June 2005 entries

Saturday, June 25, 2005 2:58 AM CDT

Hi Everyone,

I really appreciate everyone's thoughts and prayers. I have really had a rough time emotionally lately. I have found it very hard to get through the day.

For those who know me.....you would know that I am a happy, jolly person who loves to live life and loves my family and loves Jesus.

But I do get down very easily...even though my love of life and Jesus doesn't disappear, it is hard to see the picture clearly and hard to talk, function and so on.

Please for those who are reading this and haven't seen the journal entry before this....please look it up because it will tell you a lot of what I have been struggling with.

Besides struggling....today I laughed the most I have laughed in a while. I talked to Teresa in America today....and of course I am in Australia so it was a big hit for me and I was laughing the whole day afterwards. Teresa, thanks for the "experience" of talking with you - I loved it! So I have had a good, laughing da today....it is better than tears.

Well, Isaac is crying so I have to go.

Bless you and I am thinking of you all. Donna and Nicholas - whole family...you are in my prayers.

Love Charisse


--------------------------------------------------------------------------------

Thursday, June 23, 2005 7:59 AM CDT

Hi all,
This is Alan (Charisse's husband). Charisse has asked me to post this journal to update you on some things that Charisse is working through at the moment...

From time to time Charisse struggles with feeling depressed and generally worthless. As you would know she also struggles with anxiety and finds herself quite upset about things that happen in her life. Unfortunately, this is one of those times.

Charisse is feeling very depressed at the moment--crying a lot and just feeling overwhelmed with "things" that are troubling her.

Please keep her in your prayers, as one of her few reassurances in times like these is the knowledge that all of you are supporting & praying for her.

Charisse will write again soon when she's feeling a little more in control, and her head clears.

Thanks again for your support,

Sincerely, Alan



--------------------------------------------------------------------------------

Saturday, June 18, 2005 6:13 AM CDT

Hello People,

how are we all? I have just gotten home from hospital after spending a night following my IgG infusion. The reaction to the infusion was a little worse than usual and I would say that it is because I have only had my dosages 3 1/2 weeks apart as opposed to 6 weeks apart. So I am really itchy and I have been really sore. The nurses were good this time. They managed to get on top of my pain rather than leave it until the middle of the night.

The hospital was so busy with admissions this weekend that I ended up being on the maternity ward rather than haematology. That was weird but really nice. The maternity ward of a private hospital is luxury and my room was like a really nice hotel! I had my own DVD player and my husband had a fold out couch to sleep on. It was 5 star service!! Very different to haematology ward - although that ward is nice too.

I had been very anxious about this visit to the hospital because I was going to hear about the progress to do with "may be losing my doctor" issue.

Man, I had anxiety! My doctor took both Alan and I in to talk to us and my mind and body snapped into "avoidance" mode. it is often very hard to get out of this phase once you have entered it. It is a high anxiety phase that leaves me unable to make eye contact, pale, dry, collapse mode, and visual disturbances. Once you start with the visual disturbances you know you have high anxiety....and I had all of that. I couldn't say a word to my doctor while he spoke to us....I didn't know how to speak or what to say and I felt out of control and awful!!

Unfortunately, I got the news I didn't want and that was that my doctor has had to shut down his private practice due to hospital pressure and take up full time with the Women's and Children's hospital. He has been able to sneak me into the women's and children's hospital as a patient, however, they will not allow him to admit me under any circumstances because i am over the age of 18. So, he can't do my infusions....I have to find a new doctor for that. I am definately anxious about that. However, this new doctor is apparently only around to supervise my infusions at the private hospital and my doctor will be my primary carer at the childrens. I was diagnosed at the childrens and my brother died there so it will be hard going back to the same place for appointments again.

I asked my doctor about my chromosome results for my bone marrow biopsy and they are not in yet. I can't believe it. It has been 3 weeks now and I don't know how long I can wait. The laboratory is supposedly lagging behind in its reports and stuff. So when he rang for the results, they were not ready yet. So...I keep waiting for these stupid results. I trust God that they are ok since the first part of the test was fine.....the marrow slide.

Well, thank you for your prayers - those of you who have been praying for me. I appreciate it. Thank you for your friendship. Please remember and pray for the sick children undergoing treatment and the adults as well. Please pray for Maria Godwin as she fights cancer and has chemo.

Thank you Prayer Bears once again for your faithfulness and love.

Thank you Teresa for your continual support to me as a friend.

Bless you all and have a good day or night.

Love Charisse


--------------------------------------------------------------------------------

Wednesday, June 15, 2005 3:20 AM CDT

Evening everyone,

I have been well since my last update. I STILL haven't got my other half of the bone marrow results - the chromosome results but I am sure to get them on Friday because I actually have to see my doctor on Friday.

This Friday I am being admitted into hospital for my 6 weekly IgG infusion, except that it has only been 3 1/2 weeks since my last one. Since we are going to camp Sunshine in Ausgust my infusions are being squashed together so that I will be well and have high IgG levels. Once I get back I will have one more infusion and then go back to 6 weekly again.

I have gotten used to not having my lump on my tongue - hehe....my tongue feels much better now and it is no longer sore.

I have been pretty anxious the last couple of weeks and I having been dealing well with that but now I feel like I am really tired and stressed. I am always stressed when waiting for bone marrow results - however the first results are good - and then I found out that I may have to get another doctor because of some legal thing with the hospital. The hospital is making it difficult for my doctor to keep me. I see him privately and am admitted at a private hospital. My doctor is a haematologist/oncologist paediatrician. Yes, I am an adult seeing a kid's doctor and the Women's and Children's hospital doesn't allow doctors to take children on after they are 18 years old. i am 27 years old and so I see him privately. Over the last 3 years since my original paediatrician who knew FA retired I was sent to adult doctors and they really didn't know much about FA. It stressed me out so much...they gave me 2 leukemia scares only to tell me it was a mistake after a while. They did not know FA.....so I finally found this doctor and now the Women's and children's hospital are demanding he pick up hours at the hospital and drop all his adult patients......it is all a mess. This makes me heaps anxious because I can't go back to people who don't know FA....I had a terrible time and I need to stay with this doctor so I am stable emotionally and get the right info on FA. My doctor doesn't want to lose me either so he is fighting for the right to keep me even if his private practice is lost....so I can go to the children's hospital. The only thing I find difficult with that is the fact that my brother, Shannon with FA, died there and I will have to face huge grief and anxiety issues if I end up back at the childrens. I just pray and try and trust Jesus that I will still have this doctor.

Sorry to write all that. And it is amazing what makes me anxious. I have had such bad experiences with doctors in many, many ways....sometimes they intimidate me and scare me and when I get one that is good....I don't want to let go!! You know I have had trouble breathing this past week because of all the anxiety! I have also had such a sore chest - all anxiety...so I hope this is all dealt with quickly.

Also, my pyschologist wants to do a therapy that involves total recall of a traumatic event. She wants to do this with the grief issue about my brother - take me back to the room, his death...she said that it would be hard but that afterwards my brain will be able to deal better with the grief. I have also found this a bit threatening. I don't know if I am ready to do this. By the way, it is not anything weird....I have read up on the procedure...completely medical. I have tried not to get upset about all this...since I do have a choice to do it or not.

Hmm....whenever I get threatened I use "avoidance" techniques! Hehe...it happens regularly....so I haven't seen my pyschologist for 5 weeks and I said to Alan last night when I was having an anxiety attack that I really need to see her again. Because of the doctor issue, I can feel myself cancelling the infusion...but I can't do that...so I am making sure Alan pushes me to go.....and Alan is ringing the doctor to let him know that I am very stressed.

Besides all that.....I am well and not sick, Isaac is well and Alan is well.

Isaac and I went to kindergym today and Isaac really had a lot of fun.

We have had heaps of people from church donating money to help us pay for part of the camp sunshine trip that we are struggling with. They have been very generous and we praise the Lord for that.

God is so Good all the time. Amongst eveything He remains true and faithful. I often enjoy reading Ps 91 in the Bible because it encourages me so much.

Please remember and pray for all the children who are undergoing treatment and recovering.

Please also remember the adults who are fighting the good fight. Maria Godwin needs our prayers as she starts chemotherapy this week at the hospital.

Thank you once again to the Prayer Bears who have been a constant encouragment and support to me throughout the last couple of weeks.
http://groups.yahoo.com/group/theprayerbears/

Thanks also to my dear friend Teresa Clifton who remains such a good support to me. Please remember little Emma Clifton as she also has Fanconi Anaemia. She is a beautiful little girl. www.caringbridge.com/or/emmarose



I hope you all have a good rest of the week.

Lots of love
Charisse



--------------------------------------------------------------------------------

Wednesday, June 8, 2005 7:32 AM CDT

Hello Everyone!!

I have had a good week so far. Praise God!!!! I got half of my bone marrow biopsy results back and they show no abnormal cells in my marrow. No pre-leukemia, no further marrow failure....my marrow is in good shape. I haven't got the cytogenetics part of the test back which will tell me about any chromosome breakages or changes. Since the first part of the test is good, the second half should be good as well. If there were any serious changes in chromosomes it would also show in the marrow slide which is fine. I am relieved. But I will be more relieved to see the whole test is fine. Praise the Lord this is good.

HA!! I also went to the oral surgeon on Tuesday (yesterday). I had a lump on my tongue and he was supposed to assess it, but he ended up taking it out that same day. HA!! You know about my anxiety. well, when he said, "let's do it now!!" I freiked!! I did so well though. I did have a panic attack. After he said we were going to take it out my whole body started to shake violently. HA!! I have to laugh about it now. I went white in the face and my heart was racing, my body shaking uncontrollably and I wanted to cry. In fact, I was seconds away from crying but I managed to hold it in. I found myself apologising and apologising for my panic attack. I didn't have Alan, my husband with me and my mum was down stairs with my toddler, Isaac, who was sound asleep. So I said that I would have it done.. hehe...the nurse held my hand and I had the panic attack, he cut it out and that was it. He sent it off to be tested but he said that it is likely that it is just overgrown scar tissue on my tongue - not cancerous at all. So that is good that it is nothing serious!!

Now I have a sore tongue and I miss my lump...I am used to actually biting it often and it is not there anymore....HA!

It was a good day today. I took Isaac to kindergym and then we went out to lunch with my new friend from kindergym. When I got home, Isaac went to bed for 3 hours so I had some time to do what I needed to do - and have a sleep.

I am heaps tired tonight. Next Friday I go back into hospital for my next IgG infusion. I will stay overnight because I suffer from a conversion reaction - all my muscles and body get really sore and they give me medication to counteract it all.

In August Alan, Isaac and I are all planning on going to camp sunshine.....my first time...we are so excited!!

Anway, it is that time of the night again. Time to have a bath and off to bed.

Hope everyone is having a lovely day.

Lots of love and blessing,

Charisse


--------------------------------------------------------------------------------

Sunday, June 5, 2005 6:44 AM CDT

Hello All,

Nothing much is going on with me. I had an annual bone marrow biopsy done 2 weeks ago and am still waiting on the results. i am praying that they are good, clear results without any abnormalities. However, as per usual, the waiting does cause some anxiety for me.

For those of you who do not know. I suffer from post-traumatic stress syndrome, anxiety syndrome and panic attacks. I have also recently beaten post natal depression which came on after the birth of my beautiful son who was born at 27 weeks gestation in the year 2002. He is now 2 1/2 years old and extremely healthy. The doctors told me that it was very unlikely that I could conceive due to Fanconi Anaemia. However, I sure showed them when I fell pregnant within a month and successfully had a baby boy. I praise God for Isaac every day and for the fact that I can have a productive life as a mother and a wife despite the disease of Fanconi Anaemia.

I am a Registered Nurse and work in Recovery at the hospital down the road. I live in Adelaide, South Australia. I love my work and get such a joy out of caring for other people. And having been a patient a lot, it helps my understanding as an RN when caring for my patients.

I also had a brother, Shannon, who had Fanconi anaemia and he died after a bone marrow transplant in 1994. The BMT was completely successful. It was tragic that he died as the result of a medical error. That was very sad and still is. I miss Shannon every day and love him heaps. We used to do so much together - like bone marrow biopsies and normal child play. He and I were so close to one another. Although I miss him greatly, I find it amazing the events that can be used to grow you as a person and grow your realtionship with the Lord. I never grieved properly after Shannon died and after Isaac was born, all the beans spilled out and so I am currently having sessions with a psychologist to work through the grief I never admitted to having. It has been a long journey....coping with FA and the loss of my brother, as well as a premie baby.

I also see the psychologist for the post-traumatic stress syndrome and anxiety and panic attacks and I am pleased to say that I am managing everything so much better these days. I used to collapse from anxiety and now that is only once in a while. I still deal with major anxiety at times, but I am learning to control it. I have bad months and good months.

However, besides all that anxiety, if you were to meet me, you would have no idea that I cope with those things. I am a very happy, hyperactive person...hehe....so I am told...and I love Jesus...I love life....I have a great life...I love my family....everything is so special in my life.

I had the pleasure of joining up with the Prayer Bears group only 2 days ago and already I am touched by their will and desire to pray for sick children and adults. i have been so encouraged by that group and will love being a part of it. The website for Prayer Bears is: http://www.groups.yahoo.com/group/theprayerbears/

I have also been a part of the FA adults group and fanconi group and they have helped me with anxiety associated with FA. It has been the first time ever that I have had contact with other people who have Fanconi Anemia (besides my brother). It has been a really good support to me in my experiences with FA. So thank you to everyone who has helped me. You probably don't even realise how precious the groups are to me.

Anyway, this site is only new so it doesn't have many features yet. So I will try and make it more interesting.

Bless you all,
Good night,

Love Charisse

My Story

My name is Charisse Howard-Jones. I am 29 years old and I was diagnosed with Fanconi Anaemia at the age of 7 years old. Fanconi Anaemia is a rare, autosomal, recessive disorder (both parents must have the gene). It is most often characterised by bone marrow failure - meaning that the marrow is unable to make the right amount of platelets, Red blood cells and White blood cells. Fanconi Anaemia is also strongly associated with the onset of leukemia and other types of cancers like head and neck cancer as well as a range of birth defects. I have annual bone marrow biopsies to watch out for symptoms of further bone marrow failure and the onset of leukemia.

I was diagnosed after the initial onset of bone marrow failure. First symptom noticed to investigate my health was instantaneous bleeding and bruising due to inadequate platelet count. My bone marrow failure was stabalised through the administration of the steriods Oxymethalone and Prednisolone which helped stimulate my marrow and therefore produce adequate blood cells.

I am currently married and have a beautiful 4 1/2 year old son named Isaac. I am no longer on the oxymethalone as I ceased it due to its affects that it can have on a child in the womb. My blood counts are stable and I have been relatively well all through my life. I do have immunoglobulin infusions (IgG) every 6 weeks to maintain my IgG levels so that I remain well. I suffer from low immunoglobulin G levels and as a result, catch colds easily. However, with the infusions, I am as fit as a fiddle and have only started them about 8 months ago.

I am a born-again Christian and love Jesus with all my heart. Even though life has been tough at times, I love it to the fullest. I have a great family - a wonderful husband and son. Hope you enjoy my new website!!