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)

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!

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!!!

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…

The thing is you may be experienced but you need to realise that you are dealing with peoples loved ones and when you do not give a reasonable explanation... just 'you know what you are doing'… Well it’s not good enough!!! You can’t toss people aside like that… There is a lot of emotional attachment to the treatment of a patient… and if you do it to my husband you do it to me!!!

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

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...