Saturday, April 29, 2006 6:05 AM CDT
Good Evening!
Just thought I would give a quick update.
Saw my haematologist on Monday just gone. I was a little stressed at this appointment...I think just winding down from the appointment with the transplantor. Nothing new on my blast count or other counts.....I still Praise God that the blast count is down to 6% from 14%...but know there is a long way to go yet in working through all of this.
One thing though...even though we don't know if we will go ahead with transplant....I now do have a unrelated matched donor who would be ready in 4 weeks time. However, we have not decided on anything and are waiting for God to guide us further.
Unfortunately I had that nasty reaction with IVIG infusion last time so my next infusion in one week has been delayed for another 3 weeks. It has taken me a long while to recover so if it happens again this time...they think admitting me and giving me appropriate pain relief will help....also....changing my IVIG product to one that may not affect me in this horrible way...I had what they call "aseptic mennigitis"...it is not an infection but nasty inflammation of the brain. It was not nice.
Today Alan, Isaac and I went to Marialta Falls. We had a picnic lunch and walked to the one of the waterfalls. Isaac did very well because he walked the whole way...was carried half way back...but he thoroughly loved the outing. I think we were walking for 1.5 hours! It was beautiful and made me feel so refreshed! Now, haha...my legs are SO sore!
So that would be all I think.
Bless you all,
Love Charisse
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Sunday, April 23, 2006 5:25 AM CDT
Hello All,
I have great news! My blast count is down to 6%!!!!! YES! I know this is still not under 5%...but it is sure a LOT better than 14%. At the beginning of the year...well in February I had my bone marrow biopsy/aspiration and it showed a blast count of 13%....I had a second biopsy and aspiration in March to confirm it and it came back at 14%. To be honest I was feeling absolutely terrified about this whole pre-leukaemia thing. Oh, I still am quite scared about this. We have been on such a journey with FA and with our faith in Jesus...believing that one day Jesus will heal me completely...not because we made that up but because we honestly know that God spoke to us about it a long time ago. I have been waiting on God. A transplant was never a decision for us because of certain things and because of what we believed God had planned for us...then we got the high blast count and I didn't know what to do....I was terrified...and we have been doing bone marrow matching and planning in the background for transplant. But it is so hard to plan for a transplant when my whole being does not feel it is right for me...and I don't feel one ounce of peace about it(even though medically I need it). We have been praying and praying for breakthrough...for God to show us the way and if you remember we went to a Christian Conferencec a few weeks ago and God spoke to me powerfully there. I was so depressed at that meeting because of the circumstances...so afraid....and I have to be honest....because of certain issues...transplant has never been recomended for me and emotionally I just have had so much trouble handling it all. At this meeting God reassured me that it is ok to be afraid and that everything is under control.
Anyway, the transplant team decided to take the same sample again ( not a new one) and re-check it....and it came out at 6% and they are pretty certain with this result. It is not a new sample...it is the old....and I know people could try and explain why things are different....I myself, being a nurse, know that you have human error and all sorts of things.....but 6% is very different to 14% and I am very pleased with that. I still have lots of decisions to make....FA is still here........I still have to look at transplant in the background while waiting on God...but God is showing me the way and these results are a sign from God...it is God who has done this....there has been a LOT of prayer...you would not know how full on it has been. Praise the Lord.....
So, yes, I met the transplantor for the first time on Friday. I didn't know these results then...but I was very scared. I don't handle meeting doctors very well because of things that have happened in the past with them...causing post traumatic stress...I won't go into it. I had prepared myself for this meeting for ages....and what do I do...I go completely quiet. I was so nervous and so anxious that I ended up in complete pain. I couldn't bring myself to even face the transplantor in the eye and I couldn't get my mouth moving and my brain went completely dead. Alan had to do all the talking for me. Praise the Lord I didn't faint...but the whole time I was petrified of this guy who was actually quite nice I think...(from what I saw through my anxiety). He didn't try and touch me or do anything....despite him keeping his distance I felt very traumatised over the whole thing and very threatened! I really have difficulties with new doctors....especially talking about transplant!
I was just wanting to get my repeat blast count and I was scared that he was going to say it was 18% or something (even though I already had the results to this slide at 14%)...my mind played so many tricks I was just so scared. Finally Alan said, "what are the results? Charisse is frightened that they are worse than what she already has"...and I heard him say, "well she shouldn't be"...and then I heard, "they are 6%"...of course...I couldn't believe how they had suddenly changed from 14 to 6%. I know that for FA.....any type of blast count is dangerous and chromosome changes can already make things complicated...but I hope someone appreciates the fact that a lower blast count is less complicated.....I did smile once or twice at the guy when I managed to but left totally in a blur.....
Anyway, so that is my news.
Also, I ended up having to have 3 days of higher doses of prednisolone to get rid of the brain inflammation that I had from my IVIG reaction. The headache is still in my right eye and temple.....but heaps better now. Praise the Lord.
The calcified lump in my breast that we were supposed to be doing laser therapy had to be put on hold as we just investigate the slight risk that laser therapy can have on FA and chromosome breakage...just checking...but the evening primorose oil that I am taking for the pain seems to help a bit...it apparently starts working better after being on this for 6 weeks to 3 months.
Tomorrow, Monday...I have a regular haematology/oncology appointment.
Otherwise it should be an eventful week with a public holiday on Tuesday for Anzac Day!
Anyway, that is my update and I will write again soon.
Little John..it is good that you are home! Praise the Lord!
Bless you all,
Love Charisse
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Tuesday, April 18, 2006 1:33 AM CDT
Hello All,
I hope you all had a very Happy Easter! I did. In fact I am amazed that I have had such a good Easter cause I have had a bad infusion reaction since last Friday - a week a go.
So, on Good Friday we went to church. My dad and mum are actually the Senior Pastors of my church. My church is an AOG (Assemblies of God) church and it is mainly black African. It is a mixture of different African backgrounds and Australian background as well....multicultural. It is a cool church and I love it. Ps Ralph Legge (my dad) spoke on the 5 supernatural things that happened in the 3 hours that Jesus was on the cross. It was an excellent sermon and very inspirational. Thanks dad...it really got me thinking about the authority that was shown on the cross...about the miracle that Jesus did.....about the Victory that we have when we chose Jesus to be our personal Lord and Saviour in our lives. We had communion and that felt extremely significant after the sermon. After that Alan, Isaac and I came home and had Hot Cross Buns.....hehe...for those of you who have never heard of Hot Cross Buns...they are a sweet yeast bun that has the symbol of a cross on top....not icing...something else....symbol of the cross Jesus hung on kind of....they are great and here in Australia..they are a tradition at Easter time!
That night we had a BBQ with mum, dad, Liesl and Tim (my sister and her husband)...it was also dad's birthday on Good Friday...Happy Birthday dad....you have been the best dad ever and God knew what He was doing when he gave me you as my dad! I love you.
Saturday we just relaxed and I slept til 12 noon! Yep, I was still struggling with the infusion reaction. It has been awful this time! In fact I have had tears over the pain I have been in. My haematologist tells me that it is like "meningistis" without the infection...so inflammation and all with the brain but no infection....I have splitting headaches that none of my pain relief...even the big pain relief...it won't get rid of it. My neck is so stiff and sore and my whole body...well....I am in pain. I am amazed that I got to church on Good Friday and on Easter Sunday. I have now had this type of pain for 7 days. It is bad and even now as I write...my poor eyes are so affected...but no one would know I feel this bad by just looking at me. So my haematologist thinks I am through the worst of it...but if it does continue then we can give me high doses of steroids for a couple of days to stop the inflammation. So I can say I will be calling him soon if it doesn't settle down some time soon this week. So please pray that this goes! It has been hard to do things feeling this way.
Praise God for His grace and mercy though! I still got to church on Easter Sunday! Praise the Lord that Jesus is alive! HA....we got Isaac the "Jesus" movie for children and he sits and watches the whole thing....he asks questions all the way through...what a sweetie.
Sunday was good. The children's choir sang a beautiful song, the sermon was inspirational and the worship was great. We also did an egg hunt for Isaac in the lounge room and it was so sweet to watch him be so excited!
Yesterday was a grim day! Ha...Easter Monday...a public holiday. We made plans to go to a wild life reserve with friends and family. It rained all day and we still went....hahahaha...you should have seen us having a picnic in some shelter while the rain poured down....we took one short walk around the place and went home...at least Isaac got to see the big cats.
This week....I was supposed to have my flu shot but I am waiting until this reaction goes away.
On Friday is my "meeting" with the transplantor here in Adelaide. Just to meet him and get some more results. I am very nervous about this. So please keep me in prayer. This is just one of our steps in everything going on so far.
Then Monday next week I see my haematologist again.
Alright...I have a very big headache and need to go.
Love you all,
Charisse
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Saturday, April 8, 2006 7:04 AM CDT
Hello Everyone,
despite the situation with the marrow...life does go on. I have days when I feel depressed and struggle to do anything and then I have days when the "marrow issues" means nothing to me and I look at my beautiful boy and my darling husband and just enjoy life. I can tell you that "it is well with my soul"....I love the Lord Jesus even more than I ever have before. He is my strength and my love and my peace. I still know that He is bigger than FA....."It seems like, but it is not"....a line I will never forget from the Christian Conference I went to. The Nigerian Pastor preached about difficult circumstances....when it seems like you are in a very difficult situation and you don't think it is going to end well.....God turns it around and uses it for good....so what it seems to be for us.....isn't really because God is in control...hmm...don't know what you all think about that...but I have had that line and sermon engrafted in my heart and mind since then. It really impacted me. I will keep allowing God to teach me...and He is gracious to me when I cry and feel weak...for it is then that He makes me strong....God is amazing in all that He does...His ways we will never understand...but I know that I can trust Him no matter how I feel about myself or the situation...I give all the praise to the Lord...to Jesus Christ...Easter is coming up...a time when we remember the great sacrifice that Jesus made on the cross...by taking all our sins and giving us the opportunity to repent and ask Jesus into our lives...making the way for us to have a close relationship with Jesus/God....I could never live one day without this close relationship I have with Jesus.
So what else has been happening? You know that breast infection I had ages ago...it all started 12 months ago after my son bit me while having some intimate son time (he was only 2 years)...and I got mastitis and it lasted heaps long and had several courses of antibiotics and antifungal and so on. Well it has been getting worse and worse...I have had pain down my arm and up my neck and all sorts of areas on the breast....I found a lump and had an ultrasound....and eventually I went to a breast surgeon this week. She did a thorough exam which I didn't enjoy cause I am always so anxious....but when she touched the spot where the lump was...I almost jumped through the roof! Ouch!!! I was in so much pain....well the ultrasound showed definite calcification caused by necrotic tisse from bad mastitis 12 months ago...the lump is calcification....thank the Lord! I have been SO worried about this.....believe it or not I have actually been more worried that the blast count for the moment...but I feel much better now. So I need to start laser therapy to break up this lump and open the prostaglandins of the breast and heal the breast and then ....NO PAIN!...What a relief after 12 months of pain...surgery should not be needed. Also I am starting Evening Primrose Oil which is good for breast pain. So that is that.
On Friday just gone I had another IVIG infusion. My last levels showed normal levels and if it keeps this up I can stop. I am dealing with another reaction this weekend that I don't like....but I will be ok.
Despite the reaction Isaac had a birthday party to go to and I was able to get there.....Alan drove and I just had to sit there but it is always a joy to watch your 3 year old have so much fun with other kids.....SIGH....I really want to have another baby. I want Isaac to have a brother or sister. I have not given up on these dreams. God knows my heart.
I am waiting for more test results...more bone marrow and more bloods......
Here comes the scary part....I am meeting the transplantor for the first time in 1 week and a half....it is just a meeting...nothing else and getting some more results that we have been waiting on...I am scared to death! Ha...another doctor to meet and I feel vulnerable. I should not need to be scared because he won't do anything to me....but I feel frightened...but because of what God told us a couple of weeks ago at the conference...well we are still waiting on Him and taking things slow....and God directly spoke...I mean directly...and you cannot go against God no matter what you think or do...my loyalty and love is for Him...there is no one else in the world I trust...but I need to meet this guy and try and not faint or collapse...he won't hurt me...I am afraid of that...I am afraid he will violate me and hurt me. But Alan will be with me and he is nice apparently. This is a milestone for me! Please ...FA community I need your support and love as I go through this journey...and I thank you for all the support you have been giving ...but it is so important to me...I love you all so much.
So what else? Isaac's paediatrician is so supportive and is looking after me ...I will be catching up for a counselling session with him this week and my GP as well...and Dr Ben..my haematologist...he really cares...I have great doctors...I am really blessed ...they are doing what is right for me and also encouraging me in my faith in God...they tell me that Spiritual things are sometimes more important than medical things and doctors need to remember this sometimes before they get ahead of themselves. This is a blessing when the medical folk acknowledge that there is a greater power than themselves that they answer to and I feel blessed I have these doctors.
I want to take some time to thank some VERY special friends.
Teresa, Tyler and Emma....you guys go beyong the call of duty to help me emotionally and as friends through this rough journey. We love you guys so much and pray for you all the time. Please know you are so special.
Donna, you are a woman of great beauty...you go through so much but still seem to shine in every conversation we have...continuing to encourage me in the ways of the Lord and yet giving me that balance of advice and help physically when I need it. I love you dearly...you have a special place in my heart.
Joanne Ho...we talk almost every night on Instant message and I love your friendship.....I look forward to it everynight ...you are also an amazing woman who has blessed my life and I pray for you so much.
Joan, the talks we have mean so much to me and your unconditional love...thank you.
Judy and Little John. you guys show so much love and encouragement to me....and I am glad Little John is doing well. The Lord has kept his hand on him. I love our friendship. You are a blessing.
Well, that is all for tonight..there are more people I can thanks....like John Hanna..who is a friend who just accepts me and I can talk to ...thank you.
Becca, thank you for your love and care and helping me work through things and always being there for me not matter what.
I love many of you and could go on and on..but this email is so long already.....
Oh Kristin, you have played a major parat in my life by trying to understand my anxiety and encouraging me to feel confident about myself..offering your friendship and love and accepting me for who I am ....
Thank you to all the FA families and prayer bears...Krisstina...you touch me with your warmth and lovely friendship...I love you.
Well, now I am tired...but thank you for reading my journal and please stop by in my guestbook ..it really helps me feel encouraged.
Lots of love,
Charisse
