Friday, October 28, 2005 3:56 AM CDT
Hello Family and Friends,
well I hope that you all got to read my important update before this and if you haven't, please go to past journal entries and read it cause it will help you understand my direction with decision making and so forth.
Well, I told you about my past and recent chromosome changes and mentioned that both Alan and I believe that Jesus does not intend for us to go down the road of transplant yet. There has been much discussion with various doctors over this subject and for certain reasons we are going to wait. My blast count is normal under 5nd so far I have everything to live for. Transplant, for certain reasons is not the best option to me right now. And for sprirtual reasons, we strongly do not believe that NOW is the right time. If God changes that then we will look at that. However, I am finding a marrow donor since I actually don't have one. Just in case because Jesus doesn't want me to be unwise....and we feel that this is right. However, transplant is constantly on my mind....and all the emotions that come with FA are constantly in the back of my head.....but I have made decisions 11 years ago not to transplant because of certain reasons that I cannot explain...and I wasn't sure if with this recent change, whether that would change....however, it has not changed and I am praying that the Lord will give me many more years ---- I am believing for healing.
Anyway, when you have something like FA...you are constantly trying to beat battles spiritually and medically. Three years ago we had Isaac, our son and we have an outlook on life...that FA will not get in our way. Jesus has blessed us with a good life and will guide every step taken whether it ends up with a tranplant or not. Remember that Jesus is the head over our lives, not the medical world and that there have been amazing miracles performed by Jesus that the doctors cannot explain....why not with FA....YES!!! I am not disregarding that everything that is going on is not serious. Many of you know how serious I take all of this stuff...and how it affects me emotionally. Our eyes are open wide to the possiblities of what can happen to me with FA and my marrow and everything else that they talk about. However, we are trying not to let that affect our outlook or approach on life. Obviously FA plays a big part in our life, but we don't want it to rule us no matter what happens. That doesn't mean you make silly decisions...all decisions made are made after months and months of deep thought, discussions and consultations and prayer.
Alan and I long for another baby amongst all this and my doctor advices that we do all that now rather than wait...Reason being that if I ever needed to transplant, better to have the baby before than after, and do it while I am well....and I am well....we have been praying about this and feel it is the right direction. You may have questions, "but you have chromosome changes?" "what if you die"....well, yes, I have had chromsome changes for 11 years and I will continue to monitor them and my blast cell...if it goes up above 5..we will need to consider transplant......and I am not focusing on the death...however, I know the reality of FA like you do...and we have thought about that too.....if anything ever happened to me....we would like Isaac to have a sibling - so he can have support rather than be an only child. Alan and I have spoken in depth about all this....and we have gone through it with doctors and counsellors...you never make a decision without consulting everything...I did that even with Isaac.....I am going to live my life happily...and so is my family...so amongst threats and turmoil, there is joy and peace and love... my family, my doctors - they all support me and most of all...we feel what Jesus is telling us.....oh, I am not pregnant - I just wanted to share as an FA adult what issues you do deal with...it is way different to a child.
Now enough of all that deep thinking. Sometimes it makes my head hurt so much because I consider all this so much. My toe....I wrote that my toe was red and sore and has been for a number of weeks. The GP wanted to give me IV antibiotics and they thought it was cellulitis....but I went to Dr. Ben on Monday, my haematologist, and my toe actually has burritis...an infection of the pocket of fluid that lubricates the joint in the toe...that is why I can't move my toe. We are trying 3 weeks of oral antibiotics. I know that IV can be quicker, but for certrain issues we are tyring this first. I have had oral antibiotics for a total of 2 weeks now and my toe actually looks better. The swelling has come down a bit and it is less angry looking. However, Dr. Ben did say that I shouldn't be surprised if it flared up every now and then in the next couple of weeks because it was a very aggressive infection. If we don't get rid of it all, I suppose we can do IV. You see, this month I have dealt with so many feelings considering my brother's death (he had FA)....that I get very depressed in hospital, very depressed.....so we are trying to decrease that time. In Australia, we are very aware of the whole person. The emotional side is deemed just as important as the medical side. So sometimes when you may think "she should be in hospital or have IV"...there are reasons you may not know about as to why I am not. Why do I write and say this....may be this will help people understand what goes on in our brains as patients. Hope all I said doesn't sound judgemental because it is certainly not meant to be. I tend to write exactly how I speak. HA!
It is my brother's 11th year anniversary of his death tomorrow the 29th October....he died in 1994 after a transplant. I love him with all my heart.
To add to my toe, I actually have come down with a flu bug the last 2 days. HA!!! I actually get sick very rarely. But whenever I am really down emotionally, I seem to be more vulnerable. Also, we are trying to balance my IVIG infusions at the moment. They think I am getting too much of a peak with the infusion and then getting low over the 6 weeks too fast......so I will have a blood test to check my levels and they are thinking of decreasing the IgG, but doing it 4 weekly so I have a more even spread and therefore, less vulnerable to infection. Make sense? I know what I mean.....hehe.
Ok, well, that is certainly enough "update". I pray that you are all well and will update again soon.
Bless you all and love you,
Charisse
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Sunday, October 16, 2005 1:22 AM CDT
**New update**
Monday 24th October 2005
Good Morning,
I am going to leave the last update on here still for a while so I know that everyone has had a chance to read it and know what is happening with me.
Please keep me in prayer today. I have an appointment with my haematologist today at the Women's and children's Hospital with Dr Ben. I have been feeling nervous and a bit stressed about this all week...all last week...and I had a "not so good" weekend with depression and anxiety. There are a lot of issues I will be discussing in regards to my marrow.....also I just get uneasy cause it is where I grew up with Fanconi Anaemia..and where my brother died...and it has been 11 years since he died this Friday..so I feel a bit emotional.
Also I have had an infected toe for over a week and it isn't healing. It looks like cellulitis...and they wanted me to have IV antibiotic last week..hehe..but I have been holding out cause I didn't want to go to hospital cause I feel too emotional at the moment..so I have been praying the oral antibiotics will work...ha! My toe it STILL bright red and sore...hmmm..we will see what Dr. Ben has to say about it today.
Anyway, got to go.
Love Charisse
**End of update**
Dear Family and Friends,
As most of you know everyday I face the battle with Fanconi Anaemia, anxeity and depression. Well I am going to share with you something I have not shared before. Somthing that I have not shared because it has been a part of my life for a while and I never thought of sharing it with you guys. Then when something happened this year, it brought it to mind again. Then I felt reluctant to share because I felt like I would be judged by so many families and thought of badly. Some of you may not understand why I have made certain decisions and some of you may think I am stupid and not making the right decisions.....I don't know....it scares me to think of how I am viewed sometimes.....and I am being honest in saying that because that is how I feel. But if I share from my heart, may be you will all understand my position.
Here goes......for the last 10 to 11 years I have had chromosome changes in my marrow. I had my first chromosome changes about 11 years ago. It was a shock back then. We all know that research states that chromosome changes/clones are all likely to eventually lead to leukemia or MDS. Therefore, medical specialists often and most always reccomend a bone marrow transplant early on in the peace while you are well in order to have the best outcome with the bone marrow transplant.
We also know, through research, that chromosome changes/clones will not necessarily lead to leukemia unless the chromosome changes are accompanied with MDS or increased blast count. For those of you who are not aware, there is a certain percentage of dysplasia that deems it to be called MDS and a certain percentage of blast cells that make you leukemic or normal or in the grey area.
Now I have explained this.....so my cytogenetics results 11 years ago revealed my first ever encounter with chromosome changes........but no MDS and all normal blast counts.....my marrow slide was viewed and my marrow is in excellent condition. After talking with family, praying and waiting for an answer from Jesus, we were able to make the decision that transplant was not an option that we wanted to consider right then. This is where I need people to understand that I have made decisions based on so many things in my life.
You see, I am a born-again Christian and believe that Jesus has told me that He is going to heal me completely from FA. This might sound crazy but I believe that He has spoken to me. Not only that, but I have had many pastors who do not know me, or know FA......give a word to me from God concerning my healing that I believe Jesus is gradually completing. I don't know how else to explain such a thing to you than......I believe, I have heard and I will trust no matter what happens..........
Well, I have lived with no consequence to my marrow with chromosome changes for 11 years...Praise God...He has done so many miracles within me......the doctors said I was probably infertile, I fell pregnant within 1 month.......I am married, I am a registered nurse, I have had great counts, I have loved life.......God has done many miracles in my life and I believe that I have beaten odds that they have down on research about FA..........I want you to understand that despite the chromosome changes that I have had over the last 11 years, Jesus has sustained me and I have followed what I know He has told me and He has kept me safe and performed amazing things in my life....not just with FA but emotionally and spiritually. I would be writing a huge essay if I told you about everything God has done.
However, that doesn't stop me from being human. It doesn't stop the tears.......and the sadness and the fear that comes over me sometimes. This year I found out that I had a recent chromosome change. And it broke my heart. I didn't share that I had a recent one because I was so afraid that people would judge me and think I was silly to not throw myself into a transplant. I knew of people who had experienced their child having changes and were now going to transplant and I thought they would think I was an idiot for not going to transplant myself.
You see transplant is a very sore topic for me. My brother died after transplant....I saw all that he went through.....I had a doctor tell me that in 10 years from 1994 this would be me......what a huge, terrible, most destructive thing to say to a child.........that in 10 years that would be me. I will not accept that...even though it has now been 11 years since then...I do not accept that negativity in my life.
Please, I don't want to make anyone cross.......medical staff....doctors, nurses and anyone else are there and are to be used by God to help in the healing process of diseases....but these people also can bring destruction into people's lives through what they say and proclaim over someones' life and that is wrong. I am a nurse myself so I do not believe that I am being judgmental here.......I work with very unwell people who have cancers and stuff..............
I do not think transplant is wrong.......It scares me to death!!! HA!!!! But I know that my Jesus has spoken to me and I feel and know and have always thought that transplant is not for me and that my Jesus will heal me.
Going back to my recent chromosome changes......I was shocked and I am still very shocked and scared. This has been a huge battle for me the last 3 months especially. The good thing is that my marrow is not MDS or leukemic. I have slight dysplasia which is so normal for an adult with FA. But it is not MDS at all. My blast count is under 5.....and that is normal......so I am not leukemic. The doctor said that he is amazed by my marrow. He told me that my marrow is in great condition still and that the cells are very efficient...there is no sign of aplastic anaemia........it is not leukemic....but he is concerned that my marrow has withstood so many changes...he is concerned about when it will start to complain about these changes.....and he means by that...when will the dysplasia go out of control, the blast count rise....but they can't tell you that. Because of my huge, emotional issues and anxiety they are concerned about me having a transplant because they do not want my emotional health to be soooo scarred. And that can happen. A person may have a transplant, but if they experience so much emotional stress during that, the person can go down hill. I have issues with doctors examining me...huge issues that I can't go into...huge things that make me collapse when I am confronting it...I have a physchologist to work through all this but it is huge...........I get concerned that you may read this and think.....but you are silly, you need to have a transplant............and then I remember at camp, Mrs Frohmeyer, I hope you don't mind....but when there was a discussion about transplant and there were parents questioning what was right for a child.......you mentioned that one thing that is right for a child, may not be necessarily right for another...and that there are circumstances that will make a person decide if transplant is right or not............and I totally agree..........there are circumstances that people would not even know about that make us choose the decisions we choose and no one can judge.
Now I was alarmed by this recent change.....I was alarmed heaps.....so I understand how you want to kick and scream and feel so much dread when a change happens......the thing is that now my platelet count has dropped......I usually sit around 115 000 consistently and I became very alarmed the last couple of months....last 4 months or so that it has been dropping...oh it dropped to 60 000 one week.....and I freaked.....it then went back to 90 000 and then 70 000 and then 60 000.......you see this is totally NOT me....I am not under 100 000 at all usually and so I have been concerned. I know that the doctor said to me that the other way that you can see chromosome changes having an affect on the marrow is a decrease in platelet count. So you can imagine how I have been feeling....."oh, no"....but then it is too early to tell...there could be other reasons for this...but it is still scary.
However, I still cannot deny my Lord. I still cannot deny the voice that tugs at my heart telling me that "what healing has begun will be made complete"..........I do believe so strongly that Jesus has spoken to me and that He will heal me and I cannot deny that. Oh, I feel very upset and have been very depressed lately but I cannot turn away from the fact that Jesus is faithful and when He promises something He always fulfills it. Jesus never promises and then doesn't fulfill.... The Bible says that Jesus will always fulfill what He has told us. I have no problem with that. When I start to be afraid and panic and think, "oh no, it is not going to happen", I call out to Jesus and remind Him that He has promised me healing and can He please show me, give me insight because I am scared. This moring I was feeling a bit scared and then my mother sent me a verse from Ephesians chapter 3 verse 20
"To Him who by means of His power working in us is able to do so much more than we can ever ask for, or even think of: To God be the Glory in the church and in Christ Jesus for all time, for ever and ever! Amen"
Alan and I are not being unwise. Just because we believe that Jesus will heal me completely does not mean that we turn a blind eye. Jesus never wants us to be unwise but to use wisdom. So we are prepared to go to transplant if Jesus tells us to do that eventually. We will have everything planned just in case....but we will never go to transplant unless we know that Jesus is leading us that way. I do get scared and think, this is it......but Jesus is bigger than FA. Jesus is bigger than statistics and He can heal whenever He wants to. Some people are healed immediately and others are healed in God's time.....we don't know why........so I am asking you that you don't place me with the FA statistics but that you join together with me in fighting this disorder because I know that nothing is impossible for God....I know Jesus is faithful and always carries out His promise and I know He has spoken to me.....I have no idea why this is happening and why...but I have to trust God.....it is very hard to do but when I talk about it I cannot stop telling you about how I know this and that Jesus is bigger than FA.
Please understand that I do have times, lots if times when I feel grief over FA and what can happen....but Jesus does have more power and I always feels empowered when I lean on Him.
He is in control.
Love Charisse
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Sunday, October 2, 2005 3:49 AM CDT
***UPDATE Sunday the 9th October***
Hello, thanks to all of you who check on me and pray for me. I have been having a hard time at the moment. Yesterday, in the morning I even wrote to my friend saying I was feeling positive and unfortunately the rest of my day was a mess and I was so depressed that I was crying and crying. So, Alan and I asked my sister and her husband to babysit Isaac while Alan and I went out for tea last night and caught a movie as well. We really needed some time together. It has been a hard week and when you feel depressed, and Alan had been interstate a short while, I felt like the pressure had been on and needed a break. It is so hard to function properly when you feel this way...and depressed.
Well, I went to church today and Jesus is one Almighty God. He is awesome. Since I was in the USA back in August I really feel like Jesus has been speaking to me about a few things.....I feel very humbled before God. We as human beings do not deserve His grace and mercy.....I do not deserve His grace and mercy but because Jesus loves me, He has been merciful and shown me grace in so many ways. Firstly, I have accepted Jesus and He has given me salvation and saved me....I did that when I was 5 and have never regretted it. That is the first amount of grace and love He has shown me. Then as I recall how upset I get and sometimes angry with those around me and myself when I am severely depressed I think about how I don't deserve His grace, mery and love, but He gives it anyway and forgives me of everything. I sat there, today, in church, listening to the worship, listening to God's Word and felt great love and gratefulness towards Jesus. And I just thanked Him and the tears just flowed and flowed. I took communion and realised, again, how great a sacrifice He has done for me and I cried and felt so humbled before Him. You know the Bible says in Romans chapter 3 verse 23, "For all have sinned and fall short of the Glory of God".......we have all sinned, we all don't deserve His grace and mercy but because He loves us, He gives of it freely. That is awesome. I would never survive if I didn't have Jesus. I am so grateful to those who help me when I am having a hard time and when I get grumpy because I am depressed and not coping too well. lots of you have to endure a lot and I am both sorry and grateful for you having to do that. So, if you read this and you are one of those people. Thank you. I publically thank you from the bottom of my heart and have been reminded today, of how precious grace and mercy really is to me. Thank you.
Please still keep praying for me on this walk of faith. I am believing that Jesus will heal me of fanconi anaemia and depression. I am learning a lot on this walk of faith but it is so hard and sometimes I feel so pulled under that I need others to hold me up. So please keep praying.
Love you all,
Charisse
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Sunday October 2nd
Most of you know that I suffer from
anxiety and depression on and off.
I had a hard time last weekend cause I was so tired and I thought I was improving but this weekend I am feeling so sad and depressed.
I really need your prayers so I start to feel better about myself. When it comes down to this I find it so hard to explain how I am feeling and I use my techniques to help my thought processes but sometimes, when you are depressed it is so hard to lift it.
God is great.......I don't deny that at all. I think I am having a down period again and need help to be lifted out if it. It happens every now and then.
Hope you are all doing fine.
Love Charisse
