I will start off by saying that JOHN IS CANCER FREE! It has been the busiest week and super stressful at times and very long! But, I think all test results are in. We do know his bone marrow is clear and he is still 100% his donor.
Tuesday morning was his big 1 year appt with a billion tests. The day turned out way longer than expected - like 14 hours long and technically being admitted :)
This is one of our favorite PA's Melissa getting ready to do John's bone marrow biopsy. We definitely have our favorite PA's and Melissa is one of them. I actually request PA's for every single appointment :) This was John's 5th bone marrow biopsy (and I am pretty sure he won't need another one for another year now). But, it had been 9 months since his last one. I wanted to be "brave" and stay and watch the procedure. I have not watched any of them. I HATE needles and this whole procedure is about needles. John wanted me to take pictures too. So, I tried :) Yep, tried. I did not last very long. Actually I could not get past the 6 inch lidocaine shots. Tony - our nurse told me I should sit dow and I was like Why? He could tell I was not doing good. I moved and said "um, I'm leaving". Luckily I did not pass out though. It went fine, but I am glad I wasn't there. I could have done it for one of my kids, but I knew John was in good hands and I was not worried about him.
So, inpatient: John had tested positive for Epstein Barr virus twice and the 2nd time the number was really high. It is a nasty virus that they caught through a blood test before John had any symptoms of it. They had to do a cat scan to make sure it was not in his lymph nodes (gratefully it wasn't). And then treat it with an infusion of rituxin. It is a 4 hour infusion once a week. The Doc wanted to start it that day, but by the time test results were back, it was like 3 pm. The clinic closed at 5, so John had to be admitted to get he infusion. And it took a couple of hours for them to get it ready. So, I came home got kids from school, did dinner, bed and when back and got John when he was done at 10:30 pm. He had been there since 8:30 am. It was a long long day. Tons of blood work, GVH assessment, cat scan, bone survey, bone marrow biopsy, infusion of zometa, chest X-ray, and then the rituxin. He never even made it to his pulmonary test. He was so tired. Oh and then after more blood work that day, it came back testing negative for Epstein Barr. It is gone and the infusion was not necessary :)
In one week we will meet with a Doc to go over all the results. We can see them all online so we know what is going on. But they will talk more specifics and tell us what is next.
SO - onto the next thing: John's bone marrow drive. He has been planning this for months and was so excited to be there for this one. He was super sick and slept through the one he planned last year. It took a lot of work and a lot of planning and organizing. But, everything came together. He even contacted the Red Cross and they came and did a blood drive at the same time. It was perfect.
Two of our favorite nurses Aimee and Amanda came and volunteered all morning. They both joined the bone marrow registry and Aimme donated blood too. We love them.
John went through training and became a Volunteer Ambassador for Be the Match. So he could run his own drive and can do others too.
Our good friends Chris and Rebekah drove about 40 min to come. Chris is a patient we met on East 8. He had a haplo transplant. He had no matches in the registry and his sister was a half match. His transplant was Oct. 28 (I only know because it is my birthday). He is doing great and is even back at work full time. Rebekah came and donated blood. It was so fun to see them.
Aimme and I.
YAY - I am in the registry too.
Another one of our favorite nurses, Lauren came to join the registry. We SO love her. When John had his first transplant she was his nurse for 10 out of the 20 days he was there.
John added about 30 people to the bone marrow registry and we had about 18 people come and donate blood. We gave out bone marrow registry kits to several nurses at the hospital too and even one of the PA's who was not in the registry. I am amazed at those East 8 people who are not on the registry!!!!
We are so blessed with so many people that volunteered time, money (he raised over $700 for Be the Match), people made a ton of goodies (that we had and asked for donations), ward members, friends and family came and gave blood and those that could joined the registry. It was a great and tiring day.
Oh - and I gave blood for the first time EVER. It wasn't that bad. Even though I have my fear of needles. I was so nervous, but was somehow calm and felt totally fine. My BP was fine and I did not get light headed or anything.
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