I wanted to hop on and give everyone an update on Kurt's progress so far. He is on day #16 (out of 29) of the induction phase. Yesterday (Day #15) was a chemo day. He received two chemo drugs through his PICC line and restarted steroids for another 7 day period. His clotting factors were low again, so he received two bags of "Cryo," which is basically the individual clotting factors pulled out from the plasma. It's pretty amazing how they can separate blood! The gold liquid you see in the IV bag above is the Cryo. This morning, his hemoglobin was also low, so he is currently getting some blood as well. Transfusions are pretty routine with Leukemia treatment, as the body is unable to make new blood cells.
Earlier in the week, we had noticed that Kurt's heart rate was higher and his blood pressure lower. We learned that his sodium was low. The doctors were able to alter the sodium levels in his fluids and both the heart rate and blood pressure improved. Fluids in the body need to bind with sodium to be retained and because his sodium was low, he was essentially still dehydrated while receiving all those fluids! We are thankful it seems to have been an easy fix.
Kurt has been feeling well this week. We have found that frequent snacks helped to maintain his glucose levels (though they will go up with steroids this week) and nausea. He hasn't been nauseous since the new snack regimen. He is eating really well and, besides some fatigue. is doing great! This is such a blessing to us. He lost a little weight but the doctor said this morning that weight loss could have been from the dehydration. He was back to his baseline weight today!! Our prayers are being answered daily. Chemo does have a cumulative effect, so we keep praying that he will continue to tolerate things very well.
Hospital life isn't very entertaining, but we have enjoyed movies, books, and just being together. We love getting updates from the kids. They have started making "Movies" for us using Hazel's ipod. We've enjoyed watching "Mighty Max" defeat the "Pantser" (Hazel as the villain) along with Police Woman Mabelle. Max is finally mastering riding his bike with training wheels (he hated it for the longest time....😜) and the girls taught him how to play Mario Kart on the Nintendo Switch. He's pretty proud of himself and gets embarrassed when he tells us he won a race. He covers his eyes and I can see his dimples pop out! The girls have been enjoying reading at home. Hazel loves to call and talk over Harry Potter with me, which I love. We will certainly be more than ready to be home with them.
We did get to talk to the discharge nurse this week about what things will look like when Kurt comes home. Lots of cleaning, hand washing, nurse visits and clinic appointments to come! Some chemo will require Kurt to be admitted for 3-5 days, but those admissions will be mapped out for us and we will have time to prepare. It was so refreshing to talk about getting out of here! I get to learn how to flush Kurt's PICC line, which sounds fun to me and probably a little scary to him!
Kurt's treatment plan is a three year plan. It seems daunting to think about three years of this, but we will take one day at a time and we are thankful for each one! Kurt is in the first phase of treatment "induction" now. The goal of induction is remission. Without remission, induction is repeated--we are really praying for remission the first time. After induction, we move to either the trial drug phase (if he is selected--we will know this after the bone marrow biopsy at the end of induction) or to Consolidation Therapy. Consolidation therapy involves more chemo treatments over a 56 day period. Consolidation is followed by Interim Maintenance Therapy for 49 days, Delayed Intensification Therapy for 50 days, and then Maintenance Therapy for the remainder of those three years. The intensity of treatments will decrease over time, but as long as Kurt is on some type of chemo, his immune system will be impacted. This will grow less over time, but is a huge concern to us as the world deals with COVID and we approach flu season. Even the slightest cold could be very difficult for him to handle--especially right now.
Several people have asked us about the need for a transplant, but we really don't know if he will need one at this point. Several factors go into transplant decisions (genetic factors/chromosome mutations and translocations, response to chemo, remission/relapse). So far, Kurt doesn't have any chromosome mutations, but we do still have some DNA testing pending. If he does get a transplant, that will alter the course of treatment. It's nice to have a "road map" forward but we know that any illness, reaction to drugs, relapse....could mean a deviation from the path. Leukemia can be a beast because things can really turn on a dime quickly. Jesus is really teaching us to live with thankful hearts in each moment.
We appreciate all of your prayers and encouragement. Please continue to pray for protection from infection or complications, no side effects from chemo drugs, for chemo to work perfectly, and for Kurt to be in remission and stay there!
With Love,
Priscilla
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