January 31st Day -6

A little late on the blog today, I am at home (actually my sisters house) can't bring myself to go home without Ryan and Dave.  Kayla is with her mom this weekend and are busy with  ballet and plans for dinner. Ally is also settled at Nicole's so why take her out of her environment. Ryan is still doing great, I have checked in with Dave and he is still eating, had a great breakfast and lunch and is now sleeping.  He has his last does of Busafin tonight at 9 pm with a break tomorrow and then we start again on Monday with another cocktail of chemo.

They tell me to expect him to start feeling bad Thursday.

Ally and I spent a great day together, we took cloths to Dave at the hospital and then went to the mall to do a few errands..We saw our friend Leanne at visage and she gave us some lolly pops for Ryan. We then went to see my friend Tina, Sherry, Steve and Stevie where Ally had a ball with Bolder there dog and Maple there bird. Tina I think needs a nap as she was running after Ally..(right Tina)

Counts today:

WBC - 5.9

RBC 95

PLT - 40

Ryan is still playing and enjoying himself...He had a visitor today, Tania came down to see him, she was going to bring the girls but Sarah had a cough so she decided to leave the girls at home.

I am sure Ryan loved it as Lea gave him one of her Pokemon, Ryan's new favorite toy next to his dino's....

Our Child life specialist, ran around the hospital yesterday looking for anything to do with Dinos, and pokemons and she came back with a bucket of dino's and 3 pokemon movies.

Ryans was thrilled.

As a mother I am torn between where I am suppose to be, I know I need to be with Ryan but am missing Ally so much, she has not let me put her down since last night at 5 pm....

I guess the good thing is she will not remember this and with that being said Ryan may not remember either. So stay tunned I have not decided as to where I will be Friday night, with Ryan or with Ally. Her procedure is more invasive and the Dr's have told me she will need lots of TLC, and transplant is actually less invasive it is like a blood transfusion through his  IV.

I think Ally needs to know that she has done a great thing for her brother.

I will wait and see what each of them need on Friday and decide from there.

My parents and Tania will also be at the hospital on Friday, we will all tag team to make sure the 2 of them are well taken care.

Will post again tomorrow. Have a great weekend

The Hylands

January 30th - Day -7

Well we had a great night last night, Ryan is still a night owl( must take that after his father) adn an early riser( after his mother), but I did manage to get about 7 hours with a few interuptions.

Ryans is playing with a volunteer now and is having a ball...
Still no affects that are apparent from the Chemo. He is still his happy and funny self...

His dilantin medicine had to be inceased last night as the levels were low and they wanted to make sure he was not at risk for seizure...no affects there either...

He is getting really good at his DS now as he has lots of time to practice...
Leanne our child life representative has delivered alot of Pokemon movies for him to watch. He is thrilled.

Dave and I had a nice dinner in the room last night ...Shayne made some butter chicken and Paul made some pasta so we shared and it was so yummy.......thanks guys....

Bathtime is becoming a longer event in our lives...he has to wash all his toys....and we can not drain the water until it is done....

I am going home tonight to see Ally as I am missing her so much, I do however get to see her on Skype every night to send kisses her way.
I will be back on Sunday , so I guess it is a boy weekend for Ryan and Dave ( I guess that makes sense as it is Superbowl weekend) a guy thing.

Counts today :

WBC - 5.2
RBC - 91
Plt - 40

So another steady drop. He will get a platlets transfusion when he get down to about 20 on the PLT and a blood transfusion when he gets to around 70 on teh RBC. and at some point the white will be at 0, that is when he can not fight an infection and will be in isolation.

Ryan will be getting a visitor in a few minutes, his friend Trevor his here for treatment and will be coming to see him in the longue, so by for now

January 29th Day -8

Well Ryan was up till 11 pm last night, I could not keep my eyes open...He would cry if I turned out the lights...so I talked to Child Life this morning and they told me to keep things a normal as possible. So if he does something wrong, disapline him as best we can. They say if we dont when we get home it will be difficult for us...

Today has gone well so far...
He had a great breakfast and no reacation to the chemo yet...we do not except this until sometime next week...probably around day -3 from what we are hearing.

Mary sunshine the clown was in this morning and he loved it...He looks for her all the time. I have to admit she is very funny..

We are going down to Marnies lounge today at 1 p, after his lunch so he can play for an hour and then back up for a nap. Transplant unit has a special time for everything as all the places have to be cleaned and disinfected before the kids can go down.

Ryan told me this morning : we can go home now mommy I have had enough here. Imagine we are only on day 3....

Counts today are

WBC - 6.2
RBC - 94
Plt - remain the same at 45

I saw a Dr. yesterday that was in the ER (he is a hematologist specialist)back in November. He was comiong out of the transplant unit and said what are you doing here...So I told him we were in transplant. (the look on his face) he said no one around here tell us anything. He then asked but who is the doner, they found one that quick, I said my daughter (he just said wow) that is amazing. Then I told him about the blasts (0 in the bone marrow ) and he said you could not be in a better position...

So so far very positive, I try not to get to far ahead of myself.
Well Lunch is here so we are off for now.
:)

January 28th - Day -9

Ryan fell asleep last night at 7:50 pm, probably due to the dilantin.....he was talking funny in his sleep all night...telling me the meal train was coming (that is were we order all of his food from )

He started on his first dose of Chemo at 3 am and seemed to handle it fine....we had the second dose at 9 am this morning and he is still holding his own..Next dose 3pm and then 9pm and so on.until Saturday..His eyes look tired and his mood ( well lets just say it swings alot....) He is eating great so far so we are very lucky....weight on admission was 15.8 and yesterday it was 16.4 kg so a nice jump, today it was 16.1 so it is fluctuating.

Ryans theme song if you have not heard is: AINT NO MOUNTAIN HIGH ENOUGH, sings it all the time...

Counts today:

WBC - 5.2
RBC - 95
Plt- 45

So a gradual drop since yesterday...
It is now 1:40 and he is peacefully napping.

Dave and I can not thank everyone enough for all your support and well wishes..
Ryan is one lucky little boy to have so many who love him .

January 27th, 2009

Ryan fell asleep last night at 11 pm and was awake at 4 am with itchy feet, that is nothing new...
Could be a reaction to the Septra ( preventative med for chest infections) or jsut part of the disease.
He fell back asleep at 4:30 and then was up at 6:45. He had a great breakfast and they administered Dilantin through this IV at 11: am( this is an anti seizure medicine) one that is used before they start his first form of Chem ( Busulfan ) which can cause seizures. It has made him v ery sleepy, they say it feels to them like they are drunk, so he may be dizzy when he walks so we have to be careful...

...he will continue on the Dilantin by mouth at a low dose to maintain levels so they can prevent seizures from occuring. The Chemo start in the middle of the night tonight starting at 3am and runs for 2 hours and they administer it every 6 hours...so he get a 4 hour break between doses....so that will run until Saturday at 7pm and then he has a break on Sunday with only hydration.

His counts are still ok, they are dropping, Whote count is 5.9, Red counts 101 and platelets are 49. We will not see them go back up until transplant is over as the chemo will start to kill the cells...so he will need platelets and blood tranfusions regularly....

We again start on Monday on another Chemo (Cyclophosphamide) for 2 days and then I think another chemo for Wednesday and Thursday and then Friday is the day....DAY (0).
Ally will come in and have her bone marrow harvested and then to Ryan in the afternoon and we go into isolation...

They came around this morning to change the posters in the room , so I can not wait until he wakes ups and sees the dinosaurs....
He got the Toronto Raptors signatures yesterday and the author Robert Munch is here today reading to the kids...Sick Kids is truely an amazing place..

will post more tomorrow, hope everyone is well.

First Day in New Home

We are here, Ryan is in good form.

We have our proticol for the next 11 days....Wow alot of stuff to take in.
We have a room that has a bathroom for the next 10 days so that is great news as we thought we were going straight into isolation.

We have seen the doctors and they gave us our first piece of good news. Ryan has no blasts in his bone marrow, we were hoping for less than 20% and there is none...what this translates to is that he has no cancer cells (aka: like remission) Yeah....the doctor said that would be good for prognosis.( another Yeah)
We also found out that Ally is a match (blood type wise - o positive just like Ryan)

We know we have a long road ahead and we are praying every day that Ryans does well in the next 10 days and then well in transplant..I am sure that we will have some bumps along the way, but I remain hopeful that my little man beats this disease...
He is so cute, sunning around the hospital renaming all the staff...we have a person named Nick at the front desk and Ryan now calls him Scott....(funny)
Ryan being Ryan is a good thing, he has the fight and he also has the stubborness...I am hoping this works in his favour...

Signing off for now,

Suzie

All SET

Hi Everyone,

Ryan is still doing well.
We were at the hospital on Tuesday and Wednesday this week. We have been up at 5:30 each morning in preparation for our days....We have our set date for transplant...we move in on Monday the 26th of January.. Ryan had all his pre-tests done and all looks good from what we know. He had a minor procedure yesterday with sidation and he asked if he could put himself to sleep...pretty ironic he injected his medicine and fell asleep sitting up, eyes open...
This procedure was to check the amount of immature white cell( bad cells) they call them "blasts" he body has, they are wanting those at less than 20%. We ran into his Dr and he said that we are so luckly to be going to tranplant this soon, and that it usually takes 6 months....
He woke up and was as hyper as could be...not what you would expect from a sick little boy....

We are off on Sunday to the hair dresser to have a buzz cut...that is more for me as I dont think I can handle watching his beautiful hair fall out.

So we start everything on Monday and will most likely be in hospital for 3 months...hopefully Ryan will do well (cross fingers) and we will be out in 2.....all being well and Ryan being safe...

We are anxious as it is like it is all starting again, but this time with much more at risk (they have to tell you it all, every possibiltiy that could happen in transplant...something you never want to hear. but we are very lucky to have a great support system, friend family and many other people that are supporting us through this difficult journey and we are very fortunate and thankful for that..
The one thing I do know is that the cancer that Ryan is fighting can not get his spirit as he is a trooper and he is still smiling after all he has already been through...
I have tried to explain in child terms that we are going to hospital on Monday and it will be for a while and he said to me, you a mean a very long time mommy. He is truly amazing and we are so lucky to have him......

A friend of ours sent me an email yesterday stating please do me a favour this year. Keep your chin up and DONT EVER GIVE UP HOPE!!!!! Ally was a match for a reason.....Hope is what I have chosen to hold onto..He said good things happen in 3's and the first of the 3 was Ally being a match, now we are waiting for the other 2.....

Tobogganing Second Attempt

Ok, so yesterday was a better day at the hill it was only - 4 and we got in 10 runs...I have lots of pictures, just have not had the time to upload them.
Back to the hospital tomorrow for some pre tests before transplant...
Ryan is still up (it is now 11pm) so he will surely be tired in the morning...
He can not eat after 7:30 and we have to hit the road at 6:30 so we will be up early to start the day...hopefully platelets are holding and we will not have to have a transfusion tomorrow...fingers crossed...

Got to get this little monkey to bed...will post tomorrow once we are home .

Tobogganing

I am still amazed at the turn out from the blood drive...wow....thankyou to everyone who came out, to donate, donate there time, and support us through Ryan's Journey...

Last week we decided to get all the kids together and go tobogganing.. thinking the weather would be nice. Nice, -18 is not nice, it is really cold, but we had promised the kids so off we went..

We did about 3 runs down the hill and got back in the car and came home, we did however get some pictures.
Ryan was the only one who said please can we stay, I don't want to leave... I told him we would come back during the week when it was a bit warmer and he said but mommy it will be spring and all the snow will be melted..

He is doing great and we are enjoying our last 2 weeks before our tenative transplant date...
Dave and I are struggling, as we watch Ryan and realize that we have no idea what the future hold, only that we have to stay positive for our family.

Blood Doner Clinic in Ryan's Honor

It was a success...

142 pints of blood received, which translates to 426 people who could be saved.
1 unit of blood is broken up into 3 categories....platelets, plasma and red cells.
We had 50 new doners, so that is wonderful..from what our representative from Canadian blood services told us it is the largest new doners she has ever seen in one clinic....I encourage everyone to keep donating if you can as I did it for the first time and it felt great....I know that I am going to continue to do it for as long as I can....

Signing off for now.

Transplant consult.

Today was tough...alot of information ...things you never want to hear...
Looks like we are going in to hospital Jan 26th all being well and should be there for about 3 months...give or take a little...that was a shock we thought 6 weeks.

Ally had a hard time having her blood taken for some extra test needed.
Ryan as always talked to everyone and full of energy....glad to see as I know it will not last as the Dr's have told us he will become very ill once in transplant and that it will be a rough for about 3-4 weeks....so we are preparing for this...

Next 2 weeks, trying to make sure Ryan has lots of fun and enjoys his time as once we are admitted he will not see outside until the next season hits..

Will update soon

Hi Everyone,

We are back at sick kids tomorrow to do follow-up blood test to ensure Ryan platelets are stable. Tomorrow is also the day we find out exactly what to expect at transplant, what will happen to Ryan, they say it will be intense so we are anxious today, anticipating what we will hear tomorrow.
Ally has to come to this appointment for some blood work as well and an examination before transplant... What an amazing thing for her to be doing and she does not even understand that she has the ability to save her brothers life...what a story this will be one day, when she is old enough to understand.

Will keep you all posted..