You may or may not know, but our first goal after transplant is 100 days of healthy! Today is day 47. That means, we are almost halfway there! Many people have been massaging me or calling as I haven’t been updating as frequently, so I thought I better get on it!
Mark has been doing well. He had been labeled “boring- and boring is good” for a while. He isn’t quite as boring these days…. A little bit of Graft V. Host, a CMV virus, and medications he is on being a little hard on his kidneys and liver. So, medications have increased and decreased and he has felt a tiny bit bad most days. But, the HVGD being minimal is a good thing and also means that if cancer tries to rear it’s awful head, the new stem cells will most likely attack it. The CMV is being controlled with medication, but it’s still hanging on and needs to be watched. He’s gone without Tacrolimus (immunosuppresant) and Magnesium for 6 days (including tomorrow) and we are hoping his liver and kidney function numbers are better again by Tuesday. There have been constant changes in medications for a few weeks… And just being on so many medications is a big adjustment for this family who normally does things naturally, without medications.
In the mean time, Mark’s step mom is our second helper that came out to stay with him for a week so that I can be at home with our girls. This marks the first time in over four months that I have been able to be home and just focus on my girls and the things that need to be taken care of around the house. It’s been amazing how much I have been able to accomplish in the past four days! My goals have been pretty simple, I needed to get our home put back together as we had his dad and step-mom here when this all first happened and so beds were added to our basement and some of our entertainment pieces had to be packed away. Then, more recently, Shyanna went off to college and so room changes happened and something had to happen with the things she left behind. The house is looking more put together…it makes me feel good. I have been able to pour my time and attention, otherwise, on the three I have left at home. It’s also made me a little weepy as I realize more being at home that Shyanna isn’t home and I do miss her! (She is doing fabulous at college, by the way! She is loving it! No surprises there! SO happy for her!)
It’s hard on Mark that we are together without him, but it’s honestly been such a long four months for our girls to have to live pretty much without parents. It makes me glad now that at least I am able to be home with them part-time while people come and help take care of Mark. Can you imagine being 13,15,17 and 18 and suddenly, you are left in charge of each other, yourself and a home? I am so proud of our girls!!!! The worst that has happened has been forgetting to take the trash out, a little bleach mishap and a little white-out taking the finishing off our dining table. That’s pretty darn good, if you ask me!
Today, we will have some family time and tomorrow we will, too! Relationships used to be important to me… but now they are even more important. Illness can bring such torcher, heartache and pain, but it can also be a gift in showing you who and what really matters. And, THAT is what really matters.