Bone Marrow Biopsy/Aspiration DONE!!!

Hello All,
well Isaac has been attending school for 4 days in a row the last two weeks. Usually they have a Wednesday off as a rest day and go to school on Mon, Tuesday, Thurs and Friday. Wednesdays has now begun as school day...except the last 2 weeks we had public holidays in both weeks for Easter so he didn't end up going 5 days a week yet....still only 4 but 4 in a row without a rest. He has been really tired. Next week will be his first 5 day week at school without a rest! I wonder how he will go. I know they get used to it. Isaac came home from school complaining of a sore tummy. He actually was picked up by nanna while I was in a doctor's appointment and was given a chocolate biscuit and some milk....and then he said his tummy had been full and sore from it. He has had so much chocolate during Easter I wouldn't be surprised if he has a sore tummy! We limit the chocolate, obviously...BUT it is still there and he is still eating more than usual...I think we need to limit it more.

So yesterday I was making Isaac his dinner....fish fingers and some brocholi. I didn't do too much because he looked so wiped out. When I turned to tell him his dinner was ready, this is how I found him........check out the picture below......



He was fast asleep. I tried waking him. Understand it is 6pm and I have not done anything for him....not brushed his teeth or given him dinner...nanna bathed him for me so that was very nice...otherwise I didn't have him in his P.J's or anything but he was so tired he just fell asleep. This is just aside the kitchen on the floor, by the dinning room table...hehe. Because I have had the bone marrow biopsy and aspiration just a day and a half ago my backside hip was too sore to life him off the floor while supporting myself and my belly, where I had the operation, is strong...but not strong enough to support my whole weight because my hip is sore. No matter...I left him there until Alan turned up from work....either Alan or my visitors who I was having for dinner....Isaac's nanny who has worked with us for ages and her boyfriend. Alan turned up and help me change him into his P.J's and I decided that later I would feed him yogurt when he was semi awake....brush his teeth and stuff.......so off he went to bed at 6pm! hehe

Today he is heaps tired again and he slept right through to the morning....oh actually he moaned a lot last night and cried. He was still asleep. He would groan his legs hurt and he had a mouthful of yogurt but cried and didn't want anymore. Then at 1130pm I heard him crying and went in the room and he had thrown up all over his bed and was continuing to do so! So Alan cleaned up (good on ya Al!!!!) and I bathed Isaac from the stuff being all over him...we changed his bedding and re-brushed his teeth because he had a yucky taste from vomiting and he went back to bed.

Today he looks washed out and not himself. He doesn't have a temperature but he is so tired. He asked me to help him colour in something at about 4pm this afternoon so I sat there and did it....asked him if he wanted to snuggle me while I helped him and he nodded....10 mins later I look down and he is fast asleep on my chest! So Alan carried him to bed and he is now still asleep. I better wake him soon so he can have dinner and then go back to bed....he is obviously not himself...OR completely washed out from school...but I am sure he is not himself as he has not been eating today....not wanting stuff!

I had my bone marrow biopsy/aspiration on Wednesday just gone and have not got any results as of yet. Thank the Lord the biopsy is done...I hate them....but now I have to get the courage up to hear the results! However, I didn't really enjoy my biopsy experience this year. I usually am at the same private hospital every year but that closed...well the day surg did and is being re-done so I was sent to another one...but with the same doctor and anaesthetist which is a bonus for me. However, one of the nurses who admitted me there was an old collegue from my hospital where I work...I used to be a boss to her at work...one of the head Registered Nurses...and the admission didn't go too well. I won't explain it here but I became so anxious that I started crying and shaking AND walked out saying I wanted to go home and wasn't having the biopsy. There is a deeper reason to all this anxiety but one reason was that I had not disclosed anything to my collegue about my FA or pre-leukaemia and bad anxiety issues or patient issues and here I was being asked questions about myself from her and I don't really want her to know...it was too personal...and then when we needed something and she refused and I got anxious...I was SO embarrassed and wanted to go home...anyway...in the end the nurse co-ordinator came in and sent her out and Alan spoke with her and the thing that was the problem was fixed because she "didn't realise our circumstances" and I relaxed and I didn't have to finish the admission with this other person...it was a really awkward situation for me....some people you do not enclose personal things to when you are at work....working as a registered nurse..,.it is too personal and I was not comfortable with the situation...and had a lot of anxiety because of the biopsy and circumstances and FA and everything...and then when she said it won't help to talk to the co-ordinator...well Alan insisted and it DID help...we were able to do things the way we were suggesting because they didn't understand before! I didn't enjoy the situation or the embarrassment....I didn't enjoy being that anxious!

Yesterday I went and saw Dr Smiley at the hospital where I work. He is Isaac's paed but helps me out too...and he said that I shouldn't feel weird about what happened...as in how I feel because I have a disease that puts me through so many horrible procedures and stress...nurses and doctors need to try and decrease any unnecessary stress for me...I don't need to be going through stress that is unnecessary and he encouraged me that I have been so much better at controlling my anxiety!

Anyway, I got through the procedure and feel better than I usually feel. My platelets can go up and down dramatically ......really weird...so I wanted to avoid any bone bruising......so I asked for a pressure bandage and I think that helped. I have had bone bruising one year and it took months to clear up and was very painful!!! I feel much better this time. When I say my platelets can jump...I mean like be 50 000 in difference from one week to the other sometimes....so I don't assume they are high or low.....some people can jump like this. SO I would prefer to avoid the bone bruise if I can even though the platelets may be really high!

I did lap swimming for about an hour the day before my biopsy. I am trying to lap swim once a week to get fitter from the surgery I had and generally, be fitter. I swam for 1/2 hour constantly doing laps and then the last 1/2 hour I intermittently swam laps and rested and did walking through the pool and exercises. I was quite tired afterwards....I couldn't understand why I didn't fall asleep that night...I was awake until 6.45am that next morning..the morning of the biopsy. I must have been SO anxious that night...yet I felt calm....just anxious. I read my book for a lot of the night and was on the computer and stuff...and tried to sleep but just couldn't. I didn't want to have a huge anxiety attack about sleeping which is why I kept myself busy. I am sure my lack of sleep didn't help with my anxiety at the biopsy.....what a relief I went to sleep straight away that night!

I should find out initial results from the biopsy...the blast count and stuff (ooooohhhh...I am scared) this week sometime ....at least from one lab. The big transplant lab which is the one I usually trust....may be held up a bit. It has been VERY busy. Then the cytogenetics which is chrcomosome changes and stuff....will be in about 4 weeks because that part of the lab is backed up.....however, they will push through emergencies first. Since I have chosen not to treat this with transplant, so far...those going to transplant and looking at treating are first in line..which I do understand. The initial results will tell me if I am in more danger than I was before anyway.

So Please do pray!

I have so many other things to tell but I can't.........
We are packing to move in 3 weeks...mum gave me some photos of the new house which she had so I will upload them in my next update!
Love you all and thanks for the support.
Charisse

Moving Soon!

Hello Everyone,
if you missed out on the health update, it is in the post before this one.

We are moving house soon....only 3 or 4 weeks time. We will be renting out our current house which has a huge block of land...so we have only finished half the yard. We built this house and Alan and I have been real slow at getting it done. I am almost sad that it will look all finished and then we move out! I suppose I can enjoy the feeling for at least 3 to 4 more weeks. Alan and Isaac were in the yard today working to finish it. Isaac was helping at least. Uncle Darren (Alan's brother) and Aunty Angela came to help as well. Sorry I didn't get a picture of you Daz! Another time. They removed part of the fence in the corner for the trucks to come and dump the mulch and then they put the fence back up again! Then Alan continued to spread the mulch througout the rest of the yard. We do have a big patch of grass in the back yard but having too much grass is too much in this heat and drought! Our tenants may not water it all! You have already seen how yellow and dead our grass is in the front! The back grass is more presentable and different type of grass....so it has some green. Below is Alan spreading the mulch all around the yard. See where the fence is? It has to go all the way back there! That whole area has to be covered.

More pictures of Alan and Isaac spreading the large piles of mulch!

This is the part that is paved and our grass with Isaac's swings on it...this is a big area but I have not fitted the whole section in the camera!

The mulch now sread in this section.....sorry the afternoon sun is bright!

Alan and Isaac spreading the mulch!

Alan working in the yard! Tough Boy!

Isaac working in the yard!

Alan put in this path! It will go hard and compacted and be a path. This is before the mulch was delivered and it was the other day

Now here is our new house! All the way down there. Sorry, I can't show y0u pictures of the house's backyard and front yet. You see, we have a tenant in our house and it would be rude to post pictures here of the house while they still live here. I did have picture of the house from online when it was purchased but didn't save them and because a tenant went in the pictures have been taken down! So You will need to wait until we have moved in! Hehe........

Video of my Tough Boys, Tough Boys! Feel free to click on! It is cute.

Well that is all for now!

Love Ya,

Charisse

That Time of the Year!

Hello People,

before I talk about all the medical stuff I wanted to say that I went to a Christian Women's Conference this past weekend. I was HEAPS nervous about going and the week before got myself all worked up. Believe it or not, for the ALMOST 10 years that Alan and I have been married I have not gone anywhere without Alan. I worry about if something will happen to me with FA and feel vulnerable without Alan. I know that I would be fine but Alan knows my health really well so if I get into trouble with anything, including anxiety...he knows how to help me and make me feel calm. However, I took the plunge and went without Alan. Denise, Alan's mother, invited me and I really did have a wonderful weekend with her! Thanks Mum! She is like another mother to me. I get worried about how I will handle things like conferences because I do become tired but I handled it really well. I had some ulcers in my mouth by the end of the weekend but I got a LOT out of the weekend. Let me just say that when God tells you He has something for you, you must obey and go...wheverever He wants you to go...because He WILL bless you. God ministered to me greatly at this conference and I came back amazed at how God works....and it was very personal.

Besides that.....today I am not feeling well! It is so annoying! I have this ongoing issue with my throat. It feels really sore and then feels like I have a huge lump deep down and I can't swallow properly. I have had this issue a couple of years ago, extremely bad...I got a high temperature and couldn't swallow tablets and was very sick. Back then they did a scope to check for any cancer or masses but it came back clear...even the biopsies came back clear. No one can see down there, where it is sore. On top of that I have this other issue. An itchy throat, deep down and it makes my eyes water and me cough and splutter and choke. Now this part could be an allergy! So we are trying allergy tablets to see if that clears. I don't usually get an allergy, but as you all know, Australia has been SO hot and dry we have needed the air-conditioner on all the time and may be that is not helping...the dryness and stuff with my throat. I have also noticed that Isaac is complaining of a sore throat ocassionally and he is always clearing his throat...throughout this whole summer. When I have taken him to the doctor they can't see anything! However, this lump and sore throat goes on and off for most of the year...today I have had pain radiating to my right ear and my throat is real sore. It is Easter weekend so the doctor has started me on antibiotics so I don't become real sick while there are public holidays. However, we are making an appointment with the ENT and may have this scoped again to finally work out what is going on....is it fungal, allergy, repeated infections...is there something there and how can we deal with it. I feel quite distressed by it. The other thing I have noticed is that it happens when I am tired or run down....so what is happening there?

This week is a huge week for me. On Wednesday 26th March I have my annual bone marrow biopsy and I feel scared. Even though I know God is with me I feel frightened about waiting for results. I don't want to see any progression of the pre-leukaemia! This always has me worried. Please pray. This is a big test for me.

This is my first day picking up Isaac from school myself without any help. I have gotten here! I am healed enough in my incision to drive the car and move around with Isaac when he comes home. It is kind of nice to be in control! However, my nanny will be back next week to help me because it is the day after my biopsy and I will have some recovery time!

Well, I better get going. There is a breeze today and the weather is MUCH cooler....I have not got my air-con on...just the windows open! Ah....it is nice.

I better go and pick up these antibiotics and then I need to go and see someone and then get Isaac from school. Happy Easter everyone! Tomorrow is Good Friday for us. We have church in the morning and a women's conference at night!

Love you all,
Charisse

Crazy Family!

Hi All,

Crazy family, crazy weather...and what a crazy day! I thought I would take sometime to show you all what type of weather we are having in South Australia. I know that some people are showing their snow that they have had on their blogs and then I have been thinking about how dry and hot it has been here. Yesterday we reached a scorching hot temperature of 42 degrees celcius which is equivalent to 107.6 degrees Fahrenheit! It was really, really hot. Today was a littl cooler at 39 degrees celcius which is equivalent to 102.2 degrees Fahrenheit! It has been very hot! So I don't have any pictures of snow that is all nice and fluffy and cold looking. Ihave taken the liberty of taking some pictures of the outside of our house here so you can see how dead our grass is from the heat and the fact that we have had no rains for so long and are on quite strict water restrictions here in Australia. Check out the pictures below. I know the photos are not too clear or bright but you can see how dead the grass is! That is the front of our house! It is crazy. Our watering night is a Sunday night for about 2 hours...no sprinklers and it is crazy. It doesn't do anything to help with our very dead grass! So enjoy those photos...like I enjoy the photos of the snow....hehehe,......


So since today was such a hot day my family decided to head up to mum and dad's house because they have a pool. Also, tomorrow, my father, is off to Africa for 4 weeks by himself as a Pastor as a part of his Missions Ministry......so we were having our last get together before he leaves in the morning to go. These next pictures are of our family at mum and dads. Below is a picture of Isaac and Eliana admiring each other as soon as we walked in. They started giggling and laughing and playing with each other! It is so cute.


This is my sister, Liesl, and her daughter or my neice having a cuddle. Liesl is also crazy, just like the rest of us. She doesn't have FA.


The craziness comtinues as I introduce to you Liesl's husband, Tim, who always seems to have Isaac climbing all over him and why not Eliana as well! They are going for a ride on a donkey...Tim is the donkey or horsey and Isaac and Eliana are on for the ride. These are just some of the things we do to pass the time while our families are together....crazy!!!!! Sorry about the blurred photos!


Then it is time for the pool! Oh to cool down! I had my infusion last Friday and I have not been doing too badly with my reaction. Although I felt shaky today and have had headaches all day. My legs feel heavy and so do my arms. My throat and glands feel sore which is an immune response. Other areas of my body feel sore which make me think the hormonal time of the month is coming...hehe....otherwise this is my first time in the pool or immersed at all since my surgery about 6 weeks ago. I just floatedd a lot. I did some exercise but very gently. I am actually feeling sore from this swim today, even though I floated most of the time! I have decided now that I am on recovery I will start swimming once a week to get fix again and swimmung is gentle on me...so from now on I will be starting this routine. Did I tell you that I had an eye brow infection last week and that I needed to go on antibiotics. Well that seems to be clearing up nicely which is good!


Isaac making some strange and silly face while we were in the pool together. He is doing so well at swimming these days! I still need him to start regular swimming lessons!

This is Tim, my brother in law, an his daughter, Eliana, my niece...just cuddling. She was cold!

Just my family playing in the pool....mum, dad, Liesl, Alan, Isaac...all being crazy!

This is actually my sister, Liesl, and my husband, Alan, playing crazy and silly games together

This Is Alan being a crazy Australian, using his flippers as ears....hehe....what a strange one he is!

Please feel free to click on this video below. It shows how crazy my family can be. It is my mum, dad and son, Isaac mucking around in the pool together. Hehe...they are funny. My family has a lot of fun in the pool together and mucking around....enjoy....you may need to click twice!

So , all in all it was a good day. I feel exhausted from infusion but I am also a little teary about Dad being gone for 4 weeks. I love him so much and know mum is around. I just feel emotional tonight. Thanks for checking in on us tonight. I alwatys do appreciate it and I hope you enjoyed the photos! Hehe,.

Love you all,

Charisse

Plodding Along

Hello All,

well nothing too exciting going on...just plodding along. Last Friday I had an appointment with my Ob/Gynae doctor for a post-op appointment. It went well. I had been feeling better and going off pain meds and then the pain got worse again but I am told it is just post op pain and the tissues healing underneath the incision site...pulling and healing. The scar has been very dry and pealing and very tight so she said to massage sorbalene cream into it a couple of times a day. I have been doing that since then and already it is making a difference. Thick scab has been coming off and the dry skin is much better. I feel more supple already and it seems to be less painful moisturised. Hehe....my mother laughs at me but I cannot handle touching the incision site. Obviously just my mind...well it is sensitive and the nerve endings have been disrupted giving me a burning sore sensation. When I rub the cream in gently I feel a bit light headed! ha.....I have my mother's fainting genes! Sorry to spill the beans about you fainting lots mum! We are so alike! I have not had many pain meds today and am proud of it!

I have also started something natural to help with my hormonal imbalance that I was having trouble with. Hmmm...not sure if it is helping...it may be since I have not been breaking down in tears and not being able to stop crying. So that is positive. I also feel like I am coping better with Isaac in school. Coping better as in the concept that he is at school and not feeling completely lost. I am getting used to the routine of him finishing at 3.15pm. I still feel lonely at times but I am trying to make sure I have something to do each day to keep me busy. I am also taking my time in the morning, remembering that not having Isaac here will force me to rest and let myself heal from the operation! I am still not driving but I am thinking that after this week I will be able to drive! YAY!!!! I am going to find a thin piece of cushion or foam and put it under the seat bealt to protect me while I am driving. Who knows...I may feel weird with my first attempt because of how strange the incision feels.....might feel like fainting...haha! My belly from my belly button is all numb and strange feeling and I am told that this will last for a year because of how the nerves were disturbed. I don't remember feeling like this when Isaac was born. To do this operation they went through the same C-section scar that they used for Isaac...it is a little larger than the c-section scar. I must have had no feeling then as well but was probably too distracted with Isaac's very premature birth to think about it.

This Friday is my IVIG infusion again...4 weeks already. Please pray the reaction won't be so bad. I don't enjoy how I feel the week following IVIG.

Next Friday Alan's mum and I are off to a Christian Women's Conference for the weekend. I think it may be challenging for me but good for me. I am nervous and looking forward to it all in one! I am certainly not used to being without Alan! There are not many times at all where we have been apart.....except for the occasional hospital stay....even then the last hospital stay for my operation is the only one I have been alone. When I had pneumonia Alan stayed at the hospital with me on a bed. When I gave birth to Isaac, Alan also stayed on a bed with me in hospital.

Alan is not too well right now. He has a cold of some sort but the fact that he is tired and admitting he feels awful shows when he actually is sick. Otherwise, he doesn't let anything get him down physically.

In about one month Alan, Isaac and I will be moving house! We have a new house. We have had it for a while. I was not ready to move when we first got it. There is a story to how we got the house but I won't go into that. I am not looking forward to the physical moving. I have not even started packing! I have been too busy recovering but we will get some boxes and I will start packing! Carefully! We will be renting out our house that we live in now.

Well, I think that is all for now! Ha! I had a lot to talk about even though I said that there was not much happening! Thanks for reading my update and thanks for all the support!
Love Charisse