Friday, April 27, 2007 5:56 AM CDT
Hi Everyone!
Wow, I have not updated for a little while and I am having trouble remembering where to start.
Oh yes, Brooke, Paul and Jasper came around to visit us from Western Australia during the Easter break. Jasper is a little younger than Isaac and has FA. They got along very well and were playing together...both very hyperactive that day..but it was a good visit and we enjoyed meeting Brooke (thank you!) and Paul (Bless you!) and Jasper. We had dinner together and just hung out. It was good. It is always nice to meet another family with FA in Australia...we are so few and far between.
It has been school holidays and Isaac was sick for the first week....he ended up needing antibiotics...so we were not able to do any planned things for the first week....however, the second week he has been well...and we have done some special things. We had a play date with his kindy friend...and met the parents...that was nice. We have another play date tomorrow with a church friend coming over to play and Isaac got to go to child care (which is a treat for him)...on Tuesday just gone. Actually it was also nice for me after him being sick all last week because I got up in the morning and was able to take my time and treat myself to an hour long bath...nice hot bath...then I just got myself ready and had lunch and spent a couple of hours out at my girlfriend's house...that was nice...and I didn't have to run after a child. I really enjoyed afternoon tea with her. Then I came home and cooked tea...un-interrupted (if that is a word). Alan picked Isaac up. He was there all day so he was tired but he had fun..and then another girlfriend popped by and yeah, it was good.
I have some appointments coming up. I have a haematologist appointment in a week...my infusion on the Friday..oh and they are re-testing me to see if the UTI is all dealt with.....
Otherwise, just moving through life. Did some more singing at church last Sunday and really enjoyed that....
It was my mum's 60th last week and my sister and I were working on a scrapebook for her birthday....it worked out really well. My dad's birthday a week before...so busy with birthdays...my birthday is in 3 weeks...wow. I will be 29!
Thanks to everyone who gives me and shows me support. I really appreciate. Sometimes I get so down...very down...so my heart feels so much joy when I see people's notes and feel their support. So thank you.
Ok, well I am going to go and relax for the evening. I will catch you up on things later!
Love Charisse
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Sunday, April 8, 2007 0:43 AM CDT
Happy Easter to All!
On that note I do realise that there are many people who are having a very difficult Easter and my heart and prayers go out to those people.
Please pray for Little John...John Smith....his mum, Judy, let the FA group know today that he has needed to go on the ventilator because his lungs were not being so good...he has FA and had a transplant a little while back. Please pray that they find out what is wrong and that he pulls through ok.
Life has been a bit rocky in areas since I last updated. A couple of things have not been related to FA and are of a personal nature to our family.....it has been really stressful..but I can see that God will pull us through...when I really think about it I can see Jesus in the situation....I can tell you that there are many, many times that I feel helpless even with this situation....but I can still see God being faithful to both Alan and I and Isaac.
On the medical front. I had a fever and have been feeling fluey for about 8 weeks and was starting to feel very depressed with this feeling and it has been sapping the energy out of me...so I had an infusion done a week ago...and some bloods....also the specialist thought to test for a urinary tract infection. You see, I have not been having any pain in relation to that type of infection....the specialist asked me to follow my temperature 4 times a day and record it and we did the test for this infection. Well my temp has been a low grade temp almost all the time...so they thought about a low grade infection that is not manifesting itself properly because of marrow suppression...my general white blood cell count has dropped the last 2 counts .....anyway, I do did have a urinary tract infection...the infection was not high grade and hence why it has been not giving me pain and only strange fevers ....and the wbc has been low because it cannot deal with it....so I started antibiotics for it a week ago and am hoping that my temp chart will show that I no longer have low grade fevers ....and that I will feel better. It is a bit hard to tell right now because this week I have had an infusion reaction...which makes me feel very flat and have painful legs and headaches...and blurry vision! It was so bad that I had trouble reading the prices of groceries at the shops the other day. Last night i had a bad time of it. I was awake imbetween 2am and 6.30am with pain....Alan was pretty much massaging my legs the time that I was awake and I was quite distressed.
I have also been working on an item to sing at church for Easter Sunday and was terribly upset that having no sleep would keep me home today.,...but I am amazed that I made it to church and still seem to be ok...just completely exhausted and still in pain.....by God's grace I managed to sing the item with my sister and Alan (we did a trio)..and I was proud of myself.
Now, I need to force myself to lie down and have a rest.
Oh...more dramas since I have updated...there are quite a number more but I won't share them all here.....
Last Thursday when we got home we noticed our cat, Matilda, was hopping on 3 legs...her back leg...I can't remember which one right now...hehe ...that shows I am tired....one of her back legs was tucked up...I thought, "oh no" and had some dread. We took her to the vet and they told us she had been in a nasty cat fight and had puncture wounds all over her thigh...antibiotics and some pain killers...come back home and she should be right after the weekend....nup....come Monday she was still very lame in that leg....took her to her vet and he said that there were scabs all over her....but they were healing and she needed an x-ray to rule out damage to her pelvis...not sure if she was hit by a car or something.....my pulse quickened....only recently it feels like we had to say goodbye to our beloved cat, Jemima.....Isaac was emotional with that and he remembered that Jemima went to the vet and never came home.....Matilda had to stay the night and he said, "mummy, why can't Matilda have a big bandaide and just come home?".....I told him that I wish it was that easy and that she had to have a picture taken of her bones in her leg and we will see how she is tomorrow...you see we don't have the money to do surgery...like put a pin in or care for a cat that needs lots of money...so I was dreading any news that may mean saying goodbye.
That night I literally cried out for mercy from God....I know it is just a cat to some people..but not to us....the next day it was good news....it was a break...at her knee....but clean and still in alignment...do we want to set her leg....no surgery......we could manage that...she is only 3 years old and so we put a cast on and she should recover 100% So she is confined to a dog cage in our dinning/living area for 6 weeks. She cannot get out....take her out for a quick cuddle...but complete bed rest! Talk about caring for another baby! She has been getting better at dragging herself around with the cast....missed the kitty litter....I am a clean freak and so have felt very anxious about mess....also I don't clean the cat litter and mess because it can be dangerous with marrow suppression and some bugs that can come in litter trays.....the ablutions...hehe...so Alan does most of it...if I do need to do dit when Alan is not home....I wash very, very well...but we try and avoid me doing it when we can...so far she has only messed one time when I was home without Alan....and my nanny helped me clean it all up....in fact she did the majority of it because I had to hold Matilda and she was not confident with handling the cat......we did it together.
Yesterday she managed to get her stuff in the kitty litter..,..what a relief!!!!
Anyway, this is only some of all of stuff...I know she is not a person.
Other medical stuff. My blast count...ready to share.....last year the second count for my blast count when re-done was 6%....5% and under is normal...so 6% is considered in the leukaemia side of things....this year the count came back at 7%....so about the same...not much change.....I had two counts done this year as well....one lab came back at 10% which I was not happy with at all....and then the second and more experienced lab came back at 7%...I know not heaps of difference but better and the count is about the same. That doesn't mean that I am happy. I know how serious blast counts are with FA and leukaemia.
I have to be honest. We will monitor this carefully like we always have...but I need to be honest. Right now Alan and I don't feel like God has plans for us to attempt transplant. I don't know how anyone feels about that....this decision would be made right now in full knowledge of how quickly FA can deteriorate....there are many reasons why we have not attempted transplant earlier with my marrow chromosome changes....and I would never be able to explain all the details....each time we make a decision we make it with the full knowledge of how serious FA is and I go through a grieving stage and really struggle....but you know...I struggle more with making a decision to transplant with the age that I am...with being a mummy and with the desires that I have to keep living life to the full. I hope you guys understand when I say that. There are some things I....Alan, Isaac and I would like to do as a family if we don't choose transplant this year.....we want to live it fully...and this is very important....now I am not giving a "goodbye" speech at all...just letting you know where I am at and I will fight even if I don't do a transplant...I have always been a fighter........but I praise God that He is looking after me and helping us make decisions that are right for us.....of course....we have done the look for a donor and have looked at preparing for a transplant....so I don't have to make a final decision that I never will....I can still turn around and do it...but it is something I strongly do not want to do right now...strongly....and that is all the explanation that I can give...but we will always monitor the marrow so we have a choice and so we can have full knowledge and be wise with what is right for us.
I hope I have not shocked people with that...I felt like I needed to share.
John Hanna, Alan and I are thinking and praying for you as you have your surgery.
I have written so much and need to rest.
Please say a prayer for all those FA children out there who are having difficulty...those who are struggling after transplant, those who have not had one.....those families where someone has already passed away...please pray...FA is horrible...I always have to tell myself that God can do miracles as well.....so pray....it is really worth it. I have already seen major miracles in my life and it spurs me on and gives me hope.
Ok, gotta go.
Love Charisse
