Successful Conference and Bone marrow Biopsy

Australian/New Zealand Paediatric Haematology/Oncology Scientific Meeting

Charisse, Dr Blanche Alter (from the USA), Alan in the Fanconi Anaemia Australia Booth at the conference.

Jordan, a Fanconi Anaemia Australia Volunteer, showing someone the New FA Handbook
Our Fanconi Anaemia Australia Camp shirts come in various colours!!! Like this nice blue?

Alan and I dressed in our cool uniform inside our booth. Notice the Fanconi Anaemia Australia posters around the booth, infront of the booth and also, the stand on the left containing FARF family newsletters, FA Couriers, FA Australia information sheets on FA and our camps as well as donation forms :-)

Our Booth!

Hello People,

well the conference was successful! We had an Fanconi Anaemia Australia Booth there and were directly across from the Leukaemia Foundation booth. As you can imagine there were lots of exhibitioners who deal with medications, chemo, nursing pumps, charities....all there with their booths. All trying to speak with the doctors and nurses etc. All trying to raise awareness of their products (if it is drug related and so on).

So we had a booth with posters of Fanconi Anaemia Australia. We had some of FARF's family newsletters and FA Courier. They were there for people to freely take. We had small fliers presenting our Fanconi Anaemia Australia Camp. We had FA information leaflets, free new FA handbooks for doctors and medical staff. We had donation facilities. We had the lot :-) It looked so good. Refer to the pictures above :-)

We were so honoured to have Dr Blanche Alter from the NIH in the United States! She plays a key role in Fanconi Anaemia research and is quite knowledgeable of the disease. While FA is still a mystery to most doctors, she is making such a great and decent effort to understand the disease and better treatment regimes are being brough in because of it. She was impressed with out booth and provided a lot of encouragement. She gave us some ideas as well in regards to communication with doctors and how to help the FA community more. We are open to learn and really appreciated her spending some time with us.

She asked me how I was going and said that she remembered me well from Camp Sunshine because of my beautiful singing! Awww.....thanks Dr Blanche Alter. That was an amazing compliment! We had a little chat about how my bone marrow is going. She was quite helpful. Later, when I wasn't there, Alan tells me that she and him had a good discussion about my health and that Blanche was very understanding and she suggested a few things which I will definitely think about.

We talked a lot with the head of haem/oncol at the women's and children's hospital. We actually deal with him a lot in regards to FA Australia and patients. He came and spoke at our camp. He introduced us to other haematologists/oncologists one which said, "Charisse Howard-Jones! I know that name anywhere! You're a legend!!! ---------- (a name) talks about you all the time!". I was honoured....hehe. I had 2 nurses also walk up to me from interstate and say how they would recognise my face anywhere. It was on the FA Australia website and it dawned on them that I was actually affected by FA. I was quite honoured then as well.

I ran into my old paediatric haematologist/oncologist. I didn't expect to. If you remember, I had to change to an adult haem/oncol because he left to fly overseas and I felt lost. It was SO nice to see him again and while I felt a bit nervous because he knows a lot about me and I hadn't seen him for a while, the conversation was pleasant and it was really nice to see him. I stand by the fact that not only is he a really good doctor, but he is a very nice person and extremely caring. I would refer many FA patients to him if I could.

So our objectives were to hand out the new FA handbooks to doctors and other medical staff, hand out leaflets about FA, make awareness of the charity Fanconi Anaemia Australia and the fact that we have a camp and make new contacts with new doctors. We acheived these objectives and a whole lot more. We found the whole thing very successful and an incredible experience.

As for news on the home front......hehe. I still have my gynae surgery this Thursday and my bone marrow biopsy is now booked for the 16th June. I am going to call tomorrow to see, if by some chance, they can throw in the bone marrow biopsy with my gynae surgery on Thursday. The Friday is IVIG infusion. A busy week. At least it is all getting over and done with. I will ask about my MRI results on Friday.

I have been working every week but I now feel exhausted. I have a head cold. That isn't helping. It has been a bit stressful as we have been under a lot of pressure financially since Alan's job was made redundant. We really need a breakthrough people. We need Alan to get a job. He has an interview this Wednesday with a job he would love. Please pray he will get it. We seriously need this. If he doesn't get a job soon and we don't recover from this blow while he has been down, there are some serious decisions that need to be made and I, honestly, am finding that very emotional on top of what I already have to deal with. I hate finance.....Money issues are always such a pressure!!!! No one should ever take money for granted!

Ok, I hope you enjoyed my update. I will hopefully update again soon after my surgery.
Lots of love,
Charisse