FA Day 2008

FA Day in Australia is the 29th October every year. This year we decided to have a BBQ on the 25th October, a Saturday, in honour of the 29th! Keep in mind that FA Australia is still small and we are still getting to know FA Families within the different states of Australia. So we have 3 states where we are definitely aware of FA families and are in regular contact with. These are in Western Australia, New South Whales and South Australia. We do know of families in Queensland and in Melbourne, Victoria but we don't have a close enough connection to be able to organise something like this in their states. If they went to the website, they would know about FA Day. Anyone who wants to participate on that day is welcome even if we don't know them well. However, we will build the closer relationships with those families at some point and we hope to see families from those states coming to future camps. So the existing families had BBQ's today on the 25th!

We live in Adelaide. We are aware of 3 families in Adelaide with FA. Unfortunately one family live about 2 hours out of Adelaide and are farmers. It just happened to be that the harvest fell right at the time of our BBQ so they couldn 't come. However, we had 2 families at our BBQ. Debbie, Steven and their kids - Stephany, Baily, Isla (8 years and has FA, post transplant last year) and Donna. The other family was my family - Alan, Isaac and I (FA Adult - 30 years, no transplant) my mum and dad, sister, her husband (Tim) and daughter (Eliana) So with both our families we had 14 people at our BBQ. It was lovely. It was a very hot day to have a picnic though. Temperature was about 38 degrees celcius which is about 100.4 degrees F. It was also quite windy. Despite the weather conditions, we all had a good time. We had sausages and kababs for lunch with salad. We all had an ice-cream afterwards which was nice. There was a nice, big playground there and the kids enjoyed that. We brought a ball and such which kept the kids occupied and the adults just relaxed and chatted. There was a pond near by and the kids enjoyed feeding the ducks.

Below: This is Debbie, Steven and their kids. That is also Isaac in the photo. He and Donna, who is their youngest (4) got along really well and spent most of the day hanging out together. Isla is the one who has FA. She is 8 and had a transplant last year. She is going really well. She is the girl holding the full cup of red cordial.
Debbie and Steven in the background. Isaac and Donna showing me how well they can drink! Ha! Have you noticed Isaac's shirt? These t-shirts come in all different sizes and colours and were our fundraiser at camp.

Steven and Debbie. Isla is on her dad's knee. She has FA (i know I have already said that ...hehe). Every time I took a photo of Debbie she had her eyes closed and would probably be horrified at the photo! Ha! Debbie is a very sweet lady.

My mum, Wilma, Caz and Myself! (notice my t-shirt?)

Feeding the ducks! Isla (FA) and Isaac standing next to each other

Isaac and Isla (FA ) again.

More duck feeding! It is always a bit hit at this park!

More duck feeding!

David, Karl and Carol (Caz). These people....well what can I say? They gate crashed! They are our friends and were in the area. It was fun to have them there and they bought Fanconi Anaemia Caps which were our fundraiser for FA Day this year....and they are nice caps. You can see a bit of them here. Thanks for buying a couple of hats guys!

The two "FA kids"....hehe, Isla (8) and I (Charisse - 30)

I was proud to wear my FA cap! Ha! Debbie and myself....Donna snuggling in

The Gang! Handing out FA caps to those who wanted to buy them!

Some view of the park. Already becoming dry and we have only just started summer!

Eating, drinking and relaxing!

Alan cooking the Barby! Like his shirt and his FA cap? That is our official "uniform"

The kids back at the pond.....aren't they cute? I am amazed at the children's sizes......Donna on the left is only 4 but Isaac next to her is almost 6 years old. The Isla who has FA is standing far right and she is almost 8. Donna, Isaac and Isla are all similar sizes despite their age differences!

So yes, our official fundraiser this year was Fanconi Anaemia Caps. They are really nice. I will have to take a closer picture of them. I should take a closer picture of our t-shirts as well! They were popular at camp! The caps were also sent to the other states for them to sell at their BBQ's as well. So I hope they were a hit! I have not heard how the other BBQ's went yet but I am sure that Brooke will let us know how things went with her and we will see photos. It is great to finally see Australian families bonding and getting support and going "out there" to help with awareness and fundraising and support. We have had none of this happening before Fanconi Anaemia Australia was formed and it has taken us a couple of years to get to this stage. It is nice and rewarding and encouraging for all our families. We look forward to coming in contact with more families and getting to know more of them in a more personal way. I am aware that there are families in states that we have not yet had contact with. We have to wait to be contacted because of confidentiality laws. However, it is a working progress!

Thanks for reading. I hope you enjoyed the photos!

Love Charisse

Hello Everyone,

Well, life has calmed down since I returned from the concert....hehe. I had infusion the Friday just gone. It went fine. Although, I am finding that I am more and more anxious each time I go. Not because of the IVIG itself but my arms are really quite tender and sore. All my veins are getting sore. They are needing to dig deeper and more to get a vein to use for the IVIG. Isaac turns 6 this November and I started having this treatment when he was about 10 months old. So I suppose I have been getting stuck for about 5 years, every 4 weeks for blood and for IVIG therapy. I know way back then they mentioned having some sort of port which would stop them needing to use my veins and I refused. Having a port makes me feel so abnormal and reminds me that I have the FA. I wanted to live free of any of those thoughts. I have really found the idea of a port very discouraging and have plodded along during the past 5 years with pokes. I have always had really bad veins that collapse easily. Now, my arms are getting sore and I am feeling anxious and because the platelets are lower, when they dig real deep and continually, I get the bruises which, in turn, make me upset. I know that people with normal platelets bruise badly when someone has attacked them with a needle but having this done every 4 weeks is starting to be too much. I didn't bruise from this last episode but they had such a hard time finding somewhere to go that I burst out in tears. The nurse came up and asked me if they had upset me and I told them I was not mad at them and that I was upset with the circumstances and how I feel about a port. I asked them to show me someone with a port not connected. The tubes and connections make me feel abnormal. A lady there having chemo came and showed me the port that they are encouraging me to use while having IVIG. It is completely concealed under the skin. There is no outside access at all. In fact when they hook you up, they place the needle in through the skin and into the plastic port underneath and it is like putting an IV in......when they take it out....there is a dot where the needle is taken out and it heals over like an IV dot......no one can see it at all. There is a slight bump where it is under the skin on the side of your chest. Because my arms are so sore....I may need to go with this. Because I am a nurse, I needed something that could not be open to infection with working at the hospital......being a mum and all sorts....and I wanted something that would be hidden......and this is disguised completely. I am NOT excited about the whole thing but may be it is time. If I ever stop IVIG, I can take it out again. It is inserted like a pacemaker.....they slide it in under the skin with a small, surgical incision. SO Alan and I are discussing this. It does not mean that I am gravely sick! I have a problem with people thinking that!
On the 29th October we celebrate FA Day here in Australia. This year, in the States that we have discovered FA Families, we are having a joint BBQ at a park on the 25th which is a Saturday. We have FA Caps that will be selling as our fundraiser there and it should be a lot of fun. It will give the families who met at camp, another opportunity to be with each other and have some fun! It has been great to see new friendships formed as a result of camp! I will take plenty of photos at our Adelaide, South Australian, BBQ!!!
Isaac's birthday is coming up on the 8th of November and he will be 6 years old! They grow up so fast :-)
On the 1st of November we are having his party. It is an "explorer" party. Isaac will be dressed up as a Captian....like Captian Cook discovering Australia. The kids have to come dressed as his "mighty crew" and they will go on search for land and hidden treasure. Alan is trying to "set the scene" outside...........I will have to take pictures.
On the 8th of November, Isaac's b-day, is the Christmas Pageant and Isaac wants to go to that. So we will take him to that!
On Friday this week I am doing half a day at work which should be nice. Life goes on!

Anyway, this update is almost over. I added a video below. I think it is cute. Completely off the subject. It is a video of Isaac at the dinner table and how cute he is eating his dinner. He didn't know that Alan was recording him while he ate. Excuse my lazy way of saying "vegetables". It is not how we say it here...it is me being lazy. Check out the cute video of Isaac eating and his conversation.....hehe

I am off to bed....enjoy!!!

Love Charisse

David Phelps Concert!

Hello All!
I am back.....again! Hehe. Well the David Phelps concert was GREAT! Magnificent even..... Who is David Phelps you say? For those of you who remember when I went to Camp Sunshine a number of years back I shared a song with you guys on the Talent Night and David Phelps wrote the song. I also sang a David Phelps song at FA Australia Camp. When I minister or sing somewhere, I often use a David Phelps song. He really blesses me with what he writes in the songs. I love to share my Christian Background and David Phelps songs are a great way to share with people. When I am very down with FA, I just watch my DVD's and listen to my CD's with David Phelps singing and I am so touched by the power of God through his music. I sit there with tears falling down my cheeks.

I wanted, so badly, to meet him. And so.....he came to Brisbane, Australia. I was so excited and Alan and I could not afford to send Alan, Isaac and I. We have just come back from holiday on Kangaroo Island as you know......so Alan said for me to go because he knew how much it would mean to me. I was heaps nervous flying on my own. It was only interstate but I was anxious about changing flights. So we decided to contact the airline and organise help for me so I would not get so anxious and upset. Quantas was GREAT. The flight attendents were so nice to me going there and coming back. They helped me get where I needed to and checked on me and made sure I was not anxious.

I also wanted to thank Karien, one of my mother's friends for housing me up for the night. Thank you for looking after me and cooking for me.

Also I want to thank Aliki and Rob. Aliki is an Australian singer who goes around to different events and churches witnessing to people through her music. She has ministered through her music to our church and we know them a bit....mum and dad know her and Rob quite a lot. Aliki managed to be a "support singer" at the David Phelps concert! Go Aliki!!! The first picture is of Aliki singing. I don't know how many people were there. The convention center was pretty full and big! So a good amount of people. I have some of Aliki's CD's and she is a very enjoyable singer to listen to with a great ministry! If you are interested in her music, please go to her website below:

www.aliki.com.au


Oh yes, I have not said why I was thanking Aliki. Well, she and Rob managed to register me as one of their "team" for her and I had access to backstage and her dressing room, the dinner for the team of David Phelps and band, the crew and her team and so on. Thanks to Aliki because if it wasn't for her I would not have been able to be back there. I was able to get a seat in the very front row, in the middle seat, right in line with where David stood and sang. I was REAL close! Haha.....also Aliki spoke with David backstage and told him about me and he said he would meet with me privately after the concert! So THANK YOU ALIKI!!!! Haha......

Another support singer and band was "Alabaster Box" who are very popular here in Australia, on radio and their CD's and stuff are really well known. They have been living in the US for a while but have just come back. This is the singer below . I really enjoyed their music!

Here is David Phelps! Whoo Hoo! Ha.....you can see I am not shy about my enthusiasim. He sang wonderfully. I was right in front of him here.

More pictures!

He was sitting RIGHT in front of me. He was singing "There is a River". Old Gospel Song........beautiful! He sang it SO well.

More pictures!

Ok, I am real tired here. After the concert he ran around to the front of the convention center, behind a desk thingy and signed CD's and also had pictures. Because I had the backstage access I was around there with him with Aliki too. However, I waited to have the private meeting with him in the lounge after he was finished signing. That was 12am!!! So I was really tired in this photo. I really enjoyed meeting him. He shook my hand and I told him about FA and his music and how it had touched me, me using his backing tracks and singing .....we spoke more about FA and he was real sweet. He was very personable and real. He gave me a hug, signed my new CD and obviously, we had a picture. While I was talking to him about FA and losing my brother, I had tears that I could not stop. I didn't ball....just wept a little....very quietly....didn't lose control. It was a dream to meet him. Hehe...I look very little in this photo....oh well.

I had a picture taken with Andrea (sp?). She is a part of David's band and plays a MEAN violin! Ha! I don't know how many of you would know but I am a violinist and learnt from the age of 7. Or was it younger. I was young though. I am actually a very good violinist. I don't mean to sound proud but I am a good violinist and was a teacher for some of my time. I taught at 4 different schools up until I was 24 years old. I also used to play in weddings and at functions. I would do it again but sometimes I feel a bit stressed with everything else. I LOVED watching her play and listening to it. She signed my CD and obvously, we had a picture together. She is taller than me. She is bending her knees for the photo :-)

Does everyone know Billy Graham? Does everyone know Franklin Graham, his son? Does anyone know of William Graham, his grandson? Well at the concert, William Graham, Billy Graham's grandson, spoke for 20 mins at the concert and I really enjoyed his speaking. From the photo below you can see the resemblence between them all. I have heard Franklin Graham speak somewhere else too. Billy Graham is 90 now! Amazing. When I was flying back to Adelaide via Sydney, I found myself on the same plane as Will Graham and his team. One of them recognised me from the concert and said, "hey this is Charisse, Aliki's best friend"....ha, talk about being famous.....hehe. I don't know if I am her best friend but I didn't correct them. It wasn't appropriate. Hehe!

Well, they let me take a few little videos on my camera of David Phelps singing. However, I don't feel it would be right to play them here. Just because of law and so on. I forgot to say what type of singer. He is a tenor and rated as one of the best tenors in the world. He is extremely versatile. If you are interested in his music or work go to:

www.davidphelps.com

Well, it was all very exciting. Ha! I kept running into him back stage but was too shy to say anything. I was even in the prayer circle before the performance and he was right there......one person beside me and then him.....but I was still a bit shy. I am so glad I got to meet him in the end. If I ever had another make a wish....I said that it would always be to go to his concert, meet him and speak privately.....well those wishes came true.....God blessed me. However, I have one more "wish"....hehe.....to sing with him on stage! I will never have a voice like his but oh how I would love to sing with him!

Bless you all,

Thanks for reading,

Love Charisse

Marathon............

Hello All,

yep this is a photo marathon. I wanted to include more photos to show you the beautiful outback of Australia. I am feeling rather patriotic and think that Australia is rustic but absolutely gorgeous. So some more photos from Kangaroo Island that I didn't include in my last post :-)


Obviously you saw pictures of when we went on a guided tour to see the seals on the beach. Here is the sign...I know....very interesting..hehe We walked down this long board walk to the look out at the bottom where we could see seals while waiting for the tour.

Beautiful view hey! That is the board walk.

Some real whale bones! Put together.

Coastline of Kangaroo Island.......beautiful!

A lizard! Isaac wanted me to take a picture of it.

A seal way up on the sand bank. Apparently seals feel the cold just like humans and will climb onto the sand banks to keep warm when the cold winds come around.

Watching the seals.

They were so close to us!

This one came up behind us and made a lot of noise and we were asked to stand slowly and move so that it didn't feel threatened.

Little Sahara....I wanted to put a picture in here that will show how high the sand dunes are. They still look higher than this in real life but look how small Alan and Isaac are!

Foot prints in the Sahara!

Kelly Hill Caves.....outback Australia!

In the caves and looking at special rocks

Spectacular!

Impressive!

Isaac bushed from a full day out!

Coastline...small beaches

more beaches and coastlines...pretty

I wanted you to see our outback roads! Surrounded by bush! Ruggard

Those pelicans....remember the pelican feeding. See how desperate they are?

Sqwabbling!

This pelican hogged a LOT of the food. Because of a person infront I had trouble getting the picture. He had a hard time swallowing the fish.....

Here he is again.....look at his neck....silly thing.

Beautiful. After the pelican feeding we went for a walk on the jetty!

The duck lagoon. I thought the yellow flowers were sweet.

Stunning pictures.....Australia is so beautiful!

This is at the duck lagoon. I posted it because it was Isaac's first photo taking experience and he did a good job!

Bit blurry......

This was in the middle of the "Gum Forest"

Fires.....all over one part of the island.

New growth!

The coastline near Admiral Arch where the New Zealand Seals can be spotted.

more coastline

See the seals?

That cute one that was lying by the board walk at Admiral Arch.....

Country Side and a lighthouse!

Beautiful view! Can you see remarkable rock from here.....I can!

Remarkable Rock. Want more explanation? Go to the first entry of Kangaroo Island and our holiday.

Yep, we do have koalas and kangaroos just running across our roads in the outback. This is a koala, obviously!

More coastline....more Australia

Australia is beautiful!

Alan and I wanted to try and find a specific lighthouse and the only way we knew how to get there was to follow the light. This was obviously at night time which is when we wanted to find it. We went outback to try and find it over the most bumpiest, dirt road or.....paddock really. It was fun. We laughed a lot. Saw a lot of wild life but never made it to the lighthouse. This is as close as we came.....hehe

When we came back over the ferry we were at Cape Jervis and they had a lighthouse too. We sat in the car and watched it. It was peaceful.

Ok, so now it is still school holidays and Isaac goes back to school on Monday. He had some friends over to play on Wednesday and they made a BIG track! Daddy did actually but they enjoyed it!

We also went to a Colin Buchanan concert yesterday (Thurs). Isaac has a lot of his DVD's and a CD of his. He is a Christian singer who does stuff for kids. He has also been on play school and play house Disney. He is great. Isaac gets so shy though and doesn't want to look at him when we are close up...hehe

Isaac, Eliana, Liesl, Colin and I. (Liesl -my sister, Eliana - my niece)

Liesl, Eliana and Colin

Colin is SO funny. Here he is dressed as a pirate and singing "are you serving Captian Jesus?"

Hehe....restling with a crocodile. "Sin is like a great big crocodile"

He is doing something silly with gorilla gloves on. Now the two videos below.......one are the seals romping around on the beach which is quite good to watch and fascinating. The other is Isaac and Eliana singing at Colin Buchanan...enjoy!

Ooppp....I should have written all that here. The video with the seals is very enjoyable. I love watching them run around on the beach. I have never seen them do that until now!

Also the other video of Isaac and Eliana singing at the concert is cute. So enjoy them both!

Since last post I have also been to a wedding but will post photos next time. I am also supposed to be doing a couple of posts in which I have been tagged and I have not forgotten....I will do them....don't worry!!!!

Tomorrow I fly out to Brisbane which is interstate for a concert tomorrow night with my favourite Christian singer, David Phelps. I am hoping to meet him. I will have back stage passes because the support singer is a friend of ours and I am hanging out with them. I will be back on Sunday. I am SO excited so I will have pictures of that too!

Wow, hope I didn't bore you with my post!

Love Charisse