Thursday, October 9th, 2014 – 327 Days Post Leukemia Diagnosis – Pre Transplant

Hey everyone! Today is Loverman’s birthday! He’s 48 years of awesomeness! Yay!

He woke up this morning and mumbled something about it being his first birthday with cancer. =( Yep! It sure does suck that he has cancer, but at least he’s still alive and therefore MUST celebrate life! I was worried about getting him something super awesome and fabulous for his birthday, but then I remembered, he already has ME! Ha!

loverman birthday

If there is one thing cancer hasn’t done is take away his sense of humor or his ability to be a smart ass little shit disturber. I’m always on him about drinking water! He doesn’t drink enough water and that is important when you take chemo every day. So this morning I got upset with him, again, about not drinking enough water… BUT it IS his birthday, so I gave him some water and gave him a hug.

Then he poured water on my head and laughed and laughed and laughed.

I have all the faith in the world that leukemia will not kick his ass, but I might!

Life has just been pretty insane the last 2 weeks with doctor appointments and trying to get our affairs in order before we need to relocate for 4 months. Also, Kevin is not tolerating the new TKI chemotherapy very well. It his causing severe stomach issues, pain and extreme fatigue, so taking care of him is a priority. I also have to take care of everything he can’t help out with anymore. I’m managing, but it’s tough. Thank the lord for COFFEE and humor… and sometimes wine… and chocolate!! Oh yeah, and LOVE. lol Without it all, I would be bouncing around in a padded cell!

So here is the low down and a few things that have happened since my last post:

Lexie vowed to cut her hair off and donate it for cancer. By September 25th, she raised $583.00 for the Terry Fox Cancer Foundation and then had her hair cut off in front of her entire school. That happened the day that we were meeting with the transplant team, so I didn’t get to see it in person, but her friend got it all on video for us! We are extremely proud of our girl!!

lexOn September 28th we hosted a mini “Bloody Awesome” Light the Night walk here in Kingston with some of our family and friends. We lit up the night and raised $600 for the Leukemia and Lymphoma Society of Canada… That’s pretty good considering I organized the entire event in less than 2 weeks. Next year we hope to organize an even bigger walk in Kevin’s honor.

I planned a surprise birthday party for Kevin last weekend, which was a success. He was surprised, but not everyone could make it because of the short notice. I had to wait until we met with the transplant team in Ottawa on September 25th before planning anything because we just didn’t know how fast the process would take. So I fired off virtual invitations to everyone I could think of on the 26th of September and the party was on the 4th of October. Pretty lickity split, but it was the best I could do. Living on the edge and on short notice has become a new way of life for us since we found out about the transplant and it’s not going to get any better any time soon. It’s just something we have learned to accept.

Today I called the transplant centre hoping we would find out that they successfully found a bone marrow/stem cell match for Kevin. Instead I was told that the unrelated donor search has not yet been finalized thanks to a lot of administrative confusion and miscommunication between the Toronto, Kingston and Ottawa. We were told that the cancer centre in Toronto was going to start the search on September 2nd and just transfer the results to Ottawa. They took all the blood work when we were there and told Kevin they should know if there is a match in about a week and a half. The doctor said that it was important to get the process going ASAP because of Kevin’s circumstances. Well guess what? They didn’t start the search. I was afraid that would happen. I had a gut feeling it would and it did. I was assured today that everything is officially underway and we should have an answer soon. I guess that’s better than nothing. But if anything bad happens because of this malpractice, I’m going to snap. For now, I will keep it together and we will keep going!

We are going out this evening to have some dinner with family and friends and celebrate Kevin’s birthday. Then I’m going to crash and burn and get a good night’s sleep…. maybe. LOL

That’s all for now folks! Thanks for stopping by!!

 

 

 

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