A good day

Still no word about Friday’s bone marrow. We’re anxious to find out if Hayden is an RER - they’ve promised an answer tomorrow a.m.

Hayden’s had a couple of really good days. The dex is out of his system so his spirits are up and he’s now engaging in activities, like games, books, and conversation. And his mobility is greatly improved. He went from being unable to roll over in bed a few days ago to doing unassisted laps around the ward. It great to see him this way! The only pain left is tummy aches - they seem to be caused by constipation. However, now that he’s more mobile, everything moving through his system so hopefully we can clear that up too.

His hair started coming out two days ago - it’s falling in his face and all over the bed linens so he’s going to get a buzz cut - likely tomorrow.

We’re still very hopeful that H will be home for Christmas. If all goes well, he’ll be off the antibiotics (cloxicillin) by December 14 - which means no more IV pole! Assuming everything else is good, we’ll be homeward-bound. He completed his Christmas Wish List today and started his letter to Santa. He’s been a very good boy so I’m sure he’ll get a nice haul.

I promised in my last post to backtrack a bit to fill in some of the gaps, so I’ll start at the beginning with the most often-asked question: How was Hayden diagnosed with leukemia?

His most noticeable symptoms were lethargy, loss of appetite, and a mild fever. He also had a nosebleed. In his Thursday tae kwon do class, he was having trouble keeping up (not like him!). And there were other times where he would literally go flat out on the ground because he was so tired. His lunch came back from school untouched on Thursday and Friday, so we figured that a nasty flu was coming. He had a low-key weekend (that‘s when the low-grade fever started), then we called his paediatrician on Monday. Dr. Quan was out of commission (recently had surgery) so we took Hayden to the Dakota walk-in clinic, where Dr. Haggard did blood work. That surprised me because I expected that he would simply prescribe antibiotics and send us on our way. H stayed home from school on Monday and Tuesday, then on Wednesday a.m., the dr.’s office called an asked us to come in (not good). All three of us went….good thing because I can’t imagine either hearing it from my spouse or, worse yet, telling him. That moment was what I call the punch in the gut. All I really remember is Hayden saying, “Mommy, what’s leukemia?”. A crazy blur started after that….by 1:30 we were talking to Dr. Stoffman, a paediatric oncologist at the Children’s Hospital, and our worst fear was confirmed - the second punch in the gut. Hayden was admitted to the hospital that day. He was terrified that more needles would ensue (and they did) and we were doing our very best to hold it together. All three of our lives were irrevocably changed that day….and the lives of many others who love him. It’s been a short but tumultuous road since then, but we'll continue that journey in another post.