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 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

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

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 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...

First Blessing

Wed 28th Sept 2005
I drove straight to one of our minister friends place to see if he could come to the hospital to give Aaron and administration. He lives about 5 mins away from the hospital and I really felt like I needed someone else there with me to help me. Ray has been like a father to us and has helped us out quite a few times when we have needed fatherly advice or support, especially in matters of a spiritual nature. He was very obliging and came right away with me. Some of the things that I remember from the blessing were that the Dr's would be blessed with the knowledge to discover and diagnose what it was that was wrong with Aaron. And to know that Heavenly Father loves him and that his family love him and will stand by him through all this. ... It was comforting to have someone support us in the very beginning of what would be a long and unknown journey. Also I felt that the Lord really was looking out for us and he would be helping us by strengthening and guiding us all through this. Sometimes simply to have the already learned knowledge reaffirmed can be a great comfort.

It all began

First signs Tuesday 27th September...

Over the past few months we had asked Andrew (a Friend and a Surgeon) a lot of questions regarding Aarons health in the last year... as he seemed to be getting more and more strange sicknesses... Like one time he had this sinus infection but it was giving him the shivers he convulsed a bit and was getting weird chills... And another time he stood up and passed out for no real reason. He had been to the Dr's to get X-Rays to see if there really was a brain.. There was so that was not the problem... There were so many mysteries.. One thing we knew for sure was he was definitely more and more susceptible to little germs that the kids brought home from Kindy and School.. But we thought that was just "normal"... as it was the first year that the kids were both in Kindy and school... He caught a cold from the kids around the end of August and had to have 9 days off of work as it really knocked him out... He had no energy and was really feeling lowly.. We were worried about his job as he had only been there for 6 months.. They were really understanding... and he did a whole heap of overtime every day and they took off the overtime in-Lue of his sick days,as he did not have enough accumulated sick days to cover his time away.

Aaron had been feeling funny for a few weeks and I had been saying that he looked pale for months... We just thought that he was still a little sick from the virus he had a few weeks ago... perhaps he was coming down with something else again? He had also noticed a bruise that had hung around for 5 weeks or so and it was really dark in colour only he did not remember ever hitting himself hard enough to warrant a bruise that colour and depth ... I said that maybe he had stoped too abruptly on his brothers bike (he borrowed it to ride to work on) and he may not remember bumping himself.... He kept asking me if he should go to the Dr's and get it looked at... because it was on the inside of his groin we were both hesitant. After all it's "just" a bruise. I didn't think a bruise taking that long to heal was too abnormal.

On Thursday (22nd Sep) I wanted to go out on our weekly date night... I was frustrated that he seemed reluctant to go out.. After asking several times and getting an unenthusiastic "I'm not sure" or "I'm really tyred".... my exact words were.... "Well do you want to go out or not? It seems that you are not interested in spending time with me." I need to say here that his decreased energy was leading me to think that he was loosing zest for life... I thought he was becoming depressed or something. Also in my defence I do not normally go off the handle like that it's just we had been planning this date for a couple of weeks and it has always been difficult to get baby sitters. I was really disappointed and hurt. How was I to know that he had a rare blood disease and was suffering lethargy from the disease?

We pulled down our small 3x3 garden Shed on Saturday (24th Sep 05)…he was getting very breathless and dizzy. I was telling him to breathe deeper... It seemed to me he was suffering from anxiety and not breathing properly.... Andrew (our Surgeon friend) helped us put the shed back up When Aaron described what it was that he was feeling Andrew said "I don't know what you have got, you need someone like House,(fantastic Dr on a new TV series that diagnoses and cures rare diseases) to find out what the weird thing is that you have." After putting up the shed Aaron Drove me to an appointment that I had in the city. Then when he came home he went to bed to have a bit of a rest to get energy to continue on with the rest of the job... He moved all the little bits and pieces by himself(andwith the help of our 6 year old) as I was not going to be finished my appointment in the city until 5.30ish..
After moving all the stuff in the shed Aaron drove to pick me up in the city.

Sunday he was still feeling sickly.... We thought that he may be coming down with something else... So he stayed home from church while the children and I went...

Monday I took him to the train station so he could go to work... The walk from the train station to his work is at least a 15 to 20 mins... he called me a little while after he had been at work and asked if I could book him in to see our GP... as he was feeling more sick. He said that he was totally stuffed and his heart was pounding in his chest after walking to work. He was really worried about the breathlessness and lack of energy... I booked him in for the next day. He wanted to go in his lunch hour so he would not have to take more time off work...

I drove him to work on Tuesday morning and came back at lunch time to take him to the Dr's. As soon as we walked in and told her of the symptoms that he had been having she said that he needed to get an X- Ray of his chest to check his heart and lungs to see if they were alright and he also needed to get a blood test... She was clear in telling us that if he did not have enough time to get the X-Ray that day that she wanted to have the blood test done right away... We thought nothing of it at the time.. (Hindsight is such a wonderful thing). I picked him up from work that afternoon.

He drove to work on Wednesday morning as I didn't really need to go anywhere for the day and I could see how tyred he was... he dropped the kids off at Kindy and School and then went on to work.. I received a call from the GP's Receptionist at 8am.. I was worried and a little anxious... that they had found something.. This was obvious as they had not called us before when something little was wrong and they had never had the results first thing the next day... Donna repeated that "Dr needs to see Aaron right away".. I gave her his work phone number... then I hung up the phone and panic set in.. I waited for at least an hour, although it felt like several... every time I looked in the mirror as I wondered past the bathroom not really knowing what I was doing (I was cleaning or something) all I could think was, "It can't be something too bad, who else will love me like he loves me?" Aaron called me about one and a half hours later to tell me that our Dr said worst case scenario was it may be Leukaemia or it could be a reaction to his reflux drugs or something else that (I couldn't remember) may be the cause of his very low blood count.. Then Aaron went on the say that he would come home and pick me up... to which both Donna and our Dr said, "No!" He started to tell me that he couldn't come and he couldn't speak anymore, as his emotions were running high...As were mine... Our Dr took the phone and talked with me... She told me that he was very sick and he was at high risk of internal bleeding... if he was get a bump he may bleed out very quickly and it was not safe for him to drive from her surgery to our home (20 min drive) to come and get me. She said that they had called the ambulance and he would be going straight to the hospital. She said that she would hang onto our keys and when I could get a lift there she would talk with me too...I started to cry heaps...I called our Church women's organisation president right away. As I was preparing to attend a group lesson on how to crochet. (very old fashioned I know but my mother used to do such beautiful crochet work and I really wanted to learn... Also secretly I really like those crochet hand towels with the buttons that you hang in the kitchen... but shush that's a secret) I thought that someone there should be able to help me out. She asked me if I had looked up his drugs on the internet for side affects. And she said that someone would come to take me to our GP's soon... As soon as I got off the phone I got on the computer and typed in his reflux drugs to see if the things that had been happening to him was some known side affects... It did say that they could alter blood counts... I was hopeful that was what it was...