Tuesday, March 28, 2006 10:42 PM CST
***April 1st Saturday.***
Well Alan, Isaac and I went to the park today and had a BBQ lunch. There were ducks to feed and grass to play on and play equipment and all. I had been looking forward to this family outing and we did have a good time. Then just before we left Isaac chipped a big amount of his left front tooth on the slippery dip and we had tears. He was so brave. We had to go and check if his other teeth were loose and check that his gums were ok but I had the piece of tooth in my hand. Poor Isaac screamed at the dentist and bit the dentist's hand. He had sharp edges on his tooth that he bit down into his lip and it needed to be filed so that it was more blunt. Cause he was so upset...they could only do it a little bit. When we got home he was so tired and in reasonbly good spirits...he went to bed. But that is when I felt devastated. Isaac has beautiful teeth and I was so upset. I cried and cried and cried...literally. I know I got a lot on my plate right now and may be that explains the deep grief I have felt over this tooth being chipped. Alan has tried to convince me it will all be ok...and I know in the long run this is not a huge thing....these are his baby teeth...but for some reason it doesn't make my emotions calm down. I have felt upset all afternoon about my baby's teeth. Anyway, Isaac was probably more brave than I would be. And we don't want him to think the dentist is bad or anything. So that is our excitement for the day. May be I will feel better about it soon. Isaac still is gorgeous. But I feel so upset about his tooth! The emotions that we feel as mothers!
Love Charisse
***
Good afternoon All,
Just wanted to let you all know where I am up to. I recieved my bone marrow results back and the blast count is still the same...still around 13 This is good that it has not gone up...but bad that it is still there. Obviously this is still a dangerous situation. The results still indicate that I am pre-leukemic and need a transplant very soon...like straight away. However, when I saw my haematologist on Monday, the bone marrow tests were being done by other pathology labs as well. Blast cells can be easily confused and so therefore, we are waiting for different labs to confirm this test result.
So what am I going to do? Those of you who know me would know that I have never had a peace about transplant for myself. This has not changed and we continue to work through this situation.
Bone marrow matching is still being completed and preparing for a transplant being done in the background at my own pace. This does not mean I have made a decision for transplant.
The anxiety I have had over this has caused me to feel depressed, have trouble getting out of bed. And I wish I could get to some type of decision where I feel that we are doing the right thing. The problem is that I know...my whole family knows that this is a serious situation. I am aware that this is serious.
I have always talked about my faith in Jesus. I have always said that I will never make a decision to do something unless I have the peace of God about that decision. Transplant will always be scary no matter what...but God can give you a peace about that decision even if you still feel freaked out and I, nor my family, have that peace.
We have believed that God will do something in my life. I can tell you now that last week when I got these results...I panicked and I said to my family...."I have no hope anymore...I have to go to transplant...please have me sedated from the very beginning and let them wake me at the end...therefore...if I die...I will wake up with Jesus and if I don't...I won't know about it at all". I was having so much trouble with feeling overwhelmed......
Well, I still believe that God will do something in my life and He has already confirmed that.
This past weekend we went to a Christian conference in Sydney. I am not going to give details in my journal. But I will say, without a doubt, that the God touched me powerfully this weekend just gone. I went to that conference depressed and upset and feeling like there was no hope.....Jesus is real. I saw the power of God with my own eyes. I saw paralysised people get up and walk and many wonderous miracles just like in the Bible days. And God spoke to me...without a doubt and my heart has been filled with hope. God gave us direction about what to do next in this situation that we are in and I feel confident in Him...confident in Christ...confident in His guidance. Thank you Jesus.
So, we will continue to wait on Jesus and trust Him. This is a serious situation....all the more reason to follow what Jesus wants us to do....and balance that with the medical advice. God is the one who is in control. The doctors can be used by God...but ultimately...God is the one who guides you and tells you what to do.
Please remember us in prayer and please sign the guestbook if you come visit my website....as I need all the encouragment I can get at the moment and it makes me smile when I see someone has written.
I pray that you are all going well. And if you too are in the middle of a serious situation..I pray that God will be with you and guide you to make the right decisions that are specific to what God and the doctors are telling you.
Bless you and I will update again soon.
Love Charisse
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Tuesday, March 7, 2006 6:22 AM CST
***update 15th March Wed***
Hello All,
no results yet but I am having a big case of the nerves. Also, went to the GP today and have a probable chest and sinus infection...please pray I recover quickly. I don't feel the nicest...especially at night. Please keep me in your prayers.
***
***Brief update 11th March Saturday***
Hello All,
I have been recovering from my bone marrow biopsy the last week....plus my infusion reaction which has knocked me about this week. I have not been really well and now I have some chest cold that I am trying to get through. That is so annoying because I had no sign of being sick before my infusion and biopsy and now I hate it when I feel like my throat is swollen, glands in the neck feel swollen and I have a sore chest and a cough. So on top of being really sore from the bone marrow biopsy (which I have had 23 or so biopsies in my life), and an infusion reaction...I also have this stupid cold thingy. I have not yet got my biopsy results back. I am nervous about it. Please pray that I feel much better this next week and have recovered well from these procedures and what ever bug I seem to have. Bless you all.
Love Charisse
****
Hello Everyone, this is Charisse.
Over the past 4 weeks Alan, Isaac & I have been dealing with some new develpments concerning my health. I finally feel ready to share but yet feel extremely anxious in sharing this with you guys, my family in FA.
For those who don't know me I am almost 28 years old and was diagnosed with FA at the age of 7....began on oxymethalone and prenisolone to keep my counts up which have remained in the normal range for a very long time. I was able to conceive my son Isaac who is now 3 years old...he was 3 months premature but very healthy.
For those who are unsure, I have had chromsome changes in my marrow for just over 11 years now and each year after doing a biopsy we, who have a strong belief in Jesus, believed that a transplant was just not right throughout those times.
In February this year I had a rountine biopsy and it showed that my blast count has risen. Now a normal blast count is under 5nd I have been under this sitting at 2 to 3 or years and my marrow has had great cellularity and great efficiency.
We were looking at extending our family with another child when we got this news. My blast count is 13.indication of the development of leukaemia. A blast count of 20 r over is considered leukaemic and it could be a matter of months that this rises. As you can imagine, even though FA is unpredicatable and we know all the things that can happen with FA, we were prepared that this could happen with FA, considering I had chromosomal changes as well. I am grateful that the Lord has allowed me to get married and have a child who greatly blesses me.
However I am human and feel grief just like anyone else and have had major anxiety...especially when it came to sharing with the group.
I want to share about our strong faith in the Lord Jesus Christ. At camp last year I sang a song about "Love goes on".....and it was about how while anything could happen, Jesus is always there for us and always caring for us and will never leave us alone....I sang that from my heart believing that for me as well. I am determined that this will not beat me and with Jesus I can get through this regardless of the statistics.....God is my faith and hope and I have confidence in Him. However, being human I have been having collapsing spells while filled with anxiety.
Isaac is my miracle sent by God. He is helping me keep life normal.......I am still enjoying the gift God has given me. I am still working as a registered nurse because I am fit to. I am still being a mother and a wife......as an adult...these things spur you on and my faith in Jesus lifts me over the storm.
But this is hard.
We are looking at options for me....we have been looking at transplant. Donors are being confirmed..,.research to do a stem cell transplant if I choose to go ahead...is all being put into place. The transplantor here in Australia is in contact with the leading FA specialists and transplantors and we will be doing what is best for me. We still believe that God can heal when it is in His will and His timing...but we are still waiting to confirm that transplant would be right for us...knowing too well the risks...but miracles do happen and while researching and setting up transplant we will never let go of the fact that we believe that God still has a life here for me on earth.
Please I hope this doesn't discourage you too much. I am almost 28 years old...what a journey I have made and I continue to plod on. We are making decisions to preserve my reproduction should transplant be chosen.
this is hard on us.......so please give us support...and those who I talk to all the time and share with...I am determined to see you all again. We had a repeat bone marrow biopsy done today and await the new results for a weeks time. This is a nerve racking time but also a time where we have spent in prayer and leaned on the Lord.
I feel well and look well...this is just another part of the journey to trust God and work through. Please know that there is always hope, for your children also.
Thank you for reading this...this will also be in my journal and please feel free to write something. I love you all so much and I am determinded to get through this.
Bless you all,
Love Charisse
http://www3.caringbridgecom/oceania/charisse
