|I have not written in a long time, mostly because I couldn't face the pain of all the difficulties still happening. When we came home there was hope for a problem free recovery, but it has not been so. Shortly after we came home, Michael developed severe swelling in one of his testicles, which they attributed to an accumulation of leukemia cells. Feeling a little crushed here and uncertain what that means. Radiation, radiation burns.... with the hope that they got all the leukemia cells. Then his eyes and mouth developed some problems, severe mouth sores, red watering eyes, even bleeding from the eyes. The verdict GVHD. Back on the immunosupressants - cyclosporin and steroids- the word that we never want to hear. The worst of all the drugs, but what choice is there. Then his liver again not functioning the way it is supposed to. First assumption is Graft Vs Host disease, but after the steroids and cyclosporin still no improvement in the liver enzymes, so here goes another biopsy. The verdict Hemochromitosis - iron overload from all of the transfusions- causes liver damage, as well as heart, pancreas and kidney damage. That is the physical, but what of the rest of our souls in this journey. There has come a point where watching what others are doing in their seemingly normal lives is shocking and I just can't even process the seeming trivialities. It really hit all of the family - the stress and not being able to go on without being totally overwhelmed and not even being able to see how to act or what to do. Well, it became time to regroup and get some help. The problem was, or has been that to others the crisis is over, but we are just getting to a place where we can look at the emotions and the impact that this has had on our family and how we are functioning together.

Sweet Moments

With little drama happening I have taken a break from writing and just appreciated living a little more normally. I guess if living 3 hours away from your family in a hospital apartment is normal, but at least there have been less life and death events in the last two weeks.
So, the first time we saw Michael's actual doctor in clinic and we asked if we could go home for the weekend, she told us after he got sent home for good. That they didn't recommend that he go home at all until then. We felt a little let down, pondered it a little and decided that sanity was part of your health so we went home any way. We were able to spend the last two weekends at home. It has been soooo nice!!! But this week is a little different. The last two weeks Michael has been doing perfectly in terms of no new problems or really anything other than just getting stronger, however this week has throw a twist, not sure what to think of it. I think the doctors are thinking it may be osteonecrosis, since he had it last time he was sick, but it is looking a little different, severe pain in some of his joints. We may have to stick around here, since if it gets really bad and he needs immediate medical attention we would have to drive straight back to Calgary to get it. I guess we will see. He has felt a little discouraged, since it seemed to be going so well and then .... I can't even begin to process anything else going wrong.
I was wondering why when they test his blood, they are telling me that his blood counts, are for the most part normal now, why we have to be so concerned about him getting sick?? Clearly I am not a doctor. She kindly explained how Michael's immune system is less developed than a new baby's and may need help and protection for a while, even though his blood counts were normal there were lots of other parts to his immune system, and he had virtually been exposed to nothing, like a baby, so he would be susceptible to everything, because this immune system has never been exposed to anything. HE even has to get all his immunizations again. Well, now I know and will continue to be vigilant.
But on the lighter side he felt well enough to get out of this apartment today, even with his pain, and to go to my sister, Cindy's house, where we had great food,and great company, Grandma, Grandpa, Auntie DeAnna, Andrea, and Cindy's kids. That is what family is for. What a nice break from this sterile feeling apartment. Although it probably isn't all that sterile. It just feels like it, since the view from our 14 floor window looks right into the 5th floor of the hospital where Michael was staying. Sometimes, we can even see which nurses are on in the evening when it gets dark outside.
So, next Tuesday is a bone marrow biopsy, and if that is well we get to go home the following Tuesday.
As for the family at home. I think they have been held in the Lord's hand. I almost think that maybe they are doing better than if I had been home. Jim has done an amazing job. Shae's marks have shot up to honor roll status. Lindi is happy and more confident. It almost seems like maybe they don't need me after all. Well, I am grateful for small miracles, good people who have helped to make all of this easier at both ends and most of all the grace of the Lord that held us all and left us coming out of this better than we went in. That doesn't even sound like it should be what I am saying, but it is true. We have made amazing friends, both here and there, discovered how much our family means to us, both immediate and extended, discovered a confidence and strength we didn't know we, individually and collectively as a family had, and found a peace in what ever the moment brings. It seems amazing that something so hard could bring such goodness to us. Thank goodness the God controls everything cause if we had had a choice, I am pretty sure this would not been on our list of things I would really like to do this year. But I am grateful for all the goodness that came out of it and now I wouldn't change it, cause I wouldn't want to give all the sweet moments back with the hard ones.

What do you say when you just lost your friend?

Yesterday my friend Arlene called me to let me know her brother Michael had passed away. We cried. We had hoped and prayed for a different ending. I guess his body just got too tired. He passed away in his sleep peacefully. He had been suffering greatly. His family has become very dear to us. Our hearts will be forever linked to them and we will always love them and never forget who they are and the love, friendship and support that we have received from them.

On Thursday when we saw the doctor in clinic we asked him if we could go home for this fund raiser that Andrew had put together. He Said" If you go I didn't know about it!" He laughed at Michael and said,"It would be nice if you could be stable for more than 48 hours". He actually has been for over a week, so we went home on Saturday. Andrew put together a concert for Cancer, a fund raising event to make some money for the Alberta Cancer Foundation. They helped us with some of our expenses here in Calgary. It is hard for a young person to know what to do when something like this happens. There is a sense of helplessness, but he channeled that into something meaningful. He and Danielle played. Andrew's work provided baking for donations. Both of the kids put together CDs for sale for the cause. It was a great event. We had fun. Michael got a little tired and we had to take him home to rest. How proud I was of their efforts. He called me today to tell me they had made $750. He was pretty excited. Overall the trip home just made us more homesick. We really dragged out our leaving to come back, finally we decided we just better go before it got dark. SO here we are back in Calgary, anxiously waiting for Michael's appointment tomorrow to see when we can go home again.

Such a quiet week......

It seems strange after all the weeks of significant happenings, to sit here quietly not sure what to think. After we left the hospital on Tuesday Michael did not need to be back for anything until Thursday. He decided to join me at the gym on Wednesday and Thursday. It tired him out significantly, but in a good way. We walked to the river a few times and just sat and watched the water flow, funny how much things can change in such a short period of time. It is never expected, what happens, but somehow it is what is supposed to be. The friends we have met on unit 57, are also doing better, we stop by each day to see how they are doing. We hold onto every little thing, as I am sure they do, a hope for healing and going home again.
In the clinic yesterday Michael asked when he could go home and they said once he is stable for a week or so we could spend some time at home. For good???? Probably the end of June.
Still lots of medications, some he will need for a while, others they are lowering his doses regularly to none, by the time he goes home. Our naturopath, has also made him some remedies to help his body recover from some of the distress that it has been through. He has been very helpful every time Michael has been ill.
Other than that..... there is little going on. We wait quietly for the day we didn't think would come, for a long time, but now seems within reach....when we get to go home.

Finally GOOD NEWS!

So a quick update. They let Michael come home, A sudden turn for the better after the terrible week. We went to a parade, a barbecue, hung out with family, laughed and did not worry about doctors, blood tests, and hospitals on Monday. How wonderful! We were back on Tuesday for more tests and results, but Michael went in Tuesday morning and said I want out of here for good!!!! No one was arguing with that. He is booked to be seen in clinic as an outpatient on Thursday. He just wants to go all the way home now. That is his next wish. No apartment, in this windy city, but his own room back in Stony Plain. I second that. So tired of this very abnormal life. I have almost forgot how it works to worry about trivial things, sometimes I will go on Facebook, just so I can get reminded.

Huurah for false alarms!

Yesterday started as normal as any other day. I decided to bring Michael a popsicle, in hopes that it was maybe something he could get down, as the last couple of days have entailed severe nausea and vomiting. I noticed that Michael wasn't in his room, so I stopped to put his popsicle in the fridge and had a chance to stop and visit with a young couple, Tim and Krista I had met a few weeks earlier. They were sharing some of the resources that they had found helpful in the within alternative medicine, approved by a doctor that has provided strength and support to Tim at this time. I of course am and have always been interested in credible alternative medicine. I went back to Michael's room to find it still empty. He had gone for an MRI of his head; the doctors still trying to determine what happened on Wednesday. He returned in short order and was again not feeling well, nausea, and fatigue. The numbness that had characterized the episode on Wednesday returned. The doctors were close and got in right away, sent for the stroke team, but it resolved without affecting his speech. I was happy about that.....however about 5 minutes later his other side started going numb and this then continued until it affected his speech. It seem to resolve fairly quickly with about 10 minutes, except when the stroke doctor came it became apparent that Michael was getting quite confused and not able to execute normal ordinary requests. He would forget where he was and why he was here, and then remember a few minutes later. His nausea increased to severe and included regular vomiting for a good part of the rest of the day. He began to have severe head pain as well. At this point in time, they wanted to send him for and EEG, study of his brain waves, probably good timing as what ever was happening he was right in the middle of. He was crying and begging me to call someone to give him a blessing. I called David, as I know his schedule is usually flexible enough that he can get away if need be. He agreed to come, much to Michael's relief. Michael was also getting quite anxious as well. We headed down for the test. Whatever was happening...man the got the real picture....Michael was confused uncooperative crying, scared and couldn't stop moving. They are trying to get these electrodes hooked up to his head. They got one side down, with a lot of difficulty, but Michael refused to turn over and let her do the other side. The worst part was the technician was kind of an anxious person and Michael was pretty anxious himself and she just kept talking and talking and I am thinking "Stop talking and just do what you need to" Finally Michael says "Would you just stop talking!" It was a slightly amusing moment, but she couldn't stop, she tried I know she did, but her anxiety got the best of her. About this time DAvid showed up and we asked her nicely to leave so we could settle Michael down and give him a blessing. It took some coaxing, a little bit of physical help from David , but we finally got him turned. I pulled his blanket back so he could turn and he grabbed and said"Don't take my blanket" AT which time I told him that I would give it back when he turned over. HE was crying don't do this. I just need a moment. WE persisted and finally accomplished our mission, but the struggle was not over yet. Michael struggled to stay still and the electrodes kept falling off. The poor anxious technician was having trouble figuring out how to handle this. Finally her supervisor came in and took charge, told her what to do, got her started on the computer recording part of the EEG, while he tried to finish getting Michael set up, and calmed down. The funniest part of the whole thing was when he finally told her to be quiet. After all was said and done, they got what they needed much to my relief, and probably theirs as well. Later in the evening one of the nurses came with orders to draw more blood as the EEG came back with some abnormalities. I would hope so, cause his brain wasn't acting what looked like normal for certain!
He finally, after getting some gravol, on top of a couple of other anti- nausea meds started to settled and fell into a deep sleep.
Later the doctor comes in and tells us that Michael has a large clot 3cmx3cm in his heart. Being as I didn't understand the implications I waited before getting too worried, as they were running a number of other tests, including a cardiac MRI. They whisked him off here and there, took blood about 4 different times, started medication for the clot, stopped it, sent a cardiac specialist in. AT the end of the day, Michael's doctor came in to tell us the updated after all the tests, well turns out what they thought was a clot was not and so the seriousness of the situation changed very quickly. Of course they still do not know what is wrong, but all of the things that aren't wrong are the things that we don't want to be wrong. So at the end of the day. Michael ate three meals didn't throw up today, and doesn't have a blood clot in his heart. He is ready to get some sleep and work on getting out of here for good.

Held

There are no words for today, only tears for sorrow, suffering and lost hopes. But also comfort in the knowledge that we are held when all seems bigger than we can possibly understand. This is for my friends Pat, Arlene, Michael and their families. My heart has ached in your suffering and found joy in your friendship love and laughter.
http://www.youtube.com/watch?v=iOufqWodFNo
This is to my family, who has made sure that we are held and loved.
Thanks to David for always being there when we need him, blessing Michael staying, encouraging, listening, and telling the nurses exactly what needs to be done!. What a great friend and brother. How can a person do this without all of the emails, skpe calls, cards, visits, the most coveted blankets on unit 57, offers to shop and bring me dish soap! and so much more than I can list.
For today that saw so much suffering and yet so much love and comfort in the midst of it all. Thank you to my amazing husband holding down the fort without me, my amazing children who pray with faith and love for their brother and are not afraid to go on working, studying being all they can be, living life with faith and purpose. And thank you to Michael for his courage and faith when he has suffered so much, and still reaches out in love, concern and gratitude to others when his suffering is greatest. He even told the EKG technician that he loved her today when she had to leave because he was vomiting too much for her to do the test! There was a little confusion going on in the midst of that, but that is what he is like. Always worrying if I am OK when he has been suffering the most.

Where's House when you need him????

Here on the bone marrow transplant unit, there are no normal days. Everything here is serious and they move fast when something presents itself. So yesterday Michael and I go for a little walk around the unit, but he wasn't feeling to good, so we headed back after a lap. Back at the room, he started vomiting, .....OK so that has become kind of normal. I didn't think too much of it, but a minute later his nurse was in checking vital signs and stuff and he announced that his right arm was going numb, kind of weird.....She started asking a bunch of question, checking, checking to rule out anything serious. She left and about 2 minutes later he started slurring his words and having trouble talking. Well, I know enough to know that all of those together are signs of a stroke, so I dashed out and grabbed his nurse, in about two minutes we had 4 nurses and 3 doctors, a ct scan of his head booked, the stroke and neurology team notified and within another 5 one of the neurology team had appeared. They raced around for a couple of hours running tests and comparing notes, only to decide they didn't know why he had what looked like a stroke. So, the quest for answers begins. More tests today and tomorrow until they uncover the mystery. Heart tests, blood tests, EKG, echocardiogram. Within half an hour of the original problem it disappeared, he was talking normally and had only a little right side weakness and facial drop, which disappeared with in an hour. His nurse said today as she was running more tests, "We need House to help figure this out."

See, House always figures it out and the patients always make it, but not here. The man in the room next door to us, we have gotten to know his wife, mother, and mother-in-law. Today I saw, his wife's mom standing outside the door looking pretty defeated. I stopped and asked if she was ok and how Terry was. She started to cry and told me that he had developed graft vs host disease so bad that the doctors had told them there was only one more medication they had, and if that didn't work he probably wouldn't make it. I said to her " I am so sorry." and she looked at me and said "I know you are" We hugged and she cried and went back in to face the real life drama that there was no House to come and fix. I ran into his wife on my way down stairs and she cried and said she just wanted to go home where he could be with his kids for his last days. Well, what do you say? There are no words. I just hugged her for a moment.
The thing is we have the best transplant doctor in all of Canada, heading the transplant team here. I know when he comes in to see Michael I feel like he can do anything. I know that he can't cause he tells us when he doesn't know, but he is gifted, dedicated and amazing. The nurses that work on this unit are nothing less than the best in their field as well. As guess that's as close to House as we are going to get.

The last few days have been appearing to be positive. Our ward and some of our family had a fast for Michael on Sunday. When I came in on Sunday I was surprised at the significant improvement in his condition. So far as of today, he has lost 14 kg of fluid. His sleeping is better. His movement is better. He is feeling a little worse today, nausea and vomiting, but still an overall improvement. He has been eating better, save this morning. We are hopeful that he will continue without any further setbacks, but we also know from watching others on this unit that is not always the case. We trust the Lord will give us the strength and ability to weather all that is in store for us.
ON Saturday I was feeling a little tired and overwhelmed. There had been a few too many visitors and some were more challenging than others to have around. By the time they left I just wanted to go home and have a break from all of this. I commented to Michael and Danielle that I wanted to go home, and probably could have in terms of Michael's care he was in the hospital and the nurses were taking care of what he physically needed, but he was having a hard time emotionally. He was feeling tired of being sick, exhausted, in pain and just overall discouraged. He started to cry because it was all too much and then a few minutes later told me it was ok if I left. But, I knew that it wasn't really ok. He really wasn't feeling strong enough to do this on his own. I told him that I wasn't leaving him to handle this on his own. He looked relieved and then offered to give me a blessing. I took him up on his offer and it was a very sweet experience for us both. He wept as he blessed me and promised me that the Lord's spirit would be with my family as I could not be, he promised me strength and we were both edified. How sweet the blessings of the Lord have been to us at this time.

Time and music

Well, I have come to the conclusion that things can go bad very quickly, but they take a lot more to heal. The last few days Michael's body has still continued to retain more fluid, until today, his weight decreased this morning. They have felt that the measure of how well his liver was doing was to be found in how well his kidneys are doing. They have been able to give him diuretics to help reduce the fluid, but the amount depended directly on his creatin levels, kidney function indicators. They have gone down to a normal level, which has allowed the doctors to try and help his body get rid of some of the fluid. He is able to eat small amounts, I think mostly at the threat of a feeding tube. They tried to put one in a few days ago and it was a dismal failure and he was really upset and very motivated to try and eat. Because of the extra fluid it is difficult volume wise for him to put much in his stomach, as well as the fact that he has hardly eaten for over 40 days. He is managing to get a little in each meal. The doctors and nurses are amazed with his determination to get up, to walk, to eat and to generally fight to get better. Even though he is tired and it takes so much effort to get up he sets goals for himself as to how many laps around the unit he will walk every day. Sometimes he gets tired and sad and cries because he just doesn't want it to be so hard and to hurt so much, but somehow there is always someone here to give him a blessing or some comfort when he needs it so that he can keep trying.
Yesterday his fiancee, her brothers and Danielle came to visit him. We sat out in the lounge and Danielle sang for us and a few other people who came to enjoy the music. It was a moment where all of the difficulty seemed to disappear for a moment as they sat holding hands and we just listened and talked.

Well, the doctor and the results did come. They are telling us that what is happening, is related to transplant and a lot of chemotherapy. IT is not really common, but is serious. IT is called veno occlusive disease. His body continues to retain fluid, making it difficult to breathe at times, due to pressure on his lungs, as well as difficult to eat. When the liver is stressed, the kidneys respond by not working too, hence the fluid build up. His weight has gone up about 40 pounds in the last week and a half. IT is a lot of fluid. Most is in his abdomen, but it is also through his hands, arms, legs and feet. They have done ultrasound on his arms and legs each in the past few days looking for clots because of the abnormality of some of the swelling. One of his hands is so swollen it looks like he has a mitten on under his skin. On the bright side his pain is improving and he is trying to eat a little. That is difficult just due to the sheer pressure on his stomach. The doctors are happy with the direction that his blood tests are going. With the concern about clots they doubled the medication they were giving him for his liver. The place on his neck that had the clot was quite swollen last night, but much improved today. Hopefully we can read into that, that the rest of his problems will begin to improve.

Waiting and wondering

Each day has come a little closer to a diagnosis. We are hoping today it will be definitive. Last week he was admitted with pain in his shoulders, chest and back, there was a gradual shift to pain in the belly accompanied by an overall swelling and difficulty with normal function, like bowel and bladder. Wednesday they removed about a litre of fluid from his abdomen. It was a relief for him, but it was soon replaced by as much as they took off. They have determined the problem is his liver, what specifically is happening there we hope they have determined by a liver biopsy they did yesterday.

Up and down, and stories that make you smile

Each day seems to bring something to be relieved about and something to be concerned about. So, yesterday and today saw improvement in blood counts, kidney function, a rise in liver enzymes( not good), then a decrease in liver enzymes(good), fluid in his lungs and a concern about his bowel. More tests and waiting. Better pain management. Difficulty eating due to whatever is wrong in his bowel. Maybe we will have some results of the tests tomorrow. Busulfan, a chemotherapy drug used earlier in his treatment, has a burning side effect. They initially explained it as darkening of the skin, like you spent three weeks in Mexico. The only problem with that explanation is they didn't tell you it is like three weeks, next to the water, with day and night sun exposure and no sun screen. Michael has a number of places on his body, his armpits, neck, scattered spots on his arms, and his groin(which has improved markedly in the last few week) which look like and feel like they have been scalded, probably second degree. It was hard for me today to help him take off his shirt and using some special wipes for such as this to sponge bathe his upper body, slather it with cream and then get his shirt back on. He is resting a lot and not eating much. We look at every day with the promise of tomorrow. We think that overall his progress is good. His counts are moving in a positive direction. He isn't running a fever. We are worried about his lungs
I talked to my family back home earlier. Shae seemed sad. I told her about some of the people that I had met. A man who just got told there was nothing left the doctors could do for his wife. A girl I met on the elevator who was crying. I asked her if she was all right and put my arms around her a gave her a hug. She melted into me like I was her mom, then got off the elevator at her floor and I continued up to mine. We talked about our favourite book: Once Upon a Marigold, and how much we loved the main characte, Christiain, because despite all the terrible things that happen he is driven by love, optimism and the need to live authentically from his heart. And of course it ends happily ever after. IT is the kind of book that more people should write and more people should read. I think I need to find another book like that one. It is the best remedy for a bad day.
I think that Shae was feeling better when we finished talking. I was.
Well, I guess we will see what tomorrow holds

Narcotics and uncertainty

All week there have been test and more test and lots of uncertainly. It started with the pain in Michael's shoulders,chest and back, which led to lots of tests, none of which were conclusive about anything. We have run into a couple of problems: The pain, and the blood counts.
The pain. When we got here Monday night they started an IV, since his CV line had fallen out and they had to pull his PIC line. Thye got some pain medication happening, but during the day it became obvious that it wasn't controlling his pain very well and by evening he was crying almost every hour and a half when his pain meds would run out. Unfortunately the nurse caring for him had her own opinions about his need for pain meds and would just not come when he called crying for medication sometimes making him wait an hour in pain. At one point she told us that " you aren't really in that much pain". We were both getting a little distressed and frustrated. About that time David came up to give Michael a blessing and saw what was going on. He stayed here and helped me advocate for appropriate pain control for Michael. Thank goodness for BIG brothers!!! :) How I appreciated his physically and emotionally present stature at the nurses station that night!! After some time they ordered what is called a patient controlled analgesic, or pca, that allows the patient to dose himself up to a certain point when needed. The only problem is that they set the dosage to low and so the same problem continued until about 5:00am the next morning when a compassionate nurse finally turned up the dosage and he was able to rest without pain for a while.
That was good and he appeared to be doing well for a couple of days, until they decided to change his pain meds to get him off the IV. The drug they used was long acting and the day he was on it and the day after they took him off he was so high he was making little sense and seemed confused, disoriented, and easily overwhelmed. His coherency is finally returning. The pain is still there, sometimes pain control is working and sometimes it needs to be tweaked, but it is better than when we started. The doctors in checking the pain determined that it seemed to be radiating from his abdomen. It seems with all the narcotics that his bowels were not functioning very well. We had hoped that if they got that working that his pain would go away. It has not.
The counts. They were looking really good, but just before he was admitted his platlets started falling. He was also on blood thinners, from the clot in his neck, so this had begun to pose a bleeding problem. One night he got a small cut on his arm, which bled for 8 hours through everything on his bed, even the mattress cover. They are unsure why his platlets are falling, so more tests. Now his hemoglobin has been dropping and his creatin (which has to do with kidney function) has increased to about twice what it ought to be. He has developed quite a bit of swelling and more pain. So we wait and watch to see how he responds to removing all of the medications that could be creating any negative effect on his kidneys.
After all of this uncertainly, watching and waiting, I have to say that I still feel blessed for each day that we have. I have gotten to know a few people up here and I hear about things like kidney failure, liver failure, severe GVHD, ICU . One of the families that I met up here,the mother has the same thing as Michael, been here in the hospital since January and has just been moved into pallative care. She got an infection and I guess they don't think she will make it. They have a two year old. Michael is free from infection right now. What a great blessing. He is tired of the pain, tired of being sick and he cries because he just wants to get better. This is the longest continuous treatment and the hardest of any that he has had so far. We are grateful for the prayers, comments, email, cards, calls and thoughts that are sent our way.
We have learned more about ourselves, God and the good people in our families and circle of influence than we we would ever experienced any other way.

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.