Hyper CVAD B: Day +1

(Kurt getting spinal chemo 10/21-Kurt has not had any leukemia cells in his CNS. These treatments are preventative, as the leukemia can migrate into those areas.)

After 14 great days at home, we are back at UK for Hyper CVAD B Cycle. The best part about this cycle is that we should be back home after 5 days! We already are looking forward to being back in our own bed after the first night inpatient, but we know this time will be a little different for us at home too. Kurt has normally spent his "feel bad period" in the hospital, so he will be at home for that this time. We pray he won't feel terrible, that the meds we have to treat nausea and other symptoms will work wonderfully, that he can rest well at home, and his counts will recover quickly again. I am praying I can juggle taking care of Kurt with things at home too. Homeschool provides some really great structure to our day, but it is very hard for me to "let it go" if other needs arise. 

Since I haven't give an update in a bit, I'll back up and do that now: 

We came home from Hyper CVAD A cycle on 10/8 after a 16 day stay. We were so excited that we got to leave earlier than we originally thought! Kurt's counts were recovering really well, so we were able to be released to come home. There was some talk of going straight into Hyper CVAD B, but his platelet counts were a little low, so we got to escape home for some rest before biopsy and the next cycle. 

On 10/13, Kurt had his bone marrow biopsy at the clinic. I got to watch this one! Kurt is such a trooper through all of these procedures. He has never complained about any of them. The PA who did this biopsy was amazingly quick. Kurt said it was probably the best one yet. On Friday (10/16), we went back in to the clinic to meet with Dr. Ramlal and discuss the results. We had been told that Kurt may not be in remission after just one cycle and that proved to be the case. He has 7% of blast cells still present in the marrow. 

Timeline: 

Admission: 95% blast cells in the marrow 

Post Induction: 15-20% blast cells in the marrow 

Post Hyper CVAD A: 7% blast cells in the marrow 

The good news is that the blast count continues to decrease. The bad news is that it is resistant to chemo because of the MYC8 rearrangement. Less than 5% blasts in the marrow is usually the threshold for remission, but we are shooting for 0 blast cells as we head into transplant. Dr. Ramlal explained that the plan forward is to complete the Hyper CVAD B cycle and do another biopsy on 11/6. Hyper CVAD B contains chemo drugs that Kurt's leukemia cells have never seen before. The hope is that these drugs will do the job and clean up this remaining bit of bad cells. If the blast cells are not decreased, we will add the drug Blinatumomab to the next two cycles. We have heard great things about this drug. It targets a specific antibody on the cancer cells and has gotten many people into a very strong remission with 0% minimal residual disease (MDR). We want to go into transplant with 0 blast cells to give Kurt the best shot at a cure! Kurt also still has another Hyper CVAD A/B cycle to go, plus chemo for conditioning prior to transplant, so more chances to kill the leukemia and keep it gone.

We are still targeting December/January for transplant. All four of Kurt's siblings completed the bloodwork to see if they are a match for him. Those results started coming back while we were home and unfortunately all four siblings are only a half match. When looking for a stem cell match, doctors are looking at HLA markers on the cells. A perfect match has 10/10 of the same markers. Kurt's siblings only had 5/10 markers matching. The more perfect the match, the less chance of his body rejecting the cells and there is a slightly lower risk of Graft vs. Host Disease (GVHD). Now, we begin the search through the national registry (Be The Match). They even sent Kurt a little informational packet earlier in the week. There are around 30 million donors in the registry and Dr. Ramlal seems really confident Kurt will find a match there. We are praying we find a perfect match as quickly as possible. 

Several people have asked how they can get tested to see if they are a match. The best way to get tested is to go through Be the Match. You can go online and request a testing kit through them. If you are between 18-45, the whole process is free. The kit is a simple mouth swab that you do at home and mail back. If your DNA seems to be a match for a patient needing a transplant, you would then have some additional bloodwork for HLA typing. If you are registered with Be the Match, then you are a candidate for Kurt and many others in need! Donation is usually very similar to donating plasma--not a surgical procedure. You can read more about donating here: Be The Match  

So, we returned to UK yesterday for the start of Hyper CVAD B. Kurt had some pre-meds and fluids to prep for chemo today. He also had a spinal chemo treatment yesterday. Because of the issue with the headache he had last cycle, they did add steroids to the spinal chemo. We hope this will prevent headaches and help lessen inflammation. I snapped the picture above just to document how strong he is! Kurt has always hated needles, but he has done so well with all of the pokes. The oncologist who did the lumbar puncture yesterday is a big STL Cardinals fan, so he and Kurt had fun talking about baseball. I think that was a pleasant distraction. Kurt made sure to wear the Cardinals hat his mom made him because he knew Dr. Krem would notice! 

This morning, Kurt started receiving chemo around 9:30am. He will have methotrexate over the next 24 hours via his PICC line. The next three days, he will get doses of Cytarabine and a couple of other drugs to prevent and lessen the side effects of the chemo drugs. Kurt has had methotrexate and cytarabine in the lumbar punctures, but he has never had them via his PICC line. We pray they will do the job of destroying the remaining 7% blast cells. 

As long as Kurt's body clears the methotrexate, we will be able to return home on Sunday! So far, he has tolerated each chemo drug we have encountered really well. We pray he will do the same with these drugs. Typical side effects are fatigue, nausea, and vomiting a couple of days after chemo. Kurt does have some neuropathy that has gotten a little worse from one of the other chemo drugs (vincristine), but we have been told it will go away after treatment. One of his worst days was actually the day we were discharged from the last cycle (10/8), when he had bone pain from the Neupogen injections to help boost his WBCs. He will have this drug or a similar one post-chemo this time, so we pray the bone pain will either not show up or will be as minimal as possible. Thankfully, it went away pretty quickly after the last injection. 

Thank you for reading this crazy-long update and for praying with us! If you would like more information about stem cell donation, feel free to message me. As always, information about our meal train, etc are located on the right side of this page. We could not do this without your support! We are so thankful for all the meals, the household items, goodies to keep the kids busy, cards, texts, and words of encouragement. Your prayers mean the most to us and fill us with such joy and hope! You are a blessing to us! 

-K and P