Day 4 -- In a Drug Haze

It seemed like Day 3 might never end, with blood products and drugs running long into the night. But, here we are on Day 4 post transplant. Tyler's throat hurt a little bit more today, but we see no signs of the fever and the coughing has essentially disappeared.

One of the side effects from his chemo yesterday are long bouts of violent hiccups. He had something similar with his cranial spinal radiation, but seems to be suffering through these bouts even longer.

Today, they started Tyler on his graft versus host disease (GVHD) drugs. GVHD is a condition where the transplanted cells (graft) attack the patient's organs (host). It often begins as a rash (as your skin is the largest organ you have), but can lead to even more serious complications. Acute GVHD occurs within the first 100 days post transplant, while chronic GVHD appears more slowly than that.

GVHD is more likely if the donor was unrelated to the patient or if there is a tissue mismatch between the patient and the donor. In Tyler's case, his dad is only half match (think back to High School Biology and genetics training -- half of the genetic material is from the dad and half from the mom) so it is likely he will experience some GVHD. In fact, some GVHD is good and is termed the Graft versus Leukemia effect. This recognition of the leukemia cells as unhealthy or foreign can reduce the rate of relapse, as the transplanted marrow and it's blood can kill off any leukemia that might be hiding in the patient.

Tyler's protocol called for the introduction of tacrolimus and mycophenolate mofetil today to combat the possible GVHD. He will likely continue to take those until 6 months post transplant.

Another new medicine today was Filgrastim. This injection actually stimulates the growth of neutrophils (a kind of white blood cell) in the body. Its goal is to help Tyler's new immune system grow as quickly as it can. He will likely continue to receive this injection until his counts have recovered.

We hope that Tyler does indeed continue to grow some new blood and new white cells. He got transfusions today and the last two days before that, so I am hoping that he can have a day off tomorrow. There are so many extra vitals checks with transfusions that it fills up the day a bit. With tomorrow being Sunday and Tyler (hopefully being filled up with blood) off from transfusions, we are hoping to watch the Superbowl in peace and quiet.

Our Home Away from Home

After spending almost 2 months at UWMC this fall, we feel like it is our home away from home. So much so, that we decided to check in the night before our scheduled visit here.

Actually, there was a mixup with Tyler's blood order and they didn't get it to SCCA in time to transfuse before they close. So, they transferred us to UWMC to get the needed red blood transfusions before his chemo dose today.

The chemo went fine today, with minimal side effects, so I am very thankful for that. We're hoping for a quiet night and then release tomorrow. Tyler had a fever last night, but it broke during the day today. He still wheezes when he exhales, but hasn't been coughing as much.

Cough, Cough

Day 2 Post Transplant

We have a new worry, as Tyler is coughing today. We called our team nurse and they added a chest x-ray on to Tyler's morning labs. Tyler is scheduled to check into UWMC tomorrow, so I think that helps them to sit tight on this cough for one more day. Today's labs did indicate a need for both platelets and red blood cells, so we are headed back at 6pm for a transfusion of each.

Tomorrow, Tyler will get a very large dose of chemo. The cytoxan that he got last week was a small dose (14ml??) and the one that he gets tomorrow is a large dose (50ml??), so he may have some increased side effects from that. The prime goal of the cytoxan dose tomorrow is to suppress Tyler's immune system and allow the new marrow to start working its magic.

Let's hope that Tyler's cough is something that can be treated with antibiotics and that it goes away quickly.

Small Joys in Life

Tyler and I each had a 3 hour nap this afternoon and, upon waking, I am so very thankful for these small joys in life. We are both the better for the rest and looking forward to another day of rest tomorrow.

We never heard anything about Tyler's blood test this morning, so I guess no news is good news. We expect he might need a transfusion of red blood cells tomorrow, as he got a platelets bag after the transplant and should have another day of freedom with the platelets bump he got.

Thank you all SO MUCH for the encouragement and celebration and prayer over the last two days. It's a blessing to us to know how many loved ones are sharing in this journey with us and wishing the best for Tyler. He's an amazing man and I am so excited for this first step on a journey back to health.

We are reading Lance Armstrong's second book, Every Second Counts. In it, Lance says "What surviving cancer teaches you is the magnitude of your dependence on others.... you're reliant on friends, family, and complete strangers..." Tyler and I feel this deeply, as all of you have become such an important part of our cancer fighting team.

Thank you thank you thank you!!

Day 1

Day 1: We are now counting upwards towards the 100 day mark when we get to transition to the long term recovery plan.

Tyler had a restful night and woke up to scrambled eggs for breakfast. We are heading down to SCCA for lab tests this morning. They will be monitoring Tyler closely for the next 30 days to make sure his hematocrit (the kind of red blood cells that carry oxygen) and his platelets (the blood cells that are responsible for clotting) are high enough to keep him going day to day.

We've entered a waiting period. About 2 to 3 weeks after transplant, we will see the first signs of engraftment. Most likely, this will be Tyler's white blood cell count showing it's first bump.

As he has virtually no immune system right now, we have to continue to be careful about infection. Tyler must avoid live plants, cut flowers, animals, and sick people. With that in mind we're going to try to hide out at home for the next couple of weeks. I've decided that our sole contact with the world outside should be through Netflix! ;)

Go stem cells, go!!

He's a New Man

After the transplant was done, you can see that Tyler looks much the same as he did before. We took him home to continue this ride from here. We have lab appointments only for the next two days, so we will be chilling out at home on Wednesday and Thursday.

His nausea got better after getting more medicine at the clinic, so I am hopeful that we will be able to keep things under control and allow him to eat a little bit more.

Size Doesn't Matter

After processing all of Scott's marrow, the bag of stem cells was significantly smaller. It turned out that 2.5 liters of marrow really only equals 176 milliliters of stem cells. This bag of healing power was infused over about an hour. By the way, this picture was taken right at the beginning of the infusion!

After all of the steps we had to take to get here, the actual transplant was pretty low key. It was just like getting a blood transfusion, which Tyler has had to do many times already.

The picture on the right shows the stem cells going into Tyler's Hickman line. You can see that he has two lines going directly into his veins. The tubing for any medications or transfusions are connected to the blue claves and then the liquid is fed through via a pump or syringe.

Boiling It Down

The marrow from Scott was taken to SCCA, where a specialized nurse ran it through the Apheresis machine to separate out the stem cells from the rest of the stuff they collected. You can see the 2.5 liters that they collected from Scott hanging in the big bags on the right side. There is actually a second bag hanging behind the one that you see.

Of the bags hanging up on top, the one on the right is the stem cells that had been filtered out when we went to see her. The one in the center is probably the "other stuff" that was being filtered out. Scott had the marrow harvested from his pelvic bone, which is a surgical procedure (with lots of sedation). Donors for other transplants that have the stem cells collected from the donor's peripheral blood would actually be hooked up to this machine for the harvesting. It's more like donating blood at your local blood bank.

Scott Bled-soe Much!

Scott's marrow harvest went well this morning, although he is quite sore now. They harvested 2 liters of marrow from him, so they were quite pleased with the collection volume. We talked to Kate a few times today and she told us that, although he is sore, it is possible he may get to go home this evening.

Tyler's infusion has been delayed by at least an hour as they are processing the marrow right now. They are using an apheresis machine to separate the stem cells from the rest of the stuff they collected. They tell us that it will take about 45 more minutes before the stem cell bag is ready to go. I've got a picture of them processing Scott's bag of marrow, but will have to post the picture from home.

Tyler has been queasy since finishing his radiation yesterday, so we're trying to get him more anti-nausea medication and then allow him to rest while we wait. We also are awaiting blood test results to see if he needs a platelet transfusion today. We hope not, but the numbers will be in soon.

Transplant Day!!!!
Day 0

Transplant Day!!!

Tomorrow (Tuesday) is transplant day! Scott (Donor Dad) is scheduled to check into UWMC at 5:30 am for marrow harvest, and then Tyler will check in at SCCA's outpatient clinic at 2:00 pm for marrow infusion. Afterwards, we take Tyler home and hope that the marrow takes hold and goes to work making new healthy blood.

We would appreciate all prayers to be said for both Scott and Tyler, and for the blessing of wise and compassionate care from the doctors and nurses around them both.

After the transplant, we begin the waiting period. Waiting for Engraftment is a 2-3 week period punctuated by frequent blood tests. The goal of this phase is to get Tyler's immune system to stay asleep while Scott's marrow travels to Tyler's bone marrow bed and begins to make new blood cells.

As the new blood begins to pick up, Tyler's body should begin to repair itself. He's got some recurrence of the mucositis, but we hope to keep it more under control with pain meds more often. I'm also hoping that it doesn't get as bad this time, but for now he is eating and drinking more carefully and living with more pain than normal.

Transplant -1 and counting...