Bone Marrow Biopsy/Aspiration DONE!!!

Hello All,
well Isaac has been attending school for 4 days in a row the last two weeks. Usually they have a Wednesday off as a rest day and go to school on Mon, Tuesday, Thurs and Friday. Wednesdays has now begun as school day...except the last 2 weeks we had public holidays in both weeks for Easter so he didn't end up going 5 days a week yet....still only 4 but 4 in a row without a rest. He has been really tired. Next week will be his first 5 day week at school without a rest! I wonder how he will go. I know they get used to it. Isaac came home from school complaining of a sore tummy. He actually was picked up by nanna while I was in a doctor's appointment and was given a chocolate biscuit and some milk....and then he said his tummy had been full and sore from it. He has had so much chocolate during Easter I wouldn't be surprised if he has a sore tummy! We limit the chocolate, obviously...BUT it is still there and he is still eating more than usual...I think we need to limit it more.

So yesterday I was making Isaac his dinner....fish fingers and some brocholi. I didn't do too much because he looked so wiped out. When I turned to tell him his dinner was ready, this is how I found him........check out the picture below......



He was fast asleep. I tried waking him. Understand it is 6pm and I have not done anything for him....not brushed his teeth or given him dinner...nanna bathed him for me so that was very nice...otherwise I didn't have him in his P.J's or anything but he was so tired he just fell asleep. This is just aside the kitchen on the floor, by the dinning room table...hehe. Because I have had the bone marrow biopsy and aspiration just a day and a half ago my backside hip was too sore to life him off the floor while supporting myself and my belly, where I had the operation, is strong...but not strong enough to support my whole weight because my hip is sore. No matter...I left him there until Alan turned up from work....either Alan or my visitors who I was having for dinner....Isaac's nanny who has worked with us for ages and her boyfriend. Alan turned up and help me change him into his P.J's and I decided that later I would feed him yogurt when he was semi awake....brush his teeth and stuff.......so off he went to bed at 6pm! hehe

Today he is heaps tired again and he slept right through to the morning....oh actually he moaned a lot last night and cried. He was still asleep. He would groan his legs hurt and he had a mouthful of yogurt but cried and didn't want anymore. Then at 1130pm I heard him crying and went in the room and he had thrown up all over his bed and was continuing to do so! So Alan cleaned up (good on ya Al!!!!) and I bathed Isaac from the stuff being all over him...we changed his bedding and re-brushed his teeth because he had a yucky taste from vomiting and he went back to bed.

Today he looks washed out and not himself. He doesn't have a temperature but he is so tired. He asked me to help him colour in something at about 4pm this afternoon so I sat there and did it....asked him if he wanted to snuggle me while I helped him and he nodded....10 mins later I look down and he is fast asleep on my chest! So Alan carried him to bed and he is now still asleep. I better wake him soon so he can have dinner and then go back to bed....he is obviously not himself...OR completely washed out from school...but I am sure he is not himself as he has not been eating today....not wanting stuff!

I had my bone marrow biopsy/aspiration on Wednesday just gone and have not got any results as of yet. Thank the Lord the biopsy is done...I hate them....but now I have to get the courage up to hear the results! However, I didn't really enjoy my biopsy experience this year. I usually am at the same private hospital every year but that closed...well the day surg did and is being re-done so I was sent to another one...but with the same doctor and anaesthetist which is a bonus for me. However, one of the nurses who admitted me there was an old collegue from my hospital where I work...I used to be a boss to her at work...one of the head Registered Nurses...and the admission didn't go too well. I won't explain it here but I became so anxious that I started crying and shaking AND walked out saying I wanted to go home and wasn't having the biopsy. There is a deeper reason to all this anxiety but one reason was that I had not disclosed anything to my collegue about my FA or pre-leukaemia and bad anxiety issues or patient issues and here I was being asked questions about myself from her and I don't really want her to know...it was too personal...and then when we needed something and she refused and I got anxious...I was SO embarrassed and wanted to go home...anyway...in the end the nurse co-ordinator came in and sent her out and Alan spoke with her and the thing that was the problem was fixed because she "didn't realise our circumstances" and I relaxed and I didn't have to finish the admission with this other person...it was a really awkward situation for me....some people you do not enclose personal things to when you are at work....working as a registered nurse..,.it is too personal and I was not comfortable with the situation...and had a lot of anxiety because of the biopsy and circumstances and FA and everything...and then when she said it won't help to talk to the co-ordinator...well Alan insisted and it DID help...we were able to do things the way we were suggesting because they didn't understand before! I didn't enjoy the situation or the embarrassment....I didn't enjoy being that anxious!

Yesterday I went and saw Dr Smiley at the hospital where I work. He is Isaac's paed but helps me out too...and he said that I shouldn't feel weird about what happened...as in how I feel because I have a disease that puts me through so many horrible procedures and stress...nurses and doctors need to try and decrease any unnecessary stress for me...I don't need to be going through stress that is unnecessary and he encouraged me that I have been so much better at controlling my anxiety!

Anyway, I got through the procedure and feel better than I usually feel. My platelets can go up and down dramatically ......really weird...so I wanted to avoid any bone bruising......so I asked for a pressure bandage and I think that helped. I have had bone bruising one year and it took months to clear up and was very painful!!! I feel much better this time. When I say my platelets can jump...I mean like be 50 000 in difference from one week to the other sometimes....so I don't assume they are high or low.....some people can jump like this. SO I would prefer to avoid the bone bruise if I can even though the platelets may be really high!

I did lap swimming for about an hour the day before my biopsy. I am trying to lap swim once a week to get fitter from the surgery I had and generally, be fitter. I swam for 1/2 hour constantly doing laps and then the last 1/2 hour I intermittently swam laps and rested and did walking through the pool and exercises. I was quite tired afterwards....I couldn't understand why I didn't fall asleep that night...I was awake until 6.45am that next morning..the morning of the biopsy. I must have been SO anxious that night...yet I felt calm....just anxious. I read my book for a lot of the night and was on the computer and stuff...and tried to sleep but just couldn't. I didn't want to have a huge anxiety attack about sleeping which is why I kept myself busy. I am sure my lack of sleep didn't help with my anxiety at the biopsy.....what a relief I went to sleep straight away that night!

I should find out initial results from the biopsy...the blast count and stuff (ooooohhhh...I am scared) this week sometime ....at least from one lab. The big transplant lab which is the one I usually trust....may be held up a bit. It has been VERY busy. Then the cytogenetics which is chrcomosome changes and stuff....will be in about 4 weeks because that part of the lab is backed up.....however, they will push through emergencies first. Since I have chosen not to treat this with transplant, so far...those going to transplant and looking at treating are first in line..which I do understand. The initial results will tell me if I am in more danger than I was before anyway.

So Please do pray!

I have so many other things to tell but I can't.........
We are packing to move in 3 weeks...mum gave me some photos of the new house which she had so I will upload them in my next update!
Love you all and thanks for the support.
Charisse