Sunday, June 25, 2006 7:13 AM CDT
Friday 30th June 2006
***UPDATE***
Hello All,
I left last week's update on so if you missed what was happening you could catch up!
It has been a tough week this week. I have felt like I may have gotten a little better but still quite distressed with this very sore throat and swallowing problem. Also, I have been so lethargic. Today is the first time I think I have noticed a drastic improvement with my throat problem. It is less sore and easier to swallow...this is a good thing...however, on Monday I have an endoscopy scheduled just to look down my oesophagus for any nasties...this will help with my anxiety as well. it has gone through the roof! I am still on antifungal.
I had my infusion today. My levels last week of the IgG in the blood were really low and I am relieved I had my IVIG infusion today. I am praying I will not have a bad reaction. I tried to stretch the infusion back to 6 weekly, but with all this sickness and really low IgG levels....we are back at 4 weekly infusions. I should improve in the sickness level. Hoping my platelet count was only really, really low because I was really sick.
Isaac has been vulnerable all week..does not help when he sees me so distressed.
Also I have been really grieving over my cat...it has brought so much emotion about death out of my head...I have struggled with constant weeping during the day..the type where you try and stop it but it comes...
The autopsy of Jemima, our cat.....I can't believe what actually caused her to be so sick was this...it really made me angry and upset. She had a puncture wound in her intestine which had been there for 2 weeks from a foreign body...it had started festering and just became an out of control infection...no wonder no x-rays or ultrasounds could pick anything up...no wonder...we would have liked to have a go at fixing her...but we didn't know what was going on and she was getting really sick and we had already spent so much...I have actually felt regret about her dying...all I can do now is just let myself grieve...we will get another dear little kitten...we still have Matilda, our 3 year old cat....
So that is that......thanks for checking up on me!
Love Charisse
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Good Evening all,
it is Sunday night here. It has been a rough week. Firstly, my deepest sympathies and love to Brenda and her family. Robbie has now let go and is free of FA. Please support them and pray for them as they go through this hard journey. We love you guys.
As for an update on my family.....I want to talk about my cat...I know that my cat is nothing compared to that of which families are going through in losing their loved ones.,...so please know...for the sake of these families...I don't want to make any of this sound worse than losing someone you love......I am now going to update what happened this week in our familiy.
Our much loved cat, Jemima, died on Wednesday night after 5 days of being in hospital. Her wbc showed that she was seriously sick and we needed to open her up to see what it was...but were not guarenteed that she would live after all that....we had to let her go....we will find out what happened though..waiting for results...she was only 5 years old...Jemima has helped me throughout tough times with FA....sometimes an animal becomes your closest friend when you have down times...she cuddled me, let me cry on her and I loved her....I am very sad that she is gone. We told Isaac...the first night it didn't seem to register...but the next day he asked me and I told him the simple truth....he went real quite and leaned his head against his seat.....the only question he asked was "what about mummy being sick?"...my heart broke...I was hoping he was only referring to my cold...not the long term stuff and so tried to explain appropriately...poor sweet heart....I had to...... encourage him that we would go and buy a new baby cat for him.....that brightened his mood...but I have noticed some separation issues and I think he is grieving a bit over the cat. Poor love...Jemima was his favourite cat!
ok, besides that....I have been really unwell...let me give you the run down. I had ulcers in my mouth real bad. Well just over a week ago...I started getting a really sore throat and thought, "on no"...this has happened once before...in December...I got so sick with 40 degree C temperatures and in bed...not being able to swallow...I was so sick.,..well due to the ulcers and stuff I was on antibiotics...and then this happens...well my neck swelled up....I feel like my oesophagus is blocked off...I cough and throw things up...I can't swallow or eat properly...it has been unbelievably painful...rolling and crying on the floor.....rushed to the haematology clinic....platelets seriously down and scary......and my haematologist is off sick...other doctors unsure and being difficult...finally my son's paed helps out...my GP suspects fungal infection....but still really sick....finally my haem is back on board and they think it is a superficial fungal, candida...on antifungal and antibiotics.....if it is not better by Tuesday.,...on an antifungal that treats systemic infections...my neutriphils are 1300...praise God over 1000...but still low enough to make a fungal infection a little difficult...now if this big antifungal drug doesn't get rid of things...an endoscopy to see what is happening....and you know what I hate about FA...is that you always have to rule out a tumor.....FA patients always have some kind of cancer to check for...so treatment and diagnosis becomes scarier! I hate that....we just need to be safe....but because I have had this before and no difficulties inbetween...I am not jumping to any conclusions....but I still need to be careful.....I actually feel really unwell...faint and dizzy and my ears are piercing pain and have fluid on them and blocked...I still have a cold and a cough.....I have actually been unwell....so this is not unexpected and I have been on 4 lots of antibiotics...with a lower neutriphil count...fungal infections are to be expected...so I refuse to dwell on the worst...cancer...but it does worry me as it would anyone else. I just want to feel better and get rid of this pain....now my haematologist tells me that this type of candida that I have actually causes heaps of pain and they usually manage it with morphine...but I don't wish for that...another thing was to sedate me enough to make me less tense and lie in bed and rest for a week...but I don't want that either...hmm..what will my doctor think about all that this week.
So that has been my week....quite full on!
I have my infusion in a week...I extended my infusion by 2 weeks for the last 2 times...I hope that didn't make a difference with the infections I have had...I need to see my levels.....
Then in Two weeks we will be spending the weekend with an FA family in Syndey...the Rodwells...we are excited about that...we are also attending a Christian conference...Alan and I have not given up on the promises that we know and believe God has given us and the miracles He has promised us.
My sister looked beautiful today at 20 weeks pregnant!
Well, that is all for now....please keep Brenda (Robbie's mum)...in prayer. Please keep praying for Nicholas' miracle...keep Will in prayer with his trial....Ben Hilton doesn't have a tumor....YES! Ben Hilton is in Sydney, Australia...they had a terrible scare when he started having seizures...for a while there they thought he had a brain tumor...praise God it is not that...but demyelination of the neurons instead..I won't explain that....pleae pray for Nina Altmann who does have a bad brain tumor.......
I need to go...please pray for me.......
Love Charisse
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Sunday, June 18, 2006 6:29 AM CDT
Hello Everyone,
once again I thank you for your prayers....believe it or not I am sick again. I think I have re-caught something because I cannot swallow very well...it feels like I have a huge graze and apple in my throat and I have begun coughing more and feeling tired. I need it to go away...I have had enough. Although I should not complain as I know there are many FA families that are having a harder time than me at the moment. Alan and I are praying for those FAmilies. Please keep Robbie and Brenda uplifted in prayer. The last I heard, Robbie had taken a turn for the worst and I don't know where things are up to since the weekend...that family really need our support, love and prayer at the moment.
It is a relief to know that it is not just my immunity that is causing me to be suseptible to sickness right now. This is one of the coldest winters we have had in Australia for a while and almost everyone I know is sick. My mum and dad, my sister is actually quite unwell, Alan is also sick with this sore throat and cough....lots of people at church are away...everyone seems to be sick...not just mildly sick...but sick, sick. The GP did say there is a strain going around that is really putting people in bed even though they may not have an immune deficiency...so I am not the only one...It is amazing...I don't think I have seen so many people sick at the same time at winter.
Along with that, it seems that our cat, Jemima, has joined in on this sickness as well. She is actually seriously sick and yesterday had to be hospitalised. I know she is "just an animal" as some would say...but she is a very special part of our family and Isaac adores her! So of course it has made us all emotional dealing with her being sick. The worst part is that we don't actually know what is wrong with her yet....she was not responding to antibiotics at home and seemed to be declining....got severely dehydrated and ended up in hospital having IV therapy and x-rays and stuff....she may have something terminal now...they are not sure....but if she does...we may need to say "goodbye" to our family cat...as I said she isn't a person...but this is upsetting for us since we deal with so much emotion with FA and circumstances,,,this really hits your vulnerable emotions. I pray that she is going to pull through and have nothing too serious. I don't know! We first need to diagnose what she has before we can make a decision about anything! So she is still in hospital. We took Isaac to visit her today and he was really happy to see her (Isaac is 3 1/2 years old).
Well, please keep praying for FA families...keep praying for Nina, Robbie and his family, Nicholas who had some sniffles, Will in his trial, Ben Hilton in Australia (still trying to work out this probable tumor...and now querie infection in the brain) and Ryan who is going for a second transplant....there are plenty more..please keep praying for them.
Please keep praying for me...my mouth is still not healed completely from these ulcers....I have many appointments this week. I struggle with seeing FA families go through much and because I have FA myself I tend to feel very overwhelmed and extremely grieved..not only that...sometimes you worry about all of this happening to yourself and how do you cope with that......
But I want to put in some praise points! Little John is doing really well after his transplant and his platelets are in the 400,000's! Praise the Lord...keep praising Him for that!
My sister, Liesl, is 19 weeks pregnant today! Yay! I am going to be an Aunty! Isaac will have a cousin! They had their detailed ultrasound just this week which went well! I am excited...and I know Liesl is excited....aren't you sweetness? I have not shared on here yet that Liesl is going to have a baby! This is uplifting and good news in our family...we are all very excited....
Isaac did a pooh in the potty on Friday! Yay! And we danced and sang a little about it...he got two stamps and had a piece of cake.....it was a joyous time!
I am hoping to do a 8 1/2 hour shift on Friday in Day Surgery! In fact...I am doing it...I am believing that Jesus will make me well enough to do it. I have not worked much at all lately and I don't want to miss out on this permanent shift! So please pray I can go to work!
Isaac went to kindy/day care for the first time Friday morning and had a blast...my little man is growing up...I was a nervous wreck that day! Isn't it funny how you feel so protective over your little babies!
Well, I need to go. Bless you all and I will talk with you all soon.
Love Charisse
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Monday, June 12, 2006 6:09 AM CDT
Hello All,
well I didn't really enjoy my weekend. I have been sick all weekend and didnd't get to church and have not done much actually...but feel miserable...well try and laugh and have a good time...but you still feel miserable.
Isaac is feeling good again. He and Alan had a good daddy/son bonding time this weekend. Because I was really too unwell to do much, Alan and Isaac went out shopping and went on a train for a ride and went to church together and stuff...I stayed at home.
Last night was a shocka of a night. I was feeling very distressed last night. I have been feeling very overwhelmed by somethings the last couple of weeks and sometimes this hits me and I feel panicked and feel very distressed...you start crying and feeling weird...panic attack..they are horrible and I don't need them when I feel so awful already. My whole mouth is affected by mouth sores and ulcers and swelling ...I can hardly brush my teeth. I have been using cotton buds to help do my teeth and my special mouth wash of course...so because of pain and a bit of distress...well I was really distressed...I didn't end up falling asleep until around 4am this morning and so I feel very tired tonight and pray that I sleep...I need my mouth to heal and I need to be able to look after my energetic child!
Alan has comes down with something today and is feeling pretty rotten as well! My whole family has been sick!
Thanks to those who have been praying for me...it is much needed.
Please continue to pray for the FA families who all seem to be getting hit with one challenge or another! Sometimes it really feels crazy!
Please keep Robbie and Brenda in your prayers. I have not heard where things are at since last week...but they need your prayers.
Other people who need prayer...Ben Hilton, Nicholas Boggs, Nina Altmann and many more.
Bless you all and I hope you have a good week!
Love Charisse
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Thursday, June 8, 2006 8:22 AM CDT
Quick update,
did I say that Isaac had croup last week...he is now recovering but has a bad cold the poor love.
As for me...those abcsesses that I had have almost gone...Praise the Lord....but I have a bad, bad cold. I feel wiped out...I also have what looks like an ear infection and the respiratory infection that is going around and more normal ulcers have popped up in my mouth...hence I am on more antibiotics.....the state of my immunity cannot hold this up on its own with the amount of stress that my mind and body have been under. Please pray that I don't have my throat swell up and close off like last time and had 40 degree C temperatures.....I couldn't swallow anything to help my temp.....I hope that this doesn't get to that.
My haematologist has been away so my GP who is an ex-paed has been treating me...he is excellent...but it is good that I get in to see one of my faithful paed doctors tomorrow...who is actually Isaac's paed...just that he helps me out as well.
So much is going on....as I said another time....we have started a charity/organisation called FA Australia and one of our members is in a serious situation. I have permission to share from the family. Ben Hilton is a young man of age 22 (corrected) who lives in Australia and he has FA and they got a sudden, out of the blue shock to find a tumor in his brain...everything needs to be double confirmed but it may not be operable...but we will need to wait to hear what they have to say. Please, please, keep these people in your prayer...they went into hospital for something else and this was discovered....a huge shock...they are such a sweet and dear family.
Please continue to pray for Nina and her family...she had brain surgery this past week or two.
Pray for Nicholas...he has been having allergies to antibiotics and he needs these drugs to help him be well a lot of the time...we would hate for him to develop an allergy to most antibiotics.
Pray for Ryan who is looking at a second transplant....
Pray for Little John....and thank God that he is doing well.
Pray for Robbie who is on a ventilator and in critical condition....please lift them up in prayer.
There are many more children and adults who need prayer. Let us ban together and pray for them.
Bless you all,
Love Charisse
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Monday, June 5, 2006 8:53 AM CDT
Good Evening,
thanks to those who have been signing the guestbook and praying for me. My ulcers are still here....I went to the doctor and he described them to be more like abcesses...so I have been on oral penicillin antibiotics and it seems to, may be, be improving...but I still feel very miserable. I also woke with a yucky cold today. I am sure that all this has been set off by that stress a couple of weeks ago.
I would like to thank God for Nicholas...he is over the Pneumonia...or at least on the mend. Please keep him in your prayers.
Praise God for Little John and how well he is doing since his transplant.
Also I have a few prayer requests tonight....dear Robbie...he is in critical condition and really needs our prayers...Please pray for God's divine intervention and pray for Brenda as well...his mum.
Please pray for dear little Nina and Rachel, Tyler and Benjamin as they have had tough news about the tumor in Nina's brain. Please pray for the family! Bless that family Lord!
Ryan in NZ...his results had shown no change and last I heard they were most likely looking at a second transplant. These people are dear to my heart....please pray for them....
Well I am off to bed! I love you all and keep praying!
Love Charisse
