After our appointment, we went to the Bone Marrow National Registry, better know as Be The Match. They are the organization that found Steven's bone marrow match. Steven had a letter for his donor. We found out that the rules in Europe are different than here in the US such that we have to wait 2 years, not 1, to ask to have contact with our donor. They pass on letters/cards between donors and recipients.
We came unannounced, something I'm famous for. The woman we talked to is gracious to stop what she is doing and speak with us. It turns out her husband had a BMT 9 years ago, but didn't survive. Her story is one that makes me pause and think about how lucky we are. We made idle chit chat and realized that she too is from the Chicago area. And more unbelievably, she and her siblings were delivered by the physician that Steven's sister worked for! Steven and his family also went to the same doctor...what were the chances of that?
Saturday, October 8, 2016
Happy Birthday One Year! Day 365
Today is Steven's one year birthday of new life...his bone marrow transplant. It's hard to believe it has been a year. They have quite a day planned for us.
There aren't enough words to thank everyone involved with Steven's recovery. We don't even know where to begin....well, we are starting with Nothing Bundt Cakes for our oncologist and his team and then we plan on going to 6 East with a cake.
Our day is starting with a 7:30am blood draw and then a boat load of tests...a repeat of the same ones he had before his transplant. Blood is drawn and we are off to Pulmonary for a Ventilatory Study at 8am. It is over at the hospital so it's like a cardiac stress test to get there on time...and we are late :) Steven said it went well, way better than a year ago. So far so good. Next stop, Echo cardiogram at 8:45am then a chest X-ray, the last test before clinic with our oncologist. We have a little time to relax...5 minutes! Clinic is on the other side of campus and we can't wait to see what our results are like. If his blood tests look good, Steven will begin his childhood immunizations and get a flu shot as well. Then we can be out with the regular folk. We will find out the other test results at the next visit.
In clinic, Steven's counts look good. His WBC is a little low but nothing earth shattering. His counts look good enough to proceed with immunizations! At 6-12 months post transplant, he can get Tdap (Diphtheria/Tetanus), Polio, HIB (Haemophilus influenza), Hepatitis A, Hepatitis B and Pneumococcal vaccines. They will give him 3 in each arm...ouch! COH didn't have their flu vaccine yet (why is this???). We can wait until our next visit or get it somewhere else.
One more amazing step toward our new normal. I'm so happy he is starting his immunizations. We will come back in a month for more vaccinations, a blood draw and clinic.
We went to 6 East to say hello and thank whoever we could with a Nothing Bundt Cake. I wasn't prepared for my emotions coming out of the elevator. The experience of Steven receiving a Bone Marrow Transplant, so many unknowns, did we do the right thing....all of this came flooding back. I could barely hold it together, especially seeing some of the same nurses we had a year ago. It was wonderful to go back to 6 East but I'm grateful we return on our terms.
There aren't enough words to thank everyone involved with Steven's recovery. We don't even know where to begin....well, we are starting with Nothing Bundt Cakes for our oncologist and his team and then we plan on going to 6 East with a cake.
Our day is starting with a 7:30am blood draw and then a boat load of tests...a repeat of the same ones he had before his transplant. Blood is drawn and we are off to Pulmonary for a Ventilatory Study at 8am. It is over at the hospital so it's like a cardiac stress test to get there on time...and we are late :) Steven said it went well, way better than a year ago. So far so good. Next stop, Echo cardiogram at 8:45am then a chest X-ray, the last test before clinic with our oncologist. We have a little time to relax...5 minutes! Clinic is on the other side of campus and we can't wait to see what our results are like. If his blood tests look good, Steven will begin his childhood immunizations and get a flu shot as well. Then we can be out with the regular folk. We will find out the other test results at the next visit.
In clinic, Steven's counts look good. His WBC is a little low but nothing earth shattering. His counts look good enough to proceed with immunizations! At 6-12 months post transplant, he can get Tdap (Diphtheria/Tetanus), Polio, HIB (Haemophilus influenza), Hepatitis A, Hepatitis B and Pneumococcal vaccines. They will give him 3 in each arm...ouch! COH didn't have their flu vaccine yet (why is this???). We can wait until our next visit or get it somewhere else.
One more amazing step toward our new normal. I'm so happy he is starting his immunizations. We will come back in a month for more vaccinations, a blood draw and clinic.
We went to 6 East to say hello and thank whoever we could with a Nothing Bundt Cake. I wasn't prepared for my emotions coming out of the elevator. The experience of Steven receiving a Bone Marrow Transplant, so many unknowns, did we do the right thing....all of this came flooding back. I could barely hold it together, especially seeing some of the same nurses we had a year ago. It was wonderful to go back to 6 East but I'm grateful we return on our terms.
Thursday, October 6, 2016
T minus 7 days to Steven's One Year Birthday
I'm not where I thought we would be this time last year. When it looked like the stem cells would result in a new immune system, I started thinking how great it would be to take the family to Hawaii at one year and have an open house for our friends to celebrate. Not so fast.... We have come so far but we still have a ways to go. Our oncologist commented on our "set back" due to the red cell aplasia, meaning Steven needing to convert to a different blood type. It was rough and I didn't realize that this part of the bone marrow transplant could have failed. It was dicier than I realized or wanted to realize. That put us behind "in a perfect world". I'm sure the fact that the donor had a different blood type was weighed heavily. We were told there were 3 possible donor matches, our donor being 12 out of 12 but it isn't that simple. No one is really a perfect match because they aren't you. The COH team that Steven has decided on which donor to use, not our oncologist. I would love to know all the mitigating factors involved but I'm sure will not have that opportunity. I reflect that a year ago this time, Steven was going through the hell of chemo called Fludarabine and getting ready to be admitted to City of Hope on 10/3/15. There was so much unknown. We were totally driven by faith and scientific knowledge that we were doing the right thing.
I am eternally grateful that Steven is alive and functioning. Having been in healthcare for 20 years, I know that not every situation ends up favorably. Our one year anniversary is this Friday, 10/7/16, 365 days of education, hope and success.
I am eternally grateful that Steven is alive and functioning. Having been in healthcare for 20 years, I know that not every situation ends up favorably. Our one year anniversary is this Friday, 10/7/16, 365 days of education, hope and success.
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