Category: Status Update

We added a second type of chemo today. He will have both types for 2 more days, then a day of rest, then transplant day. Tim is feeling more tired but, in general, things are going well. He actually stayed in bed today until 9:00 a.m. If you know Tim, you know that is LATE!!

While he is feeling well still, he is trying to get his first marathon done. He finished the half marathon plus today so, if we get 10.2 more miles, he will have that.

PRAYER REQUESTS:

That things continue to be fairly uneventful. We can deal with tired. It’s some of the other things that we are hoping to avoid!

PRAISES:

That things continue to be fairly uneventful. Yes that is the same thing as above. We are thankful for uneventful and pray that it stays that way as much as possible.

In the hospital they refer to days as pre or post transplant (kinda like AD or BC) and today we are on Day -5. That means that he is 5 days away from transplant. Transplant day will be day zero, and then we will begin counting up from there.

Tim was finally admitted last night between 9:00 and 9:30 and chemo finally started around ,midnight. It was a very long day!! We are told the chemo will be moved to about 10:00 tonight.

Besides the lateness of the situation, the helipad is very close to his room and they were going in and out quite a bit last night. It will take a little getting used to but I think, eventually, he will not hear them as often.

We had a busy morning this morning as all the specialties came to visit Tim for the first time. We saw the dietician, physical therapy, pharmacist, and the Dr and PA. Tim was very excited that the physical therapist will continue with many of the same treatments he was receiving before coming here for his neck and back.

They encourage walking and even have ‘prizes’ for how many miles you walk. He earned his 5K badge today and will likely get the 10K one also. We are told that the record is 3 marathons. Given his competitive nature, I am sure he is striving to beat that!

He is a bit tired today but hard to tell if that is the chemo already or just the schedule we’ve had!!

PRAYER REQUESTS:

Cassie had a pretty hectic day today trying to get connected with work. It was a learning curve for sure! Prayers that we can fall into a routine and not have as many connectivity issues would be appreciated.

We are told that as his counts start to drop, that is when he will start to have the most trouble. A few days after transplant is typically when most start to have issues. Please pray that he is able to make it through as much of that as easily as possible.

PRAISES:

We are thankful that things are going relatively smoothly despite not getting here until late last night. Tim was able to take a little nap today but not enough that he won’t be ready for bed when the time comes. We appreciate all that have reached out to let us know they are praying! We feel the prayers and the love!

We left home this morning and made a quick stop in Ankeny so Tim could see many of his work friends before traveling to Iowa City. Had a nice lunch and then headed to Hope Lodge to get Cassie settled in to her room. Then it was off to get Tim’s PICC line put in.

The PICC line did not go as well as the last time and Tim was not feeling the greatest when he came out of the procedure. We called the floor to see if his room was ready and was told to come back about 5:30. So, we went back to Hope Lodge where Tim fell asleep for a bit. That was a very good thing! He woke up feeling better. We headed back to the hospital to see if the room was ready yet. It was not!

We did meet with one of the PA’s on the floor when we were there and then went to find some supper. We just got a call to come back at 9:00 tonight. I think it is going to be a LONG night!

One note: Tim is able to have visitors but it is limited. Before making plans to come to Iowa City, please contact Cassie to make sure that he is able to have you there.

PRAYER REQUESTS:

Obviously, since today has been so long, prayers for good rest when we are finally able to get to that.

PRAISES:

That despite the long day, we had some good together time for our last day out.

That Cassie was able to get settled in and that Tim feels very good about where she is and how well she will be cared for there.

Today was spent tying up as many loose ends as possible. We were mowing, cleaning, packing, and many other things trying to get ready to leave for Iowa City tomorrow morning. We plan to have a final lunch date, get Cassie settled into Hope Lodge, then get Tim to the hospital for his afternoon appointment to have the PICC line put back in. From there he will be admitted to the hospital and chemo will begin.

There will be 5 days of fairly rough chemo. We are a bit nervous about how the chemo will affect Tim. The induction round was pretty bad and Tim is pretty nervous that it will be that bad again.

After the 5 days, he will have a day of rest and then will get the transplant on September 30th. For him, the transplant will be very similar to getting a blood transfusion. He will be in the hospital for 4-6 weeks. Once he is released from the hospital we are unsure if he will need to remain in Iowa City to be close to the hospital or if we will come home and have to travel back at least weekly for tests.

The first 100 days following transplant will be very tough as he will not be allowed to do much. His trips to the hospital/clinic for tests will be the highlight of his weeks.

PRAYER REQUESTS:

Please pray that Tim will be able to handle the side effects of chemo as well as possible. He is feeling much better and has been healthier than during the induction round of chemo.

Another issue from the transplant is something called Graft vs Host Disease (GVHD). This is very much like rejection of any organ transplant. Tim will be on an anti-rejection medicine but they will slowly wean him from it as they need his body to allow the donor marrow to “take”.

Please pray for Tim’s mental health also. He is a very active person and this will put him down for a good 4-6 months or longer. There are many things he normally does that he will not be allowed to do. It will be very tough on him to not be as active as he normally is.

PRAISES:

We were able to spend this past weekend with our whole family camping and celebrating our youngest granddaughter’s first birthday. We had much better weather than we thought we might. The kids even surprised Tim by having shirts made. They found a book called “Bampa’s Bag”. That is what the grandkids call him and the book is about a couple little girls putting together a bag of activities and encouragement for their Bampa who is having cancer treatments. The book was written by a woman in West Des Moines and fits incredibly well with our situation. It was a very emotional celebration!

First, we want to thank everyone that continues to read our updates, pray for us and our family, and send us words and notes of encouragement. We know that, while it is the biggest thing in our lives, it is not in many of yours and we appreciate so much those that continue to reach out!

We left for Iowa City last night, luckily staying just ahead of the big storms that were trying to catch us. We were able to stay the night at Hope Lodge, which offers free housing for cancer patients and their caregivers. Cassie will be able to stay there during the transplant and it was nice to be able to check it out and see what is there and what we might need to bring. We are so grateful that Cassie will have such a wonderful place to stay.

Tim had blood work (15 vials of blood!!) and then we spoke with the doctor and transplant coordinator and went over so much information. Providing all the blood work comes back the way they think it will, Tim will be admitted on Thursday, September 24th. He will have chemo for 5 days, a day of rest, and then the transplant will be on September 30th.

PRAYER REQUESTS:

Tim’s back and neck issues are noticeably better but still causing him some pain. He is being treated in various ways for these issues. Please pray for continued progress.

Prayers as we continue to tie up loose ends here before we go to Iowa City. Cassie’s work is a big concern for her. Please pray that she is able to be as useful as possible while being remote.

Prayers for both of us as we face this next step. There is some apprehension regarding side effects of the chemo and actual transplant. The induction round of chemo was so difficult for Tim that it’s hard not to be concerned for how this will go. For about 100 days after transplant, Tim will be very restricted on what he can do and where he can go. The thought of that is discouraging.

PRAISES:

We are so thrilled for the fact that Cassie will be able to stay at Hope Lodge. It is close enough for her to walk to the hospital on nice days. If it is not nice, there is a courtesy shuttle that will take her to the hospital. There are 2 kitchens (where she will have space in a fridge and pantry space), 3 lounges, a library, a workout room, laundry facilities, and many nightly activities. While she may not be able to participate in everything, it is nice to know it is there if she is able.

We are thankful that Tim felt good enough to enjoy the long weekend with family and friends.

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.