Finally! An Update!

Hello All,
I am sorry for the delay in updating my blog. There has been a lot going on. I am one year older! I can't believe I am 30! I lived to thirty which is wonderful. I have not updated for a little while because of some dramas. I had a big scare with one of my tests but a re-test put that at ease. I found out about this the day of my birthday party and still was able to enjoy my party, but was a mess for about 4 days afterwards, including not falling asleep til 3 tp 4am each night. However, fears were laid to rest with this scare when a re-test was done.

I also had a routine breast and liver ultrasound which was normal and fine. I still have a gall stone but hey....suppose it will need to be cut out sometime when it causes problems. I have had it since Isaac was a baby and he is 5 now. It has gradually gotten a little bigger but is not causing any problems.

Yes, my party experience was enjoyable. It was at a cottage called Tally Ho Lodge. It was a beautiful evening with finger food of all sorts equal to the amount of 4 courses. It was evening wear. Every did very well in dressing up! I felt like a princess in my dress and with my jewellery. It was quite an experience. Mum does some professional type photography for a hobby and she took photos for us. I had a wonderful mud type cake with white chocolate on it. Below are some photos of the people who were there on the night.
This is Alan and I. I always look so small when I am standing next to people!Me! In my dress!

This is Alan and his brother, Darren.

Alan, his brother, Darren, and his mum, Denise (my beautiful mother-in-law)

This is my direct family: Dad (Ps Ralph), mum (Ps. Wilma), myself and my sister, Liesl

Darren (Alan's brother) and his partner, Angela.

My brother in law, Tim (Liesl's hubby) and Liesl, my sister

My Father-in-law, Alex and ME!!!!

My mother and father in law! (Alex and Denise)

My Dad and Mum! LOVE YOU GUYS!!!!!!

My beautiful Mum, myself and my sister, Liesl.....THE THREE GIRLS!!!

My Handsome dad and Me!!!! You looked so handsome on the night, Dad!

This is my brother -in-law, Jamie and Angela

Jordan, Alan's cousin and Me!

One of my really good friends, Leah and myself!

Another really good friend....or good friends, Laura and Rodney

Some more really good friends, Rachelle and Luke!

Excellent friends, Leah and Stephen!

Ps David and Ps Carol....also very good friends.

Good friends that Alan and I have known for years! Cathy and James! Thanks for coming guys. It was so special having you there.

Dear Julie and Leighton! They have 6 girls and my Isaac is for sure in love with at least 2 of them! Haha! It is cute.

It was a good evening and I do have more photos of just general hanging out. I didn't download one of the cake. Oh well. it is time to retire for the evening now. Tomorrow I hope to get to the pool and do some laps. I need to keep fit!

Bless you all and thanks for checking up on me. OH, I have IVIG infusion this Friday. Did I tell you that I did a short shift in the Emergency Room at my hospital. I am an RN...it was good.

Love you all,

Charisse

Inside House Pictures

Hello All,
let's take a walk through our new house briefly. Now, these are not good quality pictures. Our camera has had it I think. I mean, I tried SO hard to not shake while taking these pictures and all of them ended up blurry. You will be able to see they are blurry but on the computer when I load them up they are SO blurry and look terrible. I am frustrated. I can never get good shots. We need a new camera because I don't think it is my ability anymore...it is the camera. Anyway. We start with the sunken lounge. You walk in the front door and this is the lounge on the left........the wall looks pinkish in the photo but it is no way pink. It is a deep, rusty apricot colour. Our room will look different again when we purchase our new lounge suite. We are holding on to these ones for someone else. They are not our lounges. There is a nice open, gass fireplace...and then a step up to the dinning room...... This is blurry...oh well...you can see it steps up to the dinning room....a couple of photos...then leads into the kitchen....

Oh....here is the kitchen. I will take a photo when there is no clutter and no dishes as we had only had dinner a short while ago and have not yet cleaned up....so the kitchen usually looks a lot nicer. It is, however, an older kitchen than our other house and we will re-do it sometime.

Ah yes...back to the dinning room which leads into the kitchen.

See how it leads into the kitchen....haha!

Ah yes...the view from the kitchen...once again...a lot of clutter still...I will take photos when there is no clutter. This is Isaac's play room here with all his toys...and the piano. It has 3 doors leading off of it...the laundry, the spare room and Isaac's room.

Isaac's room. He is actually asleep so I quickly took a brief photo but didn't want to disturb him. He wants his room painted light blue...we would get him some new curtains and stuff probably and put up all his winnie the pooh stuff again to make him feel more at home.

This is a terrible photo...our house really is more stunning than these photos...but this gives you an idea of the colour of our bathroom which I like and is quite stunning in real life....

Going down the hallway from the kitchen and the play room. The bathroom comes off the side here and the door down the end it the main bedroom...sorry no pictures on here of that tonight.

This is the enterance way at the door at the front again...so we did a big circle really....

Sorry about all the gaps in the photos..I am slack tonight. I will get better photos...but at least this gives an idea. It is a nice house. I still miss my old one......we have tenants chosen for that house now.

The bone marrow results. The people at the IMVS transplant lab have now looked at my slides. They are confused by my marrow and are not willing to give me a count of my blasts just yet. They said my marrow is so confusing and different with the other FA cells that it is hard to tell what are the normal cells of FA which are abnormal cells and what are blasts.....this has always been the way with my marrow and why I insist on this lab doing the count. So, they are pulling up all my slides of the last number of years to compare because they need to get a feel of how my marrow is...what is "normal" for me so they count correctly. At least they are not just counting with what they "think" could be blasts but comparing and getting familiar with my past slides again. This should enable them to give me a more accurate count. It has only taken them 5 weeks to get to this (ahhhhhhhh!!!!!) I have an appointment with this haematologist to discuss how inappropriately this was done. The slides should have been looked at 5 weeks ago and not left til now...of when they are confused and finally are doing as I ask...frustrating but they are taking me seriously. It is not surprising about my marrow...I have always had marrow that looks strange like this.

It is my birthday in a week and I will be 30. I made it to 30 with FA!!!! Wow...this calls for a celebration so on the 16th May I am having a party that is formal wear in a cottage in the hills. Girls are wearing evening gowns and men...suits with bowties or ties. I have a new dress and it is beautiful. I feel like a bride again. I will post pictures. It will be a grand even to celebrate my life. The meal is made up of nice finger food equal to a 4 course meal! I feel like I am attending a ball in my dress!

Love you all,

Charisse

Oh Dear....

Oh Dear,

that is what I feel like saying....and a big *SIGH* accompanied with it.

Isaac had tonsilitis. We took him to the doctor on Thursday and he had ulcers in his mouth and some puss and redness by his tonsil. So he is on antibiotic. Not long after beginning that he broke out with a couple of nasty ulcers on his bottom lip and that is all swollen too. My little boy is not one happy chappy. He has been waking up frequently during the night and whinning a lot. Today, it has felt like he has cried all day. I have a headache. Sometimes crying really gets at you, especially the whinning that goes along with it. He has not been able to do one thing today without breaking down. He is now in bed and I am glad because both Alan and I were starting to feel crazy while he has been crying and whinning. We have not been able to brush his teeth so are trying to do salt washes for his mouth care...very hard to do with a 4 1/2 year old who doesn't want a bar of it. That has been hard. We have needed to wipe over his broken tooth with a salt water tissue as well. He has swollen gums too. I know dear Alan has been dealing a lot with all the physical stuff with Isaac because it still exhausts me too much to do too much. Make sense? I hope Isaac sleeps well this afternoon.

I got to church last Sunday night for the worship. It was lovely. I must be heaps sensitive to perfume right now. I almost fainted at the church because of the ladies walking past me with perfume. We will hopefully get back for the worship again tonight.

Alan's brithday dinner was good. So many people. If you were there and are reading this...thank you for coming. I handled the night ok except when it hit 9pm. I had to ask Alan to help me on the floor in the corner because I was going to faint and throw up. I ended up throwing up a little there...just part of the exhaustion and the recovery from pneumonia. Mum and dad took me home earlier than Alan and then after everyone left again at home...I threw up again. I couldn't fall asleep until 3am...so I was so tired and slept the next day until 3.45pm!

Today I am still recovering from that party.

OK, I am going to go and sit down while Isaac is asleep and enjoy the quiet.

Thanks for checking up on me!
Love Charisse

Alan's birthday/ My appointment

Hello People,

well today I had an apppointment with my specialist. I had bloods but will need to get the results on Friday. It is a private practice and hospital and I had some hiccups along the way today and got my bloods done too late...hehe.

I woke up this morning with a sore mouth and throat and looked into my mouth and there are white yucky stuff....oh dear...oral fungal infection. Doctor confirmed this and so I am taking acidophilus and Nilstat...anti fungal (which I was already on). However, the antibiotics I had with IV and oral have been so strong and my system weak so it was bound to happen. The infection is gone. There is just a little bit of fluid still on the lung and I am SO exhausted still! I hate this lack of energy. Today it made me feel so sick that I threw up my breakfast! That was horrible. And then I said, "Happy Birthday Alan" sometime after the event. I felt so bad throwing up on his birthday.

Anyway, so I wanted to tell you all that it is Alan's birthday today...the 5th September and he is 30 years old! It has been heaps hard on the family with the sickness and I wanted Alan to feel special....SO I was wondering if some people could send him a birthday message to his email.

This is his email:

alan@fanconi.org.au


So please leave him a message if you have the time. You are great with leaving messages for me and I thank you for that.

I also want to honour my brother, Shannon, who had FA and died in 1994, October. It was his birthday on the 1st September and if he was alive...he would have been 27 years old. I miss him heaps.

Thanks for checking up on me guys. I will update with results when I get them.
Love Charisse
Happy Birthday Alan!!!!!

Birthday Party

Well I had a good birthday party..."How to Host a Murder" night! It was great. We finished playing...or acting out the game at 12 mid-night and I didn't get to bed until 2.30am. I can tell you I was worried it would affect my health. However, I rested the next day....feeling totally exhausted. I had a great time. My friends all dressed up in the era that the game was in....we were all actresses or writers or producers of a movie...and while we were celebrating the movie that we were about to release at a pre-dinner event someone was "murdered" and we listened to a tape with the detective talking to us...it was up to us to find out who did it and he wouldn't go to the copes about what he knew about us. SO the murder mystery began with us following our prompts in our books and asking questions to gain as much info from everyon possible so we could make an accusation on who did it. It was fun. There were 4 rounds to the game...and each round revealed more about the people around you and you had to question their actions and then the whole group would talk about it. What fun! I would like to do it again. I feel like it was the best birthday! I really had a good time with my birthday...hehe

Unfortunately, Sunday I hit a downer. You all know that sometimes I become so anxious about life that I just go into a spin and have huge anxiety attacks...this happened for 2 days straight. I wanted to be sedated because I felt so distressed. We dropped Isaac off at nanna so he would not witness how stressed I was...something did trigger it all off....a doctor's appointment actually triggered it off but it was terrible.

What a contrast from a great birthday to complete anxiety.

There has been lots of chats with my sister and mum and dad and Alan and my doctors...to help me through what I am going through...not to mention the fact that I rely of Jesus, my God the most...because without Him I honestly think I would not be here....emotionally or physically.

I had prayer meeting on Thursday night and was able to share my intimate thoughts with them all and the amazing support that actually happened that night was amazing. I have been needing support with the intimate thoughts I have had and with my search with life and having FA for a long time and it was good to hear those people sharing this burden with me and really sounding like they understood to the level that they could. I felt more peace about things that night...that doesn't mean my struggle of having anxiety over life and FA is gone...but it helps when you have more peace over your decisions and how God is leading the way and your friends and family are supporting you.

I had my IVIG infusion today. What a day! It felt so long. The red cross got confused and apparently "forgot" that I have my infusions 4 weekly and never sent my stuff...I had to wait a lot of the day for it...then they could not get a jelco in for about 1 1/2 hours...they tried 5 times and finally got it...my arms are heaps sore.....I never bleed when they want me too! Ha...not because I have ultra high platelets but becasue it is just me...I don't seem to bleed easily or bruise easily...my body copes well...but today with two of the places they tried....they proded and poked in that one vein for a long time and I was bound to bruise....in both areas...when they were proding and poking in and out and around that vein I felt so ill....and very sore....but I closed my eyes and tried to breathe. There was more to today but it is all a long story!

Isaac visited me for the first time at infusion today and had lots of questions about the IV and the bandaides and "yellow" stuff (antiseptic) on my arm from all the jelco tries....he is so sweet...he didn't want to leave and said, "I need you mummy"...I told him that he needed to go home for a sleep and mummy will see you after I finish my medicine and be at home tonight.....he ran into the middle of the room at the center and blew me the biggest kiss...everyone in the room thought he was so sweet and was smiling and cooing and awwing and stuff....so sweet.

So not I feel wiped out and should be going to bed to minimise the reactions of the IVIG!

Bless you all and hope you are doing well.
Love Charisse