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
Thursday, February 5, 2009
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.
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
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
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.
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
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.
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.
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