Our New Kitten Bella

Ok, hi everyone,
it has been a little while since I wrote. I just couldn't be bothered! Sorry. I have been really busy! I have been lap swimming and helping my sister from time to time, being a mother to Isaac and enjoying our new kitten, Bella!

We got her two weeks ago and she was 7 weeks old. So she is 9 weeks old now. She has grown quite a lot in 2 weeks but is still SO small! You forget how small kittens are. Trying to keep watch over Isaac while he plays with his new kitten. He gets SO excited and she is SO little, I worry he will break her at times! So I have been busy trying to teach Isaac to be a good little owner. Bella is so sweet and very affectionate. She purrs like a tractor and she loves a good cuddle. This is good for Isaac. She was born into a family with little children so she is used to children but we still need to watch Isaac while he plays. The picture under here is of Isaac's areoplane that he made and Bella was his passenger in the back. Cute. Isaac had a walkie talkie thing on his head and was the pilot. This is rather an odd picture of myself. Must be the angle of the camera as I look out of proportion but Bella is asleep in my arms like a baby. I love baby things. When my sister in law saw Bella on Friday she said that the pictures make her look big compared to how little she is in real life. Bella is very little :-)

Bella on her first day at home....

Isaac's very first proper cuddle at home. His face says it all! He was very pleased :-)

I like this photo. Isaac's legs looks huge!

Bella playing :-)

She stayed in the bathroom for the first 2 or 3 nights and then was transferred into the laundry to sleep with Matilda, our 6 year old cat. They are still getting to know each other but Matilda is quite tolerant of Bella. Bella is now brave enough to sneak up on Matilda.

What else has happened? I had infusion on Friday. I was disappointed by my bloods and a little nervous at what my bone marrow biopsy might show this year. *sigh* I wish that counts NEVER went down! It's my platelets that seem to worry me the most. I keep plodding along though.

I have been dealing with lots of things. I have reached the stage where I want to work through the last moments of my brother's death and this means visiting a transplant unit with a social worker, being taken through and having this person talk me through feelings, smells, visions and anything else that seems to happen when I am near one. I haven't been through or close to a transplant unit since Shannon died 15 years ago. I know that God has brought me to a place where it is time to walk through the door to some more emotional healing so I am not bound by fear all the time. If I ever was supposed to have my own transplant, I wouldn't be able to walk through the door. However, even if I was not to ever transplant, I am bound by the fear of that last day with my brother and I need to face it and receive that healing from those painful and scary moments. I have been greatly encouraged by Delia's journey and her transplant and it has led me to think a lot about my brother and what happened and I have had a desire to deal with it. I think God has finally given me the courage and strength to go through this. I am really scared and nervous about this all. When I see my haem/oncol this Wednesday I will talk to him about all this. I hope I won't break down. I have never been able to chat about this stuff without, literally, freaking out.

Well, next infusion is in 5 weeks time. I will be interested to see what my IgG levels are then.

One more week of school left and then it is Easter and school holidays :-)

Ok, I am tired so I am going to go.

Update more later.

Love Charisse

Be Brave and Shave........

Greetings everyone,
well I have been feeling a bit better this week. I am finally starting to heal properly from the bowel episode and for the first time today, I had no pain relief during the day! Yay! I was able to walk more properly and move around. Tomorrow I will attempt to do my lap swimming. I also ended up having no infection even though I had a script for antibiotics just in case, I didn't have to use it and I am relieved :-)

I am starting to get used to our cat, Jerry, not being here. I still miss him greatly. We all do. However, it is getting easier. Isaac is definitely finding it easier and life is moving along. Isaac says he misses Jerry and mentioned calling the next kitten, Jerry....but we will discourage him from that I think. Our other cat, Matilda, has stepped up to the bar really. She has chosen to join us in the lounge room at night just like Jerry used to. She is more cuddly and on our laps and heaps playful. We have to get the scratchy pole out for her at night and play with some wool. She ran round and round the lounge with Isaac and wool on Saturday which is really different. We are enjoying her company! It makes things easier :-)

What else has been happening. Be brave and shave.....hehe. The Leukaemia Foundation has a huge fundraiser once a year. It used to be that you tell people you are going to shave off all your hair, they donate money to the cause, and on a certain date you shave! Well now this can include colouring your hair, waxing certain parts of the body or shaving! Since the Leukaemia Foundation does a lot of work for leukaemia and other blood disorders, it will also help FA even though they don't do work specifically on our rare disease, FA. Alan decided to partipate and he got some good donations. Alan chose to colour his hair, shave off his beard and wax his whole back! Yes, Alan has a hairy back....not disgustingly hairy but he has not liked it. So today was the day for Alan. I have provided some pictures. Here he is with a beard, shaving it off and the final product, without a beard. Then he went to the hair dresser for a colour..........

They convinced him to tint his eyebrows too....since he went from being light to a deep, chocolate brown colour....hehe. Alan having his eyebrows tinted below.

The the back waxing and Alan said it hurt A LOT! Apparently this picture was taken when it hurt the most! Hehe

His back without hair and red......

The final product. Alan looks SO different and I am not sure what to think. He still looks nice and not disgusting. He always looks so young without his beard! I can't get over the eye brows....hehe So well done, Alan...and for a great cause and you raised some good money as well! How cool would it be to have a fundraiser that is just as fun!!!! Haha!

So on to another topic. Just over a week ago I became a new Aunty to my 2nd niece, Elizabeth. Here are some photos of her just 3 days old. My sister tells me she looks like me. She has similar lips.......

Me with my 2 nieces, Eliana and Elizabeth, and my gorgeous son, Isaac

Me and my 2 nieces and my mum...

This is Elizabeth the day she was born......a bit different the the 3 days later at the top!

The day Elizabeth was born......we have similar faces

She was awake for almost an hour and a half, just looking at me.........she is beautiful. I am a proud Aunty.

Well, that is enough excitement for today. Thanks for stopping by! I will have more news later I am sure! I am off to relax with Alan!

Love Charisse

A discouraging week...not feeling too well

Well this week is just not going how I want it to go! First infusion which is pretty normal for me every 4 weeks, then a very late night with trying to save our cat, the death of our cat and then the grief and then a horrible episode that I sometimes have with my bowel. Because that can be all so personal, I won't go into details. However, it has left me debilitated the whole week. I can't drive the car, or walk properly, or bend down or lift things and I am feeling feverish. I know that on top of this I have an infusion reaction which already makes me feel hot, flushed, nauseated, tired and lethargic. Add grief for the cat and the very late night at 3am while trying to treat him.....and add this episode the next morning and I am feeling SO unwell it is not funny. In fact, I have been taking digesic for this terrible pain. One time I had one of these episodes I was in hospital having morphine. I have been trying to avoid that. However, I am feeling concerned that I am getting ferverish at times.......it could be just all a part of infusion reaction but I feel doubly worse and I am scared to get an infection from the episode (leave that up to your imagination ......hehe). So it looks like tomorrow Alan will ring my specialist and check if I should be on a course of antibiotics with the lower neutrophils to avoid unnecessary infection, especially since I am not feeling well at all.

I have not had an episode this bad for a long while and I forgot how long it takes to recover.....sometimes a week to a week and a half and this just happened to be a bad one and 4 days later I feel NO better at all! I am also more nauseated and having to take anti-emetics (anti-nausea). Usually with infusion I can manage to keep off those. Although last infusion I was so nauseated on one day I did take a maxolon. However, this is ridiculous. I crawl out of bed in the morning feeling horrible. It is normal to feel fatigued and like I didn't sleep with infusion but I feel even worse than usual and it has made me cry a bit.

Here I am complaining about this and brave Delia is in transplant putting up with a lot more. I feel like a wimp. Go gal! You are amazing!

I just think that this week has been an extra wipe out. I am still upset about the cat. I still feel like it is my fault for not noticing and I need to express this to deal with these feelings. Because of all that, I didn't get the rest needed after infusion....the first 2 days rest are critical for not a bad infusion reaction and then I had this episode and I am just real emotional. I know that I take death real hard. I know that after living a life with FA where you are fighting against death all the time, when it happens....even to an animal, I just start to cry and wail....which is exactly what I have been doing when Isaac is not around. The "absentnace"....not even a word I am sure....of Jerry our cat reminds me of what it was like to suddenly not have my brother around after he died a month after transplant. I hate this heaviness.......I don't like my environment to change and I have to admit that feeling those feelings that I so closely associate with my brother, Shannon, are scary and I hate reliving them. Yes, Jerry is a cat and not a human being but the grief still reminds me. It is different to a degree. Well it is different but then why am I so easily reminded and thrown back into those moments when we lost Shannon?

Last night I was up about 6 times with pretty severe pain. It made me feel really tired. Do you mind praying for me? I have seen prayer work lots of times in the last 3 to 4 months. Just today God did something special.

It has been a bit of a discouraging week even though there have been special moments.

I am a new Aunty! Did I tell you that? I will post some pictures of me and the baby! Baby Elizabeth. She is my second niece. That was a happy moment.

Well, I need some sleep. Thank you for your support guys. To be able to share with you really helps me work through things. I want to thank everyone who gave me support when our cat, Jerry died. It meant a lot.
Love Charisse

Our cat died

Hello People,

last night was a really hard night. Isaac's cat, his pride and joy, passed away after being bitten by a brown snake. I feel SO bad and SO guilty.

He came home for dinner as per usual and seemed fine. When we were doing devotions as a family, Jerry was there on Isaac's bed pussy footing and purring as per usual. No dramas. Shortly after that he climbed onto his bed in the lounge room and went to sleep. A couple of times during the night like at 9.30pm and 10pm I noticed him shuffling around a little weird but I also thought he was being a sleepy cat. I had no idea he had been bitten by a snake and that he was becoming paralysed. At 1115 pm something about Jerry concerned me and so we went to check on him and he was paralysed down half of his side and breathing harshly. I immediately started to think either a tick, a snake bite or a stroke. However, he is not even 3 years old yet and so a stroke would seem real unlikely. I started to pray for him and stroke him as he seemed distressed. It broke my heart. Isaac was in bed and so Alan took him to the vet hospital down the road and they tried to work out what was happening and what treatment. They thought it was a clot but then his temperature started to drop critically and that is like a snake bite. So they were going to treat that. Jerry became critical and they started to try and warm him and give him injections for the anti-venom. Then they started the anti-venom. Alan came home to me because I was a wreck. By now it was last into the night like 2am. I had been crying and crying and dreading telling Isaac the next morning if he didn't survive. I went to bed, after hours of praying for Jerry, at about 2.40am. Apparently they rang at 3.10am to say that he had passed away. The vet said that he just started to deteriorate VERY quickly despite the anti-venom going in. That they could do nothing to help him past that point. So he died and I am SO sad. I have had tears a lot through the day and night. I feel lonely without him because he used to cuddle us in the lounge every night. He would sleep on his bed in the lounge and tonight he wasn't there. I feel weird, strange and I hate the heaviness of grief. I know he is an animal but this heaviness reminds me of what it was like after my brother died a month after his transplant.

I had to write because I feel scared and lonely even though Alan is still here. We have another cat called Matilda but she is a different personality. Isaac could do anything to Jerry. They were so close and shared many hugs and cuddles and games and all sorts.

My heart broke when we had to tell Isaac who then cried quite forcefully for an hour to an hour and a half. He has been coping ok though. He has been drawing pictures during the day of him and Jerry and us as a family. He has role played about the snake which is helping him work through it. He has a photo of Jerry and himself that he carries around with him and he has it by his bed right now as he sleeps. He also has Jerry's collar because he wants to smell Jerry. My heart aches for my little fellow right now who is grieving. Tonight when he was going to bed, he became distressed and cried and took a while to settle. We just want out cat back again. For the pain of loss to go.

Jerry helped us all cope with FA. We will let Isaac have another cat at some point. Matilda is really Alan and my cat because she doesn't put up with Isaac's rough play but hopefully he finds some comfort in the fact that she cares so much and has been affectionate.

So that has been our day. Please pray things turn back to normal.
Love Charisse

Random Stuff and Medical Update

Hi Everyone,
it feels like it has been forever since I updated. We have been busy, busy, busy. We have had multiple children's parties and birthdays. Isaac is also at home now on a Wednesday from about 12pm. He is gaining a lot of rest from having Wednesdays at home. Last week was his first week doing this and on Thursday and Friday he coped heaps better with school and got all his spelling words right in his test :-) We were all so proud of him. He has been getting to bed a bit earlier too. I also feel like I am getting into a routine with homework, school, play and rest etc.

I have an IVIG infusion this Friday which I am not really looking forward too. But oh well. The next one will be in 4 weeks and then the trial of 5 weeks and 6 weeks. Hopefully my levels hold like the haematologist is expecting and I can then go 6 weekly instead of 4 weekly for these infusions.

I have been very clumsy lately. A couple of weeks ago I got my arm caught in a cupboard door. It was a spring door and I didn't realise it wasn't open properly and it flung back on my arms stretched up to the top level. It hurt. One arm didn't bruise and one bruised nicely (horrid looking).

Sunday night I was clever again and with my arms out over my head, pulling my fingers through my hair, I turned around very swiftly and smacked my elbow into the door post. A VERY loud snapping sound frightened me SO badly. I then ran into the kitchen, quite distressed, to get ice and was repeating over and over, "oh no, my arm is going to be black and blue!" I was quite upset and very much in pain. Fire type feeling ran down my arm to my wrist and fingers and t my shoulder and I couldn't lean on my arm. I was hoping I hadn't broken anything. The next day it was still really sore and I was nauseated. Took some maxolon which helped with the nausea but I couldn't move my fingers or wrist properly and certainly couldn't lean on my arm. However, guess what??? No outward bruising at all! My arm has no bruising on it! What a miracle!!! It still has no bruising and obviously I am typing properly now. I did go to the doctor yesterday and after making me do things, he told me I had bruised my ulnar and radial nerves inside my arm which is why I am having so much trouble with pain in my wrist and fingers. I still can't lean on my elbow or on my arm because I get shoots of pain. However, it is much better and I am not nauseated anymore. I have been able to use my arm normally but carefully with manageable pain :-) I am SO glad it is not broken. I can't describe how hard I hit that door post! So that is my adventure so far :-)

Some of the random things we have been doing as a family. Let me see. Oh yes! Below is a picture of Alan and I after a children's party that Isaac was invited to. Yes, Isaac was invited but parents also stayed. They had hired someone to do face painting and Alan and I decided to join in. Obviously Alan is a clown and I am a butterfly....in case you didn't know. Hehe. This was the end of the day and so Alan's make up is leaking a bit. He has white paint throughout his beard! :-)
Isaac didn't want his face painted but he wanted a snake painted on his arm. This is a mean looking snake! I was proud of Isaac having a go!

Another child's birthday party. Yep, Isaac was invited and Alan and I stayed as well. They went bowling! It was so much fun to watch all the 6 and 7 year olds bowl. Hehe. Isaac actually won! Alan helped him with the last 2 goes because Isaac was tired. I was SO surprised at Isaac picking up that bowling ball and hauling it to the ramp!

Below is a picture of Isaac and one of his best friends from school.....mucking around by the seats saying they were stuck and laughing. It was cute. Action shot!

Another photo of Isaac and 2 of his best mates! In case you are new....Isaac is on the left.

An action shot of Isaac bowling using the ramp!

More random stuff. You have probably all heard about our devastating fires here in Australia. They are in a different State to where Alan, Isaac and I live. However, Isaac's school is buddied with another school in that State. That school lost practically everything we are told. Some members killed and all sorts. So Isaac's school had a "funny hat day" to raise money for this school and the community. This is one of Isaac's best mates with his funny hat. If you wanted to wear a funny at you needed to donate money to the cause :-) The junior school raised about $3000 I think.

Here is Isaac's funny hat. Hehe. A turtle shower cap on top of a normal, karky (sp?), bucket hat. Very cute.

Funny hats!

We have been up to all sorts. Alan has a personal trainer and he has been doing this for about 9 weeks. Things are going well. This was on a day where his personal trainer had upped his training to a new level. He fell asleep after his training and Isaac decided he needed to be "doctored". Out came the medical kit and Alan had his arm bandaged, temperature taken, heart listened to, blood taken....you name it, he had it. Hehe. It was cute. Alan is now used to this new workout and not sleepy anymore :-)

It is interesting what Isaac gets up to when you are asleep. I declare! This is after Alan has done some training at some other point. He is wearing his training clothes and is most likely almost asleep. Hehe. Isaac has everything piled high on top of Alan....hehe

We had prayer meeting as we always do on a Thursday night. I know it was a night that Isaac was calling out more than usual. Then he went quiet and we knew he had fallen asleep. After everyone left that night which was close to 11pm, we walked around the corner to see Isaac asleep in the doorway. Hehe.....cute

Random stuff again! Haha! Uncle Darren (Alan's brother) and Aunty Angela have a new puppy. Well they got one a few weeks ago now. His name is Dexter and we went to visit. He would have grown a lot since this visit. Here is Alan having a cuddle....hehe

This is such a sweet photo of Dexter! Awwww......little baby puppy!

At least once a year we head off for a visit to the Big Rocking Horse which is one of our attractions here in South Australia. It also has an animal park where you can hand feed the animals. Here I am in my great, comfortable, pink dress.....hehe.....and groovy hat!

This is at the very top of the Big Rocking Horse. It is quite high up!

Such a flattering photo of myself.....NOT!! I thought it was amusing!

Going up the first flight of stairs.....

The first level :-)

Going up the stairs to the second level :-)

We went up the rocking horse twice. However, I didn't go all the way to the top on the second round. I thought I would take a picture of Isaac and Alan way up there on the head.

The little rocking horse beside the big one. Every year when we go, without fail, we take a picture of Isaac on this rocking horse and you can see how big he has grown since the last one!

So that is some of our excitement! Well today when I was helping Isaac with his homework, Alan decided to get on the roof to clear some gutters. We have been having rain the last 2 days which is a miracle!!! We are SO dry here in South Australia. Praise the Lord for the rain. Hehe. Anyway, so Alan is on the roof clearing the gutter and Isaac and I are doing his homework and we here a BANG and a SCRAPE. I said to Isaac, "what was that? I hope daddy is ok". Hehe...but I didn't think to go and check because I then heard footsteps again. Haha. Well when Alan came in he had reddy colour on his white shirt. It was all smugged and I looked at him and said, "Is everything all right out there?" and he started laughing. He HAD lost his footing and slid about half a metre or so. Heart pounding reached up to grab the vent from the toilet on the roof to stabalise himself and pull himself back up! He is SO lucky he didn't fall off the roof! Praise the Lord for protecting him. So yes.....that's Alan for you! Haha.....hehe. I am glad we didn't have a tradegy though.

All right. I cancelled my port surgery for sure. My neutrophils are back up again. Platelets are bouncing everywhere right now which always makes me feel uneasy so keep praying.

Nothing else to report. Keep praying for the Cliftons and little Emma as they sort out what they are doing with the monosomy 7 report that came back from her bone marrow aspiration/biopsy. Please keep Delia in prayer as she has begun her journey with here Bone marrow transplant and John Hanna as he recovers from his ear surgery. I could name so many other FA families! Keep them in prayer.

Thanks for checking up on me!

Love Charisse