Eamon's Liver Transplant Journey (2026)

28/10/2024

5 years! Yesterday marks Eamon being blessed by his liver donor 5 years ago. His life wouldn’t be anything without the opportunity he was given. We can’t give enough thanks or gratitude. ❤️❤️

28/11/2022

After a week inpatient for IV steroids, Eamon is being released home from Phoenix Childrens Hospital!! WHOOT!! Now to continue the steroids and other medication at home by mouth and prevent any illnesses.

23/11/2022

Eamon’s liver biopsy showed liver rejection. He will now be inpatient for a minimum of 7 days. He has been started on high dose steroids along with some other support medications and am increase in his anti-rejection medication. Anyone who knows Eamon knows containing him in a hospital room/bed is not easy and has been challenging so far.

Keep the staff call light close and the duct tape closer 😂

21/11/2022

Eamon is not happy about his repeat lab results. We have been following his liver enzyme levels for the past both as they have slowly been rising. This mornings levels hit the threshold that raised enough concern to require a liver biopsy to rule of acute liver rejection. Eamon is being admitted today with plans for a liver biopsy tomorrow. If it shows rejection, he will be inpatient for a minimum of 7 days for high dose IV steroids to stop the rejection. Boo! I guess my kids are wanting a family Thanksgiving at Phoenix Children’s Hospital this year. 🤷🏻‍♀️🦃

18/11/2022

Eamon has been doing his labs more frequently since his three year
check up in October. The team has been watching his liver numbers closely as they have slowly been going up. Eamon will go back on Monday for labs once again on and we really
hope the liver numbers look better or he will be admitted for a liver biopsy. Keep Eamon in your thoughts please.

27/10/2022

THREE YEARS!!!!

Today marks THREE years that Eamon has been given a new start on his life through the generous and selfless gift of organ donation. Eamon and our family are celebrating his three year liver-versary today. We can't express the amount of gratitude for the donor and donor family. The memories and experiences Eamon has been given, along with the increased quality of life has been astonishing to say the least. Thank you!

Please think of becoming an organ donor if you aren't already.

29/10/2021

It has been TWO YEARS since Eamon received his gift of life with his new liver. Thankful doesn’t even begin to represent the word that covers how much life/opportunities/normalcy they have given Eamon. I can’t thank his donors family enough for their gift.

Eamon saw the transplant team today for his annual check in. He advocated for himself today, asking for his g-tube to be removed. He has worked hard and eaten well along with drinking enough fluids enough to prove he can be without his feeding tube finally. His excitement was palpable when he walked out and talked to me about how he didn’t have his tube anymore and he could share his tubbie pads with his brothers now (as one brother has a g-tube for other feeding issues, and another is awaiting a surgery date for a g-tube placement).

He has been so very lucky with no rejection issues for his new liver. We are tracked for his PTLD (post transplant lymphoproliferative disorder) concerns with oncology and receive ultrasounds every three months. Those have been beautiful and clean since surgery in February.

Overall all amazing news and positive things are happening this year for us!!!

04/08/2021

It’s been a hot minute since an update on Eamon has come in. He is doing great! You can see lots of scans done (checking status to make sure the PTLD isn’t present) along with usual transplant follow up appointments being completed. Throw in some at home fun with home made tattoos by mom and fireworks 💥 and BAM.

Eamon is still cleared from his genetics provider to eat anything he pleases. His MSUD is under control through the liver transplant. Let me tell you; he eat and eats, and eats! Eamon’s life has been drastically and positively changed because of the opportunities given to him.

A two year transplant update will come in October !!

05/02/2021

**I should lead with this bit of information: his liver looks great; no rejections issues **

For all asking about Eamon or those who have been keeping him in your thoughts/prayers. We are still inpatient. The team has given the fever plenty of time on antibiotics now. We finally broke the really high fever and are just low grade febrile off and on now. His tonsils which seem to be the source of the issue are still gigantic and have not shrunk or changes in size/look. The team had concerns that this could something bigger than just inflamed tonsils that need removal and ordered a specialized scan called a PET scan. We completed this scan. His tonsils, lymph nodes in his neck and an area in his intestines lit up showing for concern of the condition they were worried for. The doctors believe he has PTLD (post-transplant lymphoproliferative disorder). This requires us to take some tissue of the affected tissue out and find out what kind of this PTLD he has. All forms are a kind of lymphoma which is a cancer. Some are early stages and watched closely with his anti-rejection medication lowered at the same time. This means closer monitoring for his new liver. The other states of lymphoma based on the type can range from needing immunotherapy or chemotherapy.

Because Eamon’s tonsils are extremely enlarged and have been an ongoing issue and are already causing obstruction of his airway/obstructive sleep apnea along with having strep throat a number of times recently they will be removed. This was set for middle of March, but the team feels this needs to be done much sooner now with this diagnosis. We are now set for Thursday, February 11th to have the tonsils removed. They will send the tissue to the pathologist. This will give us the type of PTLD and other information the hematologist/oncologist needs to decide Eamon’s treatment plan moving forward.

In the meantime, we are still inpatient. Eamon has been on antibiotics since Sunday. He has mouth sores on both sides of his cheeks, under his tongue and on his tongue. We have tried to use lozenges, sprays and magic mouth wash to minimize the mouth pain. We even used oxycodone and morphine. He is not eating enough and has lost weight. We had to regard using his g-tube today for the first time in 8 months. Eamon was extremely tired, lethargic and exhausted over the last few days. He was sleeping overnight and halfway through the days. Anyone who knows Eamon is aware just how extremely unusual this behavior is for him. Today seemed to be a turning of the corner for his fatigue. He was awake at 8 am and lasted all day for the first time. He also for the first time got out of his bed and went for a walk since we got here. He has been so tired he has not left his bed or done any walks. Previous stays he is always running the halls and doing millions of walks a day, even after his transplant. So, he really was not feeling well.

That is the last 5 days in a nutshell. Not really sure what this next week will hold for us.

29/12/2020

What a rockstar my Eamon has become! No child should have to endure frequent needle sticks, multiple doctors visits, hospital stays, etc. Eamon does this with style and flair. He may not always have patience or be quiet, but we get out labs done and our needs met!

For anyone who knows Eamon, you know sitting still is not a possibility. Mix that with a lot of hospital stays as a young toddler and dextrose solutions and you have destroyed veins and a kiddo who has a central line for the last 4 years. Imagine trying to get blood from said kid! Well, his transplant teams goal is to get rid of his PORT (central line) which is where we do blood draws from, gave his transfusion through, etc. Being a nurse I understand the risks and their viewpoint of his increased risk of infection by having the line. But mama bear has a protective mode that is wanting this baby to have an “easy” way to get blood work done with little fuss as he goes through enough.

Today’s goal was a REGULAR lab draw with a view and not with his central line. The lab tech was amazing with Eamon. He was really patien with him. We did get the blood and with only one poke! There were tears and lots of clear sensory issues though. It broke my mama heart. When I access his port (central line) and we do labs from his central line it is 1000% better for him because the routine never varies (sterile technique). Also I always do his port accessing (poking) so I know it never varies and know his ques for sensory and stress. Each lab tech with regular lab draws wipe different, put the band on different tightnesses, smell different, move quicker/get too close. It’s just a lot.

So my mama goal is to work on him with more sensory changes that can appear at the lab for coming visits as there will be a lifetime more!

On a great note: his liver numbers came back and are BEAUTIFUL! No signs of rejection and all liver enzymes are within not all limits!! Oh yes, and at the little age of 6 he is a staggering 4’1” and 53 lbs! He’s going to be a linebacker! WHOOT WHOOT!

29/10/2020

Happy one year liver-versary 💚 (a day late)
Having this year of life, thanks to a donor we will never know, has given Eamon so much. He has experienced, loved and laughed. I could never express my gratitude with enough words or expressions of thanks to Eamon’s donor and family.
We have had a very blessed year with healing and growth. Here is to many more years of health and wellness with his new liver!!! Below I have shared just a few memories or times I have captured Eamon over the year since transplant just “living life”

23/08/2020

One thing I have seen a change in pre and post transplant is Eamons cognitive changes. He has faster processing times when asked questions. Less lag in thinking time when making decisions. He went from 1 word at 2 years old (bubbles) to being able to copy one word at a time being said at age 3 (all pre-transplant) now to post transplant knowing sight words for kindergarten at age 5! He is still lagging in multiple areas but I am not focusing on them unless for helping him with growth. I am just awe struck at his leaps and stretches he is making with having his brain functioning with healthy animo acid levels and how ineffective things were functioning before even though they were as “optimal” as we could get them without a transplant for his maple syrup urine disease (MSUD). This transplant has made his life a whole new world of amazingness!

Eamon's Liver Transplant Journey

28/10/2024

28/11/2022

23/11/2022

21/11/2022

18/11/2022

27/10/2022

29/10/2021

04/08/2021

05/02/2021

29/12/2020

29/10/2020

23/08/2020

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