Hey everyone! Today is DAY +565 post BMT for Kevin. Life has been busier than busy, so I haven’t posted any blog updates in a while. But also, unfortunately and fortunately, nothing much has changed health wise for Kevin since the last update. I say unfortunately and fortunately because unfortunately Kevin is still dealing with GvHD (Graft vs Host Disease), but we are aware that he is very fortunate to be alive. And being alive is really all that matters at this stage. Some days might really suck, but there are some transplant patients struggling with major GvHD issues. Issues that would make you cringe! And some don’t survive. So every day that we get to see the sun rise and set, is a good day, my friends.
I can’t believe another summer has come and gone! Kevin did pretty well during the summer months because his Prednisone and Immunosuppresant doses and ALL of his other medication doses were not tapered. He still struggled with some GvHD symptoms and we had to go to Ottawa for his appointments, but for the most part, he was okay.
This week has been a tough one because his Prednisone dose was recently tapered from 15mg to 12.5mg. This is the first time the dose has been tapered in months and he is definitley flaring. He is having some skin issues, bone pain, shortness of breath and also stomach issues. Tonight his stomach is especially upset and in pain, so I’m a little worried. He hasn’t vomited since last year and he did tonight. I also didn’t realize he was having shortness of breath until we were out walking around outside today, so that is concerning. But we are in Ottawa until tomorrow, so I guess it’s the best place to be if anything is seriously wrong. He says he’s feeling okay now and I’ve finally convinced myself that I can’t panic every time Kevin isn’t feeling well. So that’s good because he REALLY hates it when I do that. lol
This is the third attempt to wean Kevin off of the post-transplant drugs. Eventually, long-term use of steroids and immunosuppresants will destroy bones, muscles and organs. So it’s important for him to stop depending on these drugs, if possible, as soon as possible. But if the donor cells furiously attack his organs, he has no choice but to keep taking them until they stop working or the doctors decide to try a more invasive treatment. We are still hopeful that things won’t come to that. But it’s all out of our control. So we continue to watch and wait. We are pros at that now! 😉
In other news… A few months ago, we were told that our Awesome and Beyond Canadian Blood Services Partners for Life team was chosen as the 2016 Partner for Eastern/Northern Ontario, Manitoba and Nunavat. WHAAAAT?! Yes, I know. It’s crazy. But totally awesome. So of course we accepted the nomination, on behalf of all of our Awesome and Beyond PFL team, and tomorrow is the National CBS Honouring our Lifeblood awards ceremony in Ottawa. We travelled to Ottawa today and enjoyed briefly meeting other Honourees this evening. There are some amazing people here from all over Canada. Now I’m wondering if Kevin should have came with me. We know it’s a risk for him to be in public because he is still immunocompromised. But he was really looking forward to it and as usual, we will try to minimize this contact with other people. It’s really hard because if he doesn’t get out and do SOME stuff, he will go crazy. Mental health and physical health are equally important under these cirucumstances. I also keep reminding myself that he IS on several drugs that help protect him from viral, bacterial and fungal diseases. So I guess I will just be okay with that and try to stop worrying. HA!
I will post more about the Honouring Our Lifeblood event soon. I didn’t take a lot of pictures today, but I will have a lot to share tomorrow and Monday. Before I sign off, I just want to acknowledge our Bloody Awesome and Beyond Partners for life team, donors, volunteers and cheerleaders/social media sharers, who have joined us and continuously supported us on this journey. We couldn’t have done it without you! We love you and thank you for your awesomeness!!! Wait until you see our clothing for tomorrow!
I will leave you with some Grandman adorableness!
Our next group blood clinic is Wed, September 28th, 2016! Contact me if you would like to join us!
The most important and effective message that I repeat every chance I get is this… Even with the incredible state of the art medical advances of the 21st century, NO amount of money, chemotherapy or science can save many blood and bone marrow cancer patients. It takes more than that. It takes human blood and in some cases, it takes human stem cells and the courage and generosity of the people willing to donate them to complete strangers. In Kevin’s situation he needed both in order to survive. Without blood and stem cells, he would have died.
Well, that’s all for now folks! We would love to have you on our team. Just contact me, if you live in Canada.