Sunday June 21st, 2009
well we are back home and back to normal. we had a great father's day. we went to my parents and it was the first time we ALL had been together again in 7 and a half months. See, my family and I(composed of my parents, 4 sisters, 2 brother in laws, a fiance with two children and 5 grandchildren) still get together for EVERY single holiday, birthday, special occasions and our family had not been complete in the last 7 months until today. We had a beautiful day. I had a moment as i sat there and looked at everyone and realized this could be the last father's day with my father, as he is very ill at this time. I also realized this could be the last father's day with my son. Its things I think of. I don't want to, and I don't think about it all the time but at times, reality is, it may just be the last of everything.
As we were being discharged on saturday evening from CHEO, a mother of a boy who shall remain nameless came to our room to say goodbye. We had seen each other ALOT the last 6 months in 4N but only started talking to each other about two weeks before our departure to Montreal. SHe walked in and walked out just as fast as tears started pouring down. She couldn't control it anymore. I joined her. They had received some bad news about their beautiful beautiful boy and as we have also realized, there is just nothing else that can be done for our children. I followed her to the stairwell and we both said nothing. just cried. why? because we both knew that we may lose our babies someday and there's just nothing else we can do except love them with all our being. She asked me how we were able to make the decision of bringing Jacob home. I told her we just knew. I told her, her heart will know when its time to say enough and take her baby home and love him like there's no tomorrow. it was a moment that i could not and will probably never share with another mother who at that very moment could honestly say she knew exactly how I felt. She said she had so many questions for God. She said she wished she could sit one on one with God and ask him why. I myself, have stopped asking why. I am very sad. I am very angry. I dont understand any of this and will NEVER accept what has happened but i've stopped asking why.
This week, we have a hearing test, clinic visits, speech and eating therapy. It will be busy but once again we will start our day as a family. A family that will cherish forever.
Jason, Happy father's day. I hope you liked Jacob's gift. I am honored to be the mother of your children. You are the best dada ever. The love that you have for Jacob and Liam is beyond anything I could ever ask for in a husband and the father of my beautiful children.
Jason, mon mari, mon amour....je t'aime.
Sunday, June 21, 2009
Saturday, June 20, 2009
Back in the Hospital
Saturday, June 20th 2009
Hi Everyone,
Sorry for the delay, things have been quite busy but fun at home. Thank you all for wanting updates. I know alot of you thank me for the updates but truth be told this is therapy for me to be able to write down all that is happening, good or bad. There's a comfort of some sort knowing that you all share my tears and smiles.
Well, we made it two weeks at home. Its been great. Jacob is still sick but enjoying every minute of being home. A few days ago we did see a bit of a change in him. More nauseous than usual, a little pale and well thrursday spiked a fever so here we are back at CHEO. He is doing well but was readmitted and put on antibiotics. Its to be expected I suppose, it has only been a month since his transplant. He is doing well however, still in good spirits. We are hoping its just a bug that he may have caught and will vanish as quickly as it appeared.
We are adjusting well. Between all of Jacob's medication to be given and all his appts, we are slowly getting a routine together. My house is still a mess and unorganized. My husband and I are still getting on each other's nerves but I am still loving it!!!! Oh and to add to our chaos, we got Jacob his puppy that was promised when he got home. Its a weiner dog!!!!! lol I wonder somedays if it was bought more for Jacob or Jason! lol Things couldn't be any crazier but boy i never thought i would love having a "normal" life again as much as i do right now.
The big news for this week. Jacob is now taking small sips of water. His swallowing is getting so much better and he scared the crap out of Jason and I the other day when he literally gulped down some flavored water from a bottle. You actually heard him swallow. We froze thinking he was going to choke but he followed his swallow with a big.....ahhhhhhhhhhhhhhhhh! OMG! we couldn't believe it. Shortly after he threw up. ALOT. everything he had drank but its then we realized that the biggest issue and hardest part of rehab will be teaching his stomach how to digest again, after all he hasn't had ANYTHING in his tummy in 7 months. We are very excited for him to start learning how to eat again. His first appt is on tuesday. I can't wait to come back and tell you all how he is doing.
Jacob may be back in hospital now but is doing well....just wanted to let you all know.
Hi Everyone,
Sorry for the delay, things have been quite busy but fun at home. Thank you all for wanting updates. I know alot of you thank me for the updates but truth be told this is therapy for me to be able to write down all that is happening, good or bad. There's a comfort of some sort knowing that you all share my tears and smiles.
Well, we made it two weeks at home. Its been great. Jacob is still sick but enjoying every minute of being home. A few days ago we did see a bit of a change in him. More nauseous than usual, a little pale and well thrursday spiked a fever so here we are back at CHEO. He is doing well but was readmitted and put on antibiotics. Its to be expected I suppose, it has only been a month since his transplant. He is doing well however, still in good spirits. We are hoping its just a bug that he may have caught and will vanish as quickly as it appeared.
We are adjusting well. Between all of Jacob's medication to be given and all his appts, we are slowly getting a routine together. My house is still a mess and unorganized. My husband and I are still getting on each other's nerves but I am still loving it!!!! Oh and to add to our chaos, we got Jacob his puppy that was promised when he got home. Its a weiner dog!!!!! lol I wonder somedays if it was bought more for Jacob or Jason! lol Things couldn't be any crazier but boy i never thought i would love having a "normal" life again as much as i do right now.
The big news for this week. Jacob is now taking small sips of water. His swallowing is getting so much better and he scared the crap out of Jason and I the other day when he literally gulped down some flavored water from a bottle. You actually heard him swallow. We froze thinking he was going to choke but he followed his swallow with a big.....ahhhhhhhhhhhhhhhhh! OMG! we couldn't believe it. Shortly after he threw up. ALOT. everything he had drank but its then we realized that the biggest issue and hardest part of rehab will be teaching his stomach how to digest again, after all he hasn't had ANYTHING in his tummy in 7 months. We are very excited for him to start learning how to eat again. His first appt is on tuesday. I can't wait to come back and tell you all how he is doing.
Jacob may be back in hospital now but is doing well....just wanted to let you all know.
Friday, June 12, 2009
It hit me all at once
Friday June 12th, 2009
I write to you all tonight as my son sits on the floor in his room playing with his best friend Pat. I just finished a chuckle out loud with Jason after one of Jacob's funny smart comments he always makes. My baby is back. Maybe not a 100% but his sense of humour, his laughter and his smarts are back.
I am very overwhelmed tonight. Overwhelmed with happiness from being home, overwhelmed with exhaustion and overwhelmed with how much organizing there is to do here. I was sitting on my deck earlier, what a beautiful evening it was and I just started to cry. I felt very nolstagic. Must be the weather but all of a sudden I got a flashback of going for a drive to Dairy Queen with Jacob and Jason and realized i can't do that anymore. I am SOOOOOO happy Jacob is home, you have no idea but it hit me at that moment that i wish things werent how they are. It hit me that my son has cancer, it hit me that he is sick, it hit me that we can't have bbq's anymore, it hit me that i just went through an entire pregnancy and that i had a baby as I here Liam crying from is swing. It all just hit me tonight. After having Liam i knew i couldn't take a break. I knew if I stopped, even for one moment I would crash...so i kept going. it almost happened tonight but as I here Jacob's laughter in the background with Pat being silly and crawling on the floor i take a deep breath and remind myself.....One Day at a Time.
Last night, Jacob and I had a little emergency visit at CHEO. No big deal but as we were changing his shirt we noticed his dressing for his central line was off and exposed. It was a bit scary but we quickly headed to 4N at CHEO and they welcomed us with open arms and took care of him very quickly. Thank you Kim, Jill, Shamila and Pat. Upon returning home Jacob thanked us as we tucked him into his bed. He said "mama, dada, thank you for listening to me and bringing me home". I couldn't hold back the tears. I turned around and thanked Jason for letting us bring him home.
Jacob is doing great. So are we. we are tired but i think Jason pauses at times just like me and just can't believe we are home.
we are home!
I write to you all tonight as my son sits on the floor in his room playing with his best friend Pat. I just finished a chuckle out loud with Jason after one of Jacob's funny smart comments he always makes. My baby is back. Maybe not a 100% but his sense of humour, his laughter and his smarts are back.
I am very overwhelmed tonight. Overwhelmed with happiness from being home, overwhelmed with exhaustion and overwhelmed with how much organizing there is to do here. I was sitting on my deck earlier, what a beautiful evening it was and I just started to cry. I felt very nolstagic. Must be the weather but all of a sudden I got a flashback of going for a drive to Dairy Queen with Jacob and Jason and realized i can't do that anymore. I am SOOOOOO happy Jacob is home, you have no idea but it hit me at that moment that i wish things werent how they are. It hit me that my son has cancer, it hit me that he is sick, it hit me that we can't have bbq's anymore, it hit me that i just went through an entire pregnancy and that i had a baby as I here Liam crying from is swing. It all just hit me tonight. After having Liam i knew i couldn't take a break. I knew if I stopped, even for one moment I would crash...so i kept going. it almost happened tonight but as I here Jacob's laughter in the background with Pat being silly and crawling on the floor i take a deep breath and remind myself.....One Day at a Time.
Last night, Jacob and I had a little emergency visit at CHEO. No big deal but as we were changing his shirt we noticed his dressing for his central line was off and exposed. It was a bit scary but we quickly headed to 4N at CHEO and they welcomed us with open arms and took care of him very quickly. Thank you Kim, Jill, Shamila and Pat. Upon returning home Jacob thanked us as we tucked him into his bed. He said "mama, dada, thank you for listening to me and bringing me home". I couldn't hold back the tears. I turned around and thanked Jason for letting us bring him home.
Jacob is doing great. So are we. we are tired but i think Jason pauses at times just like me and just can't believe we are home.
we are home!
Tuesday, June 9, 2009
Let the Healing and Living Begin!
Tuesday June 9th, 2009
Well, I think its time for an update. Wow! thank you everyone for your support and for all those who judged...as some of you said...shame on you!! As Carol Bean put it in in her poem "I Hope"...I hope you never have to experience any of these things...Because...only then... Will you understand.
Day 4 of being home and well remember when I said i would do anything to go back to my old routine, well, my house is a mess, i have two children who cry and whine at the same time and who want everything as soon as they ask for it, my husband and I are getting on each other's nerves trying to get the house organized and well....I LOVE IT!!! :) :)
We are not quite there yet and we have a long road ahead of us but I am happy to say Jacob is doing as good as we can ask for. Busy week this week with many appts at CHEO but the best part is we get to come home. Jacob is still sick at times with vomiting and tummy pains but it is manageable and i am loving tucking him into his bed every night. Its what every mother dreams of but you don't realize just how much until it is taken away from you.
So many of you sent me inspiring messages and that is what gets me through the days knowing we have so much support and so much love and thoughts coming Jacob's way. You all have been such a wonderful support system for Jason and I and we are thankful.
This week was doctors appt and next week we start therapy for his legs and well the most important part...help him learn how to eat and drink again. I am scared but looking forward to it. The Christmas tree came down yesterday. It wasn't quite the xmas in july we planned since he is still not eating but the deal was the tree stayed up til he came home and well...he came home. I still can't believe i am writing these words. I never thought we would make it here and the thought of still being in Montreal had we not decided to come home makes me literally sick to my stomach.
there's no looking back now....as Heather Lindsey put it...
Let the healing, and the living begin!!! :)
Well, I think its time for an update. Wow! thank you everyone for your support and for all those who judged...as some of you said...shame on you!! As Carol Bean put it in in her poem "I Hope"...I hope you never have to experience any of these things...Because...only then... Will you understand.
Day 4 of being home and well remember when I said i would do anything to go back to my old routine, well, my house is a mess, i have two children who cry and whine at the same time and who want everything as soon as they ask for it, my husband and I are getting on each other's nerves trying to get the house organized and well....I LOVE IT!!! :) :)
We are not quite there yet and we have a long road ahead of us but I am happy to say Jacob is doing as good as we can ask for. Busy week this week with many appts at CHEO but the best part is we get to come home. Jacob is still sick at times with vomiting and tummy pains but it is manageable and i am loving tucking him into his bed every night. Its what every mother dreams of but you don't realize just how much until it is taken away from you.
So many of you sent me inspiring messages and that is what gets me through the days knowing we have so much support and so much love and thoughts coming Jacob's way. You all have been such a wonderful support system for Jason and I and we are thankful.
This week was doctors appt and next week we start therapy for his legs and well the most important part...help him learn how to eat and drink again. I am scared but looking forward to it. The Christmas tree came down yesterday. It wasn't quite the xmas in july we planned since he is still not eating but the deal was the tree stayed up til he came home and well...he came home. I still can't believe i am writing these words. I never thought we would make it here and the thought of still being in Montreal had we not decided to come home makes me literally sick to my stomach.
there's no looking back now....as Heather Lindsey put it...
Let the healing, and the living begin!!! :)
Saturday, June 6, 2009
We are Home!
Saturday June 6 th, 2009
Good Evening everyone and what a good evening it is. I am writing to you all tonight from 116 Lamoureux Gatineau, QC, OUR HOME!
We brought Jacob home today. To stay. Yesterday, Jason and I made the mutual decision to stop treatments and bring our baby home. NO MORE! No more treatments, no more chemo, no more antibiotics. Jacob was done and we followed our gut and listened to what his body was telling us. People can judge all they want, but you have no idea until you walk in these shoes.
There are many factors that brought us here and it was not an easy decision to make at first but the risks were too great and we just weren't willing to take that chance anymore. If Jacob comes out of this barely able to function in life then this "study" is not worth my son's life. We felt great yesterday, it was like a ton was lifted off our shoulders, we feel even better today.
I have been trying to put into words the last couple of weeks how I was feeling and I just couldn't. When CHEO found out we were coming home one of our wonderful team leader sent me an email and told me a story about this woman who 20 years ago did the same thing and stopped her son's treatments. She said to her "I'm not afraid of my son dying anymore, I am afraid of him not living and then dying"....OMG! that's it!!! that's exactly it, if I could have put into words it says exactly what my gut has been feeling all along. I have accepted the fact that I may lose my child someday but i'll be damned if he goes like this. I want him to live life to the fullest.
So there you have it....we are back home and giving Jacob the chance to live. We are very excited about starting rehab and help him walk again, EAT again, run again and go to school like any 5 year old should!
I look forward to letting you all know how he is doing.
Oh and by the way...the doctor's exact words to us before she walked out of the room after we told her we were done were....
"I think you both made the right decision".
:)
Good Evening everyone and what a good evening it is. I am writing to you all tonight from 116 Lamoureux Gatineau, QC, OUR HOME!
We brought Jacob home today. To stay. Yesterday, Jason and I made the mutual decision to stop treatments and bring our baby home. NO MORE! No more treatments, no more chemo, no more antibiotics. Jacob was done and we followed our gut and listened to what his body was telling us. People can judge all they want, but you have no idea until you walk in these shoes.
There are many factors that brought us here and it was not an easy decision to make at first but the risks were too great and we just weren't willing to take that chance anymore. If Jacob comes out of this barely able to function in life then this "study" is not worth my son's life. We felt great yesterday, it was like a ton was lifted off our shoulders, we feel even better today.
I have been trying to put into words the last couple of weeks how I was feeling and I just couldn't. When CHEO found out we were coming home one of our wonderful team leader sent me an email and told me a story about this woman who 20 years ago did the same thing and stopped her son's treatments. She said to her "I'm not afraid of my son dying anymore, I am afraid of him not living and then dying"....OMG! that's it!!! that's exactly it, if I could have put into words it says exactly what my gut has been feeling all along. I have accepted the fact that I may lose my child someday but i'll be damned if he goes like this. I want him to live life to the fullest.
So there you have it....we are back home and giving Jacob the chance to live. We are very excited about starting rehab and help him walk again, EAT again, run again and go to school like any 5 year old should!
I look forward to letting you all know how he is doing.
Oh and by the way...the doctor's exact words to us before she walked out of the room after we told her we were done were....
"I think you both made the right decision".
:)
Tuesday, June 2, 2009
He is like a Broken Toy
Tuesday June 2nd, 2009
Today is our 7 month anniversary and no where near where we thought we would be yet have come so far.
Jacob is doing well. Getting through the days as best as possible. He isn't my Jacob these days. he's changed. That spark that he still had in his eyes is no longer there. I know he is done with all of this. i know because he told me so. I want to listen to him, I want to take him home, I want to listen to what he is telling me but no one else is listening. He is telling us he is done. He says with words but even more he says it with his body language, the way he looks at us, the way he moves, the way he just stares at the tv all day but i don't think he is actually watching it.
Today, Jacob had his hearing test and there is significant hearing loss since the last chemo treatment. For those who don't know, Jacob is already deaf from one ear, it is a permanent deafness that cannot be corrected with a hearing aid so he only has one good ear "l'oreille precieuse" they call it at Ste-Justine. I knew something was up from the last week we have had to repeat ourselves ALOT for him to answer back. I was hoping it was selective hearing but unfortunetly my gut was right.
There are no words to describe how I am feeling tonight. the tears that fall down my cheeks tonight are different kind of tears. They are tears of surrender. I want to surrender and just take him home.
Tonight, I feel as a mother I have let Jacob down. I feel like i should have protected him from harm instead have trusted his life in all these doctors hands and I have let them break him. He is like a broken toy and I have let him down when i should have been proctecting him.
I hope he forgives me someday.
He is doing well these days I thought I would let you all know.
Jason and I are now back to square one and not sure if we go on. We are torn. The doctor i think saw our desperation today and told us they would review all his tests including the most important one, the MRI, and she said together we will decide if we go on or not together. Perhaps some damage resulting from the CHEMO may just not be worth it. All I want at this point is to take my child home and let him be a child and give him the best quality of life for as long as that will be. I don't know what Jason wants anymore but I know what I want.
I want my Jacob back.
Today is our 7 month anniversary and no where near where we thought we would be yet have come so far.
Jacob is doing well. Getting through the days as best as possible. He isn't my Jacob these days. he's changed. That spark that he still had in his eyes is no longer there. I know he is done with all of this. i know because he told me so. I want to listen to him, I want to take him home, I want to listen to what he is telling me but no one else is listening. He is telling us he is done. He says with words but even more he says it with his body language, the way he looks at us, the way he moves, the way he just stares at the tv all day but i don't think he is actually watching it.
Today, Jacob had his hearing test and there is significant hearing loss since the last chemo treatment. For those who don't know, Jacob is already deaf from one ear, it is a permanent deafness that cannot be corrected with a hearing aid so he only has one good ear "l'oreille precieuse" they call it at Ste-Justine. I knew something was up from the last week we have had to repeat ourselves ALOT for him to answer back. I was hoping it was selective hearing but unfortunetly my gut was right.
There are no words to describe how I am feeling tonight. the tears that fall down my cheeks tonight are different kind of tears. They are tears of surrender. I want to surrender and just take him home.
Tonight, I feel as a mother I have let Jacob down. I feel like i should have protected him from harm instead have trusted his life in all these doctors hands and I have let them break him. He is like a broken toy and I have let him down when i should have been proctecting him.
I hope he forgives me someday.
He is doing well these days I thought I would let you all know.
Jason and I are now back to square one and not sure if we go on. We are torn. The doctor i think saw our desperation today and told us they would review all his tests including the most important one, the MRI, and she said together we will decide if we go on or not together. Perhaps some damage resulting from the CHEMO may just not be worth it. All I want at this point is to take my child home and let him be a child and give him the best quality of life for as long as that will be. I don't know what Jason wants anymore but I know what I want.
I want my Jacob back.
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