Today is donation day!
After being on the bone marrow registry for 2 years we got a call that there was a cancer patient that needed a bone marrow transplant and Mikey was his perfect match. A month and a half later and a lot of tests, pain, and prayers we are here in Cali for the donation!
He's always been our hero, but now he's going to be someone else's!
October 17, 2013 will always be a day that I remember...
When our wake up call came at 6 o'clock this morning we were both pretty awake and ready to do this. We needed to be at the hospital at 7, we were able to get a ride from the hotel golf cart for the couple of blocks to the hospital. It was nice that Mikey already knew his way around. We went to the check in desk and that is when I was first not impressed. The nurses and staff were all really busy and didn't say much to us except "are you here to donate? Okay... just go find a place to sit in the room to the back and the left" with a frown and a bothered face. I guess I just thought we would be treated just as nice as when Mikey came to do the donation physical. We went and found the room and it already had a couple sitting in there. (This is when we first realized there would be no privacy the rest of the day) We introduced ourselves to the older couple and found out that he had a bone cancer and was here today to donate to himself. They were super friendly and this wasn't their first time here so they were really sweet and shared their knowledge. After about 30 minutes we finally saw our nurse. She came in and went over the schedule for the day and had him order breakfast and lunch (none for me). She said she would be back after he ate to give him his last injection and then have someone come take another blood sample. This was a surprise to us and Mikey could barely handle thinking about one more blood test. He has had to have at least 8 blood samples done this far!
Breakfast came and another room buddy showed up. He was a college student there donating the same as Mikey. His nurse was really great and I was kinda jealous we didn't have her. Our nurse {Miss Cranky} was really bothered any time I asked a question... like really! She would do a long stare at me and then angrily answer my question.
Getting the LAST Fligrastim injection was the easiest one Mikey said 1- The nurse knew how to do it better than our home health nurse so there was a lot less pain and 2- He knew it was the last one for sure!!
After more blood samples and waiting (a lot of waiting) it was time to go to the donation room. It was a room that had three beds with curtains dividing them. The room only had two chairs in it even though each patient is invited to bring a companion along with them. Our nurse made sure to point out that there were only two chairs in the room and that I might not want to stay in here the whole time. Really lady?! You think I'm just going to leave my husband in here?
Setting up the room, the machines, and all the IV's took awhile. Our home health nurse had done quite a number on Mikeys veins trying to get a blood sample so our nurse couldn't ever use that nice big vein because it was so bruised. Once she was able to get all the lines in it was close to 11 o'clock.
The way that PBSC works is they place a needle in each arm and your blood is removed using pressure to pull it out of the vein. It then passes through tubing into a blood cell separator machine. The blood is spun at high speed and the cells separate into layers. The
machine collects your bone marrow cells, some platelets, and some white blood cells. Your
plasma and red blood cells are returned to your body through the other
arm while PBSC is put into a collection bag. I think most people (including our room buddy- college boy, who elected for a PBSC donation instead of bone marrow donation) would choose this way of donation. But if the doctor would have given Mikey a choice he would have stayed as far away from PBSC as he could. He HATES needles and his veins would not relax and just let the machine take his blood. They continued to collapse several times and the nurse had to keep on trying different tricks to get his veins to cooperate. She had to keep on trading off which arm was the giver and which was the receiver.
It was so hard having a nurse that didn't want to talk to me when there was a machine's alarm going off every few minutes. I would text my mother in law pictures of his stats so she could let me know how she thought he was doing. He was in a lot of pain and we mentioned it to Miss Cranky Nurse several times, but she just kept saying "it should get better" and "there really isn't anything I can do". Come to find out when the head doctor made his rounds to come check on us and I mentioned that he was really in a lot of pain he said, "Oh there is no reason this needs to be painful, I'll order him something to help". But, Nurse Cranky only would give him half a does and when I asked later that day for more she just said a flat "No". She was awful!!!!
So after hours and hours, my poor hubby's donation was still not going very smoothly. There were several times when all three nurses would help work on him and try different tricks to get his veins to relax and cooperate. The older gentlemen that was donating to himself had a port that made it pretty simple to get the stem cells out, and college boys donation seemed to go well with his nurse that was on top of everything and awesome!
But he pushed through all the pain, the nerve wrecking alarms, and dealing with a cranky nurse. He really was such a rock-star all day!
When lunch arrived all the nurses brought their patients their lunches, but our nurse said he couldn't eat until after. Really?! So we watched everyone else eat with no real explanation of why he couldn't...
It was 5:15 and FINALLY there were enough stem cells that the donation could be complete! Mikey got all unhooked and he was really pale and out of it. His nurse made him get up and sit in one of the chairs and finally offered him fluids and his lunch. Once again things that everyone else was being offered during donation. (I was bugged!)
After he finished lunch, we saw his bags of stem cells whisked away
(Yay! Go and do your job stem cells!) We were then given all of his discharge
paperwork and headed back to the hotel.
A trained courier will bring Mikey's cells to the patient who is waiting at a transplant center for them. The transplant needs to take place in one to two days after the donation.We don't know were the patient is but we do know he is in the United States. The patient will be awake to receive the cells and they are infused through an IV. They say that most patients refer to transplant day as Day Zero or their "Second Birthday". The donated cells know exactly where to go in the recipients body. They move through the patients blood stream and settle in his bones. This is where the donated cells begin to grow and produce just what the patient needs to survive. We know it is a very scary and crucial time in the patient's life, and we couldn't be more grateful to be able to be a part of his healing process. We hope and pray that this will be a turning point for him.
When we got back to the hotel Mikey said he felt so relieved that it
all really worked and that he could already feel major relief in his
joints. He made some phone calls to concerned
family members and fell asleep. I couldn't sleep and ordered us dinner
up to the room, but could never convince him to wake up to eat it. When I
went to bed about 11:00 he was still fast asleep. Then, about 12:30 I
was woken up to him really sick. He was throwing up and couldn't stop. I
was kinda freaked out... I
went over all the discharge papers and this was not on any of the
side-effects or what to expect lists. I called the hospital and
explained what was going on, the on-call nurse said he would get in
contact with the doctor and call us back. Ten minutes later and Mikey
still throwing up I got a call from the doctor saying he thinks maybe he
needs some fluids and we could come down to the hospital and get an IV
set up. There was no way I was going to talk him into getting anymore
IV's!! I told the doctor we would let them know if we were coming down.
At
this time it was 1 o'clock in the morning and room service was closed. I
went down to the front desk to ask if there was anywhere I could get a
drink or snacks. He said that the bar was closing, but we could still
hear people down there. I went down to the bar in my sweats and of
course had no clue how to order anything. So I stood there awkwardly thinking that the waitress lady would come help me... she finally notice me and said I could just go up to the bartender and order... oh
I felt so dumb!! But I got some crackers and a water and sprite and
headed back to our room. Mikey was a complete mess. It was so
heartbreaking seeing him like this after all he had just gone through
today! By about 4am he had gotten out of the shower and tried to relax. I
fell asleep and he stayed up just feeling awful.
When I woke up I thought there is no way we are getting on a flight
today and planned to just call DKMS to reschedule our flights. But Mikey
was ready to just be home! He was still not feeling good, but after
talking with the hospital, he decided to just get on our morning flight.
The chauffeur wasn't suppose
to pick us up until 10am, but the front desk called and said he was
waiting for us at 9:30. We started to pack up our things and clean up
the room the best we could.
Once we made it to the airport I got a call from DKMS seeing how Mikey was doing and if we were planning to go home. I updated her on his night, but explained he was ready to be home.
The flight went smoothly and Mikey continued to feel slightly better.
When
we got home the boys were still at my mom's house, but had helped her
"Heart Attack" our door for their dad! It was such a sweet surprise and
we can't wait to snuggle those boys!
He has kept it easy for most
of the day and all my info from the doctor says after 7-10 days most
donors reported they felt back to normal.
We both feel so grateful for all the love and support of our great family and friends. All the texts and calls of encouragement were such a blessing and really helped. Mikey truly is my hero and I'm so lucky he is mine. He has been so strong and unconditionally giving throughout this whole process. We both know we wouldn't have made it through this without the strength and blessings of a loving heavenly father. Now we just hope and pray that these stem cells will go and do just what the patient needs! Prayers to you, wherever you are!
***Update*** 12/09/13 Email from DKMS
Hi Michael!
I
hope this email finds you well. We just received the first update on
how your recipient is doing, and I of course wanted to share it with
you. Just so you know what to expect, the
information we get in these types of updates is always very general and
does not give us anything in the way of detail, but what it does tell
us is that:
1.The patient has
engrafted your donor cells. This means that your transplanted stem cells have begun reproducing new blood cells inside of his body.
2. His recovery has been proceeding as expected, and he has encountered no serious complications so far.
3. The
patient has been discharged from the hospital. His transplant center
reports that he is doing quite well overall, and that he has been taking
walks outside
every day (this is a great sign of returning strength!).
This
is certainly encouraging news, and I just hope it feels good for you to
hear how much of a difference all of your effort has made to your
patient as he begins
to regain his health.
***Update*** 02/25/14
We received a sweet hand written card from the patient's family today! It doesn't say much... because DKMS has very strict restrictions on what you are allowed to say and don't want you sharing anything personal. It was really neat to get something from them though, and to know that he is continuing to heal.
