Tim’s Leukemia Journey

Update: sorry this should have been sent out sooner. Tim’s treatment round 2b was tough. He was suppose to be in for 4 days and that turned into 16 days. Those 16 days were rough! He had severe abdominal pain that ended up being pancreatitis, he ran a high fever of 102+ that came and went for a few days. He had high blood pressure for several days and then things got worse. They thought he had a stroke but thankfully it wasn’t. They said it was PRES syndrome which resembles a stroke but is reversible. He is back home as of Sunday and doing ok. He is weak and his memory isn’t quite back to normal but he has bounced back quickly. Lots of tests today so hopefully we get some good news.

Thanks to everyone that came to visit, called, sent a text, said prayers and/or helped out. It is greatly appreciated.

Well, a week later and Tim is still in the hospital. He has completed his treatment for this round. But he continues to have abdominal pain and no appetite. His kidney levels are not where they need to be and two days this week, he ran a high fever of 102+. They are hoping by Monday he will be well enough to go home. He has needed a few blood transfusions and is getting some antibiotics. This has been a very tough week for him.

Last Friday started Tim’s fourth round of chemo (2b). He has had a rough go this time. His kidney function isn’t where it needs to be. He is experiencing a lot of abdominal pain and he had a biopsy of his pancreas on Tuesday. Results will take up to five days to get. He still is in a fair amount of pain, worsens when he eats so he doesn’t want to do that which isn’t great right now since he has already lost so much weight. They are also concerned about his esophagus, noticing some irregularities during his biopsy. They will monitor that as time goes. They are expecting him to be in the hospital for a few more days. Continued prayers welcomed.

Tim's hospital stay has concluded with his release today, though he is presently not feeling well, which typically follows treatments of this nature. We are counting on the benefits of home rest to rectify his condition. Looking ahead, clinic appointments and round 2B in mid-May. Based on past experiences, the B cycle might yield better results for him. Moreover, a previously detected pancreatic cyst is slated for a biopsy in July, and we hope for benign results to guide the next steps in his care.

Yesterday started Round 2A, his third stay at the hospital. He had a biopsy done on Wednesday and the first set of results show new white blood cells being produced clean! Good news! We were also told that he has 4 bone marrow matches as of right now, they are still awaiting to hear from others. Also good news. He had another lumbar puncture with chemo yesterday and has to have another on Tuesday or Wednesday. As soon as he is in remission, they will start discussing his bone marrow transplant which will be at least 6 months of long term care. Continued prayers are appreciated! 🙏

We met with the bone marrow transplant team yesterday afternoon. He has 2-10/10 matched candidates to donate! As soon as he is in remission, they will proceed with the transplant. This will be a very difficult recovery. There are many complications that could happen so he has to stay in the hospital for at least 3 weeks to be monitored closely. When he is in the clear, he will be able to go home and return to the clinic many days each week for treatments and monitoring. Remission may occur in a month or several months. They will complete their first biopsy next week and continue to complete several lumbar punctures. Please continue to pray! 🙏

Friday started round 2 (cycle 1B) of his treatment. It has been a roller coaster for sure. He started weak, felt better and is now feeling miserable. He was discharged yesterday afternoon, went straight to the clinic for meds not covered in the hospital then went home and went to bed. He is very weak and has no appetite. We are back at the hospital this morning for a MRI and have a consultation appointment next week with several clinic appointments. Please continue to send prayers! 🙏

On Friday, followed by a busy week, Tim was admitted for the second part of round 1 of chemotherapy. Other than being tired and weak, he has been a trooper. Last night was a rough night and today the meds are kicking his butt. Continued prayers would be appreciated. He is getting another lumbar puncture with a chemo injection this morning. If his numbers look good and he feels well enough, he could possibly be back home tomorrow or Wednesday. 🙏

Timing is not great but we have to be aggressive and kick this!! Tim will be in the hospital over Easter, getting round 2 for 5-6 days starting Friday. I will be with him to help out and cheer him on. Requesting prayers that he gets through this round without getting sick. He is down in weight and a bit weaker than he was the first round. 🙏
We have a busy week, trying to keep those platelets up, he had his second lumbar puncture this morning and gets a port placement tomorrow morning.

On Tuesday, Tim completed his first round, six days in the hospital , getting 5 days of intense Chemotherapy. He was scheduled to be discharged but with low platelets and nose bleeds, they decided it was best to keep him. With more transfusions, by Wednesday morning his counts were high enough so they finally were able to do his lumbar puncture. We have not gotten those results back yet. We were then discharged with an appointment at the clinic on Thursday. At Thursdays appointment, Tim was feeling horrible, lots of stomach pain. He was running a fever as well so they completed a CT scan after his 4 hour infusion of a medicine the insurance wouldn’t cover while he was in the hospital. While driving home, we get a call that he has pancreatitis and needs to be readmitted to the hospital as soon as a bed opens. By 5:00, we were going back to the hospital. With meds and IV, Tim is feeling much better but very weak and is back home. We have to go to the clinic three days this week for more tests and treatments. He will start round 2 in early April.