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.
Wednesday, April 22, 2009
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.
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