Category: Status Update

Last night we drove to Iowa City so we could be at the clinic bright and early for Tim’s 7:20 labs this morning. The doctor was quite pleased with Tim’s progress. His magnesium level was a little low so he also had to have a magnesium infusion. They did prescribe some magnesium pills so, hopefully, his level will be better on Friday when we have to go again. Those 4 hour trips are getting a bit long!

Overnight Sunday night, Tim thought a rash might be developing on his chest and upper back. He was correct. Turns out, the itching AND the rash are both good things. The doctor today said she believes they are related to engraftment. That, hopefully, means the donor cells are starting to settle and produce new cells. They did give him some prednisone to help with the itching but felt like it was a good sign!

Nighttime sleeping still seems to be difficult. He did get a good nap during his infusion today though.

He will have PT twice this week (someone comes to our house so he doesn’t have to go out among people). For the most part his back and shoulders are getting better but still occasionally has some aches and zings.

PRAYER REQUESTS:

That things continue to go well.

That the itches will decrease (and go away) as soon as possible.

Tim does have some issues with his nose running. It seems to be especially bad when he is wearing his mask. Prayers for that to get better since he has to wear his mask to walk outside and that is no fun!

PRAISES:

That Tim’s body seems to be receiving the transplant well!

That we have had safe travel back and forth to Iowa City.

Yesterday was just busy enough that we took a day off from reporting. We set up Tim’s medicine schedule (there are a bunch and many are new), got suitcases unloaded and put away, and Cassie went and got a few groceries.

Tim is able to take decent naps but is still struggling with his overnight sleep. Some of it is the pain (which seems to be worse at night) and some of it is the itching. His legs and sometimes his arms start to itch terribly. There is no rash, which is good, but the itching keeps him up. This is quite normal but still annoying. Today the Dr sent in a new prescription for him and we are hopeful it will help.

This is the second day home and Tim is struggling with not being able to do the things he wants to. The weather has not been real cooperative for walking either. Tomorrow sounds like it might work better. We were able to borrow a stationary bike from some friends so he will have that on days that he is not able to walk outdoors.

We will continue to post updates, but they will not be as frequent now that we are back home. We will be updating at least once a week as we see the doctor. Our next visit to Iowa City will be early Monday morning.

PRAYER REQUESTS:

Again, for Tim’s mental health. He is struggling with the things he can’t do and also with not being able to see his grandkids. He has too much time to think about it.

For the most part, the odd pains are controlled. Night does seem to be the worst, so prayers that we can get his meds for that and the itches to work well enough for him to get a decent night’s sleep.

PRAISES:

We are very thankful for all who reach out, whether it is a card, comments on these posts, texts, Facebook notes, or calls. The words of encouragement give Tim much to give praise for.

We are also very thankful for our neighbor that has been mowing our yard this whole time. It is a blessing to have such good neighbors!

WE ARE HOME 8 DAYS EARLY!!! Packing went well and we were able to leave Iowa City around 11:00 today.

Tim’s hair chose today to decide to fall out! 🤣He decided to shave it before we left the hospital so it wasn’t falling out all over his car and our clothes. We thought it was great timing! Since he already wears his hair pretty short, this is no big deal for him.

Tim’s first order of business at home was to take a good nap in his favorite chair. I could tell he was happy to be back in his chair!

PRAYER REQUESTS:

One of the things that is possible following transplant is Graft vs Host Disease (GVHD). This shows up differently in different people. So far, Tim has not had any issues. We would ask for prayers that continues.

Please pray for emotional well-being during this next 100 days. Tim is not supposed to be around large crowds like church or even things like family gatherings. He is also not able to do any yard work or much of anything outside. That will be very difficult for him!

PRAISES:

A lot of Tim’s pains are better. They are not completely gone yet but they are getting much better. We are hopeful that things continue to improve, especially now that he is back in his own chair.

BIG NEWS!! They are planning to release Tim tomorrow! His tiredness of yesterday equaled a HUGE jump in his blood numbers this morning. One of the numbers they watch jumped 7 times over yesterday’s number and another jumped 13 times the number from yesterday! It is very unusual for him to be released this early but he is doing so well and, because hospitals are full of sick people, they are ready to let him go. This is over a week earlier than they originally thought!

Our other big news for today is that he finished his 4th marathon. Everyone was really pleased to see that.

Now, while he will be coming home, he will be, as he puts it, “under house arrest” for a while. He can go for walks outside (with his mask) but, for the most part, he is not able to go anywhere, especially anywhere with a crowd!

We will also be coming back to Iowa City for testing on a regular basis (like every 5-7 days). Cassie will need to stay with him, basically, 24/7 for a while also.

PRAYER REQUESTS:

As good as this news is, it is also scary. We will not have nurses right outside the door that we can consult. This lays a bit of the burden on Cassie. Please pray that he continues to recover well and that we are able to fall into a good routine at home that works for both of us!

This also means that Cassie has a lot to do to be ready to go home tomorrow. Please pray that she is able to be as time efficient as possible over the next 24 hours to get everything ready for us to leave.

PRAISES:

Obviously, we are thrilled that God has allowed Tim’s body to heal as quickly as it has. We give him all the glory and honor!!

Tim figured up the miles he has walked today and figured he has walked 100+ miles during this stay! That is quite a lot of miles.

Tiredness hit a new level today, which is VERY normal due to the cell regeneration currently going on in his body. He will contend with this for several months.

Today his blood numbers showed a big uptick. If they continue like this, there is a chance he will be released from the hospital by the end of the week. While that sounds exciting, it is also rather scary. To not have the nurses and doctors right there to ask questions of is rather daunting. There will be lots of things we will need to do at home that we don’t have to do right now. For instance, we will have to take his temperature at least twice a day. He will have a daily regimen of medications that will need to be taken and written down so we know when he took them and when he should/could take them again. It is a lot and that is a bit scary!

PRAYER REQUESTS:

The pain is starting to decrease but has not gone away. Please join us in praying that as his numbers increase, the pain will continue to decrease.

That things continue to go well. We are pleased that his numbers are looking good and that things seem to be going well. However, you are always waiting for the other shoe to drop.

PRAISES:

That Tim is doing well enough for them to consider releasing him early! We are so thankful for all the prayers you have been praying for him to do well. They are working!

Today was very similar to yesterday. Nothing new to report. Same pains, numbers stayed about the same. Tim slept some and walked some. However, we are one day closer to him being able to come home!

PRAYER REQUESTS:

For the donor cells to do their job and start growing and fighting.

Please continue to pray that his pain will lessen and that the medications they are giving to help it will work well.

PRAISES:

Overall, Tim is doing well. The pain is fairly managed with the medication (except overnight usually), he has not had some of the terrible side effects we’ve heard about, and that he is able to be as active as he has been. Those are all extremely good things on this floor!

Tim had a decent day today but is still struggling with pain. He has a very hard time feeling comfortable anywhere. The physical therapist told us about a massaging pillow that she thought would work well. We got that today so he has been using it some. It does seem to help while he is sitting.

PRAYER REQUESTS:

That the pain will be manageable. Along with that, that it will actually go away as his numbers start to rebound.

PRAISES:

Tim’s diabetes has been controlled the whole time he has been in Iowa City. He has not had to have any insulin or other diabetes medicine since coming in. That is big as he really hoped to not have to be on insulin long term!

Tim needed platelets today so that is how his day started. When he gets to that point, his energy levels plummet also. He was very tired and unmotivated today. It is hard on his body to just sit but that is all his body feels capable of!

He feels like another mouth sore might be trying to start. We will keep doing all the mouth care routines in the hopes of heading it off. He has been pretty lucky with them so far.

The odd pains are still there. He had an okay night of sleep but not great. It was medically enhanced but, sometimes you just have to do what you can!

PRAYER REQUESTS:

Not having the energy to walk and also being unable to sit for long periods of time leads to strange days. Today he has just been in a funk.

PRAISES:

His platelet numbers came up nicely after his transfusion. They will likely be back down again tomorrow but as long as they keep trying to rebound, that is what we are looking for.

Tim had another not great night. His pain seems to ramp up at night. Not sure if the mattress is contributing but it definitely isn’t helping! They are going to try a few things differently tonight. The doctor thinks it might be related to his numbers and that when he starts to rebound, the pains will lessen and, hopefully, stop.

He seems to be more tired today. Partially due to his lack of sleep last night and partially due to his numbers. That is one of the big things he will fight for quite some time.

These rounds of chemo are quite a bit different than what he has experienced in the past. They are no where close to what he experienced during his initial round.

PRAYER REQUESTS:

Tim’s number one prayer request is sleep. He has taken a couple naps already today but still feels very tired. Please pray for a good, resting sleep.

Pain would be the next thing. Prayers that he is able to find ways to reduce the pain he is having. We are hopeful that the things they will try tonight will help him to sleep all night and reduce the pain.

PRAISES:

He is very thankful that he has not had to be attached to an IV pole for most of this stay. It is so much easier to do everything without dragging his friend along!

Tim is having more of the weird pinching sensations along with some other strange pains. In many of the groups that Cassie is in, others talk about strange things that happened to them and how it improved as their numbers improved and the donor cells started to grow more. That gives me (Cassie) a good outlook but Tim is more concerned that there is more to them.

His counts are still going down but have not completely bottomed out quite yet. We expect them to bottom out in the next couple days. At that time, it is likely he will need blood products.

Tim was able to finish his 3rd marathon today. All the nurses and other workers on the floor are always so celebratory with us. It is very heartwarming for them to be so encouraging!

PRAYER REQUESTS:

That the strange sensations/pains Tim is having will end up being nothing abnormal.

That as his numbers bottom out and start to rebuild, his body reacts as well as possible to the changes.

PRAISES:

We mentioned a couple days ago that he was starting to feel a mouth sore come on. It never really did develop and he doesn’t feel any others. That is a huge praise as those tend to be one of the things that bother him most.

Tim still doesn’t have much of an appetite but the nausea isn’t really bothering him anymore either. He eats even when he is not hungry (as he is encouraged to) and has maintained his weight pretty well.