That is the simplest way to put this whole transplant experience. Ryleigh has had a rough few days…but as each day has progressed she seems to be less affected by the medicine in this first cycle.
This is the third day of the first cycle of medicine – she is receiving intravenously a medication called Athymocyte globulin (ATG) is an infusion rabbit-derived antibodies against human T cells. It is technically not a chemotherapy drug but one that is used to help suppress the immune system and the cells that may cause rejection of the new cells being transplanted. She reacted to it really badly on Friday. She spiked a really bad fever, chills, shakes, and a rash. They gave her more meds to help but she was really miserable. The next day she said it was like having a really, really bad flu.
Yesterday she slept mostly during the day as she was being infused the second time. This time they increased the time she was to be infused to hopefully minimize the side effects. It may have worked a little bit as she had a slight fever and hives and she said it felt more like she had a really bad cold. However, her long sleep during the day caused her to stay up until 5:30 in the morning! I tried to catnap through a few hours but our room is very small and she still needed help getting to the bathroom and such. We both got some sleep from 5:30-8:30 and then it was time to get up for doctors, bloodwork, etc. She spiked another fever this morning as well as having some belly pain. They are worried about a bug but I think it is the Chron’s acting up a bit more than usual.
The third day, today, was much better as they changed up some of the pre-medication to prepare for the allergic reaction. She still go hives and felt yucky but she said she felt a bit better. She is having this same infusion tomorrow and then she starts a chemotherapy drug on Tuesday. Tomorrow I meet with members of her team: dietician, child life, and social work to build a plan for her when she goes into isolation.
Ryleigh had a better day and had a craving for a steak and cheesecake. Yes, Ryleigh, let me whip that up in the mini kitchen with a toaster oven and microwave! So seeing that I need to get as many calories in her as possible I went to the Cactus club and ordered a steak (no sides) and a piece of cheese cake. Chloe and I went to pick it up…wouldn’t you know it, I forgot that it was the Superbowl…the place was very busy. Chloe and I decided to have a bite to eat while we were there and then took Ryleigh’s steak and dessert up to her. She ate a little bit of the steak and about 2/3rds of the cheesecake. I think this is the first time Ryleigh has had steak since 2010? She did enjoy it!
She is with Chloe right now watching a video in the room. They kicked me out for sister time – which I admit I was a bit envious…I wanted to spend some time with the girls during which they were both more happy, fun, and playful. joyful. But, I also appreciate the need for them to have some precious, positive time together – they are such good friends. They are good for each other and Mom just gets in the way!
I am struggling with the juggling of all my jobs and responsibilities but I am thinking that will become easier as we begin to readjust to hospital life. Chloe is really trying to step up and be a help…however, I caution her not to do too much as she pays for it at night or the next day with excrutiating pain. I need to remind her to pay attention to her body and remember what she is learning in her time at counselling and pain group. The best thing she can do is be with her sister so that I can be free to do some of the chores that need to be done.
Ryleigh is very apprehensive to have me gone from the room. She wants me there but somewhat invisible until she needs me. If I leave she wants me back as soon as possible. She worries that something will go wrong or that doctors will come and she will have to make a decision about something. I know that this is a result of all of the happenings that happened last year. We are working with her to develop some coping skills for these worries. But really, I can’t fault her for needing support.
For some reason, I thought that this would be easier than last year because we know the steps, the risks, and the plan. But in some ways it is more difficult because we know the steps, the risks, and the plan. The idea that we made a decision to make her sick so that her body can get better is such a confusing concept. Yet, that is exactly what is happening to her. She needs to get even more sick and compromised then she is now…so I breathe and try to not think to far ahead and be in the moment. I let myself process the fears and anxieties I feel and then try to be strong and calm. I am told I need to take time for myself or I may get run down. Frankly, I am passed being run down…but I have learned to take mini breaks (kind of like a timbit instead of a doughnut) – I indulge in something that reenergizes me even if it is for 5 minutes. It can be a walk to the parent lounge to read a gossip magazine – now those famous people really have troubles! Or I read a book, colour, breathe and meditate in my chair (the IV has an interesting rhythm), blog, a walk outside, sip a glass of sparkling water as I imagine I am sipping on a sparkling cocktail at a poolside somewhere warm,or….the list can be endless. I cannot fit in much more then these moments but they help me reconnect with the strength of purpose and resolve that I need to have. It is not easy and I am not saying I don’t have those moments when I am in the car weeping wondering how I am going to endure at least 30 more days of this. But I get out, feel the sun (yes SUN) on my face and walk back to Ryleigh’s room ready to face whatever may come our way…Take time for moments and remember sometimes things do have to get worse before they get better.