Hello from Heeth’s Mom,
We hope everyone is doing well and getting ready for some summer fun and adventures. As the school year is winding down; it’s a bit ironic because Heeth has taken some happy first school steps in these last few weeks. Some nice new friends Heeth has met at school this year were happy to be by Heeth’s side as he ate lunch at school for the first time in 5th grade: in a smaller environment, with the windows open. One of the boys even told Heeth it was the “best lunch all year” having a quieter spot with friends. I’m not sure these boys even realized how much this meant to Heeth and his recovery. This made Heeth’s heart so happy! Heeth’s soccer team is having a big tournament this week, which has also stirred up excitement! With this nice weather, Heeth went to his first Portland Sea Dogs game and saw his cousin’s unicycle performance. A few weeks later, Dana-Farber gave Heeth Red Sox tickets: so he has been living large!
During our May clinic visit, some labs came back continuing to show Heeth’s liver wasn’t happy and his iron levels were extremely high. Throughout Heeth’s recovery some of his organs had been “angry” along the way but have since normalized. His team decided it was a good time to look into this further. Heeth and I headed into Boston for an MRI on his heart and liver. The findings showed that Heeth’s heart was doing well (thank goodness,) but his liver had way too much iron in it, also known as “iron overload.” This is unfortunately due to the amount of blood transfusions Heeth had for just over a year. The doctors told me that sometimes when a patient has an extreme amount of transfusions, the body is not able to use the iron up. His team wanted us to know that although this is not what I wanted to hear, that they feel confident they can treat it and keep our buddy healthy and happy. The first way to treat this is therapeutic phlebotomy. In other words, Heeth will be donating blood. Heeth’s first question was, Can they use my blood to help other patients? Unfortunately due to his blood having unsafe levels of iron, they cannot use it. We have learned that Heeth will be heading to Boston every 4-6 weeks, in addition to his Dana-Farber visits, for therapeutic phlebotomy for possibly 1 year (they said sometimes it can take longer.)
We had our first appointment on Friday and decided to spend the day together beforehand: late morning breakfast sandwiches out in town, library visit to stock up on books, and a treat of Prime drink to help make sure he is super hydrated beforehand. When Heeth and I got into the car in our driveway, Jasper was just heading out for a walk. Jasper overheard Heeth ask about his treatment in Boston. Jasper heard “Boston treatment” and jumped into the car, on Heeth’s lap, and looked at him with eyes saying “no way, no more treatment.” Heeth had to reassure Jasper that this was not going to be an over 6 month hospital stay and that he would see Jasper that night!
When we arrived at the hospital, Heeth and I thought it was funny that we couldn’t find the apheresis department, since we had been to almost every part of BCH many times together. We were greeted by a kind nurse, who now unmasked, re-introduced herself to me: She was the nurse who collected Heeth’s sister stem cells over a year ago! She was so excited to see Heeth and know that the procedure she did with Keene had brought a happy path! Heeth was such a champion during the collection, rehydrating throughout, brave for the IV, and even ordering his favorite slice of Boston pizza! We were told to keep him calm and resting this weekend; but today he woke up with most of his energy back. So we decided why not take advantage and go to the beach!
Last summer, we had hoped to travel to Chicago to honor my dad and see so many family members and friends that had been sending love from afar to us for so long. After much thought, we knew it wasn’t in the cards for us with where Heeth was at in his recovery. Next week, however, we are planning to begin that postponed journey and finally head to the Midwest! We can’t wait to see everyone and hope to have a full dance card with family and friends.
We hope we can see many of you over the summer months. Thank you for your continued support and positive thoughts for our family.
HUGE HUGS FROM HEETH!
With Love,
Heeth’s Mom
Red Sox and Sea Dogs!
Letting Jasper know he will be back soon!
Not going to let some more treatment get him down! Handled it like a champ!