Friday, February 27, 2009

February 27- Day + 21

Ryan,

You had a hard time yesterday getting any food or drink down, but you managed to get 190 ml of milk in last night. Unfotunaltley it all came up about 2 hours later and you were complaining alot about tummy pain and wanted to lay very still.

We have watched all the Jurrasic Park movies now and we are watching the first one again now.

I woke up this morning and there was a big note on the board saying your whites were 0.7 and that you now have poly's 0.11, so we need 0.39 more to go until the dance.


Counts are :

WBC- 0.7
RBC- 89
PLT - 36 holding for now.

You have had some milk this morning, so it is a start and you had a few froot loops...so hopefully it will progress as the day goes on.

You should be in step down in a few day and we will see the nurses do there dance. I think Mommy and everyone we know will be doing the poly dance to.

Ryan, Daddy cute Ally's hair. I think that is a mommy daughter thing, he cute her bangs, which I have been growing for a long time. So now I have to start all over again. He told me we had this talk, but I do not recall telling him to cut them short, what I remember is, "please just cut the ones that are in her face and leave the rest"...What was he thinking. LOL

Ryan, can't wait to see what the next couple of days hold. Daddy and Mummy are on a high right now. I am sure that once day + 28 hits and they do your blood test we will start to stress again.
I have been told it take about 2 weeks to get the results, so we will be doing alot of praying and hoping again.

Love you,

M0mmy

Thursday, February 26, 2009

February 26th- Day + 20

Ryan,

You ate yesterday, we started with crakers, then moved on to penne pasta, a bite of a bannana and then at 9 pm last night you asked for pickles, but you were specific, they had to be long, big and juicy pickles.
Your daddy luckly was still downtown, he went to 4 stores and called me to say he could not find any...you were so upset. About 20 minutes later he called back and said he found a jar and was bringing up to you...your face was amazing. We saw the biggest smile.

Ashley, your nurse from the day before knew you liked dinosaurs, so she send up the Jurassic Park trilogy for you to watch. So we started with the first movie last night, I was amazed you stayed up to watch it as you were up so early yesterday morning. We had such a nice night.

All your food stayed down, so this is another hurdle I think we have passed.

Mary Sunshine will be in today to see you, and we will watch the second movie n teh jurassic park series.

Daddy is not coming down today, as he has a very busy day with work and he needs to make sure that he is back for Kayla and Ally. They are going to have dinner with Cameo, Nick, Charlotte and Gabriel. Ryan we need to remind daddy not to forget the wine and dessert. Hopefully he reads mommy's blog today.

Your counts are stable:

WBC- 0.5
RBC- 90
PLT -38

I have been told that the poly test gets done on Monday's, Wednesdays and Friday so that will be done tomorrowwe (hopefully there will be a few) Mommy has her fingers crossed...and I am sure everyone who reads the blog and is thinking of you has there's crossed to.
We are waiting for that poly dance...I think Mommy will join the nurses in this celebration. You will probably wonder what we are doing and why we look silly, dancing by your bed.
When you are older and read this you will understand why we are celebrating.

Wednesday, February 25, 2009

February 25th Day +19

Ryan,

Day 19 and you have asked to go home and have your birthday. The only problem with this is that you are not willing to eat or drink....
We continue to try and get you to eat something. Dr. Mira has reduced your TPN ( food suppliment) to try to get you stimulated to eat. You antibiotics have been discontinued, and your morphine reduced yet again to .41....Thing are looking good.

Counts today:

WBC - 0.5
RBC -86
PLT - 59 again you got a good bag of platelets yesterday.

Mommy went for lunch today with Karen and Sylvie and had a wonderful time. We laughed and laughed and had a fun time. Ryan they both have children just about your age and you will meet them all when we are out of here. Mommy needs a break some days and I know one day you will understand that when you read about your journey. You cried when I left and told me if I left you something would happen to you. Wow, how you get to my heart. How do you know how to hit me where it hurts...I felt really bad, but knew your were in good hands with your daddy. Sylvie, Karen I had a great time. Thank you so much. Dave is jeleous, he wishes he went.

Mary Sunshine came yesterday while you were sleeping and dropped of a pokemon book. how lucky you are. She will be back on Thursday to read it to you.

So now we need those poly to rise so you can leave your room for a little while..This will come in time. Your legs are starting to hurt, that is because you have been in bed for 3 weeks straigt. They have told me we can give you a shot of morphine if it gets really bad.

All in all, they tell me you are a text book case. no major issues yet and that you have the best Dr. in the hospital on your case..Ryan you are in good hands..

You are getting a little more bold every day, it must be a good sign, I know it must be so hard to be 31/2 and stuck in this little room.

Baby, it wont be to much longer, hang in there..
I love you so much,

Mommy
XOXXOXO

Tuesday, February 24, 2009

February 24th - Day + 18

Good Morning Ryan,

You are not in the greatest spirits this morning, probably the benadryl....You get sleeply with this and you feel asleep last night as your tummy was not feeling very well and you were sick.

You are in need of platelets this moring and a blood transfusion....double whammy.....
I guess it is a good thing that Mary Sunshine will be in this afternoon, that will surely cheer you up.

Ryan, it is Tanya and Carol Ann Birthday today, so we hope that they have a wonderful day....

Counts today:

WBC - 0.3 same as yesterday
RBC - 70
PLT - 21

Mommy is hoping that Mira come in today and tells us that we can take the 2 anitbiotics away.
She told us yesterday that if your white's went up or remained the same that we would, and if you spiked a fever again we can restart them.

The nurse told us this morning it is really cold outside, it is a good thing we dont have to go anywhere today and maybe by the time we are out of here we will have warmer weather.

Daddy picked up Kayla last night and then your cousin Ethan and took them for dinner last night, they had a great time.

Daddy will be down for a visit later and again tomorrow so mommy can have lunch with Karen and Sylvie. (looking forward to it)

Keep up the great work Ryan,
Love you,
Mommy

Monday, February 23, 2009

February 23rd - Day +17

Ryan,

We watched the Oscars last night together and I think I fell asleep before you did..
You were loving watching Walle and the Kung Fu Panda clips as well as the dancing....
I did not hear you in the night, not once....Krista your nurse told me you did not wake and that she changed you twice in the night, something I usually do..I was so tired.

When we woke this morning, we woke to Julie, one of you favorite nurses telling us your white count was at o.3.....it is moving up you are doing so well.

As today is Monday, all the team on Unit 8B get together to discuss all the children on the ward and then the Dr.s come in and visit with us and let us know what is going on.

Dr. Mira came in and had her thumbs up, saying you are doing amazing and she is so proud of you. If your counts tomorrow are the same or higher they will take you off of your antibiotics, as they absorb into the liver and kidneys making them work a bit harder.

You continue not to want to eat anything, but this is common as chemo can affect the way things taste...and I have been told that you may like things you did not before and may dislike things you really liked before.. usually it is the stronger tasting things that children like after transplant..

We are going to have some issues when we get home as you love Strawberries, blueberries and blackberries. and they have all been listed as things you can not have...as they are harder to wash and are sprayed with chemicals....but we will come up with some new things that you like..

I have asked our social worker to register you with childrens wish foundation, so they are in the process of doing that for you.. hopefully once we have the all clear we can go away (the five of us) once you are better and your immune system is stronger..(we will play this by ear)

Counts today:

WBC - 0.3
RBC- 81
PLT - 30

Hopefully you will be engrafted sometime next week and then it will be a matter of getting you eating and drinking enough that they feel confident you will not get dehydrated. If you can do this we may get a few day passes home from about 2pm- 9pm and then back to sleep and hydration and then discharge....this will all depend on how you are doing and as long as no complications arise....

Ryan we are getting there....

Mommy.

Sunday, February 22, 2009

February 22nd - Day + 16

Ryan, 

We are day +16 and you may be on the way to engraftment..
Daddy called this morning to tell me the nurse came in and said Whites are 0.2......I asked for the rest of the number and he had no clue. I think Daddy was just as anxious as mommy, but would never let on. the nurse has now told us we need to be looking for graft vs host...
as vibrant red rash on the palms of your hand and the soles of your feet...we want a small amount of this....and so very loose stools is a good sign aswell.
They do have the possibility of going back down tomorrow, but for today I am the happiest person ever. It's a start.
It is your aunt's birthday today and she wished for this last night when she blew out her candles. That is all she wanted for her special day. Nicole you got your wish.
There is something about the # 22 I think, for all of you who do not know, that is the number of the house where Nicole and I grew up in Montreal. It is also , the day of Nicole and Ally's birthdays....and now it is the day Ryan's counts came up higher than 0.1....

You had a great day yesterday, Daddy said that you are your old self again....Ryan you are doing great....Your liver test this morning are down significantly, another great sign...

Counts today: 

WBC - 0.2
RBC -76
PLT - 43

See you soon sweetheart....

Mommy

Saturday, February 21, 2009

February 21st - Day + 15

Ryan,

I left you last night and you were ok....I am so glad ...Daddy called me last night to tell me all the things you were saying....you are funny when you want to be.
I called and you were fast asleep by 9:30 pm and you slept until 8:30 am and you did not wake.

Your counts today :

WBC - o.1
RBC - 95
PLT - 17 so another transfusion scheduled for this morning...

I called you to see how you were doing and you seemed to sound a little down, probably all the medication.

I talked to your nurse today and we have dropped your morphine level from 1.22 to 1.0.
I asked her about the 0.1 white count and she told me it is the same as > 0.1 really....
she said that she knows we are anxious at this point but it is still early yet..so we continue to wait for your counts to rise.

Daddy tells me you are eating Froot loops and drinking... wonderful news and that they ran your liver counts again and they are down...everything seems to be on track Ryan.

I will be back at the hospital tomorrow to see you ....Keep up the great work sweetheart...we are all fighting right beside you ....Ally has done her job and now your body needs to let it work..

Ally and I went to the mall today to run soon erands and get you your Auntie Nicole a birthday gift and we stopped into say hello to our friend Leanne and we ended up staying for lunch....Thanks Leanne....it was fun....we then were heading home and decided to take a detour to Tim's to pick up coffee for Sherry and Steve..Happy Birthday Steve....

We were invited to Nicole's today to celebrate Chris's birthday but unfortunatley we could not make it as it is Auntie Nicole's birthday as well..Chris, Ryan says happy Birthday ....
Wow..February 22nd is a busy day for alot of people we know...
Happy Birthday to you all ....Enjoy.....Ryan can't wait to see you all ...hopefully it will be soon

On that note, we post again tomorrow....

Friday, February 20, 2009

February 20th - Day + 14

Ryan,

You were able to get down 75 ml of apple juice yesterday and 40 ml of ginger ale...You took a bite of a grape popsicle....good for you. I think it was a bit early to take in so much, because just after you finished the ginger ale you spat it all up....that is ok.....

You slept well last night ( 8 pm - 8 am ) with a small interuption saying you wanted to be sick....and it was a very small amount and you were back out in minutes...

Today, you have been grumpy and daddy came to visit and you were not very nice to him.
Daddy has left at your request and will be back later for the weekend.. Poor Daddy!!!!

Your counts today:

WBC - 0.1 - maybe on the rise....but could fall back down again tomorrow....crossing my fingers
RBC -78
PLT - 22

You have had your benadryl and your transfusion and you are still awake....I amazed as you usually fall back to sleep....
We have played Lego this morning, and built a house and a car...

Mira was in today already and said that your liver counts are up again, but that you are getting ride of all the fluid that they are pumping you with. So that is a good thing.
They still do not think that you have the aveno oculsive disease because you are not retaining any fluid you are actually in teh negatives..She also said that your poop has changed color and could be a sign of graft VS host....she said it is a bit early as the counts have not come up yet ...but they will keep an eye on it all...

You are smiling alot more this afternoon at your TV shows....which I am thrilled about ..your smile is so great and you are talking so much more ....

You are being a mommy's boy today, you want only me to be in the room, you have told all the nurses to leave and the Dr's not to talk to me ....

Ryan you said you would try to drink again for me today and you have kept down about 50 ml of apple juice so far today aswell....so I am pleased....as this will help us to go home faster as long as everything else stay in check ...

They are going to reduce you amount of Morphine as well as I do not think you need the higher dose...so we are taking you from 1.59 to 1.29......so another good thing.....

You really are amazing and I could not be any prouder of you, you have dealt with all of this so well, and have not really complained one bit...OK, maybe one bit, but not much more...and to be stuck in a room like you have been and still being so good...I love you.....

Mommy

Thursday, February 19, 2009

February 19th -Day +13 Second entry

Dr. has been in today and say that Ryan looks good...
The Ultrasound has come back and there is no sign of the Adveno Ocusual Disease...phew....
She said that once the bone marrow know where to go , it makes it's home there and then creates the new cells....
We think the mucositis is going away slowly, so it is possible that some of the cells have started to come up and have gone to fight the mucositis and have not hit the blood steam yet....so we wait....Mira, Ryan docotor is very calming....she make me feels so much better....she explains things in a way that makes sence and you can understand as a parent....Ryan really like her to..

Ryan has tried an orange popsicle for me thie morning, did not go very well...He played with it more than anything.

We also told him in order to go home, he will have to eat and drink again....so we started with trying to get him to swallow his own saliva, instead of spitting it out....it worked he is swallowing on his own...the only time I give him the bucket is if he has to throw up.....yeah Ryan ...you are doing so well.

He also had two sips of Apple Juice and swallowed it....Thank you Dave, you know how to get our son to do stuff....

I am going to order a whole tray of dinner tonight and see if he will eat something...easy things that slide down and we will let you all know how that goes tomorrow....

Have a good evening everyone...

February 19th - Day +13

Good Morning,

No new news to report....Ryan had a good night last night....Vomiited at 4 am ....very small amount and slept really well....

As the days go on, it get harder and harder as I have not seen a change in his counts....
You don't expect this change before day 14, so the closer you get the more anxious you feel...

Counts today are:

WBC- .0.1
RBC - 76
PLT - 43
Billirubin - 4 same as yesterday.....but the nurse said all the other numbers have come down...
So today they will be very strick on his fluids and how much they are giving...

His Magnisium is down so they will readjust this in his TPN (his food suppliment) to ensure his joints are ok.

Ryan is still sleeping and I have just gotten up...so I am heading the shower as they alway make us feel a bit better....

If there is any more news to post later in the day I will post again..

Wednesday, February 18, 2009

Success Story from sick kids that was in the news today ....

http://www.thestar.com/article/589098

Article about a teen who was not given long to live as she needed a double lung transplant....
Sick kids has a doctor that created a artifical lung that was used to keep this beautiful teen alive until a doner could be found....

Amazing, truly amazing.....and it just shows that miracles do happen and that we can not give up hope......

Have a good night everyone....

Febraury 18th - Day + 12

Ryan,

Today is a good day to be inside. It looks cold and it is snowing..
You had a rough night, yet again last night. Throwing up at 9 pm,11pm, 2am, 4am, you had some tummy and throat pain....They gave you a boast of Morphine on top of your running drip to keep you confortable...
Because of the vomiiting and the nasal discharge showing traces of blood, you had a platlete transfusion last night at 10pm.

Today your levels are:

WBC -0.1
RBC - 95
PLT - 77 that must have been some good platletes (biggest increase I have seen since the effects of the chemo)

The nurse was just in and told me that your Billirubin is up ( means your liver is working harder than it needs to) so they are sending up a tech to do an ultrasound, and they have measured your tummy....Of course I jumped the gun and freaked out (as I am a worrier by nature) so they came in to talk to me to tell me this happens and that it will probably be back to normal tomorrow...so I pray this is the case...

The Dr. came in just after that as I think the nurses asked her to come and talk to me ....she said higher billitubin could mean the starts of the counts coming up, or could be a problem with your liver working harder than it should. If this is the case they can not do much for it, a use of medication and less fluids to give your liver and kidneys a break....

Ryan you look good....you are playing Playdo and watching TV. you talked to you cousins in Ireland this morning and we read some of your dinosaur book...

Your friend John engrafted this morning and they are getting him on track now to send him home....Hooray John we are so happy for you....this is a day to celebrate...we are all thrillled for you and your mom is over the moon today..

Daddy and I took about an hour break to visit with Karen Gordon, Bill Carroll and his wife Sylvie Carroll..They have all spent there own time down at Sick Kids with there children, so they understand first hand what we are going through. I want to thank them so much for coming down to see us, it really meant alot to Dave and I...just to get out of the room for a little while and talk about everyday things, and to laugh was great....Karen I thought of another person you could put as your profile pic (instead of Clonney or Gere, what about Matthew McConaughey) just a thought.

Hailey thank you so much for the LIVE STRONG braclets...they are awesome..and yellow is Ryan's favorite colour. (he says it is a happy colour). Ryan will be wearing one by the end of the day...

At 3Pm the tech came in to do the ultrasound, will probably be a day or two for the results...
Just as I thought you were about to take a nap, Donna came in to do your central line, dressing change....you fought it and cried so they gave you Ativan ....to try to relax you...I left the room and it was a things seemed to go well....I guess maybe I should leave you with the pretty nurses and things will run a bit smoother.....note to self....

Again, thank you everyone for all the support that you have show us as a family, we really do appreciate it.

Ryan my sweet boy, you have touched the hearts of so many people and you have so many people wishes you well and praying for you every day...

Sleep well baby, I love you.
Mommy.

Tuesday, February 17, 2009

February 17th - Day + 11

I guess everyone is back at work today....Still looks sunny outside....
Ryan is talking today and has decided he likes my chair better than his bed, so I have put a clean sheet on it, and set him up there infront of the TV...

Cameo, we read his dinosaur encylopedia last night and he loved it...so I think we will continue to read a bit each night before he goes to sleep..

Ryan morphine was increased yesterday to 1.59, we started at a very low dose or .9, I aksed if he was getting alot of morphine and they tell me the dose is still quite low....so hopefully when we whene him off of it, it will be ok....He is having a hard time with the probe....they put it the childrens fingers when they are on Morphine( hospital policy) to monitor the heart rate....
He does not like this and keeps pulling it off....so the nurse of the day has to come in and put another one on.....

He keeps asking the nurses for pokers ( needles with blunt ends), bandaids and cleaning wipes...so he can pretend to give me poke and I have to say I have 5 bandaids on my hands right now...I am going to try and take it down to 2....

He is retaining some water now, so they are keeping an eye on that....so needless to say his weight is up....just a bit...

It is a waiting game....I think every morning this will be the day and they come in and tell me the whites are comihng up, but we are still below > .1 ...It is like watching water boil...until you walk away it does not boil.
So I think I will stop asking until they come in and do the dance....I have been told there is a poly dance that the nurses do, one the levels start to come up...

Mary Sunshine is here today, so something to look forward to....I might need to hire her to come to the house...he loves her so much ...I wonder if she does home visits....

As I am writting , Ryan just said I want to go home now mommy.....oh how I wish....maybe another good sign....he is ready to leave.....to bad the whites have not given us the same sign...

He will probably need a transfusion for platelets and blood tomorrow...

Levels today

WBC -> .1
RBC - 76
PLt - 32

Katheryn and Steven, children of 2 of the parents I have been close to while during our visit here..both got to go home for the day yesterday and then had to report back last night....
There counts are up and they are starting to eat and drink, so they will probably be going home later this week... Hooray, Hooray, Hooray, I bet they can not wait to be home and back to a normal routine....Ryan this will be us soon....

will post again tomororw...

Suzie

Monday, February 16, 2009

February 16th- Day + 10

Good Morning,

It looks sunny outside today. Ryan was sick right before bed last night but then had a really good night...he slept right though until 8:30 this morning..as for myself, it was a restless sleep. I tossed and turned and was up to change him a few times in the night...Woke at 7:30 this morning and watched Diane Lane and Richard Gere in Night in Rodanthe...Not to bad...

Ryan woke and again is spitting his saliva every few minutes...but in general is in good spirits and has spoken quite a bit this morning..I am happy to see this as I was starting to get a little to quiet around here..I was only hearing the sounds of Fred when he started to beep....

Ryan's counts's today:

WBC - > .1
RBC - 85
PLT -25

An order has been put in for his transfusion, so Benadryl again and he will most likely fall asleep..

Ryan was actually smiling for his cousin Sophie and his Auntie Geraldine. They called this morning on Skype to talk to him....He didn't say much, but he did poke his toungue out at them...maybe we are on our way to some better days and the numbers will start to come up soon...I am crossing my fingers, toes and anything else I can cross....

Dave and Ally are having breakfast with Nicole and the boys this morning...Dave went to the store this morning to get some grocceries and found out they were all closed.....

Honey, you live in Ontario, it is family day today.....I know, dates and times get away from you when you are confined to a little room for 4 days....Sorry babe, I should have reminded you last night....I can not help but laugh...Thank goodness for RABBA...24/7.........

For those of you in Ontario, Happy Family Day.
Hope everyone is having a nice day...

What is the weather like...is it warm out there today?

Sunday, February 15, 2009

February 15th - Day + 9

Today's blog is a little late....Just got back to the hospital. Had planned to come back tomorrow, but could not say away another night...Dave has left to go home and get some uninterupted sleep.

Ryan had another bad night last night. Alot of pain in his throat and tummy. His morphine has been increased by 20%. He is not talking and spitting up his mucus every few minutes...Poor little guy, but still he is not complaining. I just finished giving him a bath.

Overall he looks well to me....His eyes are a bit red, probably from lack of a full night's sleep and the drugs..

Counts today:

WBC - > 0.1
RBC 85
PLT -42

Before Dave left, I went downstairs to get something to eat...I ran into a lady and her daughter that we had met when we first got diagnosed back in November...This little girl taught Ryan how to ride his pole....much easier way to get around..I could not help but cry when she asked me how Ryan was and then told me that her daughter was cancer free for 2 month and she has relapsed and the cancer is back.. She said they were looking to get there life back in order, travel this summer etc. I pray that Megan gets better soon.

Many of the children that went to transplant a week before Ryan are going into step down and will soon be going home...This is also hard as you develop relationships with the parents as we are all going through the same thing and are hoping for the very best and we all try to stay so positive..

Well going to spend sometime with Ryan now...Will write again tomorrow.
Have a good night everyone...

Saturday, February 14, 2009

February 14th Day +8

Happy Valentine's Day! Hope everyone is having a wonderful day!
Dave I miss you and love you!

Yesterday continued to be bad for Ryan,  he had alot of pain in his mouth. He slept quite a bit, on and off..He was holding in all of his saliva and then pointing to spit it out....my poor little guy, what I would give for him not to have to feel this.

I drove home last night (left in rush hour) 5:30 will not ever do that again.  I made it to Milton at 7:30 what a drive....really it gave me to much time to think, and that lead to my personal cry time. Probably not a good thing to be doing while driving... 
I questioned why, why, why, why?  An Answer, Dave and I will never know.

Another bad night,Ryan was up vomitting and in alot of pain...Dave called me this morning to tell me Ryan's counts:

WBC -  0.1
RBC -85
PLT -25 after the transfusion yesterday.

The Dr.s decided to give him another transfusion today as they said they dropped so rapidly last time that they do not want to wait today....so again the Benadryl to prevent a reaction.

I tried calling Ryan on Skype this morning, and was able to see him, he would not talk ( his mouth is probably to sore) I miss his voice so much. 

Ryan has not talked in 2 days and has not had any thing to eat or drink for the same amout of time.

Hopefully, the counts will start to climb this week and the mucositis will start to subside.

Resting at home as Ally was sick in the night and I was not feeling good either...
It is a holiday on Monday ( Family Day ) so Dave may have to do another night, if I can not shake this run down feeling..

Going to mass in the morning at our Church with Ally, we are going to go and say a pray for Ryan, Tina and her parents will be joining us, Nicole and the boys might be coming to...  Prayers in numbers right?????

So, to everyone have a wonderful long weekend and I will post again tomorrow.

Suzie


Friday, February 13, 2009

February 12th, Day +7

Hey Everyone,

Ryan won Bingo yesterday and the Marlies hockey team were here, so as Ryan is in isolation they came up and delivered his toys to him and a signed poster of the Marlies hockey team. WAY TO GO RYAN.......

Dave was here last night and I think mostly everything went well...
When I got here this morning, Ryan was sleeping, drug enduced as his platelets fell in the night to 10 so he had his transfusion this morning ( with dose of Benadryl first to ensure he does not react) he has vomitted and has alot of pain in his tummy, mouth and thoat. I dont anticipate this going away any time soon. He is holding his mouth closed today and I have noticed it is filling up with Saliva..So I have now put a bowl in front of him to spit in to...He is not talking, just pointing.

His eyes are heavy, and look sleepy...his hair is almot gone....he is actually pulling it out himself and handing it to Dave or myself....Oh how my heart aches for him...I know I would not be as brave as what he has been....I am so very proud of him...

Last night, I had a hard time falling asleep, although I know that I need the break or I am not going to be any good to him, I could not help but miss him like crazy....I think Dave and I feel we do not want to miss even one minute with him....I saw Ally for a little while last night and she is doing great....her lower back looks fine, still the marks from the needles but she does not seem to be in any pain.

Ryan and I made his Valentine's card yesterday and a little gift for everyone on the floor yesterday and we delivered them today as we knew the hospital was celebrating Valentines today....so he has had lots of surprises... I stepped out for a few minutes today and when I came back, Ryan had a special delivery arrive...Thank you, Agatha, Derek, Maddy and James....

So our next thing to look forward to is the day he starts to engraft and then on day +28 they do a blood test to find out how many cells are Ally's and if any are Ryan's....so what we want to see is 100% Ally. Once his counts start coming up and his Poly's are 0.5 for more than 3 days we can move to step down and then we have to get him whened off the Morphine and stating to eat and drink again.....something I hear that can take alot of time because the children are so scared of it hurting when they try to eat of drink.

I will be going home tonight to see Ally and back on Monday morning, so Dave can spend some time with Ally and Kalya...

Happy Valentine's Day everyone....Enjoy....

Suzie

Thursday, February 12, 2009

February 12th- Day + 6

I would like to mention a few things before I start today's blog.

I would like to wish my bestest friend Tina a very HAPPY BIRTHDAY! Hope you are having a great day.

To Trish, Maggie, Shirley, Richard and my Mom and Dad, Dave and I would like to thank you for all your hard work in organizing yesterdays blood drive. I have been told that you had 116 pints of blood donated. That is another 348 people who can be helped. That is absolutely amazing...Thank you so much. We love you all.

To everyone who went to donate and couldn't, thank you, and to every one that could, thank you and to all the volunteers and nurses, thank you.

Ryan fell asleep last night at 11:45, tried to get him to go earlier but he just wouldn't and I have to pick my battles as we are in such a confined space, with no real routine. With that being said, we had a parent meeting yesterday, this is the first one I have attending, mostly because I was unsure of what they talked about and I did not want to get more upset than I already have been.

To my surprise it was nice, parents talked about what to expect when talking there children home, how to disipline our children on the unit. Some really good ideas came out of it..so I think I will go again next week...

Ryan's hair is falling out fast, this has made me very emotional, I knew it would happen, I even had his hair cut (brush cut) before we came in to lessen the effects to myself. I have realized it does not matter how short his hair is, it still comes out in batches... He woke this morning with hair in his face, on his pillow in his bed and he screamed...I have told him, it is ok and it will grow back.

We have made notes to our nurses, called I love my nurse because ( and the children have to fill out why) Ryan came up with, because they are pretty and they bring me pokemon stuff...so that is on the wall in the unit....we have also made Valentine bags...with stickers..Ryan did his all on his own, that is hanging outside his door...As I am going home today, I am going to pick up something small for each of the children on the ward to put in there bags.... We have already done there valentines cards....Theme :Kung Fu Panda...

Ryan woke up vomitting again this morning at 7:00 am and is very tired today.
His mouth looks swollen, and his lip are stuck in a pout like position, I think his mouth hurts as he had not said much today.
They have told me they will start a Morphine drip today to control his pain...He will also get his last dose of Methotrexate (chemo) to prevent to much graft vs host. This may make his mucositis worse.

Today, Mary Sunshine will be around and we have Bingo on TV at 2 pm...so that will occupy him for an hour or so, if he does not fall asleep first...

Counts today:

WBC - 0.1 up from > 0.1 this could mean the starts of engraftment or it may just fluctuate for a few day between 0.1 and >0.1.
RBC - 101 up from yesterday
PLT - 20 down again, expected.....they will not be transfusing as > 20 is when they transfuse unless and other indications, like bleeding gums, nose bleeds or any other form of a bleed.

I am so tired. This week has been very emtional and exhausting, but we knew this was going to happen and so far all as we say on the ward, if the Dr. say all of this is expected, then we are doing ok....

Tomorrow is Friday, I bet we are all looking forward to the weekend.

Hugs
XXXXXX

Wednesday, February 11, 2009

February 11 - DAy + 5

Today is Blood Doner clinic in Montreal. I am sure it will be a huge success. I know that Trish, Maggie and Shirly have worked so very hard on this...Thanks to you all, it means the world to us.

Dave picked Kayla up from school yesterday and then picked up Ally from my sisters so he could spend some time with them. Kayla had two of her friends ( Charlotte and Jaden over for dinner)
she has not seen them since Ryan was admitted for transplant, so we thought this would be fun for her.) Ally spent some time with her Daddy and then put herself to sleep. (this is a new thing)
Her new word is (ouch, ouch and she says it for anything , we think it is funny. Once she was in bed, and Kayla's friend went home, Dave spent so time with KK before bed.

Ryan had a good night until about 3 am, then his throat, tummy and bum were hurting..This is Mucositis.. Michelle was his nurse again last night, she is great...She gave him Morphine at about 5:30 and again at 7:30 as the pain did not seem to subside..The Dr. will decide today if he should be put on a running drip of not.

Ryan's hair is starting to flake off onto his pillow now, he is none the wiser yet. He seems comfortable now. Not eating or drinking, that is expected.

We talked to his new fellow ( we call her Dr. Mira), which is one step above a resident and one below the staff Dr...(the staff Dr. over sees the entire unit.)
Mira told us yesterday that this is her first JMML patient. We asked alot of questions with regards to how Ryan is doing. She told us that it is good that he came in with no blasts, however even with no blasts, there usually is a few cells hiding somewhere in the blood, so that is why they blast Ryan's marrow with high levels of chemo, hoping to get those last cells and block his bone marrow before transplant and then infuse Ally's. This makes sense.. She said that usually with a sibling doner we see the engraftment at about two weeks, sometimes 3..
We also learnt that it is not just Ryan that has a 50 % chance of relapse, we thought that was the relapse rate of his disease..it seems that transplant either works or it dosn't (for all the children up here) which also makes sense when you think about it.
So now we wait for some sign of (graft vs host) and (graft vs Luekemia).

Ryans counts today:

WBC- less than 0.1
RBC - 94 after transfusion yesterday
PLT-34 after transfusion yesterday.

From our window we can see that it look dull over Toronto today. Not sure how cold it is, have not been outside since Sunday.
Providing Ryan is ok , I will be leaving tomorrow night to see my best friend Tina as it is her birthday, and then to see Ally. Then back to SKH for friday and home for the weekend to see Ally.

Hope everyone is having a nice week!

Tuesday, February 10, 2009

February 10th- Day +4

Ryan had a bad evening last night. The mucocitis has set in. His thoat is very sore and his lips are swollen a little. He was given some morphine for pain at 7pm last night. I thought it would put him to sleep, but it did the complete opposite..he was wired for about 2 hours.

He was talking in circles, and then he hold me he will never leave me. I said you promise, he said yes, but continued to tell me "but mommy I can leave you when I get married to a nice girl, right mommy" I tried not to cry, and told him yes.

I got an email from a friend of a friend in Milton who's little girl (Savannah) asked for donations for Ryan in lieu of gifts for her birthday. How amazing, a little girl who gave up her birthday gifts to give to an illness that has touched someone in her community...Savannah you are truely amazing. All being well ,I will see her on the weekend to thank her personally.

We also received a beautiful gift that was dropped off to the hospital last night, unfortunatley we did not get to meet the families, but thank them so very much for there kindness and generosity.
Two beautiful blankets with Ryan and Ally names on them and a lunch bag with Kayla's name on it... all in a beautful pillowcase with the the Hyland family embroidered on it, absolutely beautiful.

I spoke with my sister last night and Ally continues to do great, no isses with her lower back and seems to be healing nicely. I got to hear her voice on the phone last night, she is trying so hard to talk. I am so lucky to have such a great sister and brother in law who is keeping me posted on everything I am missing with Ally and taking such great care of her,while I am at the hospital during the week. I look forward to my weekends with her, to see her beautiful smile and to get lots of hugs. It gets me through to the next weekend. Ally I miss you so much, and know that you are to young to really get it, but know when you are told this story in years to come you would not have it any other way.

Today, Ryan woke up screaming in pain, both in his thoat and tummy. Another dose of morphine to ease his pain.He then realized a picutre that Michelle our nurse from last night made for him...Dinosaurs, lots of dinosaurs, he loved it.
Our nurse today, Gina has been in to inform me that Ryan will be in need of a blood and platlet transfusion today. So we start with Benadryl as Ryan reacts to platlets, then the bag goes up and then we will move on to the blood. Should be a busy day.

Counts this morning:

WBC - 0.1
RBC - 74
PLT - 20

Dave said to me on Saturday that it would be a very long week as he thought this would all set in. I was not so sure..I guess hoping he would not be in this much pain and the side effects would not be so servre.Dave you were right, it is only Tuesday and it feels like I have been here for a week.

Hopefully tomorrow will be a better day for Ryan.

Suzie

Monday, February 9, 2009

February 9th- Day + 3

We made it through the first weekend after transplant..a few small issues but nothing that is out of the ordinary.
For anyone who is reading this blog and is located in the montreal area, there is a blood drive being held in Ryan honor (in Beaconsfield, detail on ryansroar.ca) on February 11th, that was put together by good friends Trish, Maggie and there mom Shirly...we would love to see anyone there to donate..remember one pint of blood can save 3 peoples live...that is amazing...something I was unaware of until Ryan became sick...it just opens our eyes to the little things that we can do to help another person in need..I donated my first time in honor of Ryan in Milton at the blood drive my sister organized on Jan 15th and I am set to do it again in March...What a great feeling to know you have help someone in the world. Thanks Trish, Maggie and Shirly to all there efforts in putting this drive together.

We dont really read into the things are children say or do, but now I wonder about everything that Ryan says, probably my own mind, as he is still the same boy doing the same things he did before he was diagnosed.

Ryan said to me last night, mommy I love you, I told him I love you to Ryan and he said but dont forget it mommy...he said this morning, mommy I am thinking of Ally..

On a lighter note, he has a higher pitched voice, Dave told me this over the phone on the weekend and I said sure Dave...now I her and yes it is higher pitched...they say this is a side effect from the Chemo.

He has had some pain this morning in tummy and has been to the toilet 5 times already....I wish I could do more to make him feel better...

No signs of an mucositis yet...so no need for morphine yet.
Ryan has 2 doses of a medication to reduce the severity of graft vs host. that was administered on day +1, today and will be administered again on Day +6.

We had a nurse just before transplant name Julie and she and Ryan were talking and she was asking him about his pokemon's and he asked her for some pokemom stickers. She said she would try to find some, Ryan turned around and said "do you promise" because my grandad said when you make a promise you never break it..
Julie said I promise I will try Ryan....

So today , Susan our nurse came in and told him she had a surprise from Julie, when Ryan opened it up, he was so excited it was a pokemon figurine....even better than stickers...THANKS JULIE...he loves it...

Ryan counts are :

WBC- 0.1 - dropped and are in the toliet so I call it. they will now have to come up once he en grafts

RBC - 79 - big drop from yesterday, will probably need a blood transfusion in the next day or so

PLT- 31 not a big increase, will most likely need another transfusion for this aswell soon
Platlets do not hold a long life span even in healthy children or adults but our body
regenerates ours automatically where as Ryan's are comprimised.

Again, thank you to everyone for there prayers for our brave little boy. If you could all say a little prayer for one of Ryan's friend (Trevor) who is fighting a different form of Luekemia. there are so many little ones and older ones up here fighting this disease and these boy and girls are so very brave and special.
TREVOR, ryan misses you and asks about you often. I saw your mom this morning as you were here for a visit and a finger poke and she told me that we will look back on all of this when you and Ryan are off to university. I believe in my heart we will see this day for both of you...

Suzie
XXXXX

Sunday, February 8, 2009

February 8th - Day +2

Good Morning,

Ally continues to do well, bandages are now off...she has 2 little holes in either side of her lower back..But all looks well.

I went out last night with my neighbour for a well needed drink (pitcher of sangria). I had a great time something I think I have needed but did not want to take as Ryan and Ally so needed me..

I got a text from Dave last night at 10 pm that stated Ryan was in great form. I was thrilled.
I then received another text at 12:00 am stating he had his first fever....that was a concern. Dave said that the nurses said they had been expecting a fever it was just a matter of time.
He has now been put on 2 forms of antibiotics and will remain on them until his body has excepted Ally marrow.

He has woken up this morning and had his sponge bath and bed sheets have been changed. That is a daily routine that can not be skipped.

His fever has since disappeared, but now his platlets have dropped below the amount that they allow....20.....Ryans are sitting at 17......so he will be transfused to ensure he does not bleed.
This is also excepted as in previous blogs I have said they will go up and down throught the process...Platlets have always been Ryan main issue...as he has already had ab out 18 transfusion since November 15th, 2008.

So we wait and continue to monitor him every 4 hours...

Counts:

WBC - 0.6
RBC - 91
PLT - 17

Ryan is watching TV and does not seem to be bothered....so that is a positive...as they say he will likely be put on morphine once the mucositis sets in ....not sure when that will be, this depends on each individual patient...

I will be heading back down to the hospital at 3:30 this afternoon, Ally will be dropped to Nicole and Kayla is with her grandad at the theatre watching the Sounds of Music, something I am sure she will enjoy....

Will post again tomorrow...Hope everyone had a nice weekend.

Saturday, February 7, 2009

February 7th, Day +1

Yesterday was hard for us all, but we are past that now, we now look forward to Ryan getting better..

I forgot to mention in yesterday blog that Dave had sent a beautiful email to CFRB (radio station) here in Toronto ( what a beautiful email it was) in short it basicly said that Bill Carroll the host of the show always opens up his family to us the public and his experiences. Dave wrote to thank him for that as he also has a child that visits sicks kids and it is easier for us as parents to come here knowing that other people think highly of SKH....it mentioned how they have somethings in possible and Dave was hoping that we never had SKH in common but now we do.
Then he went on to tell Ryan's story and Ally being a match... so they went on the air yesterday morning with the story and then Dave was interviewed for a few minutes....

All of this really makes us all realize what is truly important to us...Family, friends, health and happiness and love..not the cars, the big houses, money, trips...they are nice, but not important in the grand scheme of things... I would rather live knowing I have my kids, our family and friends and health than any amout of money in the world. ( it really does put it into perspective)

So I went home last night for the weekend to give TLC to Ally, but I find myself back at the hospital with Ryan as Dave had to run an important errand. So to date....Ally is doing great...she slept until 7:30 am and does not seem to be in any pain today....she has had a great breakfast and her bottle and my parents are watching her until I get back when I will bath her and take off her bandages...She has not needed any pain medication....

Ryan is also good, he ate 3/4 of a pancake this morning, 1/2 a bowl of cheerios and a chocolate...not bad for a little guy in his condition...

He looks extremely tired and will not eat his lunch....vitals are stable.....

His counts today are

WBC - 1.0 no change but it is expected to change soon.
RBC - 89 so up a bit
PLT - 31 so also up a bit...

I have talked to the nurse today and she tell me the Red and Platlets will fluctuate...
The whites will depleat to nothing very soon. Fever will set in and we wait for some sign of graft vs host (Ryan's body fighting Ally's marrow)...we want to see a small amount of this, not to much..sounds a bit strange as we want him to except it...what we want to see is graft vs Luekemia (Ally's marrow fighting the Luekemia)

I hope everyone is enjoying there weekend, will post again tomorrow or Monday.

Transplant Day - February 6th- Day 0

The day we have been waiting for!
The First day of our new life. A day where we have been given a chance that Ryan can beat this, now it is up to Ryan body to do what it needs to do. And we will fight beside him all the way..

Ally arrived at 7 am and was pre - admitted and put in to the cutiest white hospital gowns...(pants, shirt and booties). She would not go to anyone else but her mommy....I guess that is what happens when you have not seen one of your children for 5 days....it breaks my heart....
So off went to the waiting room when they call you for surgery....I was worried that she would not go with the nurse in to the OR...they asked me if I was ok with her crying if she did...what could I say....so I said I guess so, this has to be done....so off she went and to my surprise she went quietly...(looking a bit scared but she did not cry) unless that happened once she was in the OR...we waited for what seemed like hours but was about an hour and a half and the DR. came out to tell me she was breathing on her own and all was good....They took 250 cc of her bone marrow to give to Ryan. The reason that amout is because Ally is so small, they could not take any more with out putting her at risk..She then went to recovery where she was out of sorts to say the least...she was very upset and in alot of pain ( Morphine was given x2 as her heart rate was up from the pain...) once she was calm I left her with Dave and went to clean Ryan old room to get all his things ready for the new isolation room. I also wanted to check in on Ryan to make sure he was doing ok...So needless to say this was a day of running from floor to floor..
With the help of Tanya and my parents we were able to go from Ryan to Ally with out worring about leaving them alone...I spent the afternoon upstair with Ryan wipping down his toys to bring into his new room and watching Ally bone marrow fuse into Ryan...He took the transplant great....no pre meds as Ally was such a good match and same blood time...so no real risk of any reaction....it toook 4 hours to run her bone marrow into Ryan but it was fine..ALL WENT WELL.
At about 6 pm I packed my stuff and said by to Dave and Ryan and went to see Ally just ot find out she could not leave as she had not peed all day, another concern.....
So we have to wait....she was in so much pain 9just crying and trying to get confortable.( oh how I wish I could have made it better) I held her and held her and finally she peed at about 7:15 so we were given the ok to leave....they administered so codine for the pain.

Ryan had his first bout of vomitting the night before...It was out of the blue, no warning..
It lasted about a minute and he said I feel better now...they say this can happen, they just feel sick and then they feel better... Ryan said mommy do you like the smell of my vomitt...I said now way, and then I asked him the same thing...he looked at me and said "NO"!!!!!!
I told him he was such a brave boy and his response to me was "yes I am" and off he went to sleep...the rest of the night was great.

Counts today :

WBC 1.0
RBC 84
PLT - 24

So dropping steadly we should see no whites tomorrow or about .1 or .2.....

To my sweet Alexandria,
You do no understand what you have given to your brother, but you have him the chance of life...As you get older we will explain this to you so you understand what a wonderful thing you have done. Without you " a perfect match and same blood type, ryan would not have the same chance to fight this disease.
You are truly Mommy and Daddy's angel, and I thank you so very much for being able to give him this hope. Hope for a life where he can do and be whatever he wants to be.
I have told your brother that you have given him your blood and he understands that your blood is in side of him and he said Mommy I love Ally and I am getting her good blood so I can get better and we can go home...

Sorry everyone for not posting this yesterday , I am sure you were all wondering.but by the time I got home I had no energy to do anything...

Thanks for all the prayers and please keep praying as this is the first step to a long road ahead. We now need Ryan body to except Ally's bone marrow and en graft...that ususally take about 2-3 weeks... and the we need him to stay in remission forever.........Ryan this is my hope and prayer for you, my sweet little boy....

XXXXXXX

Thursday, February 5, 2009

February 5th Day -1

Ryan has yet another good day! It boggles my mind that he has not had one episode of vommiting. (knock on wood) He is however showing signs of fatigue.. sleeping a bit more.
Eating again, probably because they stopped his food suppliment for 24 hours to give him is last dose of Chemo last night..

He woke up grumpy, who could blame him ( I dont want to be here, so I can only imagine what he thinks)

He asked for toast this morning so toast is what he got, then another piece and another and another...yes 4 pieces of toast...good for him .....nothing since but we are ok with that....

He played with his best buddy Mary Sunshine again today and she brought him some special coloring pages. (Pokemon).

Gramma and Grandad came for a visit but only got about 10 minutes in before he crashed out on the couch in the parents longue...

Counts today are :

WBC -1.7
RBC - 84
PLT - 31

I think they will be doing a blood test tonight to ensure they keep him above 20.....

Again addicited to the smurfs....Dave came down with figurines that he picked up at Square One and so nerds...that is what Ryan asked for...( who would have thought he would want NERD, lol)

We are thinking of our friend Trevor who just got admitted back into hospital with a fever...
Trevor we love you and are thinking of you and hope you get to go home soon.
For those of you who are not familar with Trevor, he is Ryan's friend they meet here at SKH in November when they were both diagnosed.

So we are ready for tomorrow, Dave is home with Ally getting her ready with my sister and parents. They have to be here for 7 am and her procedure is at 9 am ....she will be very cranky as she can not have her bottle in the morning..

This is it......HOPE, FAITH AND PRAYERS, there is something to be said about it all.
Once my monkey falls asleep I will head down to the chapel here to say a prayer for both of them.

Sleep well , will update you all tomorrow.

Hugs and kisses to you all,

XOXOXOXOXO

Febraury 5th - Day -1 Poem from a friend.

I received this poem from a special lady who I think is amazing, brave and strong and inspires me to be the same....Thanks Michele. I know Jean Pierre is watching over Ryan.

YOUR SPECIAL ANGELI’m your special angel,On orders from above.To see that as a child of GodYou receive some special love.God sent me down to find you,I knew exactly where to look.For your name is written down,In God’s big address book.He said I’d recognize you,From you little turned-up nose.You’d also have two shell-like ears,Complete by two ear lobes.He gave me then a choice,Of you left ear or your right.Said I could stay on either one,So I’d be with you day and night.So, if you ear begin to tickle,From the flutter of my wings.Remember I’m an angel, And angels do those things.Now if you get to feeling sad,Or maybe kind of scared.Just tug upon your earlobe,I promise to be there.I’ll come straight to your rescue,Because that’s my job to do.God thinks you’re very special,That’s why he sent me down to you.

February 5 Day 1

You will most likely see two entries today.
Ryan this entry is for you. Mommy has decided that once we are done with transplant, this blog will be printed off and binded for you so that when you are older you can she what a brave boy you really are.
It is 4 am and I am awake because once again your feet are itchy, I now ask myself if they are really itchy or if you are like me and just like them tickled...as you keep telling me to tickle not scratch ( and when I stop for a minute you don't seem to complain that they are itchy.)
For some reason I am now wide awake and am watching you sleep peacefully and can not help but cry, we are 1 day away from your transplant. I guess it is hitting me that this it, we need this to work, we need your body to except Ally's bone marrow and for your body to get rid of any reminance of your cells. Ryan you can do this, I know you can.
Ryan you are amazing, brave and have not complained once through this entire journey, a journey that you will probably not remember but one Daddy and I will never forget. The day we found out you had Luekemia was the worst day in our lives, a day that changed our lives forever. (2 days before we actually knew, we took you to the Dr as you had a bruise and purple dots all over you arm, once I got you to Dr. Walk he said you looked very pale and that your liver and spleen were enlarged. I knew in my heart something was terribly wrong, so I went home and researched and found luekemia. I called you daddy and told him my thoughts. Your daddy said to me, "I do not have a good feeling about this, Suzie". Dr. Walk had asked us to come back the next day to do some blood tests, I told him I wanted the results before Monday and he said he would call on Saturday...I put my faith in the system and waited. He called as promised at 2:15 pm just after I had put you down for a nap and told me I would not be wrong to take you to the hospital so off we went...that night it was confirmed, we just had to wait to find out what form of Luekemia you had. We went from praying that is was not Luekemia to hoping for the best form of Luekemia, 8 days later we found out that you have the rarest form of Luekemia (unfortunatley one whose only cure is a complete bone marrow transplant) and a 3o% chance of a family match.
So Daddy , Mommy and Alexandria had our blood tested to see if any of us match you in order to donate our bone marrow. Finally on December 19th, 2008 we were given our christmas miracle your baby sister a complete 6/6 HLA match, you could not ask for better. Ally is your little ANGEL, a gift from god that is going to save you. Daddy and I have HOPE and continue to believe that you are going to do great things in life and you are going bounce back from this bump in the road and continue on to do wonderful things. (you have to, there is no other choice)

Ryan the day you were born is a day I will never forget, the day after mother's day (May 10th, 2005. I had been in labour for 16 hours and you fought to stay in my tummy. They decided a c-section was best to bring you into the world. I had waited for this day for my entire life, but when they put you into my arms, I was so scared,( I had waited for you for so long and then I did not want to hold you) at that point in my life I realized I was not just responsible for me but for a new baby boy that needed me so very much to nuture him and take care of him and to give him a chance to grow into a stong little boy and eventually a man. Ryan love is not something that is automatic, it is something that grows with time, you and I had to get to know each other and learn each others ways, we had a hard time for eight weeks, we both cried all the time.
But I can tell you this my sweet little boy that over the last 3 1/2 years I have fallen in love with you a little bit more every day, your smile, your laugh, your voice, the funny way you grab my face to kiss me, and hug me every day and tell me you love me. We are now closer than I ever thought we could be. It is true what they say, boys are mommy boys...that you will always be.

Ryan, you being sick has truley made me realize the important things in life, love, happiness, you, your daddy, your sisters, ( Kayla and Ally) and the rest of our family. With out that nothing else matter.
I promise you that we will not give up HOPE and that mommy, daddy, Kayla, Ally,and everyone else that loves you, will fight with you every step of the way.
Ryan you have so many people praying for you all over the world, family, friends , and some people who dont know us, but have heard your story.

Get well sweetheart.

Love Mommy,














Love Mommy,
XOXOXOXOX

Wednesday, February 4, 2009

February 4th - Day -2

Almot there, 2 days to go until Ryan receives his transplant...and is on a road to recovery.

Yesterday was long he did not sleep at all, trying to entertain a 3 year old for over 12 hours is hard to do, especially when in closed corners...
Luckily for us they had the clowns here yesterday so Ryan got to see Mary Sunshine, and then they have Bingo at 1 pm....The put it on the television and televise it from the Bear room on the 4th floor every 2 weeks...So yesterday the Bingo theme was "FIRE" they had the firefighters her to do the game and we watched from our TV, if the kids in the room win they go down to get there prize....so we played 2 games and Ryan won the second one, so off we went....When he got there he was given a fire fighter hat and of course Ryan road in on Fred his IV pole and they said they would love a ride like that ...So he had his few minutes of fame on the TV yesterday..

We took some walks went down stairs , he now has to wear a mask to leave the unit....counts are low...

He starts his last dose of Chemo in about 1 hour and it runs for about 1/2 an hour through his IV, I think this one is the strongest dose he will have...they told me to expect vomitting and nausea...so we will see...so far he has been able to hold his own.

He is hooked on cheese ( at least it is something) sips of water and apple juice....
We are taking a daily bath and washing the dinos and now the pokemon..

I found a few DVD of the smurfs he was hesitant at first and now is addicited to them, we are on DVD # 4....( bring back those child hood memories)

His night was good fell asleep at 9pm and I went to bed at 11, IV did not go off that much and from 2-7 I slept solid...yeah......

He has woken up and will not really open his mouth, few words and looks ill.....eyes are very dark and he is telling us he has a head ache...very common with all the chemo....he also say his feet have a head ache...

He is calling for me now so we are off until tomorrow...

Counts are:

WBC - 1.8
RBC 83 (reason he is so tired)
PLT 34

White blood counts fight infection, so Ryan is almost depleted.
Red blood count is enery and oxygen in his blood so the lower they are the more tired he will become
Platelets are what clots your blood so the lower they are the more risk of bleeding.

Hugs to all,

Ryan, Dave and Suzie

Tuesday, February 3, 2009

February 3rd day -3

We are back,
Bit of a long night last night, Ryan feel asleep at 6:50 because he had no nap.
He was then awake at 10 pm just as I was going to get into bed. So we were up until he again fell asleep, once I acomplished that Dave called at 12 am to talk....then there are the IV pumps that beep all night and you need to push a button to call the nurse (so up I get about another 8 times ) Ryan was up at 4 am to play, (thinking no way) so back to sleep he went and then got up at 9:50 am. WHAT A NIGHT.

It is snowing here in TO this morning and we are lying in bed watching finding nemo....
Mary Sunshine is here and doing magic tricks with Ryan (he loves it)

He complained late in the day yesterday that his tummy was hurting and he has to throw up, and then looked at me and said but I am not going to, because I don't want to...(mind over matter) good for him.

He spent the day in his dino hat scaring the whole 8th floor. Ward A, B, C, D....everyone thought is was so cute....Cameo please thank your mom and let her know he loves the hat...

Counts are steadly dropping:

WBC - 3.0
RBC - 93
PLT - 39
His Poly are 2.08 so he will soon become neutrepenic and will not be able to fight a bacterial infection...

So as the whites keep falling the poly's will fall as well.

Everytime I look at him, all I want to do is cry, as I can not imagine my life with out him.I can only HOPE and pray everyday that he is strong enough to fight this disease. So far he is doing great as per the Dr's. Dave and I try to stay strong everyday, some days harder than others...He is a fighter so I will hold onto that.

Dave and I thank everyone for there messages, well wishes, phone calls, deliveries of food, everyone who reads the blog, messages on facebook.

Ryan is so lucky to have so many people routing for him.

Monday, February 2, 2009

February 2nd Day -4

Reporting from room 69 on 8B is Ryan Hyland, he wishes to tell everyone he is brave and fighting his blood...(his words)

So round one of the new chemo is done and he has been given the steriod, so I am awaiting to see if he turns into a Jeckel and hyde personality..
Dave was down for lunch and Ryan has eaten froot loops and milk, spagetti noodles 3 mouth fulls with some chips and a minigo. He has had 3 looly pops and some apple juice. Oh yeah and a haagen dazs vanilla ice cream ( not bad for a little guys that is on suppliments for not eating)

He has played with Kim the volunteer this morning, so I ran down to get a bagel and tea from Tim's

Counts today are:

WBC - 4.3
RBC - 96
PLT- 43

Dr's do there rounds every day but on Monday's there are about 16 of them outside your door and 1-3 come in. When they got to us this morning Dr. Tal said everything is going to plan with Ryan so no need to do anything and she asked me if I had question and they were gone...so I guess that was good news.

Julie is our nurse today and she was also our nurse yesterday and she is amazing, sat with Dave and explained lots yesterday to him and also Nicole and Shayne.

Ryan is still in great form, busy, wants to do lots. Effects should hit in the next day or two...it seems like we are expecting reaction to things and they dont come ...good thing as I have been told by the nurse....we are on track ...
Ally is in good form heading in to Friday, so they have given me a list of things to do with her on Thursday night to prep her for Friday.

I think I will go home on Thursday to get her ready and then stay here on Saturday with Ryan .
She is doing such a great thing and I think I need to give her some TLC....and as long as Ryan is stable Dave can cope and call me if anything changes..

So that is the news for today from 8B- BMT unit at SCH in Toronto.
Signing off

February 1st - day -5

I just want to thank Erin and Alex for coming to visit Ryan yesterday, as well as Nicole, Shayne , Ethan and Aidan, it really occupied alot of his time. Erin he had a bath last night with his Dino's.

Dave had updated me through the weekend that Ryan had stopped eating and they were considering putting him on a suppliment...

When Kayla and I got here last night, he was so happy to see us, so we hung out in the hall for a while and Ryan and Kayla played for a bit. Kayla gave him her sweater and he had it around his shoulders. Kayla he misses you so much, he watched you and Daddy leave from the window and saw that you took the stairs and daddy took the elevator and he said Kayla daddy won, the elevator was faster...I laguhed..He also said I don't want Kayla to go mommy....

He ate a few pieces of spagetti noodles for me last night and sipped on some milk....at this point whatever he asks for he gets (nurses said that will stop on Friday) strick diet....low bacteria....

He takes his medicine - Septra to prevent chest infections / and Dilantin to prevent seizures by him self...we play a bit of a game.I leave the room and he has to have it gone by the time I get back....so I walk outside and watch him and then I come back and he is so proud of himself...

His is addicted to his Nintendo DS ( Super Mario), he concentrates so much and get frustrated when he loses a man

So we are done with the 16 doses of Busulfan and the dilantin will stop later tomorrow.

We start the second form of Chemo tomorrow (stronger than the first) it is called Cyclophosphamide (this will be given on Monday and Tuesday) it will be given by IV and run over an hour....Side effect usually will start with in a day or two.

They will also give a drug to prevent his bladder from bleeding as this medicine can attach to the wall of the bladder and sometime they see some bleeding...(they said it usually happens in the older kids, as they tend to hold there pee, where as the youngers ones cant hold so hopefully this does not happen to Ryan

Counts today are :

WBC - 5.4
RBC - 96
PLT - 40 and holding

We saw some broken blood vessles under his eyes and one on his leg so we informed the nurse and they ran an CBC just to ensure the platelets were still holding (test was done at 8:45pm)
results:

WBC- 4.8
RBC - 96
PLT - 43 (so still holding) do not have to worry during the night....yeah

Will post again tomorrow.