Haley’s Giggle

It’s almost a year since we last posted and so much has happened that more posts will be coming soon. But wow what a year and wow what a girl! she’s been through every test and testing imaginable. She has started occupational therapy, with a therapist just as good as Jaye her fantastic PT. She also now wears orthotics, which Jaye already has noted has made her legs grow a bit straighter (they at the moment cave in a bit at the knee). Her bloodwork is great– her iron is back to normal, as is her vitamin D. we go back for a second round of tests in May. She’s finally able immune-wise to start her vaccination regimen. She’s also expanded her diet to include chicken nuggets. we’re slowly adding yogurt (though she’s slightly allergic to milk, her allergy to it is getting more miniscule by the minute). She still loves purple, but also pink and now yellow. She loves to play Just Dance and loves Winnie the Pooh and the Swedish Chef. She’s the luckiest girl to have a sister like Anna who treats her like any normal kid, doesn’t have her kid gloves on unless Haley is really upset.

We are very lucky and we show our gratitude every day, today in particulary, to Hiltrud her donor and all the doctors, nurses, technicians, therapists, family and friends who has gotten Haley to where she is now.

This past round of check-ups at Sloan Kettering were quite positive: 1% in height, and 2% in weight. Haley’s just on the growth chart, but it still counts, which means no need to contemplate a feeding tube again.  Her bloodwork is stellarly normal, with a bit but only a bit more help with her Vitamin D levels (her levels have always low– the Tacrolimus she was on to prevent her bone marrow from being rejected gave her a higher risk of skin cancer, so we kept her out of the sun most of these past few years).  Her EEG was also particularly strong.  Haley still has many issues since her bone marrow transplant– allergies, constant diarrhea, and inturning of her toes and feet making it hard to walk, jump, run and balance.  And her latest symptom– burning sensation in her fingertips– has made us realize that though she is cured, she’s still a ways to go.  Her path out of old conditions is still unclear, and the new latent complications from the chemo regimen she was on — a phenomenon called “late effects”– make that path even more uncertain. We’re working hard to tackle these things as they come, amassing an impressive entourage of specialists including a neurologist, dermatologist, and endocrinologist.  As the parent, you feel like you’ve been on a marathon, and when you reach 26.2 miles, you then only find out that the end isn’t there, but rather 100 miles further down. It’s a daunting because there’s less familiarity with the complications– every kid responds differently to the chemo and other drugs and it’s impossible even if two kids had the same exact regimen, how they will do.

We’d like to all resume our daily normal lives, but we’re realizing finally that such is not the plan for us, not yet anyway.

Today was the 4th anniversary of Haley’s bone marrow transplant. It’s amazing to look at her and think not only that this happened four years ago, but how far she’s come.  She’s writing and typing out words on the computer; she’s learning to swim; she’s twirling albeit on toes she cannot feel.  She has the will of the world, but we already knew that.

To honor the now known donor, Hiltrud, and her generosity to Haley and to our entirely family, we celebrated the “Day of Giving” for the 4th year in a row. The first year was to support Uncle Pretty in his inaugural head-shaving event to raise money for cancer-stricken kids. The second year was donating things to animal shelters, the salvation army, and other charities. Last year, Haley’s class (along with Anna) made a mural for the Hem/Onc clinic at DC Childrens. This year, we focussed on the doctors, nurses, therapists, and babysitters that helped over the years. On the theme of painting, which both Haley and Anna are into these days, we bought 20- 8×8 canvases, and taped them together to make one giant singular canvas. Anna and Haley then took opposite sides, and made a painting, entitled, “Night of Hope.” We took a picture of it,

then divided up the painting, to give all of the doctors, nurses, therapists, and caregivers that have helped Anna and Haley along these challenging but triumphant years.  We hope if you’re reading this, you do something for someone else and keep this “Day of Giving” in mind and do in honor of Haley’s donor, Hiltrud (who also got a canvas).

So many people called and emailed and texted. Thank you all so much- we have the best family and friends in the world.