Thursday, September 17, 2015

September Blood Counts

My boy is growing like a weed!!!
We (being NOT me) had our quarterly trip to the vampires for blood counts, and they were good still!!
While I'd like to see them better, I know they are amazingly good for a FA kid, and we live to fight another day.

Height in May was 138.5cm and he is now 141.2cm = growth of 2.7cm in just over 4 months.
Weight in May was 31.3kg and he is now 32.0kg. Not much of a gain, but it is a gain!

Blood counts don't vary much -
Haemoglobin in January was 130, and yesterday was 129.
White Cell Count in Jan was 4.30, and yesterday was 5.40.
MCV in January was 106 and yesterday was 105 (this one I want to go DOWN to about 85, please..)
Neutrophils were (Jan)1.55, and yesterday showed a jump to 2.56.
Platelets were my not so nice one, but it's still a good number!
In January they were 137, and they were sitting at 121 yesterday. It's a drop, but nothing dramatic, and our haematologist was super happy to see the numbers holding so well.

There are some liver function results, but I need to research what they all mean before I can post them. Jasper has always had a funky liver.. the numbers have never been "right", and they have drained a lot of blood from him trying to figure out what the go is - then when they did that, all his counts were coming back into normal range for the first time in his life! These ones are a little off, so I will be doing some research.
I don't have a new cholesterol result for him yet, but I will make sure we get that done when he has bloods done just before Christmas.

There's a lot more to report, but not today ;)

Thanks for reading.

Saturday, May 2, 2015

Biopsy and Anzac Day

Can you believe we are almost at Molly's 5th birthday? We are currently on the eve of this momentous occasion, and actually, this time 5 years ago, I had seen my midwife, and was assured that this baby was not going anywhere and I needed to be booked in for an induction in 9 days time!!
BUT, this post is not about Molly...

The Wednesday after the Easter weekend saw Jasper and I at the hospital for his annual bone marrow biopsy..
He has grown about 3cm in 3 months and put on a bit of weight, so we were both pleased!
 The Same Day room we are usually in was too full on our day, so we got our own room.. well, we had to share with another little lad, but he was in after us, and gone before us, so basically we were alone!
xBox kept him occupied!
I can't find his blood counts right this minute.. but they had all dropped a bit. It never makes me happy, and I kind of freaked out, but then I think that he does have decent counts for a FA kid, just shit for him!
 As did Lego post biopsy!
 Dinner was pizza, as per his request.. we bought it as we didn't get home til after 5pm, so no time to make the bases!
 Our littlest lad also turned 2 just before Anzac Day!
 My parents are usually with us for Anzac Day, but there were in Darwin this year, so the kids and I went to a local Dawn Service, then to the Garden of Remembrance. This is my Granddads plaque. We put fresh poppies on it every year..

 Then we wander through the memorial grave stones. It is quite beautiful, peaceful, and sad.

 Playing at the park.. climbing trees and getting lost... (she could not find me, and told a lady that I was "sitting under some trees with a blue and green picnic blanket, and her name is Brooke Leah Miles". haha, she found me!)

 Jasper gets camera shy,,, so I had to Paparazzi snap at him,...

 Molly has taught herself how to tie her hair! clever clots!
Next report will be about Molly turning 5..


Monday, April 6, 2015

Brain Mutterings

I was awoken by Molly at 3.47am this morning.. it is becoming a pattern.. This morning was because her palm was itchy. She was not pacified by my saying it's good luck and she will come into a lot of money! A bandaid seemed to do the trick.
BUT it had woken Jasper up, so he ended up snuggled up in my bed.

As I looked at his little blonde head snuggled against me, and listened to his rhythmic breathing, I got to thinking..
Never a good thing to do at 4am!

This disease, this FA thing that has invaded our lives, it's nasty. It's vicious!
I picture all of the FA mums (and moms), and all the FA Adults - all in the same lottery. We all have a ticket, we just don't want our number to get called up.

It ain't any prize we want for our kids.

Life is fragile and fleeting at the best of times, but here I sit with my 11 1/2 year old, on the eve of his annual bone marrow biopsy, well, the fragile and fleeting part is almost too real.

I always tell people that Jasper is healthy, and there is nothing to worry about..
In reality, I worry. Constantly.
It might be a background thought, or it might be a focus for me.. It depends on the day and what is happening medically with him, but the worry and the thoughts are always there.

I could lose him any time. This disease rages inside, looking for a way to express itself. So far, we have been lucky. Decent blood counts, no changes in his marrow. Unfortunately, it seems it is only a matter of time before this changes.
The older he is does not mean the better it will be.

Bone Marrow Biopsy time always sends my head in to a spin. I know it will be ok (there is no alternative for me!), but I am still stuck with this dread in the pit of my gut. It doesn't go away until results come back in a few weeks time.

Just when you get comfortable and the headspace starts to clear, something else comes up to throw you for a loop. Someone passes away, someone is going into transplant, someone new is diagnosed and joins the FAmily.
While we are a special group, you don't want new people to join. You wouldn't wish this on anyone - not even your worst enemy.

Just remember, love those close to you. Love them with all you've got. It could all disappear in the blink of an eye.


Friday, April 3, 2015

Bits and Bobs, plus Easter Part One

The other weekend, Jasper's favourite AFL (Australian Rules Football) team was playing MY team in the pre-season competition.
What else was there to do, but buy some tickets and head on down for a Sunday night bit of fun!
My parents are supporters of the West Coast Eagles, like me, while Jasper is a traitor and barracks for the Dockers.

Allowing Molly to make up her own mind (cough cough), she is an Eagle too ;) 

Here's Molly in her oversize gurnsey with her Poppie.

 The lad in his Docker gear with his Grandy
 Here we go!!!

As it was a Sunday night game, we decided to leave at 3/4 time, because the game was pretty much over (the Eagles lost :( so that was a deciding factor too), and it was way past Molly's bed time.

Last weekend they had the club windup for Jasper's teeball ball club. All siblings were welcome to join in the fun of waterslides.
Here is Molly with her little mate, Harry:

 Pretty fancy trophy this year!
 My boy and I:

The last day of term had the Kindy and Pre-Primary kids do the Easter Hat Parade. Molly was proud as punch with hers!

Then Thursday night saw the kids and I at my parents for a pre-Easter celebration.
The kids have a tradition of sleeping over on the Thursday, or Good Friday for an Easter egg hunt - they know the Easter Bunny can't hide the eggs very well at home because of the dogs, so he does a proper thing at their house early...

We drank some beautiful wine! (This bottle was a gift from Jasper's teeball coach for me.)

 (this bottle is from a beautiful school mum and client of mine)
 I made a chocolate decadent Easter cake (it was super delicious!
 Poppie tried to steal Molly's cake
 and when that failed, he went after Jasper's!
 Molly went to bed, and the boys read a story while the girls drank some more wine!
 The morning saw new dressing gowns and slippers left at the table, and some notes from the Easter Bunny for a treasure hunt... Molly got to go first.
There were hints and she had to figure out where to go first!
 Down to the pool for the first hint..
 Then to something shiny and black
 she got the egg - super excited! there was MONEY hanging in the plant too! $1 coins on some tape!
 the next clue saw us up the stairs again and looking for something that is now hers, used to be Jasper's and before that, belonged to her mummy... (it took all of 2 seconds for her to know it was the old trike that mum and dad still have). I got distracted and forgot to take a photo, but there was more money and another big egg!!
 Then it was Jasper's turn.. He had to first decide if he believed in the Easter Bunny or not,,, he said he absolutely did, so out the front we went with his first clue! His first egg was hanging in the lemon tree that arches the entrance to the "secret garden".
 Hanging in another tree was another egg!
 Then it was about pirates and bunnies, and what they dig for....

 After a play at the park, it was swim time for madam:
 Then counting and re-counting the money!
 It has become a bit of a fierce competition with droughts. Jasper has never won against his Poppie, and it was a fierce competition! (we don't let them win because they are kids, it is about learning and thinking!)
Today, Jasper triumphed!!! It was awesome for him. He was pretty pleased with himself!
 Molly got frustrated waiting for her turn!
 Then it was on for Game 2!!
Molly isn't as strategic, so dad had to let a few easy moves go, but she is getting the hang of it, and did pretty ok!!

So, that is Good Friday for us. Now for some fish for dinner, and a chocolate free day tomorrow to get ready for Sunday!!!

Thanks for reading.
Happy Easter