Fall Update: Jimmy Fund Walk Too! – COTA for Heeths Hope

Hello From Heeth’s Mom,

It has been a while since our last post, but I hope this one finds everyone doing well with back to school excitement! This summer seemed to fly by but our family was able to fill it with family and good friends: which is all we could ask for!

Heeth continues to visit Boston Children’s Hospital every 5 weeks for his apheresis and continues to amaze me with his championship attitude! It was interesting: Heeth had his regular Dana Farber Clinic appointment this week, and he received scheduled vaccines. With transplant, the day of transplant is called Day 0, similar to “the day you are born.” As you count up, your immune system is similar to that of a newborn and you have to go through the same rounds of vaccines again. Heeth is at his 18 month mark post his final transplant. At Heeth’s Jimmy Fund appointment he was scheduled to receive 4 vaccines (yikes!) Over the past 3 years, Heeth has had more shots, procedures, medications, etc. than most folks have in a lifetime. He was always fairly calm and unphased by much of it. At this appointment, when Heeth heard 4 vaccines, he was not excited, requested not to get them, and asked for time between the shots. In other words, Heeth was acting like a NORMAL KID!! Our clinic visits have spread out to every 3 months, so Heeth even went to the wrong elevator on the way down: because it had been so long since we had been there! His team all came to find him while we were there because everyone was so happy to see him doing well: hugs and high fives were all around!

Speaking of Jimmy Fund…September is Childhood Cancer Awareness Month. Although Heeth did not have cancer, aplastic anemia has some similar treatment plans, falls within the same critical/life threatening illness group, and causes similar fears/traumas to the patients. Our family will be walking in the Jimmy Fund Walk on October 1st. We know first hand how helpful these funds raised positively impact patients and their families. Many of our wonderful family members and friends have already helped us raise these critical funds: but for anyone interested, please consider joining this cause and donating to our team at http://danafarber.jimmyfund.org/site/TR?px=1115807&pg=personal&fr_id=2000

No child should have to fight against a critical illness and loose years spent in treatment and/or isolation. Let’s help all kids get back to being a kid! Try not to take for granted the small everyday things that make a child’s life special. When Keene and I were driving home together this Wednesday, she turned to me and said “Mom, I can’t believe Heeth AND I are both going to be in school tomorrow for the full day. It has just been such a long time.” When I dropped both kids off on their first day this week, tears just streamed down my face as I drove to work: nothing shy of a miracle to see my kids walking into middle school together.

Have a happy fall and we hope to see many of you this year.

HUGE HUGS FROM HEETH!

With Love,

Heeth’s Mom

Some Summer Fun Photos:)