A typically atypical week in the life of.......

We had to go to the children's cancer clinic three times this week. The first day was our normal clinic visit for scheduled chemo although this week we also had to get platelets and blood. Platelets for the bruising and blood for anaemia. My son, I think I will refer to him from now on as little cutie (LC), had an allergic reaction to the platelets, which is apparently "very" common, but it was his first reaction. It scared the crap out of me. LC was sleeping in my lap when I noticed his eyelids and around his eyes were swollen. Then he began coughing and waking up, my husband was out of the room at the moment and Holden was connected via his port to the pump stand, I was totally freaking out in my head. When my husband came back into the room he immediately got the nurse who immediately got the doctor. They gave him more benadryl and a steroid, which thankfully did the trick. Just in case someone happens to read this who isn't familiar with getting blood products, you always take a dose of tylenol and benadryl. Anyway, during this episode I started feeling hot and nauseous, I had to get up and go to the restroom where I dry heaved and put cold water soaked paper towels on my neck. I vagled, which means my blood pressure dropped quickly and I was on the verge of passing out. This is the third time this has happened to me since LC was diagnosed. I hate it, it makes me feel so week and like I am trying to make this about me. Oh well... The second day we went to the clinic for blood and chemo, LC actually went home with his port accessed. The third day we went in just to check his counts which weren't great, his platelets had gotten down to a low of 11,000, which is why he was bruising like crazy, and since he had an allergic reaction he only got half of the platelets he needed so his platelets were only around 30,000 by our end of the week visit. The visit itself was really nice, I took him alone which gave me needed confidence after the other incident. We saw the little girl who was diagnosed the same weekend as LC with the same thing, Tcell ALL. I got to talk to her mom a little which is really nice because our little cancer patients are getting exactly the same treatment and are almost the same schedule.

The one good thing about going to the clinic often is that LC is really getting used to all of the people. Another thing that probably is not apparent to those on the outside is 99% of the time we go to the clinic we must first stop by the lab and have blood drawn so we know LC's counts before we see the doctor. Well LC used to always cry whenever he went to the lab but the last two or three times we have gone to the lab he has laughed and talked to the phlebotomist! This makes us so so happy. LC was always a really outgoing little guy and finally he feels secure enough to be outgoing with all of this stuff happening to him. We noticed a marked change in his behaviour when his counts were too low for him to get his weekly chemo and he got a week off. He's like a different kid, like the kid he was before he was diagnosed. I love it. In a couple of weeks we will be starting the next phase of treatment, which is two months with 4 days inpatient treatment every other week. I can't wait for all of the hospital nurses to see Holden doing so well. And of course I have a couple of favorite nurses who I can't wait to see again. The floor of the hospital where we stay is only eight beds, it has a mini kitchen (fridge, sink and microwave), a family room (couches, table, TV, and computer), a play area (lots of toys, books, video games, and computer) a laundry room (washer, dryer, and detergent at no cost to us) and it is expected that one or both parents will be staying for the entire visit.

I feel I must complain a little so here it is.....
I have been working part time mostly from home with the understanding that I am not working on any tight deadlines. Well I get an email from someone, who didn't address me by name and didn't ask how things were going but just wanted to ask me when I was going to have such and such done. Of course, I know I should all ready have such and such done but this was a really hard week for me and I had all ready planned a meeting with the main person I am working with on the project for Monday of next week. I know people should expect something from me but I don't understand how you can not ask how things are going, after all I do have a very small child (not even 3 yrs old) who has a very aggressive form of leukemia and he is going thru weekly chemo treatments. Anyway, this super short impersonal email made me feel all sorts of inadequate and a little angry.