We were both so disappointed to have it definitely confirmed on the 31st of December 2007 that Aaron was rejecting the transplant yet again... It seems every time he tries to get ahead he takes 15,000,000 steps back!!! He's had huge ulcers slowly getting worse so that they now are covering his entire mouth... The inside of his cheeks are white and pussy looking... He has shown me once but does not wish to worry me so he has not shown me for at least 3 weeks now. The stomach & intestine is guaranteed to be 10 times worse than the mouth... He has had such huge stomach pain... When he eats things at times he has to spit out the skin that just falls off from the inside of his mouth. He said to me the other morning that his organs felt like they were liquefied and all pooling round his back as he was lying in the bed... There is just so little joy in life at the moment... He complains so little... It really amazes me!!! He doesn’t think he is brave or patient... but i know he is... He finds it hard to deal with the kids at times because he is in such pain... The littlest things they do tips him over the edge... He does try.. I worry for the kids... Ethan is on the verge of tears all the time.. & Izra is just starting to chuck massive wobblies... Yelling so loud at Dad... Being very defiant especially towards him. And the aggressiveness is BAD!!! What can you do?... Just keep plodding along... Hoping for a brighter tomorrow...
Ethan asked me today if this year (2008) would be better than last... we really did have a hard year... (along with so many others) Especially towards the end! All I could say was, "I hope so".
When Aaron hit that 18 month mark; as he was told by the Dr's... he should be able to go back to work at least 2 to 3 days a week... and he was still struggling with going for 1/2 a day once a week.. Well he's spirits plummeted... We no longer laugh as much as we used to... (He has the best pout! I reccon he could pull his bottom lip up over his body and use it for a sleeping bag!!!)
Something that Aaron did to lift his spirits this week was....He purchased a steering wheel to play PC games... that should give him some entertainment... & a bit of a boost for a little while...
Friday, January 18, 2008
Newsletter from the ....Aplastic Anemia & MDS International Foundation, Inc.
http://www.newsweek.com/id/91663
This is an Email I sent to ask the AA & MDS organization … if we can get in contact with Mark… after reading his article… Aaron and I loved his frankness and kind of ironic way of writing. We thought that being in contact with him might be a good thing.. It could help with the way Aaron is feeling at the moment.. very disheartened… Little to look forward to.. No bench marks to achieve… as all times he has tried to reach them his body has rejected the BMT transplant… There are times when he has said, “how much pain does one need to go through till they have had enough?” “I really hope that I don’t wake up in the morning.” “I’ve had enough!” “I’m giving up now.” Perhaps that is just what he needs.. to get in contact with another who is in the same peculiar situation…. We will see how it all goes…
Hi Beth,
I just wanted to let you know that I am grateful for the efforts you guys put into AAMDS!!! It is great to read things that are in the workings etc.. so my husband and I (although in Australia) can keep a look out for...
I just received the latest newsletter about "My Turn" essay by Mark Schreiber,... I was impressed by his article... It made me feel like he really would understand what my husband is going through... I was wondering if my husband could get in touch with him.. cause he sounds like he would really get along with my husband... He writes down to earth.. and kind of ironically..
My husband often feels very alone!!! He knows no one understands much of what he has gone through... It would be really uplifting for him to talk to someone who has felt the same.. who is older and may have a better recollection of what they (as individuals/patients) go through...It's really hard to find people who have gone through something similar... Mostly because SAA patients are so few and far between and also you are not 'allowed' to know medical details of others so you can't even ask if you can be put in contact with someone in Australia that might have SAA... He is quite discouraged at this time as it has been over 2 years since diagnosis and over 18 months after Alo BMT... He was told he should be back at work one to 2 days at least at the 18 month mark.. and now it seems like that may just be a dream... he often tells me that he feels worse now (post BMT) than when he was blood transfusion dependant!!! he had hem levels ranging from 58 - 85 and platelet levels that would zero out frequently... now his platelet levels are round 120... (normal) and his Hmg is round the 100 -130ish... And it's hard for even the Dr's to understand the symptoms and feelings associated with the disease... let alone all the friends who we try to explain things to.. He is rejecting the BMT for the 6th time at the moment... and is very disheartened.. you know he's like on the roller coaster… up there for a bit but drops fast.... and gets back up slowly...with a lot of pulling... I just thought that perhaps it would be good for him if he could make contact with someone who fully understands...
It would be lovely if this was possible...
Thanks again… Ursula James
Monday, July 02, 2007
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?
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?
Thursday, June 01, 2006
Hospital wears you out!
Tuesday 1st November
Well another new month… Aaron went to the hospital yesterday and he was booked in for “fast track”… which we really knew nothing about… all it is; is that he can get his bloods taken in “Day Care” and then he goes in the waiting area to see a Dr to report on his ‘progress’… Only we were a little confused by it all and called in the morning to see if we had to go to “Day Care” or down to the pathology to have his blood taken for all the tests they have to do…. And we were told that we had to go to pathology… so we arrived there at 8.30am one hour before his first appointment… and waited about an hour to get his blood taken then we went upstairs to wait over 2 and ½ hours to see the Dr… Both Aaron and I were waisted… We found out that his haemoglobin had come down a little since last Thursday and his platelets were 34… which is good for someone that had >10 for 4 days running… mind you they should be a little higher as he did have 3 platelet transfusions (each 4 unit bags) before he came home… we went to day care to get Aarons dressing on his pick line changed…. And they informed us that what we had been told was wrong… that next time we are booked in for fast track we do not have to go to pathology to have bloods taken that they do it there and they change his dressings and flush the lines at the same time… ah the things you learn when you actually talk to the right people!!! When the nurse took off Aarons old dressing you could see that it must have taken off a layer of his skin too… as it was red raw… he had been complaining that it felt itchy for at least 5 or 6 days now… The nurse said that some people have reactions to that type of dressing…. Then she had to clean the area with alcohol… boy did that make Aaron jump!!! It really must have burned because his arm just about flung across the room!!! Now we know for next time he needs to not get the orange dressing… we finished all this at 12.45pm… so we went to the cafeteria to have some lunch as Aaron had to go to another appointment by 2pm, in infectious diseases to have the nebulised treatment for a resistance to germs and colds etc… I left him there and went to pick up Izra from Jackie’s and then to get Ethan from school… then back to the hospital to pick up Aaron… by 3.45pm….
We got home and we were both worn out!!! Aaron and I had to have a lie down… it had suddenly hit me that I really didn’t feel well either… I had a huge head ache and the little tickle in my throat that I had felt in the morning was now a raw feeling… also I had a huge pain in the side of my neck and when I rubbed it I discovered that I had a swollen gland!!! So I made up the spare bed and shut myself away there…. I called the after hours Dr and waited for them… I also sent a text message (against Aarons protesting) to Lisa to see if she could give Aaron a hand with putting the kids to bed… I had managed to put on some crumbed veal and chips for dinner… not really healthy but it will fill a hole… I was a bit… well no actually a lot worried about passing on my germs to Aaron… and still am!!! The Dr came and I have infected sinuses and thickness in my left ear… and a swollen gland in my neck on the left side… so he has given me a course of antibiotics (duo fort) to settle it down… I’m really glad that Lisa was here as she was able to go out and get the medication right away… I was not in any condition to be driving the car!!! The boys and I went to bed went the Dr left at 6.45pm…
Today Aaron had a sore stomach and chest and his left ear was hurting… I’m so worried that I will infect him… His temperature has been fine today… so it’s not an infection …yet… we hope… everywhere we go we have a can of “Glen 20” to spray where hands might have spread germs… the boys are liking being able to spray stuff without getting in trouble for going overboard… we figure it’s better to go overboard than not do it at all…. Both Aaron and I slept today till almost lunch time in hope that we would recover sooner… me in the spare room and him in our room…
He had a bath today but we think the hot water is not good for him… as he was quite dizzy!!! He wouldn’t call me to help him as I am sick too and he doesn’t want to be a burden… What to do with two stubborn mules???? I have had a scarf around my nose and mouth for most of the day so I don’t breathe any germs on him… as we watched a movie this afternoon and I had to go into the bed room to type up this journal thing….
I thought today that if I prepare food with the scarf on and rubber gloves I should be able to avoid transferring germs to his food…. So I will try that tomorrow… fingers crossed… Hope it does work… Don’t like to see him sicker than he already is… And besides the whole hospital thing is over rated!!! The travelling time the parking and money that it cost to park… the taking or not taking the kids.. very wearing!!! No wonder why I am sick…. It has all caught up with me…
Mum R and Shirley called today to see how we were doing… Granny also called she is worried… and she was not feeling well today either… she really needs to go out and get some bread etc I wish I was feeling better I could take her out and help her!!!… Les came over and mowed our lawn today too… Melanie brought some tuna mornay over for dinner…. I had just come home from getting new tyres on the care and picking up Izra… I jumped up and was on adrenaline when she came in because Izra opened the door to her… I didn’t look sick at all I don’t think… well not compared to last night!!! Not that she saw me last night… but sometimes I feel guilty that I have to ask for help… I feel like such a burden to people!!! Like yeah sure I can do things all by myself… it’s that dam independent streak in me… but I feel like I have to justify myself or prove to people that I really am in dire need…. What is it with that? Will I ever get over that?
I just had a thought… that I haven’t really shared very much of myself with this ward… maybe that is why I feel a little like I burden people… perhaps that is something that is a little selfish on my part… All the other wards I have been in I have born my testimony a lot and people have known my heart and thoughts and that I have a testimony… so here’s a challenge… this Sunday I think I need to bare my testimony… I need to repent… I need to open up a little and not be so guarded… and forget about crying and being upset etc… ( I did bare my teatimony and it felt good)
Well another new month… Aaron went to the hospital yesterday and he was booked in for “fast track”… which we really knew nothing about… all it is; is that he can get his bloods taken in “Day Care” and then he goes in the waiting area to see a Dr to report on his ‘progress’… Only we were a little confused by it all and called in the morning to see if we had to go to “Day Care” or down to the pathology to have his blood taken for all the tests they have to do…. And we were told that we had to go to pathology… so we arrived there at 8.30am one hour before his first appointment… and waited about an hour to get his blood taken then we went upstairs to wait over 2 and ½ hours to see the Dr… Both Aaron and I were waisted… We found out that his haemoglobin had come down a little since last Thursday and his platelets were 34… which is good for someone that had >10 for 4 days running… mind you they should be a little higher as he did have 3 platelet transfusions (each 4 unit bags) before he came home… we went to day care to get Aarons dressing on his pick line changed…. And they informed us that what we had been told was wrong… that next time we are booked in for fast track we do not have to go to pathology to have bloods taken that they do it there and they change his dressings and flush the lines at the same time… ah the things you learn when you actually talk to the right people!!! When the nurse took off Aarons old dressing you could see that it must have taken off a layer of his skin too… as it was red raw… he had been complaining that it felt itchy for at least 5 or 6 days now… The nurse said that some people have reactions to that type of dressing…. Then she had to clean the area with alcohol… boy did that make Aaron jump!!! It really must have burned because his arm just about flung across the room!!! Now we know for next time he needs to not get the orange dressing… we finished all this at 12.45pm… so we went to the cafeteria to have some lunch as Aaron had to go to another appointment by 2pm, in infectious diseases to have the nebulised treatment for a resistance to germs and colds etc… I left him there and went to pick up Izra from Jackie’s and then to get Ethan from school… then back to the hospital to pick up Aaron… by 3.45pm….
We got home and we were both worn out!!! Aaron and I had to have a lie down… it had suddenly hit me that I really didn’t feel well either… I had a huge head ache and the little tickle in my throat that I had felt in the morning was now a raw feeling… also I had a huge pain in the side of my neck and when I rubbed it I discovered that I had a swollen gland!!! So I made up the spare bed and shut myself away there…. I called the after hours Dr and waited for them… I also sent a text message (against Aarons protesting) to Lisa to see if she could give Aaron a hand with putting the kids to bed… I had managed to put on some crumbed veal and chips for dinner… not really healthy but it will fill a hole… I was a bit… well no actually a lot worried about passing on my germs to Aaron… and still am!!! The Dr came and I have infected sinuses and thickness in my left ear… and a swollen gland in my neck on the left side… so he has given me a course of antibiotics (duo fort) to settle it down… I’m really glad that Lisa was here as she was able to go out and get the medication right away… I was not in any condition to be driving the car!!! The boys and I went to bed went the Dr left at 6.45pm…
Today Aaron had a sore stomach and chest and his left ear was hurting… I’m so worried that I will infect him… His temperature has been fine today… so it’s not an infection …yet… we hope… everywhere we go we have a can of “Glen 20” to spray where hands might have spread germs… the boys are liking being able to spray stuff without getting in trouble for going overboard… we figure it’s better to go overboard than not do it at all…. Both Aaron and I slept today till almost lunch time in hope that we would recover sooner… me in the spare room and him in our room…
He had a bath today but we think the hot water is not good for him… as he was quite dizzy!!! He wouldn’t call me to help him as I am sick too and he doesn’t want to be a burden… What to do with two stubborn mules???? I have had a scarf around my nose and mouth for most of the day so I don’t breathe any germs on him… as we watched a movie this afternoon and I had to go into the bed room to type up this journal thing….
I thought today that if I prepare food with the scarf on and rubber gloves I should be able to avoid transferring germs to his food…. So I will try that tomorrow… fingers crossed… Hope it does work… Don’t like to see him sicker than he already is… And besides the whole hospital thing is over rated!!! The travelling time the parking and money that it cost to park… the taking or not taking the kids.. very wearing!!! No wonder why I am sick…. It has all caught up with me…
Mum R and Shirley called today to see how we were doing… Granny also called she is worried… and she was not feeling well today either… she really needs to go out and get some bread etc I wish I was feeling better I could take her out and help her!!!… Les came over and mowed our lawn today too… Melanie brought some tuna mornay over for dinner…. I had just come home from getting new tyres on the care and picking up Izra… I jumped up and was on adrenaline when she came in because Izra opened the door to her… I didn’t look sick at all I don’t think… well not compared to last night!!! Not that she saw me last night… but sometimes I feel guilty that I have to ask for help… I feel like such a burden to people!!! Like yeah sure I can do things all by myself… it’s that dam independent streak in me… but I feel like I have to justify myself or prove to people that I really am in dire need…. What is it with that? Will I ever get over that?
I just had a thought… that I haven’t really shared very much of myself with this ward… maybe that is why I feel a little like I burden people… perhaps that is something that is a little selfish on my part… All the other wards I have been in I have born my testimony a lot and people have known my heart and thoughts and that I have a testimony… so here’s a challenge… this Sunday I think I need to bare my testimony… I need to repent… I need to open up a little and not be so guarded… and forget about crying and being upset etc… ( I did bare my teatimony and it felt good)
Home Again
Friday 28th Oct
Aaron received an administration from Ray.. As he felt he needed another one because he had not had one since he was first admitted to hospital, and that blessing was to give him comfort that the Drs would be able to help him know what was wrong with him…. When I asked Aaron about the blessing he couldn’t remember too much of it… He said that he could remember that it was said that this is a trial of mortality... and he remembers "get better" multiple times... I asked him if that was a command or if it was a promise... he's not sure... wish I was there for it..!!!
This morning I had to take the boys to the Dr’s as Ethan has had a cough for at least 4 days and now Izra woke this morning with a really bad cough… sounding much like croup!!! Our usual GP was away so I had to go through everything with a new Dr… very frustrating… then there was this really old man in the car park that was stopped a little way over the wrong side of the road… I should have listened to the little voice in my head (the spirit) that told me to go the other way… but stubborn me thought no he’s been there for at least 10 mins he should move soon… so I moved towards him and waved him on to encourage him to move out of the middle of the two lanes… and he looked like he was moving but then he stopped… I didn’t think fast enough and I ended up running the back panel of our car along a concrete pillar!!! Man I was so upset… I cried… then I thought why me… why does this have to happen to me… then how stupid to think that I could go through the gap… etc etc…
I went to 4 chemists today to get a print out of all the scripts that we had gotten in the year… as we might be eligible to have scripts for free or something if we have 52 scripts all together for the year… the boys were being BOYS… driving me mad with their jumping and touching and ants in their pants etc… I thought it would be a good idea to take them to Ikea to get some things for Aaron now that he is home… I wanted to get him a lock up medicine cabinet for his drugs because if the boys take them it will make them very sick!!! And I wanted to get him a little side table thing so that he could put all his things on there that he need so regularly… I found a table for the shed to put the sewing machines on … man was that a mistake trying to get that with 2 really active boys!!! Words do not begin to describe the anger frustration I was feeling etc etc…
When I came home Aaron was a little funny… he felt like he was wasting time sitting around... Like he wants to get back to work... Like it is unfair that the boys can’t do certain things because he is home and the boys are sick and they can’t be around Aaron while thy have a cough... We keep yelling at them to “go away” or “stay away from Daddy”. It’s all a little confusing for every one of us!
Aaron received an administration from Ray.. As he felt he needed another one because he had not had one since he was first admitted to hospital, and that blessing was to give him comfort that the Drs would be able to help him know what was wrong with him…. When I asked Aaron about the blessing he couldn’t remember too much of it… He said that he could remember that it was said that this is a trial of mortality... and he remembers "get better" multiple times... I asked him if that was a command or if it was a promise... he's not sure... wish I was there for it..!!!
This morning I had to take the boys to the Dr’s as Ethan has had a cough for at least 4 days and now Izra woke this morning with a really bad cough… sounding much like croup!!! Our usual GP was away so I had to go through everything with a new Dr… very frustrating… then there was this really old man in the car park that was stopped a little way over the wrong side of the road… I should have listened to the little voice in my head (the spirit) that told me to go the other way… but stubborn me thought no he’s been there for at least 10 mins he should move soon… so I moved towards him and waved him on to encourage him to move out of the middle of the two lanes… and he looked like he was moving but then he stopped… I didn’t think fast enough and I ended up running the back panel of our car along a concrete pillar!!! Man I was so upset… I cried… then I thought why me… why does this have to happen to me… then how stupid to think that I could go through the gap… etc etc…
I went to 4 chemists today to get a print out of all the scripts that we had gotten in the year… as we might be eligible to have scripts for free or something if we have 52 scripts all together for the year… the boys were being BOYS… driving me mad with their jumping and touching and ants in their pants etc… I thought it would be a good idea to take them to Ikea to get some things for Aaron now that he is home… I wanted to get him a lock up medicine cabinet for his drugs because if the boys take them it will make them very sick!!! And I wanted to get him a little side table thing so that he could put all his things on there that he need so regularly… I found a table for the shed to put the sewing machines on … man was that a mistake trying to get that with 2 really active boys!!! Words do not begin to describe the anger frustration I was feeling etc etc…
When I came home Aaron was a little funny… he felt like he was wasting time sitting around... Like he wants to get back to work... Like it is unfair that the boys can’t do certain things because he is home and the boys are sick and they can’t be around Aaron while thy have a cough... We keep yelling at them to “go away” or “stay away from Daddy”. It’s all a little confusing for every one of us!
Wednesday, May 17, 2006
2nd Week 21st-27th of October
Friday 21st Oct
Today was okay… he was so much more chirpy and awake this morning… it’s amazing what at little bit of blood will do to someone… I had a much better day knowing that he was feeling better… The treatment went really well and he had the first 2Ltrs of Atgam running at 400… then the last 1/2ltr at 166 and then cranked up again…
Visitors….Ursula, Lisa and Anna,
Baby sitters…. Kids at kindy and after school care
Dad called last night from his holiday to ask how Aaron was
Ursula’s Diary…… I felt I needed to get dressed up today plus I had my new tops to wear.. so I straightened my hair (not that you could tell after 1 hour in the humidity of the day) and put on a little makeup.. I felt a whole lot better… I was gearing myself up for a good day… as yesterday had been so bad!!!
Saturday 22nd Oct
Platelets are really low and have been for the past few days… Dr’s concerned about it.. but not really willing to do much about it till Monday when the ‘team’ of haematologists are back… Aaron asked about his reflux drugs… Pariet and Tazac today and if he could start taking them again as his reflux has been acting up… and he has not been able to take his reflux meds since he was first admitted three weeks ago… He had no treatment today.. just the antibiotic…. But we had to wait for hours to see the Dr their rounds took ages today!!! He didn’t end up seeing us till 3pm!!!
Ursula’s diary… Sunday 22nd Oct I was so tyred today as I woke up yesterday at 3am and did not go to bed till 10.30ish!! I slept a little beside Aaron while we waited for the Dr's to come and tell us what the go was with everything today… Aaron was a little upset today because he just wants to come home… He’s had enough of the hospital… His treatment is over so he wants to come home… but I am glad that he is not coming home yet as his platelets are below 10 and if he was to bump himself he definitely would bleed out!!! Or be in serious trouble!!!
Visitors…. Ursula,
Baby sitters…. Jackie and Mark
Sunday 23rd October
Today Aaron was in good spirits again… He was given a platelet transfusion last night.. 4 lots… in the hope that it would lift them a little. Apparently it only lifted them about 0.7.. Which was nothing … so this afternoon they gave him another platelet transfusion (a 4 Unit bag)… they gave him some drugs to sleep last night and he said he had the best nights sleep ever… so now he is going to ask for that every night… Aaron had some drugs for his throat today… it was a bit sore as a side affect for the Atgam and brushing your teeth when your nutrifills are low…
8pm he has cyclosporine… at 12 he has Timentin and then he has Tamazapan to sleep..
Visitors…. Ursula, Matthew and Sam , Barry and Craig, Corey and brief visit from Mark Armstrong, Hamish and Sam
Baby sitters…. Lisa (friend from church)
Monday 24th Oct
Today Aaron was a little bummed as I couldn’t come in to be with him because Izra is home on Mondays and I think he might still be germy… and Aaron said that no one else had been in to visit… he was feeling board, lonely, and frustrated because he just wanted to come home… All of his treatment has finished now… However they are keeping his fluids going as they may need to put things in…. be they drugs or blood or something else…. He’s still in good spirits… He perked up a little while I was there but it was only a short visit as I had to pick up Izra in 2 ½ hours... I called him later on and he seemed to be a little brighter… He apologised for being crabby…The boys chatted on the phone to him a little and were able to say good night to him…
Visitors…. Ursula,
Baby sitters…. Macaila
Tuesday 25th Oct
Aaron is okay today… nothing much has changed… Not much more information was given to us today about bloods etc… The will be getting him to do a treatment for Pneumonia this week sometime... Before he comes home...
Visitors…. Ursula, Luke and Jade, Matt and Allison, Anna (from Aaron’s work)
Wednesday 26th Oct
Today the Dr’s ordered his pic line to be locked off … apparently it can stay in his arm for up 6 months…and if he needs other drugs or blood transfusions in the mean time they can access the line… he has no fluid going through now… he gets around a whole lot better with out the pole!!! He was told that his ear ache may be because of a bit of sinus aggravation. Side affect form immune suppressant treatment… He is going tomorrow to the infectious diseases ward to have a nebulised drug that will give him a short protection against Pneumonia and the like…. The treatment takes about one hour and he has to be in a room by himself while he breaths in the stuff…he will have to do this treatment once a month (or rather 28 days)…. His blood count in White Cells went up about 2 points and his haemoglobin went up about 2 points... So that is good… no great but good…. The Dr’s also talked about him maybe going home for the weekend… which would be nice… When he does come home he will need to go to the hospital at least 3 times a week for blood counts (tests) and possible treatment or transfusions etc… they will be reviewing things each week but hope to see some kind of improvement in a month… We were then told that this may work but it may not work… He may have to repeat the treatment in a month or 3 or 6 or 9 months depending on how his blood counts reacts to treatment and how much they improve… He may very well be back at the beginning at the time that they decide that they need to do the Atgam treatment again… If all does not work after the 2nd lot of treatment they will look at finding a bone marrow transplant donor…
Visitors…. Ursula, Barry, Rachel, John and Shirley
Baby sitters….
Thursday 27th Oct
Today Aaron was supposed to be having the nebulised treatment for protection of viruses etc .... But there was a really big mix up… and he didn’t get it… I went out in the morning to do some shopping as he was supposed to be finished the pentemadine treatment about 10.30 am… but he was left in his room all day… As soon as I walked in Aaron said that the Dr's on that day had said that Aaron could go home today… Wow.. So wasn’t prepared for that… I came in at 12pm to take Aaron for lunch…. It took till 5.30pm to have everything organised for his leaving… They had to organise his appointments and treatments etc for next week and the Pharmacist had to get all his medications etc… The Dr's had to organise his FBC tests slips… and just as we thought we were right to go they had to give him a vit B12 injection…. He wasn’t too keen on that idea as they really hurt!!!
Jackie helped out and picked up the boys from Kindy and After school care.. And we just got to her house as she pulled up from picking them up….. So they got out of her car into ours… Then we got all of Aarons stuff out of the car into the house... I put on some ravioli and started to unpack his stuff... Then went through the house to finish off disinfecting as I had only done the kitchen... Kathy came over to help a little… that made it a bit faster... He was happy to be home… The children are sick!!! They have the croup!! Just have to keep them well away from their father and disinfect as much as I can… Glen 20 is my friend!!!
Today was okay… he was so much more chirpy and awake this morning… it’s amazing what at little bit of blood will do to someone… I had a much better day knowing that he was feeling better… The treatment went really well and he had the first 2Ltrs of Atgam running at 400… then the last 1/2ltr at 166 and then cranked up again…
Visitors….Ursula, Lisa and Anna,
Baby sitters…. Kids at kindy and after school care
Dad called last night from his holiday to ask how Aaron was
Ursula’s Diary…… I felt I needed to get dressed up today plus I had my new tops to wear.. so I straightened my hair (not that you could tell after 1 hour in the humidity of the day) and put on a little makeup.. I felt a whole lot better… I was gearing myself up for a good day… as yesterday had been so bad!!!
Saturday 22nd Oct
Platelets are really low and have been for the past few days… Dr’s concerned about it.. but not really willing to do much about it till Monday when the ‘team’ of haematologists are back… Aaron asked about his reflux drugs… Pariet and Tazac today and if he could start taking them again as his reflux has been acting up… and he has not been able to take his reflux meds since he was first admitted three weeks ago… He had no treatment today.. just the antibiotic…. But we had to wait for hours to see the Dr their rounds took ages today!!! He didn’t end up seeing us till 3pm!!!
Ursula’s diary… Sunday 22nd Oct I was so tyred today as I woke up yesterday at 3am and did not go to bed till 10.30ish!! I slept a little beside Aaron while we waited for the Dr's to come and tell us what the go was with everything today… Aaron was a little upset today because he just wants to come home… He’s had enough of the hospital… His treatment is over so he wants to come home… but I am glad that he is not coming home yet as his platelets are below 10 and if he was to bump himself he definitely would bleed out!!! Or be in serious trouble!!!
Visitors…. Ursula,
Baby sitters…. Jackie and Mark
Sunday 23rd October
Today Aaron was in good spirits again… He was given a platelet transfusion last night.. 4 lots… in the hope that it would lift them a little. Apparently it only lifted them about 0.7.. Which was nothing … so this afternoon they gave him another platelet transfusion (a 4 Unit bag)… they gave him some drugs to sleep last night and he said he had the best nights sleep ever… so now he is going to ask for that every night… Aaron had some drugs for his throat today… it was a bit sore as a side affect for the Atgam and brushing your teeth when your nutrifills are low…
8pm he has cyclosporine… at 12 he has Timentin and then he has Tamazapan to sleep..
Visitors…. Ursula, Matthew and Sam , Barry and Craig, Corey and brief visit from Mark Armstrong, Hamish and Sam
Baby sitters…. Lisa (friend from church)
Monday 24th Oct
Today Aaron was a little bummed as I couldn’t come in to be with him because Izra is home on Mondays and I think he might still be germy… and Aaron said that no one else had been in to visit… he was feeling board, lonely, and frustrated because he just wanted to come home… All of his treatment has finished now… However they are keeping his fluids going as they may need to put things in…. be they drugs or blood or something else…. He’s still in good spirits… He perked up a little while I was there but it was only a short visit as I had to pick up Izra in 2 ½ hours... I called him later on and he seemed to be a little brighter… He apologised for being crabby…The boys chatted on the phone to him a little and were able to say good night to him…
Visitors…. Ursula,
Baby sitters…. Macaila
Tuesday 25th Oct
Aaron is okay today… nothing much has changed… Not much more information was given to us today about bloods etc… The will be getting him to do a treatment for Pneumonia this week sometime... Before he comes home...
Visitors…. Ursula, Luke and Jade, Matt and Allison, Anna (from Aaron’s work)
Wednesday 26th Oct
Today the Dr’s ordered his pic line to be locked off … apparently it can stay in his arm for up 6 months…and if he needs other drugs or blood transfusions in the mean time they can access the line… he has no fluid going through now… he gets around a whole lot better with out the pole!!! He was told that his ear ache may be because of a bit of sinus aggravation. Side affect form immune suppressant treatment… He is going tomorrow to the infectious diseases ward to have a nebulised drug that will give him a short protection against Pneumonia and the like…. The treatment takes about one hour and he has to be in a room by himself while he breaths in the stuff…he will have to do this treatment once a month (or rather 28 days)…. His blood count in White Cells went up about 2 points and his haemoglobin went up about 2 points... So that is good… no great but good…. The Dr’s also talked about him maybe going home for the weekend… which would be nice… When he does come home he will need to go to the hospital at least 3 times a week for blood counts (tests) and possible treatment or transfusions etc… they will be reviewing things each week but hope to see some kind of improvement in a month… We were then told that this may work but it may not work… He may have to repeat the treatment in a month or 3 or 6 or 9 months depending on how his blood counts reacts to treatment and how much they improve… He may very well be back at the beginning at the time that they decide that they need to do the Atgam treatment again… If all does not work after the 2nd lot of treatment they will look at finding a bone marrow transplant donor…
Visitors…. Ursula, Barry, Rachel, John and Shirley
Baby sitters….
Thursday 27th Oct
Today Aaron was supposed to be having the nebulised treatment for protection of viruses etc .... But there was a really big mix up… and he didn’t get it… I went out in the morning to do some shopping as he was supposed to be finished the pentemadine treatment about 10.30 am… but he was left in his room all day… As soon as I walked in Aaron said that the Dr's on that day had said that Aaron could go home today… Wow.. So wasn’t prepared for that… I came in at 12pm to take Aaron for lunch…. It took till 5.30pm to have everything organised for his leaving… They had to organise his appointments and treatments etc for next week and the Pharmacist had to get all his medications etc… The Dr's had to organise his FBC tests slips… and just as we thought we were right to go they had to give him a vit B12 injection…. He wasn’t too keen on that idea as they really hurt!!!
Jackie helped out and picked up the boys from Kindy and After school care.. And we just got to her house as she pulled up from picking them up….. So they got out of her car into ours… Then we got all of Aarons stuff out of the car into the house... I put on some ravioli and started to unpack his stuff... Then went through the house to finish off disinfecting as I had only done the kitchen... Kathy came over to help a little… that made it a bit faster... He was happy to be home… The children are sick!!! They have the croup!! Just have to keep them well away from their father and disinfect as much as I can… Glen 20 is my friend!!!
Tuesday, May 02, 2006
First week in hospital 13th-20th October 2005
Thursday 13 Oct 2005
We went to the Hospital Dr as an out patience today and Aarons blood count was down again… We found out that his brother is not a tissue match (bone Marrow transplant)… So they will not be doing a Bone Marrow Transplant at this time… The Dr booked him in for tomorrow (Friday 14th Oct) to start immune suppressant treatment… Because we told him we were frustrated in just sitting around doing nothing... We were told that Aaron will be in hospital for a week or so... Then they will monitor him for 4 months to see if it works… If it doesn’t then they will look at getting another bone marrow match but they will lean towards doing the immune suppressant therapy again and just change the concoction a little… As it is less risky than transplanting from someone who is not related… Also they really want to see if his immune system will stop attacking his blood and if his blood counts will come back on their own...Then they will monitor him each week by taking a full blood count test to see if the treatment has worked… He feels happier that something will finally be happening... He is also looking forward to the fact that he will be getting all the attention from the nurses again!!! (boys and girls)(*wink wink)
Friday 14th October 2005
Aaron is in hospital today and he had a platelet transfusion as his Platelet level was 11 and they wanted it to be higher so they could then insert a Pick line which is a small tube that is surgically inserted into his arm … it goes right down into his chest along the vein to administer the treatment to a main artery… He had a reaction a few hours later where he was shaking severely… It is called a rigor… everyone was worried... Corey and Dad were there when it happened, I wasn’t… I was picking the children up from school… Apparently the rigor was so violent that his 64kg body with the convulsions moved the hospital bed so much that it was knocking against the wall... The Dr’s seem to think it may have happened because his body is trying to fight a germ that he may have in his system at the moment… Or it could have been a reaction to the test dose of the horse ATGAM that they have to give him before they give him the full course… They gave him 2 bags of antibiotics to fight the infection just in case… and have postponed treatment until they are sure that that was why the rigor happened…
Visitors…. Myself, His brother, Dad, and our border..
Baby sitters…. friends that lives close to hospital
Sat 15th October
Aarons treatment (horse steroid Atgam and Cyclosporine…Immune suppressant) is now postponed till Monday as there are not enough staff to give him the attention if something was to happen again… They are quite sure that he did have the rigor because of a germ in his body... His temp has been slightly high with one or 2 peeks… Platelet level was 34 today...
Visitors…. Myself and Dad
Baby sitters…. am-one of my girlfriends and pm-Aarons school friend and partner…
Sunday 16th Oct
Aaron was looking pale again today... His lips were not the normal blending in white, they actually looked blue.... They will be giving him some blood today sometime… Nothing much else to report… He is finding it much harder this time in hospital as he really does feel sick... Last time I think it was just a change of atmosphere and a bit of a break... I think the longevity of this disease is sinking in…
Visitors…. myself, a friend from TAFE and girlfriend, Aarons Tennis buddy, Dad, friend from High school and her partner…
Baby sitters…. A church friend’s son...
Mon 17th Oct
Today we found out that Aaron has 10% PNH cells... Apparently someone who has full blown PNH has 50%... So this has to be monitored over the next little while... We were told also that it could go full blown at any time... They are definitely treating him solely for SAA at the moment... The treatment for PNH is the same anyway...
They gave him 2 units of blood yesterday because his blood was so low... (HGB 66)
They didn't administer the Atgam today... He has 4 days of that at 2.50 litres per day.. For the first 3 days he has to have constant monitoring as the stuff can cause some really serious things to go wrong... Like his neck to swell and he can't breath... or the heart to stop... or thrombosis... Arh just a walk in the park really.... Some of the nurses have not dealt with this stuff and are a little wary of it... So it will keep them on their toes tomorrow!!! And me biting my nails... He will be administered it for 6 to 8 hours and he will have hourly observations taken... He is a little nervous about it.. I’m glad they did not do it today because I was not able to get up there to see him till tonight for a few hours... Tomorrow Izra will be at kindy and Ethan at school... So I will go up there first thing...
Visitors…. My self, Aarons Dad and a friend
Baby sitters….pm-Friends from church who live close to the hospital...
Tuesday 18th October
At 9.20am today Aaron started his first day of Atgam treatment…. In preparation for the Atgam they had to give him some paracetamol and some Phenergan and some adrenaline… The Phenergan made him instantly drowsy and he fell asleep… and hour later (10.20am) they administered the Atgam and they had to have 3 people watching over him... The Head RN a cardiologist and another nurse… they had to take obbs every 15 mins for the first hour…
At about 2.30pm he had a rigor… He started to shiver… They put on the space blanket (silver heat blanket) and then gave him some Panadol… He had just gotten warm and he needed to go to the loo so he had to get out of the nice warm bed and pee… He got the shakes almost instantly… The head RN called and got some Pethidine okayed by the DR’s… One injection of that settled him right down…
One of the Dr’s reacted a little funny today to a comment Aaron said. It was.. ‘they still didn’t know what is wrong with me”... She said, 'yes we do'… In a bit of a defensive but not rude way… Andrew our Dr friend was there he had on his Dr identity tag for the hospital he is working in at the moment…. I think she may have felt that she had to prove herself or something…
Visitors…. Myself, Dad, Andrew, Marey.
Baby sitters….church friend
Wednesday 19th Oct
Elisabeth (the nurse looking after Aaron in the morning) got it all running a little earlier today because of the rigor yesterday they decided if they did it all together things would go much better as the pre meds would last longer and that would probably help him not have another rigor… So they did the Phenergan and the steroid then straight on with the Atgam.. It ran all day at 400 with no problems…
Aaron was upgraded today to a private room as he was suffering from neutropenia… (Nut's @ 0.70 and falling) Which means he is highly susceptible to germs and infections… So to control who comes to see him and the Dr’s and nurses treating him he is in a room by himself and everyone that comes in to see him has to wash their hands etc… He likes the room by himself as he can sleep much better and he can leave all his bathroom products in the room… If it is noisy he can just close the door…
A new nurse came on this afternoon and she had very poor people skills… She changed his bag of Atgam to the last 500mls and she put the time right down to 166… which means the bag would go over the 8 hour time limit that he needed to have it in… When I asked her about it she said really defensively that she was the Rn on duty and that was the way she wanted to do it… that she is not prepared to risk the patient… I thought about it and I discussed with Aaron and Dad and they were telling me that I shouldn’t worry about it because Aaron would be the one that would have to put up with her treatment tonight and she might get nasty… but it was just not sitting right with me… I felt sick to the stomach like I do when I feel the boys need protection…. So I went out to talk with her again… I said ‘I’m not trying to tell you how to do your job… I’m just trying to understand because what is happening now is contrary to what has happened b4 and he only has 2 hours left in the 8 hours not three… at 166 the bag would take 3 hours…’ she said that she was wanting ‘to slow it down because of his reaction last night and watch if for an hour… If all was okay then I will turn it back up.’… But she was so defensive about it…
Visitors…. Ursula, Dad, Warrick
Baby sitters…. Kids at kindy and after school care
Thursday 20th Oct
Bad day today Aaron had no energy he was falling asleep while I was doing a 10min hair tidy up job and trimming his 5 day growth on his beard... He is not able to use a razor anymore because his blood levels could drastically change if he was to nick himself just a little bit!! His head was really hurting and his jaw and tongue were swollen… (no one told him that while he was on Atgam he shouldn’t brush his teeth)… Apparently if you brush your teeth when you are on the stuff and your blood counts (mostly white blood cells... Neutrophils) are down you are more likely to break your gums and get a germ in them which cause swelling of your tongue and neck... The sole of his feet were really sore as if he had been standing on them for hours… Only he had been lying down for the past 4 or so days…. Because he was having a bad day I was having a bad day and was worrying about him… It is so sad and frightening to see him so weak!!! He had 1 pint of blood tonight…
Visitors…. Ursula, Dad,
Baby sitters…. Kids at kindy and after school care
Saturday, April 29, 2006
Slowly getting it!
Friday 7th Oct 2005
We went to the Dr's at the Hospital yesterday and he said it could be from 6 to 12 months b 4 things come good... a bit of a bummer... if we can't go to church for that long... well I think it will take a tole on me as that is my social outlet... I’m a bit scared really... Especially if we can't go out anywhere because he ‘might come into contact with germs’ etc...The Dr's said he’s still got the Anaemia that’s a definite... Also the vit b12 deficiency is evident… Even though the Dr’s gave him one injection each day while he was in hospital last week… apparently enough for at least 5 years… But Aaron’s body did not use any of it… It has all gone somewhere but no one knows where… Magically it has disappeared… It took them 4 days to find out what injection he was given on the second day because he was given a red injection… Where as the day before the vit B12 injection was yellow… The Dr’ were baffled… I’m sure they thought we were fibbing or something… Perhaps too many drugs. :p Eventually when they found out we were told that it was a vit K injection… Thank goodness he did not have thick blood as this could have caused blood clots… I think the nurse had a hard night that night and was picking injections with his eyes closed… The Dr’s are still waiting on the other results of the other blood disease they think he has got......If his brother is a match for donating bone marrow they might just give him immune suppressant drug and see what his body does by itself at first....cause a transplant is really serious... The way they were talking last week it sounded like things wouldn't take that long but if he has the transplant he will be at least 6 to 12 months recovering from that and may not even be able to go to work... So basically it sounds like they will try the immune suppressant drugs first so his immune system stop attacking his blood cells… Then they will do the transplant if there is not enough change in that ... but it could take 6 months b4 they decide that the immune suppressant is not working... They have to take bloods at the hospital every week(at least 2 times) to monitor him and the progress if any of his blood...
I think I just have to be really organised and make plans to visit (healthy) people for a few hours every other day or something so I can get my social fix.... He is okay to be left alone for a few hours or so at the moment... He really wants to go back to work... But I think he would only be able to do a few hours at a time... If any at all, and I would have to drive him because he would be stuffed if he walked from the train station… Catching the train is not a good idea because it is a great place to catch germs too…He can not go to the movies or shopping centres, and buffet meal places are definitely out of the question… As these places are all really good for catching germs… So is going to the hospital but most of the people in the hospital where we go have low immune systems too… So we just have to keep our fingers crossed… It’s frustrating for us all… I want to help him but we are all so helpless!! The Dr’s are having trouble deciding what to do with him… What hope do we have?
Aaron just wants to not be scared about the kids jumping on him… that he will not bleed internally... Also that germs will come into our house... As his immune system will be very low... And kids are so germy… We have had to modify our family interactions so much… Aaron and I do not kiss on the lips anymore… The boys are not allowed to hug him with their faces near his… Glen 20 is our new best friend!!
We are in for a possible 1 to 2 years of this treatment... Till he feels semi normal or at a level where he can function better.... No one knows much about the disease and no one can give us conclusive answers… It all depends on his reaction to drugs and his body’s ability to regenerate it's self etc.
I don't know how he will be when he undergoes the treatment in the hospital… The doctors are not really giving us much information either… We just know that they do not do this treatment much as it is really specific to Aplastic Anemia… And because not many people have this disease … (I think they have seen one or 2 cases in the hospitals history) well basically it is all a bit of an unknown… not particularly reassuring really…
We went to the Dr's at the Hospital yesterday and he said it could be from 6 to 12 months b 4 things come good... a bit of a bummer... if we can't go to church for that long... well I think it will take a tole on me as that is my social outlet... I’m a bit scared really... Especially if we can't go out anywhere because he ‘might come into contact with germs’ etc...The Dr's said he’s still got the Anaemia that’s a definite... Also the vit b12 deficiency is evident… Even though the Dr’s gave him one injection each day while he was in hospital last week… apparently enough for at least 5 years… But Aaron’s body did not use any of it… It has all gone somewhere but no one knows where… Magically it has disappeared… It took them 4 days to find out what injection he was given on the second day because he was given a red injection… Where as the day before the vit B12 injection was yellow… The Dr’ were baffled… I’m sure they thought we were fibbing or something… Perhaps too many drugs. :p Eventually when they found out we were told that it was a vit K injection… Thank goodness he did not have thick blood as this could have caused blood clots… I think the nurse had a hard night that night and was picking injections with his eyes closed… The Dr’s are still waiting on the other results of the other blood disease they think he has got......If his brother is a match for donating bone marrow they might just give him immune suppressant drug and see what his body does by itself at first....cause a transplant is really serious... The way they were talking last week it sounded like things wouldn't take that long but if he has the transplant he will be at least 6 to 12 months recovering from that and may not even be able to go to work... So basically it sounds like they will try the immune suppressant drugs first so his immune system stop attacking his blood cells… Then they will do the transplant if there is not enough change in that ... but it could take 6 months b4 they decide that the immune suppressant is not working... They have to take bloods at the hospital every week(at least 2 times) to monitor him and the progress if any of his blood...
I think I just have to be really organised and make plans to visit (healthy) people for a few hours every other day or something so I can get my social fix.... He is okay to be left alone for a few hours or so at the moment... He really wants to go back to work... But I think he would only be able to do a few hours at a time... If any at all, and I would have to drive him because he would be stuffed if he walked from the train station… Catching the train is not a good idea because it is a great place to catch germs too…He can not go to the movies or shopping centres, and buffet meal places are definitely out of the question… As these places are all really good for catching germs… So is going to the hospital but most of the people in the hospital where we go have low immune systems too… So we just have to keep our fingers crossed… It’s frustrating for us all… I want to help him but we are all so helpless!! The Dr’s are having trouble deciding what to do with him… What hope do we have?
Aaron just wants to not be scared about the kids jumping on him… that he will not bleed internally... Also that germs will come into our house... As his immune system will be very low... And kids are so germy… We have had to modify our family interactions so much… Aaron and I do not kiss on the lips anymore… The boys are not allowed to hug him with their faces near his… Glen 20 is our new best friend!!
We are in for a possible 1 to 2 years of this treatment... Till he feels semi normal or at a level where he can function better.... No one knows much about the disease and no one can give us conclusive answers… It all depends on his reaction to drugs and his body’s ability to regenerate it's self etc.
I don't know how he will be when he undergoes the treatment in the hospital… The doctors are not really giving us much information either… We just know that they do not do this treatment much as it is really specific to Aplastic Anemia… And because not many people have this disease … (I think they have seen one or 2 cases in the hospitals history) well basically it is all a bit of an unknown… not particularly reassuring really…
We were but infants
Monday 3 Oct 2005
He came home on Monday at 2.30pm because apparently there are less germs to be caught at home than in hospital.... he has to go back on Thursday for blood tests.. We were told that in 10 days they would know if Corey is compatible to be a marrow donor…
One of the Dr’s said at this time that he could not go to work for at least a month or so... he will probably have to have a bone marrow transplant... We felt it was so all is up in the air... We were waiting on the results of the tests so they could decide how much and what type of chemo to give him, or if they need to give him any at all... and if his bother was a tissue match then it might have been only be 3 or 4 weeks till the transplant... or they would have to see if there is another donor with his tissue type... he may need to go on an immune suppressant until the time of the opp or if there is no match the immune suppressant is the treatment…maybe... If he has the transplant it could be 6 to 8 weeks after that b4 he can go back to work.. so with that amount of possible time off of work who knows what will happen?... The transplant will be happening at the Royal Brisbane as they are the specialists there.. the Dr's can give no definite answers yet as the test results are not conclusive... Life hangs in the balance so to speak...
At the moment we are just trying to get him to have enough energy to go for a walk around our house... then maybe we can look at other things..
ah we were so infantile in the disease... we really were going to learn much more
He came home on Monday at 2.30pm because apparently there are less germs to be caught at home than in hospital.... he has to go back on Thursday for blood tests.. We were told that in 10 days they would know if Corey is compatible to be a marrow donor…
One of the Dr’s said at this time that he could not go to work for at least a month or so... he will probably have to have a bone marrow transplant... We felt it was so all is up in the air... We were waiting on the results of the tests so they could decide how much and what type of chemo to give him, or if they need to give him any at all... and if his bother was a tissue match then it might have been only be 3 or 4 weeks till the transplant... or they would have to see if there is another donor with his tissue type... he may need to go on an immune suppressant until the time of the opp or if there is no match the immune suppressant is the treatment…maybe... If he has the transplant it could be 6 to 8 weeks after that b4 he can go back to work.. so with that amount of possible time off of work who knows what will happen?... The transplant will be happening at the Royal Brisbane as they are the specialists there.. the Dr's can give no definite answers yet as the test results are not conclusive... Life hangs in the balance so to speak...
At the moment we are just trying to get him to have enough energy to go for a walk around our house... then maybe we can look at other things..
ah we were so infantile in the disease... we really were going to learn much more
Thursday, April 27, 2006
Bottoms Up
Sunday, 2nd October 2005
Marey and I went to the hospital today while the boys went to church with someone else and we got a whole heap of balloons and streamers to decorate Aaron's room... After all it was his 30th and who doesn’t want a fuss to be made over them on their 30th?... He was moved into his own room on Thursday as he was neutropenic... Which means he had a very low immunity and being in a room with 3 other people and their guests could pose a potential threat to Aaron... Marey and I made Aaron a cake for his birthday... We had such a blast last night making the cake… I wanted to make a bottom cake… Because it was a "real bummer" that he was in hospital... Because it was the "raw end" of the deal... We laughed so hard!... because of all the sad little jokes and puns we were coming up with... It's amazing how much fun you can have from one simple little thought about a "BUM" cake.. It was great medicine for me... I couldn’t think how to make it look like a bottom... Marey told me to go look in the mirror... At first I refused, but then I gave in because it was just not coming to me... It did not help one bit!... Marey said that Aaron would appreciate that I modeled for the cake... How embarrassment!.. We took his guitar and some music in so we could have a bit of a party... I got the nurses to give us a big syringe so I could stick it into the cake… I thought it might look better than a candle... It did look funny though... Laura came to visit... So did JB and Sabrina... So it was a nice little birthday party... Aaron was having some fun... He played the guitar and we sang... He stopped for a while and I wanted to play another song but I made a meal of it so Aaron got the guitar and played one more... Then he said that he had had enough and I could tell by the tone in his voice and the look in his eye that he really meant it...
What is PNH?
Friday 30th September 2005
The Dr’s came in Thursday and they were saying that they were leaning towards this rare blood disease (PNH)… I went home that night and did some research on the internet to see if I could get some information on this disease… I found a couple of sites that helped a little but it all seemed so scary… One sight said the life expectancy was 10 to 16 years… This was really scary stuff for me… I wept while reading this... Aaron was a few days off of turning 30 and we were supposed to be headed for the next ‘faze’ of life where things looked up… Where we could sit back and enjoy some of the hard work over the past 8 and ½ years… The scrimping and saving for a house in the first 2 years of marriage… The next 'faze' was when having our beautiful children join family and bless our lives... During this time we were renovating the house that we bought as a “Renovators Delight”… Of the 2 and ½ years of scrounging to find a dollar while Aaron completed his Mechanical Engineering degree...But it was not to be so…
So I went searching for a little more and I found a PNH support web site (http://www.pnhdisease.org/)... I signed up the forum and posted a note to ask some real people that had been through some of this and hoped they had some good news for me... Also I wanted to learn from them if there was anything that I could learn….
I asked friends and family if they wanted to visit Aaron could they talk about normal everyday things… The seriousness of the disease was starting to hit Aaron now and he was only beginning to understand how bad it was… He was scared as one should be when they are suffering something that is beyond their control...… Aaron was board out of his mind… He couldn’t do anything and he was no longer attached to a pole…. He was suffering lethargy but lying in bed all day just seemed to accentuate the fact that he was limited in what he could do and would be for quite a long while... Also it was getting progressively worse as the days went on... His blood counts were dropping along with his energy…. He looked really sick now… He was looking pasty before his hospital admission but now he was camouflaged by the bed sheets… It was wearing him out to eat a piece of toast in the morning for breakfast... After eating that one piece of toast he was tyred and he needed to sleep for at least 2 hours... The simple act of chewing zapped so much of his energy... He was dropping and dropping fast… I was wondering what the Dr’s were going to do for him… Give him something… PLEASE!...
The information that the Dr’s were giving us was….It looked as though he would be in the hospital till Monday or Tuesday at which time we would be “looking” at his blood count and if it was dropping any lower than it already was they would be “looking” at giving him a blood transfusion to give him a little more strength etc and then they would be “looking” at sending him home… Until the other test results were conclusive… It really felt like no one knew anything... Like they were all grasping at straws... If this had the Dr's stumped what hope did we have of dealing with it and learning about it?
Originally we were told that when he went home he would have to have a vitamin B12 injection every day for 2 weeks and then he will have to have one every 3 months for the rest of his life… We would have to watch that he has no bad falls or bumps to avoid bleeding internally… We would also have to take constant temperatures and as soon as his temp becomes 37.5°c he would have to rush him to hospital to have antibiotics intravenously as his system would not handle an infection of any kind… Like a common cold could kill him if it was not caught and treated in time…
It was starting to catch up with both of us as we realise the extent of it all… Apparently the Dr’s still hadn’t ruled out leukaemia… It was a waiting game at that point… The Dr’s had asked his brother Corey if he would be tissue typed on Monday… It's a 'simple' blood test (only more than one vile) that determines if he would be a mach for Bone Marrow Donation… The Dr's said that it was better to have the tests done right away as Aaron may need a Bone Marrow Transplant (BMT)… We asked about other family members and the best chance of a match is with siblings... There is a 1 in 4 chance for a match with siblings... With our children it was like 1% chance that they could be a match and they would have to be 50kg's... which neither of our children were even half way there... We would really have to feed them up if that was an avenue we had to go down… One that would only be done with much deliberation...We also asked about other family members… They were not really a viable option either…
Paroxysmal Nocturnal Hemoglobinuria (PNH) is a rare but potentially serious blood disease that can affect people of any age. Individuals with PNH acquire a defect in the most immature bone marrow cells, the stem cells, that leads to increased hemolysis, or destruction, of red cells in the blood stream, causing the urine to turn red or dark and causing anemia. There is also a tendency for increased thrombosis of veins in the abdomen leading to potentially fatal liver failure. The PNH defect can also occur without significant hemolysis or clotting. PNH may occur as an isolated disorder or PNH may occur in association with Aplastic Anemia and MDS
The Dr’s came in Thursday and they were saying that they were leaning towards this rare blood disease (PNH)… I went home that night and did some research on the internet to see if I could get some information on this disease… I found a couple of sites that helped a little but it all seemed so scary… One sight said the life expectancy was 10 to 16 years… This was really scary stuff for me… I wept while reading this... Aaron was a few days off of turning 30 and we were supposed to be headed for the next ‘faze’ of life where things looked up… Where we could sit back and enjoy some of the hard work over the past 8 and ½ years… The scrimping and saving for a house in the first 2 years of marriage… The next 'faze' was when having our beautiful children join family and bless our lives... During this time we were renovating the house that we bought as a “Renovators Delight”… Of the 2 and ½ years of scrounging to find a dollar while Aaron completed his Mechanical Engineering degree...But it was not to be so…
So I went searching for a little more and I found a PNH support web site (http://www.pnhdisease.org/)... I signed up the forum and posted a note to ask some real people that had been through some of this and hoped they had some good news for me... Also I wanted to learn from them if there was anything that I could learn….
I asked friends and family if they wanted to visit Aaron could they talk about normal everyday things… The seriousness of the disease was starting to hit Aaron now and he was only beginning to understand how bad it was… He was scared as one should be when they are suffering something that is beyond their control...… Aaron was board out of his mind… He couldn’t do anything and he was no longer attached to a pole…. He was suffering lethargy but lying in bed all day just seemed to accentuate the fact that he was limited in what he could do and would be for quite a long while... Also it was getting progressively worse as the days went on... His blood counts were dropping along with his energy…. He looked really sick now… He was looking pasty before his hospital admission but now he was camouflaged by the bed sheets… It was wearing him out to eat a piece of toast in the morning for breakfast... After eating that one piece of toast he was tyred and he needed to sleep for at least 2 hours... The simple act of chewing zapped so much of his energy... He was dropping and dropping fast… I was wondering what the Dr’s were going to do for him… Give him something… PLEASE!...
The information that the Dr’s were giving us was….It looked as though he would be in the hospital till Monday or Tuesday at which time we would be “looking” at his blood count and if it was dropping any lower than it already was they would be “looking” at giving him a blood transfusion to give him a little more strength etc and then they would be “looking” at sending him home… Until the other test results were conclusive… It really felt like no one knew anything... Like they were all grasping at straws... If this had the Dr's stumped what hope did we have of dealing with it and learning about it?
Originally we were told that when he went home he would have to have a vitamin B12 injection every day for 2 weeks and then he will have to have one every 3 months for the rest of his life… We would have to watch that he has no bad falls or bumps to avoid bleeding internally… We would also have to take constant temperatures and as soon as his temp becomes 37.5°c he would have to rush him to hospital to have antibiotics intravenously as his system would not handle an infection of any kind… Like a common cold could kill him if it was not caught and treated in time…
It was starting to catch up with both of us as we realise the extent of it all… Apparently the Dr’s still hadn’t ruled out leukaemia… It was a waiting game at that point… The Dr’s had asked his brother Corey if he would be tissue typed on Monday… It's a 'simple' blood test (only more than one vile) that determines if he would be a mach for Bone Marrow Donation… The Dr's said that it was better to have the tests done right away as Aaron may need a Bone Marrow Transplant (BMT)… We asked about other family members and the best chance of a match is with siblings... There is a 1 in 4 chance for a match with siblings... With our children it was like 1% chance that they could be a match and they would have to be 50kg's... which neither of our children were even half way there... We would really have to feed them up if that was an avenue we had to go down… One that would only be done with much deliberation...We also asked about other family members… They were not really a viable option either…
Paroxysmal Nocturnal Hemoglobinuria (PNH) is a rare but potentially serious blood disease that can affect people of any age. Individuals with PNH acquire a defect in the most immature bone marrow cells, the stem cells, that leads to increased hemolysis, or destruction, of red cells in the blood stream, causing the urine to turn red or dark and causing anemia. There is also a tendency for increased thrombosis of veins in the abdomen leading to potentially fatal liver failure. The PNH defect can also occur without significant hemolysis or clotting. PNH may occur as an isolated disorder or PNH may occur in association with Aplastic Anemia and MDS
Hospital Sleep Over
Thursday 29/9/05
I ended up sleeping over at the hospital on the Tuesday night....Thankfully we had a friend (Marey) boarding with us and she offered to look after the boys so I could stay... I left early on the Wednesday morning to go home and get the boys ready for school... Then After dropping them off at school and Kindy I went straight to the hospital to sit with Aaron all day and talk to the Dr's when they came around. Hoping that they may know more than they did on the Tuesday....
We didn't know much more by Thursday as they were still conducting a whole lot of tests... The DR's had said on the positive side that it looked like it might not be leukaemia... But it could still be viral and he may need a bone marrow transplant at some time... They tested Aaron’s blood for a large range of diseases like chronic fatigue... Hepatitis B and C, Aids etc and all of those have come back clear.. We were told that some of the tests results could take up to 7 weeks.... so at that stage he was in hospital till the following Monday at least.... Their reasoning was... because his blood count was so low it would be dangerous for him to be at home. The risk we would take with having him home was if he was to bang himself hard enough he would bleed out in like 3 mins.. Plus he really had no energy. I was much happier with Aaron being in Hospital where they could give him the care he may have needed immediately..... His white blood count was 2.4 on Wednesday and 1.9 on Thursday they should be round 4.0-11.0... His red blood (haemoglobin) was 68 and it should be around 135-180.... His platelets were 16 which was really low and should be round 150-450. Platelets are responsible for the clotting factor in your blood… The Dr’s were concerned with all the low counts but this was the one that they were really concerned with because of the bleeding risk…. He was also given a vitamin B12 injection (because that was low too) on the Thursday morning to see if that helped any.... The Doctors had him on some hydration (saline) since the day he was admitted to hospital in the hope that it would help his blood counts... It didn’t... So they took him off the drip by Thursday afternoon at 2.30pm...
I ended up sleeping over at the hospital on the Tuesday night....Thankfully we had a friend (Marey) boarding with us and she offered to look after the boys so I could stay... I left early on the Wednesday morning to go home and get the boys ready for school... Then After dropping them off at school and Kindy I went straight to the hospital to sit with Aaron all day and talk to the Dr's when they came around. Hoping that they may know more than they did on the Tuesday....
We didn't know much more by Thursday as they were still conducting a whole lot of tests... The DR's had said on the positive side that it looked like it might not be leukaemia... But it could still be viral and he may need a bone marrow transplant at some time... They tested Aaron’s blood for a large range of diseases like chronic fatigue... Hepatitis B and C, Aids etc and all of those have come back clear.. We were told that some of the tests results could take up to 7 weeks.... so at that stage he was in hospital till the following Monday at least.... Their reasoning was... because his blood count was so low it would be dangerous for him to be at home. The risk we would take with having him home was if he was to bang himself hard enough he would bleed out in like 3 mins.. Plus he really had no energy. I was much happier with Aaron being in Hospital where they could give him the care he may have needed immediately..... His white blood count was 2.4 on Wednesday and 1.9 on Thursday they should be round 4.0-11.0... His red blood (haemoglobin) was 68 and it should be around 135-180.... His platelets were 16 which was really low and should be round 150-450. Platelets are responsible for the clotting factor in your blood… The Dr’s were concerned with all the low counts but this was the one that they were really concerned with because of the bleeding risk…. He was also given a vitamin B12 injection (because that was low too) on the Thursday morning to see if that helped any.... The Doctors had him on some hydration (saline) since the day he was admitted to hospital in the hope that it would help his blood counts... It didn’t... So they took him off the drip by Thursday afternoon at 2.30pm...
I took the boys back to visit their Dad at the hospital that night but boys being boys.... they really have trouble sitting still and being quiet... I do expect a lot from our 6 & ½ year old and 3 & ¼ year old...
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