Deep Feeling On New Years

Please...anyone who wants to see the photos I added refer to the post before. I wouldn't usually do another post so quickly but I feel like I need to just talk about my feelings here. I hide them so well at this time of the year but I become overwhelmed by them and then I burst out in tears. I have had a good Christmas. I am very interested to know if any of FA families or FA adults feel this way...the way I will explain.
Every year I feel this way. I watch people celebrating New Years and going to their events and having a good time but it never seems to change the way I feel about New Years and it is with mixed emotions that I enter the New Year and go to a New Year's Eve celebration. Today I have had a tough day. I have felt really emotional and had tears. I have whaled a bit while crying. I am gonna share this and I hope no one thinks I am silly. New Years has 2 different meanings to me......as an adult with FA I made it through another year. I am alive and thank you Lord for that. Then with mixed feelings I am overwhelmed by grief at having FA....grief at having pre-leukaemia and lower counts...grief at what FA may bring this year. Why do I feel this way? Well....it is pretty clear why with what us FA people have to go through...also because I know that in about a months time it is time for my annual bone marrow biopsy and aspiration and I start getting anxious like I am going to have a heart attack. I feel panic because it is SO close...and what are those results going to hold for me in this New Year? What will the New Year be like? Now, I don't have as regular biopsies or aspirations as people would who have pre-leukaemia because I have chosen not to transplant and I could not handle the constant anxiety of receiving results on my blast count all the time. So I choose to still do biopsies etc so that I am in the know...but so it doesn't constantly rule everything in my life...because we my type of personality I would be a wreck all year! The last 3 days I have felt really stressed and anxious and emotional...and then today when I was talking with Alan all these feelings came out and I knew....New Years is different for me....I watch my family celebrate and feel like other people do not have to cope with these feelings as they are at a New Year's Eve event but without a doubt every year....2 or 3 days before and on that night...I have felt these emotions of "can't believe I am still alive" and that is good but also, "oh no...what does the New Year hold?" I don't share these feelings because I don't feel like people would take these feelings seriously and would just dub me as depressed....but New Years is a VERY emotional time for me and I have these things going on in my head all the time! I look at my son and worry if I will be here for him the next year...I look at him and marvel at how I was able to spend this year with him! The other hard thing about New Years is that I am really tired from Christmas. 5 days is not enough to recover from the huge days out that you have with Christmas celebrations. I enjoy Christmas more than New Years....I save every ounce of energy for the Christmas celebrations. Christmas means a lot to me....its meaning of hope and I feel so encouraged....but I am so discouraged that I feel so discouraged in the lead up to New Years. Sometimes I just need to relax but I can't handle being too alone on New Years.....but I get so tired and get worried I will not handle it........although I know that as long as you have someone to spend New Years with....it doesn't matter. My mind is working hard.
Some people would say, "Just trust in God".....however, I believe I do. Sometimes trusting doesn't always stop the thoughts and feelings and also...God is God....I also believe that He can do what He wants to do....how to we explain FA children passing away.....when it is their time. Yes, we can pray and God can change things. He is God. I don't think I have the wrong view....we have prayer meetings every week to pray for my healing but God is God....and in the end it is all His decision........"trust in God" and do what you think God is telling you for your life. Sometimes the heavy load of having FA and the question of when is it my time makes me feel anxious..........that is because I want to live. I want to live as long as everyone who doesn't have FA....it doesn't mean I don't trust God! Some people would say that I don't trust God if this is what my mind is doing and I actually disagree with that point of view. These feelings are real and God...Jesus my Saviour knows that this is all very real for me...and I honestly think that Jesus will honour me for being so honest. I may seem very deep in thought today. New Year is a happy time but it is also a grieving time....they are mixed and I am sure that some FA families really understand that. We try and make the best of New Years even though we have some feelings and thoughts that are hard to contend with.......and that is ok......it is ok to feel this way. That is what my pyschologist used to tell me. It is ok to admit to feelings....it doesn't mean that I am not making the best of everything or enjoying stuff. I enjoy things more if I admit to these feelings because then I have vented things and are not "alone" in my thoughts which makes me feel more released.
Ok, I have talked alot. Thanks for listening and have a good New Years even though I know there are many people out there dealing with loss of Children and adults.....this is the first New years without their children or partners or wives or husbands.....and then there are the people fighting for their lives amongst the celebration! I just wanted to say...I understand you people and it is ok to feel that way. We still celebrate...but there are mixed emotions and that is ok.
Bless you guys,
Happy New Year.
Love Charisse

Assorted Photos!

This is tonight. We spent a big day out at Alan's birth Father's House with his partner and Uncle Darren and Aunty Angela. It was a good day. Isaac got new PJ's from Grandapa and Angela (Alan's natural father and partner) and I got a new dressing gown which I love. I have another dressing gown at home but it is more of a winter one so it is wonderful to have for summer. I am so pleased. Isaac and I got in our PJ's not long after we got home and we were actually trying to take pictures of Isaac in his new Thomas PJ's because he looks so cute but he wanted photos of us together in our new stuff instead. So Isaac and I are laying on the main bed in our bedroom and Jerry his cat, came to lay with us too. Isaac also wanted us to take photos of Jerry. So this is Isaac, myself and Jerry!






This is Isaac on my bed, wearing his new PJ's but he insisted that his little lion friends have a photo with him...."Rouchy" and "Gordon"...hehe...I think this is a sweet photo of Isaac's face. Oh and I didn't mention that this gathering we had today is our belated Christmas gathering because we have trouble fitting in 3 families on Christmas Day....that is why we were giving and receiving presents.

I think that my neck looks fat in this photo, however, it is still a very sweet photo. Isaac wanted to gaze at his mumma and have a photo taken.

I think this is a sweet photo. Isaac is in his new PJ's ...not that you can see them but I am in my new dressing gown and Isaac gave me such a sweet hug. I really think I look like my mother in this photo. The smile is exactly like some of her photos when she was younger! Amazing. My hair is a bit ruffled....hehe.
Anyway, we had a great time today. Thanks to Aunty Angela, Uncle Darren, Grandpa Ian and Angela.....and of course....Nanna Howard-Jones to..or great Nanna to Isaac. It was great.
Thanks Teresa for talking me through how to add photos because I finally did it just not with my holiday photos. Now that I am confident in adding photos I will do this a lot more! Anyone who wants to know more medical updates for now please refer to the post before hand....and I will also get to post thpse photos of Alan being the donkey on Christmas Eve with me as Mary and Isaac as Joseph!
Bless you all
Charisse

A Howard-Jones Christmas!

Merry Christmas everyone!
Well thought I would update on how Christmas actually went.
We went to our Christmas Eve Service at church on the 24th and it was very nice. Isaac did so well at being Joseph leading Alan who was the donkey, down the isle with me on his back as Mary....hehe....a lot of the people in the church roared with laughter. We have very different cultures in our church and I suppose some found it quite funny. Isaac was so sweet as he laid our "baby Jesus" in the manger to the music and we all sat there waiting for the music to finish after we had walked to the manger. It went very well. Isaac was a little embarrassed at the laughter and I had to explain they were not laughing at him but probably at daddy's ears that we had for him to be a donkey..and he was ok with that. Isaac did SO well.
Christmas Day. Isaac didn't wake til 0730am which was a nice surprise for us...especially Alan who gets up when Isaac gets up to let me rest a little longer. Isaac apparently ran into the presents and the tree and then woke Alan up saying excitedly that there were presents under the tree and they woke me at 8am! We went into the lounge and opened presents and Isaac was very excited to have "James" the engine from the Thomas series. He has been waiting so long and was so excited. He got a new helmet which is a nice red and he got a big swing set for outdoors...he was so sweet, "Santa knew I didn't have one yet" he says.
We had the morning at home as a family and then rushed off for lunch on the other side of town with Alan's family and extended relatives. It was so busy. Lots of present opening and food and family and laughing and talking. We only got home around 6pm and then we rushed off to my family's do for Christmas dinner. Isaac had not yet had time to play with his new toys...especially James. We left and forgot 2 presents and we felt a little stressed and Alan came back to get them...we got to my sisters and we were very tired right then. Isaac had not slept all day and you know what it is like when they have not slept.....also he had not had any "time alone" time. He had had people in his "space" all day so when we got to my sisters his behaviour was saying that he needed time alone and needed a break from the people. A few tears between the cousins...a cuddle in the end room....opening more presents for the children and finally....SLEEP TIME for Isaac. He was not sure about sleeping where he was so I lay with him for a while...after a short time he was asleep....ah yes...now adult time. So we had dinner and then opened the adult presents and then we went home after midnight....Alan and I got to sleep at 2 am that morning and I am exhausted two days later. I slept in yesterday but today I have actually felt nauseated all day and aggitated! I know that Christmas Day was a big push for me and going to bed VERY late. BUT...it was fun and I had a great time except for the brief moments of stress that evening with me feeling exhausted and Isaac really tired and forgetting the presents...but it worked out.
Now....getting ready for New Year's Eve. We have a special service with church every New Years....an African tradition. We never used to have this and we would go to Alan's family or have something at our house...and all our friends used to come. I must admit that I do miss that quite a lot. However, for the last number of years we have gone to this service. The Africans love to dance at midnight. They are quite party animals. It is fun...it is a BIG night! Alan and I are planning on leaving just after 12 mid night and are trying not to stay. It is hard when you enjoy yourself and have to be strict about leaving for health reasons....like me getting totally exhausted and taking twice as long to recover from it....but we try and be more strict because of the after affect it may have on me. So that will be New Year's Eve...and then New Year's Day we will all be at home recovering from the big do.....back into normal living after that. I start with appointments in regards to my surgery on the 21st January...the specialists I must see to prepare for the surgery. May be I will work a little before the surgery. Being on the casual pool for nursing can sometimes be slow around Christmas and New Year and January.
Well, I better go. We have mum and dad coming up to have a BBQ and use our new outdoor table and chairs that Alan got for Christmas from mum and dad.
Thanks for reading! Merry Christmas and Happy New Year!
Love Charisse

Merry Christmas!

Hello Everyone!

Well I had my GP check the lump under my arm and he reckons, without a doubt, that it was an infection and he was SO surprised that I had waited 5 days to have it checked because it could have been very serious for me. He added that he was very pleased to see that my body had fought off the majority on its own. It has gone down heaps and is not firey or sore anymore..just achey. I don't feel nauseated from it anymore either.

Well, it is Christmas Eve. In an hour Alan, Isaac and I are off to our Christmas Eve service at church. Alan, Isaac and I are doing the nativity scene to "Away in a Manger". We will walk down the isle and Alan will be dressed up as a donkey, me as Mary holding baby Jesus and Isaac leading Alan, the donkey, dressed up as Joseph. I hope Isaac doesn't get stage fright!

Tomorrow is Christmas Day! Yay...Isaac is excited and can't wait to see whether he got "James" - one of the tank engines from the Thomas series.....yep...we won't let him be disappointed. He is getting lots of exciting stuff! I can't wait to see the excitement on his face.

Alan and I are both excited as well....lunch with his family and dinner with my side of the family. It will be great. Then in a week...lunch with his biological dad and family. It will be great!

Ok, got to get ready for the service! I am WELL for Christmas!
Love Charisse

Medical Update

Hi All!
Ok, had my infusion (IVIG) yesterday and it went better than last time. I insisted on the nurses using the vein that I pointed out and running the infusion at the lower rate that I preferred. I even checked the pump and was going to change it if they didn't listen to me! However, the doctor and everyone listened to me today and it was relief. I was so nervous about going. There have been some VERY grumpy nurses. There are specifically two nurses who are in their 40's and 50's who are grumps and I actually get nervous going to infusion because they make me feel uncomfortable! One turned to me very seriously and said, "we like it when people complement us but when they tell us we are doing wrong we become offended". I was shocked because I feel like they always get cross when I am not happy with the care and then I become scared to ask for something or when I feel sick from infusion. So Thursday night at prayer meeting I asked for us to pray for a nurse to be there who was nice. I know the names of the ones who are nice too. When I went yesterday that specific nurse was there and I have not seen her for ages. She told me that she was not rostered on for today but got called in! What an answer to prayer!...hehe....it really was...she did my jelco and was so nice and happy and set my rate and made the day a lot more comfortable...praise the Lord. That little answer to prayer really helped me endure the IVIG a lot better. The doctor increased my pre-meds which I think helped.
Although last night when I got home I felt much better, as the night went on I became anxious and over the Christmas shopping and all! I don't remember much from last night but Alan was telling me more about it. I really wasn't myself last night and the infusion does that to me. I have been so normal the last 2 weeks...it is odd when you suddenly change. I was uncomfortable and aggitated and weird...was definitely infusion and then when I woke this morning my muscles were all twitching and shaking and I woke up with a really sore, reasonable lump under my left arm which makes me feel nauseated when I touch it! It is quite big and was not there before infusion yesterday. So I am guessing it is an immune response to the IVIG infusion and is my lymph node that has come up really hard and sore. The IVIG is human antibodies so technically every 4 weeks I am receiving a foreign antibody and immunity so my body has an immune response (just like babies when they have their immunisations) and it responds with headaches or flu symptoms, confusion and aggitation, muscle spasms and shaking and of course, the lymph nodes coming up. I will go to my GP this week to check that it is just the lymph nodes...as I said it was not there yesterday and only this morning....must be related to an immune response from infusion. So I feel all weak today when yesterday I woke up feeling so strong before infusion....infusion really does affect me strangely for a week...the immune response to it...and then after a week, the infusion strengthens my whole immunity so I can live without many more infections for the whole month! It is so strange how things work.

My big gynae surgery has now been re-booked. It is gonna be on the 21st January...only about 5 weeks away. Pre-anaesthetic on the 17th! An appointment with my haematologist in regards to any bloods that may be needed on the 4th of January. It is a private operation so I won't go into any detail but i am excited and scared all in one. I will have a rather big abdominal incision. It will be interesting to see how long it takes to recover but I am anxious to have this surgery out the way. It is two weeks before Isaac starts big boy school. We thought it was wise to do that because if Isaac starts school and I suddenly have surgery he is likely to worry about me while he is at school and want to be home. So if I have it in the last 2 weeks of his holidays he can be involved and know I am not sick, just having surgery and can spend as much time visiting me as he would like, feeling reassured. The pneumonia bout 5 months ago really scared him. I should be home recovering by the time he starts his new school and reception...and I can try and support him more rather than being in hospital. SO that is big news.

Did I say Isaac got his "preschool diploma" last week. He graduated from preschool....so cute. He cried afterwards and said he was sad because he wants to stay at preschool and not go to school. He is now on 7 weeks holiday before he starts school.

Well, I have almost finished my Christmas shopping and will be glad when I am done. It has been overwhelming at the shops! BUT, I must admit...really fun.

We went swimming with my neice again this past Tuesday. Isaac always enjoys that.

Ok, I am a little tired from the computer and need to finish looking decent before Isaac is up from his afternoon sleep!
Thanks for checking up on us....
Love Charisse

YES!

It is SO good to have a good week and feel good. This week has been good. I have been very proud of myself. I managed to get to morning church for the first time in 4 months on Sunday. I had been too tired from being sick those many months ago and had not managed for 4 months to get up in the morning. I have not been at work for about 6 months. It has been a long time. I think the QLD holiday did me well. I managed very well at church. I have been going at night time for 4 months and to a different church. Our church didn't have night services. Not only did I go on Sunday morning to my own church but I didn't wake up terrible the next day. I managed to go to the photo shoot that we had booked for Alan, Isaac and I on Monday...enjoyed that. Isaac giggled at the photographer all the way through. We then went to my sister's house after that and that was enjoyable and came home. Tuesday I felt a little weary in the morning but endeavered to get out and go swimming with my mum, my neice, sister and Isaac. We were out til 3pm and came home...Isaac had a sleep and then we went to my first celebrations night for Isaac's preschool and the school affiliated with his preschool. Isaac did an item with his class at the big assembly called "Fancy Dance" and he was so cute dancing. I was trying to video him and it shook because I was laughing at Isaac dancing! Today, Wednesday, we took Isaac to the "magic cave" where our main Santa is and lined up for Santa. Well, finally, I am exhausted and my body is telling me to spend the rest of the week at home. Buy what a great effort!
I am hopeless at loading up the holiday photos...but I WILL (you think, "yeah right!"). I also will upload some pictures of Isaac dancing....hehe.
Ok, just wanted to let you know how I am!
Love Charisse

Can you Believe it?

Ok, so I have not got the holiday photos up yet. I have not had the time yet. Pretty much as soon as we got home our internet all changed and it went off line for a week or so and now the silly computer doesn't want to do some requests. I know this computer needs a clean up but WHY....WHY when something is changed does this thing THEN freak out!? While I write this it keeps popping up with something that it cannot do during the programme and it drives me crazy........

It has felt annoying and crazy since we got back. There was some conflict that happened and then ....well before that I had stomach trouble and that has lasted for almost 2 weeks....I am still having this problem.......another personal thing happened and I have felt a bit flat.

When you come back from holidays and this stuff happens you feel like it is the state...like Adelaide that is the problem and I immediately wanted to run away from here back to QLD where it is more relaxing and I don't have to worry about much....but I suppose FA will follow me where ever I will go.

At least some things are worked out...but this stomach problem is very discouraging.

Alan has started his new job and enjoying and next week we have a new car. Isaac did pre-entry at his new school yesterday and enjoyed it very much.

As soon as I feel I have more time I will load those photos on.
Thanks for checking in! It is hot here and I can't wait until I can just spend time in the pool. I have trouble handling the heat....but as long as I can keep cool all will be fine.
Love Charisse

We are Home!

Hi Everyone!
Wow, it feels like forever since I wrote in this journal.
We are back from Queensland in North-Eastern Australia. It was a wonderful holiday. We went to SeaWorld there and visited the man made glo worm cave. We went to parks and for walks and to a place called O'Reiley. At O'Reiley there are parrots which sit on your head and shoulders and anywhere you put food. They are so tame. You busy special seed and feed them. Isaac was rather frightened at first but after we went on the Tree Top Walk he told us he thought he was brave enough to have a bird on his head. He enjoyed it SO much. I have pictures and need to put them on here so you can see. The Tree Top walk is exactly that.....we are on a big mountain and they do bridges high into the trees that you walk along. It is very high up and can be a little scary, but it is beautiful. Isaac wasn't scared at all!
We also went to visit the Strawberry Farm, but unfortunately when we got there they were closed due to being burnt down. It was so disappointing. They make special milkshakes and icecreams with whole strawberries and have an animal nursery where you can feed baby animals with bottles of milk. But it was closed. Isaac was so disappointed and to be honest, I felt really sad. It is something that my family did every time we went to Queensland and we went every year for a long time. My dad's family is up there. My grandparents lived there to so we used to do all sorts of fun things.
What else did we do? Thinking.....um....we stayed on the moutain with my Aunty Shirley and Uncle Bob. They have 2 acres of land and there own banana trees and avocado trees and nuts and stuff. They let Isaac ride on the ride on lawn mower and Isaac also steered it. He thought that was great. One day while he was sleeping Alan and I went around the yard and took nice and funny pictures of each other and the yard for memory sakes. I need to get the photos printed from my digital camera so I can make up our family album of our holiday.

We walked up hills which I surprised myself. I have been so well while away and felt most of my worried go. I had a break from the medical world and lived in fanatsy for a while.
At SeaWorld we went on rides and saw dolphins and shark enclosures. Isaac went on rides with us and loved it. He loved going on a ride which was a water one and at the end you come down a steep slippery dip in the small boat and get wet. He squealed all the way with laughter and it was great to watch him have so much joy. I also loved that ride. I squealed along with him. It was so much fun. We went to Sesame Street section in SeaWorld and I also went on all the children's rides with Isaac which I must admit, was very fun. He is so adventurous now.
Isaac turned 5 years old while we were away on the 8th November. He was so excited at his birthday. We had a party with my cousin and her children and Aunty Shirley and Uncle Bob. It was great! Isaac loved their children...particulary the youngest who is 12....Michael is his name. He followed Michael everywhere. Michael was such a good sport and played with Isaac.

We went to the Brisbane museum on Isaac's birthday and on the City Cat boat on the river which goes fast. We did a lot. Some days I was so exhausted we stayed at home. However, I have not had so much fun for a long time.

I was ready to come home to my house....but not ready to enter back into normal FA life with all the appointments and infusions and stuff.

So today....only the second day home I was due my IVIG infusion and I had a really yucky day. First of all it was 34 degrees celcius today and the cancer center is in a warehouse. They didn't turn the air-conditioner on and I become heat affected very easily. I get heat stroke very easily and then my body becomes a furnace and I have trouble cooling down. They also sent an inexperienced nurse to put my jeclo/IV access in and draw blood and she did so badly that they IV access bent so badly that I was in so much pain and they couldn't get my infusion in. The blood was taken badly that it clotted and clumped and they were not able to do my counts. I finally asked for a nurse who had done me lots before. However, my veins all collapsed and I was stuck another 3 to 4 times before a jelco was in. I then felt so sick because they had put hot blankets on me to help my veins and with no air-conditioning my body heated up and I had to run to the bathroom because I felt I was going to faint and throw up. I threw water all over my face. This happened 2 to 3 times today. I cannot have the infusion run fast because I react and so I insist upon the rate that I can handle and then the nurse changed it when I had my second bottle up to see how I would go and I began shaking and really cold, yet still feeling like a furnace and had to run to the bathroom again fearing I would throw up. They then put hot blankets on me to stop the shivering and I didn't want them but I felt that I HAD to have them even after refusing. So I became over heated and had to run back to the bathroom and put cool water on my face. I then asked for ice to suck because I was so hot. Eventually I asked if the air-con was on and the nurse said she thought so only to come back and tell me sorry it had been off! I was so overheated I felt horrible. I insisted on the infusion coming down to the rate I can handle and coped a bit better. My arm is covered in bruises from their attacks of putting the jelco in and I am unimpressed. I think anyone...whether they even had really high platelets...would suffer bruises because it really hurt badly today!
Thanks Denise for being with me today. I got through it and am now at home. So this was not a nice start to medical things for me after my holiday. I was horrified. I wanted to cry so badly.
do you think I am complaining too much...sorry if that is what it feels like.
Hopefully this week won't have bad IVIG reactions because of them running it too fast today at some point. Last time they did that I had a very bad week.
My favourite nurse was not there today. The male nurse I spoke of last time. I know he would have spoken up for me today and he would have been checking if I was all right.
It is my neice's birthday this Saturday. She turns one. We got her "My first Rider" for her birthday. Hmmm...it is exactly what it says...a little rider for her. She is now crawling and pulling up a bit. I have not seen her for about 6 weeks. She and her family went on holiday and when they were coming back we were leaving and so we missed each other.
Hmmm...how do I put photos on this site. I will have to ask Alan. I want to post some of my holiday.

Let me see...hang on....ok, I think my next post will be the photos. Alan is busy right now and i need to wait until Isaac is in bed.

In a couple of weeks I have another ENT appointment to check an area on my tongue...under it actually. We have been deciding whether to biopsy it or not. It actually has vanished a bit.....we were not sure if my bouncing neutrophils were causing all the ulcers and stuff....this white section actually peels off part of my tongue. I have not got a sensitive spot there anymore and I can't see white at the moment. So we will have it checked again. I am also due my annual scope for head and neck cancer and my annual MRI of my head to routinely check for cancer.

I should be able to have that big gynae surgery in January. I have been very well. I am hoping to get back to work for a shift or two before Christmas....not push it. And be back at morning church soon. I am doing well with energy levels and I know my boundaries very well. I just need to work within my boundaries and know that people realise I am doing my very best.

Well that is all for now. Thanks for checking up on me. I will try and post photos very soon.
Love Charisse

what a day!

Hello Everyone,
I am feeling tired and strange and stressed all in one. What a crazy day. It was not too bad at the beginning but going into the evening was bad. We have been packing for our holiday which starts tomorrow morning with an early flight to Queensland. It has been so busy with trying to get the house in order and pack everything that Isaac might need, including clothes, nappies, snugglies, dummies,toys, medicines and not just all his but my clothes and toiletries and medicine...oh do I have such a long list of medicines it is overwhelming. I think Isaac could sense my stress because he became roudy and holding onto me..not listening to me and I am so tired that I just lost it and yelled at him...which I fel so bad about. We have made up and said sorry to each other...but we really needed him to calm down so we could do the rest of the packing. I have been feeling stressed and then tomorrow I have to get up so early...the earliet I have ever had to get up since pneumonia and am worried about how my body will cope!

Can I do it and survive the day. I so just want to be there. It is gonna be the break that I need? we will have such fun.....no pressure....from work related issues in all areas....and no pressure from medical issues in all areas......ahhh....it will be relaxing once the packing is finished and we are all on the plane!
Pray for our safe arriving and for our safe holiday. Pray I don't get sick and end up needing hospital treatment...pray we get home safe....pray our cats at home will be looked after properly and be safe.....Darren you can expect me wanting to check on the cats and ring to see how you are going.
Well, I hope I sleep well tonight.
Thanks for checking in with me.
Love Charisse

Deep thinking

Hi Guys,
sorry about the small update last time. I felt pretty bad from my infusion all week but now I feel a lot better.
My neutrophils have been going all over the place. They are up one week and then down the next...that trend all the time. They have been like this since the pneumonia. I didn't have problems with them before. Of course it made me worried when a couple of weeks ago the count came back at "o". I had a good chat with the specialist about it and he thinks the trend is showing that I have cyclic neutropenia. This can go on for a little while and can be caused by trauma like pneumonia and stuff. The week after the neuts were "0" they were 900 so they had come back up a bit again. I wonder what they are this count. The week after the 900. I find out this week. Due to the neutrophils going everywhere I have started with bad mouth ulcers. It is frustrating. I get bad mouth ulcers when the count is low but with it cycling so much they only start to heal and then I have more. I feel a little miserable about that. Hopefully the neuts will stabalise soon again. They may do this for a while.
My platelet count has stabalised more now. It is more predicatable now and is higher. My haemaglobin has stabalised well within normal range which is good.
I feel, physically, so much better! I am definitely getting back to my normal strength now. I have been waking much more earlier. I am doing better. I will be on track for my surgery in the new year....wow and then back to being weaker again. However, the surgery that I am having is very important to me even though it can take 12 weeks to recover.
I was told about 12 weeks to recover from pneumonia and it has been about 7 to 8 weeks now.
Surgery is different though. I don't know if I will recover faster or slower than what they have said but I am excited about the surgery. That must sound so weird to people. This surgery marks a new beginning in my life...I am not going to explain it further than that...but I am not looking forward to feeling sore and stuff...but I am looking forward to having it done and following the next part of my journey.
I am due a bone marrow biopsy sometime in the new year as well....hmm...something I am NOT looking forward to. Those times are always so anxious and a bone marrow biopsy kind of brings everything that I am scared of with FA up to the surface....blast counts, pre-leukaemia, full on leukaemia.....failure and everything that they check on more....oh dear.....even though Alan and I have chosen not to transplant it is still scary doing these biopsies...we have chosen to stay well informed so we would be aware of anything that could happen. Also, I can change my mind in regards to treatment...just with FA the ideal time to choose treatment is when your marrow is more healthy.

I have been feeling rather highly strung lately. We have had some new things happening....having a full time nanny. We were supposed to be interviewing to find the person who would be our permanent nanny and the nanny agency have had no one to give us! Obviously we have had one nanny because someone is coming but I have been feeling very unsettled and anxious about numerous things. We wouldn't usually have a full time nanny but we qualified for help in the home for 13 weeks free because I was so sick in hospital with the pneumonia and having a hard time at home while recovering. I am feeling much better now though.....so I have been a little anxious about some things. You know me.....once I start to worry about something it sticks in my mind until they are resolved and I get really anxious!
We do have a permanent nanny who comes every Thursday. That is very normal for me because she has been coming for a year and a half and it is all a part of routine. She is not free...hehe..I mean the others are obviously being paid but not by us...it is a service to people who need extra help in extreme circumstances. It is a good service.
The other thing I have been so worried about it my tongue. It has had white sections underneath the tongue on the side. I don't remember noticing this before and every day I wake up and look to see if it has gone. It comes and goes during the day in how white it is and if I have more ulcers it seems whiter. Weird! When I wake up it is more white than after I brush my teeth and wash out my mouth...may be a normal coating that comes when you have a sore mouth? May be I have had it before when I get ulcers. It is just that this is the first time I have had bad ulcers for a long time. The trauma from pneumonia and my marrow brought them on. I had not had bad ulcers for a year before that! Anyway, I have another ENT apppointment tomorrow and I will show it to him. He has been watching my mouth and said that we may biopsy some stuff if it stays around. So I have been anxious that he would tell me it is so important that I must cancel my holiday to Queensland, in Northern Australia, and have the biopsy done. I am only gone for 2 weeks and he may not be able to put me in right away and I may not even need the biopsy done. However, every holiday that I have done lately feels like FA has ruined it! That doesn't feel fair and sometimes I just don't want it to ruin it. I will go to my holiday. The holiday is just as important medically as well. I have been stressed lately and NEED to get away just with Alan and Isaac. I have actually been feeling highly stressed....I need that holiday. I need to be free and then I can continue with everything....I just need these two weeks. We leave on Friday....I will be back in time for my next infusion...welcome home!
After the holiday I feel that I might be able to get back to morning church...energy levels are better.
I may even be able to get back to work for a couple of shifts before Christmas! It has been such a long time since I worked at the hospital!
Anyway, tonight at church there is a concert for the kids. The group is called "Rock Fish", a Christian band that is like "High Five". I think Isaac will enjoy it and I know Alan and I will enjoy it.
This year we will be in Queensland when the Christmas Pageant is on in Adelaide. What a shame but we will have a good time on holiday.
Well, I have probably written a book by now....hehe..thanks for reading!

OH I just remembered some things. Alan is doing well. He has his final day with his work on Tuesday. He has finished! He starts a new job when we get back from holidays. This is exciting for the family but even more exciting for Alan. He has been hanging out to leave the job he was in....so that will be happening.

Isaac has an afternoon with his new school on Wednesday. He will be turning 5 on the 8th November. Can you believe it? My boy growing up! Starting his first year of proper school next year! He has 3 days and an orientation day that he attends at his new school this term. We will be away for one of those days. However, he will still be here for 2 pre-entry days and the orientation. Wed is his first pre-entry and he will be placed with his class. I am nervous! It is a new thing...putting Isaac in the hands of new teachers and new people ...new surroundings! I hope he will be all right...hehe...a mother who worries.

Also, a very special and important date coming up here in Australia. October 29th which is this Monday is FA Day. We are fundraising with the little yellow FA man which is a key ring. If you want to order the key rings please go to:

http://www.faday.org.au

There will be a link to the "donations" page where you can fill out something for an order of the FA man key rings.

Also the 29th was chosen in honour of my brother, Shannon. It is the anniversary of his death on that date. He has now been gone for 13 years!

Also, hear some stories of Australin people affected with FA on the FA page...
Ok, now I would have written a book...talk later.
Love Charisse

Family Update

Hello All,
well I had my infusion on Friday just gone. They ran the IVIG too fast at one point and I had a reaction...black spots like you are going to faint and then I felt really weird, my arm was all firey and I felt like I couldn't talk. One of my favourite nurses noticed and corrected the rate and also turned it off so I would recover. He responded very quickly with the BP machine and making me comfortable while I had the silly reaction. I have felt a bit off following Friday as well with nausea and headaches. Hopefully it won't last long.

My blood counts were reasonable this week.

There is alot to update on but sitting here right now I don't feel up to it...sorry for the small update...I will come back again and update properly.
Love Charisse

brief update

Hello People,
well I didn't pick up the results to my bloods this week. I will get them on Tuesday even though I could have gotten them last week. I was SO busy last week.
I got a bit stressed actually.
I have been approved to have a nanny for 4 to 5 days a week for free because of the FA and recovering from pneumonia for 13 weeks. While this is really helpful I have also been a bit worried about things like, "how will Isaac and all the grandparents bond when I have a nanny around all the time"..."will I have any private time to myself or be followed around all the time"..."the days when Alan is home...do I have to share him with the nanny and will we ever be able to have time alone"...."when will we be able to just be a family" and "will familiy members stop visiting me because I now have a nanny to help".....and it goes on and on...I have freaked out and had trouble sleeping and been crying and feel strange and feel weird about welcoming someone who I don't know into the house and all sorts. My mouth has ulcers and inflammation througout which I know is always associated with major anxiety. I don't know how I used to live with this high anxiety a year or so ago...it is exhausting. I was worried that the nanny we had tried thought she had the job and yet I want to trial numerous nannies and choose between them.
Besides all of this...the nanny who we had the last 2 days of the week was really good and I can talk to her easily. She is not arrogant and works well with the mother at home and Isaac does like her....she is very good so I will put a tick by her name as one that I like a lot....so my anxiety is not based on her character but everything else that I worry about. However, having a nanny will make me be able to cope better while having so many appointments. It allows me to rest when I need to and be the best mum to Isaac. I thank Jennifer from FA because she has helped me to see this more as well.
It will help me and I we did apply for this because it will help me but when something happens that is new....you panic about how it is gonna fit in with everything else when it actually happens....we are funny as human beings I think.
I panicked when I employed my private nanny on a Thursday but now I couldn't do without her. She is wonderful and one of the family.....and I get rest and am able to be a proper mum with her around and we can go on outings and I have help and don't get as tired and when I am tired she tries to help me as well as look after Isaac. It is the best thing! So This other nanny who will come those other days...it should work out...and I will still see my family and get to do different things and get rest....
Friday this week is my infusion...please pray that goes well..I will have more bloods done again.
Ok, pray my tongue gets better and my mouth.
Our holiday is only 2 weeks away! YES!
I think I am finally not having trouble with my lungs from the pneumonia anymore...I don't puff! I think it is now just my whole body still getting fit and getting well...my marrow is taking longer than the lungs to get itself in order...but that is ok...they told me it would take longer. At least I don't get puffed anymore and any exhaustion I feel is not related to me not having good lung capacity...it is all FA slow recovery stuff!
Ok, got to go....need to go to church tonight.
Love Charisse

It's been a while

Hi All,
got some blood counts back. platelet have come up by 20 000 which is great. Neuts are back up to 1300 and liver results are still coming down which is good.

My chest ultrasound showed no more fluid on the lung...YES!
I am getting better but gradually. My other surgery is re-booked for January.
It is school holidays right now.
Had an ENT appointment to review my tongue. I had all that thrush and ulcers on my tongue and the whiteness which is decreasing but we wanted to make sure there was nothing to be alarmed about. Apparenlty I still have spots in a few areas on my tongue that the ENT want to keep an eye on just because I have FA. In 3 weeks I will go back to see him to see if they are gone otherwise we will probably biopsy thenm...what joys! HOwever, he is hoping it is just due to all the trauma and infection my tongue has been enduring...it is always scary going through this process.
In November for 2 weeks we will be taking a holiday in QLD, northern Australia where all my dad's family are...take Isaac to seaworld....should be nice...nothing will stop us from this holiday!!!!
Ok, better go to bed now.....
Thanks for checking up on me.
Love Charisse

What is Up with us?

Hello All,

well a day or so later I noticed something on Isaac's new tooth. We rang on Monday to ask about it and it is just a cosmetic thing where the cap has been put on and can be fixed in the chair...or funny little bed thing they have for children. Isaac's follow up appointment is on Wed next week. What a relief everything has been ok. He has been SO well this week...no ulcers, no tosilitis and no sore tooth!

After Isaac's surgery I really got very tired. I slept til 1230pm one of the days after. I felt like IVIG was making me tired too but that has passed now. I did get a horrible ulcer on my tongue which is quite deep and my tongue went all white on the sides...that whiteness has decreased now but my tongue is still sore. The ulcer seems smaller today. I have been doing mouth care and next week on Thursday I have an ENT appointment to check my mouth and tongue. Looks like this was all tired induced though and stress from doing heaps more last week.

Today I woke up with an annoying little cough that comes from the base of your throat. I had more Goji Juice and stuff to help me fight it off and not catch the full thing. I also did nothing today and just rested. Isaac had a school appointment for his first year at school next year but I had to let Alan just go, otherwise I would have been pushing myself.

However, yesterday I managed to get to Isaac's preschool for their book launch. All the kids were dressed up in pirate outfits...and Isaac did as well. I honestly thought he would not want to do it. I got there at the end of morning preschool and they were all out on the grass in their make shift pirate ship and they performed 3 pirate songs for us parents and then we had a sausage sizzle (sausages/bread/sauce on the Barby or BBQ). It was a lot of fun and I was so glad that I could watch Isaac. As soon as he saw me he was singing the loudest and doing the biggest actions with a huge smile on his face and many parents commented on how well "that child was singing"...hahaha....it made me laugh.

I was supposed to have a chest ultrasound today to double check that the fluid on my lung is gone....and then I was supposed to see my specialist and have bloods done. I have been SO tired this week...I knew my body could not cope today so we re-scheduled the chest ultrasound until Friday and when I see my GP tomorrow I will have bloods and then we will call the specialist with all the results on Monday. I just feel like whenever I go out...it is to appointments and I never get to just go out and have fun with Isaac because I am too tired from appointments! I just need to be able to relax sometimes!

Isaac didn't have a sleep today. I told him he needed to just rest in his room until Mummy came to get him if he couldn't sleep. He couldn't sleep and part way through his rest time I got out some books for him to look through quietly in his bed. He was so good and read them all to himself until I said he could come out 1/2 hour later. Alan slept for an hour...after Isaac was out of his room again we did some play dough for an hour.....now Isaac is watching a one of his DVD's.

Alan's sister is coming tonight to give me a massage....oh it will be so nice. She came on Saturday and gave me one...a professional one...and Alan too. Jacqui is doing a massage course! She is going to be practising as a fully qualified massager and while she is doing her course she has asked for people to practise on! She does it really well and it has been relaxing for me as well. I get so stressed about FA and other issues related to it that I seem to not relax....and this is really good for me! So Jacqui....if you are reading this....THANKS and you are REALLY GOOD! I hope you get everything you need to get and finish your course and really do well with the massage therapy....I know you will...and it is exciting that you are doing what you really want to do!

Well, if bloods are really different...I will let you know. I hope the platelets are more up this week. They dropped last week. The haemaglobin was holding at 12 and neuts had gone up to 1000 from 100. Liver results were coming down...oh and I have not felt nearly as nauseated this week...what a relief!

I will also let you know about the chest ultrasound for the fluid on the lung. Otherwise, I really think I am getting better slowly.

Yesterday I did some laps around our huge backyard for exercise and I have done some ball play with Isaac outside. I just need to be careful because if I do too much I tend to faint.

I also went to the shops for the first time since the 4th September! And not in a wheelchair. I am not puffing anymore...just got to watch the fainting. I don't need nebulisers anymore...so I am doing well.

Ok, I suppose I better go. Oh I have been having a GREAT time on the Fanconi Island site! Racquel has done a great job with that site and it is great having somewhere to go where you can get emotional support with FA and talk to friends about anything you want. There is so much that benefits us FA families on that site...so if you have not signed up.....I would recommend it!

Better go!
Thanks for checking on me.
Love Charisse

Family Update

Hello All,
well the 19th September has come and gone. That was my original date for my gynae surgery I shared about a little while ago. I definitely would not have been up for that after the pnuemonia so soon. The new date was set for 15th October...however, I am not sure if I will be ready for that either. I am really doing well with my recovery but my marrow is still jumping all over the place...neuts up this week and platelets dropped a bit again.

However, liver results have come down...everything is just everywhere right now. I know one thing though - I am getting stronger each day and have put some weight back on. I lost 10 kilos in total but since the eating has picked up again a couple have come back on again which is good I suppose.

I had infusion (IVIG) this past Wednesday. It went well. I usually have it on a Friday but Isaac had his tooth restoration and tongue surgery today and I needed to be with him. I am SO tired. I have not done this much stuff since I was sick in hospital!

So today Isaac had his surgery and it went well. I had a hard time getting up this morning but mum came with Isaac and I. She drove the car. Isaac did so well. He was a bit rushed and upset when we arrived but after we went into the surgical waiting area in the theatre part he was ok when the nurse offered him a helium balloon. He started talking right away then and skipping around. So he skipped right into the theatre to the doctor and hopped up on my lap understanding that he was going to be given sleepy medicine before he had his tooth fixed. Even though we had talked about it with him, I think he was surprised with the little anaesthetic mask thing they used for the gas and he let them put it on while cradling in my arms but when he was not falling asleep straight away I saw panic in his eyes and he fought and that made me feel emotional and almost cry. He still had his balloon so I was asking him to look at me and look at the balloon and finally he relaxed and he went limp and I found that really emotional. I hate the smell of anaesthetic and operatiing rooms. I am so used to it from procedures with FA and biopsies...as soon as I walked in I tried not to react to the smell. However, after Isaac was falling asleep and was on the table I looked back at him and felt so strange. I found all of that really exhausting and felt like I was going to pass out! Mum and I went for some lunch and I almost did pass out. Once I had a rest on the couch and had some food we headed back to the day surgery and they called me to say Isaac was just out and did I want to come in. I did. He was crying a little when I came in and he had a jelco in one hand and some blood on him. I felt heaps emotional. They carried him out to a lounge that I sat on. Isaac became really aggitated and cried hysterically for about 50 mins. I could not stop him. It was heart breaking. I felt like crying too. He has a phobia about bandaides and of course he had the jeloc/IV access in and he was shaking that about and kicking and all sorts. He also was bothered by the name band on his leg and got so upset. Eventually I asked that they take the IV access out even though he had not eaten or drunk yet and cut the name band off. It was about 50 mins after that he calmed down and then we snuggled but I found that 50 mins of him being really upset rather exhausting and emotional. I wanted to break down and cry. I didn't want Isaac to see me cry.

Anyway, his tooth looks lovely. They cut his mild tongue tie too. He doesn't appear to remember the upset that he had. I think he gets really aggitated like I do after an anaesthetic. I know all children do but his was SO long. It really took time for them to understand that he is honestly freaked out by things like bandaides and anything stuck to his skin.

I am exhausted tonight and glad that it is all over. Now I need to catch up on some sleep and get some rest again because I am beat!

Alan is well. The changes with FA Australia are very exciting.

Ok, I will finish for now. Thanks for checking up on us!
Love Charisse

Oh Dear....

Oh Dear,

that is what I feel like saying....and a big *SIGH* accompanied with it.

Isaac had tonsilitis. We took him to the doctor on Thursday and he had ulcers in his mouth and some puss and redness by his tonsil. So he is on antibiotic. Not long after beginning that he broke out with a couple of nasty ulcers on his bottom lip and that is all swollen too. My little boy is not one happy chappy. He has been waking up frequently during the night and whinning a lot. Today, it has felt like he has cried all day. I have a headache. Sometimes crying really gets at you, especially the whinning that goes along with it. He has not been able to do one thing today without breaking down. He is now in bed and I am glad because both Alan and I were starting to feel crazy while he has been crying and whinning. We have not been able to brush his teeth so are trying to do salt washes for his mouth care...very hard to do with a 4 1/2 year old who doesn't want a bar of it. That has been hard. We have needed to wipe over his broken tooth with a salt water tissue as well. He has swollen gums too. I know dear Alan has been dealing a lot with all the physical stuff with Isaac because it still exhausts me too much to do too much. Make sense? I hope Isaac sleeps well this afternoon.

I got to church last Sunday night for the worship. It was lovely. I must be heaps sensitive to perfume right now. I almost fainted at the church because of the ladies walking past me with perfume. We will hopefully get back for the worship again tonight.

Alan's brithday dinner was good. So many people. If you were there and are reading this...thank you for coming. I handled the night ok except when it hit 9pm. I had to ask Alan to help me on the floor in the corner because I was going to faint and throw up. I ended up throwing up a little there...just part of the exhaustion and the recovery from pneumonia. Mum and dad took me home earlier than Alan and then after everyone left again at home...I threw up again. I couldn't fall asleep until 3am...so I was so tired and slept the next day until 3.45pm!

Today I am still recovering from that party.

OK, I am going to go and sit down while Isaac is asleep and enjoy the quiet.

Thanks for checking up on me!
Love Charisse

Blood Results This Week

Hello All,

I have been feeling a little better the last 2 days. I have managed to have a shower without collapsing afterwards. I have still puffed a bit but much less than I was at the beginning of the week. I still have to have a good rest after the shower before doing much else but it is such a relief to be able to complete my shower without much drama.

At the beginning of the week I felt so weak in the shower. I have been sitting down on a chair. Once I got in the shower I felt like I could not get out again and then I would start to cry. It really discouraged me.

Today I have been shaky but still feeling a bit better and i think I am sleeping better at night too. Yesterday I gave Isaac a bath for the first time in 4 weeks! It was a bit puffing and mum took over after a while. I find drying him TOTALLY exhausting but I washed his hair and helped him learn to wash himself as well. The fact that I ran the water and did the majority of his bath except for drying and dressing (ok that is a lot to do) is an accomplishment. I have to look at the small accomplishments and congratulate myself otherwise I get too upset with myself.

Yesterday I managed to get to my specialist appointment for blood and a follow up an hour away. This is a GREAT accomplishment and I didn't throw up on the way. I tend to have car sickness right now and I can't handle trips. I either have to stop many times to get air or throw up or break out in sweats. I made it to the "cancer center" withouth too many dramas at all. So I handled a big outing which was good.

Blood. Last week I reported on my results and was really upset about my counts. What a difference a week makes! I had bloods yesterday and my haemaglobin has gone up from 98 (9.8) to 126 (12.6) which is in the normal range. I am usually about 140 (14) but I am really happy with this increase. May be that is why I feel a little better....or may be I am just recovering well. Actually the doctor says I am doing really well for someone who has FA. Those are not the only good results. Last week my platelet count was reduced to 38 000 and this week it has gone up to 65 000.....just in a week. My marrow is working very hard though. My MCV which shows how are your marrow is working...is usually in range ata 90 (normal imbetween 80 and 100) and this week is up at 103...so my marrow is obviously working hard for me. I usually am in range. Although with good results there are always the disappointing ones. I am waiting for the haematologist to talk properly about my neutrophils this week as they were 1000 last week and are only 100 (0.1) this week. Amazing how things change in a week. I did catch an extra cold from Isaac this week and I think that my marrow has taken such a hit with the pneumonia that the neutrophils reacted by reducing to only 100...a little scary but I will watch who I go near and what I eat while they are this low. I am inclined to want to have a test in a couple of days to see that it has gone up and I feel a bit safer. I have never been that low before! Not that I know of...so that scares me a bit...but look at my haemaglobin and platelets! They have gone up...on there way up. I must remember that in this recovery stage the marrow is building up strength and can go either way with results...down or up quite dramatically and not get myself too upset with huge change.

I am a little concerned about my liver. My GGT ezyme which usually sits at 1000 for me and that is really high...normal between 5 and 35...yep, I sit very high as a normal for me.....but have risen to 3917! Now that is high. So we are waiting to speak with my liver specialist to make sure that we don't have to be too worried. I know that high liver enzymes can cause nausea and I have had heaps of it. So we will check if this is a worry. As I said I had a liver ultrasound within 2 weeks ago and that was normal...so this could just be a later reaction from my liver as to how badly my body got hit.

Anyway, I am not so open with my counts but am feeling a little more comfortable sharing right now.

Isaac has been a little unwell. I don't know if you remember that he chipped his tooth...actually the enamel chipped off it and you cannot notice it but the dentist said he needed to have it fixed under a general a couple of months ago. They need to cap it to make sure that it doesn't get sore and infected. Well, Isaac has been booked for next Friday to have this done but he has been having high temperatures and crying and complaining of his teeth and his mouth. I also think he has a small ulcer on his tongue. He gum around his tooth is definitely swollen...so I am glad that he is having it done only next week because I don't want huge problems with it. I am suspecting the tooth is playing a role in the temperatures and unwellness because I can't see anything else. SO tomorrow he has an appointment with the GP to have his mouth checked. Check there is no abcesses or infection that needs to be dealt with ....also check his ears and mouth and stuff to make sure we are not missing something with these temperatures.

Isaac had a friend over today and really enjoyed the play after the panadol worked and his fever broke. He was back to normal...amazing! My friend is the mum of this child and we had a nice catch up time. I had not seen her since a couple of days before I was admitted into hospital. It is nice to be able to chat with a girlfriend.

Tomorrow my sister is coming around to be with me in the afternoon and help with Isaac once our nanny has gone home. Our nanny was unable to stay the extra hours to make sure I am ok for the last couple of hourse of the day before Alan gets home from work. We are not taking chances in leaving me by myself with Isaac at the moment while I am so tired and recovering. Would not be a wise move. We are trying to give me as much rest as possible.

On Friday night is Alan's 30th birthday dinner at a restaurant. It is going to be great. I am saving myself for it and trying to get so much rest in. As it is I may only be able to sit there and try not to get too carried away..I may not be able to endure the whole night but this is Alan's special night and I want to be a part of it. We ordered the cake today.

Well, this is a long post and I better go before I bore you all with it.

Thanks for checking up on me!
Love Charisse

Feeling Down

Hi,

I am feeling a bit down today. I seem to have one good day, one off day and today is the off day. I dislike how I feel and get very down when I am puffing and feeling faint as I even get ready in the morning and so I had a "melt down" today and was crying about it. I think that the FA kids are so brave when they have low haemaglobins and have lots happen to them. As a child, I had more of a carefree attitude even though I had lots of doctor's appointments. As an adult, it doesn't feel as carefree. You worry about every little thing and get really discouraged very easily. What I really notice is the difference in iron levels and how that is affecting me and it is a shock to my system and emotions. Other days I feel brighter, emotionally. Today I just feel down. I cannot wait until the oral fungal infection is gone either because it literally feels like I have a rock in my throat and I gag whenever I do something. That is miserable. I really admire kids like Nicholas Boggs who have so much to put up with but have a smile on their face most of the time. I know, as a human being, he would feel emotions as well...but he is such a trooper. Happy Birthday Nicholas! It is his birthday on the 10th! Be sure to wish him a Happy Birthday.

www.caringbridge.org/va/nicholas.e.boggs

This is his link

Anyway, I just needed to write some of my feelings down. I wonder if some iron tablets would help me..just a low dose. We will ring the specialist tomorrow to check that all is going well. I know I only see him on Tuesday but sometimes there are some important things to ask on the phone before you see them and Alan will be back at work on Tuesday so I want him to be able to ask some things as well. Mum will be coming to be with me on Tuesday. It will feel strange without Alan there that day.

So tonight we are trying to get to church for some worship. I have not been at church for many weeks because of sickness. Have no energy to get there in the morning and I know that around 5pm I will be very tired as well but I just want to be able to go for some worship and feel fulfilled again. We won't stay the whole service because of my energy levels but it will be nice. I am trying to do nothing at all today so I can get there.

Ok, I am going to have some late lunch.
Love ya all,
Charisse

Results

Hello All,

got blood results today and I am a little disappointed. I suppose it is good that they have not really changed at all. Haem 98 (9.8) still and platelets still about 38 000. It is so weird having these low counts and I know I am impatient for them to recover from being really sick. My haem was 140 (14) before the pneumonia. No wonder I feel tired on top of just recovering.

Oh well, wait til next weeks bloods again to see if anything has gone up again.
At least bilirubin is still steadily coming down and my eyes are not jaundice (yellow) anymore. Still a little ways to go until it reaches normal though.

Liver results have started to go back up to "my normal". Amazing how when I was sick they went down to the normal "normal" and then as I have gotten well they have gone back up to my disgustingly "high normal" but I feel a better with it up there...weird. Liver ultrasound shows no change and that my liver is just being my liver. So nothing to be worried about at the moment.

Ok, got to go.
Love Charisse

New Template

Hi!! This is Teresa sneaking a little entry on Charisse's site;-) hehe...I'm doing her template and am adjusting this entry because she wanted it changed. So, hi Charisse! We miss you and are so glad you are home from the hospital. Feel better soon and know how special you are to everyone.

Love,
Teresa

Alan's birthday/ My appointment

Hello People,

well today I had an apppointment with my specialist. I had bloods but will need to get the results on Friday. It is a private practice and hospital and I had some hiccups along the way today and got my bloods done too late...hehe.

I woke up this morning with a sore mouth and throat and looked into my mouth and there are white yucky stuff....oh dear...oral fungal infection. Doctor confirmed this and so I am taking acidophilus and Nilstat...anti fungal (which I was already on). However, the antibiotics I had with IV and oral have been so strong and my system weak so it was bound to happen. The infection is gone. There is just a little bit of fluid still on the lung and I am SO exhausted still! I hate this lack of energy. Today it made me feel so sick that I threw up my breakfast! That was horrible. And then I said, "Happy Birthday Alan" sometime after the event. I felt so bad throwing up on his birthday.

Anyway, so I wanted to tell you all that it is Alan's birthday today...the 5th September and he is 30 years old! It has been heaps hard on the family with the sickness and I wanted Alan to feel special....SO I was wondering if some people could send him a birthday message to his email.

This is his email:

alan@fanconi.org.au


So please leave him a message if you have the time. You are great with leaving messages for me and I thank you for that.

I also want to honour my brother, Shannon, who had FA and died in 1994, October. It was his birthday on the 1st September and if he was alive...he would have been 27 years old. I miss him heaps.

Thanks for checking up on me guys. I will update with results when I get them.
Love Charisse
Happy Birthday Alan!!!!!

Home a Couple of Days

Hello People,
I appreciate all who are showing support. I have been quite lonely and feeling quite upset. I can't wait until I am well again. I honestly have never felt this unwell before. I mean...may be when I was 17 and had kidney failure from an allergy to quinine and that made my counts drop to hardly anything.....BUT....since then, I don't remember ever being so unwell and so tired and exhausted. Having a shower makes me puffed and today I felt like I was going to throw up after getting out of bed. I ended up sleeping until 11am this morning...was exhausted from the shower and slept from 2pm til 5pm this afternoon. I am SO tired and feel awful all the time and I hate it. I felt teary and cried today because I would love to go out and visit friends but I feel sick in the car and I feel lonely. I honestly feel like no one understands how I feel...I know they probably do but I hate this. How many weeks am I going to be recovering. It is frustrating that this is something caused by sickness and not an elective surgery. I have to tell myself this is only the first week of recovery and that my house is bigger than my hospital room and I didn't have my son, Isaac, around while in hospital so I rested more and here I have him around and he is constantly active even though I am trying to do nothing. Alan is home with me but it is just more active being at home than hospital. I know it is important because it will make me stronger. I need the exercise...it is not even real exercise. I can't believe how pneumonia does this to you. I have only 3 more days left of the oral antibiotics. The infection should be gone. The fluid may take a little longer to go and the energy levels will take longer to come up. On Wednesday I have an appointment with my specialist at the hospital to do my counts and have a check up and all that. I hope my counts have come up higher. It scared me to have only 20 000 platelets. I have never been that low. Oh...except for when I had kidney failure when I was 17...they were knocked out from 150 000 to 11 000 and I had to have transufion. Now I am a proper adult and fully understand what is going on! My platelets had come up to 39 000 just when I left hospital so I hope they are higher again this week. It would be nice to see it recover. My Haemaglobin is usually at 14 (or 140) and dropped to 9.5 (95) while I was in hospital. I have never been there before either. My count came up to 9.8 (98) the day I left hospital so I really hope it is up a bit more this week but I know that haemaglobin can take forever to recover. What is weird is that my liver results that have always been high with enzymes were knocked down when I had pneumonia but the bilirubin was put up and I was jaundice. This is really weird that my counts went down towards normal. Guess what..the doctors do not understand but as I recover my liver counts are back up to where they usually are and the bilirubin coming down, reducing jaundice. It is like my normal counts for liver are just high and when I get sick they reduce to normal and when I am well they go back up where they have been for years and I feel more well. Doctors are amazed how strange that it.

Anyway, I really should go. My back is sore from the computer. Oh Isaac was back at preschool today which was good for him. He only goes until 1130am but it was good for him to be around children again even though he felt upset about it this morning. Alan stayed with him for a while to make sure he fitted in again and we made sure he knew mummy would be home when he got home. That made all the difference.
I will update soon again.
Love Charisse

Home Today

Hello People,
I just got home from hospital today and am exhausted already. Yesterday they started me on strong oral antibiotics while I finished the IV course and it was so strong...I had a bad day of throwing up and feeling awful...so they changed my oral again to another strong one which I think makes me feel a little lousey but not as bad.

I still have some fluid on my left lung, but the infection is clearing up. I have not had a temperature for at least 3 days. I have felt a little better and my appetite is slowly..very slowly coming back...I have been seeing the dietition and have some nutritious things that I took home to help me get back on top of things. I am on the same pain protocol that I was at hospital and we take my temperature regularly...if anything changes we have to go back in pronto...we cannot have me being sick like I was last week when I nearly died...it was serious.

Isaac is really excited to have me home. We have to remind him that I need to have rests but he is excited and fell asleep very early in his own bed for the first time in 2 weeks....knowing that mummy is safe at home and that the next week Alan will have off to take care of us. We are looking into other home help to help me recover as well.

I have to take 12 weeks off of work. I still have that surgery coming up and need to get better for that....I know it will be a long recovery. I was very upset that my counts were knocked out. I never had bad haemagobin but that was knocked out too so I am anaemic and tired. The Goji Juice I take does help though.

I wanted to thank you all for praying for me and leaving messages of support..it has been greatly needed for Alan as well as myself. Please keep praying...this journey of recovery is long and pneumonia is not good for an FA patient...please keep offering your support. I realised how many people care for our family and I am blessed.

Well I am tired and am going to rest. Thank you all....please keep checking for updates. I will be having weekly follow ups with my doctor and blood tests to check my marrow is recovering and if I need help with transfusions. Thanks ....I will fight on.
I love you all.
Charisse

Update From Hospital again

Hi Guys,

I am still in hospital and have felt very emotional when Isaac comes to visit me. He perks up when he sees me and gets excited saying "mummy you are better" and I have to explain that I am almlost better but that I have an infection here in the chest that is not better yet; and mummmy can not come home yet. He gets a big bottom lip and tears swell up and I feel so bad. He has been having some other things that show his worry and anxiety over his mummma.

So today I had a liver / abdominal ultrasound. All came back good but the ultrasound showed still fluid on my lung and so ther antibiotic (IV) must continue to at least Friday and then all will be re-evaluated and then I may be able to go home with a PICC-line in or have just oral antibiotics with weekly follow ups and blood tests....counts have been knocked really low and feel scared about it...right now bloods are taken daily or every second day. I was told today to expect my recovery of my counts and pneumonia to be between 6-12 weeks and that it will be a while...we had to cancel our holdiay...i am heaps disappointed.

It was nice to have mum here today and Darren and Angela visit tonight and Liesl my sister take care of Isaac today. Thanks to our friends and families, and nanny/close friend. Who have been supporting us so much. Densie (nanna)... I think about you a lot and are hoping you are really having a fun time overseas..Love you.

I know that there is a purpose for everything, and God will work all things out for good some how... so keep trusting in Him... I will write more when I am less tired.

Love charisse.

Still In hospital...plodding long

Hello All, Sorry for the late update.

I was supposed to come home on Saturday but the pneumonia flared up. I changed from IV antibiotics to oral at the end of last week, but started to get worse again over the weekend, so they now have me back on a new course of IV antibiotics.

Unfortunately, this means my holiday is cancelled this week, and means i'll be in hospital for the rest of this week with the option to have home-nursing with a PICC line rather than stay in hospital the whole time.

I'm still a little jaundice (yellow eyes), and ankles are swallen (maybe due to my liver being affected, plus all the fluids i've been given). I'm having a liver ultrasound tomorrow, and have given a urin sample to check the status of my kidneys.

i have not enjoyed my week--there's been things which have made me anxious, and i miss Isaac so much.

Thanks to my mum, dad, liesl, tim, darren & angela who have looked after isaac and taken care of our cats while we've been in hospital.


I still feel very lethargic and my energy levels are quite low. My counts (CBC, LFT) have all been disturbed by the pneumonia--the CBC knocked out, and will take a little time to recover.

Until next time... i'll update again soon. (with alan transcribing)

Love charisse.
xx

Update From Hospital

Hello all,

It is Charisse here again.

I have moved back from H.D.U (High-dependancy Unit) to the regular haemocology/oncology ward of which I am relieved.

I have felt very scared and traumatised by what has happened and have been crying lots. The pneumonia is heaps clearer and I am up, walking about, eating a little, and drinking more.

I have been doing physio exercises and going well. I also may be having some counselling due to trauma I've experienced while here, and other associated with my brother's death.

My feet are also quite swollen which is due to a lack of protein in my blood due to the infection and not eating as well. I have had an ultrasound on my legs to ensure there is no DVT (deep vein thrombosis). I have been visited by a dietician who is giving me special drinks and an exclusive menu to choose from for meals to help in this area.

I'm not entirely certin when I am going home, but expect sometime by the end of the week.

Thank you to all who have helped out, and those who have been praying.

Love Charisse
xx

still in hospital

Hi everybody,

Charisse went in hospital for her ear infection, and has been treated there since Sunday night. During the course of her stay, she started to get quite severe muscle pains around her ribs and back which were aggrivated by an on-going cough from previous weeks sickness.

Throughout Monday night and Tuesday Charisse has been on heavy pain-killers and sedatives to combat the muscle pain and give her some peace. However, during this time another infection started brewing (if not, was always there) and continued to worsen. Last night the doctor came in and checked her over, and diagnosed that she has developed pneumonia in the base of one of her lungs.

She has been catagorised as moderate-severe, primaryly due to the blood complications with Fanconi Anaemia.

She is resting well, and showing signs of improvement, but remains in the high-dependancy unit at the hospital.

She is doing well, showing signs of recovery. Please pray that this continues, and all her other blood-related issues also resolve.

Regards,
Alan (Charisse's husband)

hospital

Hi All,
have been very sick with the ear infection. Temps too high last night. Specialist wants me to come in for a couple of days of IV antibiotics...going in today.
Just wanted to let you know.
Love Charisse

Ear Infection

Hi Guys,
well the sick saga still continues. Alan is feeling much better but is still lethargic. Isaac is heaps better and seems to have his energy back but his horrible cough remains. In regards to the flu bug I feel much better but still lethargic....then yesterday morning I woke at 0530am with the worst ear ache (left ear) and stiff neck. I could not fall back asleep because of the pain. Went to infusion. Infusion went really well with the new product again and so far I have only had tremors. However, my specialist looked in my ear and he said it was all swollen and red and a nasty infection and all my lymph nodes are up from the ear to under my arm. My face is swollen on that side today and I am really sore. They gave me a big dose of IV fluclox while having infusion and I have an oral antibiotic to continue at home but I have to call if it shows no sign of improving after 48 hours. My neuts have been reasonable at 1000 but my body has taken such a knocking from all the continuous bugs that it is having trouble getting on top of things so they don't want me to be left to sort it out on my own. I have steroid drops for my ear too. I feel miserable.
I was so worried about being recovered for my surgery and prayed Thursday night that God would help it all work out and then Friday morning my gynae rang and said we had to put the surgery off for 3 weeks...all the anaethetists are not going to be there! What a relief. This gives me an extra 3 weeks to recover...and Isaac is too unwell with coughing stuff up to have his surgery this coming Friday. The only other date they offered me that was close was 2 days after my surgery and I couldn't be with him. I think it is not right that I am not with him. So now my surgery is put off an extra 3 weeks, Isaac's can be made for the 21st Sept and I can be with him. He can have extra time to recover from his fluey bug. So this is actually good and working out for us. Praise the Lord.
I am going to go now. Surely this sickness should all be over soon. I am so scared Isaac will get extra sick by sending him back to kindy. He has not had the flu shot this year. Doctors don't often reccomend it for the young ones here....say it is more important for adults and immunosuppressed and elderly. However the flu in Australia has been killing people....it always kills some people. However, it is particularly nasty. I had my flu shot ages ago. However, spoke to Isaac's doctor and he was concerned at how sick Isaac has been and so this week we are getting his flu shot. The flu season is expected to go into October and may be November...summer time this year and so it is not too late and that will protect him more at kindy.....and me. This new regime for kids has been recommended from now on with every year. I actually usually get Isaac immunised but I was slack with it this year. All the preschoolers are getting hit with it. No wonder Isaac can't seem to escape it. I feel bad. I should have done it when I had it. The doctor says it is still worth it.

Ok, gonna go...very sore. Please keep praying for us. We are supposed to be holidaying in the snow in a couple of weeks! This is all so crazy!

Love Charisse

Still Sick!

Hello All,
update on our family. Please keep praying..we need the prayer.
Well, I mentioned that Isaac was a bit brighter on that Sunday but I came down with the bug....we sent Isaac to preschool on Monday and he came home and crashed! He slept for 3 hours and then he went to bed early at night and he started with the horrible cough again and was washed out and began temperatures again that night. So he has been home, yet again, and still looks washed out. He will be home all week. It is such a horrible bug. I have been really sick with it and went to the GP on Tuesday and am on antibiotics. Felt so overwhelmed by it all that I burst out in tears at the doctors....because by then Alan also came down with it and has had fevers, amazing lethargy, coughs, aches and pains and so on. So mum came on Tuesday and looked after us all and Alan was in bed all day. Alan went to the doctor today and has been put on antibiotics...so Isaac, Alan and I are all on antibiotics and I am still in my Pj's and it is 1.30pm. We are all lazing at home because we are all sick. Isaac still has surgery next Friday. My infusion on Friday...I just pray Isaac is well by the weekend. This has knocked our family unit around and we all have felt like crying...hehe....I suppose that sounds funny...but we have not found it amusing.

So please keep praying for us.
Got to go...I should go have a bath or shower.
Love Charisse

Unbelievable! Prayer Please

Well on Thursday night Isaac came down sick with something...a virus and temperatures of about 38 degrees C (about 102 to 103 F) for 3 days! It is something that is going around preschool but I was not feeling impressed that Isaac was yet again sick...not that it was his fault at all...but if Isaac is sick then I usually get it. I nurse him so much while he is sick and because he had temperatures he was grizzly and upset and had no energy and just wanted cuddles...and then he would cough and I would get sprayed in the face because he is crying and everything at the same time. Something you expect as a mother, I know....but not something that we want right now. This family and my parents and sister and neice and parents-in-law and everyone has had these bugs..it has been unbelievable. My Aunty rang from Queensland tonight and she told me that everyone there (a different state) is coming down with this things too and how bad the bugs have been this winter! Well, Isaac woke up this morning quite bright and his temps have gone down...but guess who woke feeling horrible and like the life is sapped out or you? You guessed it! Me the mother! I woke up with a sore throat, coughing my head off and choking, and feeling a bit sweaty and no energy...nose completely blocked..even the medication is not helping that...and my nose just runs...and now it is so sore from blowing it! This is a real pain. However, I am glad Isaac is well and can go back to preschool tomorrow I hope this virus doesn't run rampage throughout my body for weeks...which can happen! Isaac's first full year at preschool and he is building his immunity to bugs so we were warned that he would bring many home which means I will be building my immunity also and catch them all...with a lower immunity I hold on to the virus longer and it really wacks me out. I feel a bit panicked about it all. We really need wholeness in this family. We need protection and lots of prayer. Please pray for us seriously. I have a big surgery in 6 weeks that I MUST be well for...I must be well for it and well to recover for it...this is very important and I ask that you would really seriously pray for me. Isaac has his surgery on the 24th August and he needs to be well for that as well...he needs to be well. Alan has started coughing tonight.....we rebuke it in the Name of Jesus...Alan needs to be well to look after us! And he needs to be well so he can do what he needs to do and I don't like it when he feels yucky. It is not nice for anyone.

I have been spending a lot of time with Jesus and my devotional...not has much as I should....but enough to be knowing where He is taking Isaac, Alan and I in our next step of life...and I know the Devil will want to stop the amazing things God has for us. I would love to call those who pray to pray for our protection against the things that the Devil tries to destroy. I know some people don't believe in this stuff. I know some people don't believe in the Devil and some don't believe Jesus is God.....but I believe Jesus is God and I believe that the Devil will try and oppose any miracle, anything good that Jesus is doing in our family. We have made HUGE decisions to do with our family and we are going ahead and we need protection.

I have had an extraordinary peace about these decisions.

I have some things I want to share with you that have impacted my life the last 3 months. These are some quotes from scripture.
Psalm 18: 30 " As for God, His way Is perfect"

This is an amazing verse. You know you try and do things the way doctors say or the way other human beings say but it is only until you spend time with the Almighty God do you realise that you need to do things His way and only His way and His timing is perfect, his way is perfect. I can say that this is what is happening in my life. The surgery and some other things....increased platelet count...did you know that every Thursday night my church group gets together to pray for healing and increased counts and favour on my life with what I do and success with what I can do and more....God is allowing me to reach out and grab those things that FA people don't think they can have....and giving me courage to do things that are despite transplant. God gives the people who choose transplant, courage to do that because it is His will. God gives me courage to do what is His will in my life...and he has given me extreme peace with it.

If you don't have FA and you are unhappy about your life. I want you to think about something. God's way is perfect....but you need to find His way not yours...and stop fighting to do everything your way and not His....don't be subborn with what you think....don't complain and yell at people about what you hatef doing. If God opens a door in your life for you to have a better thing then acknowledge it and thanks Him and grab it...don't let it go...and don't take it and complain bitterly about it. Families are important to us...children are important....but God is the most important and what He has for your life as an individual is important...I am not saying that doesn't include your kids....it does....one of the most wonderful ministries is being a mum and making sure your child knows you love her or him.....also that is bringing the child up right to not be selfish, to learn to do things on their own amongst the love....but never ever forget what God has for YOU as a person...never forget that you are important to Him and that He has a plan for YOU..........I needed to share this tonight and the right people read it and I hope God speaks from it.

Another verse is Psalm 18:18 " They confronted me in the day of my disaster, but the Lord was my support".
I have felt so confronted by FA, doctors, leukaemia and so on....by the box that we are put in but I will not be boxed. I will do what God wants for me and He is better than any of this....and if that includes taking risks to do what I feel is right...then so be it...but I think God has told me...."remember I am your support"....He is supporting me through what I am doing and I can feel Him lifting me up. I challenge you....do you feel Him lifting you up through your decisions and attitudes? Are you making the right decisions by God....not just convience...I am not talking to just FA families but other people too.......remember that God has a way...and his way is perfect...you cannot do it any other way and feel happy...what God tells you to do....whether you like it or not.....acknowledge it because when you do...the peace that flows!

I am happy with life right now....please pray for protection on our family as do what we believe God wants us to do.....
Love Charisse

Isaac

Hi All,
update on Isaac and his teeth. So he went to the dentist today..the paed....and he was so good. He let the guy look in his mouth and count his teeth and even have an x-ray without any complaint...I am so proud of him. The tooth he chipped only a couple of weeks ago has stripped the enamal off his tooth and is making the spongy part of the tooth vulnerable and so the tips of the nerves can be there and make him uncomfortable. He has been saying that the milk is too cold for him and all. So they want to build up that tooth to take the chip away and make it look normal again and put a protective layering around it as well. He also is slightly tongue tied so they are gonna snip it and cortisise it (sp?)...this will all be done under General Anasthetic and take about 45 mins at the most. They will let us hold him while he goes to sleep to make him feel more comfortable...which is good. It will be nice to have all this fixed! Isaac did well today and we are proud of him.
So that is my small update. Remember if you want to know what exciting new things are going on with us as a family and my latest surgery coming up refer to the other entry!
Love ya all,
Charisse

Interesting....

Hello All,

to give you all an update. The new IVIG product didn't give me many problems this time! YES! I didn't have headaches or flu symptoms or the pain I get with it. I had slight fatigue and tremors but I felt heaps better and didn't spend my week in tears like I have the last number of infusions. I really pray that all the infusions will be like this from now on. What a relief.

I am feeling much better. I still have a cough but it is going. The infection is gone I think. Bloods were improved this past time as well which I am really pleased about. Nuets were 1500! I am pleased with that.

I think I will still have that MRI but because I have an anaesthetic, I needed to wait until I am more well from the cough.

News! I am having surgery in about 6 weeks. It is a private issue for me but I thought I better let you know I am having the surgery. It is a gynae surgery but I wanted to let you know not to worry...no cancer or anything like that. It is a big surgery and I will take some time to recover. So please keep me in prayer. They will be cutting me. I will be in hospital for a week at the least and more if I need it. The date is 19th Sept. All steam ahead unless for some reason it gets cancelled. I will have a boost of platelets because the surgery requires really high platelets and mine are not in that range...as you know they dropped a bit since the blast count went up a little...but all is stable. My counts are very stable right now. Just don't have high enough for this surgery and they will be cutting me and I wanted to be safe. This would be the first time I have had platelets all my life....well I had them when I had a reaction to quinine when I was 17 years old...it wiped my count out from 150 000 to 2000...but since then I have never had one...not even when Isaac was born...my count boareded on 120 000 when I had Isaac. I am often private with my counts but my platelets are not that high anymore either but not low enough for needing platelets...except with huge procedures. So I am actually nervous about it. Isn't that strange...something I don't have to do and so I get scared about it...hmmm...so many kids and different people have to have it and I bet those kids are less scared than me.

Ok, so now to update on Isaac. He is well and back at kindy. We were supposed to meet with the paediatric dentist last Wed and we got the place mixed up and had to re-sechedule for this Wed. His tooth that was going black has lightened up again and is close to the normal colour of the other tooth! Praise the Lord! God answered my prayers with a little thing like this!

I am trying to work this week. Need to ring my hospital and put my name down for a nursing shift. I will be having a couple of months off work after the surgery and need to make myself known before then...get a doctor's note from my GP about it and probably should do all my drug calculations, manual handling and CPR certificates with the hospital before my surgery. Then when I am ready I can just go back and practice without having to do all this after.

Alan is good. Working as per usual. And he has Mon and Wed with me at home but I am sure that some of those days are mostly spent doing his private company. There are days that we choose to have only for us and go on an outing though. He is trying to set up his new company properly.

Well, I am gonna go. I am waiting to hear from 2 friends when they go into labour. Hehe...I may go visit one of them this afternoon while Alan is working....may be Isaac is settled asleep...I don't know...we will see.

Oh I am still knitting. It is very relaxing and I am a lot faster now. I am working on my 3rd square. I would be further along but the infusion trouble made it hard to knit with all that pain the last couple of months...I am doing more now though.

All of those families going to camp...I hope you all have a wonderful time! I will hopefully get to go another time!

Love you All,
Charisse