Jason's Story (older postings)
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June 24 - July 27, 2009
Wednesday, June 24
Jason was told the news about how critical and rare his cancer was and within 15 minutes he was taken for a spinal tap, bone marrow extraction, mri and a Hickman port put in his chest to get ready to receive chemo. He was gone for the whole day.
He is very exhausted. Jason's room is a very busy place and he never has a moment of peace. He has a huge team of Doctors from many different specialties and they consult with the Mayo in Rochester daily. Since it is so rare everyone is very involved and working on his case 24/7. It is like we are getting more exceptional attention because it is so rare. They do not even know if they will ever zero in on the type and it is rather irrelevant as the tumors have almost doubled in size in less than 2 weeks and we just need to start treating with their most aggressive chemo.
Thursday, June 25
Jason woke up this morning needing 2 blood transfusions (his platelets were low) and also an insulin shot to lower his sugar. These symptoms are a result of the chemo he had injected directly into the spinal fluid yesterday as there is cancer there also. Jason had his first radiation treatment on his spine today.
He had an appointment with Ear Nose Throat Surgeon as he has a sinus that looks full on CT Scan. Want to make sure it is not a fungal infection and are going to do surgery in the morning to take biopsy of this. If it is an infection they will scrape the sinus to remove it. He is having his first round of chemo today. He will be having 2 kinds of chemo at the same time. One will be a continuous IV giving chemo 24/7 for 7 days. The other chemo drug will be given to him at the same time but for only the first 3 days. He has had a 3 valve port placed in his chest yesterday. Both of his Grandmothers are flying in today. One of his aunts also arrived this morning.
Friday, June 26
Jason had a decent night following a sleeping pill and his 2 rounds of chemo and another blood transfusion. He still is having the terrible drenching night sweats and that interfere
with the sleep. He is scheduled for surgery today at 1 pm with ENT department. Radiation showed up early and brought him to get radiation on spine. Was brought back to room only to be whisked away to get ready for surgery to detect what was in his sphenoid sinus. Sphenoid Sinuses are found deep within the skull behind the Ethmoid sinuses. They are small cavities approximately the size of a large grape. The left and right sphenoid, sit next to each other and are separated by a thin plate of bone (septum).
Sphenoid sinuses drain the mucus into the very back part of the nose through a special opening called ostium. There are critical structures such as the nerves for vision and major blood vessels that carry blood to and from the brain which lie in close proximity to the Sphenoid sinuses. Therefore surgery in this area carries special risks. Tumors and cancers found in this area are extremely rare. Jason's biopsy has turned out to be cancer.
He was in recovery when they came and took him to get his spinal injectionof chemo. They definitely are on top of things here at Mayo and you rarely have to wait for anything. Another very busy day for Jason and he is exhausted. Now that he is back in his room they will now give him another round of the 3 day chemo. I think all testing is done and we will just be doing the chemo regimen from now on.
Sunday, June 28
Jason had a quiet day, preferring to be alone for the first time in three months. His brother, Jerry and his fianc? Melissa decided to cancel their August 8th wedding. They sent this email out to their guest list:
Hello friends and family,
I'm sure you have all received our wedding invitations by now, and unfortunately we have to make a change to the date. My brother has recently been diagnosed with a very rare and aggressive form of cancer (more at www.kickingitforjason.com)
Due to these unfortunate circumstances, my brother, and my immediate family will be unable to attend the wedding on the scheduled date. Obviously these are people I would not want to miss the event. Considering we don?t want to wait another year to get married, we have decided to still marry this summer in a small private ceremony. However, next summer you will receive another invitation to an encore wedding performance and celebration.
Oh, and Melissa says I need more emotion in this email so, WE ARE STILL MADLY IN LOVE !
Thanks for your support and understanding.
love
Jer and Mel
Monday, June 29
Jason spent the day in the recliner as he is tired of being in bed. He had some sparkle in those beautiful blue eyes for a while and it was good to see. I can see his body is starting to show the effects of chemo treatments 24/7. He is starting to look more withdrawn and his color is changing. He does not talk much, but his spirits seem good.
Wednesday, July 1
Jason had his last radiation treatment on his lower spine this morning and his last bag of chemo will be administered tonight. He has has chemo by IV constantly for 7 days. He will still have the spinal injections of chemo 2x a week to treat the spinal fluid. We will now wait 9 days to see if the chemo is working. Bone marrow will be taken and tested again, and also a CT scan to see if the tumors are shrinking. His blood count is starting to drop and will continue until it reaches zero. At that point they will watch to see if his body will start to make new blood cells on its own. If not he will need a bone marrow transplant. His brother will be tested to see if he is a match.
Friday, July 3
The waiting period has started. The Dr.s come in everyday, but there is no "news". Thank you to everyone for taking time out of already busy lives to organize fund raisers and prayer circles, talk to news media, send notes and photos, look for housing, contribute to Jason's fund and all the other things you have done for us, Jason and his family, during this time. We are touched and so grateful. Please continue to keep Jason in your prayers during this difficult period of waiting.
Saturday, July 4
He looked alert and comfortable when I walked into his room this morning and things seemed as good as can be expected. I cannot believe how well his body has tolerated all of that chemo. He is amazing to me. It was nice to see all the IVs disconnected and he could move about more freely. He cannot leave the room as his white blood count is almost 0 and he can't fight any infections, but it is still nice to be more free to move. About noon he was starting to have some bad pain and they gave him some morphine. His regular meds were not enough. His temperature was starting to rise and around 3:00 pm it was in the 100s. This is worrisome because of the risk for infection. They started talking about blood tests to find out what was happening. He coughed /cleared his throat, wiped his mouth and I noticed blood on his finger. After a few minutes of trying to figure out where this was coming from, the nurse looked in his mouth/throat and that was where it was coming from. Since his platelets (needed for clotting) are so low, he is at risk for bleeding anywhere in the body. Since he had a biopsy in his sphenoid sinus last week, they assume it is coming from that site and draining in the back of his throat. I chose to sleep on the pull out couch in his room this evening.
Sunday, July 5
Neither of us got much sleep last night as they were drawing blood and checking temperature and blood pressure many times all night. Doctors were in early this morning and ordered blood transfusions and some platelets to help clot the bleeding and replenish all the blood that was drawn during the previous evening/early morning. HIs temperature was back to normal and he look good again. We had only been awake for about 10 minutes when he decided he wanted a doughnut with chocolate sprinkles!! After getting permission from the Dr. I was off to find one. When I returned to the car with the doughnuts, I had a message on my phone to get a maple fried cinnamon doughnut, so I went back to get one. No luck, but I found a Dunkin' Doughnuts, so I would be ready for the next craving. He had a pretty good day with a lot of dozing off. I am happy to see him sleeping even though I know it is a lot of medication knocking him out for the most part. He has had so much pain for so long that it must be a relief for him, also.
Thursday, July 9
Tuesday evening the nausea hit hard after dinner and continued throughout the day on Wednesday. When the doctors came in for their morning rounds this morning, they were amazed to see Jason walking around the room. Jason said he felt terrible, which they said is normal given his blood counts; but they stated that he was up and around was unusual and a good sign that he is even strong enough to stand. Jason decided he wanted to shave his head before his hair started to fall out, so his brother, Jerry, helped him shave it. Jason was relieved to see that he has a nicely shaped head. The nurse told him he still looks handsome as ever.
Today he had bone marrow extraction and went to get another CT scan. The results from the bone marrow test will show how well the chemo is working; and the CT scan will show if the tumors have changed in size. We will be waiting until next week for the results.
Friday July 10
Today we received great news! Both the bone marrow and CT tests came back with promising results. Previously the bone marrow was solid and full of cancer. This time it was the usual semi solid like it should be with much less cancer involvement. The CT scans show the tumors in the liver decreased in size by more than 50% and there was significant shrinking in all the other tumors also. His lymph glands have also decreased in size. The infectious disease team stopped by to examine Jason because of a recent blood test that revealed some type of fungus. This is problematic because Jason's immune system in non-existent right now. Due to this infection the second round of chemo has been delayed.
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Week of July 13 thru July 18.
Today July 18 , Jason has finished his second round of chemotherapy. Due to the positive results he had to the previous chemo used, they gave him the same variety but for five days instead of seven. We are now waiting until the 28th to find out the results and if he is in remission or not. If Jason is in remission, he will have to wait until his blood counts go up, and then he can come home...something he wants so badly. He will then have to periodically go back for some preventative chemo to make sure he stays in remission. After these preventative treatments, he will need to get a bone marrow transplant for a long term solution. However, if he is not in remission, he will start another variety of chemo, and the waiting period will start all over. Jason is fighting his pain to limit the pain medication he has to take. He hates what the medicine does to his mind, and only takes pain meds when absolutely necessary. It has been great to see more of "him" over the past week. He is still very weak, and was devastated when he found out that, at minimum, he would be in the hospital for thirty more days. He is dreading the remaining spinal fluid chemo treatments, as the pain is very difficult to handle. Another thing weighing on his mind is his hair falling out.
July 20-25
This has not been the best week for Jason.
Tues, Jason had his final spinal chemo, and it has really taken a toll on him. We are happy this is the last he has to endure. All procedures are quite painful as your body does not heal wounds or punctures when your white blood count is almost 0. He is having a lot of nausea and has lost more weight. He has been running fevers so they are giving him IV antibiotics. The fevers keep coming and going and it is a bit concerning. Wed and Thursday have not been good days and he is really feeling quite bad. No TV, no computer, no phone, no book. You can tell he is just trying to make it thru the next few minutes and then the next few minutes. Jerry his brother and I are reading a book to him to help pass the quiet time for him. His fever spiked late Thursday afternoon to 102 and Thursday evening drs. decided to do a CT scan to make sure they don?t miss something that might be causing his fevers. It is a very concerning time and drs. Are staying to top of things. They discovered a blood clot in his neck area but cannot treat it with blood thinners because this would cause internal bleeding. We just need to let this sit and hope the body will dissolve it on its own. Friday results from CT scan showed tumors were still in liver and was not news we were looking for. They had decreased slightly but not as much as we had hoped. He is scheduled for Bone Marrow extraction on Monday to check to see if cancer has decreased there.
Sunday, July 26.
After attempts to call Jason Saturday with no response, I called Jason's nurse in the evening to find out if Jason was alright or if he just had his phone off and was trying to get some rest. He was not having a good day at all, I was told and they were all quite concerned about him. Earlier in the day they had found an infection in the Pick line that feeds directly into a main artery in the heart. It has 3 ports so you can have chemo in one line, take blood from another and give pain meds in the 3rd all at the same time. He had been having difficulty with this ever since they put it in and said it was extremely painful all the time. They had to remove it ASAP which was extremely painful. After going thru this today along with the news about the blood clot and tumors the previous day he has just about had it. Jerry and I rushed as much as possible on Sunday to finish our work and pack up and get back to Jacksonville. We arrived late Sunday evening. His skin was very red and he was slightly puffy all over from a rash that had started on his hip area the week before and had spread very quickly all of a sudden to his whole body and face. They are not sure what is causing this but had him quite sedated by the time we arrived. He squeezed my finger and asked where Jerry his brother was so I knew that he was aware we were there. Jerry stayed with him thru the evening.
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