Friday, November 25, 2005 5:27 PM CST
Happy Thanksgiving to All!,
good morning everyone! I hope you are all having a wonderful Thanksgiving. As you all know I live in Australia and we don't have thanksgiving in Australia because it is an American holiday. It is to do with American History and so I suppose it makes sense that America celebrates it and not Australia. However, it has been an honour to learn about the history behind Thanksgiving as many of my dear friends have explained and enlightened me on this...yes, before this year I have never been sure what Thanksgiving in America is all about. I have seen it on TV and my parents used to be in America for a while...so I knew I it from them...but it is only just this weekend that I have understood it properly. So thanks to all and I pray your holiday is great!
I am still getting better. I have still been lethargic. Simple things take my energy away. I have still been having people help me during the day so I can get the rest that is needed. Thanks to Denise and my mum for helping me...to the dads for understanding and a deep thanks to my husband for sacrificing time off work to care for me. To me that is a big thing and one that I am truly grateful for. Thank you. Alan, you are great with Isaac and a wonderful father and husband, dedicated to our cause and challenges that we always seem to face on this road of Fanconi Anaemia and life's road. We continue to trust in Jesus for a miracle and for guidance on this walk of faith. Please continue to pray that my strength gets greater and greater so I can have less help from people. It is frustrating to not be the "woman" of the house and need help, but it does teach me to be humble.
My white cell count was down with my last test. I have had a test since but I don't know the results yet. I may be starting a slightly higher dose of prednisolone to help boost the counts since my "flu" bout....and what a relief it will be to boost the neutriphils a bit so I can have a bit more strength and less mouth ulcers.
I still have some mouth ulcers. They have healed really well so far. The haematologist said that it would take 3 weeks from when I saw him and it has been about 2 weeks. They are very close to being all gone. My gums are still soft and red and bleed a bit. I still can feel pain but it is much improved. So I expect with another week and more rest, taking it easy....my mouth should be close to being better. Fanconi Anaemia patients are slow to heal but we get there.
My toe!!! My toe is a chronic infection and since my neutriphils have been low is continues to remain there. With the type of infection I have .....it needs 2 to 3 months of low dose antibiotics rather than a week of IV antibiotic. We are waiting for me to be a bit better before we start the type of antibiotics....the ones that fight staph infections...they give me some gastric problems and so we wanted to wait til I felt stronger before I endure this.
Otherwise, things are improving and I am starting to feel a lot more joy.
However the other night I had a bad night's sleep. I tossed and turned from 12am to 3am and then was awake until 4.50am....fell asleep, had a nightmare or 2 and woke at 5am scared stiff and was then awake until 6am. I didn't have much sleep at all. Even though I slept in, in the morning...it knocked me around that day. Luckily Alan stayed with me that day because I was exhausted and felt very unwell. I ended up going back to bed in the afternoon and sleeping. The next day I slept in until 1130am....I must have been so tired I think!
Well, once again...thanks to the two mums who have helped, the dads who have understood and my lovely husband who is always trying to do what is best for me. I love you.
Bless you all and have a great Thanksgiving.
Love Charisse
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Saturday, November 19, 2005 3:46 AM CST
Hello All,
first of all.....There are NEW PHOTOS AGAIN....Alan and I were reminising tonight about the "old days"! HA! I found some pictures of me at my 19th birthday and Alan and I were dating at the time. Alan and my engagement party and I added a picture at my bridal shower with my mum and I ...I was dressed in a toilet paper wedding gown created by my friends for me...pictures of my brother, Shannon, who also had FA and died in October 1994....he had a transplant that year. Shannon and I were really close and he was a terrific guy...always so happy! Also I have added some photos of Isaac when he was first born and also of him a lot younger than now. Most of you would know he just had his 3rd birthday on the 8th November...so to look back at his photos and remember is wonderful. He was born at 27 weeks gestation and weighed only 2 pound 2 (950 grams). Enjoy the photos...I think I look younger...obviously I am younger!
Anyway, update on me so far. I saw the haematologist this week and he expects that I will take a little longer to recover from this flu bug. I had it severely and I am still trying to build up my strength. The ulcers in my mouth are still bad but improving slowly and he expects them to linger around another 3 weeks considering how sick I have been and how my white cell count dropped from the illness...it should pick up again soon though.
I had my gynae surveillance this week and that went really well....everything looked clear with the coloposcopy and hysteroscopy and I am waiting for the pap smear results.
I had an IVIG infusion yesterday, had my usual reaction, stayed in hospital overnight and now I am home again....still feeling off...but with a positive attitude that I will improve. I know this infusion helps my immunity so I am grateful for it even though I never enjoy staying in hospital.
Well, I am going to go for a small walk to a house in our neighbourhood that has Christmas lights all over....with Isaac and Alan and then I am going to take care of myself again all night, get an early sleep.
Bless you all and will update again soon.
Love Charisse
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Friday, November 11, 2005 2:07 AM CST
Sunday 13th november
**UPDATE**
Well, as I said below..Isaac had his toddler party on Saturday. Below I talk about his family party. NOw I am going to tell you about his toddler party and I need to add some more pictures I think. There are pictures in the photo section of Isaac's parties. It went so well. I was so surprised at how well all the children held out for the party. Isaac was the oldest. All the others were about 2 1/2 years old. Isaac had 4 friends and that was busy enough for me. He opened presents and showed his friends his bike that he got earlier on in the week. They played parce the parcel. That was so cute. These toddlers wanted to keep ripping more than one wrap off and were so excited when they got a gift from it. They all danced on the wiggle's mat and a little African boy was the best "bouncer" so he got a prize. They rode around on their bikes and cars outside, went up and down the slippery slide, tried to catch the bubbles that Alan blew from the toy saxophone. They all loved the train cake that Alan made! Alan did a great job of the train and Isaac was so pleased with himself as the children sang "Happy Birthday"....the kids wanted to sing it twice and Isaac beamed as everyone cheered while he blew out the candle with help from daddy! What a day! The whole party went for about 4 hours and I can say that I was positively exhausted at the end of it. My mum and mother-in-law were there to help...and bless them and Alan...I have still been so lethargic...that they did a lot of the heavy work...thanks to both the mums and Alan. I think I did extremely well considering how unwell I have been. Anyway, so that is some of the excitment. Well, bless you all and have a good week.
Love Charisse
**END**
Good evening,
just a quick update. Isaac's party went so well. He was so cute opening his PRESENTS as he loudly and excitedly exclaimed. His face was comical...he loved his veggie tales DVD's and his new bike, his Bob the Builder torch, Wiggles mat, big tonker truck, book piano and so on....ha....not all from Alan and I....have to remember that there were gifts from Aunties and Uncles, and grandparents and all.....Isaac loved the family party and most of all he loved the BIRTHDAY CAKE!!!! He looked so cute as he stuffed the mud cake in his mouth and then said with a mouth full, "more cake please".....ha ...it was funny. If you read this and the pictures are not on my site yet...I am in the process of getting them on....so give me a little moment.
Also to update.....my dear old toe is still a bit red but looking better...nothing showed up on the x-ray and no arthritis or anything...bloods showed inflammation but that is normal for how red my toe has been....looks like it is getting better...so we are leaving it for now.
On the flu front....I have been "not feeling well". Oh I am much better than last week and my throat is still much better...but at late afternoon and early and late evening I still feel fluey.....I ache and shake and feel real bad. I need to feel well. it is starting to affect me emotionally now. And the last couple of days I have broken out in ulcers, literally, all over my gums ....causing ear pain, headaches, neck pain, gland pain....I feel miserable! My wbc count was only 1.2 which is low for me and neutriphils are at 0.7.....I actually was surprised that they were not lower considering how this flu has knocked me about and all the ulcers I have. I am still so lethargic....tomorrow is Isaac's toddler party and I am still having it. I would be so depressed if I missed it because I am sick...so I need to just pamper myself and take care of myself during it and get lots of sleep tonight. Please pray for me. Please pray that I will get well...I know I will feel better once my immunity is up again. I have an IVIG infusion in one week and that will help in the long run.
Also, think of me next week as I go for my gynae check up that us FA patients do....I have a pap smear, a coloposcopy and a hysteroscopy....pray that they go well. I have it under anaesthetic because they cannot get in there easily......I am a bit different. I have nothing wrong with me...this is just survelliance. Please keep me in prayer.
Love you all,
Charisse
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Monday, November 7, 2005 2:48 AM CST
Hey!
Thanks for the prayers...my throat is MUCH better...I have finished my antibiotics...the liquid stuff and my chest is heaps better as well....I still have a nagging cough but nothing to cough up ....so that is good. The doctor thinks the flu virus is out of my system but I am left with the recovery stage...and with this flu...I have found out that it can take up to 3 weeks for someone to recover from if they are NOT immunosuppressed! I still feel faint and get shaky and hot when I am walking around too much. My energy is very limited but I have managed to keep myself out of bed in the last 2 days...in the afternoon....and just be on the couch! YES!!!
Anyway, so I am hoping, with help, to improve daily...I ahve my mum coming here to help me with Isaac and she is basically caring for me while I haven't got much strength...then back to the usual routine. Thanks mum! Thanks also to Alan's mum who has been coming regularly as well. I appreciate it all!
Tomorrow is ISAAC'S BIRTHDAY!!! He will be THREE!!!! We will do presents at night when Alan is home from work and my family will have tea with us....we will have some snacks and a birthday cake and present opening....should be a relaxed night and I shouldn't have to exert too much energy at all. So Happy birhtday my dear son...you are a credit to your mum and dad!!! Bless you heaps!!!
On Saturday we are having a toddler party. It was planned before I got sick and I cannot cancel it...I will just have to take it easy. I will tell you about that later.
Love you all,
Charisse
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Thursday, November 3, 2005 7:06 PM CST
Hello,
as I said in the last update...I haven't been well. The flu is going around our state at the moment and it is not nice. I have had the flu for 7 days which is viral with a bacterial chest and throat infection. It has been so bad that my throat closed and I couldn't get any fluids or antibiotics down.....so they changed me to liquid antibiotics and I managed to sqeeze that down. My throat is less swollen now and I can actually eat with pain. I still have blocked ears and feel weak, faint and have fevers...however my glands are less swollen.
I am sorry to those who I have not been able to check your websites...I am exhausted and just need time to recover.
I thought that I had been lucky to miss out on this bug while over in America...my brother-in-law had the flu while I was gone and he was SO sick with it...doesn't just make immunosuppressed people really sick.
On Tuesday my son will turn 3 years old. When I am feeling better I will tell you all about it. I am praying that I will feel better by then.....4 sleeps to go.
Bless you all and bye,
Charisse
Wednesday, November 30, 2005
Monday, October 31, 2005
October 2005 entries
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
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
Friday, September 30, 2005
September 2005 entries
Wednesday, September 28, 2005 7:11 AM CDT
It is Wednesday night and I am feeling improved compared with the other day. Tuesday my mum came and looked after Isaac and I had a sleep in and then today I was back on my own again but in a better state of mind. I still feel tired but I am getting there. I just have to make sure I get to bed early.
So today we had kindergym and Isaac loved it. He ran everywhere and climbed on all the equipment.
Then I went to a friend's house and she has a 2 1/2 year old and Isaac and him played together. They wrestled!!! It was Soooooooooo cute! They were laughing and pulling each other down and stuff....Isaac really needed the interaction! Then I came home and Isaac had a sleep while I did things around the house, emailed and read my Bible.
It was a good day. So now I need to get off to bed! I need to make sure I am relaxed.....please still keep my emotional health and physical health in your prayers.
Lots of love,
Charisse
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Sunday, September 25, 2005 11:54 PM CDT
Well, it is Monday and I don't feel like it has been the best day. It is Monday here in Australia at 2.30pm. I just was never able to recover from the sleepless night on Friday night and so Sunday, I was so nauseated...I had to miss church...Alan and Isaac still went...and today I woke up and felt so unwell and tired that I had to ring mum and dad up and get them to take Isaac for the day.
I lay on my bed all morning and couldn't stop the tears. I felt so bad that I had to send Isaac off with my parents. He has been just wanting me all the time but he seemed happy to go with them.
I am still in my PJ's......I just need to feel good again.
Thanks to my friends who have chatted with me over the phone or any other way.....who have helped me feel better. Thanks to Alan, my husband, for being patient with me when I am crying on the phone...my anxiety sometimes rears its ugly head and then it just flows out!
So I am going to have a bath and feel better....but I still feel so unwell and so guilty about feeling this way. I hope Isaac would not be cross at me about it. I love him very much....and I wish I could stop crying. Boy, I hope my week gets better.
Bless you and love you,
Charisse
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Friday, September 23, 2005 9:46 PM CDT
Good Afternoon,
well just a short update to let you know how life is going.
My mouth ulcer that Dr. Ben looked at...he gave it 2 weeks to heal and then we were going to biopsy it.....well it is healed and gone!! Praise the Lord!
Another thing to rejoice over...well for us anyway. Isaac has begun toilet training the last 2 weeks and last night was the first time he ever has done a poo in the potty! I wasn't there...but Alan was. He sat on the potty....and did a poo! When he got off the potty he was scared of the poo and started screaming and yelling, looking at the potty freaked out and all. He was rewarded with praise and his favourite muslie bar! I will use stickers more now...thanks to the person who mentioned that idea....was it Sandra? Anyway, he is a bit scared of the potty now but that is ok because he will get better again. Doing a poo in the potty can be kind of scary for a child.
Yesterday I worked an 8 1/2 hour shift at the hospital. I was in day surgery and I really enjoyed my shift. I usually do most of my shifts in Theater Recovery. It was so busy and I was on my feet all day. I worked from 11am to 7.30pm.. Usually around 6pm my body says, "I am tired and switching off". Well, I suddenly felt tired at that time but I managed to push myself. I don't do night shifts because my stamina can't manage it. But I was very happy with my shift....some interesting things happened but they are confidential.
I had a bad sleep last night though. I got home from work and we did devotions with Isaac and he went to bed. I went to bed around 10pm and turned the light off at 10.30pm. I had high anxiety for some reason and my mind started to have very clear visions of the women's and children's hospital where I go to see Dr. Ben (also where Shannon died). I started to get heart palpitations and breathing difficulties and my mind rehearsed me having a full on anxiety attack and so I tried to stop my mind and focus on other things. At 1am I woke Alan and he tried to relax me by rubbing my legs.....I then continued to try and sleep but by 3pm I woke Alan again and then all my anxiety came out. we were up until 5am with all my anxiety. I am very tired today. Please continue to pray that the things causing me grief will get worked out.
Ok well I need to go. I have a 1 year old birthday party to go to with Alan and Isaac.
Bless you all and bye,
Charisse
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Sunday, September 18, 2005 11:44 PM CDT
What a day! It is just an ordinary Monday but I haven't enjoyed my day much at all. Isaac is toilet training. He is a good boy. We have only been trying it for a week. So he is only into the stage of learning to sit on the potty without being frightened. I am sure that I have annoyed him today and he has annoyed me. I love my dear darling of course. He has done well to be less afraid today. I try and make it fun! Hehe!
Hehe...I feel grumpy today...well I have felt grumpy the last week...not because of Isaac but because of certain truths that a woman must endure....and I am sure Isaac looks at me and thinks, "what's up with you mum?" and then tries and makes things a bit more difficult for me in everyway.
He is getting restless with the rainy days and wants to get outside and play. It is just not possible today...so we played lego. He is in bed now and I think I will rest too after this.
Yesterday at church was wonderful. We had a visiting Pastor speak at the church. His name is Peter Franz. He ministers in Uganda and other regions of Africa. My church is 90 frican here in Australia and so they enjoyed having him here to speak. He has been blessed with a healing annointing from the Lord and so when he asked for people with "blood disorders" to come up for healing I marched right on up. I sure do believe in the power of the Holy Spirit to heal the sick and I wasn't going to miss out. I felt such a humbling before Jesus and kept thanking Him and thanking Him. I had an amazing time with God. I truly can feel His presence greater these days and I would never want to be without Jesus...and I am trusting Him for the healing of FA throughout my body. I know Jesus can heal. I have seen Jesus heal people with AIDS in front of me and I have witnessed them show their before and after medical tests....God is truly amazing and I trust Him with my life.
So please know that there are specific people I am praying for and have on my heart....I will remember you in prayer. With God nothing is impossible.
All right, well, I am now going to go. I pray that you will all have a great week.
Love Charisse
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Wednesday, September 14, 2005 4:36 AM CDT
Good Evening,
Well, I actually did quite well in my appointment with Dr. Ben. I have had a nasty ulcer in my mouth for 2 weeks. It started when I changed toothbrushes and my gums were irritated and it got so big I was a bit concerned about it. So I let Dr. Ben have a look and he thinks it looks like an ordinary ulcer and explained what potential canerous ones usually look like. He gave it 2 weeks to heal and if it isn't healed then we will do a biopsy to check for what infection it could be and of course, that always rules out cancer as well. But since Monday, my ulcer is smaller and not as sore and is healing up. So I am pleased about that and I am being real careful as I brush my teeth so I don't re-open to ulcer and let it heal.
I was able to finally talk to Dr. Ben concerning some other issues as well to do with the gynae. I had never told anyone and after hearing the gnae lecture at camp sunshine I suddenly thought about my issue and realised that after years of enduring such a thing it could have probably been fixed....Dr. Ben was very accomadating and will speak to my gynae doctor about it and may be we can help my issue.
I was disappointed that my platelets are jumping around a bit. I always feel uneasy about all that......but platelets do tend to jump around a lot, especially if you are doing 6 weekly blood tests with the IVIG infusion I have. When I used to have bloods every 4 to 6 months, you wouldn't see the jumps that the platelet count does and you never would have known. Every thing else is about the same. I was pleased with my cholestrol....I have had a cheese craving lately and have been crazy with cheeses...hehe...glad my cholesterol is till well within normal levels.
I still found going to the Women's and Children's very hard but Isaac was with me and amused me heaps....even though I had a lot of anxiety I did well. Dr. Ben asked me if I would be able to try coming to the clinic in Ronald McDonald House instead of the ward...I said I didn't know...I felt a bit panicked about it actually...so I will let him know...another thing to overcome.
There are still issues I am dealing with in relation to FA. Please keep praying for me. I think we will always be dealing with issues but this one is a big one.....and as I have said before, feels big and overwhelming for me, but nothing is ever impossible with Jesus or too big for Him.....so I will continue to trust in Jesus. I am desperately asking the Lord on certain subjects at the moment and I know He hears me. God's grace never fails.
Donna and Nicholas...I am thinking about you guys as you try the oxymethalone. I pray that this drug is a wonder drug for you as it was for me.
Ok, well life goes on. Isaac is busy trying to get my attention so I am going to go.
Bless you all and good night.
Love Charisse
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Sunday, September 11, 2005 8:53 PM CDT
Hi Everyone,
today is Monday for me. I have an appointment with Dr. Ben today. I actually thought on the weekend, "wow I feel ok about my appointment" and then something happened and I have been in tears about FA stuff and my appointment today. Once again I have felt extreme anxiety prior to my appointment and it is hard to hold the tears in.
My brother is very close to my heart at the moment. We just celebrated his birthday recently and he would have been 25 years old had he still been alive. I went to his gravesite and broke down in tears. I feel it so strongly...the hurt and love I have for him and the grief that I then realised, once again, that I am dealing with.
So it is off to the Women's and Children's hospital again today for my appointment and I feel broken as I go facing the hospital where so many things took place. How much longer will I feel this way?
There are so many issues to address with my appointment today. We will address certain issues from the FA Camp.
I just don't like going to the doctor who facing certain things, talking about stuff.
Anway, Jesus is with me all the time and so I will walk with confidence. I know that Jesus is doing a healing work in my marrow and whole body with FA all the time. I will continue to trust in Him even though I sometimes feel sad.
I pray that you are all having a good day or night.
Bless you and talk soon,
Love Charisse
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Thursday, September 8, 2005 5:46 AM CDT
Well, I have shared about camp but not about our time in Oregon with the Cliftons.
It was a relief to not have to fly to Australia the week after camp. I don't think I would have handled such a long flight...so we just went 8 hours across the country to Portland, Oregon. We stayed in a hotel in Aloha. We holidayed with Teresa, Tyler and Emma Clifton. It was good. The first day we just slept in and then went to their house and left on a short drive to see the scenery. The greenery was beautiful. It was so green. In Australia it is not so green, especially in the summer time. So I was fascinated by the trees and how lush it was.
The second day Alan and Tyler went shooting at a gun ranch and I stayed with Teresa at her appartment. We had Emma and Isaac with us and we just took it easy. After a huge week at camp it was nice to go slow. We went to the park and the kids played. They played so nicely together. They had to copy each other. At the park they sat on a swing together and laughed as they were pushed. Isaac loved the company!
Later that day Teresa, Tyler and Emma took us to see Emma's hospital and the huge air bridge that it has. I can't remember whether I have put photos of that on the website but the hospital has a beautiful view on the mountain and I was fascinated by how children friendly the hospital was...hehe..now it is a children's hospital so you ask me why was I surpirsed? Our major children's hospital in Adelaide is more medical looking and I think the set up at this American hospital was great....I am also a nurse and love other country's hospitals.
We also went on a day's long outing to see Mt St Helens in Washington State....that was excellent and you can see the mountain in the pictures I have postered here. It is an active volcano and it had steam coming out of the top. I could smell the supha and feel the heat from it. we drove to the furtherist lookout. We were so close to it. I then saw a show on this volcano back in Australia and was pretty pleased to announce that I had been there in person. Hehe.
We went to Oregon zoo...what a cool zoo....and even cooler than ours here in Adelaide. I liked the marine creatures and bears because you got to see them in an aquarium type setting as well as from the top on the outside. That fasinated me....that is where we got the pictures of the seal lions...if I have posted them that is.
And...we saw the fabulous waterfalls....they were great and so huge. I bought some things from there for my famliy. I think there are some photos of them on this site. That was lovely...and then we visited with Rachel Altmann and Nina who has FA (she is 2 I think....HI Rachel, Nina, Benjamin and Tyler). We had a great time there. I loved their house...wow!! We haven't got houses like that where we live! It was so nice spending more time with you Rachel. You are a lovely person.
Oh, Rachel, Benjamin and Nina also came with us to the zoo that time.
Every night we were taken to a different restaurant to get a taste of the variety of food in America. We went to Chinese, Mexican, Italian, had pizza...even the pizza taste different! Teresa cooked for us a couple of nights and she is a great cook!
A good time was had by all and it was a shame when we had to leave. We only could stay a week and then we were flying home again (only to accidently leave our hand luggage with sercurity and realise last minute and almost missed our flight..hehe).
Anyway, once again i have chatted too much. So I am going to go and relax.
Bless you all,
Love Charisse
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Sunday, September 4, 2005 6:07 AM CDT
Hi Everyone,
sorry about the lack of updates since I have been back from America. I have only been back one week and I have been so busy catching up on everything.
I just put Isaac to bed so I think I have time to chat now for a while.
First of all, our 2 weeks in America, the first in Cascoe Maine and then Portland, Oregon....were both good weeks.
As per usual, excitement tends to follow Alan and I around so the excitement and adventures of what lay ahead started as soon as we left Adelaide airport.
Isaac still enjoys bottles with milk in it...not to carry around but only to enjoy with his breakfast,lunch and tea. If you forget these bottles, he will often get upset so they were very important to Alan and I. Already our dramas began when we arrived from Adelaide to Sydney in Australia on the way to America. We got off the plane to board onto the international flight to LA and realised that we had left Isaac's bottle bag with his bottles in the previous plane. Poor Alan ran so fast to go and get the bag...of which we did get hold of. Our Adelaide flight was running late and so we were late getting on the plane for LA. As we were fumbling onto the plane I asked for some help and the air hostess said, "what's wrong with you?". I was shocked! I had never had an air hostess ask me such a ridiculous question before and I didn't think I needed to explain with us running late, trecking a toddler around and all our hand luggage.
Hehe....the dramas didn't end there at all. Isaac only slept for 4 hours of the flight (this part of the flight was 18 hours or so). Alan and I got hardly any sleep at all and then we found ourselves in LA connecting to Minneapolis. I had forgotten how big American airports are! Boy, without a stroller and with all our hand luggage and having no sleep, it was heaps hard trecking around the airport.
Hehe, I shared with some people that when we arrived in LA I felt so sick and faint from no sleep that I practically staggered out of the huge plane and said to Alan, "oh no I need to put my head down" and squatted right there with my head between my knees....hehe...all I could see was some sort of chair coming towards me and so I walked as well as I could, only keeping that chair in focus and then felt myself sit down only to hear....."Um...Miss, this wheelchair has been booked for another person but if you want me to get you another one I can".
HAHAHAHA....I couldn't believe that I had just sat down in someone else's wheelchair!!! I asked her to give me a moment and then walked on recovering a bit more but I was heaps embarrassed by what I had done. Hehe.
Anyway, we then flew from LA to Minneapolis and .....guess what...we were then supposed to go to Portland, Maine but we missed our flight!!!! AHHHHHHH....I was pretty angry by then. I was tired, feeling sick and struggling to cope. Surprisingly Isaac was being so well behaved. It felt like no one would help us out. I am sure Alan was choosing to wander around the airport, wondering what to do, when we could have just asked someone. But when we asked it felt like we had no help anyway. Then they told us they had no hotels available for us. Yep, I was very tired by then. Alan and I finally found a hotel and slept the night...although Isaac was awake from 2am to 5am in the morning that night because of the time difference between America and Australia. Still...we were able to get on the flight at 8am the next morning to Portland Maine. Whew!!!! What a relief!
I found myself sitting next to Jackie and Evan on that flight. Evan I found out has FA and he was only about 12 months old (am I correct in saying that Jackie?). This was the first time I had ever met another FA human being other than my brother and I was thrilled. So thank you Evan and Jackie for being the first people with FA to introduce yourselves.
I actually found the first night at camp very overwhelming. When I arrived there I stayed in my room while Isaac was sleeping. Alan went walking about the camp site. When he came back he said that he had already met some of my friends from online.
I went out that day and met Krisstina, Jo and Jacy, Nicholas Boggs, Donna Boggs, Kristen and Wesley, Teresa, Tyler and Emma....and so many more people that I felt so overwhelmed but couldn't register that I was not in Australia anymore.
I found Camp Sunshine a challenging place. The medical information about FA was not new to me but it did affect me and I found it hard to listen to. Sometimes it made me feel helpless and hopeless, but then I would have to remind myself that Jesus is bigger than FA and that with God anything is possible. Healing is possible. I had nights and some days where I would cry in my room because I was so overwhelmed by it all. You have to remember that this was my first time seeing other children with FA and hearing intense lectures about FA. It was hard. The children were such a dream to meet and so lovely.
I love you Nicholas Boggs. I love the way you love life. You are a credit to the Lord Jesus Christ- and you too Donna.
Wesley, you are too cute (and your mum of course).
The Clifton family are amazing. Emma is gorgeous and Isaac played with her so well. They fought and complained about each other.....but in a charming way. They also held hands and hugged each other.
Teresa, thank you for your support at camp...even though we had only just met face to face you really did welcome me and make me feel wanted and comfortable.
That is another thing I was blessed by.....how you all welcomed me to camp, into the FA community. I have felt so alone here in Australia with FA....I was so blessed to have a family to talk with, to love.....thanks to ALL of you. I was so blessed that so many of you accepted me. I am so glad that I could bring hope into your lives in regards to FA...and I am glad you all loved my miracle boy, Isaac. You all have played such a big part in my heart over the last month....there are too many of you to mention....but thank you.
The photos that you see are some of camp and Oregon. I have pictures of Krisstina and Jo and Jacy...it was so nice to meet you girls!
Oh and at the talent night I felt the need to share a song with you all...I was really scared...hehe..you may have seen me shaking....it was about how Jesus' love is neverending and that no matter what happens in life, Jesus will always be with us.....I did miss hearing about the importance of God at camp and how significant He is in our walk in life. I was really taken back with the response I got from the song. People were touched by it and that really touched me. So thanks for making camp a good experience despite the hard parts of it.
In my next update I will share about our holiday with the Cliftons in Oregon, but this journal entry is way too long now so I will wait.....and there was more drama with the planes as well.....oh and once we got to camp...the airport had lost Isaac's luggage.....thanks heaps to Michelle, Denise and Alicia for letting Isaac borrow Alicia's shoes while he had no luggage.....Hmm...I still need to send those shoes back.
On the medical side of things for me....I had an IVIG infusion 2 days ago and it went well. I had an anxiety attack when I saw the doctor who was not well mannered to me before I left for camp but he didn't admit me....so that was good. I catch up with Dr. Ben in about 2 weeks.
Ok...got to go...
Love Charisse
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Saturday, September 3, 2005 9:01 AM CDT
Hi Everyone,
We're still alive! Back in Australia, safe and well. We've been really busy over the last week and Charisse has not had a chance to update anything. I'm sure she'll get to it any day though, so keep watching.
There's new photos in the gallery, so check them out!
Love you all,
Alan, Charisse & Isaac.
xx
It is Wednesday night and I am feeling improved compared with the other day. Tuesday my mum came and looked after Isaac and I had a sleep in and then today I was back on my own again but in a better state of mind. I still feel tired but I am getting there. I just have to make sure I get to bed early.
So today we had kindergym and Isaac loved it. He ran everywhere and climbed on all the equipment.
Then I went to a friend's house and she has a 2 1/2 year old and Isaac and him played together. They wrestled!!! It was Soooooooooo cute! They were laughing and pulling each other down and stuff....Isaac really needed the interaction! Then I came home and Isaac had a sleep while I did things around the house, emailed and read my Bible.
It was a good day. So now I need to get off to bed! I need to make sure I am relaxed.....please still keep my emotional health and physical health in your prayers.
Lots of love,
Charisse
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Sunday, September 25, 2005 11:54 PM CDT
Well, it is Monday and I don't feel like it has been the best day. It is Monday here in Australia at 2.30pm. I just was never able to recover from the sleepless night on Friday night and so Sunday, I was so nauseated...I had to miss church...Alan and Isaac still went...and today I woke up and felt so unwell and tired that I had to ring mum and dad up and get them to take Isaac for the day.
I lay on my bed all morning and couldn't stop the tears. I felt so bad that I had to send Isaac off with my parents. He has been just wanting me all the time but he seemed happy to go with them.
I am still in my PJ's......I just need to feel good again.
Thanks to my friends who have chatted with me over the phone or any other way.....who have helped me feel better. Thanks to Alan, my husband, for being patient with me when I am crying on the phone...my anxiety sometimes rears its ugly head and then it just flows out!
So I am going to have a bath and feel better....but I still feel so unwell and so guilty about feeling this way. I hope Isaac would not be cross at me about it. I love him very much....and I wish I could stop crying. Boy, I hope my week gets better.
Bless you and love you,
Charisse
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Friday, September 23, 2005 9:46 PM CDT
Good Afternoon,
well just a short update to let you know how life is going.
My mouth ulcer that Dr. Ben looked at...he gave it 2 weeks to heal and then we were going to biopsy it.....well it is healed and gone!! Praise the Lord!
Another thing to rejoice over...well for us anyway. Isaac has begun toilet training the last 2 weeks and last night was the first time he ever has done a poo in the potty! I wasn't there...but Alan was. He sat on the potty....and did a poo! When he got off the potty he was scared of the poo and started screaming and yelling, looking at the potty freaked out and all. He was rewarded with praise and his favourite muslie bar! I will use stickers more now...thanks to the person who mentioned that idea....was it Sandra? Anyway, he is a bit scared of the potty now but that is ok because he will get better again. Doing a poo in the potty can be kind of scary for a child.
Yesterday I worked an 8 1/2 hour shift at the hospital. I was in day surgery and I really enjoyed my shift. I usually do most of my shifts in Theater Recovery. It was so busy and I was on my feet all day. I worked from 11am to 7.30pm.. Usually around 6pm my body says, "I am tired and switching off". Well, I suddenly felt tired at that time but I managed to push myself. I don't do night shifts because my stamina can't manage it. But I was very happy with my shift....some interesting things happened but they are confidential.
I had a bad sleep last night though. I got home from work and we did devotions with Isaac and he went to bed. I went to bed around 10pm and turned the light off at 10.30pm. I had high anxiety for some reason and my mind started to have very clear visions of the women's and children's hospital where I go to see Dr. Ben (also where Shannon died). I started to get heart palpitations and breathing difficulties and my mind rehearsed me having a full on anxiety attack and so I tried to stop my mind and focus on other things. At 1am I woke Alan and he tried to relax me by rubbing my legs.....I then continued to try and sleep but by 3pm I woke Alan again and then all my anxiety came out. we were up until 5am with all my anxiety. I am very tired today. Please continue to pray that the things causing me grief will get worked out.
Ok well I need to go. I have a 1 year old birthday party to go to with Alan and Isaac.
Bless you all and bye,
Charisse
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Sunday, September 18, 2005 11:44 PM CDT
What a day! It is just an ordinary Monday but I haven't enjoyed my day much at all. Isaac is toilet training. He is a good boy. We have only been trying it for a week. So he is only into the stage of learning to sit on the potty without being frightened. I am sure that I have annoyed him today and he has annoyed me. I love my dear darling of course. He has done well to be less afraid today. I try and make it fun! Hehe!
Hehe...I feel grumpy today...well I have felt grumpy the last week...not because of Isaac but because of certain truths that a woman must endure....and I am sure Isaac looks at me and thinks, "what's up with you mum?" and then tries and makes things a bit more difficult for me in everyway.
He is getting restless with the rainy days and wants to get outside and play. It is just not possible today...so we played lego. He is in bed now and I think I will rest too after this.
Yesterday at church was wonderful. We had a visiting Pastor speak at the church. His name is Peter Franz. He ministers in Uganda and other regions of Africa. My church is 90 frican here in Australia and so they enjoyed having him here to speak. He has been blessed with a healing annointing from the Lord and so when he asked for people with "blood disorders" to come up for healing I marched right on up. I sure do believe in the power of the Holy Spirit to heal the sick and I wasn't going to miss out. I felt such a humbling before Jesus and kept thanking Him and thanking Him. I had an amazing time with God. I truly can feel His presence greater these days and I would never want to be without Jesus...and I am trusting Him for the healing of FA throughout my body. I know Jesus can heal. I have seen Jesus heal people with AIDS in front of me and I have witnessed them show their before and after medical tests....God is truly amazing and I trust Him with my life.
So please know that there are specific people I am praying for and have on my heart....I will remember you in prayer. With God nothing is impossible.
All right, well, I am now going to go. I pray that you will all have a great week.
Love Charisse
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Wednesday, September 14, 2005 4:36 AM CDT
Good Evening,
Well, I actually did quite well in my appointment with Dr. Ben. I have had a nasty ulcer in my mouth for 2 weeks. It started when I changed toothbrushes and my gums were irritated and it got so big I was a bit concerned about it. So I let Dr. Ben have a look and he thinks it looks like an ordinary ulcer and explained what potential canerous ones usually look like. He gave it 2 weeks to heal and if it isn't healed then we will do a biopsy to check for what infection it could be and of course, that always rules out cancer as well. But since Monday, my ulcer is smaller and not as sore and is healing up. So I am pleased about that and I am being real careful as I brush my teeth so I don't re-open to ulcer and let it heal.
I was able to finally talk to Dr. Ben concerning some other issues as well to do with the gynae. I had never told anyone and after hearing the gnae lecture at camp sunshine I suddenly thought about my issue and realised that after years of enduring such a thing it could have probably been fixed....Dr. Ben was very accomadating and will speak to my gynae doctor about it and may be we can help my issue.
I was disappointed that my platelets are jumping around a bit. I always feel uneasy about all that......but platelets do tend to jump around a lot, especially if you are doing 6 weekly blood tests with the IVIG infusion I have. When I used to have bloods every 4 to 6 months, you wouldn't see the jumps that the platelet count does and you never would have known. Every thing else is about the same. I was pleased with my cholestrol....I have had a cheese craving lately and have been crazy with cheeses...hehe...glad my cholesterol is till well within normal levels.
I still found going to the Women's and Children's very hard but Isaac was with me and amused me heaps....even though I had a lot of anxiety I did well. Dr. Ben asked me if I would be able to try coming to the clinic in Ronald McDonald House instead of the ward...I said I didn't know...I felt a bit panicked about it actually...so I will let him know...another thing to overcome.
There are still issues I am dealing with in relation to FA. Please keep praying for me. I think we will always be dealing with issues but this one is a big one.....and as I have said before, feels big and overwhelming for me, but nothing is ever impossible with Jesus or too big for Him.....so I will continue to trust in Jesus. I am desperately asking the Lord on certain subjects at the moment and I know He hears me. God's grace never fails.
Donna and Nicholas...I am thinking about you guys as you try the oxymethalone. I pray that this drug is a wonder drug for you as it was for me.
Ok, well life goes on. Isaac is busy trying to get my attention so I am going to go.
Bless you all and good night.
Love Charisse
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Sunday, September 11, 2005 8:53 PM CDT
Hi Everyone,
today is Monday for me. I have an appointment with Dr. Ben today. I actually thought on the weekend, "wow I feel ok about my appointment" and then something happened and I have been in tears about FA stuff and my appointment today. Once again I have felt extreme anxiety prior to my appointment and it is hard to hold the tears in.
My brother is very close to my heart at the moment. We just celebrated his birthday recently and he would have been 25 years old had he still been alive. I went to his gravesite and broke down in tears. I feel it so strongly...the hurt and love I have for him and the grief that I then realised, once again, that I am dealing with.
So it is off to the Women's and Children's hospital again today for my appointment and I feel broken as I go facing the hospital where so many things took place. How much longer will I feel this way?
There are so many issues to address with my appointment today. We will address certain issues from the FA Camp.
I just don't like going to the doctor who facing certain things, talking about stuff.
Anway, Jesus is with me all the time and so I will walk with confidence. I know that Jesus is doing a healing work in my marrow and whole body with FA all the time. I will continue to trust in Him even though I sometimes feel sad.
I pray that you are all having a good day or night.
Bless you and talk soon,
Love Charisse
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Thursday, September 8, 2005 5:46 AM CDT
Well, I have shared about camp but not about our time in Oregon with the Cliftons.
It was a relief to not have to fly to Australia the week after camp. I don't think I would have handled such a long flight...so we just went 8 hours across the country to Portland, Oregon. We stayed in a hotel in Aloha. We holidayed with Teresa, Tyler and Emma Clifton. It was good. The first day we just slept in and then went to their house and left on a short drive to see the scenery. The greenery was beautiful. It was so green. In Australia it is not so green, especially in the summer time. So I was fascinated by the trees and how lush it was.
The second day Alan and Tyler went shooting at a gun ranch and I stayed with Teresa at her appartment. We had Emma and Isaac with us and we just took it easy. After a huge week at camp it was nice to go slow. We went to the park and the kids played. They played so nicely together. They had to copy each other. At the park they sat on a swing together and laughed as they were pushed. Isaac loved the company!
Later that day Teresa, Tyler and Emma took us to see Emma's hospital and the huge air bridge that it has. I can't remember whether I have put photos of that on the website but the hospital has a beautiful view on the mountain and I was fascinated by how children friendly the hospital was...hehe..now it is a children's hospital so you ask me why was I surpirsed? Our major children's hospital in Adelaide is more medical looking and I think the set up at this American hospital was great....I am also a nurse and love other country's hospitals.
We also went on a day's long outing to see Mt St Helens in Washington State....that was excellent and you can see the mountain in the pictures I have postered here. It is an active volcano and it had steam coming out of the top. I could smell the supha and feel the heat from it. we drove to the furtherist lookout. We were so close to it. I then saw a show on this volcano back in Australia and was pretty pleased to announce that I had been there in person. Hehe.
We went to Oregon zoo...what a cool zoo....and even cooler than ours here in Adelaide. I liked the marine creatures and bears because you got to see them in an aquarium type setting as well as from the top on the outside. That fasinated me....that is where we got the pictures of the seal lions...if I have posted them that is.
And...we saw the fabulous waterfalls....they were great and so huge. I bought some things from there for my famliy. I think there are some photos of them on this site. That was lovely...and then we visited with Rachel Altmann and Nina who has FA (she is 2 I think....HI Rachel, Nina, Benjamin and Tyler). We had a great time there. I loved their house...wow!! We haven't got houses like that where we live! It was so nice spending more time with you Rachel. You are a lovely person.
Oh, Rachel, Benjamin and Nina also came with us to the zoo that time.
Every night we were taken to a different restaurant to get a taste of the variety of food in America. We went to Chinese, Mexican, Italian, had pizza...even the pizza taste different! Teresa cooked for us a couple of nights and she is a great cook!
A good time was had by all and it was a shame when we had to leave. We only could stay a week and then we were flying home again (only to accidently leave our hand luggage with sercurity and realise last minute and almost missed our flight..hehe).
Anyway, once again i have chatted too much. So I am going to go and relax.
Bless you all,
Love Charisse
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Sunday, September 4, 2005 6:07 AM CDT
Hi Everyone,
sorry about the lack of updates since I have been back from America. I have only been back one week and I have been so busy catching up on everything.
I just put Isaac to bed so I think I have time to chat now for a while.
First of all, our 2 weeks in America, the first in Cascoe Maine and then Portland, Oregon....were both good weeks.
As per usual, excitement tends to follow Alan and I around so the excitement and adventures of what lay ahead started as soon as we left Adelaide airport.
Isaac still enjoys bottles with milk in it...not to carry around but only to enjoy with his breakfast,lunch and tea. If you forget these bottles, he will often get upset so they were very important to Alan and I. Already our dramas began when we arrived from Adelaide to Sydney in Australia on the way to America. We got off the plane to board onto the international flight to LA and realised that we had left Isaac's bottle bag with his bottles in the previous plane. Poor Alan ran so fast to go and get the bag...of which we did get hold of. Our Adelaide flight was running late and so we were late getting on the plane for LA. As we were fumbling onto the plane I asked for some help and the air hostess said, "what's wrong with you?". I was shocked! I had never had an air hostess ask me such a ridiculous question before and I didn't think I needed to explain with us running late, trecking a toddler around and all our hand luggage.
Hehe....the dramas didn't end there at all. Isaac only slept for 4 hours of the flight (this part of the flight was 18 hours or so). Alan and I got hardly any sleep at all and then we found ourselves in LA connecting to Minneapolis. I had forgotten how big American airports are! Boy, without a stroller and with all our hand luggage and having no sleep, it was heaps hard trecking around the airport.
Hehe, I shared with some people that when we arrived in LA I felt so sick and faint from no sleep that I practically staggered out of the huge plane and said to Alan, "oh no I need to put my head down" and squatted right there with my head between my knees....hehe...all I could see was some sort of chair coming towards me and so I walked as well as I could, only keeping that chair in focus and then felt myself sit down only to hear....."Um...Miss, this wheelchair has been booked for another person but if you want me to get you another one I can".
HAHAHAHA....I couldn't believe that I had just sat down in someone else's wheelchair!!! I asked her to give me a moment and then walked on recovering a bit more but I was heaps embarrassed by what I had done. Hehe.
Anyway, we then flew from LA to Minneapolis and .....guess what...we were then supposed to go to Portland, Maine but we missed our flight!!!! AHHHHHHH....I was pretty angry by then. I was tired, feeling sick and struggling to cope. Surprisingly Isaac was being so well behaved. It felt like no one would help us out. I am sure Alan was choosing to wander around the airport, wondering what to do, when we could have just asked someone. But when we asked it felt like we had no help anyway. Then they told us they had no hotels available for us. Yep, I was very tired by then. Alan and I finally found a hotel and slept the night...although Isaac was awake from 2am to 5am in the morning that night because of the time difference between America and Australia. Still...we were able to get on the flight at 8am the next morning to Portland Maine. Whew!!!! What a relief!
I found myself sitting next to Jackie and Evan on that flight. Evan I found out has FA and he was only about 12 months old (am I correct in saying that Jackie?). This was the first time I had ever met another FA human being other than my brother and I was thrilled. So thank you Evan and Jackie for being the first people with FA to introduce yourselves.
I actually found the first night at camp very overwhelming. When I arrived there I stayed in my room while Isaac was sleeping. Alan went walking about the camp site. When he came back he said that he had already met some of my friends from online.
I went out that day and met Krisstina, Jo and Jacy, Nicholas Boggs, Donna Boggs, Kristen and Wesley, Teresa, Tyler and Emma....and so many more people that I felt so overwhelmed but couldn't register that I was not in Australia anymore.
I found Camp Sunshine a challenging place. The medical information about FA was not new to me but it did affect me and I found it hard to listen to. Sometimes it made me feel helpless and hopeless, but then I would have to remind myself that Jesus is bigger than FA and that with God anything is possible. Healing is possible. I had nights and some days where I would cry in my room because I was so overwhelmed by it all. You have to remember that this was my first time seeing other children with FA and hearing intense lectures about FA. It was hard. The children were such a dream to meet and so lovely.
I love you Nicholas Boggs. I love the way you love life. You are a credit to the Lord Jesus Christ- and you too Donna.
Wesley, you are too cute (and your mum of course).
The Clifton family are amazing. Emma is gorgeous and Isaac played with her so well. They fought and complained about each other.....but in a charming way. They also held hands and hugged each other.
Teresa, thank you for your support at camp...even though we had only just met face to face you really did welcome me and make me feel wanted and comfortable.
That is another thing I was blessed by.....how you all welcomed me to camp, into the FA community. I have felt so alone here in Australia with FA....I was so blessed to have a family to talk with, to love.....thanks to ALL of you. I was so blessed that so many of you accepted me. I am so glad that I could bring hope into your lives in regards to FA...and I am glad you all loved my miracle boy, Isaac. You all have played such a big part in my heart over the last month....there are too many of you to mention....but thank you.
The photos that you see are some of camp and Oregon. I have pictures of Krisstina and Jo and Jacy...it was so nice to meet you girls!
Oh and at the talent night I felt the need to share a song with you all...I was really scared...hehe..you may have seen me shaking....it was about how Jesus' love is neverending and that no matter what happens in life, Jesus will always be with us.....I did miss hearing about the importance of God at camp and how significant He is in our walk in life. I was really taken back with the response I got from the song. People were touched by it and that really touched me. So thanks for making camp a good experience despite the hard parts of it.
In my next update I will share about our holiday with the Cliftons in Oregon, but this journal entry is way too long now so I will wait.....and there was more drama with the planes as well.....oh and once we got to camp...the airport had lost Isaac's luggage.....thanks heaps to Michelle, Denise and Alicia for letting Isaac borrow Alicia's shoes while he had no luggage.....Hmm...I still need to send those shoes back.
On the medical side of things for me....I had an IVIG infusion 2 days ago and it went well. I had an anxiety attack when I saw the doctor who was not well mannered to me before I left for camp but he didn't admit me....so that was good. I catch up with Dr. Ben in about 2 weeks.
Ok...got to go...
Love Charisse
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Saturday, September 3, 2005 9:01 AM CDT
Hi Everyone,
We're still alive! Back in Australia, safe and well. We've been really busy over the last week and Charisse has not had a chance to update anything. I'm sure she'll get to it any day though, so keep watching.
There's new photos in the gallery, so check them out!
Love you all,
Alan, Charisse & Isaac.
xx
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