Today was Noah’s bell ringing, and it was a wonderful time with wonderful people.
First, a bit of administrative information. Noah got his weekly dressing this morning at the clinic and had labs drawn. The counts are still not where we’d like to see them after another week, but have moved up a bit. Platelets, which were already in a fairly normal range, went from 224 to 271. Hemoglobin went from 8.9 to 9.9, but is still not at the bottom of a normal range. ANC has been the slowest to recover, though it went from 270 to 432. We were hoping to see around 800, but we’ll see where it’s at next week.
Anyway, on to the more exciting stuff. The videos and pictures tell most of the story, but it was a very moving experience being around so many who care so deeply for Noah. The Child Life team at the hospital is top-notch and made it a very special Harry Potter-themed experience. There are a lot of nurses in pediatrics who geek out on Harry Potter, and they were pretty excited that Noah chose that as a theme. You’ll probably notice a lot of round-rimmed glasses and even some forehead lightning bolts if you look closely.
This was a celebration of Noah’s strength, the care team’s brilliance and compassion, and all of you reading at home who have provided us so much love and support. We can’t thank each and every one of you enough. We love you all — over and out.
Here is that poem or whatever from the video for posterity:
It Grows. It Spreads.
Here we are. It’s the day.
Thinking back: yesterday and a lifetime ago.
A rush to the hospital. The labs. The news.
Transfusions. More transfusions. So many needles.
The shock. The worry. The tears. The numb.
Fear grows. Cancer spreads.The helplessness of watching your child lying there.
We could hug, but not heal.
We needed help. Help was here. Help was swift.
Expertise and experience stepped in.
In a place of competence. A place of compassion.
Knowledge grows. Hope spreads.A plan was made. The work began.
Day by day. IV by IV. Transfusion by transfusion. Fever by fever.
Counts to zero, and wait. And wait. And wait.
160-plus days in a room he could not leave.
And this kid — stronger than we ever knew. He gave us strength. He lifted us.
And Mom. Taken for granted, again and again, but always there. Doing the little things and the big things to keep us afloat.
And his brother. Don’t forget him. When we were grasping for normalcy, he was the one to make us laugh. To snap us out of it.
Strength grows. Courage spreads.But not just the four of us.
Grandparents and siblings, cousins, aunts and uncles. Friends and neighbors. School and classmates and community.
And here. This place was the center. We stayed for days and days, nights and nights.
And you were always here.
Nurses and doctors. Teachers. Child Life. Art and music therapy. OT and PT. ID and Pall and spiritual care, EVS. And more.
We laughed. We cried. We bonded.
What was a family of four became more. It was you, and you, and you. It became we.
A family grows. Love spreads.And today, the bell rings.
Remission. A kid back home. Brothers reunited. Breaking bread — and toys.
The journey isn’t over. We can’t know what’s ahead.
But we’re strong now. We’ll meet whatever comes.
And this milestone is real — we’re here to cherish it. To celebrate it. With all of you.
Joy grows. Smiles spread.How do you thank someone for being there in the hardest of times? For going above and beyond? For — oh, ya know — saving your kid’s life?
Words don’t suffice. So we double down and ask one more thing.
On some future day that’s tougher than most, when you feel like you just can’t — remember the difference you made with this child.
Carry on. For our kid. For the next kid.
Gratitude grows. Love endures.
