Category: Status Update

Tim got the best night of sleep he’s had in a while last night. He has also needed less pain medication today. However, he did start having some weird “pinching” sensations along his waist. They are going to keep an eye on that one but, at this point, they don’t really think it is anything to be too concerned with.

We are still getting in quite a bit of walking. He is very close to finishing his 3rd marathon!

PRAYER REQUESTS:

That pain continues to reduce. Cassie was talking to another patient’s family and it is not uncommon for one day to be good and the next to be terrible. We are grateful that the good seem to be outweighing the bad right now.

PRAISES:

We are praising God for a good night sleep (for both of us), and for less pain. Makes the day that much better!!

Tim was able to get a bit more sleep last night but he still had quite a bit of pain. Of course, having to get up about every 45 minutes because of the amount of fluids you are receiving does tend to cut into the sleep also.

The physical therapist came in today and adjusted some things with the recliner chair in his room and dug out a couple spots for him. That did seem to make a bit of a difference.

He was able to get rid of all IV meds around noon today so we were able to do most of our walking without dragging his friend along. I think that sometimes throws his body off trying to push that thing and not run into it or anyone else with it!

Numbers are still going down so we are not at the lowest point yet. He still seems to feel fairly good. The nausea comes and goes. At lunch he started eating his meal and said it was good but all of a sudden he just felt like he couldn’t eat any more of it. Some meals he can and some meals he can’t.

PRAYER REQUESTS:

For an even better night of sleep tonight now that the IV fluids and chemo are done. We are also hoping that the pains he has been having will be reduced with those finished.

PRAISES:

That physical therapy was able to address some of his issues so quickly.

That he was able to get a bit more rest than the night before.

Tim’s overnight was not so great! He slept fairly well from 10-1 but then around 1:00 a.m. woke up with his shoulders and biceps hurting him terribly. They gave him several different pain medicines and he still had trouble. He did not sleep again the rest of the night. When the PA came in, she said it was caused by one of two things. It was either the donor cells causing issues in his body or it was issues from the chemo. They did finally get the pain to subside but about 5:00 p.m. it started to come back. They were going to give him some more pain meds and a pain patch for overnight tonight.

This is how the journey can go. One day he is doing well and the next some new problem creeps in. Lots of bumps ahead!

PRAYER REQUESTS:

That this new pain will go away quickly and not be a big issue and that he can get some decent sleep tonight.

PRAISES:

Tim was able to see a couple siblings today and have a good visit with them.

It was another uneventful day! We were able to walk some and enjoy a movie together. We got to speak to a few of the kids and see some of the activities they were doing. Just a nice relaxed day.

Tim did start the anti-rejection/chemo medicine today. Along with that, they have to give him LOTS and LOTS of fluids. This medicine is one that can damage the bladder so they have to do all they can to flush it out of his system. Those fluids should hit his body hard about bedtime, so he is looking forward to spending quite of bit of his overnight in the restroom! 😉

PRAYER REQUESTS:

That Tim does not have any damage to his bladder from the medication he is on. He does already have some minor issues with his bladder so we are praying that this does not cause any more issues,

PRAISES:

Tim was able to finish his second marathon today. We are thankful that he has felt well enough to continue to do his walking. He has been a motivation to many on the floor. Take a quick look at the IV set up he has going also. It is a work of art!!

Today was a very uneventful day. When I first showed up, Tim said he had been cranky but, within a few minutes, I noticed he was humming and singing, so apparently not too cranky! 🙂

He has felt fairly good all day. Less tired and not quite as nauseous. Tomorrow they will start a new chemo though. It is actually a medicine similar to anti rejection medication but it is a chemo drug. It will, very likely, increase his tiredness and make him more nauseous again. He only needs to be on it for 2 days though, so we are hoping that the effects will be short-lived.

The big game is tomorrow but we will not be able to see it from our position in the hospital. It’s good that Cassie walks to the hospital each day because we are told that the traffic on game days is ridiculous!

PRAYER REQUESTS:

Tim is now at a point where his immune system is almost completely gone and we are quickly approaching the “worst days”. We are still praying that they will not be too bad. Since everyone is different, you just never know.

Tim is feeling like a mouth sore is beginning. Please pray that it will not be too bad and that it will go away as quickly as possible. Usually, it is there until his counts start to recover and that is likely still a week or two away.

PRAISES:

We are thankful for such an uneventful day. It was nice to have a day where things went fairly well.

Today was a pretty good day! Despite the late (and somewhat sleep deprived) night last night, Tim felt better today. He did not have quite as much nausea and didn’t feel quite as tired. His blood numbers are dropping though, so that can change at the drop of a hat. In fact, he is starting to feel a mouth sore coming on tonight.

The physical therapy ladies were back today and were able to ‘diagnose’ some things that Tim was doing (the way he walked) that was leading to some of his back and hip pain. They gave him some exercises to do and ‘corrected’ some of the things he does when he walks. We feel like this might be a good starting point towards some of his back, hip, and shoulder/neck issues being helped.

PRAYER REQUESTS:

That we both get a good night’s sleep tonight. The transplant finished around midnight and then they needed to do vitals on Tim every hour for the next four hours. With that and shift change at 6:00 a.m., it was a rather short night!

Over the next several days, Tim’s numbers will bottom out. They fully anticipate that he will start to run fevers and feel like he has a really bad case of flu. The mouth sores are another issue that will occur. Please pray that he will be able to tolerate the upcoming medical challenges.

PRAISES:

That everything went smoothly with the transplant.

That the physical therapists were able to see some ways Tim could make changes that will very likely help with some of his back, hip, neck and shoulder issues.

Today has been a strange day! We spent most of it waiting. We were watching Flight Aware for when the courier would land in Cedar Rapids with the marrow cells. The plane landed pretty much on time. Then we had to wait for the cells to arrive at the hospital. Then we had to wait for them to run a few tests on the cells. Then we had to wait for them to get it all set up. It was a day of waiting but finally, around 8:00 p.m. we got the cells hung and started the transplant. As I write this, we are still waiting for the first bag to finish (9:50ish)and then we have one more bag to go. Plus they need to do vitals every hour for at least 4 hours once the transplant finishes. It’s going to be a LONG night!

They didn’t expect any type of reactions and we haven’t had any, which is a good thing. Over the next 3-5 days, they expect him to feel fairly normal and then he will start to run fevers and feel like he has a bad case of the flu. We hope that is the extent of the symptoms but, there could be other things.

PRAYER REQUESTS:

Today is a beginning for Tim (and the rest of our family). Please pray that this transplant leads to a cure for Tim.

PRAISES:

That the transplant is going well with no reactions or issues. We are thankful to the person that donated the cells to Tim. We pray that we will be able to meet them one day.

While yesterday was a great day with Tim finishing the marathon, today was a bit of a ‘return to reality’ day. The nausea is getting worse and Tim is starting to worry more and more about the “rough” days still to come. He is losing weight and struggling to eat.

Tomorrow is transplant day and while that is a big day, it is just the beginning of a new journey. Day 3 following the transplant, Tim will be given medication to help with Graft vs Host Disease (GVHD). That medicine is more chemo. Chemo that can be rough on the body. Some do sail right through it. Some have a few rough days and then are back up again. Some have a long rough patch. That last one is what Tim is the most apprehensive of!

I have been following all kinds of different leukemia journeys through Facebook and one I follow said it best:

Anxiety didn’t always look the way I thought it would.

It wasn’t always panic or tears or being unable to function.

Sometimes it looked like going to work. Making dinner. Laughing. Taking pictures. Living a completely ordinary day.

While somewhere in the background of my brain, a thousand possibilities were quietly running.

I could understand the medicine. I could know what the doctors were watching. I could know that worrying wouldn’t change the next lab result.

None of that made the fear disappear.

Maybe that’s one of the strangest parts of this journey—learning that you can be okay in a moment and still be scared of what might come next.

So, that is where we are at today. Pleased that Tim had the stamina to finish a marathon (and keep walking, even at a much slower pace), but scared of what the tomorrows might bring. And, honestly, that is okay. We know God is with us, because he has shown up in so many ways but, even having Jesus in the boat didn’t stop the disciples from being fearful.

PRAYER REQUESTS:

Please pray that the side effects are kept to a minimum and that Tim is able to bear those that do come along. Along with that, being tired means more naps. More naps means more time in his bed/recliner. More time in the bed/recliner means more body aches, especially his back and neck. The physical therapists on this floor have been AMAZING but he will need to be seeing them more and more often!

Please pray for mental health as well. I know what I go through in a day here and can’t even begin to imagine what Tim is going through. Depression on this floor is a real thing.

We are told that the courier (a 60 year old man) who is bringing Tim’s donor marrow is scheduled to fly in tomorrow around 3:00 p.m. and then Tim is scheduled for the transplant about 5:00. We all know how commercial airlines can be, so please pray for his safety in traveling and that there are no delays, especially weather!

PRAISES:

For the specialists, like physical therapy, who help make one issue much better. The gals that have been coming by have been so wonderful! The one that has been working on Tim the most is just a student but she will have a GREAT career!!

For all the doctors, nurses, techs, and other staff that have been so kind and helpful. Tim especially misses some of his favorite nurses from Mary Greeley, but we have come to like many of the ones up here also!

Well, he did it! He finished the marathon this morning! Many nurses have commented that they think that is the fastest anyone has been able to complete a marathon after being admitted. I will post the video to my Facebook page but there is a picture of him with his t-shirt below.

Final day of chemo today. Between walks he has been sleeping. Not a bad thing though. A little nauseous but, typically, eating a little (even though he is NOT hungry) does seem to help that. He was also able to get rid of the IV pole for the next couple days! That is amazingly freeing!!

PRAYER REQUESTS:

The news is that next week could be pretty rough. We don’t really know what exactly that means but we are bracing for impact! Prayers that he is able to tolerate whatever comes his way!

PRAISES:

That Tim was able to finish the marathon today. It was an encouragement to many that he felt well enough to actually finish that before next week when things are expected to get a little worse.

There was quite a bit more activity on the floor today. More people out of their rooms walking around like us. It was interesting to see more people out and about instead of staying in their room.

Tim’s fatigue continues. It is something that he will be dealing with for quite a while (months) but we are trying to stay as active as possible between bouts of sleepiness. He is sleeping well at night despite all the naps during the day, so that is a good thing!

He was able to go without his IV pole for several hours this afternoon and we took advantage of being free from it. We walked the halls and he took a shower unencumbered by the pole. It’s amazing how much better it makes you feel to be free from it for a bit.

When we first started this journey, Tim had been able to control his diabetes with diet and exercise. With all the steroids and other medications he was being given, he was having to take insulin several times a day. They have not needed to use steroids here and he has not had to have insulin since being admitted. They even decided today that he no longer needs to be poked and tested before every meal. They will monitor his blood sugar with his blood tests each morning.

We have had several people inquire, so we have added both Tim and Cassie’s addresses to the “Ways to Help” tab on this website. We welcome your notes of encouragement!!

PRAYER REQUESTS:

Tim is starting to lose his appetite, so please pray that he is able to continue to eat even when he does not feel like it.

PRAISES:

That Tim is still able to get some good rest over night despite all the day naps!

That he was able to spend most of the afternoon not tied to his IV pole!

Praises for no insulin. Tim did not want to have to be on that long term and we are thankful that he is doing well enough to not need it right now!