July 20th Tuesday: The dragon rears its head

Tuesday night was my turn to stay at the hospital, Charlotte went to bed well and it seemed like it was going to be a fairly good night. HA. At midnight she woke up with her blood pressure check. That got her a bit upset. The first one conked out so we had to try taking it a second time. That got her a really upset. Then since she is on full hydration her diaper needed changed too... that got her really mad. Then she blew a full out tantrum, thrashing and bashing and screaming at the top of her lungs. Nothing I or any of the nurses could do would settle her down. She started throwing herself around in her crib, she bashed her head on the rails a few times and it did not even faze her. I was so worried that she would hurt herself! Then she started yanking on the IV lines, the whole pole was swaying and rattling away. Her syringe line came unhooked at the pole and was flipping around in the air. I was scared she would pull the line from her chest. So I took her back out of the crib and just clamped her to my chest as tightly as I could (but really how do you hold onto someone writhing and wrenching like that!?) Poor little girl, she was so mad that she started pulling her hair out and clawing her face... that wasn’t getting her anywhere so she turned on me. Yanking fistfuls of hair, she clawed away at my face and then discovered something that did make me flinch... she chomped down on my shoulder so hard her little head shook! I really pitied all the other kids in our wing that night for the screaming and yelling that came out of our room. I held on until my arms could not take any more and put her back in the crib while I finally phoned over and woke up Rob asking him to come and try to settle her. She was thrashing around again so I picked her up and clenched tight while she continued biting and scratching. Rob arrived to find us both standing in the middle of the room crying. Thankfully Charlotte had lost some steam by then and surrendered easily into her daddies arms and was quickly sound asleep. By 2am we were wondering what to do, what if she woke up like that again??... so we both stayed and slept at the hospital... needless to say all three of us were pretty short on sleep by the morning of her birthday. In the morning we assessed the damages. Charlotte had a huge scratch across her cheek with dried blood, her hair at the front was thinner, her eye was all scratched around and puffy. I had a blood blister on my upper arm from one bite, at least 4 good bruises on each arm-only one broke the skin though-I was so glad that I had been wearing a tee shirt and a sweatshirt! My glasses had a new scratch from when they hit the floor. All three of us looked like we had a pretty rough night. So where did that come from!?! I don’t know but we sure don’t want to see it again! She had been on a small dose of steroids as a preventative to help protect her lungs from one of the chemo drugs... maybe it was that. Maybe my poor little Charlotte just had enough. Thankfully that evil has not reared its head again... except for the biting. She only tries to bite mommy when she’s mad though, never daddy-I’m not sure what to think about that. I know that daddy is the favourite but this is a little extreme. I’m trying not to take it personally- it’s just the chemo talking I tell myself.

July 18th Sunday- Stem Cell Day

On Sunday 18th she was given her first re-infusion of stem cells. That was a very anticlimatical event; there were seven different nurses and technicians in our room, they did full vital signs on her every 3 minutes... the infusion lasted a whopping 6 minutes and she slept through it! Blip-we’re done. WHAT!?! It took two days and over 12 hours to harvest these cells and that’s what it comes to!?! She will get two more infusions, but really after all we went through to get these things!

Then came the smell...oh the smell, it affects different people differently, some don’t even smell it, some can’t walk into the room without turning green... everyone has their own description of it... Some say it smells like bad fish, to our doctor cooked asparagus; to me it smelled like creamed corn. I could smell it right away on her breath, the anticoagulant that they use to help preserve the stem cells while they are frozen. A few hours later and I was one of the lucky ones turning green... please don’t ever ask me to eat creamed corn again. Luckily for me it was Robs turn to spend the night that night and by the next night it was not so potent smelling. The next couple of days were spent hanging out in the hospital, Charlotte was hooked up for hydration most of the time but we did get off of isolation so we were able to take some wagon rides around the nurses’ station again.

July 13th to 17th- Starting new chemo rounds

So back where we left off... Tuesday 13th Charlotte had her LP, it came back clear- which nobody actually told us til way later but since we started the chemo right away we figured it must have been clear. Wednesday 14th we were admitted at 8:00pm, this time they were expecting us. She was hooked up for pre-hydration for the night. Chemo started Thursday 15th Dun Da Da Dun... New set of drugs to start, this is the phase called “Consolidation,” we were warned that these drugs will knock her down even harder than the stuff we have been through.

She actually was only given drugs for two days this time but the doses she got didn’t come without a price! One of her drugs, Thiotepa, is excreted through the skin, if left on her skin it would burn... That means that we had to wash her down every 6 hours, this was not fun! Even during the night. Have you ever had to wake a two year old up at 2:30 to give them a bath and then get them back to sleep? Not just a bath either but a full dressing change, we had to remove stickers and clamps to wash underneath then reapply them, only to have to rip them off 6 hours later! Never will I wince taking off a simple Band-Aid again... poor little sweetheart, her skin was so red and raw.

The kids usually get a tan from that drug too, and then we were told that their skin typically peels off like after a sunburn. AAAAHHh. Luckily Charlotte skin did not tan or peel too much, we must have done a fairly good job with the baths. The nurses all wore full gowns and gloves to come in to see us and we were put on isolation the whole time too so nobody accidentally touched her skin, as it was carcinogenic to others. By the end of each day Rob and I felt like we had itchy insulation on any skin that was exposed to her, extra scrubbing in the shower for us too. Initially we were told that we would have to bath her for 24 hours after the last dose that means we had to wash her for four days... when the doctor told that it was actually only while she was being administered the drug it was like an early Christmas present! Yahoo only washing her for two days! That was long enough. But she did pretty well; we found a treasure trove of warm blankets in the unit and took advantage of them during the nights.

The other “big” drug she is getting has more of the same side effects as the drugs during the first rounds... nausea and vomiting, loss of hearing, loss of electrolytes, decreased kidney function, decreased liver function, loss of hair... although her hair has been pretty stubborn at staying in, I guess red hair is more tenacious than other colours. She was fairly nauseous but regular doses of gravol and ondans kept it in check. Actually she did pretty darn well during the whole thing, to compare day to day with her first rounds she was eating better and happier (so far.)

Then on Saturday we had a “day of rest,” that’s what they wrote on our schedule, it was not exactly restful but we were not given any drugs. So far everything has been fairly smooth for this round, lets hope it continues that way.

Here is what her beaded journey looks like, the Kids Cancer Care have a program for the oncology kids to track their journey. We were given a journal book with a key for each colour of bead. A black bead is for a poke (IV, Inseflon insertion,) a red bead is for a blood or platelets transfusion, light wood coloured ones are for chemo drug days, Green are for her dressing changes, the little gold disks for her G-CSF shots (the really expensive ones-hence they are gold!) We also added a few of our own to the journey, I bought some little purple flowers to show when Yolanda gets to visit and some little hearts for when we got to go home for a few days. I think it will be a pretty neat learing tool to talk about with her in the future.