Category: Status Update

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.

We just received the news that Tim’s biopsy shows no signs of the mutation NPM1 ! See what this means below:

What NPM1-negative MRD means in plain terms:

The most sensitive molecular test available looked for traces of his specific leukemia at a level far below what any standard test can detect — and found nothing. The cancer’s fingerprint is gone from what they can measure. That is the single best possible result from post-induction testing. It’s not just remission. It’s deep molecular remission.

There were also some other mutations, but from what I understand, this was the primary one.

That means that, at this time, no transplant is needed. He will continue the next two rounds of maintenance chemo and then will have regular blood tests to keep watch.

God is good! All the time! All the time! God is good!!!!!!!!

Tim was released from the hospital early this afternoon. Still don’t have a good idea of why he passed out. They wanted him to have a heart monitor at home but insurance wouldn’t cover it, so we will just be extra vigilant. He is still more tired than usual. He does have an appointment with his oncologist tomorrow so will ask about that. We figure it is normal but you just never know.

Thank you for your prayers yesterday and today. We may never know what happened but God does.

This morning while getting labs, Tim passed out. It was very brief and the really don’t know why. He was having some PCV (Premature Ventricular Contractions). These are actually rather common and can happen to anyone. Chemo patients do tend to have more episodes of them also. The ER doctor, out of an abundance of caution, decided it would be best for him to be admitted overnight for observation with a heart monitor. So, back to the hospital he went. They will keep him overnight and, hopefully, he will be released tomorrow. There is a good chance he will have a heart monitor for a week or two at home also.

While this was not in our plans, it doesn’t appear to be a serious issue for which we are grateful.

Thank you for your continued prayers!

Tim got home last night about 10:15 from his 2nd round of maintenance chemo. The week went well and he feels pretty good but has been more tired than usual today. While he is doing well, there has been quite a bit going on that brings reality into check.

This week, Cassie took a walk. It happened to be a walk alone, which she hadn’t really done since the night Tim called her (while on a walk alone) to say he was headed to the emergency room. Who would have thought that a simple walk would be so triggering.

This morning, during church we sang one of Tim’s favorite songs. It also happens to be a song that we sang with our kids during both of our worship times at the hospital. It hit different today and Tim got very choked up and had a hard time singing it.

While at the hospital this week, a patient on the oncology floor passed away and then today we heard about a dear friend that had also passed away. There are about a dozen people on our church’s prayer list with cancer.

These have all combined (along with a couple other things) to really bring home the fact that this is something we will live with for the rest of Tim’s life – however long that may be.

While he is doing well now, things could just as easily turn on a dime next week, or next month, next year, or even 20 years from now. We never know when we might leave this earth. We have taken to heart the fact that Tim might be healed on this side of earth but never truly healed until he leaves this earth.

His long term prognosis at this point in time, seems to be good regardless of whether transplant is needed or not. However, the realization that so many are battling cancer and other serious illnesses and not doing as well is very heartbreaking to us.

We thank you all so very much for your prayers for us. Your continued prayers are very much appreciated. In spite of this week’s reality checks, we do still have a sense of peace, regarding our situation, which can only come from our Heavenly Father.

We are praising the fact that our dear friend is, right now, completely healed from all that was wrong and is seeing her Savior face to face.

Tim started his 2nd round of maintenance chemo yesterday and so far things have been going well. Yesterday he spent most of the day relaxing and resting from the weekend. He has access to watching the World Cup soccer matches while in the hospital and has been taking full advantage of that.

Today he did quite a bit of walking. I stopped up after work and walked with him a bit. One of the other patients on the oncology floor stopped us to tell Tim he is impressed with how fast he walks the halls. It was a nice opportunity to meet another patient there and we had a very nice chat with him.

PRAYER REQUESTS:

Please pray for G (the patient we met). He is being treated for bladder cancer. He was given 2-5 years. He had been doing quite well and then recently his blood tests indicated his kidneys were not doing well. Please pray for his treatments to be successful and that he will feel the peace of God. I am not sure if he is a believer, but he talked about seeing all the blessings in our ‘situations’.

PRAISES:

Tim’s back is feeling much better after getting the rest and relaxation of yesterday. Thank you for your prayers!

Our conversation with the fellow patient reminded us of just how many ways we have seen God’s hand in all that has happened. We are so thankful that we have a good and loving Father that cares for us. We have been shown time and time again that He will never leave us or forsake us!