Today Wayne actually received 9.2 million stem cells and the rest of the donor stem cells have been saved. The extra stem cells may come in handy, should Wayne need a little booster, (in the event the stem cells he received aren’t quite doing the job) we can send in the reserves. So for now, we have them safely frozen and stored away until they are called to duty. The stem cells Wayne received today were actually extracted from his donor yesterday morning, flown to Salt Lake and then put in a special machine to count. Each and every stem cell goes through a sort of cleaning process, which explains why his bag of stem cells doesn’t have the red color that a bag of blood would have. The stem cells are given to Wayne fresh – fresh is always better, but not always possible, especially if your donor is not here in the USA. Should the stem cells come from an international donor, the stem cells would have to be frozen and then flown to the USA. Who knows, one of your fellow travelers could have been stem cells as they are often travel on commercial flights.
They really packed them in there – this is the bag of stem cells. Can you believe there are 9.2 million stem cells, YES 9.2 million stem cells in this one little bag!!!! How do we know this, well there is a machine that counts the stem cells to be sure there will be enough to do the job. A lot of time a donor will give about 5 million stem cells per day/extraction. Wayne’s donor was very generous, so generous in fact he actually donated 13.7 million stem cells from one extraction.
Wayne will be receiving the present of his life. How does the donor do it?
Once the prospective match was made, the donor was sent through a counseling session to help prepare them for the emotional burden of being a stem cell donor. After the counseling session, he was then given a complete physical, making sure there were no underlying issues that could become problematic for Wayne.
Wayne’s donor will be giving him stem cells that are collected from his bloodstream; this is called a peripheral blood stem cell harvest. It is important to collect as many stem cells as possible. To maximize the amount of stem cells found in the bloodstream, starting August 15th and continuing for the following 5 days, the donor has been receiving an injection of a drug called filgrastim (Neupogen is a pharmaceutical name). This drug helps move the stem cells out of the donor’s bone marrow into the donor’s bloodstream where they can be collected.
Collection of the stem cells is done in an outpatient setting, where the donor will sit in a comfortable recliner. The donor will have a needle inserted into both arms. Blood will be withdrawn through the needle in one arm, passed through a machine that separates the stem cells out and the rest of your blood is returned via the needle inserted in the other arm. Depending on the number of stem cells harvested each time, the process may take 2-5 days to collect enough cells for transplantation (this would be countdown days -2 to 0 for Wayne). The donor will receive blood-thinning medications before the stem cell extraction begins.
Some donors can feel light headed, cold or numb around the lips during the collections. Other donors can experience cramping in their hands, most often caused from the blood thinning medications given which can also reduce the calcium level in the blood. The cramping resolves after the harvest has been completed with the administration of calcium supplements. Other possible side effects include bone pain, headache, fatigue and nausea, which frequently resolve over the next 72 hours.
After the peripheral blood stem cells (PBSC) have been collected, they are flown to the hospital. While relaxing in a comfortable recliner, Wayne will then be given the PBSC. This wonderful gift essentially looks like blood transfusion and will only take about 2 hours to receive.
For the transplant to be successful, both Wayne and the donor must have a similar tissue type, so a hunt for a best donor started. A person’s tissue type is defined by their genetic markers, which are inherited from your parents, so the first place you look for a match is with your brothers or sisters – Wayne only has one. Each sibling has a 25% chance of having the same tissue type as a brother or sister so it is not too surprising there was not a match. What now? You call on the kindness of a stranger from the Be a Match International Registry. There are millions of potential donors worldwide (there is only one Donor registry in the World) and still there are many patients who cannot find a match. Wayne was one of the lucky and a donor was identified with a 10 for 10 match, the perfect match. A 10 for 10 match means Wayne and the donor have the same 2 alleles for 5 different proteins, in the same location. Alleles are part of your genetic code, you receive one from mother and one from father. * This is a math test- 5 alleles from Wayne’s mom + 5 alleles from Wayne’s dad = 10 : 10 = 5 alleles from donor mom + 5 alleles from donor dad. Okay, that is the important stuff, but we still do not know who the donor is. This is what we do know, the donor is of European descent living in the United States, ranges in age between 18-44, living in a area where the risk of West Nile Virus is negligible (must be a city slicker or live in a dessert?). We will have to wait until 8/22/13, an entire year, before we can learn the true identity to our generous donor, until then he remains a mystery.
Today is Day -1. I’m excited for the transplant and to begin the positive days. As for today, things were a little tougher. I can’t seem to kick the nausea which makes my head cloudy. Even with that I was still able to do my daily laps and even ended up keeping some food down. I ventured to eat some french fries with ketchup which finally had some flavor. Its not the grill but it’s keeping me up right.
Today I finished the last dose of chemo. That makes me very happy because I can tell I’m ready for a decent sleep. I apologize for not having communicated or answered emails like I was hoping to. I’ve felt a little dizzy but hope I can respond by the day after tomorrow. I’m lucky to have such attentive nurses but having them come in every 30 minutes isn’t especially helpful either.
I’m ready to call it a night though. Tomorrow is the big day. I will receive my transplant though the IV near my chest. It is only supposed to take about 2 hours then I begin the 4 week process of recovery. It will take some time after that for the transplant to completely graph which the doctors and staff will be watching closely. I’m very excited to report back to you how it all goes tomorrow. I will be thanking my donor all day tomorrow.
(written on behalf of Wayne by Dustin)
Ok, so I know I told you the room service here is better than a Marriott; you call, place your order and it arrives in 10 minutes. You better know what you want as there no chance to change. I have figured out how they do it – there are only a few patients who can or want to eat. Never did I think there would be a day I would not want food. Oh well to better days…. Bon Appetit – W
DAY 3 – No really this is Day -4 Countdown to transplant
What day is it ??? The days before Wayne receives his transplant are considered negative days, or count down days. Wayne was admitted to the hospital 6 days prior to actually receiving his transplant in order to prepare him. (Sadly, these days do not count towards the magic 100 days of isolation before he can slowly start to matriculate back into the world – boo-hoo.) Wayne must have both his bone marrow wiped out (thus the two different chemo medications) and his immune system wiped out (the reason for the antibiotics, antiviral, antifungal medications, etc.) in an effort to minimize the risk of rejection, which is called graft versus host disease. So, today is referred to as -4.
DAY 1 – Peeches
Wayne’s first day started with lab work. Next, he needed to have his port removed and replaced with a new Hickman catheter. The port he had was not readily visible, which thrilled Wayne, he could continue on with life and no one, including Wayne himself, could readily see the reminder that he was undergoing treatment (his port was located under the skin on the upper right hand side of his chest). The catheter and port are tunneled under the skin and fed through a vein near his neck down to a larger vein near the heart. The new Hickman has 3 lines (the port only had 2), he will be receiving multiple medications concurrently and he will need to have a lot of access. Of course, he did have to wait at bit before they took him back to do procedure, which did not bode well for the department performing the procedure, however I am sure this will be corrected in the future once they take into consideration his time management and scheduling recommendations!
He was then admitted to Bone Marrow Transplant Unit where they immediately started giving him meds. This first day the medications are preventative, to ward off seizures, liver and kidney failure. He strolled to the Bistro for dinner – the first and last time he will be out of the unit until his discharge. Good night.
Another beautiful day, sun is shining, at least for me up here on the hill. The rest of you must be under that layer of grey smoke. I can only imagine what breathing that air could do to you! Kidding aside I would like to say my thoughts go out to all those who are in the area or close to someone fighting the fires.
For me, day -3 is a little rougher than the previous but still I feel strong. I’m now taking more pills than food and getting more IV medications than I ever thought possible. It goes out as smooth as it goes in, if that counts for anything. I definitely feel better in waves, depending on which medication they are giving me .
Lucky me, I have family members who take turns visiting me, this will make the journey easier. We’ve definitely done some good scheduling making sure there are only 2 visitors in the room at a time. The room could actually fit a few more but there is no budging on the 2 rule, rest assured we have put this to the test to see if they were not kidding!!!!!!
Alive and kicking -W