from Austin to visit as much as possible. This was a very hard time for my entire family. I missed my Dad and sisters; I missed my house and my friends… I was scared I was not going to live.
Life is never going to be "normal" for my family. We will always have to worry about rejection, medical costs and issues that most normal families don't ever have to think about. But… this is the first time since the middle of my 5th grade year that I have been able to attend normal classes on the school campus. I am now a freshman and looking forward to my sophomore year. I have no idea what God has in store for me or what my future may hold but I know for a fact that I have survived by the constant love and support from my family, the commitment of Texas Children's Hospital, the generosity of the donor's family, and by the SHEER GRACE OF GOD.
Thank you from all of the children whose lives you have touched over the years. Your continued support of Children's Miracle Network means more to us than you can ever imagine. Take it from someone who has spent a huge part of his life constantly in and out of the hospitals.
- Chase

Tuesday, January 4, 2005
HAPPY NEW YEAR! It is hard to believe that 2004 has come to an end.

Tara coached Casey's Volleyball team. The team took second place in the final tournament. I think Tara enjoyed it as much as the girls. Casey will be unable to play next fall if she makes the school team, so Tara has received special permission to coach again in this league next year. Tara is a junior this year and is busy studying as well as trying to decide where she wants to attend college. Her AP classes don't allow much time for a social life. We however, are enjoying the time with her. I think it is going to be difficult on all of us when she graduates and leaves for college. I have lost so much time with the girls in the past several years that I simply want to turn back the clock and recapture those precious moments.

Chase is doing remarkably well. It is amazing to realize that it has been one year since he received his double lung and liver transplant at Texas Children's Hospital. No sign of rejection as of yet. For a child that never attended middle school, high school was an adjustment. It was simply tough on all of us, but we survived! Unfortunately, with the unexpected surgery and complications in late September, he had to remain in the homebound program through the remainder of the semester. We are all looking forward to his return to school in the next few days. He is currently serving on the Children's Advisory Committee at Texas Children's Hospital and is enjoying the chance to make a difference.

Casey is swimming during the school year with Lone Star Aquatics and is determined to make the high school swim team. She continues to play volleyball, basketball and swims with the Forest North Stingrays in the summer. Middle school has truly been a welcome change. She thoroughly enjoys her choir class and is looking forward to joining the sign language club. It is difficult to grasp that she is turning in to an amazing young lady before my eyes.

We invite you to join us in celebrating one year of new life for Chase on Saturday, January 8, 2005 at the Williamson County Regional Park at 9:00 a.m.
Additional information regarding the walk and celebration are available on Chase's website www.helpingchase.com and at www.signmeupsports.com.

The fundraising events for Chase continue… Many thanks to The Forest North Stingrays and the Balconies Sharks swim teams, Newmark Home Corporation, Texas Capital Area Builders Association, Shannon Briggs with Mary Kay for the "Lipstick For Life" campaign, and the event coordinators and participants of both the golf tournament and the walk/celebration. Without the continued prayers and the generous support, we surely would not have survived this most financially devastating situation.

Recently, I began to compose a letter to the donor's family that gave so unselfishly the gift of life to Chase. There are simply no words to express our gratitude. It is surreal to think that through the midst of the loss of their child they were able to give Chase life. God continues to bless us and I want to take this time to thank him. We would not have made it through these years of trials and tribulations without his divine love and guidance. Please know that you are one of those blessings and we thank God that he placed you in our lives. There are many times we all get caught up in the here and now and simply lose sight of the most important things in this busy world. Our wish for you in 2005 is simple… MAY GOD BLESS YOU AND YOURS THIS YEAR. MAY YOU ALWAYS REMEMBER TO LOOK AT THE LTTTLE THINGS IN YOUR LIFE AND GIVE HIM THANKS. ‾The McGowen Family‾

Monday, October 18, 2004
Wow… after almost three weeks we have the boy back in Austin. He is doing amazingly well. The tremendous swelling is almost gone. The bruising however will take a bit more time to subside. One of our favorite doctors stated "we should know that anything that is normal and routine simply will not be that way with Chase". We have joked with him in the past about his "stump the doctor game". Believe me he has given a great number of the world's best a few jolts. I will be keeping him on his homebound school schedule for the next several weeks. I think his body needs this time to simply rest and recuperate. His wonderful homebound RRISD teacher will simply come to the house and teach him here. This is not what Chase wants but I feel under the circumstances this is the best path.
The girls are happy we are home. I sometimes think it is harder on them for us to be gone than it is for Chase and me. Tara took her PSAT on Saturday. We are anxious to get her score back. Casey is enjoying volleyball even though Coach Tara had to miss the game this past Saturday. Coach Tom (Coach Dad to Casey) stepped in and the girls were once again victorious. Casey also missed a lot of swimming in the past few weeks while we were gone due to a major sinus infection and ear problems. Certainly par for the course… let me be away and both the girls get sick. They are back to normal, enjoying school and happy to have us home.
I can not begin to thank you for the tremendous prayers. I honestly contribute Chase's continued health and wellbeing directly to the love and support we have received over the past several years from our friends, family, loved ones and strangers alike. The fact that I have not lost all sanity is another amazing testament to the power of prayer. THANK YOU, THANK YOU, THANK YOU!!! Carol

Tuesday, October 5, 2004
Thanks so much for the amazing prayers!
The 9 month post transplant evaluation went amazingly well. NO SIGN OF
REJECTION!!! The surgery to close the hole where the G-tube was took place Thursday 9/30 ... 30 minutes prior we received the test results of the GI probe that showed a major reflux problem. They decided to correct this at the same time. New studies have found that a major reason for lung rejection is the acid reflux allows gastric juices to enter into the new lungs doing unbelievable damage. Chase's acid level was astronomical. Thank God it was caught this early. The double procedure was supposed to take about 2 hours...considering Chase was the patient... it was no surprise when it took almost 5. The procedures went very smoothly but... of course there were complications.
WOW... It has been crazy but... considering the HIGH fever (which is a common sign of major infection... ) the blood culture came back mid day yesterday and it was NEGATIVE!!! The internal bleeding has stopped! He is extremely swollen and very VERY uncomfortable and is turning black and blue. They decided late yesterday that considering the results of the blood culture, there was no need to continue the IV antibiotics and the fact that the bleeding had stopped that the best place for Chase is at home in the Houston house. We have to remain here for at least 7 days with out patient appointments to continue monitoring his progress. There are too many sick people admitted in the hospital so that is not where he needs to be plus... I am more than willing to take care of him here. Once again I am truly in awe of the power of prayer. Honestly there are no words to express the true concern that at least 7 of the big doctors were faced with in dealing with Chase. I can once again proclaim that the only reason we are where we are today is due to the sheer grace of God. Thanks so much for the amazing prayers...we would not have made it without them and each of you!
Carol McGowen

Thursday, September 23, 2004
It is simply way past time that I get everyone up to speed on how things have been progressing.
Life as we know it is good. God has surly blessed us in more ways than I could have ever hoped.
We had a wonderful summer. Chase's 6 month post-transplant evaluations were awesome. No sign of any rejection! From what I understand, the majority of lung transplant recipients show some sign of rejection at this point. We have had a few wake-up calls reminding us no matter how "normal" things may seem…, we are not a normal family and Chase will always have to live by a special set of rules. We all tend to quickly forget how close we came to losing him. Weight has been a major issue. I think partially because he simply doesn't want to slow down long enough to take time to eat, as well as the fact that the hole where the G-button was removed is still leaking. This has become a Major Nuisance. No one wants to eat or drink and then have to clean up the drippy miss off their tummy. Obviously, this is vicious cycle and one that desperately needs to be dealt with. There was the problem with the Pulmonary Function results. The numbers that were being reported showed a potentially BIG problem, possibly even rejection. Upon a very close evaluation of the PFT computer, chest x-rays, blood work, and physical examination of Chase they came to the conclusion that the problem was the way he placed his hands on the cylinder to do the test. Next, there was the major stomach bug that added to the eating a problem. Again, this was simply a snap back to the true reality of our life.
Chase and I took an awesome class this summer presented by Transplant Speakers International. What an amazing group. We are looking forward to spending more time and energy in the future promoting organ donor awareness. I could tell by Chase's response at the meeting and on the way home that this is still a bit too new for him. I think we were both in the same boat. We both simply wanted to find our place in the life we left behind and figure out where we fit. My life in Houston was much more focused on the major issues at hand. We concentrated all of our efforts and energy into keeping Chase alive, striving to grab every ounce of life that God blessed us with. Our life in Austin, well…things tend to get fuzzy and the truly important issues get mixed up in the not so important day to day issues. I am still trying to figure out where I fit in but…most important… Chase is now back where he belongs!
WOW… Chase in high school. This is an adjustment. He has not attended school in a classroom setting in 3 ス years. He is taking a full load…8 classes. English and Math are taught here at the house by his Homebound Teacher. (We are doing this in order to keep the homebound status so he has the flexibility when we are in Houston for our long appointments or if there are major health concerns during the cold and flu season.) I can honestly say that there is not one person that walks into that school that has more desire to be there than Chase. I will never lose sight of the fact that I prayed continually to be able to give Chase a "normal" life. The fact that he is able to go to school like all the other kids is simply more amazing than any of you can ever imagine. It honestly has been the little things that have meant the most to me in our post-transplant life. Seeing this child sleep…"truly sleep" and physically rest, to hear him laugh, see him run, and the fact that he can now go and do things with his friends. He will never be a football player or swimmer like most of his dear friends, but the fact that he can get on his bike and ride to Joe's house is a better gift/accomplishment than the Hiesman Trophy.
The girls are doing awesome. I can not express how truly happy I am to have all three of my children under one roof. Tara is enjoying her junior year at McNeil. She is truly awesome. She has opted not to play volley ball this year… we were somewhat sad regarding her choice but… this is her life and she has chosen to focus more on her academics this year and to begin taking hours at Austin Community Collage next semester. I know I am extremely proud that she is already receiving collage letters the first few weeks of her junior year. Casey is now in middle school. This is quite a change from when I left for Houston before her 4th grade year was over. She is so grown up. She is swimming year-round with the Lone Star Aquatics program in addition to playing on the Town and Country Volleyball League. Tara is coaching this team and doing a remarkable job. It makes my heart so happy that she was extremely excited about the prospect of coaching Casey's team. Chase has even attended the practices in order to serve as ball boy to help retrieve the balls & acquire his community service hours for school. I am so blessed to have such great kids. Do not be fooled. They are also driving me crazy. THIS IS THE NORMAL THAT I HAVE BEEN PRAYING FOR! THIS IS THE SAME MESS, ARGUMENTS, LAZINESS AND PROCRASTINATION THAT EVERY FAMILY HAS TO DEAL WITH. I NEVER PRAYED FOR PERFECT. That is simply not a reality.
Next week, we have the 9 month post transplant evaluation. I am anxious to know how he looks from a clinical standpoint. I am expecting it to go smoothly.
We are very excited about the celebration being planned for January. Some very dear friends, Kristal and Lisa are planning a 1 year party to celebrate Chase's new life. The event will be a 5K run scheduled on January 8th. Please check out the website for all the details.
I have been in contact with several other families across the country who are facing battles very similar to what our family has faced. They have come to me asking for guidance on fundraising, to ask questions regarding some of the paths and decisions we were forced to make and simply to have someone who can share their pain. Please know that I understand there is never going to be a way to repay each and every person who was so instrumental in getting us to the point we are at today. I will simply continue to offer my help and heart to those people who God brings into my life. Your amazing gifts of love, pray and support have not stopped with the McGowen family. I am sending them on!
Please continue to keep us in your thoughts and prayers. We hopefully have a VERY long road ahead. As of now the bumps have been few and far between and I know beyond a doubt that your prayers have helped smooth out the rough spots.
May God Bless You and Yours! Carol

Saturday, June 12, 2004
Chase is now 14 years old. The welcome home / Happy Birthday party that the Krusee family and friends gave Chase was truly amazing. It made my heart so happy to see Chase surrounded by the kids he has grown up with. We are all truly blessed to have such wonderful children. I never take for granted this family community we live in. I don't know any other neighborhood that could ever compare.
Chase is doing great and is teaching me how to parent the normal teenage boy child. His 6 month post transplant evaluation is scheduled for the middle of July. This will be several days of testing that will include blood work, bronchoscope, and physical tests. I am anxious to know how the Doctors think he is doing.
The girls are enjoying their summer. Tara is in Mexico. She is spending the next several weeks with her Godparents and their family in San Miguel. This is a trip of a lifetime. We have talked to her several times and all is well. She said that the views are beyond belief. They are attending school in the mornings. This also includes "field trips" to many of the historical sites around town. This is truly the way to get submersed in the Mexican culture. Casey is puny at this time and had to miss the last swim meet. I am hoping that this mess will clear up soon. Between the ear infection and the upper chest congestion she is not quite up to par. I am hoping that she will be able to swim this Saturday. This is certainly not the time for the child to get sick but…. We all know we have little or no control over that.
I wish each of you a restful relaxing summer break. School will start before we know it. OH my am I not looking forward to the next step on our road to normal. Chase starting high school. In theory it sounds great. I just pray that this is a smooth transition. God Bless! Carol

Saturday, June 12, 2004
I am so sorry it has taken so long to share this good news. We no longer have a computer in the Houston house so I must wait until we return to Austin in order to update the website.
Chase is doing great! There did seem to be a problem with the small airways but... the major problem was not even with the machine but with the operator. That would be Chase... not his lungs but the position of his little finger on the mouth piece. We are all fully aware that transplant recipients have setbacks. We are so blessed that this was not one of Chase's. I know that this was another eye opener to keep us in check with reality. Prior to this he has truly felt and acted like a normal boy. He honestly needs to remember that he is normal but his body isn't.
We must send our thanks to where it is due... God truly answered some amazing prayers. Thanks to each and everyone who prayed for Chase's health condition and our sanity. We are extremely blessed to have you on our team.
Chase is now anxiously awaiting the party that the Krusee family has planned for him tomorrow. This is to celebrate his return to Austin and his almost 6 months of new life. Not bad for a kid that is about to turn 14. His little body has been through so much. It is hard for me to mentally comprehend all that has transpired in the last 5 years much less think about what this child has endured.
We are still completely unaware of what the future may hold but...I can tell you that the view looks great from here. God bless you and yours, Carol McGowen

Monday, June 7, 2004
I will send an update as soon as we know what the doctors think after our appointments in the next couple of days....Tara decided to travel to Houston with us. I think this has helped Chase and Me considerably. Chase still does not feel physically bad... let's hope and pray that there is simply a problem with his PFT machine or something minor that can easily be taken care of. I know beyond a doubt that God listens to our many prayers. We have been so blessed to have such amazing prayer warriors in our corner through out this entire ordeal. When I sit back and think of where all of our lives have been in the past 3 years it is truly a miracle that Chase has made it this far. I thank each of you for keeping us in your thoughts and prayers. Without you we never would have made it!

Friday, June 4, 2004
Please keep Chase in your prayers...his PFTs (pulmonary function tests) are showing a problem in the small airways. We will be heading to Houston on Sunday and have an appointment with Dr. Mallory as well as more extensive tests and chest x-rays with the expectation of performing biopsies on Tuesday. It is difficult to believe that this typical, stinky, almost 14 year old boy could be getting sick once again, but... We will hopefully have some idea of what is going on by Tuesday next week. Tara's 16th birthday is Monday. Funny... the only thing she wanted for her birthday was to be at home with her mom. (OK her friend Tess and Thai food were also mentioned but regardless... this will make three years in a row that I have been unable to be here for her!)

Friday, May 14, 2004
Please know that this is one of the most joyous as well as one of the most difficult updates I have attempted to compose.

Chase is doing better than we could ever imagine.
March: We spent an amazing spring break on Lake Travis with family and friends. The trip made us all realize how truly "normal" Chase has become. To watch him play and simply enjoy being a 13 year old boy is more than I ever dreamed possible. There is nothing better than to watch him play basketball, TOUCH football, roast marshmallows over an open fire, horse around and drive his sisters crazy. The experience was simply another miracle.
April: We attended the Houston Rocket's game against the Kings the first Sunday in April. The game was amazing but… in the end the Rockets did not walk away victorious. Chase however did! He was able to meet several of the players…. Check out the amazing photos. I can't begin to thank our dear friend Burke as well as Troy Greer from The Women's Hospital of Texas for making this possible. This was a once in a life time experience. The fact that the Rockets players took the time to meet with not only Chase, but with several amazing young people is something to truly be admired. Their commitment to both the children as well as the community is quite astounding.
Chase's 3 month post transplant evaluation was an answer to all of our prayers. He continues to amaze us all. He has asked us on many occasions if he can water ski this summer. My response to almost everything at this point concerning things I am not quite ready to consider is "that is not a parenting decision I feel comfortable making at this point… you need to ask the Doctors". Well… much to my dismay… they almost unanimously agreed that it is perfectly fine for him to water ski this summer. Providing he take the normal precautions and not push the envelope so to speak… this should not be a problem. Oh well … so much for me thinking they would say NO WAY. My most recent question is "well… if we are trying to encourage him to be as "Normal" as possible… when can he start mowing the grass". Guess what… the answer to that question was… "YES". Now I just need to get a lawn mower that works. I can tell you I am currently on the lookout for a new parenting manual as well… they forgot to give me one when they gave me a NORMAL child. I now know what a Normal 13 year old boy looks like, acts like and SMELLS like.
We are currently able to spend a bit more time in the Austin area. What a joy to be back in MY house with all three kids under one roof. I have to admit… I am having some Downtown Houston withdrawals. I so miss the amazing "family" we created in our little "utopia" there. I look forward to the time we are able to spend in Houston.
Please continue to keep our entire family in your thoughts and prayers. There are a tremendous amount of other personal issues going on at this time and we need the power of your prayers to get us through this emotionally trying situation. Tom and I are filing for divorce. To some this may not come as a surprise. Please know this is not easy for either us or the children. We have been through a lot over the past several years, emotionally we are both exhausted. I have to continue to remind myself that compared to where I have been in the past… watching my mother lose her long battle with cancer, watching Chase deteriorate in front of my eyes, and being separated from my girls… this may be difficult but I know we will make it through this set of trials and tribulations as well. I guess that means I have to get a job… UGH!!! Keep Praying….
.

Friday, March 5, 2004
Chase is doing GREAT! The doctors have given their approval to visit Austin but we still must continue to reside in the Houston area until early June. It is amazing to see Chase ride his bike, take a walk around the corner to a friends house and to simply sleep and breath like a normal kid. He is eating me out of house and home. The Doctors are once again blown away at his progress. They removed the picline this morning. NOW HE CAN HAVE A NORMAL SHOWER! If anyone questions if miracles still happen... give them Chase's website. We are here by the sheer grace of God. God Bless!

Sunday, February 22, 2004
C
arol McGowen Speaks at the Cystic Fibrosis Annual Meeting
"This is the speech that I gave 2/18 at the Cystic Fibrosis Annual Meeting in Houston, Texas... I wish I had been able to follow it but... I was a blubbering idiot 1/2 the time. It is easy to talk about causes that are less personal and that you have not personally lived through. This however is MY SON and MY LIFE and it HURTS to relive even this tiny aspect, of what we actually went through."

Hi, I am Carol McGowen, Chase's Mom. I want to thank each of you for coming tonight and allowing me to share my son's story with you. Tom and I have three children… Tara- will be 16 in June, Chase- will be 14 in June and Casey will be 11 next month. Tara and Casey are as healthy as they come… Chase however was born with Cystic Fibrosis.

We knew he was different from the moment I gave birth to him… his APGAR scores were extremely low and he was about as yellow as they come. I truly believe, if I had delivered him anywhere other than the birthing suites at Brackenridge Hospital, they would not have allowed us to take him home. The home photo light therapy was sheer torture for everyone involved. I simply wanted to hold him. … I will never forget thinking… surly God would not let him die in my arms…

We fought for 2 ス years to figure out what was wrong with our precious son. The fact that I was pregnant with our third child when we finally got the diagnosis simply added to the extremely difficult situation. We have dealt with numerous pediatric doctors in Austin, Galveston and Temple over the past 13 years. Chase was, what I considered, a pretty typical CF patient… with the addition of some liver problems that seemed, at the time, to be managed with medication.

When he was in the middle of his 5th grade school year, I began to get worried. He was getting sick more easily, was very tired, and was producing a tremendous amount of mucous. I believe this was the beginning of his downward spiral. I removed him from the public school setting and placed him in the Round Rock Homebound Program. This came with a tremendous amount of negative feedback from friends, family and loved ones. It was tough, but I had to stand my ground. Dr. Copenhaver however supported my decision. With his unexpected departure from the Scott and White facility in early May 2002, we were forced once again to look for care for our son.

That left us grasping at straws when Chase's lungs began to collapse in the end of May 2002. We returned to Brackenridge Children's Hospital for help… Chase spent more time in patient from May 2002 to May 2003. His lungs collapsed at least 12 times. He remembers 13 -14 times. BUT WHO IS COUNTING? Honestly…. Every time we were released from the hospital…we were home several days, maybe a week and the lungs would collapse again. To make things more difficult on all of us this was usually when my husband was out of town on business. It got to be such a routine happening that I would simply call the surgeons on their pagers, they would call the emergency room and give the necessary orders, there would be someone waiting with a wheel chair to wheel him in when I drove up and everyone knew what happened next. It is sad to say that after several times, this became old hat. No more tears, just numbness. That is, until the anesthesiologist wraps me in his arms on the way to the Chase's P I C U room. With tears in his eyes, he tells me he had never been so scared in his entire life… they had lost Chase on the table … "thank God I was able to bring him back to you" he said. This had become the "McGowen Normal."

In February 2003, the lung transplant subject was brought to our attention. The way this was introduced to me is another story all together. Thank goodness for the amazing team of pediatric surgeons we were dealing with. Thanks to their kindness, help, and professional opinions I realized there was no other choice. We shared all the information with Chase and left the decision to be made by a 12 year old boy. This may seem tough to most of you but… I can help him do anything and I can provide the medicine, doctors, love and support… but I can not do it for him. Again, this was a major issue and I think many people thought I was wrong to let him make the ultimate decision. But, this was his life. As much as I love him, he had to be 100% willing and ready to fight to live. He had to choose.

The insurance company informed us that Los Angeles and St. Louis were our only options… we had learned early February of the new program at Texas Children's … they would not agree to cover it in network. Going out of network was simply not a choice we could afford to make. With less than a week before we were scheduled to leave for St. Louis, I had a long conversation with their lung transplant coordinator. She was able to give me several web sites to look at that included United Network for Organ Sharing, and The Organ Procurement and Transplantation Network. What I found rocked my world… there were over 40+ pediatric patients waiting for lung transplants with his blood type in St. Louis and in excess of 25 in Los Angeles. When I shared this information with our Austin Doctors, they were amazed and totally unaware. He simply did not have that much time to wait. Chase would die on the list. With my many pages of internet printouts, the call was placed to my husband's insurance company… again, God does answer prayers… Houston was approved and in network.
This is where it came in handy that Newmark Home Corporation is owned by a company that is self insured. They make the rules and they can change them.

We left straight from Chase's hospital room at Brackenridge on May 13, 2003 and checked in with the Lung Transplant Team at Texas Children's hospital on the 14th… this began our Houston Adventure. I was in awe to learn that my sister Kim and her husband had agreed that it was best that she come with Chase and I to Houston. She came to offer her love and moral support, as well as helping me care for Chase. Her kids would simply be enrolled in the Houston School district in August. Kim and I had worked together for many months before as caregivers for our mother as she lost her long battle with Non-Hodgkin's Lymphoma in April 2001. I thought that was tough… it did not prepare me for this. The move was difficult on all of us. No one came out of it untouched. Chase was most concerned that they would not accept him into the program. The extensive evaluation process had him worried! His lungs had been adhered twice to his chest wall in order to keep them from collapsing again. This too complicated his case. We all apparently passed the mental, physical and emotional evaluation… the night before we got the good news that they accepted him into the program, I went into his Houston bedroom… he was quite upset and had tears in his eyes… I asked if he hurt or what was wrong… he said he was simply afraid that for some reason or another they would not think he was a good candidate for transplantation. This is A LOT for a child struggling to breathe. It was a lot for a mommy.

Life continued to be crazy for the 8 plus months we waited. Nothing however was crazier that when we learned that Chase not only needed new lungs but a new liver also. We all felt that we had been run over by a train. Knowing this amazing Doctor the way I do now, I can tell you this was very difficult conversation for him as well. We count our lucky stars that Kim and I were able to administer the many IV antibiotics that were required, work out at the church gym in order to provide Chase's physical therapy, and simply to grab the life that was in front of us. Our Houston Adventure has certainly been entertaining and extremely exhausting at times. Living a stones throw from Mecom fountain, between Main and Montrose with my sister and three children has been quite unusual. Many people have questioned whether we are truly sisters… our family dynamics have been transformed… We have had to learn how to live with two chiefs in one house…Tom and the girls have had to figure out how to manage for themselves…My brother in law has had to learn how to spend his weeks alone in a large, quiet house. Chase was able to return home in late October for a visit and to attend the First Annual Chase McGowen Charity Golf Tournament. Several of our friends were kind enough to organize this event in order to help us fund this VERY expensive endeavor. An added benefit for Chase was seeing his house, his friends and sleeping in his bed… this was a first since early April 2003.

Chase had his double lung and liver transplant on January 5th, 2004. This 12 + hour surgery went amazingly well. The Doctors were extremely pleased with his speedy release from the Hospital… 15 days! With the transplants a mere six weeks behind us, we are truly in awe of his progress. Life is precious and I am so thankful that God provided people like Dr. Mallory and Pegg Dobemeier to care for my son. Chase still has a long road ahead… sometimes I feel that we exchanged one set of problems for another… we are hopeful that this set is one that he can live with. The key word is LIVE. We are holding up the very best we can. I would be lying if I told you that there were no pity parties, no tears, no falling apart at the seams… all this happened and more. Family ties have been stretched, twisted, pulled, knotted and untied. Sometimes a good glass of wine and a few tears help to get me back in focus. I miss my family and friends; I miss my house, most of all I want all three of my children under one roof so that I can kiss them ALL goodnight. I think we all get too busy in our "Normal" everyday lives and begin to take things for granted. Life is hard. But oh is it precious, and wonderful. As I look at Chase, breathing without an oxygen tube in his nose, watch him dance, laugh, sing and play with his cousins, sisters, and friends, I truly sit back and thank God for our many blessings! I will forever be in debt to the amazing family of the donor that so generously gave my son the gift of life. What a totally unselfish thing to do. They have no connection to Chase or our family. They lost their own precious child and chose to give unknown people a chance to live. With this in mind, I want to urge each of you to make known to your family and love ones your desire and feelings regarding organ donation. It is ultimately the family that decides, not the card you sign.

While other kids were busy playing outside, Chase has spent the last several years watching the Travel and History channels. This was his way of seeing the world, instead of participating in it. Chase has always had to sit on the side lines and watch. These shows gave Chase the idea for our next adventure, hopefully on a cruise ship in our post-transplant "Normal life." He has always desired to see the Egyptian Pyramids, but the closest I can hope to give him will be the Mayan ruins. Now is HIS chance. We just need to figure out how to pay for this one.


Friday, February 13
Chase's procedure went well today. We are home (Houston Home) staying warm and dry. We hope to hear something tomorrow regarding the biopsies but expect nothing but the best! Dr. Mallory said that everything looked BEAUTIFUL! THANK GOD!!

I want to thank the amazing residents of Katy, Texas for their continual love, support and prayers. It is unbelievable the goodwill that this city has sent our direction. The Katy Tigers were the high school state football Champions 2003-2004 school year! They were so kind to bring a plethora of goodies to Chase. I can honestly say these boys are an example what we want all of our boys to grow up to be... and what we want our daughters to date. Their amazing Christian attitude is 100% genuine and we are blessed that God has brought them into our lives! THANK YOU ONE AND ALL AND MAY GOD BLESS AND KEEP YOU!

Wednesday, February 11: Valentines Day Message

Hey Guys.... I want to wish each of you a Happy Valentines Day! Chase and I were so looking forward to spending this coming weekend in Austin. Oh well... it teaches us to try to plan anything. As of yesterday we were told that Chase has a bronchoscope scheduled for Friday at 8:30. (this is normal post-transplant procedure) They will drain his chest dry on Thursday at our regular visit, (we have been draining him twice a week... taking anywhere from 2 - 2 1/2 liters each time. There is over 6 lbs. of fluid in 2 liters.) Then drain again on Friday. They will put him off to sleep then insert another tube into his left side to try to drain off any fluid that has collected there. The bronchoscope will then be done and they will take 5-7 little nips... from the lungs to biopsy. While they have him under they are also going to remove the G-button (the hole where we drip feed him at night) in order to look at the stomach lining and tissue surrounding the G-button area. They are looking for signs of infection and any sign of rejection. We should have the results on Saturday the 14th. This Saturday is also our 17th wedding anniversary. I know this shouldn't matter but... for Tom to take the initiative to make reservations at not one but two of my favorite Austin restaurants ... I am sad for a selfish reason too. We have not been able to make plans for the last few years due to circumstances beyond our control. Tom and the girls have changed their plans and are now intending to come to Houston on Saturday. We will see how things stand and maybe figure out something to do here in the big city. I wish each of you a better, easier, happier Valentines Day! Always, Carol

Friday January 30: Post Transplant, Visit from the Houston Astro's Jeff Kent
Photos

Things have been quite busy since the last update. I was sent back to Austin due to the horrible cold I had, but… not before we got a special visit from Jeff Kent and numerous others from the Houston Astros. What a surprise! I can't thank them enough for their love, care and attention to Chase. Jeff and Chase talked and talked about everything from baseball, Lake Travis, swimming and Schlitterbahn. This man is truly awesome. Not to mention that the Astros Chaplin also shared a prayer with us before they left. This is a true testament to the entire Astros team, management and philosophy. THANK YOU!!

Due to my unexpected visit to Austin, Tom and Chase got to spend many quality days together… and Tom got to learn all about the new medications to be sent home with Chase. It was nice to spend the week in Austin with the girls. However, not being with Chase at this critical medical juncture was a bit unsettling. I know quite a bit about cancer medication and way too much about medication for Cystic Fibrosis. I honestly knew nothing about anti-rejection medication. Tom deserves a medal! Not only did he do an awesome job entertaining Chase, but the doctors commented on more than one occasion, on what a great job he did with the medical issues. I can honestly say how scared I was to release the reins to anyone…but, he did it!!! Chase was released from the hospital just 15 days post transplant! Tom and Chase got to figure out together what life outside the hospital is like with new lungs and liver.

The new schedule is quite busy! We have scheduled doctor visits 3 times a week with blood draws on Monday and Thursday, as well as periodic unscheduled blood draws to check the anti-rejection drug levels to make sure that they are at a therapeutic rate. He is taking at least 18 medications each day… that totals over 78+ pills per day. He and his cousin Michael are thinking that Chase can get into the Guinness book of world records. Yesterday was the second weekly visit with Dr. Mallory. They drained over 2200 cc. (that is over 2+liters) out of Chase's chest catheter. OH MY… there is no explaining the major relief on his face once this fluid was removed. He explained the feeling as a major dose of morphine. Pulmonary functions were on the right path. We received a new machine that Chase will use for PFT's, (pulmonary function tests), here at the house. The liver team is very impressed with the liver numbers that they continue to monitor closely. The problems we are dealing with at this point should improve with nutrition and time. The fluid in the lung cavity is a result of low blood protein levels. Again, nutrition, nutrition, nutrition! Dr. Mallory prescribed: Filet Mignon (if that is not spelled right blame Chase‾ I can't spell). Unfortunately, Chase does not like steak. Oh well, chicken, fish and cheese are on the menu for the Super Bowl party in this house.

I can say that we do not intend to venture out much this weekend. The traffic and congestion in the 5 mile radius from our Houston house will be unbelievable. We will resume Chase's workouts at the gym next week and look forward to the return of his teacher Mr. Zimmermann. Ok… Chase may not look forward to the work but… he does look forward to seeing Mr. Zimmermann. Please continue to keep Chase in your prayers and please remember the donor's family. Their amazing gift has provided Chase with a chance at LIFE. There are no words that could ever express our sincere feelings that we send their direction. May God bless each and everyone! Carol and the Entire Chase McGowen Family

Sunday January 11: Update from Chase's Mom Carol
Photos

I have a simple request…please keep the donor's family in your thoughts and prayers. They so unselfishly gave my son the most precious gift I can ever imagine. The gift of life! I promise you we will take care of this most amazing blessing and we will never forget their generosity. We are forever indebted to them for giving our son not a second chance, but a CHANCE. This family will always be in our hearts, thoughts and prayers. MAY GOD BLESS YOU AND KEEP YOU IN HIS LOVING ARMS!

It is totally amazing to think that it has been less than a week since Chase received his transplants. This child is a true miracle. It rocks my world to think that God trusted and believed in us enough to bless our lives with Chase. There are a lot of times that I doubted his wisdom in this choice but… "THY WILL BE DONE…" Two of the four chest tubes have been removed and we are hoping that maybe early next week that the other two can also be removed. Chase is still retaining a large amount of fluid. (He weights almost 10 lbs. more than pre-transplant weight. I think the majority of this is fluid retention and should dissipate with the medication that is now being given.) His lower abdomen/hip area is extremely bruised but this does not surprise the Doctors. The oxygen level has remained between 92 and 100. It has been tough to convince him that he does not need to be hooked up to oxygen anymore. Considering that he has had an oxygen tube in his nose for over 20 months… it must be scary to take it off for fear of not being able to breath. He took a walk to the end of the hall and back today. BY HIS CHOICE! The constant IV pain medicine was stopped yesterday. Chase still has control of the "pain button" that can administer a dose if he needs it. He simply doesn't seem to need it.

He asked yesterday…"… was this considered MAJOR surgery?….." He was joking of course, but that is the way he tends to look at things! If Chase continues to progress at this rate, we will be home (Houston Home) sometime next week. It simply blows my mind to see how Chase has handled this situation and how this amazing team of doctors have worked together to take care of him. They are truly the best of the best and we owe them so very much! I can honestly tell you that without the constant love, support, and prayers we would never have made it to this point. I have copied all the emails that have been sent and taken them to share with Chase. He has so enjoyed hearing from each of you. We still have a tremendously long road ahead but… the view looks great from here. Please continue to keep us in your thoughts and prayers. Please take a moment to check out all the photos… Hillary Duff, the star of Disney's Lizzy Maguire Show, came in to visit with Chase on Friday. Stay tuned for further updates.


Thursday January 8: Chase's Story in the Austin-American Statesman

The Austin American-Statesman's headline article in the Metro & State section: "A prayer answered: Teen gets new lungs, liver". The story by May Ann Roser describes the drama and explains the medical and technical milestones accomplished with Chase's surgery. We are hoping the Statesman will allow us to feature the article on the web site.

Wednesday January 7: Chase's Story in the Houston Chronicle

The Houston Chronicle's Jeannie Kever tells the emotional path leading to Chase's successful double transplant. Chase is the first in the state to receive a double lung-liver transplant. Kever's article "13-year old first in state to receive double lung-liver transplant", tells the behind the scenes story leading up to the historic surgery. Dr. George Mallory, Dr. Dean McKenzie, Dr. John Goss, nurse coordinator Pegg Dobmeier and others including an amazing team of nurses and support staff are to be commended for the wonderful work they have done.

With the help of journalist Jeannie Kever and Houston Chronicle Librarian Sherry Adams we are able to link to the articles about Chase.

- Teen doing well after lung and liver transplant

- 13-year old first in state to receive double lung-liver transplant

Chase Gets Transplants!

Wednesday January 7: Chase Update

The bronchoscope went well yesterday afternoon and all breathing tubes were removed. As soon as the tube in Chase's mouth was removed, he exclaimed, "I HAVE NEW LUNGS!" and then cried. Emotions were high in the room between Chase, Pegg the transplant coordinator, and Dr. Mallory the lung transplant specialist doctor. Chase continues to amaze everyone with his quick recovery. Now that the breathing tube is out of his mouth obstructing his speech, Chase is much happier. Tuesday evening he asked his dad if they brought the laptop computer so he could play some games! Today, Chase is breathing without oxygen! His O2 levels are between 95 and 100%! He is stable and has not lost his sense of humor. As of 3:30pm, Chase was moved out of ICU and is now into the progressive care unit.

Tuesday January 6: Chase Update

Chase is doing better than expected. Both the lung and liver transplants went well. He has come to this morning and is doing fine other than frustrated with all the tubes and a bit itchy. The doctors will perform a bronchoscope this afternoon to check out his new lungs. If all goes well, the breathing tube will be removed.

Monday January 5! Chase Gets Transplants!

Chase had his transplant today. All went better than expected!!! The lungs were started at 9 am this morning and lungs were finished around 1:30 and functioning great. The liver was started at about 2 and just finished at 5pm. The doctors were able to complete this surgery without any type of blood transfusions.


Monday December 29, 2003

We hope everyone had a Merry Christmas. Ours was quite busy but… I can never express how wonderful it was to spend time with my family, all together, under one roof. We enjoyed a beautiful candle light Christmas Eve service at First Presbyterian Church. Next… off to Pearland to gather with Tom's parents and his Dad's side of the family for Christmas Eve Dinner. Christmas morning Tom and the Girls ventured to Tom's sisters house for a Christmas morning breakfast gathering. Chase and I opted out…Neither of us are morning people but it is simply too tough for Chase get all of his breathing and therapy in to clear his lungs in order to be anywhere by 8. Chase and I waited for them to return and enjoyed a quiet Christmas morning watching the parade on TV. The five of us were able to share Christmas afternoon and simply be together and watch movies and just hang out for several hours. Next… we returned to Tom's parents' house for Christmas Dinner. It has been many years since we have participated in the Christmas time festivities with the Houston side of the family. Honestly, between our lives revolving around the hospital for too many years to count, either for myself, my mother or Chase, we have chosen to enjoy the quiet holiday season in Austin. It was wonderful to be with the entire McGowen / Anthony clan. I truly think the kids need to see, feel, and participate in the large family gatherings, Tom's side of the family can provide for them. Chase's Dr. appointment was not too good this morning. His pulmonary function test was down considerably… This does not surprise me due to the way he sounds at this point. It has been almost a month since his last round of IV antibiotics. THIS IS AMAZING! We are going to monitor him to see if it is time to start them again. We have an appointment with the liver Dr. on Wednesday. This is simply routine. Several weeks ago, the pager went off (or should I say cell phone went off due to the fact that the pager took a plunge in the toilet the night before). Once again… there was no transplant… Thank goodness that the Gilberts' were here to help defuse the let down. We know in our hearts that God's timing is perfect and we will not question. WE HOPE AND PRAY THE EACH OF YOU HAVE A SAFE AND VERY BLESSED 2004. MAY GOD BLESS YOU AND KEEP YOU ALWAYS, CAROL

Friday December 5, 2003 - Merry Christmas!

We Want To Wish Each of You A Very MERRY CHRISTMAS and a BLESSED NEW YEAR! GOD BLESS YOU AND YOURS, THE McGOWEN FAMILY

Friday, November 21, 2003 - We have been hanging in there... Chase is back on IV antibiotics. We have had a bit of trouble with an allergic reaction to the Vancomycin. I think we have that taken care of at this point. The focus now is to get the meds to run in at the proper rate... between one med taking 5 1/2 hours and the other taking 1 1/2 hours X three times a day ( doses every 8 hours - 6:00 am / 2:00 pm / 10:00 pm ) you can only imagine the frustration and exhaustion. This is keeping us quite busy. School for all three of the kids is going great. Chase greatly enjoys his teacher, Mr. Zimmermann. Kim's kids, Shelby and Michael, are convinced that they want to finish elementary school in downtown Houston! Speaking of Kim... I have to brag about my sister. While we were in Austin for our last visit, Kim was running the San Antonio Marathon. I am so proud of her. She had her best ever marathon time...and was in the $$. Kim placed 5th woman overall. I can assure you it was not enough for lungs and liver but... I have told her she needs to pursue other races in the area to continue to fund our Houston Adventure. Heck... someone has to make some money! The plans at this point are that Chase and I will be returning to the Austin area for the Thanksgiving holiday. The transplant Dr. will be leaving the Houston area so there is no way the pager can go off. Tara, Chase and Casey all requested that we have a quiet family meal. I can't begin to tell you how very much that was music to my ears. I get to cook in MY kitchen, with my awesome pots and pans for MY family. It is the simple, little things that truly make me happy at this point. As good as all this sounds, I would be most happy eating cold pizza in the hospital POST-TRANSPLANT! On a silly note: WE FINALLY MET THE FLAMINGO MAN! We emailed him the night of the most recent Houston flood because we saw that he was busy working late. I let him know we had a t-shirt for him from Chase's Golf Tournament and requested that he stop by to retrieve his "party favor". What an awesome man. Chase was able to chat with him for a moment and truly enjoyed meeting the man that we have been "entertained " since early June. I am happy that he has a great sense of humor! We want to wish each of you a very Happy Thanksgiving. PLEASE BE SAFE! GOD BLESS! Carol McGowen

Friday, November 7, 2003 (Photos) - There are so many wonderful things to share that I don't know where to begin. The Chase McGowen Charity Golf Tournament held at Teravista Country Club on October 24th was a huge success. This special event was coordinated by the most amazing friends and loved ones that anyone could ever hope to have. Chase had wanted to attend the tournament but I simply did not think it was in his best interest health wise to attempt to make the trip. Dr. Mallory informed us that he would be leaving Houston that weekend and Chase could go with his blessing. (Dr. Mallory must be in Houston in order for the transplants to happen- no Dr. Mallory…no chance for the pager to go off) I on the other hand was having a problem being on the receiving end of this fundraising event. BUT… it is not about me. Chase wanted to go, so the entire McGowen family was in attendance. Tara even chose to miss her volleyball game and homecoming game. I was very touched that a 15 year old would be so unselfish to give up these things for her brother. (I honestly think she did it as much for my heart and soul as for Chase) The turnout was totally amazing! To see the generosity of friends, family, love ones as well as strangers is truly humbling. Chase had a wonderful time and truly enjoyed his 5 day trip to Austin.

I am including a copy of a letter that I sent to the Austin radio station Mix 94.7 hoping that they would read it on the air. I have no way of knowing if this happened but, I so wanted to share it with everyone. "I am sending this to you for several reasons.... the first being that I was such an emotional mess at the golf tournament this past Friday that there was no way I could get up and thank everyone for their amazing love and support. I would much rather be on the planning committee for such an event than to be on the receiving end. Believe me when I say that the view is much different... extremely humbling! I need desperately to thank the amazing people who attended as well as thank the many volunteers who gave so much to help our family. The struggle continues to be extremely challenging. Mentally, physically and emotionally we are about at wits end! The success of the golf tournament has eased some of the financial burdens for the time being. You don't get to the point where you need a double lung and liver transplant, for a 13 year old boy, without spending a ton of money on the way. The fundraising efforts are still in full swing because the end of the insurance money is fast approaching. The Golf Tournament was a first class event. I am so sorry that ya'll were not able to attend. If you can find time in your schedule...please send my personal thanks to everyone involved with making this event a success. This is want I wanted to say at the tournament but could not find my voice...."

"We want to take this time to thank each of you for attending this event. There is no way we could make it thru the daily trials and tribulations without the love, support and prayers from all of you. We would like to give an extra special thanks to the amazing people who served on the committee. They have been true gifts from GOD! Their commitment to our family is most humbling. Please know that from the bottom of our hearts we thank you!" Chase was able to attend the event and was truly the belle of the ball. I on the other hand tried to be a wall flower and hide as much as possible and still keep my eye on Chase. I was able to spend a much needed week in Austin at MY house and with my girls. I never thought that I would be in a position that I would rather be home than on any beach in the world. I can honestly say that our "Houston Adventure" has put things in a totally different perspective for me. We will never be the same! On behalf of Chase and the entire McGowen family.... We thank You!" Carol McGowen www.helpingchase.com

Chase and I are hoping to be able to make another trip to Austin in the near future. I know beyond a shadow of a doubt that keeping his head and heart in the right place is essential to his recovery post transplant. We had a wonderful Halloween weekend with the Long family. I can't thank them enough for entertaining us this past weekend. The weather was beautiful and we kinda made Chase get up and moving. On Saturday we took a trip to Galveston and made a brief stop at Moody Gardens and then went out for a wonderful seafood dinner. (Chase's all time favorite food) Sunday we went to the Houston Museum of Fine Arts to see the wonderful Modern Masters exhibit. There are no words to describe how awesome it is to stand in front of Van Gogh's Starry Night, or Matisse's Dance, or Picasso's She Goat. To say we were in awe is quite an understatement. I can promise you that everyone had a memory making visit. Next on the tour stop was…the Houston Japanese Gardens. I can honestly say that there is no place more peaceful for my soul than this little spot of heaven in downtown Houston. Thank goodness for me it is simply a brief walk from the house because we tend to visit it often. I got some great photos of the kids and I hope if you get a chance to visit the Houston area you will find a moment to stop by Herman Park for a visit. The Modern Masters exhibit will continue until January 4th. Believe me when I say it is worth the trip. We are back to the regular Houston routine… school, homework, Dr. visits and working out. The weather is amazing and we are enjoying as much time as possible outside. We send our love and best wishes and ask you to please keep us in your prayers. The wait is trying but…we are not in control of the timing and Chase is ready… "…Thy will be done…" Always, Carol

Friday, October 17, 2003
Things have been quite busy…where to begin?
10/3: While Shelby and Michael were at school, Chase, Kim and I decided to visit our friends at the DeMontrond dealership. (Check out the photos of Chase next to the life size poster of Yao Ming.) We had plenty of oxygen and the pager was on my hip but we choose not to lug our purses (and phones) in. That was a big mistake! Thank goodness we had let someone know where were heading. Michael fell off the slide and broke his arm. He was much calmer that we were and he even got to ride in the Fire Station #16 ambulance. In his eyes, this was an "addition" to our Houston Adventure. To quote the ER nurse, "That was a pretty impressive fracture". Mike arrived shortly after they paged the Pediatric Orthopedic surgeon. They were able to set it without surgery! YEA! Tom and the girls arrived late after Tara's volleyball game. We have had a full house!
10/4: Kim, Chase and I were invited to the "Hummer Happening". Oh, what an exciting day! Chase had the time of his life! We were riding in the front vehicle with the driving instructor. It had to be my terrific luck because…. We were the vehicle that got stuck. It took 2 Hummers to pull us out! The "Students" thought it was too funny! We met some amazing people and enjoyed our "DeMontrond Field Trip" once again! Thank You!
10/10 - 10/12: I received a phone call from my "savior" Tony. This was the man that was so kind to me the day that my car window was shattered. He wanted to drop by and bring me something. I had sent a thank you e-mail to the Safelite customer service department explaining what an amazing employee they have. Well… This company is a wonderful example of kindness! Safelite not only recognized Tony as an outstanding employee, they also shared with him my sincere appreciation and theirs for his kindness and great customer service. They also sent a box of wonderful goodies to Chase along with a very generous contribution to Chase's Medical Assistance Fund. If you ever find yourself in need of auto glass repair please remember Safelite. It is heartwarming to be acquainted with a company that still puts customer care at the top of the list! Due to a late birthday party that Shelby attended, Kim and Michael decided that it was too much to drive back to Georgetown for the weekend. I think they just enjoy our company so much they didn't want to leave us. After the party, the five of us decided we needed a trip to Olive Garden! Chase's favorite! I wish I had taken my camera. Shelby and Chase had us in stitches. The amazing love that they share is priceless! I think this is part of that silver lining! Tom and the girls brought Joe with them after Tara's volleyball game. Chase was so excited to be able to spend the weekend with his friend. Mike arrived on Saturday morning just as the McGowen family and Joe departed to get our Christmas photos taken. They did turn out pretty good. We enjoyed a very relaxing weekend despite the full house!
10/13 - 10/15: I have continued to battle with The Right Step drug and alcohol abuse treatment house that was responsible for my car window being shattered. I have been put off and told so many things that I don't know what to believe! It just angers me for them not to take responsibility for this $200 accident that was not my fault! At one point, I was told that they would split the cost with me but…I still haven't seen a penny! This is an extremely frustrating situation! Chase's Dr. visit went beautifully! He is maintaining his weight and his PFT's were not quite as good as last week but, this long with no IV's it doesn't surprise me. Chase continues to blow all of us away with his physical therapy sessions with Kim. He walked 1 ス miles on Tuesday on the treadmill. The weather was so beautiful and Chase was so energized when he got home that he and his teacher, Mr. Zimmermann, had class outside. We even took a trip to Herman Park that afternoon. We fed the ducks and the pigeons and took a train ride around the park. This was the most perfect weather we have had since May. Kim, the kids and I had our flu shots this week thanks to Uncle Bob who made the arrangements with his Dr.'s office. We urge you all to get yours! Not just because Dr. Mallory suggested proof of flu shot as admission to visit Chase, Houston is reporting the worst October outbreak in many years.
10/16: Chase is feeling pretty puny today! We both decided that it is time for IV antibiotics to begin again! We can be thankful for the almost 4 weeks reprieve. I want to express my sincere gratitude and thanks for the amazing time, effort and commitment that all of my dear friends have made on our behalf. The golf tournament is such a labor of love. I am constantly reminded that God has truly blessed us all. I thank him daily for the lifelong friends, new friends and family that he has so generously placed in our lives. There are times when the thought of our lives back in Austin gives us the strength to continue! My friends are one of my biggest blessings! All My Love, Carol

Saturday, September 27, 2003
The Craziness Continues!
After last Wednesdays adventure, Kim and I decided that we needed a little break. Our husbands came into town on Friday evening and we escaped for what we though was going to be a bit of rest and relaxation with our dear friend Pam. (Pam is my dearest friend from high school and like a sister to Kim and I.) Needless to say things did not go as planned! Pam drove into town and in less than 2 hours was very nauseous and could not go to dinner with us. Believe me when I say that the photos were as good as it got! Thank goodness we were staying at the Embassy Suites instead of being in the house close to Chase. Pam spent a very miserable night and returned to Austin in the nasty rainy weather still feeling extremely bad! She was unable to see Chase, missed the Texans football game, and we did not get our hair cut and colored. Due to the hair fiasco last month, we will not be attempting this on our own anymore! Thanks to Embassy once again for the wonderful hospitality. We truly enjoy our home away from home. The Texans lost the game but oh did we have a wonderful time! The seats were amazing!! We will never be able to thank the Krusee family or Reliant enough for their generosity! It was so awesome to watch Chase and Joe share this special event! I am constantly reminded how visits from family and friends boost Chase's spirits and keep him ready for the long road ahead.

Mondays visit with Dr. Mallory went very well. Chase's pulmonary function test was down from last week but is still pretty good over all. Dr. Mallory decided it was time to give Chase his flu shot and stated "anyone who wants to visit with Chase should be required to show proof of their flu shot as price of admission". I know this sounds pretty harsh but... due to what we are facing this makes perfect sense! We are all going to get ours next week. Tom and the girls are going to try to get theirs scheduled soon. I would suggest to anyone who thinks they might be around Chase in the coming months to please contact their Doctors office and explain the situation and they should be able to quickly take care of it. Our wonderful friend Jeannie the reporter from the Chronicle even has hers scheduled for the first of October.

The golf tournament, set for October 24th, is really coming together. I am so thankful for our amazing friends in the Austin area who have dedicated so much of their time and energy on behalf of our family. There are no words to express our sincere appreciation! They are still in need of items for both the live and silent auctions. If you, or anyone you know, might be in a position to help we would greatly appreciate your contributions. Please contact us through the web site with any new donations. The Lipstick for Life fundraising campaign sponsored by Shannon Briggs will be coming to an end September 30th (extended through October!). Please, make your purchases on line by clicking the lips to your right! I want to thank all of the amazing people we have gotten to know thorough the course of our Houston Adventure. We have been truly blessed! God has provided a tremendous neighborhood for us to live in and has surrounded us with wonderful new friends. Please continue to keep us in your thoughts and prayers. Carol, Kim, and Chase

Wednesday, September 17, 2003
Carol's Houston Adventure!
There are some things in life that are just meant to be shared. I truly believe that we are learning some very important lessons … Jeanie, the reporter from the Houston Chronicle called Wednesday morning at 11:00 and said she would like to meet us here at the house around 2:00 in the afternoon. Kim and Chase left to exercise at 12:00 as I finished typing and sending the weekly update to Denis. I then quickly got dressed and ran out the door at 12:30 to run an errand. I was only in the store for 30 minutes and came out to find my driver window shattered into millions of pieces but…still intact. I honestly could not figure out what to do. I called the police, the insurance company and AT&T mobile assist…then I began to call glass companies. No one could get to me and I could not figure out how to get to them! I finally called Safe-Lite auto glass. They said they could have someone there in about 2 hours. Well…as I sat in the passenger seat of the hot black Suburban with the driver door open because I was afraid to close it and get glass all over the inside of the vehicle…Kim and Chase had a lovely visit with the reporter Jeanie. 2:50 came and Kim needed to get Michael from school (Shelby had a play date) …Jeanie stayed with Chase until Kim returned at 3:10. At 3:30 I was so hot and thirsty and I had seen neither hide nor hair from the glass company, I asked Kim to bring me some water. She left Michael and Chase at home watching a movie and drove the 2 minutes down Montrose to bring me water. The minute she drove into the parking lot her cell phone went off…the kitchen was filled with smoke and it was filtering into the rest of the upstairs. Not too good for a kid on oxygen waiting for a lung transplant! Kim drove back to the house to battle the microwave fire. Just a little hint: when you cook a bowl appetite you must not wrap it with saran wrap and you must put the water in before you place it into the microwave and cook it for 5 minutes-rice burns! While Kim is emptying the house of the smoke two things happen … 1. I contact the halfway house next to where my vehicle is located to inform them that their yard company sent a rock flying while weed eating and shattered my window. A very nice man came and apologized profusely… I assured him no harm done. That was not easy to say seeing I had been sitting there since about 1:00 in the afternoon. He assured me his boss would take care of the replacement cost. 2. The house phone begins to ring… it is Houston Fox 26 news wanting to do a story on Chase for their 9:00 p.m. news. Today!! They want to be at the house at about 5 or 5:30. Kim tries to put them off until tomorrow but… today is the day! Meanwhile the awesome glass man Tony arrives. He quickly takes out the shattered window and cleans up the mess and begins to install the new glass. That is when we realize that the battery is dead. Tony gets everything fixed and is such the amazing gentleman… tries to find jumper cables for me. No such luck one kind man even drove to the closest service station and they did not have any either. I call AT&T mobile assist and they assure me someone will be able to assist me in less than 30 minutes. I don't think their dispatchers have any idea about Houston traffic. Tony meanwhile does not leave me, I think due partially because he called me a damsel in a dress and the fact that I am located next to the halfway house and the men have continued to stare out the windows watching as my day unfolded. Back at the lovely smoke filled house Kim turns on the attic fan, and with the boys, goes to retrieve Shelby. She tells Chase and Michael that there may be no more science experiments with out adult supervision. Kim calls me on my cell phone and insists that I try to hurry…because she doesn't want to be interviewed and I tell her that even if I get there and they are still there that I look and smell very bad. She assures me that televisions are not scratch and sniff yet! Back in the parking lot… wonderful Wallace arrives to start my car. I thank both of my saviors and assure them that I would not have made it thru the day with out them! Too bad Mr. Wallace Gomillion could not have stayed stuck in traffic for another 30 minutes. Because… as I walk into the smoke smelling house at 6:30 the camera man and reporter assure me I look fine and they want to interview me! I will not ask if the day could have been any worse! It sure could have. The microwave is toast! The boys are fine! My window is fixed! The glass is still in the door but awesome Tony did not charge me a penny for labor! I do not have to dread the interview! It is over and done! The firemen that we visited with on Saturday are going to install the fire alarms in the house! Free of charge! I'm sure the lecture will be free of charge also! We survived the day; I am still in awe of how we made it through without major tears. I can assure you that if I had thought someone had deliberately vandalized my car this would have been a whole different story!

Tuesday, September 16, 2003
Life is not a dress rehearsal....
It never ceases to amaze me at how very much a 13 year old can teach us if we will just listen, watch, and learn. When I grow up I want to be as courageous and strong as Chase! Last week we met with a reporter from the Houston Chronicle. What an awesome lady! She is doing a story on Chase and our "Houston Adventure". She has spent a tremendous amount of time and energy getting to know Chase and our situation. She has joined Kim and Chase at the gym to see his work outs, she and a photographer have spent time here at the house with us and she joined us at our weekly visit with Dr. Mallory. I will let you know when the story will appear.

We spent a wonderful weekend with our dear friends the Gilberts. Saturday we all took a field trip to FIRE STATION 16. What a wonderful group of people. I think the adults enjoyed the trip as much as the children. Mr. Johnnie let us know that they are the best of the best! (Mr. Johnnie was the Assistant Fire Chief here in Houston and my Mother's significant other for many years before she died in 2001.) I think all of us were amazed at how things really work at a fire station. We actually got to see fire trucks and ambulances go out on calls. Sunday, Tracy and I took the boys to Dave and Busters. (I can tell you that after 18 weeks it is getting harder and harder to find things to do indoors. I am open to suggestions.) The boys had a wonderful time and the food was actually good. Mike and the Gilberts left about 4:30 on Sunday afternoon and it was not easy to tell everyone goodbye.

I can see how very much Chase needs visits from friends and family from Austin. It helps him feel connected to our life back in Austin that we hope to return to someday. We met Chase's homebound teacher, Mr. Zimmermann. I foresee the beginning of a wonderful relationship. School for Chase will begin this Thursday. I think this will give him something else to focus on other than waiting for the pager to go off. As much as we can, we are planning a trip to the opening Houston Texans game this Sunday. We would rather the pager go off and be at the hospital but... We thank each of you for your continued prayers and support. We are truly blessed to have you on our side. Please continue to keep our entire family in your prayers... this adventure is truly taking a toll on us all, Carol McGowen

Friday, September 5, 2003
Life in Houston remains a challenge.
We continue to wait as patiently as possible for the pager to go off. As many of you know I am not the most patient person in the world. I think this is one of the many lessons God intended for me to learn from our experience here. We have been blessed with visits from family and friends from Austin. Believe me when I say how necessary these visits are for Chase's mental well being. Kim's children, Shelby and Michael, are a joy to have around and help keep us on a more "normal family schedule." They are truly enjoying school and their life in Houston. I am so thankful. They miss their Daddy, family and friends in Georgetown but are adjusting to our "Houston Adventure" better than I expected. Monday Chase began to run a fever so he is back on IV antibiotics around the clock. We know at this point that two weeks off is a bit much. Chase and Kim continue to work out at the gym three days a week. When he is feeling OK he is able to walk a mile! What a major accomplishment. I want to thank all of you for keeping us in your thoughts and prayers. Please know at times it is hard to update the web site saying, "we are still waiting." Please continue to pray for God to bless all of us with a major dose of PATIENCE AND PEACE. I have to remind myself over and over again,"Thy will not my will be done."
Always,
Carol

Tuesday, August 19, 2003
ROLLER COASTER RIDE!

There have been so many things that have happened since my last update. I will try to touch on the high spots. Thursday 8/7 Chase was invited by DeMontrond Auto Dealership to attend the Houston Astros game against the Mets! Little did we know what this adventure would actually entail! Scott, the Hummer sales manager met us along with Yvette, the advertising and promotions coordinator for the Astros, at the stadium and took Chase for one of the most exciting nights of his life. We (Chase brought along 5 of us to share in the excitement) were taken to meet the baseball players on the field. Oh my, did his eyes ever light up! The players were awesome and gave him the red carpet treatment! Jose Vizcaino took Chase under his wing and made the evening a tremendous success. He personally introduced Chase to many of his teammates and had them autograph several items for him, including an Astros jersey that he gave to Chase. I can never thank them enough for their kindness. I am thankful that I wasn't a crying fool out there on the field next to Chase. When you see his face in the photos you to will know what I mean. The photos are awesome. (I received special permission to post the ones on the web site) THANKS again Scott, DeMontrond dealership, Yvette, Jose and the entire Houston Astros Team for taking us under your wing! Ya’ll are truly amazing.


We have had a wonderful time visiting with our friends and family from Austin. The Gilbert's were here for a quick visit and were able to enjoy the Astros with us. Taylor stayed for a couple of extra days and returned ready to start school (I hope). The Long family came to entertain us. It was great to see all of them before their lives get busy with school stuff once again. Lara and Cindy were able to join us for a much needed girls visit. I know they came to see Chase but believe me, Kim and I were as excited about their visit as Chase was.

The weather is still very hot and humid. We were able to take a little retreat to the local Embassy Suites thanks to their general manager-he has taken us under his wing. I think we all needed a little break and sometime away from the house here. I can’t tell you what a treat it was to sleep in central air. (We are very excited to have wonderful new air-conditioning units at the house that are cooling beautifully.)


Thursday August 14th the pager went off. There are no words to describe what happened to my heart. After talking with Peg, the transplant coordinator, Kim and I woke Chase and told him the good news. He was so excited. I truly did not sense any fear from him. Thus began our Thursday morning. We talked to various people on the phone, Chase was most excited about talking to MIX 94.7 and letting them know what was going on. We gathered our things from the Embassy Suites and headed to the house to wait for further instructions. Tom and the girls came directly to the house and were here when we received the news that the organ procurement team did not feel that it was in Chase’s best interest to accept the organs. OH MY I can’t begin to explain how very difficult this is to express even now. I am so pleased that Chase is ready for the transplant. We continue to pray for his mental stability in dealing with this situation. I think we need to pray for mine too. There are just so many aspects to consider. First and foremost we must always remember, it is not my will, but thy will be done. That pretty much sums it up! Please keep all of us in your prayers, not just us but also any and all potential donors. They need our prayers also.

We had a “Mini Family Reunion” this weekend to take our mind off things. The Briggs' family stopped in for a brief visit on Thursday night. Our cousins from Dallas brought Kim’s children on Friday. Tom and the girls stayed until Sunday, and Kim’s husband was able to spend several days with us also. Kim’s children started school in Houston ISD today, and it went beautifully! They had a wonderful day! That is just one more example of God’s amazing blessings. This is the first time they have been in the public school system as well as not having their Mom, a teacher at their previous school, Zion Lutheran right down the hall. Michael said it was like summer camp. I hope the rest of their stay there goes just as smoothly. I so need for them to be happy. They have all given up so much for us. I am so blessed to have Kim as my little sister. Tara and Casey started school this morning also. I am so thankful that Tom was able to arrange his schedule in order to take them. It was tough not being there. I know we are all where we need to be but the situation is not easy for any of us. Thanks to all of our wonderful friends who are helping us take care of our precious daughters. I can’t imagine where we would be without each of you!

Chase’s visit with Dr. Mallory went great today. He is stable and holding his own at this point. Right where we need him to be. We should be able to get off the IV antibiotics for a little while. Oh will it be wonderful to be in bed before 2:00 in the morning and to sleep past 6:00 a.m. Chase went to the gym with Kim this afternoon and walked a mile on the treadmill and then did abdominal crunches among other things. Boy was he a ball of energy when he returned. There were several times today I had to remind myself that he is a 13 year old boy and that if he wasn’t driving me crazy he would not be normal.

I am sorry it has taken me so long to send this update. It is still difficult to find the words to express what is going on in our hearts and heads. I want to thank each of you for your continued love and support! Dr. Mallory asked today when we would have more visitors from Austin. He feels that this is what is keeping Chase in such positive spirits. We miss you dearly and can’t wait to be back home where we belong! I was born and raised in Austin, and except for a short period of time in El Paso, have lived there all my life. I can honestly say I don’t ever want to live anywhere else again!

ALSO, I want to thank Maxwell Dodge for their wonderful contribution to Chase's Medical Assistance Fund. We are continually amazed at how God provides.
Always, Carol

Tuesday, August 19, 2003-Web designer receives "Exceptional Service Award" from the National Transplant Assistance Fund. Designer Denis McGinness received the award "in recognition of your dedicated devotion and contributions to the goals of the National Transplant Assistance Fund and in Honor of Paul Chase McGowen." Mr. McGinness said, "it has been very gratifying to work with Chase, Carol, the family and their friends in meeting the challenges of transplantation. I am honored by the award and I wish to thank Judy MacGregor from the NTAF, Carol and of course Chase for his courage and determination. Thank you all."

Friday, August 8, 2003 - Life in Houston is HOT!! We are having a tough time getting adjusted to the combined heat and humidity. There are days when oppressive is the only definition. Chase is on IV antibiotics again. I am so happy to see him feeling better. It is amazing how quickly they help him bounce back. Needless to say I am tired, but the late nights and early mornings are well worth the cost! This past weekend brought many teary goodbyes. Tom and Tara came for a visit. They returned to Austin with Joe on Sunday. I cannot thank his family enough for letting us keep him for almost two weeks. Chase and I sat on the stairs and we were extremely sad after everyone left. I was able to cheer him up by explaining that Taylor would be here for a surprise visit this week. So much for the surprise! Michael and Shelby each spent some time with us last week also. It is mind blowing to see how Mike (my brother-in-law) has managed to juggle everything in order for my sister Kim to be here for Chase and I. There are no words to express our appreciation. Casey was here for almost a month. It was very difficult to watch her leave. It is tough knowing I will not be home to send both of the girls off to school this year. This seems so trivial in the midst of everything else we are facing but it is exceedingly difficult! Tracy and Clay plan to be here this afternoon and the Longs intend to arrive tomorrow. We will all enjoy our time with our friends. I am hoping that next weekend Tom will be able to bring the girls and we can have a little bit of family time before the school bells ring. Tara is playing volleyball again for McNeil high school and as of yet does not have her practice schedule. We simply can't make any plans. Our hope and prayer is that the pager goes off and we are in the hospital by the time you read this.

I failed last week to include the good news! I had applied for the Boomer Esiason grant several weeks ago. We were excited to receive the call that Chase had been approved to receive a grant from their foundation. They usually contribute $3,000 to $4,000 for transplant related expensed once the transplant has been completed. I want to express my thanks to The Boomer Esiason Cystic Fibrosis Foundation and to Maryanne Willett for sending me the link to their web site! It never ceases to amaze me to see Gods hand in every aspect of this situation. I would think it normal for a person to question or doubt God in the midst of what we are all facing, but amazingly enough, I see our strength and faith growing. Chase's spiritual growth has been tremendous. Please continue to pray for our entire family. We have a very bumpy road ahead but with constant prayers and support I know we will make it, Carol.

Thursday , July 31, 2003 - We received wonderful news today that Chase has been approved for 40 points on the liver list. THIS IS A BIG DEAL. The higher the points the more priority status you have. It is my understanding that most children here in Houston do not have that many points when they are placed on the list. Due to the fact that Chase is waiting for both lungs and liver this too will expedite the process. We are expecting the pager to go off very soon. Chase is ready both physically and mentally for this to happen. He is quite tired these days but does seem to perk up in the evenings. (oh yes my little night owl) I was so tickled to see he and Joe "chasing" each other last night and laughing from their toes. I was just hoping that neither of them tripped over the oxygen cord. I think most of us as parents take these things for granted until you see how very fragile life is and how very quickly it can be snatched from you. The sound of these two 13 year old boys laughing will be with me forever. I can't thank Joe enough for being here to help take care of Chase. Joe is the medicine that Chase's heart and head needs right now. Keep us in your prayers! Carol

Tuesday , July 29, 2003 - Chase Test Drives A Hummer!

THE WAIT CONTINUES... Things have been quite busy in Houston. I can not begin to describe what a relief to receive the Official letter from Jamie, the Liver Transplant Coordinator, that stated Chase was on the list. It somehow made a difference having a tangible document. THANK GOD!! I have decided to use NTAF to help raise the necessary funds for Chase's medical care. It has become imperative that we have a 501c3 in order to obtain corporate donations and to be entitled to the $25,000 matching grant that has been discussed. I have tried many different paths and kept coming to dead ends, this decision was for the best! I want to thank NTAF for their assistance. I used their web site from the very beginning to obtain essential information. I could not have made it through the first weeks after the "Chase needs a lung transplant" conversation without their web site. The business cards are at print stage. I have also discussed with a dear friend the possibility of creating buttons with Chase's logo and web site, she told me we should be able to get this underway soon. Things are moving nicely! Now to the fun stuff: Casey has been able to stay for the past several weeks. It has been wonderful to have at least two of my children under the same roof. Tara is home in Austin with the Longs. Thank you for looking after my precious daughter. Visits from our Austin friends and family are what keep us going when things get tough. Chase's inability to handle the heat limits his choices of outings. With visitors from Austin in tow we have had a behind the scenes tour of Reliant Stadium, eaten at a Houston landmark, James's Coney Island, gone to see the newest Lara Croft movie, spent the day at the Natural Science Museum including the Imax of the Serengeti, had a wonderful sea food dinner at Goode's Seafood then enjoyed a trip to The Marble Slab, where Chase ate all of his ice cream (Chase added that part). This is a lot for a little boy who is struggling to breathe, but it sure keeps his heart and head in the right place. Thanks to each of you for your continued prayers, love and support. We need them. Chase had his weekly visit with Dr. Mallory yesterday. His temperature was up to 100.9. It was definitely time to begin the IV antibiotics once again. His little body is continuing to deteriorate. He is struggling to consume enough calories, even though he gets anywhere from 2000 -2500 calories per night in his drip feed. He tires so easily that we must use the wheel chair when we intend to be gone from the house for extended periods of time. Dr. Mallory hit the nail on the head when he stated "it is time for the transplant to happen." I have two very distinct prayer requests to make-Please pray for Chase's doctors! And please pray that Chase continues to be emotionally ready for what ever comes his way.
Always,
Caro
l

Sunday, July 27, 2003

Letter From Doctor George B. Mallory Jr.

Director, Lung Transplant Program, Texas Children's Hospital

Photos from the Neighborhood Art Fair Fundraiser

Chase's Trip to Reliant Stadium

Friday, July 25, 2003 - Web Site Announcement

Dear Family and Friends,

Chase's web site is up and running. I am so very amazed at the final product. There is no way to ever express our sincere thanks and gratitude for the wonderful job that has been accomplished in such a short time. Denis McGinness is the web designer that went way beyond our expectations to create this professional, informative web page. Please place this site on your Favorites list so that you may visit it often. I will be posting both weekly updates and new photos on the web pages. If you or anyone you know is looking for an absolutely amazing person to design a web page for you please keep our dear friend Denis in mind. I want each of you to realize that this man knew nothing of Chase, our family, or our situation before he committed to doing this site for us. Mike Zimmerman worked diligently providing and verifying information. It simply would not have been created with out these two wonderful men. GOD IS GOOD AND OH DOES HE PROVIDE.

If you are interested in business cards with the web address, I have included a sample that I think is the final draft! I would greatly appreciate it if you would be willing to share them with all of your contacts. I will be happy to send you as many as you think you might need. Please send me an email response with the number of cards you would like. We will also have pamphlets produced in the near future that include some of the same information that is on the web site. We could never do this without the wonderful loving support from our family and friends.

We continue to struggle day to day. Please keep us in your prayers.

Sincerely,
Carol and Tom, Chase, Tara and Casey McGowen
Kim and Mike, Shelby and Michael Zimmermann

Denis McGinness
Design
Graphics, Photography & The Web

Email

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Tuesday, July 22, 2003 - I had a very long conversation with another mom last night who's lawyer friend was able to establish the 501c3 status in just a very short time for her son. (he too has CF and in currently on the liver transplant list) Chase is set for blood work early this afternoon and hopefully by the end of the day he will officially be on the liver transplant list. (I continue to think he is already on the list but hopefully today will be the day).

Wednesday, July 16, 2003

Liver Transplant Approval

Hello Dear Friends and Family,

We had a wonderful visit with the liver specialist today. Tracy went with Chase and I to Dr. Karpin's office. Everything is in order, they have received the much awaited approval from the insurance company. Chase should be placed on the Liver Transplant list in the next day or so. This entire time we have been working to get the insurance company to approve the triple organ transplant. Even if the insurance money is running short it is imperative that they approve the transplants or they could refuse to pay for any of the surgeries. We are feeling so much better after today's visit.

Dr. Karpin is an awesome man, and to think he is one of the world's best! I ask you to keep us in your prayers. After he is listed for the triple organ transplant things should go very quickly. Dr. Karpin stated again that this is a very rare surgery, only 12 ever done in the United States, 5 of which are pediatric and only about 18 in the entire world. I can feel very comfortable that we have some of the best doctors in the world taking care of my son. It has been suggested that we should look to a church organization to establish a Chase McGowen Medical Assistance Fund. We could then use their 501c3 for corporate donations. The funds in this account would once again be available for Chase's medical bills as long as he needs, after that the money would be kept in our community to assist other children and families in need. This would become the Chase McGowen Memorial Fund. What a better way to honor my son. We hate to admit anything negative would or could happen but as the doctors tell us we must be aware of all the possibilities. I know that going through a church would mean that they would have to agree to oversee and manage the account and to pay the submitted medical bills, but they would not take a percentage and we would be assured that the money that our community raises stays in our community. This has been such a heart felt battle for me to sign on with one of these companies, who in the event of Chase's death take everything. It is our amazing friends and families who have given so much to help us that I want to ask your guidance to make this much needed decision. If you know of any reason this can not be done or have any other suggestions please let me know. I intend to contact Bethany United Methodist Church in the morning. I hope all is well. We miss Austin more than you can imagine.

All our love,
Carol and Chase

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Life Pre-Transplant: Meet 13 year-old Chase McGowen, a typical teenager who digs music, pizza, teasing his sisters and cutting up with friends. One thing sets Chase apart from being your "typical" kid though; he has cystic fibrosis.

Chase struggles daily with things we don't even think about. Things like breathing and fighting off common infections. But Chase is determined stay healthy and alert, listening for the pager that will summon him to the hospital for the transplants that will prolong his life.

Chase is currently in Houston under the care of the Children's Medical Center, scheduled for lung and liver transplants to secure his life. This web site helps keep friends and family apprised of Chase's condition through personal insights and updates from Chase's mother Carol.

We are also hoping to facilitate donations and promote fund-raising campaigns to meet the non-covered medical expenses and the day-to-day costs encountered in dealing with Chase's illness.

Chase has a growing support group of family, friends, doctors, medical professionals, sports stars and folks he's never even met. Please join us. You CAN make a difference. Your decision to donate will have a very positive impact on Chase and his family. Promoting or volunteering for fund-raising is also extremely beneficial. Telling your friends and family about this web site will spread the word about Chase and cystic fibrosis. Your prayers and meditations for this cause are very welcome.

Why Donate? Due to the extensive medical bills generated during his life, Chase will exceed his lifetime medical cap during the transplant process. It is estimated that costs for the transplant and post-surgery care will generate medical bills in excess of $800,000 over what insurance will cover. For the donation options including quick and easy-to-use links via PayPal, see the Donations page. For detailed explanations and important facts see the "FAQ" page.

Although much of the information on this web site is devoted to the trials and tribulations of dealing with cystic fibrosis, it's also about victories great and small, challenges met and overcome. Chase has shown great character, courage and determination and we are very proud of him.

If you have comments or questions please "Contact Us".

Thank You for spending time with us.
The McGowen Family

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A letter from Chase's Uncle Mike:

July 7, 2003
Dear friends,

I have something to bring to you that I ask that you prayerfully consider.
I have a nephew, Chase McGowen, who is 13 years old. He has been battling Cystic Fibrosis his entire life. His normal life includes multiple breathing therapy sessions per day, taking enzymes with everything he eats (to aid digestion), being attached to a night-time feeding tube, taking multiple medications and being tethered to an oxygen generator when at "home" and using tanks of oxygen when away from home. Chase is no stranger to hospitals. He has been in and out of hospitals 2 to3 times each year for "tune-ups" where they beef him up and maximize his breathing capabilities. Within the past year, Chase's health has deteriorated. He has been in and out of Brackenridge Hospital over 10 times for collapsed lungs. Each of these hospital stays has been critical. Chase even stopped breathing once in ICU but was resuscitated. The doctors classified Chase as having chronic lung failure and recommended that he get on a transplant list.

The decision was made to move Chase to Houston and put him on the Lung transplant list at the Children's Medical Center. Chase, his mother (Carol) and my wife (Kim) moved to Houston in mid-May and are caring for Chase and living near the Children's Medical Center. After evaluation by the transplant team, it was determined that Chase also needs a liver. Chase is currently on the Lung transplant list and is expected to be added to the Liver transplant list by the end of the week. Due to the extensive medical bills that he has generated during his life, Chase will exceed his lifetime medical cap during the transplant process. It is estimated that costs for the transplant and post-surgery care will generate medical bills in excess of $800,000 over what insurance will cover. This includes estimated post-operative rehabilitation and anti-rejection medication for five years after the surgery.

Chase's Dad is continuing to work in Austin (maintain medical insurance) and raising his two sisters. I am working and living in Georgetown and looking after our two children. We alternate visiting our wives and Chase in Houston. What can you do to help?
Please pray for Chase, his immediate and extended family and the health care professionals that are working to keep him alive.
If possible, please contribute to a Transplant or Medical Assistance Fund being set up for Chase. Details on both can be found on a web site being set up for Chase at WWW.HELPINGCHASE.COM. The best opportunity for maximizing your contribution is to donate to the Transplant Fund through your employer and apply for matching funds. Other fund-raising efforts will be posted on Chase's web site.

Please feel free to contact me if you need additional information and propagate this email out to everyone you can think of.

Regards,
Mike Zimmermann

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