Thanks again to everyone for your support and prayers. I thought it would be neat to share some of our favorite memories of Dan on the blog. If you have a quick memory you would like to share please comment on this blog post. It doesn’t have to be a big experience, in fact, Dan preferred the small, quiet things of life. Please share with us so we can have a record of the laughter and the love that surrounded my fathers life.
Dan passed away peacefully surrounded by family at home on Wednesday night, August 3rd. We would like to thank everyone for the love and support we have been given and continue to receive.
The funeral service is being arranged for Monday, August 8 at 11am. We plan on having a viewing Sunday evening as well as Monday morning.
The service will be held at the stake center. 555 east Union Manti.
The following is an update from Dan’s sister Janet who is in Manti. Dan spent almost 10 days in the Gunnison hospital for pain related symptoms:
Danny is back home and resting comfortably. He woke with a backache and a severe headache today. I went to the hospital with Celeste this morning. Dan was discharged from the hospital and then met with Dr. Wallentine before having another IV treatment of avastin. I was there for the meeting with Wallentine. Here is his report. Although the MRI indicates improvement, the way the avastin works can mask tumor growth. We were told that the symptoms Dan is having trump the MRI report. In other words, it doesn’t look good right now. Probably the avastin is slowing down the growth, though, so they want to continue the IV treatments. Wallentine got on the phone with the oncologist from the Hunstman institute and they were in agreement about how to proceed. Basically, Dan will continue to get the avastin until it either stops working or it becomes too toxic for Dan to handle. Wallentine made it clear that the avastin is not what’s causing Dan’s symptoms—they are a result of the tumor, which he described to me as a fast growing stage four tumor. Celeste is trying to get an appointment for another MRI and a consult at the Huntsman Institute the beginning of August. Wallentine said maybe Dan will surprise us again. Later I saw Wallentine in the hall and while it was just the two of us I asked him to verify that hospice care means that treatment is discontinued and he said yes. I also asked him how long he thinks Dan would live if the avastin was discontinued and he said that because of how long Dan’s had the cancer and the type of tumor it is he would guess maybe two months.
Two brethren were here today to help get Dan in the house. He is pretty much dead weight, plus today he is nauseous and just not feeling too great. They also gave him a blessing before they left. Danny continues to be gracious and kind to all around him. Celeste has arranged for a CNA to start coming to the house on Tuesday. McKay and McKenzie will be around this weekend. I will stay until Tuesday morning. Dan is staying in the bedroom on the main floor of the house and has an adjustable hospital bed. He is tired and dozes off a lot.
Mom, Dad and Marie drove to Salt Lake Monday afternoon and spent the night downtown. Dad had an MRI appointment at the Huntsman Institute this morning at 8. The consultation was at 1pm. I met them there for the consultation along with Janet, Gary, MacKenzie and Kaira. We were a little surprised at the results. The first oncologist we spoke with went over the MRI with us and we could clearly see a white area that was larger than the MRI image from March. The doctor said the white area is not necessarily the tumor. He believed there is a fair amount of necrosis showing up as well. It is not uncommon to see cycles of necrosis in patients that have received radiation treatment in the past. The doctor could not tell how much of the white was necrosis and how much was the tumor. Janet asked him if he could estimate a percentage and he said he would lean toward it mostly being the tumor. He also clarified that for all intents and purposes, it is really one tumor, since it likely comes from one source. He guessed that the white area we saw would fit inside a ping pong ball. The doctor said whether it is necrosis or the tumor, the next steps would be the same. He recommended switching to a new treatment called Avastin. He did not believe that Temodar would continue to be effective. Avastin is administered by an IV every two weeks. Dad should be able to receive this treatment in Gunnison. The side effects are minor. It should be easier to take than the Temodar.
The doctor answered some of our questions and after a few minutes we met with another specialists who looked at the MRI and told us exactly what the first oncologist had told us. He gave us the same diagnosis with the exception that he believed the white area to be more necrosis related than tumor. He then proceeded to also recommend switching to Avastin and discontinuing Temodar. 4 – 6 weeks after beginning Avastin we will do another MRI to measure progress. As long as it seems to be productive and the side effects are bearable, we will continue to take Avastin. After several months it may be possible to lower the dosage. Most Avastin patients are able to reduce the dose of steroids as well.
I know Dad was relieved to stop taking Temodar. It turned out to be very hard on him and he began to dread it. I felt that if the doctors had asked Dad to continue Temodar we would have had to seriously consider not continuing treatment. I was worried that we might have to have that conversation so as much as I would have liked to hear them say they couldn’t find any tumor at all, I think switching treatment at this point is a way to re-concentrate and get behind another solution. We feel that the large white area is mostly necrosis and I can’t help but feel that the severe swelling we recently discovered this weekend is a factor as well. In my last post you can read about how Dad stopped taking steroids and within a week his symptoms of paralysis were back due to swelling in his brain which the steroids alleviate. Today I was pleased to see that after only two days back on steroids his dexterity and movement was much better.
We continue to press forward. We still don’t know what the future will hold for us. Although we aren’t going forward with Temodar, I feel maybe it had its place along this journey. Everything seems to have had its reason so far and I still feel whatever happens is meant to be. Many thanks to everyone for the continued love and support.
I came home for the weekend and noticed Dad wasn’t using his left arm again. He was also shuffling around like he had been earlier this year. I knew he had been weaning himself of his medication and he told me he hadn’t had any steroids for a week. He also admitted to losing some bladder control. Mom said she noticed the symptoms 3 days ago but she has been too preoccupied to do anything. Marie and I talked to her Saturday morning and convinced her to call Dad’s nurse. The nurse spoke to the oncologist on call and he recommended we take Dad to the ER to do a full examination. Dad was having some severe constipation and was in a lot of discomfort and pain. He didn’t want to go to the hospital but after a lot of coaxing, we got him in the car.
At the ER he was given an IV, some pain killers and felt much better after he went to the bathroom. All of Dad’s vitals checked out great. The CT Scan showed a lot of swelling and the doctor recommended taking steroids again to help manage the swelling. We got a few pills for the weekend and a prescription for more steroids and headed back home.
The doctor at the ER also told us we would have more information after our MRI on Tuesday. He said we would have a clearer image and the oncologist may change his dosage of steroids as they see fit.
I also found out this weekend that my Dad is on anti-depressants. If he’s up for a visit, please stop by and say hi, I think it might help him feel a little better.
I feel like the symptoms from my Dad’s tumor have pretty much disappeared but the strong medication he has been subject to has wiped him out. He is still very weak. He is constantly tired and plagued with nausea. He is gradually reducing his medication and says he feels more like himself with every cut back. He rode his mountain bike last week and went to all 3 hours of church yesterday. We look forward to his visit to the Huntsman Institute in Salt lake on May 31st. I would like to stress the importance of this visit. They will take another MRI and discuss the next steps to take based on the results they find. The decisions we make that day will likely have a lasting impact on my Dad’s life going forward.
As many of you know, my Dad has received a chemo treatment called Temodar. Patients that begin Temodar treatments are never expected to go off the treatment unless it proves to be ineffective. The treatment seems to be working wonderfully for my Dad but combined with the additional medication he has to take with Temodar, the side effects have greatly degraded his quality of life. I fear the physical and emotional toll my Dad has been through the last 6 months has been so great that if the doctors recommend continuing with the Temodar treatment, I suspect we will consider to decline the treatment in order for Dad to enjoy a higher quality of life.
However, if the doctors find the tumor has receded enough, or even disappeared, we assume they will not have us continue the treatment. Should this be the case then we truly have witnessed a miracle. From what I have gathered, the medical community has never seen Temodar actually reduce a brain tumor to nothing.
Obviously, the second scenario is the result we are hoping and praying for. Your prayers and faith have carried us this far, I would ask, on behalf of my family, that we all make another concentrated effort to prayerfully prepare for this doctors visit on Tuesday, May 31st. Let’s carry Dan through the finish line! I know our prayers are heard and felt. Thank you all again very much!
This update may be too quick in coming to the last one. I thought it might be fun to include a few pictures. We celebrated Ashton’s 1st birthday at grandma & grandpa Tervort’s home with a strong showing from Sarah’s family, of course. Sarah and Kenzie put together, with help from the aunts and cousins, a nice hamburger/hot dog dinner with salads etc. Saturday I tried to fix a squeaky fan belt on the PT. I’m laying on my new shop roller gadget that came with a car jack on rollers and adjustable stands. My strength, whits, and dexterity were not up to the task, by the time I figured out what and how to fix it, I ran out of time. Had a hot date with my home nurse. The black t-shirt “IMPOSSIBLE IS NOTHING” has been a big hit. Mom gave it to me for my birthday. The other picture is Ashton and grandpa pajamas twiners – got everyone laughing so we had stop for a pose. WE saw Soul Surfer Saturday – good movie. Hit a bit close to home for us, should have carried more tissues.
I was able to attend the entire block of church meetings (some might not call that a blessing, but I do), but I kept forgetting what meeting was next. Chronology of events and appointments is hard for me to keep straight. I see Dr. Wallentine again Thursday and start round five of treatment in about a week. Nice to be on the down hill side of the treatments. I’m reducing meds, almost off steroids completely although the face is still puffy. Reducing the morphine has proven to be a bit more temperamental. I think it’s having the strongest side affect on my mental/memory functions.
I hope spring is shining warmly wherever you are and that we have a good week.
I love you and appreciate you so much – now I’m crying again.
Im not sure what updates may have already been sent (by mom to the siblings), some of this is repeat for you. The last two days have been landmarks for me personally. The nice weather and my condition allowed me to work in the sunshiny yard two hours each day. I mowed the entire lawn and hoed the weeds, raked the dead fallen twigs( branches) in the planters. It felt great and the yard looks better too. I feel a bit weak and shaky while I’m working but I able to do it nonetheless. Tuesday some friends took me and Celeste out to dinner for my birthday – we had a good time. Marie’s daily schedule is too long with soccer games out of town and early-morning seminary, which she usually misses now anyway. We seem to have hit a stride in this strange segment of our lives. I hoping to see results from reducing medications. I think the puffness in my face is loosening slightly, I can pucker to whistle now anyway. By the end of May I’ll be off most everything.
Thanks for the well wishes and prayers. It’s all working for our good.
Many thanks to Tricia and the Bradley’s for organizing the 5K run for my dad yesterday! It turned out to be a very special day for me and my family. Thank you to all those who showed up to support us. There was a great turn out and we truly felt the support of the community. Check back later for some pictures of the event. We’re going through them to pick our favorites.