Category: Status Update

Since we found out about the transplant, life has been hectic. There are lots of appointments to try and fit in before we go, lots of chores to accomplish, lots of lists to make and then cross off, and lots of family time to sneak in.

Tim has been seen by a pain clinic, an orthopedic surgeon, and a chiropractor for his back. He has had X-rays, an MRI, decompression therapy and will have, essentially, a cortisone shot on Friday. Currently his back is still sore, although his neck is doing it’s best to make him forget about the back pain, and he is still popping pain pills like tic tacs. We are hopeful that the shot on Friday will do the trick.

There have been lots of phone calls with all kinds of doctors’ offices, financial coordinators, insurance people and work people. Among the phone calls, we did find out that Cassie will be able to stay at Hope Lodge in Iowa City. It is, basically, a Ronald McDonald House for cancer patients and their caregivers. This is a HUGE blessing as it will be FREE for her to stay there.

Many of the details of Tim’s insurance, long term disability, and social security disability are starting to fall into place which is also a huge relief.

PRAYER REQUESTS:

Tim is pretty frustrated by the back/neck pain. Please pray that the cortisone shot will help him feel much better. The processes he will have to go through for the transplant will be hard enough. He doesn’t need this pain going on at the same time.

Please pray for us as we work on the things that need done before we go. Lots of little things that you don’t even think about. It’s good they send you all kinds of information to remind you to think about them!

Cassie will be attempting to work remotely during the time we are in Iowa City. Her job is not one that is easy to do remotely, so please pray that it will go as smoothly as possible. She will be doing a trial run before we go to see what kinks need to be worked out.

PRAISES:

We are so thankful that Cassie will be able to stay in Iowa City for free and for some of the assistance we are able to take advantage of from the University of Iowa Hospitals.

God is good, all the time…

So we received the call that we wanted but didn’t get the answer we hoped for. Tim is scheduled for a bone marrow transplant in Iowa City. He will be admitted to the hospital on September 24th and will receive a transplant on September 30th. He will be inpatient for approximately 6 weeks.

We still have many questions and LOTS of logistics to work out between now and then. We will spend the next couple weeks making all kinds of lists and trying to cross everything off it before we leave!

PRAYER REQUESTS:

Obviously, we covet your prayers for our health – physically, mentally, and spiritually. We will have some long days between now and then!

Tim’s back is still bothering him. He was able to have an MRI and nothing seems to be seriously wrong. Seems to mostly be a degenerative thing. Since he has previously had 2 back surgeries, this is somewhat expected. We are hoping he will be able to get a cortisone shot before we head to Iowa City, so if you could join us in praying for that to work out, we would appreciate it.

Tim wants to be as physically prepared for the transplant as possible. Please join us in praying for this.

PRAISES:

We finally have answers. Even if they weren’t what we were hoping for, we are ready to face what we need to in order to make Tim as healthy as possible.

…All the time, God is good!!

Tim’s back is not much better. We spent Thursday in the ER. They gave him a pretty high dose of pain medication and it didn’t really touch it. So, they gave him some muscle relaxer and an anti inflammatory. Neither of those really did much either. He cannot find a comfortable position, whether lying or sitting, to escape the pain. It is also hard to move around.

We head to Iowa City on Tuesday for blood work and a biopsy. There is not a scheduled Dr visit, just the tests. It will then be 7-10 days for the results to come back and a treatment plan to be put into place.

PRAYER REQUESTS:

Please continue to pray for his back and that he is able to find some relief somehow. We are at a loss as to who to even see next. He has an appointment with a pain clinic but that is not until September 1st. That is a very long time to wait!

The biopsy on Tuesday could easily add to the pain Tim is already feeling in his back. Prayers that he will tolerate that well would be very appreciated.

With everything that is going on, Tim is rather discouraged.

PRAISES:

We don’t want to leave with all the bad that is above so tonight we say “Thank you!” to all of our prayer warriors. We know that God is in control and that everything that is happening will bring glory to Him!

Just hopping on for a very quick request. Tim’s mouth sores are gone but they have been replaced by a back that is so sore, he can hardly move. We have talked to his doctor and he saw the chiropractor yesterday and will again today. Please pray that the pain eases. He has not slept well for several days and is just feeling quite lousy. Thanks all!!

An update from Tim: I had a tough week due to very low energy and mouth sores. It was very hard to eat and talk. I also needed to have my PICC line removed. It was not infected, but it didn’t look good either. Despite all that, we did have a few good things: celebrated a coming baby with some dear friends, made good progress on a project with the help of a very good friend, enjoyed having 5 of the 7 grandkids overnight Friday, got to go swimming for the first time this summer since I didn’t have the PICC line.

My appointment on Wednesday turned into a full day. I ended up having 3 extra tests done in preparation for a possible transplant. Since everything seems to be moving in that direction, it was good to get those out of the way ahead of time.

PRAYER REQUESTS:

Patience in the waiting. We wait another 9 days for my appointment in Iowa City. Then we wait 7-10 days for the results of the tests they will do in Iowa City.

For my energy to rebuild. I struggle to get anything done in a day. Even if I do get something done, I feel like I need a nap after I accomplish anything. Even just emptying the dishwasher can totally wipe me out.

PRAISES:

The mouth sores are improving. I am able to talk normal again and food is going better.

God is good….all the time!

Two days after being told “no transplant”, we received a disturbing test result in My Chart. One of the Iowa City blood tests said that the NPM1 mutation was present. Tim called Iowa City on Monday and talked with the transplant coordinator. She told him that she meets with the transplant doctor every Tuesday and would call him back Tuesday morning. We heard back today. They want us in Iowa City for more labs and another biopsy on August 18th.

Since that was the day Tim was supposed to start his next round of chemo, that is on hold for now. Iowa City is going to talk to the donor about a possible mid September transplant (in case one is needed). The results from the tests on the 18th will determine if a transplant is needed and donor availability will determine when.

PRAYER REQUESTS:

Tim is really struggling with mouth sores again. This is a normal side effect of chemo but tough to deal with. It makes it hard to eat and hard to talk. He did have a platelet transfusion on Monday, so hopefully, they will start to get better.

Obviously, prayers in the waiting. While we wait for the appointment on the 18th and while we wait for the results of the tests, which will take about a week.

If we are heading for a transplant, there will be lots of details to work out from how Cassie will be able to work remotely, to where she will be able to stay, to how we will cope with life for the next year to year and a half following the transplant. We know God is in control but there are still waters that will need to be navigated.

PRAISES:

Long term disability finally got approved!

Overall, Tim is still feeling pretty good. We were able to celebrate our youngest daughter’s 21st birthday yesterday with most of the family. If you can’t tell, family is very important to us and we know just how blessed we are to have our kids and grandkids so close by and to be able to see them so frequently.

All the time….God is good!

We headed to Iowa City today fully convinced they were going to tell us Tim needed a transplant and soon. (It was eluded to when the appointment was made.) When the doctor came in to talk to us, basically, the first thing they said was that they didn’t think a transplant was necessary at this time!! PTL!!!!!

It sounds like they made the appointment based on some blood tests that were done on June 10th. That was about 2 weeks after the start of Tim’s first round of maintenance chemo. That test showed that there was still some of the NPM1 mutation in his blood.

However, that was too soon after the chemo to be an accurate test. After seeing that the bone marrow biopsy on June 22nd showed NO signs of the NPM1 mutation, the doctors realized they had jumped the gun a bit. All that to say that we are still in the NO TRANSPLANT category!

From here, Tim has one more round of maintenance chemo which is scheduled to start August 18th. Then, sometime the week of September 21st, he will have another biopsy. If that test continues to show no signs of the mutation (or any new ones), Tim will be released to work shortly thereafter. He will continue to have blood tests every 4-6 weeks (with an occasional biopsy thrown in) for the next 2 years.

PRAYER REQUESTS:

That Tim’s bloodwork continues to show no signs of the mutation (or any new ones).

For our mental health. While this news is absolutely fantastic, we are emotionally drained from the roller coaster ride we have been on, especially the last week!

PRAISES:

Obviously, we are thrilled (and surprised!) by this turn of events. We have a good and loving Father who has been with us every step of this journey. Last night, as Tim and I discussed what we expected today was going to look like, we talked about God’s peace we had been feeling. Tim said that he still felt like he would be healed, even if it wasn’t here on Earth! We are thankful that, for now, God has chosen to bring healing here.

We are also thankful for all our prayer partners! We have been surrounded by a world full (literally) of people praying for us and we are humbled by it all. We thank each and every one of you that have been praying for us!!

Tim finished his 3rd round of maintenance chemo Saturday night. The week in the hospital went well. As expected, he is a bit tired and the heat has not helped that. Of course, with this heat, I think most of us could say that!

While he was in the hospital, we finally heard from Iowa City. They want us to come for a consultation on Wednesday (7/29). We are a little confused by the transplant team wanting a consult. The last time we were there (and with the results we had gotten from the last biopsy), all signs indicated that a transplant would not be necessary. We are anxiously awaiting what the doctors will tell us as to why they requested this meeting.

PRAYER REQUESTS:

For our nerves as we wait to hear what the doctors have to tell us, for travel safety to Iowa City and back, for the transplant doctors as they make decisions on our behalf, and for us and our family if they decide a transplant is necessary. To say we are apprehensive is a bit of an understatement.

PRAISES:

We had a great day today with all our family (except 2) celebrating Cassie’s birthday. We are wonderfully blessed to have them all as close by as they are and for how much we are all able to get together. It was so encouraging to sit with them and discuss things like trips to the Iowa State Fair, fall camping trips, and our plans for Christmas.

Life has been busy! We got our daughter and her family moved from Nebraska to West Des Moines, managed to get Tim through Sarah being sick without having any issues, and even moved a shed from our neighbor’s house to ours. We appreciate so much the help of a couple very dear friends that braved the heat to help us move Emily and the wonderful neighbors that helped so much with the shed.

Tim has been doing fairly well. He struggled with feeling more tired and had some trouble with mouth sores after the 2nd round of maintenance chemo but, in general, has done well.

He starts his 3rd round of maintenance chemo tomorrow. A bit bummed that he will be in the hospital now that it has decided it is going to cool down but…

PRAYER REQUESTS:

For this next round of chemo. Each round he will continue to have a few more or more severe symptoms. His body just doesn’t have the time to recover so each round makes it a little weaker.

We have been told that he SHOULD, finally, receive some long term disability. There are still a couple forms that they need but, if all goes as well, we should finally start receiving some payments soon. Please pray that all goes well!

We ask for prayers for his future employment as there are still some unknowns.

PRAISES:

That Tim’s immunity held its own while Sarah was sick. While we took precautions, there is only so much you can do when you are living with someone that is sick. We are thankful that he was able to fend off this attack.

We are thankful that Tim had the strength to do some hard tasks and long days these past weeks, and for friends, neighbors, and family on the days he wasn’t up to the challenge!

Tim has been more tired this round. He wants so badly not to be but, alas, his body just won’t let him do too much. This is very normal. The doctor said each round will be a little bit worse as his body is not able to recover as much each time. He did need to have platelets yesterday but that is all so far.

We had a good 4th of July weekend. We got to spend some time with our oldest grandson. We also go to spend time with Tim’s family in Cedar Rapids to celebrate his brother-in-law’s birthday, and the 4th with most of his siblings and many nieces and nephews we don’t get to see much!

On Sunday, Tim got the opportunity to meet a cancer warrior (also named Tim) whose cancer journey makes ours look like a walk in the park. He was very encouraged by this meeting and seeing how far Tim has come in his journey. We have been praying for him for a while now and it was good to see how well he is doing.

Just wanted to give a quick update and let you all know that we are still here and things continue to go as well as can be expected. Thank you all so much for your prayers and words of encouragment!

PRAYER REQUESTS:

We will be headed to Nebraska this weekend to help our daughter Emily and her family move back to this area. Tim will, as all dad’s do, want to do more than he should. Please pray that we will be able to keep him from doing too much. At the same time, please pray that everything goes well and we are able to get it all done!

PRAISES:

We are thankful that Tim has not had any more episodes of passing out. Despite the tiredness, he is feeling well. We have been around quite a few people recently and he seems to be handling that well also.