A Long Time Coming

It has been a long time since I have posted something on this blog… I have decide to summarise some of what we have been through… There is so much more to this story.. yet if I was to explain it till I was blue in the face no one could truly understand it… so I will go with what I have written to a friend many months ago.. Plus a little more… I will be more diligent here now… As I feel it is a necessary thing for me to do... To update others and maybe to educate some as well … Aaron has written a book as you will learn later on… I think I will write about the experiences and what life lessons we have learned from them… Any way on with the story…

My husband (Aaron) had been feeling lethargic for a couple of years before being diagnosed. He kept telling me that I was so fit after our 2nd child was born because I was going out on walks with our next door neighbor pushing the heavy (old) pram up and down our very hilly neighborhood. He kept telling me that he was so unfit and out of shape. Aaron had just completed his Mechanical Engineering Degree and decided that he didn’t want to move to a rural area to use his qualifications. Not knowing the events that would follow… it just felt right. So he began working for an international company with a small branch based in Australia. He was Drafting for civil engineering. Around the same time our 2 children, Ethan (then 4 years old) and Izra, (2) had started Pre-School and child care. It seemed that Aaron kept catching whatever germ it was that they would bring home. (Just love it when the children share… it takes so much encouragement to get them to share their toys or other things of importance but when it come to germs they seem to share so FREELY!! Little Germs… opps I mean GEMS) The kids would have the snuffles for a day but Aaron would get really infected or knocked around. We also realized that every time we kissed he would wake up the next morning with a sore throat or a cold sore or something. So we stopped kissing on the lips. Until his immune system would strengthen. (It didn’t and is still obviously recovering after the BMT… nearly 2 years down the track…. We still don’t kiss on the lips….) Because of all the sickness Aaron had to have many sick days off here and there. He had something like 10 off in a row with one of the colds that he caught. It was so unlike him. This is a man who as a child had 100% attendance for Primary school and in High school he missed one day, because he attended his mother’s funeral service. So getting sick heaps was just not something that he did. He would break bones from his dangerous and young larrikin ways but would never have days off because of them. (His motto when he was young was… “Bones heal- Chicks dig Scars- Pain is temporary- Glory is Forever.” This is from the ‘Head First’ skateboarding video by Matt Hoffman. Aaron had also passed out one day and hit his head on our couch. He couldn’t understand why there were no real warning signs. He had several really weird things going on for quite a while. Like one night he got the shakes from a sinus infection. We asked our Dr friend to come over to check Aaron out and he couldn’t explain it. (Now that we have seen a full blown rigor we understand what caused the “shakes”.) The short 7 minute walk from the train station to work was proving to be difficult for Aaron, so he borrowed his brothers’ motor bike for about 6 weeks. After a full day at work he was exhausted. He would come home and sit on the couch and not move except to get up to the table to have dinner. I thought he was getting depressed. Even though he assured me he was not and that he LOVED his new job. He was so excited that his very active mind was finally being stimulated, after about 12 years of dead end jobs. I was noticing that at times he looked very pale. English skin I kept putting it down to. He would often feel light headed. His heart would pound in his chest and he would find it very difficult to catch his breath even with the slightest exertion. He had to give his brothers motorbike back and in the following 3 days he went downhill very rapidly. He noticed a huge black bruise on his inner thigh which we had no explanation for its mysterious appearance. I took him to our local GP. She took one look at him and said that he needed to have a blood collection. And she emphasized she wanted that done that day. She also wanted him to have X-rays done of his chest so she could check out his heart and lungs just to be sure, but it was really important that he had the Blood collection done that day. The next day I received a phone call from the Dr’s receptionist at ten to eight in the morning. The surgery opens at 8am so I was immediately suspicious, curious, scared, oddly excited and kind of pensive all at the same time. She would not tell me any information all she would say was that “Dr needs to see Aaron” and could she have his work phone number. I waited for an hour or more. I kept tiding up the house because I couldn’t think of anything else to do to pass the time. Every time I walked into the bathroom to tidy something up I kept looking at the mirror and asking, “Who is going to love me now?” Aaron went to the Dr’s and she told him worst case scenario was that he had leukemia. It could be a reaction to some of the reflux drugs that he had been on for the past 3 or so years or it could be that a virus triggered off this bizarre reaction in his body that the immune system was attacking his blood cells. She said that Aaron’s blood levels were so low he should not have been able to walk. She called the Ambulance and then she got him to call me to let me know what they had discussed. He wanted to come home and pick me up but as soon as he suggested that both the Dr and the Receptionist jumped on him and said “NO!” He could not hold back the tears and handed the phone to the Dr. She told me that with hemoglobin of 64 and platelets of 16 he should not be driving. Firstly because he should not be able to walk let alone drive, secondly if he was to have an accident with platelets so low or even bump himself he could bleed internally and die quite quickly. This was September the 28th 2005, a day I am sure both of us will never forget.
From there it took 3 weeks to get a definite diagnosis. They seemed to rule out leukemia in the first few days but gave us their suspicions of PNH or AA on Aarons’ 30th birthday. When they told us it could be a disease called Aplastic Anemia, we both immediately looked at each other and said simultaneously, “What.. That’s not even a real disease?!” Then I went on with ,”is that like A ‘Plastic’ Bag, Anemia?” Aaron was upset that after all his mechanical engineering studies he was now suffering from a disease which had no metal content at all!!! (As you might figure by now our way to deal with this whole situation from day one was to laugh… I believe this is our saving Grace! As well as our strong faith in the Lord) Anyway he had 10 days in hospital where they took more blood out of him than I thought they could, considering he was supposed to have none. He had a bone marrow aspirate, CT scans, X-rays and all the sort of tests that you would have if you were abducted by aliens. He had his first few red blood transfusion and platelets transfusions. We were able to go home after the 10 days of tests yet we had no real definite diagnosis. It was the first time we were told to, ”wait and see”. A fraise we have grown to…. Accept… for want of a better word to describe the feeling of distain, annoyance, anticipation and disbelief. Initially we were going back to the hospital about 3 days a week for at least the 2 weeks that followed. When we were given the definite diagnosis we were told all the options for treatment, Immune suppression treatment (ATG) or BMT. The Drs wanted to go down the ATG road because Aarons brother was not a match for BMT. But they would give us no dates for when this treatment would commence. So we hung in there for another week. Till I decided that we had “Waited and seen” enough. They had a diagnosis and a treatment regime that might help, yet we were just hanging in there… doing nothing… Initially we were told that Aaron might be able to go back to work in 6 to 8 weeks. (What a joke that is now! We have had a number of 6 to 8 weeks since then!! heheh) Anyway the Dr booked Aaron in for that Friday 2 days later to start his immune suppressive treatment. Then on the Monday they inserted the picc into his arm and gave him the first test dose of Horse ATG. He was okay for the first few hours then when I left to collect the children from school he had a huge reaction. A violent Rigor in which my lightweight (64kg) husband shook the bed and just about punched it through the wall. His Father and Brother were visiting at that time which was good because they now understood how sever the disease was. His brother didn’t contact us for about 3 weeks. It really unsettled him. I think a lot of it was guilt that he was not a BM match for his little brother too. Not that we would ever have bad feelings towards him for that.. but it is a normal reaction to some sort of grief I guess… We waited 3 months for the Horse ATG treatment to work. It did improve his blood slightly but he was having 2 to 4 red packed cell transfusions a week and 6 to 8 pooled platelet transfusions. It was not a big enough improvement.
So the next treatment was to try the Rabbit ATG. This was where my husband would prove that heaven was not ready for him! He was booked in to start his Rabbit ATG on our 9th wedding anniversary (1st Feb 2006) . He was administered his test dose of ATG by a male nurse with the name of Warren.. How ironic I thought? Warren gave him Rabbit ATG…. On the 2nd night of treatment he began to cough up some blood. Not too much to cause any huge alarm but enough to have some chest X-rays. He seemed to settle down by morning and so they went ahead with the third days dose of Rabbit ATG. All went well throughout the day…. But that night he proceeded to through up 3 and ½ liters of blood in 30 minutes. When the nurse came in and asked him if he was alright he showed her the bowl. She freaked and asked where that had come from and what was it? He said “I didn’t much like the taste of the blood transfusion you gave me today. I thought I would give it back. Can I have another flavor?” She was not amused to say the least. Then all bedlam broke loose. He had Doctors and Nurses running around. Many phone calls were made to all sorts of specialists at 1am in the morning. Many of them were called in. All of them looked at him in bewilderment. They could not believe that he was still alive. His heart stopped at least 4 times, his head was pressurized so much that it crushed his cortex, he had some paralysis on his left side of his body he blew many holes in his lungs. Because of the holes he could not breath and he kept coughing up blood. Also his O2 stats were falling so low that they rushed him to ICU because they were sure they would have to puncture his lungs to get the oxygen in. Even though his platelets were about 11 that morning, but with all the damage that had happened to his body he would have had a zero platelet count. The next day I found out just how close we were to losing him several times. He had 14 specialist come to see him that night and the next day. He had done so much damage to his lungs alone that the Lung Specialist said, “In my 30 odd years of being a lung specialist I have not seen someone do so much damage to their lungs so fast. I have terminal patients that have been coming to me for 25 years and they have not got as much damage to their lungs as you have to yours in one night.” Two days later the same specialist came in to see us and apologized for having Aaron go to x-ray two times that day. He was sure the first lot had been somehow messed up. He did not believe that they were of the same patients lungs. He then said, “They have miraculously repaired. You can hardly see any signs of the damage that was there 3 days ago.” He scratched his head and walked off… They decided that the rabbit ATG would have to be stopped. (PHEW!!) And over the next few weeks (another ‘wait and see’ moment) they decided that it was not successful and Aaron would have to have a BMT to try to cure his SAA.
We had checked the World BMT registry in the first few weeks of diagnosis because his brother was not a match and there were Over Seas donors in some countries that we had never heard of that might be a “possible” match. We were told to not get too excited about that because they may not be able to come through because in their countries it was very difficult for them to donate and they did have the option of saying no as well. The hospital went ahead and checked the registry again (6 or so months later) to see if anyone had recently signed up. We were so blessed there were 2 new registered people one female and one male and they both lived in Australia. We were given permission to be a little happy with this news but we were to still be very reserved because Aaron needed a full Allergenic BMT not stem cells but the actual 1 and ½ liters of Bone Marrow drawn from the donors’ hips. And as this was a rather uncomfortable procedure for a donor to undergo the Doctors prepared us for the possibilities’ of at least one of them turning the request down. The male donor was more than happy to donate. We had a few hiccups. He got sick and it was postponed for a couple of weeks then Aaron got RSV from our children and that postponed the BMT for 3 weeks… (more waiting and seeing) but all went ahead. He was due to have the BMT in the Easter Holidays (Again with the Rabbits… bad sign!!!) but with all the postponing he began May 13th 2006. Aaron was given too much radiation in the work up for the BMT treatment regime. He had more Horse ATG and he had chemotherapy. Everything seemed to be in really big doses and given to him really fast. We found that most of the treatment regime decisions were being made from Seattle. Because there are very few people who have had SAA in Australia and our medical experience here was very limited. Aaron had really bad sickness from all the treatment. He also contracted the Nora virus (vomiting and diarrhea) from another patient in the ward. He had huge ulcers in his mouth so much so that inside his mouth it looked like one huge pussy infection. Even on the roof of his mouth. He told me on the 3rd day that he felt like someone had shoved a hot wheels car up his bottom. From throwing up so violently caused from the chemo and the Nora virus Aaron blew the blood vessels in and around his eyes. He looked like he had gone a few rounds with a pro boxing champ. The whites of his eyes were so red that it looked like he had just come off the set of a vampire movie. His face and neck was so swollen from the overdose of Radiation he looked like a contestant from the ‘biggest Looser” before they lose the weight of course but his body was still long and skinny! He was retaining fluid like no ones business. In one night he gained 13kgs of fluid. Let’s just say it was not pleasant. He rejected the Bone Marrow Transplant at 100 days post BMT. In the few weeks that it took the Dr’s to figure out what was happening to him and how they would treat it he started writing about his experiences. I was excited to see that he was going to put into words and thoughts what it was that he was going through. He has written about 35 chapters so far! We would love to publish it because I think it would be inspirational to others. Even if it was just for our friends and family. Aaron rejected the Transplant again at 6 months. And then at the year mark he was having difficulty coming off of the steroids.. part of the anti rejection regime…. He is doing better now, about 15 months post BMT. He hasn’t needed a blood transfusion since about 6 weeks post BMT.. However because of the staggering amount of Blood transfusions he did have in 9 months.. (we work it out to be around the 600 mark) … he has a huge (and dangerous) iron levels around 3000 times the normal limit. Now he has to have monthly Venus sections to take out 550ml of blood each time. A Venus section is a really BIG needle… By bleeding him at least once a month it will hopefully dilute his iron levels over the next 2 to 4 years…. So eventually they might go back to a normal level.(waiting and seeing.. hopefully before it does permanent and further damage to his liver and kidney etc.)
That there is a large part of our story. It has been a long and hard road. Together we have gotten through. Never once did I ask “why me?” I did ask “why am I going through this again… what is it that I have not learned from my past experiences?” My mother was diagnosed with a brain tumor when I was 14. She died when I was 18. Aarons Nan had stomach cancer that killed her only a few months after it was diagnosed. Then my Father passed away with kidney cancer in January 2005. All of whom I nursed and went to Dr’s appointments with before they passed on. After three weeks of pondering and partitioning the Lord I received a really strong answer. ‘It is not what you have NOT learned. It is that you have been prepared for this. You have a family now and if you had not gone through all these other experiences you would not cope with what lies ahead.’ I am so grateful for the promptings of the spirit in my life and the strength that I have been able to draw from these experiences. I do sometimes get discouraged but I know that the Lord knows where we are at and what we need at all times.
Aaron has been going back to work for ½ a day once a week. This does wear him out though.. Just the getting ready and driving to work tends to tire him… We would also like eventually to publish his book. I myself have started to work on some children’s books that I thought might be fun to publish as well. WE are still waiting and seeing… It seems that it will be a long time yet.. We were sure that he would be a little further along coming up to the 18 month mark.. Alas it is not to be… meanwhile we are starting to do some things from home. We are helping others preserve their memories… by compiling family photos into home movies… We are fixing old photos… I am doing some floristry from home. Making some costume Jewellery… I have also signed up with a party plan company doing Card making and Scrapbooking. Aaron is helping a friend with his new business venture and he also is able to get some work to do at home from his employers… Who have stuck by him throughout this whole ordeal. What a blessing it is to have your position held open for you indefinitely… I know of no other company (especially in Australia) that would be so generous to do that… And there is no pressure to come back fast... Just as he is able to… We are truly blessed…. Because there would be no job that he could do for a few hours once a week…. If he was able to and well enough…. I mean really who would employ someone with the uncertainties that we face each day?