Day +1 through Day +16: A recap of Facebook Posts

Day +1 update

The headache is still with us, unfortunately. Kurt had a CT scan and we are thankful it was clear! Now, his team is trying to discern if the headache is from one of the medications he’s taking, the DMSO preservative the cells were frozen in, or just the body’s response to the transplant itself. They are trying a “migraine cocktail” now with some backup plans for later if it doesn’t help. Kurt has been very miserable with little sleep. Praying God will take this headache away and give him sweet rest.

Later (5/19/21) After trying several medications, Kurt’s team decided to try the migraine medication, Imitrex. Thankfully, it has brought his headache down from a “9” to a “3”! Praise God! Hopefully, we can stay on top of it and it won’t come back. Thank you for praying with us today. God’s peace was unmistakably felt. Kurt was even able to eat some dinner and take a shower! God is good!

Day +2 and into +3

Kurt's headache on Day +1 was finally resolved after a hot shower and the migraine medication Imitrex. By yesterday morning, the headache was gone completely! Praise God!

Kurt is having more GI symptoms, including some mucositis. Thankfully, he doesn't have any open lesions in his mouth right now, but his throat and mouth are very red and painful. Another aggravating symptom is thick saliva--making it harder to swallow and adding to the nausea. He's talking a lot less and we've been remembering some of the sign language we used when our kiddos were babies. To help with the mucositis, his team has given him a couple different mouth washes with some pain reliever/numbing agents. He's trying to drink more to thin the saliva. Eating has been difficult but he's making an incredible effort. So far cold apple sauce and Carnation Breakfast Essentials are the winners. The dietitian is making a protein rich milkshake for him later today. We are thankful for his team, including dietary!

Kurt also spiked a fever last night. He had been dealing with a low grade fever all day. The doctors ordered cultures and a chest x-ray. They also do stool and urine tests. We are so thankful that every test has come back negative--another huge praise! Kurt's on a stronger IV antibiotic now just to be safe. Fevers are common after transplant without indicating infection we are told.

Kurt slept well last night and goals for today include: eating and drinking more, along with walking more. He's been more awake this morning, but post-transplant fatigue is rough. His body has been through so much and just needs to rest too.

Thank you for continuing to pray along side us. Each day is a gift from God that we don't take for granted--even the hard ones. As another patient on the floor told us while we were walking, "Everyday is a good day, but some are better than others."

Day +4

Last night, we found out that one of the cultures taken on Thursday grew a type of "gram positive" bacteria. The team told us they will allow the culture to continue to grow, so they can identify the bacteria. They even do DNA testing on bacteria! Kurt began a stronger antibiotic called vancomycin last night. We believe this bacteria may be the source of his fevers. The team will continue to draw blood and watch the cultures until they are all coming back negative. Thankfully, this type of bacteria is very susceptible to antibiotics. It's very scary to hear the word "infection" when dealing with Leukemia, but his team has assured us almost everyone deals with similar infections post-transplant and they are well equipped to handle it.

Kurt was up more today. He even managed to play his ukulele for a few minutes and help me with a puzzle. Unfortunately, his mouth and throat are still extremely sore. His entire GI tract isn't at all normal. Eating was a challenge again today, but he tried his best! We have a couple different mouth washes he can use, a throat spray, and he even tried a pediatric dose of morphine. Some post-transplant patients end up utilizing a pain pump. We hope Kurt can avoid it, but it is nice know medications are here if he needs them. Even though pain meds help, it is very hard to deal with mouth pain effectively. Once his new cells engraft and start working, his GI tract should begin to heal rapidly (though taste and appetite are often effected for months after). His doctor told us that the cells know what areas of the body are damaged and in pain and will go to those areas first once they start working! Again, we are left in awe of how wonderfully God made us.

I helped Kurt cut his hair tonight and he trimmed his beard. His hair is already starting to fall out in response to the chemo and radiation last week. We look forward to it growing back again. Until then, he's cozy in the cute fleece St. Louis Cardinals hats his mom made him!

Please continue to pray Kurt will be able to eat, find pain relief and relief from GI issues, the bacteria will be completely eradicated by the antibiotic, and that his new cells will begin to engraft next week and work beautifully.

Thank you!

Day +5

Not much new to report today! While we can't wait for the mouth/throat pain and GI issues to be gone, we are thankful for an uneventful day. Kurt's pain level is pretty much the same. Meds do help dull the pain and he was able to drink a lot more. It's still a challenge. He's been up and about a decent amount too.

The culture hasn't grown anything--that's good news! They will continue to check for a couple of days to be sure. His temperature has been perfectly normal. Yay!

Kurt did need platelets before bed, but those go really fast thanks to the new catheter. We are so thankful for all the blood donors. If you can donate, please know it is very much needed and very much appreciated!

Pressing on...

Day +6

Kurt didn't get much sleep last night--tummy issues, so this morning we did some reevaluating and his team landed on another medication to try to help with GI issues and added a pain pump to his care. While he's on a lower dose of pain medication, the pump allows him to be in charge of how often he gets relief. I think we hit on a happy middle ground--he got a lot of pain relief today and wasn't drowsy/loopy from meds either. Win! Win! Kurt told me this evening his pain level went from 7 to a 2! It is still very hard to swallow but we are hopeful managing the pain better will allow him to start eating more.

His doctor also clarified that most patients don't engraft until around days +14 to +20. In our ALL group on FB, patients have talked about beginning to engraft from day +10 all the way up to day +25. We pray Kurt will be on the earlier side of things but adjusted our expectations accordingly. I'm still not sure where I saw the 7 -14 days, but we've had so much information thrown at us my brain is probably a little scrambled. We pray God will sustain Kurt this week, that he will be able to eat more, get continued relief, and, that by next week, we will start to see signs that the new cells are working.

Day +7

Holding steady on day +7! The pain pump has really brought a lot of relief and Kurt was able to eat more today. Thankfully, his mouth and throat don't seem to be getting worse at this point. We pray that things will just stabilize and then get better. His GI issues are still pretty prevalent, so that's still a challenge. It makes sleep hard when frequent trips to the bathroom are necessary.

We both had an afternoon nap today and went for a walk this evening. We also caught up on the latest "The Chosen" episode. This one was a bit of a cliff-hanger. The verse repeated in the episode is part of a larger passage of Psalm 139 that we have been praying. I loved when Jesus told Simeon the Zealot, "I didn't need you. I wanted you."

Pressing onward in faith.

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

Day +8

Not much new to report today! We are just trying to stay the course, get Kurt as much pain relief as possible, and find things he can tolerate to eat. Today's victory included a few bites of mashed potatoes! So far, most of his diet is liquid. He's trying to learn to like the Breeze and Boost type drinks.

Sleep is still a challenge with the GI issues, so we continue to pray for that as well. Kurt usually naps a fair bit throughout the day too and that helps make up for the deficit a bit.

Because the cultures haven't continued to grow, Kurt is on the last two days of IV antibiotics. After those finish, he'll go back to the regular prophylactic antibiotic Levaquin.

Thank you for praying and for your messages. They are encouraging and give us strength. We are praising God for protecting Kurt and giving him the strength to endure this. We pray that relief will soon be on the way. Come on little cells!

Day +10

The past few days have just been all about holding steady. A few positives that have happened: Kurt slept much better last night, his throat pain seems to have decreased, his GI symptoms seem a tad bit better, he finished up the stronger antibiotics and can return to the regular prophylactic, and he's been getting some more fluids down.

Kurt's Tacrolimus and Sirolimus levels were high yesterday, so Siro has been paused and Tacro lowered while those come down. One of the odd side effects of the Tacro being high is a burning sensation in the feet. Thankfully, a nice foot bath in cold water brings some lasting relief. Getting the immunosuppressant levels right is a balancing act!

Today, Kurt begins a prophylactic medication to prevent a reactivation of CMV (cytomegalovirus). This is just another step in the post-transplant process for patients who tested positive for CMV prior to transplant. Like Epstein Barr, CMV is something most people have been infected with and it lies dormant the majority of the time. However, the weakened immune system post transplant can open the door for a reactivation of the illness.

We continue to tweak pain meds to help Kurt eat. His pain is much less when he is just being still, but eating or talking are still a challenge. He does have a few open lesions in his mouth, but his throat is feeling and looking a bit better.

Would you please pray that we can manage Kurt's pain well and that he will be able to eat more? Ultimately, we pray that he will begin to engraft over the next week, so that his body can begin repairing this area. We continue to pray for protection against infection of every kind.

Thank you for all your support.

"Be joyful in hope, patient in affliction, and faithful in prayer." Romans 12:12

Day +11

After 12 days of all neutrophils, lymphocytes, monocytes, and WBCs being 0, we were thrilled to wake up to these labs today. Based on this, Kurt’s body is starting to engraft! Praise God! He needs to have three days in a row of his neutrophils at .5 or above to be considered engrafted. His numbers could teeter-totter for a few days, but we should start to see an overall rise over the next week.

What wonderful news at the end of a hard week! There’s only thankfulness! God is so merciful!

We pray these numbers will continue to rise, Kurt’s mouth and GI tract will heal, that he will continued to be protected from infection and that he will have the right amount of Graft vs Leukemia effect and no GVHD!

Day +12

Kurt's neutrophils continued to rise today to .62! The oncologist said that today is probably the first official day of engraftment. If the neutrophils stay above .5 for the next two days, he will be considered engrafted. We pray they will hold steady and continue to rise.

Kurt's mouth is still quite sore. He's still on a mostly liquid diet, but is drinking more. Mashed potatoes and beef broth have been a good meal and he's managed to eat some soggy Rice Krispies in almond milk. We continue to pray his entire GI tract will heal this week so he can eat more and reduce the pain meds.

Kurt is quite sleepy most of the time. His body is obviously exhausted from the whole process, but the pain meds make him a little sleepy too. Last night, he made it through two episodes of "I Love Lucy" and a shower without a nap!

Tomorrow, his Tacrolimus levels will be checked again and we are hopeful they have come down within range. The burning sensation in his feet has calmed down, so that's great.

We've been at UK 20 days today and are so thankful for their wonderful care. Of course, we are looking forward to going home. Every day brings us closer!

Please continue to pray that Kurt has a smooth engraftment process, that he is protected from infection, and that his body will accept these new cells perfectly. We pray they would kill off any remaining Leukemia cells to keep Kurt healthy and that they would not see his body as foreign.

Day +13

Happy Memorial Day!

Kurt’s neutrophils continue to rise! They are at 1.02 today! His mouth and GI symptoms seem to be very slowly starting to improve. His throat seems much better, but he still has some lesions in his mouth. He did manage to eat some soggy cereal this morning!

Eating, drink, and some good naps are ok the agenda. We are SO incredibly thankful.

Day +14

Kurt’s neutrophils are 1.24 today and he is considered officially engrafted!! He still has a long recovery ahead but a huge hurdle has been overcome! Praise God! Join us in offering Him praise with a thankful heart today!

Day +15 (Day 23 at UK)

Kurt’s neutrophils inched up a bit more to 1.27. His mouth and GI issues are continuing to heal. This morning he even ate a bowl of cereal! He looks and sounds so much better. It’s amazing the difference a week can make!

Tomorrow, Kurt’s Tacrolimus will be switched from an IV med to a pill form in preparation for going home. He’s still getting daily magnesium and potassium, as the Tacro depletes electrolytes. His IV fluids were reduced a bit more too. He hasn’t needed pain meds since Sunday/Monday. Nausea still strikes at times, but meds knock it out. So far, Kurt hasn’t needed a blood transfusion (pretty incredible), but he has needed platelets several times. Thankfully, he hasn’t needed any for several days.

The tentative plan is that he might get discharged early next week! We are looking forward to being home when it is safe. After discharge, Kurt will still have daily clinic appointments for several weeks.

We are so thankful for how well he is doing and for God’s many blessings and mercies. We continue to pray against infection and GVHD. We pray these new cells will thrive and the Leukemia will never return!

Day +16

The upward trend continues! Kurt's neutrophils were 1.76 today. He made it into the bottom of the normal range (1.6-6.1). His platelets also rose a bit on their own signifying that his red blood cells are also starting to recover. His hemoglobin is still pretty low at 7.1, but we have been told that it will recover last. Kurt's hemoglobin was 15 when he was admitted to start the transplant process, so he is certainly feeling the difference. It's pretty incredible that he hasn't need a blood transfusion so far. We'll see if his hemoglobin can hang on and start to rise, or if he'll end up with a transfusion in the next day or so. No matter what happens, that's a pretty amazing accomplishment. His doctor was impressed!

Nausea still continues to try to pop up throughout the day, but Kurt is eating more. He managed to eat some bites of biscuits and gravy this morning and just finished a bowl of cereal.

Tonight, he'll get to take his first oral dose of Tacrolimus.

Overall, the days are getting more boring which is exactly how we like it! We praise God for "boring" days.

The next big milestone will be on day +30 when they do bloodwork to check the % of donor cells vs. Kurt's cells. We pray that his cells will be 100% donor cells. This test will be repeated at day +60 and then Kurt will have his first post-transplant bone marrow biopsy around day +100.

Counting up one day at a time!