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

Exciting conference/Blanche Alter/FA Australia/medical and family update!

So I haven't updated for a little while. What has been going on with us....how has life progressed?

First of all, Isaac had his bloods taken to check his clotting, CBC and red blood cell formation in his marrow. Everything came back as TOTALLY and PERFECTLY NORMAL!!!! Yay!!!! What a relief. To deal with one major health issue in the family is enough for me and I am sure for many people. To think my parents and many of you have needed to deal with FA in 2 or more of your children. I find having FA myself exhausting enough! Haha! I am SO relieved Isaac's tests came back clear. As a mother, you feel so protective of your child.

Isaac had a follow up appointment with his ENT post surgery yesterday morning and he is doing great. His airways are not obstructed anymore. He has HEAPS of air coming out his nostrils when they checked. Wonderful. He is heaps more settled at school and not tired at school anymore except for the norm. We have started to get on top of his bed wetting at night. Now that his brain can start to focus on that we may have a better time of training him. One of my dear friends has lent us a little machine that beeps when Isaac wets at night. You attach it to his undies and it has a cord that runs up the clothing with a speaker on it. When the special cord gets wet in the undies, it starts to beep and boy is it LOUD!! Haha! Isaac was dry all night until the thing went off at 0530 this morning. His undies were rather wet but only a small amount (small coin size) got on his sheet. He woke up and went to the toilet and finished his wee there. So this is the type of brain training I am talking about! We just might get somewhere now that he doesn't have sleep apnoea! Yay!

Isaac also had his flu shot today. I had to be at another appointment so Alan and Isaac went to get a shot each. I hear that Alan and Isaac talked about it heaps and Isaac was all brave until it was his turn. Alan told me he ran under the table and just started screaming! He then started screaming and crying hysterically and Alan couldn't reason with him so he had to pick him up, hold him on his lap and the doctor very quickly did the needle. I feel bad for Isaac. I used to hate having that happen to me. However, if you can't reason with the kid, what do you do? We prepare him and he openly talks about having it and being brave and what he allows. He wanted this doctor so I allowed him to have this doctor so he felt control.....but still it went bad. Shame. If I was there, I am sure I would have cried!

Yesterday I had an MRI under sedation. Routine for making sure there is no spread from the eccrine cancer I had in my head because it can spread. The MRI is also useful for checking the sinus area for cancer and other areas because FA is high risk for head and neck cancer. This scan looks at areas that the scope of an ENT cannot get to. It went well. I dozed with the IV sedation for about 2 thirds of the procedure and then, bing, I was wide awake! The beds that you lie on are quite hard and I get very sore. Where my bone marrow biopsy sites are....I get so sore I can't lay still. When I woke I was really sore and the microphone wasn't working when I tried to tell them so. I asked for them to get me out! They just said, we have to repeat that part of the scan because you are moving...from their mic. So I needed to show them that I had to talk to them and moved again. I had to move my legs! The pain was getting unbearable. Then they opened me up and said they were putting dye in my IV and the anaesthetist said he would give me more IV sedation. I was glad for that and made it through the rest of the scan. It is just over an hour long! I can ring for the results already but have decided to wait until I see the doctor in 2 weeks. I am not desperate for them. I get nervous waiting but I have so much on my plate right now. I need to focus on having all these procedures without getting emotional over results. Sometimes that is how I need to focus.

I had a dermatology appointment today. He looked at my scar on my head and thinks that the issue of the sore scar is to do with a stitch being stuck under there. For now, we will leave it. He doesn't think it is the cancer coming back. I have another small dermatitis lesion on the other side of my scalp I was worried about. He said it doesn't look nasty but he wants to biopsy it because we have learnt from the other one. We want to rule out no nasty cancers. This lesion thingy seems to be around the hair follicle. Although, it looks like some inflammation or dermatitis, we are going to rule it out. For one month, I will treat it with cream and then if it is not responding to that we will biopsy it and just check. So that is good. I am not freaking about that right now. I am comfortable with our plan.

So on the 11th June I have this lump cut out in the girly area.....ouch! Hopefully it is just an inflammatory granuloma and nothing nasty. Whatever it is, it is getting bigger and more sore and bleeding on and off! I want it out! I don't trust FA with anything strange!

I am still waiting to hear back from my haematologist to organise my date for the bone marrow biopsy! It used to be SO easy to do all this. Since I changed doctors 3 or 4 years ago to the adult one, it feels like I am forever chasing him down! It is frustrating! I need IVIG infusion, the surgery and the biopsy to be in that week because I have 2 weeks off and then I am back at work!

I finally got a letter from the pyschologist I am supposed to see for being taken through the transplant unit for emotional healing. I will see her on the 5th June. This next Friday. It is just to sit and chat with her at first, I believe. So that is now getting done.

Alan still has not got a new job. For anyone who missed all that, Alan was made redundant at work. He has now been at home for 2 weeks and has 2 promising job interviews coming up. Both will probably be next week. Please pray he will get it. We have been REALLY tight. In fact, some thing we just cannot afford and have needed to go to the bank to talk about things to help us right now. Not borrowing money but how to manage everything since the job change. Our house has not sold yet.....and we hope it will soon!

I have been working practically once a week. I just don't seem to manage more than that. I am exhausted! I will work overtime on that shift, but I don't like to do more than one a week. I certainly can't do two in a row. However, this money has been a life savour! I don't always work once a week. I am making sure I have these shifts at the moment. When I feel exhausted or tired, I still try and do the shift. I am feeling a little worn out but have enjoyed nursing more frequently and in the same area, theater recovery. I have 2 weeks off for procedures and surgeries and then I am booked back on again.

Mum and dad will be back from Africa on the 5th June. I am looking forward to seeing them.

Thank you to friends and family who have been a help and are a help while we get through this challenging time with finance and lack of job. We greatly appreciate all the support.

This next week we also have the Australian/New Zealand Haematology/Oncology conference here in Adelaide this year! Guess what???? Fanconi Anaemia Australia managed to get a grant to attend the conference and have a booth! YES!!!! FARF have sent over the FA Handbooks to give out to every medical person attending the conference. Our grant covered getting leaflets and posters and information together on FA to give to the doctors, nurses and social workers. OH and guess what else???? Blanche Alter is one of the key international speakers at this conference! Yes, that's right and we are VERY excited to be involved as Fanconi Anaemia Australia! Alan and I will be attending. Alan more than me......it goes for 3 whole days :-) On Thursday night we have the welcome, meet and greet from 6pm to 7.30pm. Alan and I will be in uniform and wandering around the doctors, introducing ourselves, making FA Australia more known to them and the disease. This is our intention. The conference will start that morning and run through to Saturday. This is a huge break for us here. We feel like we will have the chance to make a difference! A chance to help with education and awareness in regards to FA and also to the FA Australia group. They will know that we are here! All the FA handbooks arrives in the post the other week. All together it was 90kgs of books! Haha! It feels good to be doing this!!! Please pray it goes well!

So that is my exciting news.
Well, talk to you all soon!
Love Charisse