Due to John's fever last week, his scans were rescheduled. He was able to get two MRIs done while he was in the hospital last week. His PET scan was rescheduled for yesterday and he was supposed to fast for it. He woke up and drake gatorade so he had to reschedule. Because of that, we had what could have been a typical Saturday for us pre-cancer. It was SO nice! We got up, had breakfast, took Daniel in for a well-child visit. We had lunch then went out shopping. We re-decorated and repurposed our loft last year. (Before/After - I have to show off my friend's work; she did an AMAZING job!) We are getting rid of a couch that no longer fits in our loft, so we went out shopping for a new chair. The boys LOVED trying out all the "comfy" couches, chairs and beds. They had so much find "finding" kitchens, washer/driers, beds, etc. It was probably better than Disneyland. I think they got the same thrill but we didn't have any lines to stand in. That is probably the most walking John has done in a few months, and he survived! When we got home the boys told us that we should have brought one of the comfy chairs home with us :) We didn't bring a new chair home, but we did find another person to pray for us. One of the salesmen at RC Willey has added us to his prayers.
Now I am sitting in the waiting room waiting for John to finish his PET scan. Earlier today we met with the ENT oncologist. He stuck a camera up John's nose and we all watched the tv screen to see the progress. The first time we saw it three months ago, it looked like a giant bunch of grapes stuck inside; today it looked more like a single blister. The ENT oncologist is thrilled with the progress the nose tumor has made. Surgery is still a possibility but he said it would be a simple out-patient procedure. He is not scheduling or planning a surgery right now though. We will have another follow-up with him mid-radiation. The nose tumor was the only one the ENT was following. So we will have a more complete evaluation from our doctor sometime after the PET scan report is finalized tomorrow.
Wednesday, January 28, 2015
Friday, January 23, 2015
Books
Thank you to whoever gave us the book Heaven Is Here by Stephanie Nielson. It's been a really good read during this hospital stay. For those of you who are unfamiliar with the book, it's about a mother who was in a plane crash that burned 80% of her body. It's about life before the crash, the crash, and her recovery. Our experience is obviously very different from hers. But there are some similarities and she describes a lot of how I feel sometimes from going through this cancer journey. But it's so encouraging to read a story of hope and joy and unconditional love. And it's also nice to cry for someone else's story instead of our own.
Wednesday, January 21, 2015
Fever #3
John was supposed to have his scans today to check his progress as well as to help the radiation oncologist decide on his radiation game plan.
BUT he started the morning with chills. When he gets chills, it's not just typical shivering; it's uncontrollable teeth chattering and full-body shaking. (This time, so far, there hasn't been the teeth chattering.)
To have a PET scan, they have you relax in a chair for an hour before you go into the scan. With John's shivers there wasn't any way that he could relax. So the scan was cancelled and we were instead sent to the Accute Care Clinic. (That's kind of like an emergency room except they have office hours and you have to have an appointment. It only took John's nurse 5 minutes to schedule an appointment for him though.)
The Accute Care Clinic got John's cultures, etc so they can search for an infection. Then they sent us up to a hospital room on the 4th floor. So now we are just hanging out waiting for the fever to go away and his white blood count to recover. His white blood count has to be at .5 or 500 before he can go home; right now he is at .25 or 250. So far, we haven't heard back if he has an infection but since he doesn't have symptoms of anything, then so far they are just guessing it's a neutropenic fever like his other ones.
We are hoping he will be able to get his scans before he leaves this hospital stay.
(Hi Kimberly :) )
BUT he started the morning with chills. When he gets chills, it's not just typical shivering; it's uncontrollable teeth chattering and full-body shaking. (This time, so far, there hasn't been the teeth chattering.)
To have a PET scan, they have you relax in a chair for an hour before you go into the scan. With John's shivers there wasn't any way that he could relax. So the scan was cancelled and we were instead sent to the Accute Care Clinic. (That's kind of like an emergency room except they have office hours and you have to have an appointment. It only took John's nurse 5 minutes to schedule an appointment for him though.)
The Accute Care Clinic got John's cultures, etc so they can search for an infection. Then they sent us up to a hospital room on the 4th floor. So now we are just hanging out waiting for the fever to go away and his white blood count to recover. His white blood count has to be at .5 or 500 before he can go home; right now he is at .25 or 250. So far, we haven't heard back if he has an infection but since he doesn't have symptoms of anything, then so far they are just guessing it's a neutropenic fever like his other ones.
We are hoping he will be able to get his scans before he leaves this hospital stay.
(Hi Kimberly :) )
Thursday, January 15, 2015
80% I/E
We are so close to finishing this week's treatment! John was very reluctant to get here since this is the hardest week on him. When we met with Dr. Wright (his sarcoma oncologist) she was pleased with how things were going. She really wants John's radiation and next round of chemo to be on time (Feb 2*), and she was glad that his 90% dose of the past two weeks had treated him so well. She is expecting good results on his scans next week. She said the same thing about it being more important to get a dose of chemo on time rather than to get the full dose on a delayed schedule. So she dialed this week's treatment to 80% of the original dose and one day less. This was great news and ALMOST made getting admitted for treatment easier on John. John was up and coherent up until Tuesday night. We had a lot of visitors Tuesday; thank you all who came, it was so good to visit. One of our visitors is a second cousin to John whose wife is going through treatments so we swapped cancer stories with them. Wednesday John tried sleeping all day. I thought today would be worse than yesterday, but John got up this morning for a walk and tried to be social for a little bit. But the exhaustion is hard to fight. My grandma came to visit me for breakfast and we walked up and down the stairs for a while. That was such a nice visit for me. My grandma is the best! She is always on call when we are in the hospital to bring us meals since the hospital food smells/tastes like the hospital. Last time we were here for this I/E treatment John had to be on oxygen and that helped him stay a little better because he couldn't smell the hospital smells. This time he hasn't needed oxygen but I brought a nose plug for him. He is on constant fluids and the smell of the fluids just take over everything - so the nose plug helps.
For entertainment, we still had some of the countdown chain leftover from our last stay, so we have been going through more of that - thank you again to all who contributed! I brought some photo albums to work on, so my file cabinet is a little less full. I had a work project I brought with me. I worked on a rubix cube. I caught up on some tv shows. We also got some 24 piece puzzles that friends and family had written notes on the back of; those were fun to read and our boys will love their new puzzle collection!
We are so excited to see John's brother and niece next week who are coming from TX to visit! And most of all I am excited to get Daniel back this weekend! I have only been with him for 2 days out of the last 2 weeks!! John's mom and her neighbors/friends/family have taken such good care of him, but we are SO ready to spend some time with him!
So our schedule update is that John is getting his last dose of chemo tonight and then fluids. We should be able to go home tomorrow. On the 21st, he will get all of his scans. On the 26th the entire team of doctors will meet to discuss John's progress and decide if anything in the treatment plan should change. So please everyone, pray for the doctors the morning of the 26th! I think that day is also a follow-up with the ENT oncologist (who is not a part of the big meeting). And then probably the 30th is a practice run for the radiation. Feb 2 will be radiation and another 5 day stay with chemo. And then I think he gets a week off chemo but he will have radiation every day except holidays and weekends until he gets, I think, 28 doses.
*Happy Birthday to Jill, Shauna, Turpin, Christina and anyone else sharing that birthday!
For entertainment, we still had some of the countdown chain leftover from our last stay, so we have been going through more of that - thank you again to all who contributed! I brought some photo albums to work on, so my file cabinet is a little less full. I had a work project I brought with me. I worked on a rubix cube. I caught up on some tv shows. We also got some 24 piece puzzles that friends and family had written notes on the back of; those were fun to read and our boys will love their new puzzle collection!
We are so excited to see John's brother and niece next week who are coming from TX to visit! And most of all I am excited to get Daniel back this weekend! I have only been with him for 2 days out of the last 2 weeks!! John's mom and her neighbors/friends/family have taken such good care of him, but we are SO ready to spend some time with him!
So our schedule update is that John is getting his last dose of chemo tonight and then fluids. We should be able to go home tomorrow. On the 21st, he will get all of his scans. On the 26th the entire team of doctors will meet to discuss John's progress and decide if anything in the treatment plan should change. So please everyone, pray for the doctors the morning of the 26th! I think that day is also a follow-up with the ENT oncologist (who is not a part of the big meeting). And then probably the 30th is a practice run for the radiation. Feb 2 will be radiation and another 5 day stay with chemo. And then I think he gets a week off chemo but he will have radiation every day except holidays and weekends until he gets, I think, 28 doses.
*Happy Birthday to Jill, Shauna, Turpin, Christina and anyone else sharing that birthday!
Saturday, January 10, 2015
Sick Kids
John's parents had our boys for our overnight stay last week. Both of John's sisters and their kids were able to spend the week with them. The boys had a lot of fun with their cousins! We got our boys back on Friday. On Saturday, Daniel was sick. On Sunday John's parents were still in Utah so they came and took Daniel back with them again. So we have been Daniel-less this whole week. This week, Thomas got strep and Carson has a virus. This week is also the same week during John's cycle that he got one of his fevers during his last cycle. So we have been working really hard to keep him from getting sick. So far it is Saturday morning and he has stayed healthy! We are hoping we make it through the weekend without any fevers (that was the goal of backing off the chemo a little).
On Monday of this week, John had his outpatient chemo. He tried it this time without nausea medicine and handled it really well. We also met with the radiation oncologist, Dr. Poppe. Dr. Poppe explored John's nose (NOT FUN!) and couldn't see any sign of a tumor or scar tissue!!! He was in a hurry to get us out the door because John had a ct scheduled to make his mask and mark his tattoos for the radiation. Once Dr. Poppe learned that he had a couple more minutes before John could go to the ct, then he sat back down and answered all of our questions. Then John went for his ct scan and had his mask made. The mask will help John stay in place during the radiation.
We found out that Dr. Poppe will review all of John's old and new scans (which will happen in 2 weeks) and make a plan for the radiation. Then he will have a dosimetrist review the plan and make sure that the equipment will actually give John the doses that Dr. Poppe prescribes. After they go back and forth and think they have a working plan, they will put a mannequin in the machine and give it John's treatment plan. The mannequin will read all the levels of radiation hitting it and then the team will know if the plan is going to give the proper therapy to John. They will adjust it however they need to and then when they have everything figured out they will do a "dry run" with John. Everything should be ready for John's radiation to start of Feb 2.
As long as John stays fever-free this weekend, Monday will start a long week of ifosfamide and etoposide. Then we get two weeks off. On Feb 2 we will have another long chemo week (of I/E) with the radiation starting.
Thank you everyone for your continued support and prayers!
On Monday of this week, John had his outpatient chemo. He tried it this time without nausea medicine and handled it really well. We also met with the radiation oncologist, Dr. Poppe. Dr. Poppe explored John's nose (NOT FUN!) and couldn't see any sign of a tumor or scar tissue!!! He was in a hurry to get us out the door because John had a ct scheduled to make his mask and mark his tattoos for the radiation. Once Dr. Poppe learned that he had a couple more minutes before John could go to the ct, then he sat back down and answered all of our questions. Then John went for his ct scan and had his mask made. The mask will help John stay in place during the radiation.
We found out that Dr. Poppe will review all of John's old and new scans (which will happen in 2 weeks) and make a plan for the radiation. Then he will have a dosimetrist review the plan and make sure that the equipment will actually give John the doses that Dr. Poppe prescribes. After they go back and forth and think they have a working plan, they will put a mannequin in the machine and give it John's treatment plan. The mannequin will read all the levels of radiation hitting it and then the team will know if the plan is going to give the proper therapy to John. They will adjust it however they need to and then when they have everything figured out they will do a "dry run" with John. Everything should be ready for John's radiation to start of Feb 2.
As long as John stays fever-free this weekend, Monday will start a long week of ifosfamide and etoposide. Then we get two weeks off. On Feb 2 we will have another long chemo week (of I/E) with the radiation starting.
Thank you everyone for your continued support and prayers!
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