Thank you to everyone for their excitement, celebration and joy over the clean PET scan. We agree that it is truly an answer to prayers. And, while we are thrilled that the clean scan came earlier than expected, we are also very overwhelmed at the bone marrow transplant that lies ahead.
Yesterday, the director of the transplant team and the coordinator of the transplant unit came by to meet with us and go over the details and schedule for the bone marrow transplant (BMT). As previously discussed, all of the doctors are treating Parrish's Hodgkin's as a recurrence. Once Hodgkin's returns, there is an overwhelmingly high chance of it returning again, if a patient does not have a BMT. As one doctor put it, "without a BMT, I can tell you Hodgkin's will come back, I just can't tell you when." But, with a BMT, there is a much higher likelihood for a long term cure. Nationally, the statistics are 70% of patients have a life long cure. UAB has a slightly higher rate than that. So, all signs really point to a BMT, and the transplant team confirmed that view.
Despite realizing that this is what needs to happen, the reality of it actually happening is hard to comprehend. It is a big deal. And despite an autologous BMT being a rather "routine" procedure in the world of transplants, there is nothing routine about this in our world. We had an okay meeting with UAB's transplant team yesterday, but additional meetings today went much, much better. I toured the BMT unit (where Parrish will spend a lot of quality time), and tried my best to make nice with all the powers that be. I want to make sure Parrish is the favorite patient well before he gets there! (It helps to flash pictures of cute kids...and I am so not above pulling out the I-phone slide show.)
I know everyone has a lot of questions about the BMT, so I will try to answer some of them now. The most common question I get is how are they using his own stem cells, since he is the one with cancer. The cancer had not spread to his bone marrow (this time or back in1995), which is why they can use his own stem cells. And, using a person's own stem cells is much preferred to using a donor's because of there is no risk of rejection and no risk of graft versus host disease.
So what actually happens with a BMT? Before the BMT occurs, Parrish will have several procedures and treatments. First, he will have blood tests to screen for infectious disease, pulmonary function tests, chest x-rays, echocardiogram, and more. After all those tests are done, the doctors will place a central venous catheter in the left side of his chest--it is called a double lumen apheresis catheter. It will be used to collect the stem cells. (Parrish's other port, that is already in place, will be used for labs, chemotherapy, fluids and such.) After the line placement, the actual stem cell collection process will begin. Parrish will take neupogen shots at home for four to five days. The neupogen will stimulate his body to produce stem cells (technically called "neupogen mobilization of stem cells"). At the end of those four or five days, the doctors will collect Parrish's stem cells (called "apheresis").
Apheresis is done outpatient. Parrish will go to the BMT outpatient clinic where he will be hooked up to a machine that takes out his blood, separates out the stem cells for collection and then returns the rest of the blood cells back into his body. The doctors will harvest enough stem cells for two bone marrow transplants, keeping the extra amount frozen in the event additional stem cells are needed at a later date. The collection process takes 4 to 6 hours. The goal is to harvest enough stem cells over that time period that an additional day is not needed, but in some cases, a second day of collection is required.
About four weeks after harvest, Parrish will receive high dose chemotherapy. This high dose chemotherapy includes five doses of busulfan, all given outpatient over the course of a week. After the fifth dose of the busulfan, Parrish will be admitted to the BMT in-patient unit where he will receive two more days of chemotherapy (cytoxan and etoposide). Just how high a dose of chemo is it? Well, his hematologist said that it is 100 times stronger than the ICE treatment he is getting now. The BMT director said 20 times stronger. Regardless, it is waaaayyyyy stronger. Both of the doctors said that the high dose chemo is designed to kill everything bad and everything good in Parrish's body. It pretty much takes him to the brink.
After the second day of the cytoxan and etoposide, Parrish has a day of rest. Transplant day occurs the next day and is referred to as "Day 0." The transplanted stem cells will enter the marrow cavities of the bones through Parrish's lungs and spleen. The stem cells will divide and produce red cells, white cells and platelets (called "engraftment"). This process takes several weeks (3 to 4 weeks), and during this time, Parrish will remain in-patient in the BMT unit at UAB. He will have side effects like any chemotherapy treatment--nausea, loss of appetite, fatigue, mouth sores, low blood counts, and such (these side effects tend to peak five days after transplant). The doctors and nurses will manage the side effects with the same medications and/or transfusions like do here on the ninth floor.
During these three to four weeks, Parrish will be at a high risk of infection as his body rebuilds itself. Because of this, Parrish will be on a strict neutropenic diet (in a nutshell, nothing raw, including salads for 30 days...nothing that was made and then frozen....nothing packaged with an insanely ridiculous shelf life...nothing from restaurants with below 90 health rating). If you want more info on his diet restrictions during this time, I have lots of literature! In addition, Parrish will only be able to drink water that is filtered or bottled, no tap water of any kind. The BMT unit also is highly regulated--you have to have a passcode to enter, all rooms have a special air filtration system unique to that room to keep germs from spreading, no live plants or flowers are allowed anywhere in the unit, all electronic devices used by patients must be screened, visitors are restricted to a certain number, and no one under the age of four is permitted in the unit. So, that means Ivey and Campbell won't be able to visit. Ugh. A month without seeing Daddy...can't even go there right now.
After being discharged from the hospital, Parrish will have daily check ups for about a week, and then weekly visits until day 100. At day 100, Parrish will be released back to the hematology folks where he will proceed with the normal post-cancer treatment follow-up (blood tests, scans, etc.). In addition, Parrish will continue to be monitored by the transplant team for the next year or so.
So, when is this all supposed to start? The plan now is for Parrish to have pre-transplant tests starting on April 26th. Then, we would just go from there. From the pre-transplant tests to discharge date after transplant, it is about 6 to 8 weeks (only 3 to 4 of those are actually in-patient though). We can hope that Parrish will be out of the hospital in time to celebrate the boys' birthdays in early July...and with a little luck, maybe we can even celebrate our ten year wedding anniversary (on June 21st) outside the four walls of the hospital.
Again, the doctors are extremely optimistic about the BMT and have said to try and think of an autologous BMT as a way in which to administer extremely high doses of chemotherapy, rather than an actual transplant. The risks associated with an autologous BMT are minor...not anything like an allogenic (donor) BMT. So, we feel confident about the procedure. That doesn't change just how overwhelmed we (and especially I) feel about all of this. It is hard for me to dance a jig to celebrate a clean scan when I know what is up next. Honestly, those of us in the trenches are all tired from the last 9 weeks...and the next several months look to be even more physically and emotionally grueling. So, please keep those prayers coming (prayers for peace, for strength, and for some quality family time pre-BMT).
Parrish is finishing up the last round of treatment today and should get out of the hospital tonight. Just in time for the weekend! We will keep everyone posted as things progress with the BMT.
Love,
Molly
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