To Kidney - and BEYOND! MAW PTP

Oh and danced and jumped up and down when they said it wasn't leukemia! :worship: He's already on three immuno-suppression meds for his kidney - didn't want to add chemo to the mix. :worried: One day, we'll get to that point - as his meds he takes (cellcept and prograf especially) are highly carcinogenic with lymphomas and skin cancers being the real threat. We do cancer screening labs every 3 months at kidney clinic. When we get to that point, we'll deal with it like we've dealt with all the other not so pleasant stuff. But I'd much rather NOT deal with it while he is still young and still traumatized by the medical world that he only sees as a cruel form of torture instead of a place to make he feel better. SO- off my soapbox! :mic:
Thank you - I think they look quite cute too! I'll be popping over to your PTR this evening. You are SOOOOO close to your date!! Has your brain turned into anticipation mush yet??? :banana::banana:

So it sounds like we have two little guys who have a lot in common. My wish child turned 4 in June and we just celebrated the 2 year anniversary of his kidney transplant! I'm so glad to hear Matthew is doing ok. Shawn-Brooklyn is also on cellcept and prograf and we too had a similar scare regarding enlarged lymph nodes that his doctors feared were cancerous. It just seems like it is always something. I can't wait to hear more about your upcoming trip! You all deserve it!
 
So glad that you found a Dr. that was willing to give your precious Matthew the chance that he deserved. So sorry that your family has gone through so much. Happy that Matthew is getting his wish. :)

Sorry the Parvo complicated everything, and glad that it wasn't even more serious. We know what's it like to have the Drs. suspect leukemia (though Angel's eventual diagnosis was no better).

Glad Matthew felt better in time for Halloween - the boys look great in their costumes.
 
So it sounds like we have two little guys who have a lot in common. My wish child turned 4 in June and we just celebrated the 2 year anniversary of his kidney transplant! I'm so glad to hear Matthew is doing ok. Shawn-Brooklyn is also on cellcept and prograf and we too had a similar scare regarding enlarged lymph nodes that his doctors feared were cancerous. It just seems like it is always something. I can't wait to hear more about your upcoming trip! You all deserve it!

Matthew's 4th b-day was in June! And a big Woohoo for 2nd kidney-versarys! We are looking forward to kidney-versary number 3 in January! Stoked!:dance3:
Are you on facebook? I'm an admin of a champions for renal warriors support page on there. Let me know if you are interested in joining. Looking forward to reading about your trip!:goodvibes
 
So glad that you found a Dr. that was willing to give your precious Matthew the chance that he deserved. So sorry that your family has gone through so much. Happy that Matthew is getting his wish. :)

Sorry the Parvo complicated everything, and glad that it wasn't even more serious. We know what's it like to have the Drs. suspect leukemia (though Angel's eventual diagnosis was no better).

Glad Matthew felt better in time for Halloween - the boys look great in their costumes.

Thank you! :flower3: I still remember the doctors rolling me into the OR for the c-section and I asked for one of the shunts they had placed in Matthew. (they had placed four of them between weeks 18 - 23). I still have it in his baby book. Oh the things I have saved - I'm sure people think I'm NUTS!:crazy2: (shhhh - I'm am - just don't tell anyone):rotfl2:
Looking forward to reading more about your trip and wish process! Hope things are well.:)
 

So - now that things are calming down, (knocking on my head!):eek: I'm starting to plan! I've written down the parties for each night at GKTW and the extra magic hours at the parks. This will be the first time since the 1980's I have not stayed on property, so it's kind of weird to plan to NOT be there for the extra hours rather than staying late or going early. :p But I don't want any more crowds than necessary. Matthew's PTSD is up and roaring again. :sad2: I just wish I could figure out all of his triggers. It's so hard when they don't even know what is going on in their little brains. Regardless, this will be a magical experience, even if we spend the majority of the time at the resort due to episodes!:thumbsup2
I'm toying with the idea of leaving out the Universal days and perhaps getting an extra day at Disney - that way we can spend one full day at each of the parks leisurely, plus a day at Sea World. Rushing = BAD for Matthew. He has to have time to acclimate himself to his new surroundings. And even though he's been before, it's been a while for him and he was overwhelmed the first part of the trip. I only want happy days. :goodvibes Yes, I know they will be tired and overstimulated and frankly... whiny! I expect that. I just want to see their little faces light up with joy. To let them feel special for once, in a good way, not an ostracized way due to feeding tubes, immuno-suppression or because the doctor said no.
I think this will be good for our family. A chance to heal and finally feel "normal" for once.:)
 
Alrighty! I have made a decision! Please - hold the applause. :rolleyes: I have finally decided that we will go to Sea World our first full day. Since that Monday will be President's day and a lot of families will have a three day weekend, I just figured more would be hitting up Disney instead. And my little ones loved the Chattanooga Aquarium when we went this summer - imagine their little faces at Sea World! They were giddy touching sturgeons for crying out loud! Imagine dolphins!!:rotfl2:
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And a leisurely day spent at Sea World will be just what we need to "get our feet wet" for the trip. Hee hee, feet wet - I' crack myself up sometimes!:lmao:

Anywho! So that Monday will be all set to be back at the Village in time for the Halloween party. :) Halloween is a special milestone for our little family. It was the day that Matthew was diagnosed with congestive heart failure due to complications with hemo and his out of control blood pressure. He was listed "officially" on the wait list for a kidney and our donor was rushed through her process to make sure all was well with her so she could donate. I think back on that sick little boy that was wheezing and so puffy from fluid, even after 7 hours of hemodialysis... and I see him now. Wow - what a gift our donor gave us. More time to spend with our son. The ability to make memories (like this Disney trip) and so many more. We are truly blessed.

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Hi little guy! What a sweetie you have there. I'm happy to hear your success story.

DS is 7 and has bilateral renal dysplasia or multicystic dysplastic kidneys. He was diagnosed at 2 and a 1/2 and it took about 15 months before that of going to different doctors until they discovered both his kidneys never fully developed and are small with cysts. It's our job now just to keep him growing and the longer he can keep his own kidneys the better.
 
Hi little guy! What a sweetie you have there. I'm happy to hear your success story.

DS is 7 and has bilateral renal dysplasia or multicystic dysplastic kidneys. He was diagnosed at 2 and a 1/2 and it took about 15 months before that of going to different doctors until they discovered both his kidneys never fully developed and are small with cysts. It's our job now just to keep him growing and the longer he can keep his own kidneys the better.

Ick on the renal dysplasia! Matthew was diagnosed with that too. When they took out his kidneys during transplant, they likened them to two wads of rotten meat, the size of chewed up bubble gum. Nice little visual there huh?::yes:::sick: I do hope your son keeps his kidneys as long as possible! Your family will be in my prayers. :goodvibes
 
We had a wonderful Thanksgiving with both sets of grandparents over at our house for dinner. And we managed to get all of the outside lights up for Christmas before the cold front hits tonight. That way we can decorate the inside while it is chilly outside over the weekend. Hope everyone else had a wonderful Thanksgiving too:)
 
Glad you had a wonderful Thanksgiving, and yay for getting the lights up before it got cold. :) It got cold here too - we had been rather spoiled by warmer weather lately.
 
2 other kidney moms on here?! Awesome! Austin is on Cellcept (Myfortic since he swallows pills now) and Prograf. May I ask how much your little guy is on? I have been on here for a little while and have not had the pleasure of meeting other kidney families. That is great that you both had transplants!!!
 
Haven't seen you post for a while - hope all is well.

Thanks, we've been fine - just dealing with flu, fever and head colds galore! Tis the season to be sniffly. It's like Carol of the Coughs over here at bedtime!:headache: But those are minor and can't complain. 47 days!!!!!:dance3:
 
2 other kidney moms on here?! Awesome! Austin is on Cellcept (Myfortic since he swallows pills now) and Prograf. May I ask how much your little guy is on? I have been on here for a little while and have not had the pleasure of meeting other kidney families. That is great that you both had transplants!!!

Howdy kidney momma!:goodvibes
Matthew takes .75mls of cellcept twice daily (200mg/ml) and 1.8 ml of prograf twice daily (1mg/ml). Generally his Tac levels are around 5, they are trying to keep him between 4-6. We will be celebrating his 3 year kidney-versary on the 14th of this month!! YAY!!! Of course, he went to be tonight with a fever and sore throat. :( So doc in the morning, labs on Friday. His body is BAD with prograf - when he runs a fever or has a tummy bug of any type, his levels just sky rocket!:eek: He's been as high as 42 before! And boy did that do some damage to the new kidney. :worried:
How far out from transplant is Austin? I hope things are going well!:thumbsup2
 












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