Ryleigh is admitted and she has started the process…
Yesterday, Ryleigh spent her day preparing and having surgery to have her central venous catheter inserted. The catheter is a thin flexible tube that lies under the sking and creates a safe way into a major blood vessel. The CVC makes it possible for her to have treatments and regular blood work without having needles and pokes. This allows for less pain and less damage to blood vessels and tissue from standard intravenous therapies. She was in good spirits once she woke up and got settled in her room on 3B. This will not be her permanent room (thank goodness as it is very small!). The day before her transplant she will be moved to a room prepared for Stem Cell Transplant patients.
Ryleigh is on a countdown towards the transplant. The countdown is the time that she has to have her preparation regime. This is the time she receives the chemotherapy to basically remove cells or parts of the blood system that may be causing her disease and to clear the bone marrow space to make room for her transplanted cells. Today is -11 and she is receiving a drug called Anti-thymocyte globulin or ATG. It was a six hour infusion for her today. She had a bit of an allergic reaction to it causing hive and itching. She also had a bit of a fever and severe chills and shakes. She receives this drug Feb 1 (Day -10), Feb 2 (Day -9), Feb 3 (Day -8). She will feel like she has a bad flu bug and as the days progress her blood counts will drop and there will be an increased chance of infection.
She will receive other chemotherapy drugs from Feb 3-10 (As we get to those I will explain the type of chemotherapy and side effects). These are Day -8 to Day -1. On Day -1 Ryleigh will be moved to her transplant ready room.
Day 0 is scheduled for February 11. We then wait until her bone marrow takes those seed cells (stem cells) and creates a newer system so that she can hopefully be chron’s free for awhile.
Ryleigh’s spirits are mixed… which is to be expected. She is hopefully cautious. She asked me today what we are going to do if this does not work. I told her we would search to the ends of the earth for even more specialized doctors and care! We joked that if this had to happen it would be in some place like Hawaii, but she said knowing my luck it might be in Idaho (not sure where she got Idaho from…but it was humourous).
Ryleigh is making more of an effort to be the “captain of her care”. She is communicating with the medical staff more readily and is being honest about how she feels or does not feel. I am trying my best to be in the background supporting and not taking over too much. When she isn’t sleeping we have been watching this season of Criminal Minds — makes our problems look like a picnic. We really enjoy the show and the characters and it is a good distraction from all the hospital noises and action.
Unsure of how Ryleigh wanted to deal with the next month or so, I asked her if she wanted a plan for each day and know what is to be expected. She said, “Nope, Mom I just want to wing it! That way I don’t have to worry about what is going to happen I can just deal with what is happening right now.” I would say that she is being mindful of where she is in the moment and not focusing on too much of the What if and so forth. I admire her for that….I can only be mindful and be in the moment once I have figured out all possible outcomes and a plan to deal with them in my head at least! I know this is futile because the what if list is infinite but I am okay with that.
Chloe has become quite comfortable in our little apartment. Even though she misses the two of us, I am confident she is enjoying the independence of staying by herself in the heart of Vancouver. Good practice for when she is ready to move on to life after high school. She is managing her pain in such a responsible and thoughtful manner. I forget sometimes that she struggles with the pain throughout the day as she has learned and is using strategies to overcome the pain and keep on with her day.
I am not as energetic as I was a year ago – I am sure it is the combination of being one year older AND having gone through a traumatic year already and not really having a chance to recharge. I am sleeping at the hospital which involves interrupted and short sleep times. I went back to the apartment today and had lunch and an hour nap just to reenergize. Ryleigh is not quite ready to be by herself at night but I am confident as she gets used to the nurses and routines I may be able to crash at home for 4-6 hours.
As we finish Day -11, I am thankful for the incredible care she has received, for Ryleigh’s winging it attitude, Chloe’s ability to go with the flow, and the strength of two amazing daughter who help me be strong!!!