Wednesday, September 22, 2010

September 15th Wednesday: Discharged (to RMcD House for now)

I don’t feel like this past round went particularly smooth, we had a couple of bumps that could have been avoided. Charlottes stem cells have been given to her around 2:00 the past two times, so when the nurse came in with her pre-meds at 9:00 am we were surprised at how early we were getting started. (Usually we give her Benadryl and steroids at about 1:00 to help her through the transfusion.) When Rob asked our nurse she told us sometimes they do them at 10:00 and that Charlotte was in the computer for the drugs now. A comment that our nurse had made the night before then made sense, she said to get a good sleep because it would be a busy morning- at the time we thought that we would not really have a busy morning but maybe she just meant our usual busyness. Ok dokey, it added up so we gave her the pre-meds. About an hour later our nurse came in looking sheepish and said that her stem cells were not arriving until 2:00-it was in the computer wrong and no one had noticed. So Charlotte had her usual 4 hour Benadryl nap... while the doctors came in and debated about what to do. Both the Benadryl and the Steroid had a 4 to 6 hour effect; Charlotte actually would need them at hour 5. So we debated if she would be protected enough, what about the side effects if her dose was repeated early? In the end we only gave her the Benadryl again... so she slept most of the day... and not much during the night.

It was Robs turn to sleep at the hospital that night, we had worked that out in the beginning since the smell of the stem cells makes me nauseous and that would be the worst smelling night. We knew that daddy was in for rough night... but we had no idea. She actually slept not too badly until about 1am when Rob woke up to her making a funny sound. Luckily he got up checked on her. She was soaked in blood, her blanket and crib pad were all soaked. One of her lines had somehow come undone. I came in the morning to find a very pale Charlotte sitting with her very shaky, nauseous Daddy. She had lost a lot of blood; Rob had to wring it out of her clothes. Our big concern was if she would have lost the stem cells that had been transfused earlier. So our nurses were consulting the doctors who where consulting the stem cell team.... we had a lot of people in to take a look at her reassure us that her cells should have all been absorbed by that point. We all felt a little shaky that whole day but by bed time Charlotte had a couple of meals in and was looking much better.

I’m not sure if I have mentioned this before but her stem cells are needed for her body to recover itself from the chemo drugs. No one has actually told us what would happen in Charlotte’s case if she were not to get her stem cells back, but we have the impression that it would take many months for her to recover herself... and some kids would not recover. Hence our stress over Charlotte loosing so much blood that night! By the end of the week her blood counts were back up to where they were expected to be so she was back on track.

Potentially our last hospital stay... Walking down the corridor on our way out after Charlottes discharge made me confront some mixed up thoughts and emotions. Excitement. Relief. That could possibly be the last time we sleep there! Nervousness. Anticipation. But really the worst of this round is yet to come; her dragony days are still ahead of us. Anxiety. Charlotte could still very easily get sick or have a fever, granting us another stay. Fear. This is also the last round so it will likely hit her the hardest, although she has come through the rounds relatively unscathed... trying not to get our hopes up! Hope. How can I not let my hopes “get up?” Confusion. Can I let myself look forward to something even though it might not be there when we expect it? Is that just asking for disappointment? Only time will tell if her cancer was cured, but maybe-hopefully this protocol is all we will ever need to go through. Guilt. So many new friends that we were leaving behind us, all still in the midst of cancer and chemo drugs, it’s just not fair. Nothing about that is fair. Pride. My little girl has shown such strength though everything that we have put her through. Appreciation. Our friends and families have held us up, shown so much love and blessed us in so many ways.

Charlotte helping out with checking her blood pressure.

Some of our favourite nurses, we were so happy that they all ended up working on our last day.

One of Charlottes new friends, we will get to play with her at RMcD house too.

A quick nap before we head over to RMcD House.

All we can really count on is the stuff that’s already behind us I guess. She has finished this last set of drugs. And that is exciting. But what will the near future hold? I guess we are still forced to take this journey one day at a time.

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