Random Stuff/Photos/Medical update

Hello All,
It has been a little while since I updated. As per usual, medical dramas are always exciting. My wound from the operation to remove the vulval cancer is taking forever to heal! I have seen the surgeon every Friday. First, the swelling was just crazy that there was a lot of pain and fluid coming out. Then the stitches were pulled out as a result of the swelling so the wound started to gape a bit but not too badly. Then some weird blisters appeared along with an excess of granulation tissue and this provided me with horrible pain. I had to up my pain relief. Then, suddenly it looked infected a week later with more pain again. Off to the surgeon and so put on antibiotics. At first they considered taking me back into surgery to clean the wound up which is still gaping a bit from the stitches being pulled from the swelling. However, my blood counts came back as ALL low! Crazy! Even counts that are usually well within range were quite under the range which made me panic and have many emotional moments. Haemaglobin is never low and was low and the level that shows how stressed your marrow is, is usually in range and is way up! So I think it is safe to say my body and marrow is under a bit of stress with trying to heal this wound! So they didn't want to take me into surgery with counts like this. We went with the antibiotic course and salt baths and HEAPS of rest *sigh* I am SICK of rest. I haven't driven in at least 6 weeks. I have been very teary as well. The surgeon also thinks I am having a reaction to the stitches that are left in. However, it is too painful to snip them and they don't want to touch down there with my counts. So we are waiting. I just finished the antibiotics and I think it is feeling a bit better but I need to give it more time. I now have local anaesthetic that I can put on to help with the pain as well as the oral pain relief.

Other medical updates. I went to the ENT to have my mouth checked. After the op, I was quite stressed and tired and got many ulcers in my mouth. They have started to clear up but we are keeping an eye on it all. I also have a huge ulcer on my tongue right now and some white areas which have developed while I have been stressed. He also discovered a strange lump inside my right ear. He thinks it needs to be surgically taken off and could be a cyst or a basal cell carcinoma. These cancers are easy to remove if caught early. They are not known for spreading. Boy, Australian sun is a killer. I must remember not to forget my ears and put sunscreen on the. Honestly, I cover myself in sunscreen and wear a hat. From all these cancers (ones on the head), you would think I deliberately expose myself to the sun. Believe me, I don't! I hope it is JUST a cyst. I have to see the ENT again in 3 weeks to see if this ulcer and white spots on my tongue, go away. If not, biopsies and this lump will be taken off together in surgery.

I saw a pyschologist yesterday. It was good. I have been teary every day since the operation to take out the vulval cancer. I have found this rather traumatic and am still struggling in the recovery period. I had a good chat with this pyschologist. She deals with patients going into transplant and who have experienced cancer. I will be working through some more issues that have come up as a result of my brother's death in 1994 and doing some visual exposure in the transplant unit and haematology wards to help my anxiety. We will be working through a LOT! I haven't written all that here though. I will see this lady every 2 to 3 weeks. I am aware that this could be challenging but am eager. I also feel like I need the general emotional support right now.

Enough of that though. I wanted to share some fun photos with you. It has been winter here but we had a few days of warmer weather and sunshine. I thought I would put some photos up of Isaac and I in the backyard. Remember Bella, Isaac's kitten? She is 6 months now and just got desexed and is allowed to explore the backyard with us around. The other cat you will see is our 6 year old cat, Matilda :-) Below is Isaac and Bella.
Below is a picture of myself enjoying the sunshine, watching Isaac and Alan working in the yard. See......I DO wear a hat....and I DO have plenty of sunscreen on...even on my hands!

Matilda on the left, Bella on the right :-)

6 weeks ago, before my surgery and in the school holidays, Alan, Isaac and I went to a place called Victor Habour. You can travel over to an island called Granite Island on a carriage pulled by a draft horse. There are fairy penguins over there. Beautiful scenery. We went over and stayed for the night tour so we could see the penguins. It was a great family day.

This is us leaving the main land, going over the long bridge, in the carriage being pulled by the horse.

I took a picture of the water while driving. It was very peaceful :-)

Isaac enoying the ride and the ocean scenery :-)

Scenery. Is that the main land? Hehe....

The rocks on the other side. Getting closer....

Here we are on the island and we had enough time to walk around the whole island before dark. It was cold so we had our scarves, beanies, gloves asnd jackets on. We started by walking up all these stairs to the top of the side of the island and then followed dirt tracks from there.

Haha! My hair looks crazily fluffy and out there! It was cold and windy but beautiful! Isaac and I stopping to pose while climbing.

The view half way up the stairs :-)

I love this rock formation. It looks like a hand! We were walking around the side of the island, safely of course, and saw this. Fascinating!

Walking along small trails. Hold on Isaac. It is a long way to tumble and roll down!

Big boulder down by the water!

Isaac and I on a rock....hehe

Walking around the other side of the island. The sun is going down. Pretty.....

Over half way around now. An old, huge tree........fascinating

Coming back towards the front of the island, close to where the bridge is back to the main land. Pretty.

The bridge we travelled over from the main land, on the carriage pulled by the horse :-)

We walked back over the bridge after the penguine tour. We got the penguine tour on video and didn't have any pictures. I think this photo is nice.

Can you believe it? It is approaching 9.30pm and we still hadn't been to the playground which we promised Isaac could do. It had been a big day of fun and was the school holidays, so we stayed later to allow Isaac a bit of a play. Then we ventured home on our 1.5 to 2 hour trip home. Isaac fell asleep in the car :-)

So that was one outing during the holidays. Another day we went to the Thomas the Tank Engine Fair which was at the Railway Museum. There are also real old steam trains kept there and that was the highlight of Isaac's day. He loves steam trains so here are a few pictures of Isaac hanging out with those huge trains :-)

Isaac pretending to be the engine driver.....hehe

I like this photo. What a cool kid! What a huge steam train!
Some other holiday fun at the local park. Isaac likes to make up a challenge course and daddy (Alan) must do whatever Isaac does....hehe

Plenty of challenges.

Go, Alan, GO!!!!

Happy Isaac!

So there are some updated photos of our family. It is late and I must get into bed. We have FA camp here in Australia in less than 2 weeks. I will get to meet Kelly and Janet Turner from the FA e-group from New Zealand! I am SO excited! It should be fun. Please pray I feel much better with this wound and that my counts have improved. I must go to bed!

Love you all,

Charisse

Recovery will be a lot longer than I thought.......

Hello All,
I thought I would do an update on how I am recovering.
Well, Monday morning last week I woke up groaning in pain! It was SO bad. I wanted to cry and I feared that I had come home to early. I wanted one of those injections so badly. At that point I realised that recovery was gonna take a lot longer than I thought it would.

I felt like I had a tennis ball or more between my legs! Haha.....trying to be discreet and all. We ended up contacting the surgeon because the pain was bad and the swelling quite bad too. She was concerned that I might have a haematoma so she asked me to come in during the next couple of days.

I went in to see her and she checked it all out and agreed that I was more swollen than they would have expected but didn't have any reason for it except that bodies are individual and can respond differently to surgical procedures as we all know too well. I started taking more pain relief for the pain which caused me to forget things during the week but at least I was able to get the pain under control without needing to go back to the hospital. Dr Grant said that there was no haematoma and she was very relieved. I have had some stuff coming out of the wound which is a reddish colour.....as well as other colours and I was concerned about bleeding and my monthly time was winding up and I knew this was coming from the incision which is heaps bigger than the other one. Because my marrow was suppressed from being unwell weeks ago I was concerned that the platelets had dropped again but the surgeon put my mind at ease and said that this "bleeding" was not platelet bleeding but stuff that comes normally when a wound is healing and that people with high platelets have this as well. It is the healing process. So I have not felt as concerned as I was. My nursing mind and experience acknowledges this as well but when it is yourself you feel more concerned.

So I have been doing ice packs, pain relief and I have now started salt baths to help the healing, clean the area, decrease pain and swelling. The swelling gas come down half way but is still quite swollen. It is annoying and I can't wait to be normal. The incisions are stinging and when the pain relief wears off I feel like knives are cutting into me. It is horrible. That is what the C-section felt like when pain relief wore off. I haven't been able to walk around...I have waddled VERY slowly when walking. I seem to be able to speed up a little now but not for long. I have been either lying in bed on my back or sides with a pillow between my legs. I sit on the recliner chair with my egg shells (foam) that my sister has lent me from when she had her babies. It takes me forever to get in the shower in the mornings. For example, it is 12 midday now and I still need to shower. The effort is just so much and it hurts to get ready....but the feeling of being clean is nice. My doctor said that it will be "time" that heals....as we know. She cannot say how long it will be. Just time. So I won't be rushing back to work any time soon. 6 weeks is an average time for big surgical procedures. So that's that.

Other news. I have terrible ulcers in my mouth, by the front, down the bottom, on the left. Terrible!! That started with the stress of the operation. I went to the ENT yesterday for my usual check. He looked and said it was bad. He wants to give it 4 weeks to heal and then see him again. If it is still there, we will biopsy to check......*sigh*.......I hope they heal. We will also do the 6 monthly scope then. I have been reading the new FA handbook with all the details about head and neck cancer and gynae stuff and I am so totally overwhelmed. The ENT felt so bad for me. I know that my doctors are getting a jolt from the last 2 diagnosis......the head cancer last year and the gynae......it is keeping them on their toes but they seem to be reacting emotionally a little as well. I can see they care deeply. The gynae surgeon and her secretary told Alan before my surgery that they were "shaken" by the cancer diagnosis. They had been asking how I was coping with it and when Alan told them I was shaken, she said, "we were both shaken too". Many of the doctors I deal with here in Adelaide don't have FA patients. We are VERY few. I am paving the way. Even the top doctors have never had an FA patient. I am proud to say I am paving the way for other FA adult patients. These doctors are being well educated and trained......hehe.....by me.....and Alan........hehehehe. They are becoming quite diligent. They are now doing the surveillance without me asking and being very good. They are thinking about it. I feel good about my doctors at the moment.

Other news. Isaac is doing well. His teacher rang me on the phone last night and told me how well he is doing with his maths at school now. This was something Isaac was struggling with and I have been "tuitoring" Isaac at home with. We do fun games with his lego as counters. We do sums etc. Isaac has his own black board at home and he likes to play teachers and students. It helps make learning fun. It was encouraging to hear that my tuitoring has been helping him significantly.

Anyway, I need to go and get myself organised. My mum is now here to visit with me.

Bless you all,
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

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

Good Day with Isaac

Hi All....again....hehe,

Isaac had a good day today. He asked for a snack at morning tea time and so I offered him some things and he chose to have some jatz (cracker biscuits). I thought, "this will be interesting" but still gave them to him. He had two at first. I was doing something and he said he was finished. I was SO surprised! No crying, or gagging as he ate these so we got him another 2 with vegemite on them and he ate them too, clearing his throat a little! I was so excited. He then asked for a piece of bread with butter. So we gave him it and I waited with baited breath for the tears and gagging and spitting. A little clearing of the throat but nothing else happened! Yay! He had eaten without a fuss! I had high hopes for lunch time being a success as well :-)

Lunch time approached and he wanted orange soupe (pumpkin) with teddy noodles. So I heated the soup through since we had it yesterday and cooked the teddy noodles and mixed it all together. He ate quite a bit and then said he was full. That usually means he is getting tired feeding himself and because I want him to have a good lunch I offered to help. He ate almost the whole soup and the noodles. He spat up one noodle and gagged a little. But there were no tears...YAY!!!!!!

He had a biscuit for afternoon tea and didn't have many issues...still no tears.

We went to visit Aunty Angela this afternoon and that was fun. Then we went to the hairdresser for Isaac to have a hair cut. It was well overdue! Isaac never likes having his hair cut and always complains prior to the appointment. He used to scream during his hair cut but since starting school last year, he gets a bit pouty (a word???) and sulks a bit but is always very good. Today I was expecting the same. Well he sat there getting his hair cut and he started screaming! I was so surprised! As the scissors came closer he did this high pitched scream/squeal and burst into fresh tears....crying and crying and then screaming again. I apologised to the hair dresser explaining that he had a traumatic week last week and he must be just traumatised. I then tried to coax Isaac through the haircut which was hard with him crying and screaming at intervals! I was telling him that the hairdresser is not hurting him, just cutting his hair like we always do! But when he saw the scissors out the corner of his eye, he would panic and scream and then cry!

I must say that Isaac must be a bit traumatised from what happened last week post tonsillectomy and his recovery! He must be very sensitive right now which is why he has been struggling to recover from it all. It makes me nervous that in a week I have to take him for another blood test. Just seeing the room and knowing what is going to happen freaks him out before they do anything! I know Isaac is a real sensitive kid but what I witnessed today made me feel sad that he was so traumatised last week. I know that when I was a child...and of course I have FA....I had so much stuff happen and felt out of control and traumatised a lot of the time! Poor Isaac.

After the hair cut the man gave him a nice biscuit for doing a "good job", although I don't think Isaac was "well behaved" compared to how he usually is....but he wasn't deliberately being naughty today......I could see the fear in his eyes....shame my poor baby! I told the man he was so nice giving Isaac a biscuit when Isaac screamed and didn't sit still and stuff. The man was not phased by Isaac's outburst which was good. He is a great hair dresser and is one of the people who does Isaac specifically. He reassured me that Isaac was acting out of fear and trauma of what he had been through last week.

Then Isaac and I headed home. On the way home he asked for some MacDonalds and I thought, "wow, he is feeling better!". Alan and I got him MacDonalds for dinner and Isaac ate 4 of the 6 chicken nuggets and a bit of the chips, the chocolate milkshake and we cooked him up some brocholi which he ate the lot of :-) No tears but there was HEAPS of GROSS gagging!!! Hahahahahahahaha! He told us that God had told him to eat all his tea and not worry about his throat hurting.....so he did. Impressive hey????

Isaac also had only 3 doses of panadol for pain relief today instead of 4 doses! He is now off the tramadol (strong pain relief).

He is still waking distressed at night where he isn't awake and you have to wake him to calm him down. Shame. He still is very pale. However, he may be able to go to school on Monday. We will trial him and if he doesn't cope, he can stay home the next day.

In one week, as I said, we need to have those bloods taken for him to check his CBC (Complete blood count, platelets, haemaglobin), his INR and prothrombin times (clotting times) and whether his marrow is producing the baby red blood cells properly (reticulytes,....test has a longer name). Because he is pale and had the bleed they want to check that these are all ok. Also, he had the abnormal clotting...it was too slow so they want to see if it is like that when he is well and eating more normally. What a joy. I pray that it all goes well.

As for me, stay in tune for my bone marrow biopsy date, my follow up MRI for my head and neck and sinuses and ENT follow up, gynae follow up and may be biopsy of down there again.....and my liver/breast ultrasounds that I am due. I had the dentist about 2 weeks ago. I also have a dermatology appointment to check the normal and see what my head scar is doing.

Thanks for checking in everyone!
Thanks for the support!
Love Charisse

Tonsilectomy

Hi All,

well, the paed agreed that the sleep apnoea theory sounds correct. So I took Isaac to the GP and got a referral and we spoke to the ENT office where I go for FA screening and they have someone there who does children. Isaac has an appointment to see him on Tuesday afternoon and they have already booked his surgery to take the tonsils out on Wednesday coming on the 1pm list. Isaac will stay at least one night in hospital. This is big for Isaac as he freaks out over things with hospital. I think memories from being a premie baby. He had to go through a lot and had heaps of tape on his face and as a result is overly terrified of hospital things and bandaides and so on. We have had some good chats though. Isaac said he is nervous and a bit scared but he seems to understand why he has to have a tonsilectomy and that it should make him feel much better. He seems comfortable that nurses like mummy will give him pain medication to help with it hurting. The IV drip is something we are still working through. He is terrified. Tonight it seemed like he might allow it without kicking up a fuss. We will talk more about it though and help him see why he would need it.

So that happened all so fast. I managed to switch my nursing shift from Wed when Isaac's surgery is to Friday. So that is good.

Mum and dad go to Africa for 6 weeks on Tuesday. However, I am not worried as I have good support from Alan and our private nanny and my mother-in-law (other mother). Thanks Guys!

Well, I am going to bed. The paed said that we are hoping this tonsilectomy will solve problems by allowing him to breathe better and get proper rest. If his tiredness continues more tests will be done to find out why as it is unusual that he is so tired with 11 to 12 hour sleep at night. I thought I would also get his eyes checked to see if that could be related to any tiredness and lack of concentration. This will all get worked out.

Thanks for your support! Everyone.....thanks.
Love Charisse

Our New Kitten Bella

Ok, hi everyone,
it has been a little while since I wrote. I just couldn't be bothered! Sorry. I have been really busy! I have been lap swimming and helping my sister from time to time, being a mother to Isaac and enjoying our new kitten, Bella!

We got her two weeks ago and she was 7 weeks old. So she is 9 weeks old now. She has grown quite a lot in 2 weeks but is still SO small! You forget how small kittens are. Trying to keep watch over Isaac while he plays with his new kitten. He gets SO excited and she is SO little, I worry he will break her at times! So I have been busy trying to teach Isaac to be a good little owner. Bella is so sweet and very affectionate. She purrs like a tractor and she loves a good cuddle. This is good for Isaac. She was born into a family with little children so she is used to children but we still need to watch Isaac while he plays. The picture under here is of Isaac's areoplane that he made and Bella was his passenger in the back. Cute. Isaac had a walkie talkie thing on his head and was the pilot. This is rather an odd picture of myself. Must be the angle of the camera as I look out of proportion but Bella is asleep in my arms like a baby. I love baby things. When my sister in law saw Bella on Friday she said that the pictures make her look big compared to how little she is in real life. Bella is very little :-)

Bella on her first day at home....

Isaac's very first proper cuddle at home. His face says it all! He was very pleased :-)

I like this photo. Isaac's legs looks huge!

Bella playing :-)

She stayed in the bathroom for the first 2 or 3 nights and then was transferred into the laundry to sleep with Matilda, our 6 year old cat. They are still getting to know each other but Matilda is quite tolerant of Bella. Bella is now brave enough to sneak up on Matilda.

What else has happened? I had infusion on Friday. I was disappointed by my bloods and a little nervous at what my bone marrow biopsy might show this year. *sigh* I wish that counts NEVER went down! It's my platelets that seem to worry me the most. I keep plodding along though.

I have been dealing with lots of things. I have reached the stage where I want to work through the last moments of my brother's death and this means visiting a transplant unit with a social worker, being taken through and having this person talk me through feelings, smells, visions and anything else that seems to happen when I am near one. I haven't been through or close to a transplant unit since Shannon died 15 years ago. I know that God has brought me to a place where it is time to walk through the door to some more emotional healing so I am not bound by fear all the time. If I ever was supposed to have my own transplant, I wouldn't be able to walk through the door. However, even if I was not to ever transplant, I am bound by the fear of that last day with my brother and I need to face it and receive that healing from those painful and scary moments. I have been greatly encouraged by Delia's journey and her transplant and it has led me to think a lot about my brother and what happened and I have had a desire to deal with it. I think God has finally given me the courage and strength to go through this. I am really scared and nervous about this all. When I see my haem/oncol this Wednesday I will talk to him about all this. I hope I won't break down. I have never been able to chat about this stuff without, literally, freaking out.

Well, next infusion is in 5 weeks time. I will be interested to see what my IgG levels are then.

One more week of school left and then it is Easter and school holidays :-)

Ok, I am tired so I am going to go.

Update more later.

Love Charisse

Be Brave and Shave........

Greetings everyone,
well I have been feeling a bit better this week. I am finally starting to heal properly from the bowel episode and for the first time today, I had no pain relief during the day! Yay! I was able to walk more properly and move around. Tomorrow I will attempt to do my lap swimming. I also ended up having no infection even though I had a script for antibiotics just in case, I didn't have to use it and I am relieved :-)

I am starting to get used to our cat, Jerry, not being here. I still miss him greatly. We all do. However, it is getting easier. Isaac is definitely finding it easier and life is moving along. Isaac says he misses Jerry and mentioned calling the next kitten, Jerry....but we will discourage him from that I think. Our other cat, Matilda, has stepped up to the bar really. She has chosen to join us in the lounge room at night just like Jerry used to. She is more cuddly and on our laps and heaps playful. We have to get the scratchy pole out for her at night and play with some wool. She ran round and round the lounge with Isaac and wool on Saturday which is really different. We are enjoying her company! It makes things easier :-)

What else has been happening. Be brave and shave.....hehe. The Leukaemia Foundation has a huge fundraiser once a year. It used to be that you tell people you are going to shave off all your hair, they donate money to the cause, and on a certain date you shave! Well now this can include colouring your hair, waxing certain parts of the body or shaving! Since the Leukaemia Foundation does a lot of work for leukaemia and other blood disorders, it will also help FA even though they don't do work specifically on our rare disease, FA. Alan decided to partipate and he got some good donations. Alan chose to colour his hair, shave off his beard and wax his whole back! Yes, Alan has a hairy back....not disgustingly hairy but he has not liked it. So today was the day for Alan. I have provided some pictures. Here he is with a beard, shaving it off and the final product, without a beard. Then he went to the hair dresser for a colour..........

They convinced him to tint his eyebrows too....since he went from being light to a deep, chocolate brown colour....hehe. Alan having his eyebrows tinted below.

The the back waxing and Alan said it hurt A LOT! Apparently this picture was taken when it hurt the most! Hehe

His back without hair and red......

The final product. Alan looks SO different and I am not sure what to think. He still looks nice and not disgusting. He always looks so young without his beard! I can't get over the eye brows....hehe So well done, Alan...and for a great cause and you raised some good money as well! How cool would it be to have a fundraiser that is just as fun!!!! Haha!

So on to another topic. Just over a week ago I became a new Aunty to my 2nd niece, Elizabeth. Here are some photos of her just 3 days old. My sister tells me she looks like me. She has similar lips.......

Me with my 2 nieces, Eliana and Elizabeth, and my gorgeous son, Isaac

Me and my 2 nieces and my mum...

This is Elizabeth the day she was born......a bit different the the 3 days later at the top!

The day Elizabeth was born......we have similar faces

She was awake for almost an hour and a half, just looking at me.........she is beautiful. I am a proud Aunty.

Well, that is enough excitement for today. Thanks for stopping by! I will have more news later I am sure! I am off to relax with Alan!

Love Charisse