Tuesday, March 31, 2009

March 31st Day + 52

Ryan,

Mommy has had a rough week. Since last wednesday I have had tears, and been very sad.
Just when I think we are getting back on track, Wednesday is here again. So I go from being upset about new we have received to what will be next.

Mommy went to the Dr. for herself this week to make sure that I can take care of you.
I have not been sleeping well, all I do is toss and turn and worry about you.
Dr. Walk has given me a mild sleeping pill and told me that if I can get a good night sleep, maybe the days will be a little bit more manageable. So I will try this route.

You got to meet Karen, Jeff, Ben and Natty this weekend. We had a brunch on Sunday and it was great.

Friday and Saturday you we not really yourself, but by Sunday you were eating well and drinking more and I saw alot more activity from you.

Mommy was telling her friend Heather (Kathryn's mom ) about what our news was at the hospital last week, and she offered some help. Heather said she could contact a Dr. she is in touch for Kathryn and see if there was any studies or other treatments for JMML outside of Canada. Ryan, within a day we had an email from a German Dr. who would be interested in hearing your story and giving us there opinion.

Mommy and Daddy have so many questions and Gramma and Grandad are coming down this week to the hospital to be a third set of ears to hear what Dr. Gassass says.

I am not convinced, that we are on track here. I am not convinced that we can not do another transplant to get your remainning cells out. All I keep hearing is a year...Why a year? Does it have something to do with Ally adn her age? I wish I knew.
Yet most studies and information on your disease show better results on a second transplant!

We have made a list of questions and hope to get the answers tomorrow.
I will also be sending my email to the Dr's in the United States and Germany with your case history for a second opinion. Ryan, we have to do this as we are your voice, we need to know that we are doing everything possible to get you better. It is not that we do not have faith in the Dr.s here( that is not it at all ) but there maybe someone else out there that can sheed a different perpective on your case, know a little more or can offer some other advise. I do beleive that there is no harm in this.

Ryan, I am not sure what tomorrow holds, but whatever it does, know that we are there fighting with you every step of the way. We will figure this out.

I can not wait until it is a bit warmer so you can play outside a little longer. We take short walks to the park, but you are to cold, so we don't stay long.

You are so excited that your Grandad and Gramma are coming to visit today. All you keep asking is can I go fishing with Grandad...Soon honey soon.

Ryan, Mommy has to apologize to everyone who has been reading the blog for the lack of updates this week.
I will post again tomorrow as to the news we hear at Sick Kids.

Wednesday, March 25, 2009

March 25th - Day + 47

Ryan,

We did not have such a great day at Sick Kids today. Another day where the news was not what we wanted to hear. So we pray and hope some more.

Dr Gassass said that your white count is up from 6.1 to 11.1 since last week. The normal range is between 5.0 - 12.0. He also indicated that your monocytes are 1.59 (elevated) normal range for this is less than 0.57. The monocytes are also a marker for JMML. I think this means the higher they go the bigger chance the JMML will re-occur. Dr.Gassass thinks that you might have a bit of GVHD ( graft vs host disease) so hopefully that will work in our favour next week when we get the results of the fish test. ( your cells vs Ally's cell) we want them to be higher in Ally's favour than last weeks results. Should this fail and we see more of your cells, than they will probably do the DLI and give Ally and injection to increase her white cells and then harvest them and give them to you in doses. If they were to give it all to you at once, Ally's whites would attack you and cause more problems.
I asked if we could do another transplant and was told things happen in steps and that if you get to a year post transplant it could be an option.
If the DLI does not work than we are out of options Dr. Gassass said.
He told us not to loose hope. He is not convinced that the JMML is back at this point and that we have to try to remain positive.

Daddy and mommy are not sure what to do. We have so many feeling running though us right now. We love you so much and the thought of you not being here is unimaginable to us.
I cried all the way home from the hospital. I cried so much I gave myself a headache.
The thoughts that went in and out of my head all the way home was enough to drive anyone crazy. I am surprised that I am not already there.

The first thing you said to me when we left the hospital was "mommy, can you take me to see everything I have never seen before." So I asksed you what that was and you did not have an answer. Do you know something we don't? I have asked myself this question time and time again. I have not really come up with an answer, I think I still am just reading into what you say.

Ryan, I will pray every night that we get better news next week.
We still have not got our second and third piece of good news.

Our first was that Ally was a match after a trying month and a half from the date of your diagnosis. And all good things happen in three's.

So I will hang on to this and hope for the best my sweet boy.

I love you the whole world and back again, and when you are able to read you will say "hey mom that is what we say everynight before bed.

Mommy

Tuesday, March 24, 2009

March 23rd Day + 46

Ryan,

Here is another Poem that was written for you by you friend Kai in England's mom.

Ryan is a dinosaur….
He just as strong, that’s for sure
When he plays you should hear him roar
His feet go thudding on the floor.
On Monday he’s a big T-rex
See how those muscles flex!
On Tuesday he’s a Brontosaurus
He’s hungry, he shouts “I want More-us!”
On Wednesday he’s a Triceratops
He’s big and loud and never stops
On Thursday he’s a Diplodocus
He’s magic too, Hocus-pocus!
On Friday he’s a Pterodactylus
He’s got wings, he makes no fuss
Come the weekend he’s an Iguanadon
His 5 metres tall and just as long
His energy goes on and on….
Ryan is a dinosaur
When you hear thunder, it’s Ryan’s roar
His footprints will stay forevermore
Ryan you’re big and brave, and that’s for sure!!
Get better soon big boy
xxx

March 23rd Day + 46

Ryan,

Trevor's mom cindy just sent mommy a poem that she knew that I would relate to, so I thought I would share.

He's My Son-By Mark Schultz

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs your help
I've done all that I can do myself
His mother is tiredI'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill up her eyes
Can you hear me?
Am I getting through onight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See he's not just anyone
He's my son
Sometimes late at night
I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I beLiving without him here
He's so tired and he's scared
Let him know that You're there
Can you hear me?
Can you see him?
Please don't leave him
He's my son

March 26th- Day +46

Ryan,

Your spirits are still good. Yesterday and today have not been good days in the sense of eating and drinking. Ryan it is so important that you eat to sustain your weight and drink to keep from getting dehydrated. I place a call in to Kim at the hospital as your stools have increased, so I am worried that you will not keep your weight up and that you will end up dehydrated.

Yesterday you received a bear named Cromwell from Olivia and Merideth in Montreal.
A note came with it that said he need a place to live and a good friend and that you would be perfect. How they new he liked to do all the things you like do is amazing.
He like to go to the park, watch Diego and wonder pets, he even like Tim Horton's Tim bits.
When I read the note to you, you said mommy that is everything I like. You hugged him and took him to bed last night. When daddy came in to tuck you in at late last night, you woke up and asked daddy, where is Cromwell. Daddy tucked him back in beside you.

Ryan, Village Hair Studio has asked mommy if they can do a cut-a-thon on April 5th in your honor with all proceeds raised to go to Sick Kids. Mommy is truly amazed at how you have touched so many people. Mommy and Ally will be going to support this cause as Sick Kids, or as you would call it The Sick Kids hotel has been so good to us. Ryan there are so many children at Sick kids fighting just like you and who need help and even other's who just has visits every once in a while.
We all need this hospital. It is truly an amazing place, should anyone every have to visit.

You are sleeping now after a very long morning. I think you are started to get cabin fever and it is to cold to go outside. You are so sensitive to the cold these days and I do not want you to get sick. A few more days honey and we will go outside.

I love you so much

Mommy

Monday, March 23, 2009

March 23rd Day + 45

Ryan,

You have a nice weekend. We did not do very much.
You spent alot of time with your Granadad. He brought you a fishing rod, so you can go fishing this summer. Something to look forward to.

Kayla was here for the weekend, and you all had a great time together.

The basement is getting there, it should not be much longer until you will have your own place to play.

You are taking you medicine like a trooper. I am so happy this is no longer the battle it once was.

Your bowl movements have increased since we have lowered the medication as per Dr. Gassass.
You also had a bit of a rash on the weekend. Mommy called the hospital and they said to keep everything status quo and call on Monday to talk to Kim and they will decide if we need to adjust the medicines again. We do not want you to have to many loose stools.

We went for a drive yesterday and you slept through the whole thing. We just wanted to get you out of the house for a little while. You went to the park and had a nice time on the swings. You love the red swing so much and never want to get off of it.

Pretty great weekend.

Love ya

Friday, March 20, 2009

March 20th -Day + 42

Ryan,

You had a great day yesterday. Your cousin Ethan came over at 10 am and stayed until 7:30 pm. You played so nicely together and it was wonderful to see you playing again and having fun.
Mommy hardly saw you. I missed it so much as we have spent the last 5 months together, but got great pleasure that you were having a nice time.

When Ethan left last night, you told me mommy he forgot the giraffe I gave him to remember me by. My heart sank. You will understand when you are older that people read into what other people say.
Something that mommy has to stop doing, as you are only three and just trying to find a way to communicate your thoughts to Daddy and I.

Daddy and I stayed up last night and asked oursleves when this journey would get better. We came up with it will never get better. November 15th was a day that changed our life forever, and now we look forward and see a life of uncertainty. If you get through this we will always wonder if your cancer will come back, and if you don't we will never get over it and we will never be the same people we once were.

I write my thoughts Ryan, so that when you are old enough to have this blog you will see what an amazing person you are. That you will understand how difficult this was for all of us and how you being sick has affected so many people. That this is just a bump in your path of life. That you are destined to do wonderful things. And that once you get through this you can look back on this and see what you have overcome. So you can see all the people that cheered you along the way and supported our family throught this difficult time.
This will make you stronger. This will make us stronger.

I also write this blog, because it is a way for mommy to cope and deal with all of this. To get my thoughts out and not to bottle them up. Mommy is so worried about you. I want you to be one of those miracle stories that we always hear about in the news. I am worried about your daddy and your sisters aswell. Ally is so young and will probably not remember alot of this. Kayla understands most of it and has her sad days, and I know that Daddy has his quiet moments away from us all. He is doing a great job of being so strong and holding it all together. But I know he is hurting just like the rest of us.

The basement is almost done. It was a work in progress and it was being done slow. Daddy and I with the advise of Grandad decided to move it along quicker, so you have a place to go as you are isolated for now. Hopefully it will be done in a few more weeks.

Ryan, I mentioned in a previous blog that I was not impressed with the cleaners that were in to reduce the amount of dust in the house. Gina called back today and they will be back next week to redo all the dusting in the house. Mommy was happy that they decided to do this. It only maked sense as it was not done properly.

You are asking for lunch now, so I will finish for today.

Love ya

Mommy

Wednesday, March 18, 2009

March 18th -Day + 40

Ryan,

So we are just getting home from the hospital. Your first visit post transplant.
You needed your lines accessed for them to do your routine blood work. You were happy to help. We sat with the Dr. and asked if the fish test ( your sisters cells vs your cells ) were in and we were told no.
Daddy asked if they could call for the results as we were told it would only take 4-5 days to get the answers. (Daddy was very anxious.) The Dr. said that she would call and see if they were in and just not put into the computer.
We waited about 40 mintues and we were told that your routine blood work looked off. Daddy, again asked if she had called for the fish test and she looked at us and said we will take about this later with Dr. Gassass. I am not sure if it was how she said it or the look on her face, but Daddy and I both new that it was not great news.
The re-did you routine blood work and we waited another 40 minutes.

Dr. Gassass then came in and said the first test this morning must have been a bad sample as your Red count was very low and did not make much sense.

your counts today were;

WBC- 6.1
RBC- 89
PLT - 164
Poly's - 2.89

Dr. Gassass said this is all good. He then went on to say that he need to let us know that the fish test came back as 197 cells as Ally's and 3 cells were Ryans.
When they do the test they take 200 cells and check to see what the ratio is.
This works out to 1.5% of the cell are your and 98.5% are All'y'.
Daddy and I were hoping that you had 10% Ally's cells, but this is not the case sweetheart. We know have a new bump in our road and your journey. We now have to decrease one medication (cyclosporine) to see if Ally's cells can destroy the remainder of your cells. The fact that you still have some of your own cells put you at greater risk of relapsing.
You will be monitored every week as usual and then we will do the fish test every second week to see what your cells are doing.
Should this not work ( decreasing the medicine) our next step will be to look at Ally again.
Dr. Gassass called it a DLI. DLI means that they would inject Ally with a drug and increase her white cells and then harvest them and infuse them into you. This would mean that Ally would have to be put under again and her hospital stay this time would be 3-4 days. Dr. Gassass has told us not to panic yet.

Mommy has had her tears today and is now thinking positive as that is the only thing I can do.
You are everything to us, and to know that the transplant was not 100% successful is hard to swallow. We wish this journey for you was over and you could get back to your normal life.
It seems as if this journey will be a little longer than we thought honey.
Ryan remember, things in life are not always easy, sometimes there are bumps in the road and then the good things come to those who wait.
Ryan, you just told me " Mommy don't worry I will be fine"
We love you so much

Mommy.

Monday, March 16, 2009

March 16 - Day + 38

Ryan,

What a busy day we have had. It is 8:20 pm and I am ready for bed. You are however wide awake on the couch and hooked up to you friend Fred. You just told me you like being hooked to him, I asked you why and you said " because I love him mommy".

You were up early (7:30) coughing and a runny nose. I was concerned and put a call into the hospital to our contact nurse Kim. Our home nurse checked you out and said that your chest was clear. That put my mind at ease a little.

You are taking your medicine with no problems now, so that is once less worry. We have got it from taking 1 hour to about 3 minutes. Go Daddy. All credit for this goes to Dave. He has the touch.

Kim called back at about 9 am and said that if all was clear fluid in your nose and what you were coughing up, that we should not get to worried. I told her about your legs and she said to watch it.
They see sore legs mostly amoungst the older kids and the parents call in upset as they think the cancer is back, as it is the first common sign of childhood luekemia. She told me to remember, Ryan has been bed ridden for 6 weeks and he is home and probably using the muscles more.
She said we will do blood work on Wednesday and see what his counts are.

The cleaners were here and unfortunatley they did not do the greatest job, I will be calling to complain about that in the morning. Daddy could not believe it when he got home.

Steve was here completing last minute things in the basement, and all I could hear over the vacuum was him calling my name. so I ran downstair and he looked at me and said I think I need to go to the hospital. he looked in shock and then said that he had a bleeder and sliced his finger. Ryan mommy is not just your nurse, but is becoming a nurse to all in need.
I ran and got some of you supplies and wrapped his finger and taped it to apply pressure to the wound. Wow, it was a good one Steve. By the time he left for the hospital, the blood was soaked through. I think Steve was more worried about me passing out than his hand.

Then the steam cleaners came and cleaned the couches, so we are up and running finally.

Kayla is coming over for St. Patty's day tomorrow night and we have to be at the hospital early on Wednesday for you first appointment post transplant.

Gramma and Grandad are coming on Wednesday and you have asked more than once for your grandad as you want him to take you fishing. I don't think that will happen this trip, but soon honey, when the weather is warmer.

Lots to look forward to this week.

Mommy

Sunday, March 15, 2009

March 15th- Day + 37

Hi Ryan,

You have had a nice weekend. You played out side yesterday with Daddy and Ally.
You also went with mommy to the O'leary house to drop off our change and a donation as they have a party each year in honor of Mrs. O'leary's father who passed away from Luekemia in January of 2008. There house was decorated in green for St. Patty's day and you acted very shy. Mr. O'leary gave you a hat and a St. Patty's day necklace and a balloon.

You have complained about your legs hurting at the end of the day. Daddy and Mommy of course worried as sore legs is one of the first signs of Juvenille Luekemia. You are also complaining that you are cold. So we have kept the windows closed and the heat on.

Mommy and Daddy are getting anxious for Wednesday, we think that might be the day we find out if the transplant indeed worked. We are crossing everything and praying that it did.

I got an email from your friend John Bishay's mom and she said that he has all of his sister's cells, so that is wonderful news and we wish them all the best in ther journey.

Today you went to the park with Daddy in the morning, while mommy went to do some errands.
I decided to repace all of our cleaning supplies with new once to ensure all dust is removed from our house. I called in the duct people to clean all our ducts today, so again you went to the park as I thought is was better you were out of the house in case any dust came up.

The cleaners are coming tomorrow to clean the house from top to bottom. We should be up and running soon.

You are sleeping pretty well and I think Daddy is feeling left out as I think I am in your bed more than my own.

We have not seem your cousins since we got home as we have been waiting for the all clear from your Auntie Nicole that the boys are completely over there colds.

We went for a small visit tonight and they also wore there masks so you would not think you were the only one. Ethan thought is was great. Aidan not so much.

We have done bath time and you are now hooked to Fred for the night. You also took both of your medicines like the tropper you are. This is getting better every day.

Mommy had a few tears tonight and you asked me why and I told you that is was because I was sad your legs hurt and you do not want to walk. you said mommy I will walk down the stairs if you stop crying. What a caring little boy you are. Always looking out for me.

I hope you sleep well tonight. Sweet Dreams!!!!

Mommy

Friday, March 13, 2009

March 13th- Day + 35

Ryan,

So far so good, you are doing great.

Mommy has been working hard to get our house in order for you.
I have called in professionals to clean all the air ducts to alliviate any dust, they will be here on Sunday. I have also called in the cleaners to do a one over on the house to get rid of all the dust that may be lying around. all I have left to do is find someone to steam clean the couch and chairs.

Kayla and Ally are coming home tonight to see you and you are so looking forward to it. Hopefully we will rent some movies and have a nice dinner together.

I went last night and gave blood, as so many people need it. You have opened my eyes to that.
Daddy wants to give, but can not as he was in Ireland at a time that the blood was tainted.

Auntie Nicole and Uncle Shayne also went. This is something we will do every two months, in order to give back.

After giving blood I went to see Sherry, Steve and Stevie and Aunt Tina met me there for tea and I brought home a beautiful red bike that was donated to the charity event for our family.
You were amazed by it. You have been riding it around the house all day.

Mommy read a story in the Milton paper about a family who has a party every year, in honor of a man that passed away from Luekemia and they serve drinks and food and all they ask is that their friends and family bring there loose change. I have put a call in to see if the family can give me a call, so you and your sisters can donate some of your piggy bank money. Everything raised goes to sick kids. Ryan sick kids has taken such great care of you and given you, with the help of Ally a fighting chance. I know you don't understand this now, but Daddy and I will explain it as you get older.

We are still having problems with your medications. You really don't like them, but are managing with great difficulty to get them down.
I have become quite the nurse Ryan, I can not only clean you central lines, but I can also hook you up to your overnight hydration. you would have guessed it could be so easy. I love it.
Maybe I should become a nurse.????????

We went out today in the car for a drive, we stopped at your aunts house because you wanted to drop off chips to your friends. You are not allowed to go in at this time, but can be on the street with your mask, so your friends came out to say hello to you. You had a nice time, it was only about 10 minutes but you enjoyed it alot.

We read 5 stories today and then you took a nap. You were so tired.
You woke up with pains in your tummy , so I will keep an eye on how frequent they are.
Ryan, you need to drink more, you are finding it very hard to do, but we will continue to work on this.

Stay strong my little man, you are doing great.

Love ya

Wednesday, March 11, 2009

March 11- Day + 33 First Day Home

Ryan,

We drove home yesterday from the hospital and it was amazing; you were looking everywhere and making comments on everything you saw. From the taxi cabs to the dinos in the park. I thought, sure Ryan, there are no dinos in the park and guess what I was wrong. There was a statue of a stegosaurus right in front of us.

When we drove into the driveway there were dinosaur balloons on the porch and you thought that that was just great...Thanks to the Raymond family.

We had dinner together and it was like night and day, you asked for everything under the sun. Daddy and I were so pleased.

The nurse came to set you up for hydration last night and that went very well. Your mommy is becoming quite the nurse these days.

When the nurse left, of course the pumps started beeping, with my five minute lesson, I was able to flush it and restart it all. Thank goodness otherwise we would probably have been driving back down for hydration at the hospital.

8pm came, that is medicine time now 3 medicines that really don’t taste that great. We struggle through it, but we manage.

You had a wonderful sleep in your bed and only called out once in the night.

When you woke this morning, we turned off the pumped, flushed and heplocked your central line.

We came down for breakfast and you wanted toast with Jam, so mommy got a bit smarter and put your most important medicine in the jam and spread it on your toast...you loved it, you said it was so good.

We had a great day, we played, we watched some TV, read some stories and then you took a nap.

When you woke up, you and I went for a walk to the mail box on your request and once we stepped outside, you said it was to cold. I tried to tell you but you did not want to listen.

You did not really do great on dinner or your fluid intake today, but we will continue to work on that tomorrow.

You took you medicine a little better tonight and then chased it down with milk. Daddy told you, you could have some popcorn, so you are now sitting on the couch eating it.

You turned to me and said, "Mommy I have a heart, and you are in it" GO HABS GO"
I cried and you wiped my tears away, like you always do, when you see me cry.

Ryan you have such a wonderful heart and personality.
I want to thank you for giving me the opportunity to be your mom. I am so very honoured and proud.

I love you more each day.

Love
Mommy.

Tuesday, March 10, 2009

March 10- Day + 32

Ryan,

YOU DID ITWE ARE GOING HOME TODAY! HOORAY!

You are still finding it hard to take those meds, but we get trough them every time.

Counts today:

WBC- 2.1
RBC -81
PLT - 103
POLY'S - 0.78

Ryan, for everyone that reads your blog, I will continue to post. It may not be everyday, but it will be on any milestones, clinic days or any major hurdles or triumps that we face.
For the first week that we are home, I will post as we are still doing home hydration and nurses will be coming to the house to monitor you.

Love Mommy,

Monday, March 9, 2009

March 9th - Day + 31

Ryan,

You had a good day yesterday, with the exception of taking your medication.
I don't blame you as they taste horrible. It is aweful to watch you struggle with this.

We walked the halls and played with your toys.
Your sister Kayla came down for lunch and you had such a nice visit.
Gramma and Grandad came later in the afternoon on there way back to Montreal, and you made a wood boat with Grandad which we painted last night and you decided to call your boat, Pika Grandad.. (I am sure your grandad would be proud to be part of the pokemons)

Auntie Nicole, Uncle Shayne and the boys were going to come, but Ethan and Aidan were just getting over there coughs so did not want to give you any germs.

Your counts yesterday were

WBC- 2.3
RBC -88
PLT -88
Poly's 1.0

You have woken up this morning and taken your medication a little bit better, but still with some tears. We have taken a walk downstairs and your feet and legs are now in need of a rest.

One of the nurses just came in and told us we will probably go home on Wednesday. I have questioned this as we were told probably today. They say you are ready but I guess there is a lot more to do then just letting us leave. You are in need of over night hydration, so you have to get hooked up to IV at night at home, so a nurse will have to come and visit us each day.

So we will wait to see what the verdict is on your discharge.

Your counts today :

WBC- 1.7
RBC- 101
PLT - 88
Poly's - .56

Daddy has dropped Ally off and is off to work for the day, I am sure he will be in to visit you at some point today.

So now it is just a waiting game to see when we can go home and resume a some what of a normal life.

Ryan you have done an amazing job.
I want to thank your sister Ally for giving you a chance of beating this disease.
Ally you are an angel that was sent from god to help your brother. Daddy and mommy are so very proud of you. When you are older, you will understand what an amazing thing you have done.
I want to thank your Auntie Nicole and Uncle Shayne for taking Ally in to your home for the last 4 months on and off in order to help us out. And for organizing the blood drive in Milton.
Your Grandma and Grandad for coming every second weekend to help us out at the house and getting it ready for you to come home.
Your daddy's family for keeping in touch and sending support our way every day and for the visits we received just before Christmas and during Christmas.
The Thomas and Dos Santos family for all there support.
Kayla's mommy's family for all there support.
Tina and her entire family for everything they have done for our family.
All of our neighbours and friends for everything they have done.
Sylvie, Bill, Karen, Jeff and there family for all of there support.
Craig for his help with the webiste and keeping it updated.
Maggie, Trish, Shirly and there families for putting together a blood drive in Montreal.
The Hospital for sick Kids ( doctors, nurses and staff ) they have made our stay here as enjoyable as it can possibly be. Ryan acutally probably would not mind staying. There is way more to do here than at home.

Really mommy just wants to thank everyone for all the support we have received during this very difficult time.

Ryan,

You are looking good, and mommy and daddy send you all the positive vibes that you need to continue to do well and fight this disease. We will, as a family take it one day at a time, we will celebrate every success and we will fight every hurdle that comes our way.
Together we can do this and one day we will look back on this as a bump in the road.

We all love you,

Mommy.

Saturday, March 7, 2009

March 7th- Day + 29

Ryan,

Mommy took a day to herself yesterday, it has been a long time since I have done that, and I am not complaining, but it was needed.

Yesterday was the day of the fundraiser for our family that your Aunt Tina, Sherry, Steve, Stevie and Dinni and her family, and the rest of the Hammond family put together. Mommy and Daddy thank them all from the bottom of our hearts.

Ryan, when god gave out best friends, your mommy got the best one, your Aunt Tina is one amazing woman, so warm and giving and always there for everyone. I can only hope that one day you are a lucky as I am, and find a friend that you can call your best friend.

Ryan, Lisa Raitt (MP for Halton and minister of Natural Resourses) her husband Dave and two sons also came out to support us last night.

Wendy and her husband, came representing the mayor of Milton.

Ryan you would have loved it, there was so many people there who are praying for you, so many of your friends were there, and all I could think was Ryan would love to be here.

Mommy wants to take this oppurtunity to again, thank everyone who has supported us in any way through this journey. We love you all.

Mommy would also like to announce that you can all do " THE POLY DANCE"
RYAN HAS ENGRAFTED!!!!!!!!!!!!!!!!!!
RYAN I THINK THE ANGELS HEARD US ALL ROARING LAST NIGHT!

I have already danced and cried this morning, what great news Ryan YOU DID IT.
We could not be more proud of you.

You told daddy this morning, "Daddy can I walk the halls today, because it has been a very long time"

Ryan, you can and it will only get better from here, soon you will be home and we will be able to have alot of family time and in time you will be able to see all your friends. We will take it one day at a time.

Counts today:

WBC -1.4
RBC - 81
PLT - 65
Poly's - 0.53 YEAH

Ryan, Grandad is with you now, because your daddy was not feeling well and did not want to get you sick and mommy will be there tonight to celebrate with you.

Love always,

Mommy

Thursday, March 5, 2009

March 5th - Day + 27 addtional news

Ryan,

I decided to post yet again today!
I thought it was important to let every one that is following your blog know that your Dr's have been in this morning and said you are doing great.

Actual polys are: 0.37 not 0.34 so even better than I thought earlier this morning.

So they have decided that if you engraft over the weekend and you continue to eat and drink like you are :

You Guessed it:


WE ARE GOING HOME NEXT WEEK!!!!!!!!!!!!!!

I am so looking forward to you sleeping in your own bed, being with your family in your own home and getting back to a "new" normal kind of life.

We all love you so much, this is not the end of the journey, but one step closer to what we all pray for, "a wonderful outcome "to this bump in the road.

Mommy

March 5th- Day + 27

Ryan,

You had a fantastic day yesterday.
The dr's came in yesterday morning that as you were eating small amounts they would be taking you off of your food suppliments. They also said that they would balance your electrolytes if needed as that was being balanced in the suppliments as well.

So needless to say you have got over another hurdle. With that being said, they are expecting 1250ml in fluid a day. 750 ml to be giving in over night hydration ( IV) and the rest you have to do. So I am proud to say that yesterday you were able to get down 505ml. Another stepping stone accomplished.

You ate a good dinner considering, 1 chicken finger, 3 pieces of brocolli and some cucumber.
I guess the TPN suppliment really did keep you full.

We watched some TV again last night ( you guessed it Jurrasic Park # 2) and then you wanted to watch Youtube. I was asking myself how does he know about youtube and videos and you keep saying "mommy, daddy lets me watch the snake eat the rat" Nice Dave.
I watched one video and had to draw the line as I don't like to look at them. Ryan is now asking for a snake as a pet and he can keep it in a cage in his room. (I dont think so)

Mary Sunshine will be in today to see Ryan later today and Dave will be here tonight to take over.

The Dr's seem to think that you will be in step down early next week. Ryan I can not wait, you will be able to walk the halls soon.

Your counts today:

WBC- 1.4
RBC - 88
PLT -54
Poly's 0.34 we are now only 0.16 away from our poly dance.

This morning you asked me for a hot chocolate from Tim's but the nurse said no. It was a good thing that I had instant hot chocolate here, so I made you some with hot milk. I put it into a tim's cup so you did not know the difference and you have drank the whole cup. I have no dought that you will reach the 500 ml that you need to acheive today.

Mommy's next task it getting our family back together slowly once you are home, I am sure it will take some time, but in the end we will all be together again. I can not wait.

Keep up the great work Ryan.

Hug and Kisses
Mommy

Wednesday, March 4, 2009

March 4th Day + 26

Ryan,

Before I start today's blog, I need to apologize to everyone who is reading for my poor spelling and puntuation. It was brought to my father's attention yesterday that I am my father's daughter. I guess it is in the genes. Thanks Robin. I guess with that being said I can admit I am not the greatest speller and am not always sure where to put my comas, but in my defense I do write fast and do not check the spelling as Ryan is always looking for something or needs me, so before I bind it for Ryan it will have to be reviewed. On another note, there is no spell check on here that I can find, that would be a great help.

Ryan,

You had a wonderful day yesterday, you ate a nice picnic lunch on the ground with your dinosaurs. You had a 1/4 of a grilled cheese sandwich and some brocolli with a glass of milk.
Your liquid intake yesterday was 260ml, all the nurses were impressed.

Mary sunshine came to visit and let you borrow a batman until Thursday night, she told you that you could have him for 2 sleeps. You were so nice that you gave her something to keep until Thursday as well.

Your counts today:

WBC: 1.3 (up a little )
RBC- 88
PLT - 53
Poly's - 0.24 slowly rising.

I think we may have to put our shoes on hold to do our dance until next week. Take you time sweetheart, all that matters is that you get better and beat this. So, if it takes a bit longer for us to get our dance that is ok with me.

Your breakfast today has started off poor, you will not eat anything, but you keep telling me you are hungry, so hopefully we can get lunch in and some more liquid.

Mommy is going to lunch today with Sylvie. Karen, unfortunatley is unable to make it, so hopefully I will see her tomorrow for coffee.

Daddy will be coming around noon to have lunch with you. I am sure you will have him on the floor with your dino's for a picnic as you will be un-locked from Fred for a few hours.

Hope you have a great day today Ryan

Love,
Mommy.

Tuesday, March 3, 2009

March 3rd - Day + 25

Ryan,

Last night you had a bit of a reaction to one of your medicines so Ashley gave you some benadryl. You fell asleep at 7:30 and did not wake until 8:30 this morning. What a great sleep.

You are giving me a hard time taking the medicine that the Dr's want you to take. I dont blame you, it does not taste very good. So I have put it into your milk in hopes that you will drink it.
You did manage to get 1/4 of a hard boiled egg down, and a bite of bacon. We will continue to try through out the day.

Mary Sunshine is here today, that I know you will enjoy. They have now asked her to come in the morning for you, as you seem to fall asleep in the early afternoon and have missed her a few times.

Daddy will be down for a visit around noon, so that will be nice for you and for mommy, a we did not get to see him yesterday.

Your counts today are:

WBC- 1.1 down from yesterday
RBC- 88
PLT - 44
Poly's 0.19

Dr.Gassas say you are taking you time, and I am not surprised as you have alway been a a little boy that does things in his own time, you can not be pushed to do something. I think you get that from me.

Ryan we are getting closer to your poly dance. We are only 0.3 away from it. My toes are starting ot get ready. I can not wait for you to be able to get out of this room and walk the halls.
Maybe once we are out of the room, you will be more inclined to eat and drink and do what we use to do.

Then it will be getting back to our old routine once we are home. Wow, home that sounds so nice..I can not wait for you to be back in your surroundings and enjoying all your toys, your room, your stool at the breakfast bar. The little things. I am so looking forward to this day,as I am sure you are to.

Love you,
Mommy
XXXXXX

Monday, March 2, 2009

March 2nd- Day + 24

Ryan,

Last night when you were falling asleep, you asked me for the Angel that hand on Fred.
It has Alexandria's name on it and you told me you were thinking of her and that she was your angel. Ryan you are so right, she is your Angel.

Daddy, Kayla , Ally, Gern , Carol Ann and Mike had a nice dinner last night at Jack Astor's, Kayla was going to go home with Daddy and ally, but got sad that you were not going to be there.
I told Daddy to tell KK that you will be home before we all know it.. What a day that will be.

Your white counts today are 1.3. Horray!!!!!
The Dr.'s have been in and said that you are taking your time. They are worried that you are not eating yet, but this is also common after transplant. They will be giving you a medicine to stimulate your tummy to want to eat.

You are doing better, but I guess not enough that they think you can sustain your weight.

So counts today:

WBC - 1.3
RBC - 94
PLT -44
POLY's - 0.10 they have gone down. This can happen as it all depends on the sample they get.

When Dr. Gassass came in he said that the poly's went down, but the mono's are coming up and we usually see that before the poly's rise..so he thinks they are on there way up.

It is very cold outside today from what the nurses tell me and you are in a very good mood today.

You have been asking to do your own blood withdrawls and the nurses are letting you help.
I think Dr. Mira was shocked when she came in and saw you pulling back the needle to get your blood out.

Your are sleeping now as I write, as you were up at the crack of dawn this morning.

Sweet Dreams,
Mommy.

Sunday, March 1, 2009

March 1st- Day + 23

Ryan,

Mommy is back, and I heard that you had a rough night on Friday after I left.
Daddy said that you were sick every hour on the hour. Mommy was so sad that you were not feeling well. But daddy has told me that since Saturday morning you are back to your normal self, feeling much better in yourself.

I got to talk to you on Skype on Saturday night at 10pm and you were in a great mood and talked to me forever. I am so glad to see you are feeling more like yourself.

I got to you Aunt's house and had dinner with Ally and put her to bed. I was going to bunk in with her that night, but Ethan and Aidan had a sleepover in Ethan's bed, so I got Aidan's room and it was the best sleep ever, plus Auntie Nicole said Ally would sleep longer if there was no one else in the room. That worked for me. Thanks Aidan.
Ryan Aidan's bed is the best sleep in the house.

Ally and I went out and ran some errands on Saturday and of course ended up at the mall. Such a girl thing to do.
She was not pleased, and by the time we left she was over tired and cried all the way home.
I am not sure if it is poor Ally or poor Mommy.

She napped from 2- 4 and then we went to Sherry, Steve's and Stevies and met Aunt Tina there.
We had a nice dinner and then I took Ally home to put her to bed.

This morning we had Cameo, Nick, Charlotte and Gabriel over and we also had Michelle, Savannah and Carlisle over. Jamie, Melanie and Colby stopped by and dropped over some of Jamie's yummy birthday cake and then we had Katherine over for tea this afternoon.

Ally and I then drove back to the hospital where Daddy and I did the trade. He has now gone to meet Kayla for dinner at Jack Astor's with Ally.

Your counts have not really changed since Friday, we are holding at

WBC - 0.7
RBC -89
PLT - 48 going up
Poly's - 0.13 a bit more and closer to step down.

Dr. Gassas ( transplant Dr) came in to talk to Daddy and told us everything is going well and that it is a bit early for GVHD. So we will wait and see what this week brings. Friday is the day they take your blood to find out what percentage of cells are Ally's and what percentage are yours.
We want them all to be Ally's so we will pray for that this week. Those results will take about 2 weeks. We also hope that you are in step down this week and are able to walk the halls with a mask.

Keep up the great work Ryan. We are all so proud of you.

Love Mommy

XXXXXXXX