Tim’s Leukemia Journey

Tim is home! He was discharged from the hospital yesterday. He is still tired, doesn’t have much of an appetite and weak, but he is happier at home. He will have many clinic appointments each week, so we will still have to go to the clinic and battle all the traffic and construction but he can rest and recover at home. Thanks once again for the cards, meals, calls, texts and visits. This is always appreciated. 🧡🎗️

Tim has finished his transplant. He is resting. They say that after day 5 things could get rough. There are many things that could happen. The transplanted cells could attack his body, he could spike high fevers, he could get very nauseous, etc. Every person is different. He will be monitored closely and we will wait and see. 🙏

Tomorrow will mark week one of 4/5 weeks for Tim. He has had three days of chemotherapy and four days of radiation two times a day. Other than a bit nauseous and losing his hair again, he is doing ok. Tomorrow will be his transplant and they say next week will be rough. Visitors are welcome if not sick.

Tomorrow it all begins. Tim will be in the hospital for about 5 weeks. He will get chemotherapy and then four days of radiation, 2 times a day. He is scheduled for his transplant on the 24th. Visitors are welcome as long as they are not sick, we just ask you to mask up and sanitize your hands when arriving to his room. DM me for his room number if interested. This is encouraged to keep his spirits up.

We are so grateful to those who have already reached out to check in, bring meals, transport Liam, send cards, prayed, visited and helped out around the house/yard. We definitely appreciated it!

I will do my best to send updates. Thank you.

Tim has had a break for the month of June. He has gained some weight back and has been feeling better overall with more energy. Today we ended up going to the ER. Liam was diagnosed with strep yesterday. Tim woke up with a fever today and felt lousy. After getting to the ER, I started to feel worse. Tim was checked for strep, covid and pneumonia, all negative. I was checked for covid, strep and had a chest X-ray; then diagnosed with bronchitis. Tim was later transferred to SLU to figure out what is wrong. He is back at the hospital and is due to go back in on the 17th for initial work up and then his transplant. It’s going to be a long, tough road.

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! 🙏