Ryan,
Look how far you have come, day + 208 from transplant.
You seem to be doing great! It is hard for us to know with out the fish test. But on the other hand you look great and everyone who see you says the same thing.
I was putting Ally to bed tonight, and I told her she was your Angel. She said " YEP"
I think people look at me and think that I am over the top now, Ryan. Things that I use to let go, like a cough or a sore throat or a fever in the first days, now I am on it right away, making sure that know one who has been sick or is sick comes near you. Paranoid, maybe? But better safe than sorry. I would never be able to forgive myself if you were to get sick and something happened to you because I should have been smarter. I wish I could go back to being more care free but I think this is the new me. You get upset if I tell you, that you can not go somewhere because someone is sick, but this is our new life and I know once you are old enough to understand you will thank us for keeping you so safe.
You are so carefree and I worry constantly. Remission, a word that to me is like a ticking time bomb, you never know if it will go off or just remain the same . What a way to live, in fear, every minute, every day wondering what will happen next. I try so hard to stay positive but at the same time know the reality of what we have been giving to deal with . Five years is a long time and for the next five years, life will be different. And even after that it will never be the same .
Cancer has touched us in a way that is very painful. Daddy and I have spent many night in tears, wondering why. Of course with no answer and no reason that we can think of that this has happened to you and us as a family.
We will have to re think family trips, wondering what tomorrow holds.
Each day that I have with you and Ally is a blessing and I am so very thankful for them.
What I do know, is that I love each and every day we have and will continue to enjoy our family time, I will continue to fight for you and cheer you on through each bump and each milestone you accomplish.
You have spirit and you have fight, and Ally is a fighter so together I think you guys could pretty much accomplish anything...
Love you and I hope you are amazed and have a wonderful time at Walt Disney World Florida..
You deserve it all and I know you sisters are so looking forward to this time with you ...
Mommy...
XXXXXXX
Tuesday, September 1, 2009
Saturday, July 25, 2009
July 25th Day + 169
Ryan,
Mommy has had some emotional weeks, so I thought I would write to you again.
Although you are doing so well, I still have problems taking it all in. I think about it every day. Wondering, what will tomorrow bring. And hoping that it brings only good things our way from now on. Since your visit on July 8th, and all the news was still very positive, you have been full of life, full of energy and acting like a typical 4 year old boy.
You have had a blocked line, so we were in hospital trying to unblock it. Then 2 days later a hole in the line. I was a mess, I put you in the bath tub and saw blood running down your chest. I was scared, so back to the hospital we went. We were there for 4 hours and they sent us home with clamps above the hole so you did not bleed anymore.
We got a call from the nurse to tell us your lines would be taken out in a week. We panicked some more. The night before your surgery we got another call, stating you had been bumped and that it would be a day later. Mommy took you down and we waited all day with no food. I have to admit for a little boy who did not eat from midnight until 6 pm the next day. You made me proud. I could not eat in front of you, but by 2pm, all I wanted to do was eat, but I managed to keep us both busy with toys, books and the nurses were a great help, dressing you up like a DR.
I really do think that you are going to be the DR in the family. All you ask for is DR stuff, dress like one and tell us you are going to fix children when you are older. Go for it honey, I am behind you all the way, and if you change your mind at some point that is perfectly fine to. We are proud of you no matter what.
You have been granted your wish to Disney by the Children's wish foundation, and we are so fortunate to be going in just over 5 weeks. We leave on September 5th and come back on September 12th..What a week we are going to have. Mommy has already started planning and looking up everything that we can do. Florida here we come!!! We can not wait to spend so real family quality time together.
Daddy and I are signing up with the Children's wish foundation to walk with them this year and raise money for other children with life threatening disease's just like you. We want them to have any wish that they may want to come true. Ryan this charity is truly amazing! It gives families like us and others that are in our shoes the chance to do something great, after going through something so awful. We are grateful to the Children's wish foundation and all who donate to the cause.
I have delayed you going to school due to my own fears, but the way I see it is, it is only another 4 months from when school starts until January so really what will you miss in Jr. Kindergarten.
Mommy has also decided to go back to work to get back to our normal life. You have already asked me if I can go now as you are so looking forward to going back to daycare in September.
Mommy will be returning on September 14th as I have to find daycare for your sister Ally and make sure she settles in well.
Ryan, I love you so very much and one day when you are a little bit older you will understand all that you went through so much more. So many people had a part in your road and your recovery, but in the end, you had to do the fighting and you are truly an amazing little boy. We could not be any luckier. You are here with us and fighting like a champion. Keep fighting Ryan, don't ever give up.
Love Mommy.
Mommy has had some emotional weeks, so I thought I would write to you again.
Although you are doing so well, I still have problems taking it all in. I think about it every day. Wondering, what will tomorrow bring. And hoping that it brings only good things our way from now on. Since your visit on July 8th, and all the news was still very positive, you have been full of life, full of energy and acting like a typical 4 year old boy.
You have had a blocked line, so we were in hospital trying to unblock it. Then 2 days later a hole in the line. I was a mess, I put you in the bath tub and saw blood running down your chest. I was scared, so back to the hospital we went. We were there for 4 hours and they sent us home with clamps above the hole so you did not bleed anymore.
We got a call from the nurse to tell us your lines would be taken out in a week. We panicked some more. The night before your surgery we got another call, stating you had been bumped and that it would be a day later. Mommy took you down and we waited all day with no food. I have to admit for a little boy who did not eat from midnight until 6 pm the next day. You made me proud. I could not eat in front of you, but by 2pm, all I wanted to do was eat, but I managed to keep us both busy with toys, books and the nurses were a great help, dressing you up like a DR.
I really do think that you are going to be the DR in the family. All you ask for is DR stuff, dress like one and tell us you are going to fix children when you are older. Go for it honey, I am behind you all the way, and if you change your mind at some point that is perfectly fine to. We are proud of you no matter what.
You have been granted your wish to Disney by the Children's wish foundation, and we are so fortunate to be going in just over 5 weeks. We leave on September 5th and come back on September 12th..What a week we are going to have. Mommy has already started planning and looking up everything that we can do. Florida here we come!!! We can not wait to spend so real family quality time together.
Daddy and I are signing up with the Children's wish foundation to walk with them this year and raise money for other children with life threatening disease's just like you. We want them to have any wish that they may want to come true. Ryan this charity is truly amazing! It gives families like us and others that are in our shoes the chance to do something great, after going through something so awful. We are grateful to the Children's wish foundation and all who donate to the cause.
I have delayed you going to school due to my own fears, but the way I see it is, it is only another 4 months from when school starts until January so really what will you miss in Jr. Kindergarten.
Mommy has also decided to go back to work to get back to our normal life. You have already asked me if I can go now as you are so looking forward to going back to daycare in September.
Mommy will be returning on September 14th as I have to find daycare for your sister Ally and make sure she settles in well.
Ryan, I love you so very much and one day when you are a little bit older you will understand all that you went through so much more. So many people had a part in your road and your recovery, but in the end, you had to do the fighting and you are truly an amazing little boy. We could not be any luckier. You are here with us and fighting like a champion. Keep fighting Ryan, don't ever give up.
Love Mommy.
Wednesday, July 8, 2009
July 8th, 2009 Day + 152
Ryan,
Another great day at SKH. Dr. Gassas is thrilled with your progress. 5 months in remission. 5 months post transplant. You are a trooper.
He asked me if I was happy? All I could stay was I was thrilled to know that you are doing so well. He also re mined me of the severity of your disease. It is like a flip of a coin! 50% we will not see this again and 50% that it could come back at any time.
He said, Suzanne, when we get to a year in remission we sigh, when we get to two years we say phew. He said the longer you remain with no cells of your own the chances of them coming back weaken. This is what I pray for. That your sister has done her part and weakened your cells from returning. Let's hope and pray.
Dr. Gassas, has confirmed he has started the process to have your central line removed, and that you are now able to go places with out your mask, you may also travel to Montreal and he has given you the OK to travel to Disney World for your wish, through the Children's wish foundation.
Wow, Ryan we can go on a family trip together. This is something that we could all use and look forward to. I will be starting that process tomorrow.
We can stop your medication Septra and we will continue on Penicillin for a full year!
Really this is like a ticket to get back to our old life and knowing that we still have to make well judged decisions for you.
Mommy, will be looking at all options in the up coming months as to what is best for our family.
I have to decide about going back to work, daycare for you and Ally.
Dr. Gassas has said you can go to school, I said no, and he said Why? I told him I was not comfortable and will most likely wait until January. He made a good point about you getting back to a normal life and having something to do, something to enjoy, meet new friends and be like all the other kids your age.I am looking at the options, but still don't think that 4 months will make that much of a difference.
Your next appointment, believe it or not is not until September 8th. A full two months away.
Ryan, Hope is a wonderful word, a word that I have continued to see through out this journey with you. It is a word I hold on to, you need to hold onto it too.......
We love you and are glad you are doing so well...Keep it up sweetheart....
Love always,
Mommy.
Another great day at SKH. Dr. Gassas is thrilled with your progress. 5 months in remission. 5 months post transplant. You are a trooper.
He asked me if I was happy? All I could stay was I was thrilled to know that you are doing so well. He also re mined me of the severity of your disease. It is like a flip of a coin! 50% we will not see this again and 50% that it could come back at any time.
He said, Suzanne, when we get to a year in remission we sigh, when we get to two years we say phew. He said the longer you remain with no cells of your own the chances of them coming back weaken. This is what I pray for. That your sister has done her part and weakened your cells from returning. Let's hope and pray.
Dr. Gassas, has confirmed he has started the process to have your central line removed, and that you are now able to go places with out your mask, you may also travel to Montreal and he has given you the OK to travel to Disney World for your wish, through the Children's wish foundation.
Wow, Ryan we can go on a family trip together. This is something that we could all use and look forward to. I will be starting that process tomorrow.
We can stop your medication Septra and we will continue on Penicillin for a full year!
Really this is like a ticket to get back to our old life and knowing that we still have to make well judged decisions for you.
Mommy, will be looking at all options in the up coming months as to what is best for our family.
I have to decide about going back to work, daycare for you and Ally.
Dr. Gassas has said you can go to school, I said no, and he said Why? I told him I was not comfortable and will most likely wait until January. He made a good point about you getting back to a normal life and having something to do, something to enjoy, meet new friends and be like all the other kids your age.I am looking at the options, but still don't think that 4 months will make that much of a difference.
Your next appointment, believe it or not is not until September 8th. A full two months away.
Ryan, Hope is a wonderful word, a word that I have continued to see through out this journey with you. It is a word I hold on to, you need to hold onto it too.......
We love you and are glad you are doing so well...Keep it up sweetheart....
Love always,
Mommy.
Monday, June 15, 2009
June 15th -Day +128
Ryan,
I saw this saying by Lance Armstrong and liked it alot, so I thought I would put it in so you could read and see this one day.
If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.
We got more results today from last weeks fish test. You are still in remission. Yippppeeeee! Fighting like hell is how I take this result.
Funny, I feel wonderful and thrilled about the news, yet still sad in some ways. I can not help but watch and think of our future, what it holds, etc.
I know many people are probably thinking what am I saying here, but as your mother, I am thrilled about the news, but anxious about the next test and the one after that..It is always right there, staring me in the face.
Daddy told me last night, we have to deal with this for a very long time, and even you being in remission, do not mean that every couple of weeks we have to await these results. It is so hard and every day that we get closer to a result, I feel I get a little more freaked out and my days become harder and harder to deal with.
Ryan, I have had some bad days recently and I am hoping that I can get them under control!
I cry alot and watch you alot and take in every minute of every day with you.
We are trying to get back to a normal routine and Daddy and I have many things to figure out in the next couple of months.
Hopefully in a few months we can contract Children's wish foundation and let them know we are ready to go ahead with the trip to Disney. I know you will love it. Mommy just wants to make sure you are ready to go and that we do not do to much to soon.
I love you baby...
Mommy.
I saw this saying by Lance Armstrong and liked it alot, so I thought I would put it in so you could read and see this one day.
If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.
We got more results today from last weeks fish test. You are still in remission. Yippppeeeee! Fighting like hell is how I take this result.
Funny, I feel wonderful and thrilled about the news, yet still sad in some ways. I can not help but watch and think of our future, what it holds, etc.
I know many people are probably thinking what am I saying here, but as your mother, I am thrilled about the news, but anxious about the next test and the one after that..It is always right there, staring me in the face.
Daddy told me last night, we have to deal with this for a very long time, and even you being in remission, do not mean that every couple of weeks we have to await these results. It is so hard and every day that we get closer to a result, I feel I get a little more freaked out and my days become harder and harder to deal with.
Ryan, I have had some bad days recently and I am hoping that I can get them under control!
I cry alot and watch you alot and take in every minute of every day with you.
We are trying to get back to a normal routine and Daddy and I have many things to figure out in the next couple of months.
Hopefully in a few months we can contract Children's wish foundation and let them know we are ready to go ahead with the trip to Disney. I know you will love it. Mommy just wants to make sure you are ready to go and that we do not do to much to soon.
I love you baby...
Mommy.
Wednesday, June 10, 2009
June 10th- Day + 123
Ryan ,
We went to SKH today for a check up!
Dr. Gassas was on vacation so mommy was a little upset that it has been so long since we have actually spoken to a Dr. I had a lot of questions and I asked the nurse if I could ask her the questions and if she could not answer then to refer me to a Dr. They were OK with this.
She examed you and said that she can not feel your spleen....this is good news.
She said you looked great, so we must be doing something right.
Chris took your blood and sent it away for the CBC, Bio Chem, results that we get with in an hour. Everything looks great! Your fish test has been sent out and we should have an answer on Monday. This will tell us if you are still holding all of your sister's cells....Crossing fingers....
We are allowed to take you to Montreal for a weekend as they have a transplant center at St. Justine's Hospital and should we run into any problems we can take you there....this is good Ryan we can go away for a few days and get away from our house....
If all stays 200/200 for the next couple of tests you can get your central line removed hopefully and go to school in September as per the hospital...Mommy and Daddy have decided to keep you out of school until January as precaution. Ryan there are just to many risks involved. Your immune system will not be back to full strengh and we do not want to take any chances.
You also may be able to go on your wish with Children's Wish in September or October depending on results and if your line is out. I know you want to go to Disney so bad...
We will get you there, Ryan.
Mommy is trying to get back to a normal schedule and will work out the details in the next few months....before I make any changes I need to see that you stay in remission for more than just one blood test..Maybe that is silly of me, but I want to make my decision based on the best information possible...and if you need me for a longer period of time, this is where I will be ...but if you continue to do well, it may be best for you to get back to your normal life with your friends and school, activities, etc.
Love ya lots,
Mommy
We went to SKH today for a check up!
Dr. Gassas was on vacation so mommy was a little upset that it has been so long since we have actually spoken to a Dr. I had a lot of questions and I asked the nurse if I could ask her the questions and if she could not answer then to refer me to a Dr. They were OK with this.
She examed you and said that she can not feel your spleen....this is good news.
She said you looked great, so we must be doing something right.
Chris took your blood and sent it away for the CBC, Bio Chem, results that we get with in an hour. Everything looks great! Your fish test has been sent out and we should have an answer on Monday. This will tell us if you are still holding all of your sister's cells....Crossing fingers....
We are allowed to take you to Montreal for a weekend as they have a transplant center at St. Justine's Hospital and should we run into any problems we can take you there....this is good Ryan we can go away for a few days and get away from our house....
If all stays 200/200 for the next couple of tests you can get your central line removed hopefully and go to school in September as per the hospital...Mommy and Daddy have decided to keep you out of school until January as precaution. Ryan there are just to many risks involved. Your immune system will not be back to full strengh and we do not want to take any chances.
You also may be able to go on your wish with Children's Wish in September or October depending on results and if your line is out. I know you want to go to Disney so bad...
We will get you there, Ryan.
Mommy is trying to get back to a normal schedule and will work out the details in the next few months....before I make any changes I need to see that you stay in remission for more than just one blood test..Maybe that is silly of me, but I want to make my decision based on the best information possible...and if you need me for a longer period of time, this is where I will be ...but if you continue to do well, it may be best for you to get back to your normal life with your friends and school, activities, etc.
Love ya lots,
Mommy
Tuesday, June 2, 2009
June 1st -Day + 115
Ryan,
So you Nana in Ireland called last night to tell us that your Uncle Phillip and Cousin David, went to the Gratto.....Many people have gone to this Grotto in Ireland and placed things about a person who needs to be healed. So they placed the dinosaur that you gave your Uncle Phillipo to remember you by when he was here and a scanned picture of you. Dave went back up to see it and from what I gathered from the conversation is that someone put candles to help heal there loved one and everything on the Grotto was burned. David said the only thing that remained was your picture....Daddy and I talked about what we thought this meant and we have chosen to believe that someone is watching over you and protecting you..
Ryan you are doing great and are now taking your medicine with no problems at all.
I think the fact that we are bribing you with freezes and Popsicles.
Your hair is starting to come in, and it is coming in very nice, not in patches....it feels like a new born babies head....so soft....
Your tummy still bothers you and your bowl movements are still more frequent than most people, this will take time...All the chemo that gave you mucocitis I think has affected your tummy in some way. Some people get Graft VS Host of the gut...I do not think you have this, but I keep telling myself that your tummy and bowl issues may be what is keeping you in remission.
My belief is that Ally is attacking you in some small way. This keeps me positive.
I still have my bad days, days when I just cry for no reason, days that are just worse than others.
I watch you sleep and play with your friends and see the joy you have in everything that you do .
Ryan, continue to let Ally fight inside you and continue to be the wonderful little boy that you are.
Mommy.
So you Nana in Ireland called last night to tell us that your Uncle Phillip and Cousin David, went to the Gratto.....Many people have gone to this Grotto in Ireland and placed things about a person who needs to be healed. So they placed the dinosaur that you gave your Uncle Phillipo to remember you by when he was here and a scanned picture of you. Dave went back up to see it and from what I gathered from the conversation is that someone put candles to help heal there loved one and everything on the Grotto was burned. David said the only thing that remained was your picture....Daddy and I talked about what we thought this meant and we have chosen to believe that someone is watching over you and protecting you..
Ryan you are doing great and are now taking your medicine with no problems at all.
I think the fact that we are bribing you with freezes and Popsicles.
Your hair is starting to come in, and it is coming in very nice, not in patches....it feels like a new born babies head....so soft....
Your tummy still bothers you and your bowl movements are still more frequent than most people, this will take time...All the chemo that gave you mucocitis I think has affected your tummy in some way. Some people get Graft VS Host of the gut...I do not think you have this, but I keep telling myself that your tummy and bowl issues may be what is keeping you in remission.
My belief is that Ally is attacking you in some small way. This keeps me positive.
I still have my bad days, days when I just cry for no reason, days that are just worse than others.
I watch you sleep and play with your friends and see the joy you have in everything that you do .
Ryan, continue to let Ally fight inside you and continue to be the wonderful little boy that you are.
Mommy.
Monday, May 25, 2009
May 25th - Day 108 200/200
Ryan,
Ally did it, she has conquered your troops. We got the call this morning! You have 200/200 doner cells (Ally's cells) You have 2 amazing sisters. Ally who has given you this gift and Kayla who has been there by your side through it all. She has supported you and visited you in the hospital and they both love you so much.
We are taking this news and running with it. Today, tomorrow and everyday that we have with knowing you have 200/200 cells. We are over the moon!
Ryan it has been a long road and unfortunately it is not over by any means. I am not being negative, but realistic. It has been a bumpy roller coater for the last 6 months and I am worried if I get to happy I will get let down again. I want to believe that this was just a bump in our life, a shift in our plan that has now been put to rest and we can continue with nothing but good news and a great outcome to an awful disease..
Ryan you have come so far and we are all so proud of you.
Sibling fight for siblings and all three of you have shown great strengh in dealing with this awful disease at such young age. Ryan you and Ally don't really understand what is going on, only that you are sick and Ally is making you better, but Kayla gets it. She understand how serious this is and what is at risk and she has been so brave and strong. You could not ask for two better sisters.
I also want to thank you and your sister's for giving Daddy and I the strengh to get through this every day for the past 6 months. Although I don't know what the future holds, the one thing I do know is we have a great family and a great support system, so whatever the future hold we will deal with as a family and knowing we have so much support means the world to us.
So ryan, I want to thank everyone who has supported us through this and continues to do so, your family in Montreal ( your gramma and Grandad) our family in Ireland ( Nana, your Aunts and Uncles and cousins and there families), your Auntie Nicole and Uncle Shayne.
All of our neighbours, our dear and close friends, you all know who you are.
messages, phone calls just to say hello and see how we are. Shoulders to cry on, (that we have done alot of.) Blood clinics in your honor, family running marathons in your honor, fundraising in your honor. The list goes on and I can only tell everyone that it has helped in any way that they are amazing people who deserve the very best.
We are going to celebrate this tonight! I am not really sure how as we are limited in what we can do, but we will celebrate that I know for sure.
Love you
Mommy
XXXXXXXXXX
Ally did it, she has conquered your troops. We got the call this morning! You have 200/200 doner cells (Ally's cells) You have 2 amazing sisters. Ally who has given you this gift and Kayla who has been there by your side through it all. She has supported you and visited you in the hospital and they both love you so much.
We are taking this news and running with it. Today, tomorrow and everyday that we have with knowing you have 200/200 cells. We are over the moon!
Ryan it has been a long road and unfortunately it is not over by any means. I am not being negative, but realistic. It has been a bumpy roller coater for the last 6 months and I am worried if I get to happy I will get let down again. I want to believe that this was just a bump in our life, a shift in our plan that has now been put to rest and we can continue with nothing but good news and a great outcome to an awful disease..
Ryan you have come so far and we are all so proud of you.
Sibling fight for siblings and all three of you have shown great strengh in dealing with this awful disease at such young age. Ryan you and Ally don't really understand what is going on, only that you are sick and Ally is making you better, but Kayla gets it. She understand how serious this is and what is at risk and she has been so brave and strong. You could not ask for two better sisters.
I also want to thank you and your sister's for giving Daddy and I the strengh to get through this every day for the past 6 months. Although I don't know what the future holds, the one thing I do know is we have a great family and a great support system, so whatever the future hold we will deal with as a family and knowing we have so much support means the world to us.
So ryan, I want to thank everyone who has supported us through this and continues to do so, your family in Montreal ( your gramma and Grandad) our family in Ireland ( Nana, your Aunts and Uncles and cousins and there families), your Auntie Nicole and Uncle Shayne.
All of our neighbours, our dear and close friends, you all know who you are.
messages, phone calls just to say hello and see how we are. Shoulders to cry on, (that we have done alot of.) Blood clinics in your honor, family running marathons in your honor, fundraising in your honor. The list goes on and I can only tell everyone that it has helped in any way that they are amazing people who deserve the very best.
We are going to celebrate this tonight! I am not really sure how as we are limited in what we can do, but we will celebrate that I know for sure.
Love you
Mommy
XXXXXXXXXX
Wednesday, May 20, 2009
May 20th - Day + 104
Ryan ,
At the hospital last Wednesday your cells had increased from 5 to 8. I think we were all under the impression we would be heading for a second DLI on May 27th. Mommy was worried that the cells being 8 were based on a test that was done on May 4th and we were now coming up to May 15th so I called the hospital looking for the results that were done on the 13th of May.
When I called they said that they had not received them back, but not to worry. It was the long weekend so I knew we would have to wait until Tuesday to hear from them. I woke up and called Daddy at work and told him to call the hospital and talk to Jane. He did and he called me back with in a few minutes and when I answered he just said " 4"
My response was 4 what? He said he has 4 cells...I was so happy that your cells had gone down. I was positive that they would have gone up. So we had to go into hospital today for another test to see if in a week they have increased...So we wait. Jane said to call on Monday and she will get us the results.
Ryan, you have been a handful lately. I am not sure if you have turned four and are more aware and more verbal then before. You are giving Daddy and I a run for our money. You are not listening very well and bed time has become even harder than before.
I am thinking it is a stage. Your sister is in her big girl bed and is doing great. Actually she stays in her bed and you don't. Who would have figured that to be the case.
You and Ally are starting to play very well together and you love her so very much. The first thing she does in the morning now that she is mobile, is runs into your room, gets in your bed with you under the covers and screams RY RY. You are always watching out for her and making sure she does not get into trouble.
You are a really good big brother and I am sure Kayla thinks that you are a really good little brother to.
Hang in there Ryan we are hoping for some more good news next week.
Love ya
Mommy.
At the hospital last Wednesday your cells had increased from 5 to 8. I think we were all under the impression we would be heading for a second DLI on May 27th. Mommy was worried that the cells being 8 were based on a test that was done on May 4th and we were now coming up to May 15th so I called the hospital looking for the results that were done on the 13th of May.
When I called they said that they had not received them back, but not to worry. It was the long weekend so I knew we would have to wait until Tuesday to hear from them. I woke up and called Daddy at work and told him to call the hospital and talk to Jane. He did and he called me back with in a few minutes and when I answered he just said " 4"
My response was 4 what? He said he has 4 cells...I was so happy that your cells had gone down. I was positive that they would have gone up. So we had to go into hospital today for another test to see if in a week they have increased...So we wait. Jane said to call on Monday and she will get us the results.
Ryan, you have been a handful lately. I am not sure if you have turned four and are more aware and more verbal then before. You are giving Daddy and I a run for our money. You are not listening very well and bed time has become even harder than before.
I am thinking it is a stage. Your sister is in her big girl bed and is doing great. Actually she stays in her bed and you don't. Who would have figured that to be the case.
You and Ally are starting to play very well together and you love her so very much. The first thing she does in the morning now that she is mobile, is runs into your room, gets in your bed with you under the covers and screams RY RY. You are always watching out for her and making sure she does not get into trouble.
You are a really good big brother and I am sure Kayla thinks that you are a really good little brother to.
Hang in there Ryan we are hoping for some more good news next week.
Love ya
Mommy.
Saturday, May 16, 2009
May 16th - Day +100
Congratulations Ryan,
We were told on Jan 9th that once you were in transplant the first 100 days were critical.
Congratulation you have gotten past the first 100 days....HOORAY!!!!!!!!!
It has been a little harder than we thought after finding out that you did not take your sisters full bone marrow. We came out with 197 Ally VS 3 Ryan. It has been like a little roller coaster, your cells have been going up and down for the last 2 months.
We have had to turn to the DLI - using Ally white cells and infusing them into you.
Ryan we used one DLI just after Easter and your cells seemed to come down. We managed to get them down to 5.
Unfortunately, we were told on Wednesday that just passed that your cells have started to increase again. Not the news we were hoping for, your cells now stand at 8 cell . So they have done another fish test and we are awaiting the news.
I called yesterday to see if they had heard anything and the response was not yet, but not to worry. Easier said than done. My fear is that if we were at 8 cells on the 4th what is it now, we are 12 days past that point. I am hoping they went down, but have prepared myself after talking with Dr. Gassas on Wednesday that it is most likely we will have to use the 2nd out of 3rd DLI.
(Ally White cells)
This is scheduled for May 27th unless the cells have gone down ( we would not use) or have really increased than I think they will schedule you in sooner.
Dr. Gassas did say that you could live with some of your own cells for the rest of your life with out relapse, but the chance of relapse is much greater with your cells.
Mommy feels like she is on a roller coaster that never stops, we just go up and down and round and round. I am fearful of losing you one day and grateful that you are doing so well.
Ryan I wish we could see our future, as this was not the plan. But our plan has now taking a bit of a turn and we will see it through and continue our plan in life when we are done with this journey. Ryan sometimes life throws us these loops and we just have to find a way to cope and carry on.
Alot of people have told us that we are strong and they don't know how we do it. We are not sure how we do it either, we just know we have to for you. Daddy and I find ourselves, watching your every move, watching you breath when you sleep, watching you play with your sisters and loving them so much. We just take it all in. I find myself crying myself to sleep almost every night, taking little breaks in the day while you nap and crying a bit more, so you dont see me. So are we strong, maybe, but I think that you give us that strength, along with Kayla and Ally. There are days when we do not feel that we can do this anymore, we are tired, drained and exhausted, but our love for you, Kayla and Ally is so much stronger than all of this put together.
We are a family and we will get through this for you.......
Love always
Mommy.
We were told on Jan 9th that once you were in transplant the first 100 days were critical.
Congratulation you have gotten past the first 100 days....HOORAY!!!!!!!!!
It has been a little harder than we thought after finding out that you did not take your sisters full bone marrow. We came out with 197 Ally VS 3 Ryan. It has been like a little roller coaster, your cells have been going up and down for the last 2 months.
We have had to turn to the DLI - using Ally white cells and infusing them into you.
Ryan we used one DLI just after Easter and your cells seemed to come down. We managed to get them down to 5.
Unfortunately, we were told on Wednesday that just passed that your cells have started to increase again. Not the news we were hoping for, your cells now stand at 8 cell . So they have done another fish test and we are awaiting the news.
I called yesterday to see if they had heard anything and the response was not yet, but not to worry. Easier said than done. My fear is that if we were at 8 cells on the 4th what is it now, we are 12 days past that point. I am hoping they went down, but have prepared myself after talking with Dr. Gassas on Wednesday that it is most likely we will have to use the 2nd out of 3rd DLI.
(Ally White cells)
This is scheduled for May 27th unless the cells have gone down ( we would not use) or have really increased than I think they will schedule you in sooner.
Dr. Gassas did say that you could live with some of your own cells for the rest of your life with out relapse, but the chance of relapse is much greater with your cells.
Mommy feels like she is on a roller coaster that never stops, we just go up and down and round and round. I am fearful of losing you one day and grateful that you are doing so well.
Ryan I wish we could see our future, as this was not the plan. But our plan has now taking a bit of a turn and we will see it through and continue our plan in life when we are done with this journey. Ryan sometimes life throws us these loops and we just have to find a way to cope and carry on.
Alot of people have told us that we are strong and they don't know how we do it. We are not sure how we do it either, we just know we have to for you. Daddy and I find ourselves, watching your every move, watching you breath when you sleep, watching you play with your sisters and loving them so much. We just take it all in. I find myself crying myself to sleep almost every night, taking little breaks in the day while you nap and crying a bit more, so you dont see me. So are we strong, maybe, but I think that you give us that strength, along with Kayla and Ally. There are days when we do not feel that we can do this anymore, we are tired, drained and exhausted, but our love for you, Kayla and Ally is so much stronger than all of this put together.
We are a family and we will get through this for you.......
Love always
Mommy.
Sunday, May 10, 2009
May 10th- Day + 93 Ryan's 4th Birthday and Mothers Day
Ryan,
We were introduced on May 10th 2005, at 12.26 am. Daddy and I came into your room while you slept, and cuddled up with you and told you how much we love you. Then we just had to wake you up to tell you Happy 4th Birthday!!!! You were so excited, you said I'm four.
You fell back asleep and woke at 6:30 am and ran into our room and said do you know what day it is. It's Mother's Day! Happy Mother's Day Mommy. My heart sank. I was waiting for it is my birthday let's open presents.
Your Uncle Jim, Auntie Brenda, Uncle Philip, Autie Ro Ro, and Nana flew in from Ireland to spend your special day with you. Your Gramma, and Grandad from Montreal came as well.
What a lucky little boy to have so many people make the longs trips that they have made to celebrate with you.
Unfortunately, this year we only had family due to isolation and the risk of germs. Next year it will be different, we will have all your friends and family and make it so big as you will be turning "Five" Wow, five how time flies. I remember it like it was yesterday when you were born.
You have turned out to be one amazing little boy. You are smart, funny, inquisitive, and stubborn. I think you get that from your mommy "Sorry" not the best quality. I guess we could look at it as you will not let you cancer get you down, so if that is you been stubborn, good for you sweetheart...Daddy and I were just saying you have never complained once out, the needles, the masks that you have to wear when we leave the house. You remind us about it all the time, you make sure that no one is sick around you, or you ask for a mask. We could not be prouder of you. You are fighting this disease with courage and strengh.
Uncle Jim and Auntie Brenda brought over a beautiful uniform for you. A replica of Uncle Jim uniform from the Irish police. They had it tailored made to your size and you were thrilled.
They also sent an email to the local Milton police department explaining it was your birthday and what you are going through and they asked if they could make a trip to the house to see you.
So you got to sit in a police car, press all the buttons to make the loud sirens and police noises. You thought it was so much fun...When you had, had enough you said the police man, thank you for coming, but I am going inside now because I am getting cold. To any of your readers of the blog, I can not post a picture, but the pictures are on face book. I must say, and I am biased but Ryan you make one cute police man even if you are holding a stuffed penguin..
We had a cake, you requested Spider-Man, so mommy, Auntie Brenda and Autie Ro Ro, worked hard to get it done. You thought it was great. I think we were all glad it was done and worked out.
You were so tired you were asleep on the couch by 5:30, I woke you about an hour later and you were so grumpy. I should have known better, but I did not want you awake all night.
Daddy and I are so grateful to daddy's family for coming over from Ireland and making a holiday out of your Birthday. Ryan we are so fortunate to have great family on both sides. They have all turned there lives upside down for us during this crazy and difficult time.
Happy Birthday Ryan! We all love you so very much.
We were introduced on May 10th 2005, at 12.26 am. Daddy and I came into your room while you slept, and cuddled up with you and told you how much we love you. Then we just had to wake you up to tell you Happy 4th Birthday!!!! You were so excited, you said I'm four.
You fell back asleep and woke at 6:30 am and ran into our room and said do you know what day it is. It's Mother's Day! Happy Mother's Day Mommy. My heart sank. I was waiting for it is my birthday let's open presents.
Your Uncle Jim, Auntie Brenda, Uncle Philip, Autie Ro Ro, and Nana flew in from Ireland to spend your special day with you. Your Gramma, and Grandad from Montreal came as well.
What a lucky little boy to have so many people make the longs trips that they have made to celebrate with you.
Unfortunately, this year we only had family due to isolation and the risk of germs. Next year it will be different, we will have all your friends and family and make it so big as you will be turning "Five" Wow, five how time flies. I remember it like it was yesterday when you were born.
You have turned out to be one amazing little boy. You are smart, funny, inquisitive, and stubborn. I think you get that from your mommy "Sorry" not the best quality. I guess we could look at it as you will not let you cancer get you down, so if that is you been stubborn, good for you sweetheart...Daddy and I were just saying you have never complained once out, the needles, the masks that you have to wear when we leave the house. You remind us about it all the time, you make sure that no one is sick around you, or you ask for a mask. We could not be prouder of you. You are fighting this disease with courage and strengh.
Uncle Jim and Auntie Brenda brought over a beautiful uniform for you. A replica of Uncle Jim uniform from the Irish police. They had it tailored made to your size and you were thrilled.
They also sent an email to the local Milton police department explaining it was your birthday and what you are going through and they asked if they could make a trip to the house to see you.
So you got to sit in a police car, press all the buttons to make the loud sirens and police noises. You thought it was so much fun...When you had, had enough you said the police man, thank you for coming, but I am going inside now because I am getting cold. To any of your readers of the blog, I can not post a picture, but the pictures are on face book. I must say, and I am biased but Ryan you make one cute police man even if you are holding a stuffed penguin..
We had a cake, you requested Spider-Man, so mommy, Auntie Brenda and Autie Ro Ro, worked hard to get it done. You thought it was great. I think we were all glad it was done and worked out.
You were so tired you were asleep on the couch by 5:30, I woke you about an hour later and you were so grumpy. I should have known better, but I did not want you awake all night.
Daddy and I are so grateful to daddy's family for coming over from Ireland and making a holiday out of your Birthday. Ryan we are so fortunate to have great family on both sides. They have all turned there lives upside down for us during this crazy and difficult time.
Happy Birthday Ryan! We all love you so very much.
Monday, May 4, 2009
May 4th -Day + 87
Ryan,
You have confirmed it. You are a little monkey.
Friday morning you had an accident in your bed. Mommy had to clean you up and I cleaned your lines right before I put you in the tub. You cried your eyes out because of your accident and asked for the syringes that I used to do your lines. So I gave in and you played in the tub as you always do.
Only problem this time , is you decided to pretend you could do your lines yourself and inserted bath water into you blood stream. Mommy thought that if she just pulled back and took out the water and cleaned your lines again all would be fine. I was wrong, very wrong.
I told your nurse about it at 4pm , and she looked at me and said call the hospital. When I asked her why she said there are alot of bacterias in water, some that are very serious, especially if they hit your blood stream. So we called the hospital and they said if you spiked a fever to bring you in.
All seemed to be fine, until mommy went out for an hour. I got a call from you daddy saying that you had spiked a fever. I came straight home and took you to the hospital. I called on the way to let them know.
They were all amazed that you would even know how to do this. I guess I can take credit for that. I have a very intelligent little boy. You are smarter than you know.
The Dr. asked you to tell him what happened and you described it perfectly. You also mentioned that if your mommy could do it than so could you. I don't think so. You were made to promise that you would never do it again....
Your fever broke after 4 hours and you were on antibiotics for 3 days. We were released this morning and your Dr. was happy with your progress.
Dr. Gassas says you look great and that your blood counts are good. He also mentioned this morning that since the DLI you know only have 5 of your own cells. Yeah. Great news.
He said that Ally cells have destroyed 10 of your and she only has to destroy 5 more for us to have a perfect 200/200 (Ally cells only) if we can achieve this than your army will have surrendered to your sister.
We did another blood test today as the last one was 2 weeks ago, so this will tell us if she has conquered your troops of if we have some more work to do.
I hope and pray we have done it and we can deem you in remission. This is my wish for you.
If anyone were to see you now, they would all be amazed at the difference in you from January to now. You are full of energy, full of life. Maybe this is Ally coming out in you. She gives us a run for our money on a daily basis. If you have any of you sister in you, we are sure to win this battle.
I had a great time with you this weekend Ryan and as always am so proud of you and what you have accomplished.
Love your mom.
You have confirmed it. You are a little monkey.
Friday morning you had an accident in your bed. Mommy had to clean you up and I cleaned your lines right before I put you in the tub. You cried your eyes out because of your accident and asked for the syringes that I used to do your lines. So I gave in and you played in the tub as you always do.
Only problem this time , is you decided to pretend you could do your lines yourself and inserted bath water into you blood stream. Mommy thought that if she just pulled back and took out the water and cleaned your lines again all would be fine. I was wrong, very wrong.
I told your nurse about it at 4pm , and she looked at me and said call the hospital. When I asked her why she said there are alot of bacterias in water, some that are very serious, especially if they hit your blood stream. So we called the hospital and they said if you spiked a fever to bring you in.
All seemed to be fine, until mommy went out for an hour. I got a call from you daddy saying that you had spiked a fever. I came straight home and took you to the hospital. I called on the way to let them know.
They were all amazed that you would even know how to do this. I guess I can take credit for that. I have a very intelligent little boy. You are smarter than you know.
The Dr. asked you to tell him what happened and you described it perfectly. You also mentioned that if your mommy could do it than so could you. I don't think so. You were made to promise that you would never do it again....
Your fever broke after 4 hours and you were on antibiotics for 3 days. We were released this morning and your Dr. was happy with your progress.
Dr. Gassas says you look great and that your blood counts are good. He also mentioned this morning that since the DLI you know only have 5 of your own cells. Yeah. Great news.
He said that Ally cells have destroyed 10 of your and she only has to destroy 5 more for us to have a perfect 200/200 (Ally cells only) if we can achieve this than your army will have surrendered to your sister.
We did another blood test today as the last one was 2 weeks ago, so this will tell us if she has conquered your troops of if we have some more work to do.
I hope and pray we have done it and we can deem you in remission. This is my wish for you.
If anyone were to see you now, they would all be amazed at the difference in you from January to now. You are full of energy, full of life. Maybe this is Ally coming out in you. She gives us a run for our money on a daily basis. If you have any of you sister in you, we are sure to win this battle.
I had a great time with you this weekend Ryan and as always am so proud of you and what you have accomplished.
Love your mom.
Wednesday, April 22, 2009
April 22nd- Day + 75
Ryan,
You said the other day that you talked to God and he told you that he was going to make you better. Well you must be doing something right because your bone marrow is clear. Your JMML is not back from what we can see. You are 21/2 months post transplant and it is not back so far.
Most children with JMML relapse with in a few months, we are almost there and you have not. Ryan keep doing what you are doing! Maybe I should be saying Ally keep doing what you are doing! Then again, I could just say keep on working together as a team. You both can do it, you can win this battle. I have amazingly strong willed children, so if anyone can beat this the two of you can.
Ryan you give me the strength to keep holding on. Every time I look at your face, each time we talk , each time you make me laugh. Each kiss and hug I get, the way you are with your sisters and how much you love them and us. All of this makes me love you more and more each day. You really are an inspiration to us all.
Dr. Gassas basically said, if I have this correct is nothing in your bone marrow ( ie: looks like remission) your blood work also looks fine so that would classify remission. But because you still have 15/200 cells they can not be 100% sure that it is not lingering and looking to resurface again. Your monocytes are with in normal range so another good sign.
We wait now until Friday to see if your cells have decreased since your DLI last week.
We are hoping that this is the case. Dr Gassas at a conference next week in England so we only have to go back on May 6th. This is like a nice little vacation away from the hospital.
I can not wait, the weather will hopefully get nicer and we can go to Niagara for a picnic lunch as a family. We still have to stay relatively close to the hospital to be on the safe side.
Ryan today was a good day, better than many others. We had an idea your JMML was not back but until you hear it from the Dr's you are alway left wondering for sure. We know it can come back at any time but we will run with this for now and hope that your fish test that was done today shows less cells. We should have those results by Friday.
Keep up the great work Ryan and lets Ally's troops conquer.
Mommy.
You said the other day that you talked to God and he told you that he was going to make you better. Well you must be doing something right because your bone marrow is clear. Your JMML is not back from what we can see. You are 21/2 months post transplant and it is not back so far.
Most children with JMML relapse with in a few months, we are almost there and you have not. Ryan keep doing what you are doing! Maybe I should be saying Ally keep doing what you are doing! Then again, I could just say keep on working together as a team. You both can do it, you can win this battle. I have amazingly strong willed children, so if anyone can beat this the two of you can.
Ryan you give me the strength to keep holding on. Every time I look at your face, each time we talk , each time you make me laugh. Each kiss and hug I get, the way you are with your sisters and how much you love them and us. All of this makes me love you more and more each day. You really are an inspiration to us all.
Dr. Gassas basically said, if I have this correct is nothing in your bone marrow ( ie: looks like remission) your blood work also looks fine so that would classify remission. But because you still have 15/200 cells they can not be 100% sure that it is not lingering and looking to resurface again. Your monocytes are with in normal range so another good sign.
We wait now until Friday to see if your cells have decreased since your DLI last week.
We are hoping that this is the case. Dr Gassas at a conference next week in England so we only have to go back on May 6th. This is like a nice little vacation away from the hospital.
I can not wait, the weather will hopefully get nicer and we can go to Niagara for a picnic lunch as a family. We still have to stay relatively close to the hospital to be on the safe side.
Ryan today was a good day, better than many others. We had an idea your JMML was not back but until you hear it from the Dr's you are alway left wondering for sure. We know it can come back at any time but we will run with this for now and hope that your fish test that was done today shows less cells. We should have those results by Friday.
Keep up the great work Ryan and lets Ally's troops conquer.
Mommy.
Monday, April 20, 2009
April 20th - Day+ 73
Ryan,
Look how far you have come. We are at day + 73 post transplant and you are doing great considering all you have been through.
Mommy walked the 5 km MS walk yesterday and found out that she is out of shape. I need walk more often. You gave me a sticker to wear on my hand and you said " Think about me, don't forget" I got home and the sticker was still on my hand and you were thrilled.
You had a great weekend with your sisters. You spent a lot of time at the park and we took a walk on Saturday night. You are sleeping great in your bed and still eating and drinking well.
Mommy had a rough week last week and relaxed yesterday, once the walk was done.
You and I feel asleep for a short time on the couch yesterday, we curled up under a blanket to keep warm and drifted off to sleep. Mommy enjoyed each minute that you were asleep in my arms. I watched you like I did when you were a baby.
Ryan, you have started to want to play with your friends again and are becoming more comfortable in your surroundings since we have been home. I am so pleased to see this.
Mommy, has realized through all of this what friendship really means. One day when you are all grown up you will have many friends, I am certain of this. and you will understand how important they are.
Just remember friends are not always there during just the good times, but they are also there during the difficult and not so good ones. Being there through the good times is easy, it is being there through the bad that is much more difficult. Daddy and I have come to know that we have a great family and we have great friends.
We have had amazing friends from before you were sick who have been beside us every step of the way , and we have met some really amazing friends since you got sick, who have become good friends that have also been right there taking this ride with us.
So again, mommy wants to thank everyone who has been there for our family during this time. We could not have done it with out all of you. Ryan, their support is everything. One day you will look back on all of this and see what this journey was all about. I will be starting your scrap book soon. Your shadow box in done and will be hung in your room today, to remind you of what you have accomplished so far on this journey.
Love you babe,
Mommy
Look how far you have come. We are at day + 73 post transplant and you are doing great considering all you have been through.
Mommy walked the 5 km MS walk yesterday and found out that she is out of shape. I need walk more often. You gave me a sticker to wear on my hand and you said " Think about me, don't forget" I got home and the sticker was still on my hand and you were thrilled.
You had a great weekend with your sisters. You spent a lot of time at the park and we took a walk on Saturday night. You are sleeping great in your bed and still eating and drinking well.
Mommy had a rough week last week and relaxed yesterday, once the walk was done.
You and I feel asleep for a short time on the couch yesterday, we curled up under a blanket to keep warm and drifted off to sleep. Mommy enjoyed each minute that you were asleep in my arms. I watched you like I did when you were a baby.
Ryan, you have started to want to play with your friends again and are becoming more comfortable in your surroundings since we have been home. I am so pleased to see this.
Mommy, has realized through all of this what friendship really means. One day when you are all grown up you will have many friends, I am certain of this. and you will understand how important they are.
Just remember friends are not always there during just the good times, but they are also there during the difficult and not so good ones. Being there through the good times is easy, it is being there through the bad that is much more difficult. Daddy and I have come to know that we have a great family and we have great friends.
We have had amazing friends from before you were sick who have been beside us every step of the way , and we have met some really amazing friends since you got sick, who have become good friends that have also been right there taking this ride with us.
So again, mommy wants to thank everyone who has been there for our family during this time. We could not have done it with out all of you. Ryan, their support is everything. One day you will look back on all of this and see what this journey was all about. I will be starting your scrap book soon. Your shadow box in done and will be hung in your room today, to remind you of what you have accomplished so far on this journey.
Love you babe,
Mommy
Thursday, April 16, 2009
April 16th- Day + 69
Ryan,
WE ARE ALL HOME!
You went in yesterday for your bone marrow aspiration! You were funny, the Dr. said you are going to take a little nap and you said" I don't want to take a nap" and you were in a sleep, just like that. Daddy had to come into the room just to watch..I think he thinks you are funny.
You sister did it the day before and daddy took a video of her when she was on her happy medication.
Dr. Gassas explained it like this:
Ryan you have a little army of soliders that have not given up yet. So we have to increase Ally's troop to try to over power yours. So we sent in 40 million cells yesterday to do just that...
You would think that 40 million would be able to take on 14 ( which is proabably more like 5000) when you do the actual math. So we wait to see what this war will do. Who will win.
Sorry Ryan I have to take Ally's side on this one, as she needs to kick some real butt now.
Please let your 14 soliders surrender to her troops. This is what we all need, this is what I need and this is expecially what you need.
We have another set of troop frozen and ready to come out should we need and another set after that.
Ally was able to produce 3 troops instead of the 2 they were looking for. Go Ally.
Ryan, we are awaiting the results of your bone marrow aspiration, this will give us a guide line to how we move forward. If there are no signs of your JMML being back then we can move slow, like we did yesterday. If it is back, then we will have to send in some more of Ally's troops to destroy yours. I call them the reinforcements. Destroy seems like a harsh word to use, but as your mommy if your cells are destroyed, then you will live a much better life and will continue to do great things. And we can deal with whatever happens after that together.
Ryan if we can get through this we can get through anything!
You wished last night before you went to bed that your line and bandage was gone and you could do what ever you wanted and go where ever you wanted. So now take a rest, let Ally's body do its thing and then guess what you will be as good as new and you can get on it. Go where ever you want, and do whatever you want. And I will be your biggest fan, cheering you along the way.
Love you monkey,
Mommy
WE ARE ALL HOME!
You went in yesterday for your bone marrow aspiration! You were funny, the Dr. said you are going to take a little nap and you said" I don't want to take a nap" and you were in a sleep, just like that. Daddy had to come into the room just to watch..I think he thinks you are funny.
You sister did it the day before and daddy took a video of her when she was on her happy medication.
Dr. Gassas explained it like this:
Ryan you have a little army of soliders that have not given up yet. So we have to increase Ally's troop to try to over power yours. So we sent in 40 million cells yesterday to do just that...
You would think that 40 million would be able to take on 14 ( which is proabably more like 5000) when you do the actual math. So we wait to see what this war will do. Who will win.
Sorry Ryan I have to take Ally's side on this one, as she needs to kick some real butt now.
Please let your 14 soliders surrender to her troops. This is what we all need, this is what I need and this is expecially what you need.
We have another set of troop frozen and ready to come out should we need and another set after that.
Ally was able to produce 3 troops instead of the 2 they were looking for. Go Ally.
Ryan, we are awaiting the results of your bone marrow aspiration, this will give us a guide line to how we move forward. If there are no signs of your JMML being back then we can move slow, like we did yesterday. If it is back, then we will have to send in some more of Ally's troops to destroy yours. I call them the reinforcements. Destroy seems like a harsh word to use, but as your mommy if your cells are destroyed, then you will live a much better life and will continue to do great things. And we can deal with whatever happens after that together.
Ryan if we can get through this we can get through anything!
You wished last night before you went to bed that your line and bandage was gone and you could do what ever you wanted and go where ever you wanted. So now take a rest, let Ally's body do its thing and then guess what you will be as good as new and you can get on it. Go where ever you want, and do whatever you want. And I will be your biggest fan, cheering you along the way.
Love you monkey,
Mommy
Wednesday, April 15, 2009
April 15th- Day+ 68
Ryan,
You would have been so proud of your little sister. When we got to the hospital she had her blood work and IV done. She cried a little but she got through it. We waited until about 3pm and the OR called us down. We were what they call " on call " as it was booked last minute.
When we got down stairs they came and told us that they were running late and if we wanted this done that Ally would have to be sidated and not put under general.
This is when we lost it, Mommy broke down and Daddy was just angry. We were not told this and with our emmotions running high, Daddy laid into the nurse and the Dr. The wanted to give her 3 different drugs, one that causes short term memory loss, and another on top of that.
When it came down to it we allowed them to do it, otherwise they were sending up back up stairs and it would have been cancelled. Mommy asked that she went in with Ally to the OR to make sure that she would be ok. When they gave her the first drug, we could not help but laugh as she was so high and she was laughing so hard..Daddy took a video so he could show Gramma and Grandad. She got through the surgery just fine and was awake when she came out.
The line was in her leg and she was not allowed to sit or walk. Ryan this was the hardest part as she is so much younger than you and does not understand. She had a reaction to all the drugs about an hour post surgery and daddy could hardly hold her down. She became a very angry child and she then fell asleep. It started again about 6:30 and the nurse gave her Ativan to calm her down.
We got up yesterday and went down to the 6th floor where they did the stem stell harvest and then we have to wait to see if they got enough or she had to do it again.
At 5:15 Dr. Gassas came in and told us she had done her job and it was now up to you to except her cells to fight off yours. Dr. Gassas was hoping for 2 sets to do two DLI's and Ally provided enough for 3.
She is home and resting well. We have to monitor heg leg today to make sure there is no bleeding. You were so happy to see her last night. But were quick to ask me to put her to bed. I think you wanted time with me and I was ready for it to. I missed you so much.
We are heading back to the hospital this morning. Dr. Gassas wants to do a Bone Marrow Aspiration on you to see if your JMML is back. He says it sometime hides it self in the bone marrow and not the perifial blood. So that will be done at around 11 and they will knock you out.
Then you will get Ally's cells today arond 2pm.
So we will update the blog when we get home today to as how everything goes.
Love ya Ryan and missed you so much.
Mommy
You would have been so proud of your little sister. When we got to the hospital she had her blood work and IV done. She cried a little but she got through it. We waited until about 3pm and the OR called us down. We were what they call " on call " as it was booked last minute.
When we got down stairs they came and told us that they were running late and if we wanted this done that Ally would have to be sidated and not put under general.
This is when we lost it, Mommy broke down and Daddy was just angry. We were not told this and with our emmotions running high, Daddy laid into the nurse and the Dr. The wanted to give her 3 different drugs, one that causes short term memory loss, and another on top of that.
When it came down to it we allowed them to do it, otherwise they were sending up back up stairs and it would have been cancelled. Mommy asked that she went in with Ally to the OR to make sure that she would be ok. When they gave her the first drug, we could not help but laugh as she was so high and she was laughing so hard..Daddy took a video so he could show Gramma and Grandad. She got through the surgery just fine and was awake when she came out.
The line was in her leg and she was not allowed to sit or walk. Ryan this was the hardest part as she is so much younger than you and does not understand. She had a reaction to all the drugs about an hour post surgery and daddy could hardly hold her down. She became a very angry child and she then fell asleep. It started again about 6:30 and the nurse gave her Ativan to calm her down.
We got up yesterday and went down to the 6th floor where they did the stem stell harvest and then we have to wait to see if they got enough or she had to do it again.
At 5:15 Dr. Gassas came in and told us she had done her job and it was now up to you to except her cells to fight off yours. Dr. Gassas was hoping for 2 sets to do two DLI's and Ally provided enough for 3.
She is home and resting well. We have to monitor heg leg today to make sure there is no bleeding. You were so happy to see her last night. But were quick to ask me to put her to bed. I think you wanted time with me and I was ready for it to. I missed you so much.
We are heading back to the hospital this morning. Dr. Gassas wants to do a Bone Marrow Aspiration on you to see if your JMML is back. He says it sometime hides it self in the bone marrow and not the perifial blood. So that will be done at around 11 and they will knock you out.
Then you will get Ally's cells today arond 2pm.
So we will update the blog when we get home today to as how everything goes.
Love ya Ryan and missed you so much.
Mommy
Sunday, April 12, 2009
April 12th- Day +65 Easter
Ryan,
Happy Easter Sweetheart!
You were so excited this morning to see that the Easter Bunny had come. We had to keep reminding you that some of the eggs he left for Ally. You were very kind and helped her find so eggs and you even put a few back for her.
We are Day + 65 after transplant and other than some of your cells growing back, you are doing very well. You look great, are eating and drinking well. You sleep more than a almost 4 year old should but that is ok. You need it.
Since Ally has had to go to the hospital for the last two night, we have dropped you to your Auntie Nicole for some quality time with Ethan and Aidan. Auntie Nicole to of course. She loves her special time with you when mommy is not around.
Grandad and Gramma were suppose to be here on Friday but Grandad was not feeling well and did not want to take any chances of you or Ally catching anything. They are on there way now, so they can take care of you for a few day while I am at the hospital with Ally.
You are not happy that I will not be here, but I have told you that she needs me and that she is doing this for you. I know you are in good hands and you will have a wonderful time with Gramma and Grandad. Daddy will be with Ally and I at the hospital on Monday and maybe Tuesday, but will be home with you at night to put you to bed and read you a story.
Kayla should be here on Thursday! I am sure we will be home by Thursday night at the latest.
Your Nana, Uncle Jim, Auntie Brenda, Auntie Ro Ro and uncle Phillip have confirmed that they will be here for your birthday and we are going tp have a big snake party at your request. Yuck.
You saw Ally's arm last night and said " mommy that looks really" then you paused and said 'BAD" and you asked where the tube in her leg was.
Ally is doing great, but we have not got to the hard part yet. Mommy is not looking forward to tomorrow. Ryan it is hard enough having to watch you battle this and now to add Ally to the mix of having to have these procedures done. I just keep telling myself it will all work out in the end.
You watch the two of you will do this together. I count on it.
You have both been through so much that no child should have to go through and if I could do it for you both I would.
I love you both so much.
Mommy.
Happy Easter Sweetheart!
You were so excited this morning to see that the Easter Bunny had come. We had to keep reminding you that some of the eggs he left for Ally. You were very kind and helped her find so eggs and you even put a few back for her.
We are Day + 65 after transplant and other than some of your cells growing back, you are doing very well. You look great, are eating and drinking well. You sleep more than a almost 4 year old should but that is ok. You need it.
Since Ally has had to go to the hospital for the last two night, we have dropped you to your Auntie Nicole for some quality time with Ethan and Aidan. Auntie Nicole to of course. She loves her special time with you when mommy is not around.
Grandad and Gramma were suppose to be here on Friday but Grandad was not feeling well and did not want to take any chances of you or Ally catching anything. They are on there way now, so they can take care of you for a few day while I am at the hospital with Ally.
You are not happy that I will not be here, but I have told you that she needs me and that she is doing this for you. I know you are in good hands and you will have a wonderful time with Gramma and Grandad. Daddy will be with Ally and I at the hospital on Monday and maybe Tuesday, but will be home with you at night to put you to bed and read you a story.
Kayla should be here on Thursday! I am sure we will be home by Thursday night at the latest.
Your Nana, Uncle Jim, Auntie Brenda, Auntie Ro Ro and uncle Phillip have confirmed that they will be here for your birthday and we are going tp have a big snake party at your request. Yuck.
You saw Ally's arm last night and said " mommy that looks really" then you paused and said 'BAD" and you asked where the tube in her leg was.
Ally is doing great, but we have not got to the hard part yet. Mommy is not looking forward to tomorrow. Ryan it is hard enough having to watch you battle this and now to add Ally to the mix of having to have these procedures done. I just keep telling myself it will all work out in the end.
You watch the two of you will do this together. I count on it.
You have both been through so much that no child should have to go through and if I could do it for you both I would.
I love you both so much.
Mommy.
Thursday, April 9, 2009
April 9th- Day + 62 Bad News Yet Again
Ryan,
What is happening? Mommy is so sad! Today at 3:30 you and I were talking about the day you were born and then the phone rang. Guess who ? Dr. Gassas!
He called to say that your cells have increased to 14! Wow they doubled in a week. Not the news we wanted to hear.
Plans for Easter have since changed. Ally will be going into hospital tomorrow for her first shot of GCSF to increase her white cells. Second shot will be Saturday night and third shot Sunday.
Monday morning she goes in for the insertion of the tube that will harvest her white cells. She will be put under and the remainder of Monday will be a rest day.
Tuesday they will harvest her cells and another harvest on Wednesday. She should be home by Thursday at the latest.
Gramma and Grandad are coming back tomorrow due to the news. They will help Auntie Nicole take care of you while we are taking care of Ally for the next few days.
Mommy has asked Dr. Gassas if this will hurt Ally in any way. He said that she has to have an easy going weekend. No rough play as her spleen will be full of blood due to the inceased cells.
I have asked what happens after DLI, he said that he wants to get enough for 2 DLI's to take place. So one will be done ASAP and then if it does not work again in about 4 weeks. He says this is an oppertunity to reverse what is happening. He also said there are no guarantees.
Mommy has read up on this procedure and I am not sure what to think as most studies show it does not keep a patient in remission. If that is the case I am hoping that it will buy us enough time to get you to another transplant.
I also asked abuot should DLI not work! His response was lets get to that bridge when we have to. Then a bit of a pause and then he said if it works out timming wise, we may be able to do another transplant.
Mommy is devistated! All we want is for you to get through this and be OK.
I will put my positive spin on this one and say these are bumps in the road and the end result will be great. We still have not got the 3rd piece of good news. So we wait.
You have been asking alot about God lately! You questions was what is God's job? So we have told you that he is the man that takes care of us all. You have asked if we are going to Die? We have told you that we will all die when we are very old. You seem to be ok with these answers.
You were also watching Backyardigins this morning and you said " Mommy Tasha is quitting "
You said mommy we never quit. We never give up and we alway fight. You got it baby.
Mommy is having a hard time with this one. How do I keep it together for you! How do I not let you see what my fears are everyday! I know you see it when I cry. You still wipe my tears and I still tell you they are tears because I love you so much.
Love you baby.
Mommy.
What is happening? Mommy is so sad! Today at 3:30 you and I were talking about the day you were born and then the phone rang. Guess who ? Dr. Gassas!
He called to say that your cells have increased to 14! Wow they doubled in a week. Not the news we wanted to hear.
Plans for Easter have since changed. Ally will be going into hospital tomorrow for her first shot of GCSF to increase her white cells. Second shot will be Saturday night and third shot Sunday.
Monday morning she goes in for the insertion of the tube that will harvest her white cells. She will be put under and the remainder of Monday will be a rest day.
Tuesday they will harvest her cells and another harvest on Wednesday. She should be home by Thursday at the latest.
Gramma and Grandad are coming back tomorrow due to the news. They will help Auntie Nicole take care of you while we are taking care of Ally for the next few days.
Mommy has asked Dr. Gassas if this will hurt Ally in any way. He said that she has to have an easy going weekend. No rough play as her spleen will be full of blood due to the inceased cells.
I have asked what happens after DLI, he said that he wants to get enough for 2 DLI's to take place. So one will be done ASAP and then if it does not work again in about 4 weeks. He says this is an oppertunity to reverse what is happening. He also said there are no guarantees.
Mommy has read up on this procedure and I am not sure what to think as most studies show it does not keep a patient in remission. If that is the case I am hoping that it will buy us enough time to get you to another transplant.
I also asked abuot should DLI not work! His response was lets get to that bridge when we have to. Then a bit of a pause and then he said if it works out timming wise, we may be able to do another transplant.
Mommy is devistated! All we want is for you to get through this and be OK.
I will put my positive spin on this one and say these are bumps in the road and the end result will be great. We still have not got the 3rd piece of good news. So we wait.
You have been asking alot about God lately! You questions was what is God's job? So we have told you that he is the man that takes care of us all. You have asked if we are going to Die? We have told you that we will all die when we are very old. You seem to be ok with these answers.
You were also watching Backyardigins this morning and you said " Mommy Tasha is quitting "
You said mommy we never quit. We never give up and we alway fight. You got it baby.
Mommy is having a hard time with this one. How do I keep it together for you! How do I not let you see what my fears are everyday! I know you see it when I cry. You still wipe my tears and I still tell you they are tears because I love you so much.
Love you baby.
Mommy.
Wednesday, April 8, 2009
April 8th - Day + 61 Longer Road than we thought
Ryan,
It is wednesday and we set off for the hospital early. You were in great spirits.
We saw your friend Kathryn and her brother Jeff.
We started off by seeing Dr. Gassas and you invited him to your birthday. He was very honored.
But he will have to pass as he need to ensure that he is at the hospital to take care of all the other boy and girls.
But good news your Nana, Auntie Brenda, Uncle Jim, Auntie Ro Ro and Uncle Phillip will be coming over from Ireland to see you in May for you Birthday. You may even get a visit from your Uncle Aidan and Auntie Ann.
Dr. Gassas examed you today and he still can not feel your spleen so that is great news.
He has removed your overnight hydration another good thing as we are eating and drinking well.
Your routine blood work has come back and looks pretty good. The only down side is that your monocytes ( marker for your disease ) has increased a bit. This is not something we want. It has come out of the normal range from last week and we will monitor. We await the FISH test again.
Ryan, it really seems like this is a week by week process and it is alot of adjusting to see what happens next. It is not at all straight forward. Dr. Gassas, I think should have the results by the end of the week and will let us know.
If your cells increase, they will make the decission to do the DLI on Ally, if they remain the same or less then we will wait some more. Your white counts, platelets and red counts are all stable..
Mommy is trying to hold it all together, but with great difficulty. I actually just made two cups of tea, and I am the only one here. Cleary not thinking.
Keep fighting my sweet boy. You are doing great..
We are all beside you every step of the way .
Love Mommy.
It is wednesday and we set off for the hospital early. You were in great spirits.
We saw your friend Kathryn and her brother Jeff.
We started off by seeing Dr. Gassas and you invited him to your birthday. He was very honored.
But he will have to pass as he need to ensure that he is at the hospital to take care of all the other boy and girls.
But good news your Nana, Auntie Brenda, Uncle Jim, Auntie Ro Ro and Uncle Phillip will be coming over from Ireland to see you in May for you Birthday. You may even get a visit from your Uncle Aidan and Auntie Ann.
Dr. Gassas examed you today and he still can not feel your spleen so that is great news.
He has removed your overnight hydration another good thing as we are eating and drinking well.
Your routine blood work has come back and looks pretty good. The only down side is that your monocytes ( marker for your disease ) has increased a bit. This is not something we want. It has come out of the normal range from last week and we will monitor. We await the FISH test again.
Ryan, it really seems like this is a week by week process and it is alot of adjusting to see what happens next. It is not at all straight forward. Dr. Gassas, I think should have the results by the end of the week and will let us know.
If your cells increase, they will make the decission to do the DLI on Ally, if they remain the same or less then we will wait some more. Your white counts, platelets and red counts are all stable..
Mommy is trying to hold it all together, but with great difficulty. I actually just made two cups of tea, and I am the only one here. Cleary not thinking.
Keep fighting my sweet boy. You are doing great..
We are all beside you every step of the way .
Love Mommy.
Sunday, April 5, 2009
April 5th Day + 57 Shears of Hope Cut-A-Thon
Ryan,
Today mommy and Ally were invited to join Cindy, Shannon, Jody and the staff of Village Hair Studio in there efforts in raising money for Sick Kids Hospital. We set off early and Ally got her hair cut by Jody and put in her donation in the box for sick kids. Your sister Kayla was also there to support you, she gave her donation as well, but did not get her hair cut as she has dance competitions coming up soon and it needs to be long enough to tie up.
Ryan you should have seen it, the staff were dressed in your favorite color, yellow. You are so right, it is a bright and happy color. There were yellow flowers, and your pictures were also up.
Mommy really can not thank Village Hair Studio enough for doing this in your honor. I am sure that they are going to have a very successful day. It is amazing how many kind and generous people there are out there willing to help.
Ryan, once you are able, I will take you there so you can meet all the wonderful people at the salon and we will have Jody cut your hair. It is such a wonderful place, great atmosphere, friendly and personable staff and always with out a dought a great cut, color and style.
Mommy thanks them from the bottom of her heart for what they have done.
Heather, Kathryn's mom was also there with one of her friends. She is truly an amazing person and mommy has become very fond of her. She understands what we are going through as a family as their family is going through the same thing. Mommy thanks her so much for coming.
Your Auntie Nicole, Ethan and Aidan came aswell, Ethan said he was shaving his head again, so you were not along in this. He really misses you and wants you to get well, as do we all.
Auntie Tina and Stevie, Deannie, Cindy and Kayla, Tanya and Lia, Carol Ann and Mike, Crystal, James, Savannah, and James Jr. were also there . I am sure if we had stayed longer we would have seen more people but Ally really needed to get home for her nap.
Mommy wants to extend her thanks to everybody who went to the salon today to support Village Hair Studio's event.
Thanks to all
Mommy loves you Ryan and you are loved by so many wonderful people
Mommy
Today mommy and Ally were invited to join Cindy, Shannon, Jody and the staff of Village Hair Studio in there efforts in raising money for Sick Kids Hospital. We set off early and Ally got her hair cut by Jody and put in her donation in the box for sick kids. Your sister Kayla was also there to support you, she gave her donation as well, but did not get her hair cut as she has dance competitions coming up soon and it needs to be long enough to tie up.
Ryan you should have seen it, the staff were dressed in your favorite color, yellow. You are so right, it is a bright and happy color. There were yellow flowers, and your pictures were also up.
Mommy really can not thank Village Hair Studio enough for doing this in your honor. I am sure that they are going to have a very successful day. It is amazing how many kind and generous people there are out there willing to help.
Ryan, once you are able, I will take you there so you can meet all the wonderful people at the salon and we will have Jody cut your hair. It is such a wonderful place, great atmosphere, friendly and personable staff and always with out a dought a great cut, color and style.
Mommy thanks them from the bottom of her heart for what they have done.
Heather, Kathryn's mom was also there with one of her friends. She is truly an amazing person and mommy has become very fond of her. She understands what we are going through as a family as their family is going through the same thing. Mommy thanks her so much for coming.
Your Auntie Nicole, Ethan and Aidan came aswell, Ethan said he was shaving his head again, so you were not along in this. He really misses you and wants you to get well, as do we all.
Auntie Tina and Stevie, Deannie, Cindy and Kayla, Tanya and Lia, Carol Ann and Mike, Crystal, James, Savannah, and James Jr. were also there . I am sure if we had stayed longer we would have seen more people but Ally really needed to get home for her nap.
Mommy wants to extend her thanks to everybody who went to the salon today to support Village Hair Studio's event.
Thanks to all
Mommy loves you Ryan and you are loved by so many wonderful people
Mommy
Friday, April 3, 2009
April 3rd - Day + 55 Some more news
Hi Ryan,
I found the spell check on blogger....yeah, now there should be no more mistakes.
You are doing well with in yourself. Hot Chocolate is your new favorite drink, you can not get enough and you are eating honey raisin toast like it has gone out of style.
Mommy is sleeping better with a few interruptions during the night.
Kayla had to get a vaccination (MMR) so she can not see you for about tow weeks. The reason she can not see you is because the shot she was given was is a live virus.
With you having a suppressed immune system, Kayla's Dr. and her mommy did not think it was wise.
Kayla will see us in two weeks. Mommy called the hospital to see if Mommy and Daddy can still see Kayla and they said " YES" not to worry. Daddy will be taking her to dinner and a movie next week.
Kim from the hospital called today, I thought she was returning my call, but she had not even got my message.
I got a little worried, as to why the hospital would be calling us today since we are only scheduled to go back next week.
Kim said that they put a rush on your Fish test to see what Ally cells were doing.
The bad news, we still see your cells.( are goal is to eliminate all of them)
The good news is there are now (194) Ally and (6) of Ryan, not much of a difference. But still one less.
Ryan, I choose to look at this as your cells did not increase with in the week. I take this as good news. We will now have to wait until Wednesday to see what your monocytes are doing?
Ryan, this is the hardest thing life has ever dealt me and I am sure I speak for your father as well when I say this. So we will remain hope full and see what next week holds. I find it so unfair that you have had to face such a serious disease at such a young age. You have been through in your short life, more than I have ever been through. You inspire me as you are doing this with such strength and courage.
I will continue to pray for you. Daddy and I are so fortunate to have you as our son.
Hugs and kisses to you Ryan...
Love your mom
I found the spell check on blogger....yeah, now there should be no more mistakes.
You are doing well with in yourself. Hot Chocolate is your new favorite drink, you can not get enough and you are eating honey raisin toast like it has gone out of style.
Mommy is sleeping better with a few interruptions during the night.
Kayla had to get a vaccination (MMR) so she can not see you for about tow weeks. The reason she can not see you is because the shot she was given was is a live virus.
With you having a suppressed immune system, Kayla's Dr. and her mommy did not think it was wise.
Kayla will see us in two weeks. Mommy called the hospital to see if Mommy and Daddy can still see Kayla and they said " YES" not to worry. Daddy will be taking her to dinner and a movie next week.
Kim from the hospital called today, I thought she was returning my call, but she had not even got my message.
I got a little worried, as to why the hospital would be calling us today since we are only scheduled to go back next week.
Kim said that they put a rush on your Fish test to see what Ally cells were doing.
The bad news, we still see your cells.( are goal is to eliminate all of them)
The good news is there are now (194) Ally and (6) of Ryan, not much of a difference. But still one less.
Ryan, I choose to look at this as your cells did not increase with in the week. I take this as good news. We will now have to wait until Wednesday to see what your monocytes are doing?
Ryan, I was not sure what to expect once we were out of transplant. I had hoped and prayed you would be in remission and we would just have to monitor. Unfortunately, that is not the case and we are playing the waiting game, with unknown result every week. I think this will be a longer road than we all had hoped.
Ryan, this is the hardest thing life has ever dealt me and I am sure I speak for your father as well when I say this. So we will remain hope full and see what next week holds. I find it so unfair that you have had to face such a serious disease at such a young age. You have been through in your short life, more than I have ever been through. You inspire me as you are doing this with such strength and courage.
I will continue to pray for you. Daddy and I are so fortunate to have you as our son.
Hugs and kisses to you Ryan...
Love your mom
Wednesday, April 1, 2009
April 1st -Day + 53 Good New and Bad News
Ryan,
We set off for the hospital today, it was dull outside and a quiet ride in.
Not knowing what to expect, it was a quiet drive in to town.
Gramma and Grandad came with us so they could hear what Dr. Gassas had to say and
be a third party. Sometimes what one person hears is not the same as another.
In the last few days you have done a 180 on us and have started to drink quite a bit. We were somewhat worried about this as you were doing this when you first got sick. You have started eating a bit better as well.
When we got to the hospital all your friends were there. I got a big hug from your friend Kathryn and you played with her until the Dr. saw us.
Daddy, right away asked if the fish test (you vs Ally) was back. They said yes, but we will talk about that later. Daddy was quick to state that when they say that, it is not good news.
So she told us that your cells have grown. Ally has 193 cells and you have 7. This is the bad news.
I think from now on, I will have you daddy wait for these results as this test is not the only factor with your disease. There are many variables. If daddy had waited we would not have sat for another hour thinking the worst.
What came next was your results from today. Your monocytes have dropped to 0.71 from 1.59.
This is the cells we really need to watch now. This type of cells is a marker in your disease.
The higher it is the worse off we are. So this is excellent news. Your white cells also came down to 7.1 from 11.1 another good thing.
Dr. Gassass says that next weeks results are key, as today we took another fish test and you have been off of the Cyclosporine for one full week. He is hoping that we are seeing a bit of Graft VS. Luekemia. ( Ally's cells attacking the remainder of your cells.) He says that as you have been off of it for a week now, we hopefully will see Ally's cells rise and yours start to fall.
He has told us that it is a very complicated disease and we need to control it early on, and that is why we have adjusted the medications already.
Grandad asked the question, what about a second transplant and Dr. Gassas replied do you really want to know the answer.. Grandad said yes....Dr. Gassas said time line on this is six months....Grandad replied with "WHY".
Dr. Gassas said that is a good question! Because of Ryans organs. His body needs to recover from the effects of the chemo and if we were to do it now, the chance of you surviving a second transplant would not be good. But should you remain in good health for another 4 months it is an option.
So should your cells grow again next week, they will most likely schedule Ally for the DLI and harvest her white cells. If not we continue to monitor you.
We asked if you were in remission and he said by looking at your blood cells "YES" but looking at the your cells vs Ally's " NO" We can not be 100% sure that there is no cancer as you are still growing your own cells. But the markers that we see are not showing any signs of it being back.
Ryan, mommy is choosing to run with this good news and hope that Ally's cells are fighting your luekemia. So far today has not been that bad. It definately could have been worse.
We all love you!
Mommy
We set off for the hospital today, it was dull outside and a quiet ride in.
Not knowing what to expect, it was a quiet drive in to town.
Gramma and Grandad came with us so they could hear what Dr. Gassas had to say and
be a third party. Sometimes what one person hears is not the same as another.
In the last few days you have done a 180 on us and have started to drink quite a bit. We were somewhat worried about this as you were doing this when you first got sick. You have started eating a bit better as well.
When we got to the hospital all your friends were there. I got a big hug from your friend Kathryn and you played with her until the Dr. saw us.
Daddy, right away asked if the fish test (you vs Ally) was back. They said yes, but we will talk about that later. Daddy was quick to state that when they say that, it is not good news.
So she told us that your cells have grown. Ally has 193 cells and you have 7. This is the bad news.
I think from now on, I will have you daddy wait for these results as this test is not the only factor with your disease. There are many variables. If daddy had waited we would not have sat for another hour thinking the worst.
What came next was your results from today. Your monocytes have dropped to 0.71 from 1.59.
This is the cells we really need to watch now. This type of cells is a marker in your disease.
The higher it is the worse off we are. So this is excellent news. Your white cells also came down to 7.1 from 11.1 another good thing.
Dr. Gassass says that next weeks results are key, as today we took another fish test and you have been off of the Cyclosporine for one full week. He is hoping that we are seeing a bit of Graft VS. Luekemia. ( Ally's cells attacking the remainder of your cells.) He says that as you have been off of it for a week now, we hopefully will see Ally's cells rise and yours start to fall.
He has told us that it is a very complicated disease and we need to control it early on, and that is why we have adjusted the medications already.
Grandad asked the question, what about a second transplant and Dr. Gassas replied do you really want to know the answer.. Grandad said yes....Dr. Gassas said time line on this is six months....Grandad replied with "WHY".
Dr. Gassas said that is a good question! Because of Ryans organs. His body needs to recover from the effects of the chemo and if we were to do it now, the chance of you surviving a second transplant would not be good. But should you remain in good health for another 4 months it is an option.
So should your cells grow again next week, they will most likely schedule Ally for the DLI and harvest her white cells. If not we continue to monitor you.
We asked if you were in remission and he said by looking at your blood cells "YES" but looking at the your cells vs Ally's " NO" We can not be 100% sure that there is no cancer as you are still growing your own cells. But the markers that we see are not showing any signs of it being back.
Ryan, mommy is choosing to run with this good news and hope that Ally's cells are fighting your luekemia. So far today has not been that bad. It definately could have been worse.
We all love you!
Mommy
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.
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
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
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
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
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
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
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.
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
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
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
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.
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,
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.
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
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
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
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.
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.
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