I apologize for the delay on posting updates. As usual bad timing seems to be my path in life….my computer decided to not work for me…the keyboard was selective in letters I could use and as a result my writing became quite cryptic! So, the computer is getting fixed and I am using the computer kiosk’s on the 3rd floor of the hospital. Getting time to sit and reflect away from Ryleigh’s room is challenging and I definitely appreciate the convenience of my lap top. Hopefully it will be fixed this week.
The best thing so far has been the continued strengthening of the bond between Chloe and Ryleigh. Ryleigh looks forward to anytime she can spend with Chloe — they are both so grateful to see each other that typical sibling rivalry or bickering does not happen. They truly are friends and enjoy hanging out together. I look at them and have a sense of relief that they have each other and it is one less stress for me to have to figure out — refereeing sibling quabbles is not my ideas of a good time! Instead the giggles, fun, and discussions are better and way more relaxing!
Ryleigh has continued to receive her chemotherapy. Her counts are slowly decreasing and we are preparing for her transplant on Tuesday. Today we are organizing items for inside her room and outside her room. Her room will be totally “clean” of as many germs as possible. We have to clean off every item we bring with special disinfectant wipes (industrial version not lysol wipes from the grocery store!). Laundry will need to be done every day – including her favourite blankets and pillow as she has to wear clean items everyday. We have to as well so I will be doing laundry frequently. Ironically she is most at risk for the bacteria and viruses that she already has. Once all of her cells are depleted the “germs” think that they are free and clear and can come out and play!
I have met with the dietician and they should grant the certification for food safe as I have learned all about shopping, preparing, and cooking food that is as limited in germs as possible. There is a kitchen on the second floor that I will be using to prepare meals for her as meals should be served to her within 30-60 minutes of preparation or bacteria will start to grow.
Ryleigh’s transplant is on Monday and then things will get “interesting”. Because she will be at risk for infection it will be worrisome and difficult. We are hoping that she will go through with no serious issues and be discharged in a month! That would be awesome…but not holding my breath.
Ryleigh is finding her voice and is being more open and honest about how she feels and how she needs to deal with all of this. She let us know that socializing and having discussions for long periods of time is exhausting. She finds it very trying to answer lots of questions and interact with the support team members like physio, psychology, child life, and nutrition. So I have advocated that she be given the basic information, she does not need lots of explanations, and then for her to set a goal or plan. She has been focused on her physical self and is slowly understanding how her feelings, thoughts, and emotions play an important role also.
I am finding balancing all responsibilites still challenging but getting into a bit of a flow and schedule and figuring out best times for availability of laundry machines, showers, and kitchen as these are all shared. Spending some down time with Chloe is important too and I usually go home and tidy up a bit and have a visit and coffee with her. I am also learning to nap once in a while when Ryleigh naps as sleep is in small chunks through out the day and night. Brings me back to the days of having babies…empathy for those young folk in my life who have just had wee little ones — Alex & Nolan — Jenn & Anthony CONGRATULATIONS on the arrival of your precious little girls!!!. Remember the “chores” can wait as sleep and taking care of your own health is important so you can then take care of your child.
All three of us have talked about the normal activities we might be able to do once Ryleigh gets better – walking our dog on a trail, riding bikes, going to school, doing chores around the house, visiting friends, sleepovers, and get togethers. We are glad to be coming home as spring begins to start in Vanderhoof. Having some hopes and dreams about the future is important as we head into a month of isolation and difficulty.
Lots of love and laughter to everyone who is thinking and caring about us! We truly appreciate all the support.