Friday, May 29th, 2009
Hi Everyone,
Just a little update to let you that Jacob is doing better. He keeps on fighting as he bravely always does. I don't have much energy to write tonight but i can`t go without thanking all of you for your messages and support. Its what keeps us going. As soon as Jacob is well enough i will read him ALL his messages. For all of you who left messages for Jason and I...THANK YOU! We don't feel so alone because of them.
i am tired. i feel like just closing my eyes and just crash. Jacob is doing well and in good spirits but to even think that we will do this to him all over again is confusing and heartbreaking to me. We have decided to go for the next cycle. We really don't have a back up if this doesn't work and I understand now what Jason was trying to tell me. I don't want us to regret our decision. I don't want us to hate each other because we didn't listen to each other. So i get it now. I know we must go on. At least the second cycle. Jason and I are pretty much in agreement that the third one is out but one day at a time. I just want to take my baby home. that's all i want in the entire world is just to take my boys home. I am tired of living in a hospital. i am tired of not being in the same room with my husband alone. I am tired of hospital smell. Every floor, every ward, every room has a smell and even when i'm not here i can smell it on my clothes, I smell it on Jacob, even after we give him a shower, i am tired of seeing how frail Jacob looks, he looks like an old man and i hate it. I hate it all and I just want to go home. i am so tired.
I just want a normal life with my family but i don't think that will ever be. Even when jacob gets better and comes home, his health will be forever on our minds.
Saying thank you to all now seems so understated but its the only words i have. We are still overwhelmed and feel so blessed that so many care about Jacob and care enough to check this page to see how he is doing. I just don't know what to say anymore except thank you.
Liam is doing great. He is still just what we need him to be. He is the glue that is keeping this family together and sane at this time.
Friday, May 29, 2009
Sunday, May 24, 2009
Below Rock Bottom
Sunday, May 24th, 2009
Jacob is recovering in ICU. A couple of days ago it started with us finding out why he was getting fevers. It ended up being an intestinal infection that doctors were quite concerned about. then, with his heart rate hitting 210 they ordered an ultra sound and discovered a blood cloth in the linning of his heart. I thought that was stressing enough. I thought i had hit rock bottom....until yesterday.
He seemed to be doing fairly well. I was so excited to let you all know that he was coping well. But at 3pm yesterday, he got a nose bleed and well....it never stopped. they realize it was a problem after the first hour, by the 4th hour a room full of people were trying to control it. That's when i hit below rock bottom. They transfused him with platelets, after platelets after platelets with no end in sight. You know in the movies when someone is standing in the middle of a room and everything around them is going in slow motion and you can't hear a sound? well that was me. Then, it all came out. the tears. the sadness, the frustration, THE ANGER. I was full of rage, against everything and everyone. Jason got the worst of it. I think his chest is bruised. I didn't know what to do with myself. I still don't. For one moment. Just ONE moment i felt my child slipping away from us. Its the scariest feeling in the world. I actually felt like i was going to throw up.
Then something came over me, I had to suck it up, I didn't have a choice. The nurse needed me to climb in the bed with Jacob and hold him. I couldn't let him see me that way. Luckily my sisters were there cause i just don't know what we would have done.
Jacob got transfered to ICU for respiratory distress. He fought a nose bleed for more than 4 hours and his little body just got tired.
He is recovering in ICU and is stable now. He was talkative this morning but his nose is still plugged with pressure gauzes and is needing oxygen but doing ok.
He is a fighter! if we even had doubts before, we certainly don't anymore. So many times i've said this but I am done. I never wanted to here in the first place, I knew his body couldn't take it. We keep saying he is strong and he is a fighter but tell me, how long do we test his strenght? how long to let him fight before we say this is going to kill him and not make him better???? Yesterday, for the FIRST TIME in 6 months, Jacob said to me ''mama i don't want to do this anymore''.
So were done....for now.
Today there are signs of white cells so the transplant is doing its job. We will help him recover, take him home and love him like there's no tomorrow.
After all...this journey did start out with ''With Love Alone We Will Bring You Back To Health''
I love you Jacob.
Jacob is recovering in ICU. A couple of days ago it started with us finding out why he was getting fevers. It ended up being an intestinal infection that doctors were quite concerned about. then, with his heart rate hitting 210 they ordered an ultra sound and discovered a blood cloth in the linning of his heart. I thought that was stressing enough. I thought i had hit rock bottom....until yesterday.
He seemed to be doing fairly well. I was so excited to let you all know that he was coping well. But at 3pm yesterday, he got a nose bleed and well....it never stopped. they realize it was a problem after the first hour, by the 4th hour a room full of people were trying to control it. That's when i hit below rock bottom. They transfused him with platelets, after platelets after platelets with no end in sight. You know in the movies when someone is standing in the middle of a room and everything around them is going in slow motion and you can't hear a sound? well that was me. Then, it all came out. the tears. the sadness, the frustration, THE ANGER. I was full of rage, against everything and everyone. Jason got the worst of it. I think his chest is bruised. I didn't know what to do with myself. I still don't. For one moment. Just ONE moment i felt my child slipping away from us. Its the scariest feeling in the world. I actually felt like i was going to throw up.
Then something came over me, I had to suck it up, I didn't have a choice. The nurse needed me to climb in the bed with Jacob and hold him. I couldn't let him see me that way. Luckily my sisters were there cause i just don't know what we would have done.
Jacob got transfered to ICU for respiratory distress. He fought a nose bleed for more than 4 hours and his little body just got tired.
He is recovering in ICU and is stable now. He was talkative this morning but his nose is still plugged with pressure gauzes and is needing oxygen but doing ok.
He is a fighter! if we even had doubts before, we certainly don't anymore. So many times i've said this but I am done. I never wanted to here in the first place, I knew his body couldn't take it. We keep saying he is strong and he is a fighter but tell me, how long do we test his strenght? how long to let him fight before we say this is going to kill him and not make him better???? Yesterday, for the FIRST TIME in 6 months, Jacob said to me ''mama i don't want to do this anymore''.
So were done....for now.
Today there are signs of white cells so the transplant is doing its job. We will help him recover, take him home and love him like there's no tomorrow.
After all...this journey did start out with ''With Love Alone We Will Bring You Back To Health''
I love you Jacob.
Saturday, May 23, 2009
Turn for the Worse
Saturday May 23th, 2009
I don't have much energy or time to write tonight as I sit here in Jacob's empty room. Jacob was wheeled away to ICU tonight after things took a turn for the worst today. I promise not to wait too long to update on what happened but the reason I am writing is to ask everyone out there to please think of him tonight and keep him close to your hearts and in your prayers. Thank you.
I don't have much energy or time to write tonight as I sit here in Jacob's empty room. Jacob was wheeled away to ICU tonight after things took a turn for the worst today. I promise not to wait too long to update on what happened but the reason I am writing is to ask everyone out there to please think of him tonight and keep him close to your hearts and in your prayers. Thank you.
Monday, May 18, 2009
I don't know how to comfort him anymore
Monday, May 18th 2009
Hi there. well we have completed our first week of treatment. I am writing to you all from the apartment tonight. I am here with Liam. We FINALLY got the internet. We have had a few issues with the apartment. It is not what we had expected but it will do. It doesn't matter, its not home. I don't like being here.I don't like being anywhere anymore to be honest. I suppose I shouldn't tell you all that all I do when I come to the apartment is sit on the couch and cry. alot. I think Jason sheds a few tears in this apartment too. But i figure this is part of our journey good or bad.
I was with Jacob last night and he had a really rough night. He has a few minutes in the day where he feels nothing but most of the time this week he has been sick. He just lies there, points to his stomach and gives us this look of despair almost begging us to make it all go away. We are assuming that it is the effects of the chemo. Some days I truly question where Jacob gets his energy to open his eyes in the morning. I pray to God everynight that he will keep finding that energy to wake up. I have to be honest, some days i am so afraid he wants to or will give up. I keep having this vision. This vision of months from now after all this is said and done and after real though rehab that this time next year my jacob will be a healthy beautiful boy again.
I so desperatly want to believe it, I know Jason believes it. It seems so far away. Tomorrow seems so far away.
Jacob's counts are starting to go down, in a few days he will be neutropenic and will be at high risk of pneumonia amongs other things. He already has started developing mucositis. Vomiting and nausea are severe yet i don't know if you all noticed his smile in every picture....SOMEHOW he manages to smile for every picture we take. What you all don't know is in between pictures, he has either just been sick or would be after the picture....now tell me that doesn't deserve some respect. I don't know where he finds it in him but I adore him for that. I have nothing but respect and love and damn it we will fight with him till the very end.
Jacob is exhausted and so are we. I don't know how to comfort him anymore. I dont know what to say to him anymore or what to do to comfort his aching body and soul. Help me help him. Please. i am running out of ideas.
I have to go, Liam is crying. at least i know how to comfort him.
Hi there. well we have completed our first week of treatment. I am writing to you all from the apartment tonight. I am here with Liam. We FINALLY got the internet. We have had a few issues with the apartment. It is not what we had expected but it will do. It doesn't matter, its not home. I don't like being here.I don't like being anywhere anymore to be honest. I suppose I shouldn't tell you all that all I do when I come to the apartment is sit on the couch and cry. alot. I think Jason sheds a few tears in this apartment too. But i figure this is part of our journey good or bad.
I was with Jacob last night and he had a really rough night. He has a few minutes in the day where he feels nothing but most of the time this week he has been sick. He just lies there, points to his stomach and gives us this look of despair almost begging us to make it all go away. We are assuming that it is the effects of the chemo. Some days I truly question where Jacob gets his energy to open his eyes in the morning. I pray to God everynight that he will keep finding that energy to wake up. I have to be honest, some days i am so afraid he wants to or will give up. I keep having this vision. This vision of months from now after all this is said and done and after real though rehab that this time next year my jacob will be a healthy beautiful boy again.
I so desperatly want to believe it, I know Jason believes it. It seems so far away. Tomorrow seems so far away.
Jacob's counts are starting to go down, in a few days he will be neutropenic and will be at high risk of pneumonia amongs other things. He already has started developing mucositis. Vomiting and nausea are severe yet i don't know if you all noticed his smile in every picture....SOMEHOW he manages to smile for every picture we take. What you all don't know is in between pictures, he has either just been sick or would be after the picture....now tell me that doesn't deserve some respect. I don't know where he finds it in him but I adore him for that. I have nothing but respect and love and damn it we will fight with him till the very end.
Jacob is exhausted and so are we. I don't know how to comfort him anymore. I dont know what to say to him anymore or what to do to comfort his aching body and soul. Help me help him. Please. i am running out of ideas.
I have to go, Liam is crying. at least i know how to comfort him.
Thursday, May 14, 2009
A Brotherly Bond
Thursday May 14th, 2009
Well, Chemo is done. We had a couple of days of rest. My sister came to town and spent a couple of days with us. It was nice, Jason and I managed to go do some shopping and we bought FOUR pairs of shoes between the two of us...lol... Last night I went out to dinner with my sister and friend. It was nice. Jacob had a rough night with daddy last night, sick every couple of hours. Today was no better, very nauseous. Fever since Tuesday. Tomorrow is the transplant. I had a meeting with the charge nurse today and explained to me exactly how all of this is going to go down. The actual transplant is all of an infusion that takes a couple of minutes. Once that is done, we wait and hope for the best. That's all we can do. We wait for his stem cells to help him recover as best and as quick as he can. After that, we are hoping now to make it home for 3 or 4 days when his counts recover. Why after 6 months do i think we may actually be able to go home? not sure, but something tells me we might just be able to. I suppose some days I am more positive than I think I am. Today as sick as he was feeling, I was feeling positive that this is going to work. Tonight before Jason left with Liam, he gave me the biggest hug that he had given me in a long time and whispered I love you....at that moment for some reason, I knew everything was going to be ok. I hope so, I have to believe this is going to work because the alternative is devastating. Tonight, Jacob managed to get a bit of a second wind. We got a webcam and he said hi to his best friend and that seemed to set a sparkle...so we managed to play a couple of games. He is sound alseep now and as I start feeling the anxiety of the night shift i hope and pray to God that he will sleep peacefully tonight.
Liam is doing well. Last night he was very fussy, gave me quite a bit of a hard night but this morning when I learned of jacob's condition throughout the night I believe Liam knew his brother wasn't well. Today he slept peacefully by Jacob side most of the day. I can't wait to see them grow up together. :)
I will let you all know how the transplant goes.
Well, Chemo is done. We had a couple of days of rest. My sister came to town and spent a couple of days with us. It was nice, Jason and I managed to go do some shopping and we bought FOUR pairs of shoes between the two of us...lol... Last night I went out to dinner with my sister and friend. It was nice. Jacob had a rough night with daddy last night, sick every couple of hours. Today was no better, very nauseous. Fever since Tuesday. Tomorrow is the transplant. I had a meeting with the charge nurse today and explained to me exactly how all of this is going to go down. The actual transplant is all of an infusion that takes a couple of minutes. Once that is done, we wait and hope for the best. That's all we can do. We wait for his stem cells to help him recover as best and as quick as he can. After that, we are hoping now to make it home for 3 or 4 days when his counts recover. Why after 6 months do i think we may actually be able to go home? not sure, but something tells me we might just be able to. I suppose some days I am more positive than I think I am. Today as sick as he was feeling, I was feeling positive that this is going to work. Tonight before Jason left with Liam, he gave me the biggest hug that he had given me in a long time and whispered I love you....at that moment for some reason, I knew everything was going to be ok. I hope so, I have to believe this is going to work because the alternative is devastating. Tonight, Jacob managed to get a bit of a second wind. We got a webcam and he said hi to his best friend and that seemed to set a sparkle...so we managed to play a couple of games. He is sound alseep now and as I start feeling the anxiety of the night shift i hope and pray to God that he will sleep peacefully tonight.
Liam is doing well. Last night he was very fussy, gave me quite a bit of a hard night but this morning when I learned of jacob's condition throughout the night I believe Liam knew his brother wasn't well. Today he slept peacefully by Jacob side most of the day. I can't wait to see them grow up together. :)
I will let you all know how the transplant goes.
Tuesday, May 12, 2009
Trying to Believe
Tuesday, May 12th, 2009
Day two and last day of chemo. Jacob was well today but this evening, he is very sick with a fever. Extremely nauseous and vomiting. He was sad and frustrated and all he ever says when he throws up is "mama, its just not fair" and we always reply with "no its not". As I sit here tonight with Jacob in isolation, gowned and mask soaked from my tears I realized how run down I am. I am so relieved that this is the end of it all...but I can't see the finish line. I just can't see it. This is only day two and I just don't know where I will find that last bit of energy to get through this. I just want him home. I want my baby home. We have been at this for 6 months but all of a sudden I can't see end in sight. I told Jacob tonight that I would do everything I could to make sure he is as comfortable as can be. He made me pinky swear and said "mama, pinky swear me you won't let me stay feeling this way", i told him i promised. He is sleeping now. They gave him a little bit of a stronger drug and he is sleeping comfortably now because "I promised". He also made me promise that next summer we will go back to Marineland. He was reminiscing about our trip last summer and so desperately wants to go back. I not only promised him we would, but i told him by this time next year, he will be the boy he so wants to be again. He will have hair, he will be eating again, he won't be vomiting anymore and more importantly he will be walking and running. Again he made me pinky swear. This one made me a bit nervous because do I really believe that? today, its hard to see that far because it scares me to even think of the next hour, but tomorrow, i will try harder to believe.
Liam and Daddy are doing good. Daddy is getting through the days as I am. i will have to feed on daddy's energy for a while cause i am drained although some days i feel like daddy needs to feed on mine. My wish, is for one day again, have daddy walk through the doors of OUR HOME and say "hi family i'm home" as he always used to say when he came home from work. That is so desperately what I want again.
The next couple of days we anticipate him being sick. We are expecting the worst but hoping for the best.
Day two and last day of chemo. Jacob was well today but this evening, he is very sick with a fever. Extremely nauseous and vomiting. He was sad and frustrated and all he ever says when he throws up is "mama, its just not fair" and we always reply with "no its not". As I sit here tonight with Jacob in isolation, gowned and mask soaked from my tears I realized how run down I am. I am so relieved that this is the end of it all...but I can't see the finish line. I just can't see it. This is only day two and I just don't know where I will find that last bit of energy to get through this. I just want him home. I want my baby home. We have been at this for 6 months but all of a sudden I can't see end in sight. I told Jacob tonight that I would do everything I could to make sure he is as comfortable as can be. He made me pinky swear and said "mama, pinky swear me you won't let me stay feeling this way", i told him i promised. He is sleeping now. They gave him a little bit of a stronger drug and he is sleeping comfortably now because "I promised". He also made me promise that next summer we will go back to Marineland. He was reminiscing about our trip last summer and so desperately wants to go back. I not only promised him we would, but i told him by this time next year, he will be the boy he so wants to be again. He will have hair, he will be eating again, he won't be vomiting anymore and more importantly he will be walking and running. Again he made me pinky swear. This one made me a bit nervous because do I really believe that? today, its hard to see that far because it scares me to even think of the next hour, but tomorrow, i will try harder to believe.
Liam and Daddy are doing good. Daddy is getting through the days as I am. i will have to feed on daddy's energy for a while cause i am drained although some days i feel like daddy needs to feed on mine. My wish, is for one day again, have daddy walk through the doors of OUR HOME and say "hi family i'm home" as he always used to say when he came home from work. That is so desperately what I want again.
The next couple of days we anticipate him being sick. We are expecting the worst but hoping for the best.
Sunday, May 10, 2009
Mother's Day
Sunday, May 10th, 2009.
Happy Mother's Day to all mothers out there, thank you for the wishes.
Well, this is it. I sit here on sunday night at 10:24pm in "the room". We are officially in isolation as of 8:04pm when we moved in. I sit here as Jacob sleeps peacefully fully gowned and masked. This is our days and nights starting tonight for the rest of our stay here in Montreal.
We start treament first thing tomorrow. There's no looking back now. I had a rush of emotions after our family and friends left today. It felt real all of a sudden because most of the people who adore Jacob with all their hearts will not see him for a while. I also realised that this was it. Although the beginning of this treatment it is the end of treatments for us. It means, no more after this, wether the tumor is completely gone OR NOT this is it. Its relief and fear all mixed into one big giant ball. The feeling is so overwhelming at times i feel like i am being crushed by it.
This morning I woke up not knowing how and where I was going to find that extra boost i needed to get through this. But its all your emails and messages that keep me going. Today I received a very inspiring email from an old high school friend whom I haven't seen in more than 15 years. She is a mother of three now and her words were so overpowering that it made me realize that I can't give up now. I can't turn away from my Jacob now so I will hold on to him and those words from her for dear life and give it all i've got. i didn't think i had anything left in me to give but as I sit here and think of my beautiful two boys and a wonderful loving husband and father, how can we stop now?
Liam is doing great. He is a god sent. He is calm and beautiful and everything we need him to be right now. Jason is also doing ok. I see the fear in his eyes at times, although he would never admit, I see the sadness but he is fighter and is not planning on giving up anytime soon. He has been staying at the apartment so far with Liam and he is enjoying his time with his baby boy.
I will start decorating Jacob's room tomorrow in hopes that it makes him feel a little more at ease. He misses CHEO, he misses his friends at CHEO. He asked to send a message to one of them yesterday, so I did. I dictated the message....gave Jacob a kiss, walked out of the room and CRIED!! Its just not the same.
Thank you all for your love and support....we wouldn't get through the days without it all.
Happy Mother's Day to all mothers out there, thank you for the wishes.
Well, this is it. I sit here on sunday night at 10:24pm in "the room". We are officially in isolation as of 8:04pm when we moved in. I sit here as Jacob sleeps peacefully fully gowned and masked. This is our days and nights starting tonight for the rest of our stay here in Montreal.
We start treament first thing tomorrow. There's no looking back now. I had a rush of emotions after our family and friends left today. It felt real all of a sudden because most of the people who adore Jacob with all their hearts will not see him for a while. I also realised that this was it. Although the beginning of this treatment it is the end of treatments for us. It means, no more after this, wether the tumor is completely gone OR NOT this is it. Its relief and fear all mixed into one big giant ball. The feeling is so overwhelming at times i feel like i am being crushed by it.
This morning I woke up not knowing how and where I was going to find that extra boost i needed to get through this. But its all your emails and messages that keep me going. Today I received a very inspiring email from an old high school friend whom I haven't seen in more than 15 years. She is a mother of three now and her words were so overpowering that it made me realize that I can't give up now. I can't turn away from my Jacob now so I will hold on to him and those words from her for dear life and give it all i've got. i didn't think i had anything left in me to give but as I sit here and think of my beautiful two boys and a wonderful loving husband and father, how can we stop now?
Liam is doing great. He is a god sent. He is calm and beautiful and everything we need him to be right now. Jason is also doing ok. I see the fear in his eyes at times, although he would never admit, I see the sadness but he is fighter and is not planning on giving up anytime soon. He has been staying at the apartment so far with Liam and he is enjoying his time with his baby boy.
I will start decorating Jacob's room tomorrow in hopes that it makes him feel a little more at ease. He misses CHEO, he misses his friends at CHEO. He asked to send a message to one of them yesterday, so I did. I dictated the message....gave Jacob a kiss, walked out of the room and CRIED!! Its just not the same.
Thank you all for your love and support....we wouldn't get through the days without it all.
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