At the beginning of the mucositis, Michael thought it was better than vomiting and feeling nauseaus, but . . . then it hit hard. The pain was unbearable and he couldn't even swallow. At this point they gave him constant pain control and suction for his mouth. I watched feeling very helpless as there was nothing I could do. For a couple of days he could eat popsicles, but then it got bad enough that nothing could really go down, sometimes he would suck on ice chips sometimes he just laid there not able to eat, drink or even talk. It was at this point that I knew he would probably be that way for upwards of a week and if I was going to get home, this was the time to do it. Once he was out of the hospital he would need fairly constant care, so I decided to go home. I had been at David and Mel's house for a party for Ezra, good food, awesome company and nice to get out of the hospital. I think it made me homesick for my own kids and family. I woke up the next morning and knew that I needed to go home. IT was Sunday and I just wanted to pack up and leave at the first moment that I could, but I let reason prevail and I went to church and then headed to the hospital to see how Michael was doing, if it would be ok for me to slip away for a bit. Thankfully he was stable and really it was just a matter of time for his mouth and throat to heal, so I left. I made it home in time for a dinner invitation that the family had with the Davidsons. Well, we had a wonderful time. It was refreshing to be home and I really wanted to stay. I ended up staying for about three days. I felt refilled and enjoyed my family, did a little problem solving with some of the kids, over challenges faced by being a teenager and facing the uncertainty that we were all feeling. I left with an assurance that everyone was ok. I had time to have my own meltdown and then pull myself together to head back. During the time that I was home our home teacher came by with a freezer that he had filled with food to help out. WE were overcome with appreciation and the thoughtfulness. We have been amazed the the gestures of kindness that have been shown to our family.
When I got back everything was much the same and continued that way for about another week. The mouth slowly started to heal as Michael's new cells started working. His counts slowly started to come up, indicating that the cells that Danielle had donated were starting to engraft. About this time he started to look like a bit of a star on Unit 57, the poster boy for bone marrow transplant. They were so pleased, as were we with the quick recovery of his counts and by Day 20 after transplant, they said that he could come home, conditionally until the doctors at the clinic had seen him a couple of days later, but the optimism was high for continued success in his recovery. And oh how nice it was to leave the hospital and not have to come back. Well, it was nice while it lasted . . .

late night adventures

Last night( Monday, the 26th) around midnight we ended up back at the hospital.. Fortunately Andrew was staying with us for a few days and was here to help to get Michael into a wheelchair and up to the hospital, as well as give him a blessing before we left. He started having severe pain in his chest, back and shoulders. They have done a ct scan a chest x-ray as well as blood work, and nasal swabs. They are unsure of the problem. They think there might be some problems with his lungs. They don't know what is causing the pain, but it has been severe enough that he has been crying when his pain meds start to run out. When we got Michael up to the unit Andrew suddenly turned white and looked like he was going to pass out. The nurses ended up getting him on another bed, so here I was with the two of them on the beds in the hospital room. Luckily Andrew recovered fairly quickly with some rest and juice and I left Michael about 3:00 in the morning to take Andrew back to the apartment. There was a touch of humor in the whole situation. Andrew has had that happen a couple of times, they are not sure what the problem is. The first time they checked his blood sugar and it was quite low, so some juice and cookies, and laying down cured it fairly quickly. Maybe he just doesn't like hospitals, seen way too much that goes on there. I can't say I blame him after all.

Friends, homesickness and mucositis

The day that Michael was admitted, there was another man,there with his mother, Michael and Pat KAnzig, being admitted for the same thing. We, the mothers had a few minutes to chat while our sons were having blood work done. We exchanged phone numbers, hoping to connect later. In the ensuing days we only saw each other a few times, due to the chaos of everything that we were going through. One day we chatted and talked about our families. I showed her pictures of my littlest daughter, 4 1/2 year old Lindi. I didn't think much of it until a few days later a friend of mine from Leduc, Arlene Travnik showed up at Michaels' hospital room. I was somewhat surprised to see her, and especially to see that she had made her way to the room where Michael was.??? We spoke briefly and she explained that Michael and Pat,that we had met the first day were her brother and mother. When her mother told her about us she knew who we were and found her way down to Michael's room and invited me to join them, her family, her mother, Pat, sister, Cheryl, who was her brothers donor, and her nieces, Sara and Paige, and her husband, and her husbands, parents for dinner at Paige's home. I had been feeling a little homesick for my family and kids about this time and was overwhelmed with their kindness to someone that they did not even know. They dinner was amazing. Paige's husband is a chef and everything was beautiful and definitely the best food I had had since....well for a long while. WOW!!! The company was fabulous. It was a wonderful time. I laughed and didn't worry for a couple of hours. I was again touched at the generousity of not just these people, but of our Heavenly Father for the tender mercies that he sent through a warm and loving friend.
I was not the only one feeling the weight of the separation from my family. Lindi had gone to stay at Cindy' home away from the family, and although she seemed to be doing ok, had started exhibiting behaviors that would tell us she was feeling stressed. Jim was back at home, feeling the weight of not having me there and also having Lindi gone and Michael very sick. Andrew called one night crying and wanted to know if it was ok if he came to see me because he just missed m. Jim decided to come down that weekend. IT was a relief to spend some time together and with Lindi. Jim ended up not being able to leave Lindi and took her home so that she would not be away from the family for so long. I think it was as much for him as it was for her. I think having here there was a comfort to him. She is a warm, loving and happy child.
About this time Michael's severe nausea had continued and he was having trouble keeping much down. Twice the doctors gave him day passes from the hospital and both times I had to bring him back. This lasted until about nine days after transplant. About that time he was able to come home for two days and was thrilled that he could finally eat .... until the morning of the second day. He awoke with his mouth feeling pretty sore, so he asked for just a milk shake for breakfast. He drank it and then promptly lost it onto the kitchen floor. Well, we headed back to the hospital and that was the beginning of a severe case of mucositis, a side effect of chemotherapy which causes death of the fast growing cells, particularly affected are the mouth, through the complete digestive tract. This looks like ulcerations, bleeding and sores through the area, making eating and drinking nearly impossible. Also accompanying this is an overproduction of mucus and saliva and an inability to swallow it. It will be a long a very painful two weeks.

Transplant Day - Day 0

I woke up early as we had to get Danielle to the hospital by 7:00. I jumped in the shower, when I got out, Danielle was sitting on the kitchen floor crying. I thought maybe she was just feeling unwell, but it turns out that she was scared. The process requires that they put a CVC line into her jugular vein, while she is awake. With her phobia of needles and blood, that seemed like an insurmountable obstacle for her to submit too. We talked for a few minutes and then knelt in prayer on the kitchen floor asking the Lord to bless her with peace. Well, we managed to make it to the hospital a little late, but we made it. We checked Danielle in at the Bone Marrow Transplant unit and then walked with her, slowly and rather hesitatingly down to the x-ray/ultrasound department to prepare for her line insertion. When we arrived a number of staff came out to help, as she was crying again by this time. Everyone was very kind and understanding. They provided her with some drugs to help her relax and lose some of her inhibitions. They worked well, except that life has been very stressful for Danielle of the past few months and she had carefully kept her pain tucked inside and the medication let it all out. She cried more about all the things that had hurt her so much over the past few months. I don't think that is what the staff was expecting. The nurse said to Danielle "We are done putting the IV in?" I told her"SHE is not crying about the IV any more". About now they injected more drugs into her IV and she laid back and smiled, kissed everyone as they wheeled her into the procedure room. While there she commented about how much she loved her Mom and thanked them for the music( which was not there). She did just fine for the rest of the procedure.
Now that she was settled, I left and went upstairs to where Michael was being prepared with the final procedures before transplant. Before transplant he had to have two doses of total body radiation to kill his immune system and one more dose of ATG - the rabbit antigen.
He was just heading downstairs for his first dose of TBI. They take what looks like a huge plexi glass box on wheels, made specifically for Michael. They put him in it and then proceed to pack his body with what looks like large flat ziplock bags full of play dough. They pack it around his whole body, except his head, leaving no air spaces, until the whole box is completely full and weighs about 700 lbs. He is then wheeled into the radiation room and for 7 minutes to each side, is exposed to radiation. They unpack him send him back upstairs wait six hours and then repeat the same procedure. Between, he is hooked up to the IV for the last dose of ATG.
Michael started the day very grogy, but as the day went on he became more coherent. After his last dose of radiation he wanted to go up and see Danielle.
Danielle is on the 4th floor in the Apharesis unit. She has a line with two ports. She is hooked through her line to a big machine that is taking her blood out of her body, through the first port, sending it through the machine to remove the stem cells and then return her blood to her through the second port. We got there close to 4:00pm. Danielle had been on the machine most of the day, and they had just determined that they had been able to harvest enough cells, so she was almost done.
Michael , Shaelynn, Sean and I were all there. Michael was tired and weak, but emotional at this moment. After they unhooked her from the machine and pulled out her line, Michael hugged her and cried, and then hugged all of the rest of us too.
We took Michael back to his room and Danielle back to the apartment. The actual transplant took about 30 minutes of IV. Michael doesn't even remember it. It is quite unspectacular, just a like a blood transfusion, with a lot more preparation required. It is an amazing miracle that can take life from one person and give it to another, so that through one person,two both can live.
But, This is not the end, it is just the beginning and it will be several months before we can truly celebrate what has happened on this day.

CVC lines and other complications

During the next few days Michael was very ill. His neck had swollen to 48 cm and his fever was running as high as 40 C. We called and asked my brothers David and Kevin Thompson if they would come and give him a blessing. We appreciated their visit and the strength and compassion that they brought. His doctors had determined that there was a blood clot wrapped around the CVC line, they were also concerned with infection as that can be life threatening in this situation as it will be blood borne making it much more difficult to treat. They started him on three different antibiotics as well as blood thinners. Within a day or so of Kevin and David's visit the swelling went down 7 cm in one day and his fevers stopped. We breathed a sigh of relief as he continued with a very difficult chemo protocol. One of the drugs that he was taking reduced his seizure threshold, and so saying affected a number of other medication that are normally used to treat chemo side effects. Michael's favored nausea drug happened to be on the list of can't take due to drug interactions, and as a result he started vomiting and could keep little down for about a week. They also used another drug to help keep him from having seizures, a possible side effect of one of the chemo drugs. Michael's response to this drug was interesting, and a little scary. He started hallucinating and then moved into being disoriented and unsure of where he was or what was happening, during that time the doctors were very concerned about his brain, not being sure of the exact cause of his symptoms, they worried about a clot, a bleed, or an infection in his brain. The rushed him down to receive an MRI of his brain to rule out any possible serious problems. Once that was done they determined that it was due to the Ativan. His liver enzymes were high at this time as well, and the liver is how this drug is excreted from the system. Three days before transplant they gave Michael something called ATG. It is an antigen made from rabbits that keeps his body from rejecting Danielle's cells. There is often a number of reactions to this, fever, allergic reactions etc. As a result they give Benadryl to reduce the problems associated with this drug. Fortunately for Michael he did not have any difficulty with the ATG, but the combination of Ativan and Benadryl was a little scary. At one point Michael had an EKG and when they left he was incoherent enough that he did not realize that his CVC line( which is inserted into his jugular vein) was not one of the EKG sensors and he pulled on it. Both Danielle and I gasped. When they checked it later it was bleeding and subsequently about two days later it just fell out.
During the time of his incoherence Michael said a couple of interesting things that made us wonder later how thin the veil might be for him in this state. He turned to Danielle at one point and asked her" What are all these people doing here?" She said that she didn't know and he turned to her and said "They are here to help you." He repeated the same thing to me. The interesting thing about that is that Michael remembers virtually nothing about that 4 days, except the people. HE described it similar to an experience his Great Grandpa Dean had while serving a mission, except he said there intent was good. He remembered one man in particular and described him to me as being about thirty and having hair a little longer than his brother Andrew's. I don't know the meaning of all things, but I do know that there has been a help from God distilled upon us to handle this challenge that I cannot describe, an feeling of hope, and love that we has carried us through so much emotion and pain.
Through all of the time that Michael has been sick he has been strong. This week he cried. He cried for the last three years of his life, for the not knowing, for how hard it has been to be sick and to watch his family suffer along with him. One day he said " There has always been a place where I put my sadness, but now it is full" There were a sweet moment when Michael started crying and my phone rang and I stepped out of the room and when I came back Danielle was laying on the bed nest to Michael holding him and stroking his hair while he cried. There were many tender moments that week that pulled at our heart string to see the pain that he has endured so bravely.

So, about this time Danielle came down to Calgary to prepare for donating her cells. This consists of taking injections of a medication, called GCSF, that stimulates her body to produce stem cells. The extra stem cells will spill out into her blood and they can be harvested through a transfusion like process that separates the stem cells from the rest of her blood. She gets the rest back and they keep the stem cells to give to Micheal. Now I have to say the difficult part of this for Danielle is that she has a phobia, beyond a phobia of needles. They had to put her under to start an IV on a simple surgery they did back in August. So fast forward to now and we have the GCSF injection every day from Saturday the 27 of March until Tuesday the 30. The side effects of the injections are bone pain headaches, fatigue, dizziness. She got them all. By every evening she was feeling really terrible and the side effects increased everyday. She was pretty anxious for the first injection, but got a little braver every time. We appreciated a friend of Danielle's, Sean Casey, who drove Danielle down to Calgary, as she could not drive on the medication. He was a God send and we are grateful for his kindess to our family during this time.

Mar - April - bone marrow transplant

Michael was admitted March 23. They gave him room 570 at the Tom Baker Cancer Centre and sent him to have a CVC line put in. It took about an hour and he got to be the subject of teaching someone else how to do it. I am never sure if that is good or bad, but it took a little longer than normal because they did. After that they let him go "home" for the day. Home at that point, seeing as we are in Calgary was Gary and Kerry Bennett's house. They have been kind enough to let us share their home. It was a wonderful warm place to land, though it was a bit far from the hospital. Michael has a number of limitations in terms of what he can safely experience, making it a little demanding trying to find places with no kids, or pets, a certain distance from the hospital. Bennetts are farther away than they would like us to be, but we are working of finding somewhere closer. The first few days were back and forth from the hospital, until Michael started having some unexpected problems with his line.
He developed some swelling, redness, fever and a very stiff and sore neck. They determined that a blood clot had developed around the CVC line. He was in pretty rough shape, vomiting, having trouble standing for dizziness. When all of this started we had just found an apartment closer to the hospital and Michael was looking forward to going there for the night, but needless to say both he and I stayed at the hospital that night.

Well, I decided that I must use the time I have sitting in this hospital room for something. I don't like using computers very much, but I have one here to stay connected to my family and friends. So, for whoever sake I thought I would write some of the experiences that we have had over the last month and our thoughts and feelings on it all. I have little else to do, so I will take that as a challenge to share some thoughts and feelings- not an easy thing for me to do.