jon03015 (Austin) MAW/GTKTW, Waiting for a date

Hi there! Just wanted to add that I'm so glad Austin will be getting his wish. Brooke had Wilms--a form of childhood cancer and it was centralized in one of her kidney. It was such a large mass that they ended up removing her kidney, but she is doing wonderfully with just one. In remission now!! I hope that Austin's life will be much easier once that transplant takes place. Great news that his uncle was approved!! :):dance3::woohoo::cool1::banana:
 
I am so glad to hear that Brooke is in remission. Yes, we are so excited for the transplant!!!!
 
We found out this last week that Austin's uncle is approved to donate his kidney!!! We are anxiously awaiting the date and hope to find out more this week!!!!!!:cool1::thumbsup2:dance3::woohoo:
 

We found out this last week that Austin's uncle is approved to donate his kidney!!! We are anxiously awaiting the date and hope to find out more this week!!!!!!:cool1::thumbsup2:dance3::woohoo:

That is just the most exciting news!!! What a blessing for your family and I can't WAIT to hear more!!!! CONGRATULATIONS on great news, I will be praying!!!
 
We were just informed that Austin will have his transplant on August 2nd. Quite literally this will be his other birthday, a new lease on life. A gift. We are a mix of emotions, but I think that we are mainly in disbelief. We worked really hard to get to this point, and felt sometimes we were pushing just for pushing's sake since things were at a stand still for so long, but now it is right around the corner. I try not to think of how scary this is, and just think of all the great things that will be a result of the transplant. When I take any time to really think about it I get really scared and sometimes I even get sick to my stomach. So I try and keep busy, and distracted. Ben and I were talking today about how we are kind of in survival mode. I have to confess that I have not really made dinner in 2 weeks, or really cooked at all. So yes we are in survival mode right now, but happily so. What an exciting time for our family! It is scary, but I think that I am going to keep myself in denial and just not think about it.
I am so grateful for this gift from Jacob, whenever I talk to him I really don't know what to say. What can you say to someone who is giving you such a precious gift? I thank him but words fail me beyond expressing this simple declaration.
We thank you for your continued prayers.

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Emma at a fund raising car wash for Austin's transplant. Look closely and you will see her shirt says "Austin" in a kidney shape.


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Austin on the beach at Ventura with his "pack pack" feeding back pack.

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Our newest family photo.

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My beautiful children.
 
:wave2:

Joining your thread!

WOW, what an incredibly tough journey your guy has had!! 3 weeks until his new birthday, I will be praying for no complications for him or his uncle and quick healing!

Will his other digestive issue recover hopefully so he could someday have his G-tube removed too?

Thanks for sharing!!
 
:wave2:

Joining your thread!

WOW, what an incredibly tough journey your guy has had!! 3 weeks until his new birthday, I will be praying for no complications for him or his uncle and quick healing!

Will his other digestive issue recover hopefully so he could someday have his G-tube removed too?

Thanks for sharing!!

I was told that his appetite will return after his new kidney starts to work. We will keep his G-tube until he can swallow all of his anti-rejection meds. So I am guessing he will have it for the next year or so. For all the annoyances it causes I am really grateful for that G-tube! We don't have to worry about how to get the meds in him, and can slowly transition him into taking meds. popcorn:: With that said I am real excited for him to be able to eat again!
 
T-minus 2 days and Austin will be receiving one of the best gifts ever!!! We had our last transplant appointments Monday. We had to:

1) Have labs drawn (11 viles of blood!?!) for the last cross match. They combine his blood and Jacob's to see if any antigens develop. This was done a while ago, but they double check to be sure that nothing has changed, or that any mistakes were made earlier. They also run other tests.
2) Have a chest x-ray.
3) An EKG.
4) Hospital pre-admidt.
5) Meet with the surgeon.
6) Meet with the nephrologist.
7) Go to dialysis.

We left around 7 am and got back around 8:30. It was a long day, but we felt very accomplished, and Austin did a great job!!!
While were at the hospital pre-admission I received a phone call from transplant stating that I needed to get over to the transplant clinic at once, that the Dr. I needed to see was there. I was some-what annoyed since I had a lot of stuff with me, a rambunctious little boy, had just finally had our name called to go into pre-admission, and now had to leave and carry everything over to a new building. But I hurried over anyway and was greeted by a very unassuming quiet Dr in his long white coat. He informed me that our surgeon was on sick leave and he would be replacing her. I was not very happy to hear this since it was so late in the game. I asked him how many transplants had he preformed and he informed me "over 2,000". Then I asked "how many pediatric?". He couldn't give me a full answer, he said something like "oh, well, I have done quiet a few". So I asked how to spell his name and explained that my family would like to know more about him, so basically to look him up. He smiled and told me he would do one better and gave me his card. He was very kind and patient as I continued to question him on the process. He was very gentle with Austin. I like him, I told Ben. He asked to see his card (which I had not bothered to look at) and informed me that he was the Surgical Director! HA! I had been grilling the guy that probably taught that surgeon that he replaced! I laughed at myself, and now it totally made sense that transplant wanted me to hurry over to see him, he doesn't have tons of time I'm sure. Yeah I kind of felt dumb, but sure am glad that he was patient with me and answered all of my questions. That is my kind of Dr. So I am actually kind of happy with this new development, and we feel pretty blessed.
Austin will go in on Monday morning, have dialysis, go on a clear liquid diet, get an IV started. Jacob (his Uncle and donor) is coming in Sunday night, and will spend Monday night in the hotel room. The surgery will take about 4 hours for Jacob and around 6 for Austin. They will be in operating rooms right across the hallway from each other.
Jacob's recovery will be about 24-48 hours before he can leave the hospital, and then another 6-8 weeks before any heavy lifting. Austin will be in the hospital for a week or 2, and in isolation for about 2 months. He will have labs drawn Mon and Thurs for a couple of weeks, then only on Mon for a couple of months, then every 2 weeks, then every 3, till he will only need to go once a month. All the lab work will help the Dr.'s adjust his immuno-suppressants to where they need to be. He is on immuno-suppressants right now, so we are in isolation right now. I woke one day with a runny nose and almost had a heart attack, thankfully it was allergies. I have NEVER been so thankful for allergies! If any of us gets Austin sick we might have to move the transplant.
They said that if all goes well we can go to Wa for Christmas!!!!! But that Austin needs to stay out of big crowds for about a year, so no Make-A-Wish trip for 12-18 months post transplant, or Disneyland, or other crowdish places.
Thank you all who pray for our little guy, hopefully he'll come out on the other side of this swinging, and ready for the rest of his life.
033-2.jpg
Emma, in her Disney gettup!
045.jpg
Austin loves to dress up!
070.jpg
My two Monkey's
 
T-minus 2 days and Austin will be receiving one of the best gifts ever!!! We had our last transplant appointments Monday. We had to:

1) Have labs drawn (11 viles of blood!?!) for the last cross match. They combine his blood and Jacob's to see if any antigens develop. This was done a while ago, but they double check to be sure that nothing has changed, or that any mistakes were made earlier. They also run other tests.
2) Have a chest x-ray.
3) An EKG.
4) Hospital pre-admidt.
5) Meet with the surgeon.
6) Meet with the nephrologist.
7) Go to dialysis.

We left around 7 am and got back around 8:30. It was a long day, but we felt very accomplished, and Austin did a great job!!!
While were at the hospital pre-admission I received a phone call from transplant stating that I needed to get over to the transplant clinic at once, that the Dr. I needed to see was there. I was some-what annoyed since I had a lot of stuff with me, a rambunctious little boy, had just finally had our name called to go into pre-admission, and now had to leave and carry everything over to a new building. But I hurried over anyway and was greeted by a very unassuming quiet Dr in his long white coat. He informed me that our surgeon was on sick leave and he would be replacing her. I was not very happy to hear this since it was so late in the game. I asked him how many transplants had he preformed and he informed me "over 2,000". Then I asked "how many pediatric?". He couldn't give me a full answer, he said something like "oh, well, I have done quiet a few". So I asked how to spell his name and explained that my family would like to know more about him, so basically to look him up. He smiled and told me he would do one better and gave me his card. He was very kind and patient as I continued to question him on the process. He was very gentle with Austin. I like him, I told Ben. He asked to see his card (which I had not bothered to look at) and informed me that he was the Surgical Director! HA! I had been grilling the guy that probably taught that surgeon that he replaced! I laughed at myself, and now it totally made sense that transplant wanted me to hurry over to see him, he doesn't have tons of time I'm sure. Yeah I kind of felt dumb, but sure am glad that he was patient with me and answered all of my questions. That is my kind of Dr. So I am actually kind of happy with this new development, and we feel pretty blessed.
Austin will go in on Monday morning, have dialysis, go on a clear liquid diet, get an IV started. Jacob (his Uncle and donor) is coming in Sunday night, and will spend Monday night in the hotel room. The surgery will take about 4 hours for Jacob and around 6 for Austin. They will be in operating rooms right across the hallway from each other.
Jacob's recovery will be about 24-48 hours before he can leave the hospital, and then another 6-8 weeks before any heavy lifting. Austin will be in the hospital for a week or 2, and in isolation for about 2 months. He will have labs drawn Mon and Thurs for a couple of weeks, then only on Mon for a couple of months, then every 2 weeks, then every 3, till he will only need to go once a month. All the lab work will help the Dr.'s adjust his immuno-suppressants to where they need to be. He is on immuno-suppressants right now, so we are in isolation right now. I woke one day with a runny nose and almost had a heart attack, thankfully it was allergies. I have NEVER been so thankful for allergies! If any of us gets Austin sick we might have to move the transplant.
They said that if all goes well we can go to Wa for Christmas!!!!! But that Austin needs to stay out of big crowds for about a year, so no Make-A-Wish trip for 12-18 months post transplant, or Disneyland, or other crowdish places.
Thank you all who pray for our little guy, hopefully he'll come out on the other side of this swinging, and ready for the rest of his life.
033-2.jpg
Emma, in her Disney gettup!
045.jpg
Austin loves to dress up!
070.jpg
My two Monkey's

Will be thinking of you all in the next few days!! Praying for a speedy & full recovery for Austin & his Uncle!! :hug:
 
Thanks Carrie!!! We hope so too. I am so glad to be making a connection on here, reading these boards are helping me be distracted from my nervous jitters over Tuesday.
 
How is Austin?? How are you guys doing?

I hope all is well!!! :hug::hug::hug::hug:
 
:love: Your precious family is in my prayers. I am hopping on for the ride

Good luck! My prayers are with you.

:hug:Thinking of your family today:hug:

How is Austin?? How are you guys doing?

I hope all is well!!! :hug::hug::hug::hug:

Thank you all so much!!! Austin is doing really well. His recovery is going a little slower than anticipated but he is good. I have been getting sick (gosh darn it!)! But we are pretty sure it is just allergies. Our donor is sick though, we are praying that he will be okay and there are no complications. Trying to motivate Austin to want to eat drink has been hard, but he'll get there. Thank you for your support!!!
 
hope you are ALL feeling much much much better at your house!!!!

Thank you! We are so relieved that everything is going well. Jacob is feeling much better, and Austin might go home on Tuesday. We feel incredibly blessed!:thumbsup2
 
Just found your report. Hope all is going well with Austin.:hug:
 
Just caught up and joining along. Praying for your family. I hope that Austin is getting stronger every day.
 














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