Wednesday, 27 August 2014

What's the diff?

When you've been through as much as Dominic in the past year there's not a lot that will phase you.

Diaper changes in the middle of the night? Yawn.

Changing the sticker that keeps your NG tube in place? Crying about that was so last week.

Another potentially deadly infection because any infection is deadly when you've got low blood counts? Pass me a tissue.

We came back to Calgary this week as a semi-planned vacation, but he's wound up back in the Alberta Children's Hospital. He dealt with a runny nose the previous week and spiked a fever Monday morning, which combined meant instant isolation on Unit 1 and all sorts of tests.

After the platelet conundrum in Medicine Hat last week we were just glad to be here. This is where things are most comfortable because we know the routine, the people and they know us. If anything is wrong we know it'll be dealt with quickly and properly.

It took a day to get the first answer to what's troubling him now (other than leukemia). After a ridiculously gross diaper prompted a nurse to send in a sample, the test came back positive for something called C. difficile - a bug that causes problems in your gut. It's a surprise he hadn't had it before because it typically occurs as a side effect of having too many antibiotics in your system, basically screwing up the delicate balance of organisms in your intestines.

All you really need to know is wow, is that stinky.

It's more dangerous for Dom because his white blood cell count is just about zero. Even more drugs are the answer in this case, but he doesn't mind. He takes his meds like a champ, happily removing his soother and opening his mouth for the oral ones and putting his hands behind his head and crossing his legs when a nurse needs to access his broviac line and give him others intravenously.

He may need more platelets and red blood this week, but he's never (knock on wood) had bad reactions to blood products. If all goes well he could be out of the hospital around the time we had planned to be back in Medicine Hat anyhow. We'd like to have another week there before his second round of chemotherapy and the DLI (T-cell infusion intended to create GVHD). I'd like to avoid taking a bus back home; we drove as a family from Medicine Hat for the first time since his diagnosis last September which means no second car for me if he and Trish need to stay in Calgary.

Among the many reasons to be in Calgary this week was to see family. During a visit with relatives from Ontario, who took time out of their planned vacation to Kelowna so they could see Dominic, we were eating Chinese food. After trying some noodles - a sign his appetite isn't gone for good - he reached for a fortune cookie.

"Your energy returns and you get things done," read the note inside. "3, 13, 14, 19, 36, 40."

He downed the cookie and then another. He seems intent on making that fortune a reality.

1 comment:

  1. C. Diff - ugh; not fun for anybody. I cannot read your blog or see your son's picture without being amazed by your family's resiliency and appreciate what it means to embrace today and enjoy every moment. Since reading your blog I have done a fair amount of reading about children's leukemia. Your doctors in Calgary seem amazing and the tract that you are on suggests ingenuity and a willingness to think outside the box; I am sure that they have not left any stone unturned in considering his treatment options. However, I feel compelled to ask if they tested him for presence of the 1DI0 antigen. This cell marker seems more prevalent in lymphocytic cases than in myeloid cases but there was a study out of Ohio State that included acute myeloid leukemia patients as well. Unfortunately there were no children Dominic's age in the study, there was no mention of his rare translocation and the study results weren't published on line. However, I feel compelled to throw it out there since if he does express this antigen he is a candidate for apolizumab treatment. Let his T cell transfusion encourage the graft to fight the host for supremacy and complement that with apolizumab pick off the cancer cells to help the cause. Based on his reaction to the monoclonal antibodies for Epstein Barr you might not be keen on revisiting that type of infusion but, in theory, monoclonals have promised to be the wave of the future for cancer therapy for decades. I'm amazed we haven't made more progress with them than we have. Anyway, I do expect this has been addressed by your medical team but it seemed like it was worth a mention considering his relapse. Hope the diapers clear up soon and his little body continues to demonstrate such remarkable strength. Cherish every trip down the slide and all the cookies he can eat. Peace and be well.

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