Hello From Heeth’s Mom:

This is a long overdue post and I apologize for the delay: I am back working full time, balancing a new position, trying to organize after school activities/fun for the kids, Heeth’s medical monitoring and care, and trying to sneak in a quick bike ride and quiet coffee break each day!  Heeth continues to work to get stronger and is closely followed by his amazing team at Dana Farber.  I hope everyone has been enjoying the fall and all the wonderful fall magic that surrounds us: especially in New England.  The weather has been absolutely beautiful and I can feel my dad helping so much from up above to make sure we enjoy every minute of the fresh air and gorgeous colors.  This definitely has been the most breathtaking fall that I can remember.

This past month has sure been a month of “firsts” for Heeth.  Let’s start with the one that most folks have reached out to check in about: Heeth’s first day of school!!!!!  Heeth happily met his teachers outside and joined his 5th grade class, shooing me aside and instructing me to “please stay in the car and not embarrass him.”   His teacher looked at me and said “Molly, we got this.”  I, of course, waited in my car the full hour with tears of joy, disbelief, and happiness.  While in my car I felt the need to celebrate so I quickly reached out to our family and to Heeth’s lead doctors to let them know that he had in fact gone back to school!:)  The whole group responded with cheers and happy comments, knowing the magnitude of this first step.  Heeth had a great day and has enjoyed every moment of school since then.

Heeth and some close friends did his first Jimmy Fund Walk to raise money for all the resources and research available to patients of this life saving center.  It felt amazing to walk through our local woods for such an important cause and a huge thank you to all our family and friends that donated to our team.

And the moment that literally took my breath away this month and caused tears to flow uncontrollably down my face…(thank goodness for those sunglasses…)

Last year at this time, Heeth was getting discharged from the ICU back to 6W, and was getting ready to begin more conditioning for a second transplant.  He was extremely sick and his team was very clear how important it was for me to get him out of bed and into a chair every day (this was a huge task..) His mental and physical health were being challenging on a daily basis: learning he would not be able to be at home for Christmas, going back to the ICU for over a month and ultimately having to receive a 3rd transplant…I remember Heeth looking at me one day and saying “Mommy, when am I going to get good news?  Everything keeps failing, why did this happen to me..”  It was a daily struggle to keep from breaking down completely and to keep positive.  As he began readying his body for a third transplant, his nurses would wheel him down to the varying specialists who check organs pre-transplant.  I would speak to him before we went to each appointment.  I would set a goal with him, to walk 10 feet, 15 feet, or from one sign in the hallway to the next and explain how we have to keep some movement so his lungs keep working and he is strong enough to undergo this next transplant.  When I would ask the nurse to stop the wheelchair and say “Okay buddy, let’s get up and let’s walk” it was often a struggle.  But, Heeth would do it.  He did it because he knew he had to push through to get to the other side.  When he would get wheeled back to his floor, he would ask us to park his chair, so he could walk the rest of the way to his room (impressing all his nurses.)  

So that leads me to last weekend: Heeth played soccer against the hardest team in the league.  He kept telling me all he really wants to do is score 1 goal, just 1 this season.  Heeth is still a bit slower and often runs a bit behind the pack.  Last weekend, Heeth was nervous and a bit dreading playing this challenging team.  At about half way through the game, Heeth kicked his notorious “boot” and it flew over the team and above the goalie’s hands into the goal!!!!  I screamed at the top of my lungs “YAH HEETHIE!!  YOU STILL GOT IT BUDDY!!!!!!”  His team cheered and I couldn’t stop crying and laughing at the same time.  Knowing I had probably embarrassed him to no end, I sat back down and halftime quickly came.  All of the sudden, I saw a boy come running around the sideline, towards the fans across the field, and realized it was Heeth.  I got up, to meet him and make sure he was okay.  When I got to him I said are you okay buddy?   He immediately bear hugged me.  He looked up and said “Mommy, did you see that, I made a goal!”  

Another mother of one of Heeth’s friends wrote this:

Nothing is more exciting than watching Saturday soccer in our beautiful city.

 Today, we were opposing Triton who stood undefeated. The air was buzzing.

 We were off. Back and forth, clearly this game was going to be a fight. We scored..off to a good start. 1-0. 

 Then, we scored again. A beautiful long range kick to the top right corner. Opposing goalie didn’t have a chance.

 Following this goal, the Newburyport Knights erupted in an instant, intense cheer and the team ran into a group hug. You could see, feel and taste the joy across the entire field.

 We won the game 2-1. Great victory.

 However, what happened today was larger than winning a game and rather perfectly defined being a team, overcoming adversity and HOPE.

Beautiful goal Heeth.

I do not take for granted any of these moments.  I know how huge they are for Heeth and our family.  When I close my eyes, I can still vividly see the crisis situation we were continuously in for the past couple of years.  It will take a long time for us to continue to move forward and get stronger from all that has transpired.  We still have moments of extreme fear, symptoms to overcome, but I am very hopeful we will get stronger each day and month.  I am forever grateful for our family, friends, and medical team that have been there for us throughout this whole journey, and continue to be.  I am thankful for my dad who has given me strength to keep going and support “his boy” and do everything in my power to help get him better.  I see so much of my dad in Heeth: his strength, a fighter, not sweating the small stuff, and joyfully walking, with a bounce in his step, as my dad always had, to meet his teacher for his hour of school.

Our family is working to organize a way to give back to Boston Children’s this season to help other families that are there during the holiday times.  We hope to be able to provide some light and hope to other pediatric patients and their families as so many people did for us.  If you are interested in being a part of this, please let us know and we will certainly include you in the details as they develop.

One way that you can help, especially during the holiday season, is to donate platelets and blood.  Every year our hospitals have a shortage during the holidays when folks are busy with family and friends.  Patients still require these transfusions to stay alive.  Heeth required daily platelets transfusions for a long time.  During a time when many folks were not sure how to help us, a huge group of loving friends and family made regular appointments to donate platelets.  This was incredible. Please consider donating here to help patients especially over the holidays:

Schedule a Blood, Platelet or Plasma Donation | American Red Cross (redcrossblood.org)

During this thanksgiving season, I cannot express how thankful I am every day I get to spend with my kids and see them smile.  Make sure you give your kids a hug today too:)

HUGE HUGS FROM HEETH!

With Love,

Heeth’s Mom

First Day of School!

Jimmy Fund Walk!

Daily Practice to get stronger

My favorite victory hug:)

So Thankful:)