Lost His First Tooth!

Hello All,
silly computer! Ahhhh, I can't get this photo to move down! Usually I can write on top of this photo but every time I try, it deletes it. I just don't understand.....oh well.

On Monday, yesterday, Isaac lost his very first baby tooth! What a big boy! I was wondering when it was going to start. Isaac is 6 1/2 years old. We had no idea that his tooth was even wiggly! It was one of the bottom, front teeth. Isaac says the other one is slightly wiggly as well. He said that it just fell out while he was on the mat at school! Hehe.

He was happy to receive his 50 cents for his tooth today. Isaac actually knows the tooth fairy is not real. However, it is still exciting for him to get money. He put his tooth in a glass with water and had the 50 cent piece in there this morning and I had taken his tooth and put it somewhere safe. I couldn't bear to throw it right now.....my baby's tooth. He is gonna look so grown up once those adult teeth come through! Above there is a photo of him with his tooth gone. What a sweetie!

Anyway, just wanted to update on that briefy......something other than medical :-)

Below: Isaac wanted me to take a photo of him on the couch, covered by this blanket that nanna and others made for him. He wanted it as his background. It is lovely, isn't it?

Can you see how big my boy is getting?? Anyway, I need to get to bed! I am proud of Isaac.





Love Charisse

CT Scan and Oncologist appointment

Hello People,

I had the CT scan on Friday last week and I got the results today. The good news is that the CT scan shows no inflammation in the lymph nodes or glands in the abdomen or the groin. So no evidence that the cancer has spread. Whoo Hoo!!!

However, I thought I would feel estatic after hearing this news. I was incredibly relieved but I still feel SO down. The oncologist was extremely nice. We had a good discussion. He had read the appropriate parts of the FA handbook and had my report from the cancer that had been removed.

He told me that the cancer was 1.2 mm deep which I knew. Apparently there is not really a chance of the cancer microscopicly breaking off into the lymph nodes when it is only 1mm deep. Once it gets over that, there is an approx 7% chance that the cancer has mircroscopicly broken off and entered the lymph nodes even if the CT scan is clear. So I suppose this is why I feel so down. It is such a SMALL chance but apparently the usual is to remove the groin lymph nodes as a precautionary measure even if there is no evidence with the Scan or on examination.

However, this can cause problems in the future, especially for a young woman. Swelling of the legs and groin, drainage problems and problems with dealing with infection. There is the risk of infection when having them removed and bleeding etc.

Of course, for someone like me who has not had a transplant and does have low neutrophils and platelets, it can complicate things. In the future, with low immunity and the groin lymph nodes gone, it can cause problems for infection because I already have low immunity.

They can highlight the lymph node that the area where the cancer was drains to first and only remove that one. Of course, you could have a false positive and end up removing perfectly good lymph nodes with no cancer and then still have complications later one. *sigh*

To be honest, I am feeling rather overwhelmed right now by all of FA. Really overwhelmed. I feel quite a bit depressed and I really want to cry.

Another option, because of the risks and complications for me, is to not remove the lymph nodes at all because the risk factor of spreading is only 7% and just to monitor the lymph nodes which is what I am doing for the head cancer I had out last year.

Obviously surveillance for vulva cancer now would be 3 monthly for me. Examination of lymph nodes and the vulva +/- vulvoscopy and an ultrasound of the groin lymph nodes. This is an option I am looking at.

Lymph node removal can be rather controversal because they can remove completely healthy lymph nodes with no cancer and cause further problems by doing so......because there is no evidence but the theoretical 7% of possible spreading due to the 1.2mm deep cancer rather than 1 mm.

Anyway, I am not fond of causing myself more problems. I am also not fond of having the cancer spread. If it was more like 30% or 50% or 90%, I would obviously have to be more drastic involving the lymph nodes but with 7% I am not too sure and I don't want to make the wrong decision!!!!! Decisions are CRAZY!!!

I have a gut feeling that it is not right to remove the lymph nodes for me and I should just have agressive surveillance like what I am doing with my head........although my surveillance with the gynae will be more agressive as the ultrasounds would also be done 3 monthly. My head MRI's are done annually....or was it 6 monthly....boy I can't remember.

I have given the oncologist the email of the gynae/oncol at the NIH in the States and told him I want us to work out what is best with their opinion in regards to an FA patient. I will also talk to her myself. They would see more FA patients.

As for the area that was excised. They got the full cancer out. However, there are pre-cancerous cells leading right out to the margin. So the margins were not clear and need to be. So I have to go back to surgery, have a vulvoscopy done to see if there is more dysplasia in other areas and how far it goes around the area excised already. They will remove the pre-cancerous cells left there and if there are other cells that are highlighted in different spots, they will biopsy those and we will wait for those results before cutting more *sigh* This could be rather extensive surgery. I am praying that it won't be *sigh*.

A tentative booking for surgery is the 24th July.

I have't got any bone marrow results back yet.

Anyway, I do praise God that the scans came back negative though. If they had come back positive I would be in more trouble! So even though I still feel overwhelmed and down, I have to admit, that is wonderful news and I am so grateful.

I think another part of me feels so down because if I had cut this out earlier as I thought I should...and acted on my feeling....then the cancer wouldn't be over 1mm deep and I wouldn't even have to deal with this lymph nodes stuff! *sigh*

Thanks to all your support. Thanks for praying, thanks for being there for me and thanks for your encouragement!!!

Keep praying!
Lots of love,
Charisse

CT Scan booked

Hi All,

my CT scan to check my abdomen and groin area is booked for Friday afternoon this week. I spoke to my head and neck oncologist to get some background on everything since I haven't yet met the gynae oncol and I just needed to talk to someone I trusted. He was disturbed about the news. He said that the CT scan will be looking at the lymph nodes and glands in the abdomen and groin. If the abdomen shows any inflammation or swelling then it is serious business. However, if that is fine and the groin area shows swelling or inflammation, I mustn't be too upset because it could be the drainage from the surgery done recently. Therefore, they would often repeat with an ultrasound to see if it really is cancer or just swelling from the surgery. He said that the gynae oncol I am referred to is the best and was very happy to hear I would be seeing him. Him....that alone makes me nervous. I have never been good with men.....not when it comes to private stuff *sigh*

Of course, it will be looked into whether more needs to be excised to make sure there are no pre-cancerous lesions left. On top of that I am wondering whether a vulvoscopy would be good to identify any other cells rather than just guessing. I am worried there is more left because I have been uncomfortable in other areas that are not lesions and now I am panicked. At the moment, I know the extreme discomfort is from surgery. We have sent the results to Blanche Alter. I refuse to miss anything and have asked them about the vulcvoscopy as well. When I see this gynae oncologist next week I am going to be prepared. Alan is also giving him a call to talk to him about Fanconi Anaemia. I have NO idea if he has even heard of the disease. He needs his own book and to understand that we are very actively involved in my care and decisions because it is so rare and needs special attention.

My bone marrow biopsy went well yesterday. I am quite sore. It seems the more I have done, the worse the pain gets each time. I have reached number 29 or 30. I need to re-count! Crazy! I asked for a pressure bandage afterwards because I didn't want a bone bruise. I have had one of them before when my platelets were higher and it was not nice. So now that they are lower, I want to avoid it. I spent all day sitting or lying on a towel.

Anyway, I need to get going. I have a haematology appointment this afternoon booked from before. My haem doesn't know of my new news yet, unless he has already received a letter but sometimes letters can be slow.

Thanks for all your support and prayers. I greatly appreciate them and need them. Thanks for your encouragement.
Love Charisse

Pathology Results

Hello All,

I am going to get straight to it. The pathology on the vulva lesion that was removed on Thursday came back as cancer. Squamous Cell Carcinoma, a typical FA cancer. They got all of it, however, pathology shows that the pre-cancerous cells led right to where they excised so more will probably have to be taken out to stop that from turning.

While only a spot of the lesion was cancerous and the rest pre-cancerous, the depth was something like 1.2mm and that is deep enough to concern them that it could have already spread into the abdominal lymph nodes and glands. I am praying this has not happened. Tomorrow we will organise a CT scan of the abdomen and lymph nodes to see if there is any spread. I have been told it is possible that I will need my lymph nodes biopsied and may be removed if there is a problem. I am booked in to see a gynaecological oncologist because this now stretches beyond the expertise of my current gynae. I am booked in to see him a week tomorrow....the 24th of June.

Yes, I feel shocked and very shaken. I was told that this lump looked like an inflammatory granuloma and not anything nasty, although we were cutting the whole thing out anyway. When I had a biopsy done on it last year it came back clear of pre-cancerous or cancerous cells. It is horrible how quickly FA can speed things along and I kick myself for not just removing the whole thing earlier. I hope nothing has spread.

When the doctor rang, my heart started to boom so loudly and my hands started to shake and for 45 mins I could not stop shaking....legs and arms and body in general. It doesn't matter how bad you know FA can be. It doesn't matter how many times I am told bad news, I never seem to get used to it and not react. This has greatly upset me and I don't know what else to do but pray and try to survive.

My surgery to remove the lesion went well. A bit of swelling even now. No bruising and no bleeding. The actual day was full of drama but the actual surgery good.

I had my infusion on Friday. I managed to convince the other hospital to keep my IV line in for infusion at another hospital. Infusion went smoothly. I gave another haematologist the new FA handbook and he asked for my autograph, full name and date! Hehe

Tomorrow is my bone marrow biopsy at 1130. I am overwhelmed by cancer issues. I have been fighting for years against pre-leukaemic changes with prayer. I feel overwhelmed in light of the new news. So please pray that my marrow will not have anything bad....I would like for it to be totally normal.

Ok, that is all I have to say.
Love you,
Charisse

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