March 11th, 2010
Hi Everyone,
I always have to start by thanking everyone who keeps checking in for updates and all the messages I get asking for updates when its been a while. I was always and still am very overwhelmed with this love for my family.
I didn't want this update to be a sad so I will start with the good in our lives and oh is there ever lots of that. Jacob is well, saying he is doing great is understating the fact. The fact is he is living the life of a child who was never sick. And funny as I write this sentence, once again its brings me to tears. I haven't updated in a while cause mama has been in a funk. This one's a doozy. Again, its funny cause this is the best time of my life, this is the best time my family has seen in what seems like forever, yet I am always sad but sad inside. My outside is so overjoyed with getting to take Jacob to school everyday but my insides are hurting. I have been grieving a few things this past month. My father for one, I don't stop thinking of him. I miss him now more than I did just a month ago. As time goes on I realize he really is not coming back and it breaks my heart into pieces.
Second, I have been grieving what used to be. I am mad at myself. I am mad that I even think about it but the reality is that Jacob's drastic physical changes are a constant reminder that life will never be the same. Not being the same is an okay thing cause we are in a good place but I have been sad and grieving who he once looked like. I know, its horrible because I should be grateful that he is alive and I really don't have to tell anyone that I am grateful for that. But his physical changes are there and it has been reminding me that I could lose him one day. Any day really. I think these feelings have been more intense lately because I realize that this child really is a miracle. really!! I have known a handful of families who actually have lost their children. They are really gone, these families have buried their children. Crazy thought, isnt? Some a while ago, some yesterday, some in the very near future. Its crazy, its crazy to think that I could lose Jacob someday. I am sobbing like a big baby right now writing this and I shouldn't be. Its only been in the last couple of months that I have been feeling like this and I just can't seem to shake it off. I am angry. I am angry at the powers above who or what ever it is. I am praying to a God that I just don't believe in anymore. I am confused.
I am also grieving for frienships that have come and gone and although some are just not worth the tears I just don't understand how someone can walk away from me life at a time where I was watching my son slowly slip away from me just to find out this whole time i was being blamed. Crazy stuff but that's been my state of mind lately.
Now, on a happy, very happy note. We are doing great. Jacob is a normal kid, so normal he came home today with a bloody knee from falling at recess. OMG, you have no idea what kind a feeling that is. lol I love him, I love him so at times I don't know what to do with all this love that I feel for him, for Liam, for my whole family.
Liam is the joy of this family. You can almost say he is the miracle of this family and how he came into our lives at a time where it was chaos is a blessing. He will be a year soon. can you believe it? Almost a year!!! The one thing that does make me give myself a good shake is just thinking of where we were a year ago and all these feelings(even if its for a brief moment) just disappear!! Just like that, when I think about the fact that it could have been me "sitting in a funeral home waiting for the director" makes all these feelings I described above disappear. :)
Jacob's last MRI scheduled in February was cancelled as he and the entire family was very sick. It has been rescheduled for March 25th. I am scared. Every single one of them scare me. This one especially. Don't know why, it just does. I will make sure to send you all an update after we get those results.
I also wanted to say, that for every friend I have lost throughout this journey, you all have MORE than made up for. I have met and made some pretty incredible friends. Friends that make me laugh every day. That wipe my tears when they fall and pick me up when I am down on my knees. Thank you to all those friends, to my family, to every member of Jacob's Journey. Without you, I would not be as strong as I have been able to be.
Thank you. oxo
Liliane
RIP Ali, Montana, Maddy and Layla Grace
Thursday, March 11, 2010
Wednesday, January 6, 2010
Mother's Intuition
Wednesday, January 6th, 2010
Hello Everyone,
I would like to wish everyone a Happy New Year. I hope everyone enjoyed their family and friends and for those who were celebrating without loved ones this year, my heart goes out to you. My love goes out to you all.
We had a wonderful Christmas. It was everything I could have hoped for. Ringing in the new year with my Jacob. The only thing I could have asked for was for my daddy to be there when the clock struck midnight. It was the saddest moment for all of us to turn to that couch where he ALWAYS used to sit and not have him there. It was the hardest moment out of all the holidays. I miss him dearly.
I am writing to you today because we had our MRI results. The one from November. The results were the same. Tumor is stable and Jacob is still considered their miracle child. To us, he is our life. The reason I get up every morning, just to hear to the words "good morning mama"...it never gets old. :)
The results were what we were hoping for, however...We got some other quite disturbing news. Now, to some of you it may not be a big deal, some may not see how significant this is, but its HUGE. It left me....speechless.
Our doctor, his head doctor who has been following us from the begining came in the room and said "I have news for you". She followed by telling us that the "study" that Jacob was on, the protocol that I felt was killing him slowly, the treatments that Jason and I so difficulty agonized over stopping was SHUTDOWN! It was shutdown due to toxicity!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! They stopped this protocol, they shutdown the program because it was TOO TOXIC. The same one that I took my son away from was slowly poisining him and going to kill him. I am to say the least, overwhelmed this evening. I am happy, I am sad, I have shed tears, I am angry. I am angry at all of it. I spoke with a friend this evening who didn't seem to make a big deal out of it. She just didn't get it, so i laughed it off and hung up the phone and cried and decided to just not tell anyone else my news. But as I write it now, i realize how huge this is. I suppose now if anything ever should happen, heaven forbid, Jason and I can be at peace with our decision. I had no regrets when I made the decision, I didn't have any before today either but there was always this little tiny tiny tiny part of me wondered what if....not anymore! I have to leave the past behind me now and move on and do exactly what I wanted to do which was live my life with Jacob and live every day like it is our last.
OMG! i still can't believe it. I don't have all the details and frankly I shouldn't want to but I am going to contact the doctor next week and ask for more details. All she said to me when she told me was "I guess you just knew". So that's my news. Sorry for the ones I almost gave a heart attack to. Its just huge.
Bottom line here, don't mess around with a mother's instinct!!!! lol Its the best power anyone could ever have.
Jacob is doing well. He has been having headaches for the last two days which we must now monitor but if no vomitting follows we should be fine...i am scared, i can't lie. everyday i am scared. Everyday I think what if I lost him but at the same time, everyday is a great day with Jacob by my side.
The rest of the family is well. Jason is back full force at work. Liam, well he is perfection. :) Liam and Jacob have a very special bond that would make your heart melt.
We have a very busy month ahead. So many appts, so many more decisions to make.
Wishing everyone well and a thank you to all those who read this. I needed to share.
Hello Everyone,
I would like to wish everyone a Happy New Year. I hope everyone enjoyed their family and friends and for those who were celebrating without loved ones this year, my heart goes out to you. My love goes out to you all.
We had a wonderful Christmas. It was everything I could have hoped for. Ringing in the new year with my Jacob. The only thing I could have asked for was for my daddy to be there when the clock struck midnight. It was the saddest moment for all of us to turn to that couch where he ALWAYS used to sit and not have him there. It was the hardest moment out of all the holidays. I miss him dearly.
I am writing to you today because we had our MRI results. The one from November. The results were the same. Tumor is stable and Jacob is still considered their miracle child. To us, he is our life. The reason I get up every morning, just to hear to the words "good morning mama"...it never gets old. :)
The results were what we were hoping for, however...We got some other quite disturbing news. Now, to some of you it may not be a big deal, some may not see how significant this is, but its HUGE. It left me....speechless.
Our doctor, his head doctor who has been following us from the begining came in the room and said "I have news for you". She followed by telling us that the "study" that Jacob was on, the protocol that I felt was killing him slowly, the treatments that Jason and I so difficulty agonized over stopping was SHUTDOWN! It was shutdown due to toxicity!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! They stopped this protocol, they shutdown the program because it was TOO TOXIC. The same one that I took my son away from was slowly poisining him and going to kill him. I am to say the least, overwhelmed this evening. I am happy, I am sad, I have shed tears, I am angry. I am angry at all of it. I spoke with a friend this evening who didn't seem to make a big deal out of it. She just didn't get it, so i laughed it off and hung up the phone and cried and decided to just not tell anyone else my news. But as I write it now, i realize how huge this is. I suppose now if anything ever should happen, heaven forbid, Jason and I can be at peace with our decision. I had no regrets when I made the decision, I didn't have any before today either but there was always this little tiny tiny tiny part of me wondered what if....not anymore! I have to leave the past behind me now and move on and do exactly what I wanted to do which was live my life with Jacob and live every day like it is our last.
OMG! i still can't believe it. I don't have all the details and frankly I shouldn't want to but I am going to contact the doctor next week and ask for more details. All she said to me when she told me was "I guess you just knew". So that's my news. Sorry for the ones I almost gave a heart attack to. Its just huge.
Bottom line here, don't mess around with a mother's instinct!!!! lol Its the best power anyone could ever have.
Jacob is doing well. He has been having headaches for the last two days which we must now monitor but if no vomitting follows we should be fine...i am scared, i can't lie. everyday i am scared. Everyday I think what if I lost him but at the same time, everyday is a great day with Jacob by my side.
The rest of the family is well. Jason is back full force at work. Liam, well he is perfection. :) Liam and Jacob have a very special bond that would make your heart melt.
We have a very busy month ahead. So many appts, so many more decisions to make.
Wishing everyone well and a thank you to all those who read this. I needed to share.
Friday, December 18, 2009
Making Memories
Friday, December 18th, 2009
Hi Everyone,
Its time for an update. I don't know where to start. My mind has been spinning a hundred miles an hour for weeks now. Its full. It just won't stop. Sometimes, my head is spinning so fast I can't find it in me to turn my thoughts into to words. My last update , we were getting ready for Disney. We had a fantastic time. The weather decided not to be nice to us and didn't cooperate in any way but we made the best of it. We were sent to "Give Kids The World". It was in no other words: MAGICAL! We had a beautiful Villa and Jacob, who was nicknamed Master Jacob for the week was exactly that, A Master. He was the King of the World for 6 days and I don't think he will ever forget it. Neither will we, by far. To have had this opportunity to make these unforgettable memories with him is beyond any feeling I could ever describe. Some days I think WOW! I can't wait to go back. Some other days, where my day is a bit darker, I think WOW! that may be the last thing I ever do with him. I know, it sounds selfish but that's just the way it is. I can't help it. But we had the best moments ever. Thank you to the Children's Wish Foundation of Canada. If you ever are looking for a charity to donate. There is just no price for the opportunity they gave me and my family. Just no price. I will post pictures soon.
Today, I went to Jacob's school for his Christmas concert. He went up on stage, didn't know a word to the songs but I still cried. I bawled actually. I'm good at doing that discretly now but i did it. To see him stand up there, it was more than I could handle.
I did notice however today how much he is struggling to keep up. To keep up with school work, to keep up with the environment, to keep up with the atmosphere, the speed of things and to keep up with his friends. Sometimes, I get scared that his friends won't want to eventually play with him anymore because he just can't keep up, or because he cries so easily. He gets frustrated so quickly. I wish I could shake it off of him but I just can't. It doesn't take much for him to get so overwhelmed. It makes me sad, yet he has the best of friends in his class who are right there to help him or console him when he is sad. Its incredible. They are incredible children and were brought up very well.
Christmas is approaching. This is not a good time for me. First because I still can't believe my father won't be here. My first Christmas without my daddy and it could be my last with Jacob. It is so overwhelming and I hope none of you every have to have these horrible thoughts that poison your mind. Second, last year at this time, was one of our darkest hours with Jacob. Most of you didn't know us at this time last year as I didn't start Jacob's Journey before February but it was the worst time in our lives. Jacob was ill with pneumonia. I remember x-mas eve, i remember the dark room. I remember the sound of the oxygen on FULL BLAST. I remember him barely waking up. I remember thinking I will have to say goodbye to my son on x-mas. What a vicious vicious thought. Last Year on boxing day, Jacob was shipped to Mtl for his stem cell collection. We ended up being there through New Year. It was one of my many, but one of my darkest hour. I was in a deep deep dark hole, and this time of year just brings it all back. It still hurts.
On a good note though, this year, we get to have a Christmas. It may be without my daddy, who i miss so much, but it will be with a Jacob that will be home, with a little boy who can eat. I will make sure there is LOTS and LOTS and LOTS of food. I will make up for the 8 months he was not able to eat.
This year, It will be another memory. It will be Liam's first Christmas. It will be, a WONDERFUL CHRISTMAS. :)
No MRI results before January 6th. I was a little upset that they didn't book us in but not anymore. It will be a wonderful Christmas.
Happy Holidays to all and thank you "infiniment" for your support and your love.
Hi Everyone,
Its time for an update. I don't know where to start. My mind has been spinning a hundred miles an hour for weeks now. Its full. It just won't stop. Sometimes, my head is spinning so fast I can't find it in me to turn my thoughts into to words. My last update , we were getting ready for Disney. We had a fantastic time. The weather decided not to be nice to us and didn't cooperate in any way but we made the best of it. We were sent to "Give Kids The World". It was in no other words: MAGICAL! We had a beautiful Villa and Jacob, who was nicknamed Master Jacob for the week was exactly that, A Master. He was the King of the World for 6 days and I don't think he will ever forget it. Neither will we, by far. To have had this opportunity to make these unforgettable memories with him is beyond any feeling I could ever describe. Some days I think WOW! I can't wait to go back. Some other days, where my day is a bit darker, I think WOW! that may be the last thing I ever do with him. I know, it sounds selfish but that's just the way it is. I can't help it. But we had the best moments ever. Thank you to the Children's Wish Foundation of Canada. If you ever are looking for a charity to donate. There is just no price for the opportunity they gave me and my family. Just no price. I will post pictures soon.
Today, I went to Jacob's school for his Christmas concert. He went up on stage, didn't know a word to the songs but I still cried. I bawled actually. I'm good at doing that discretly now but i did it. To see him stand up there, it was more than I could handle.
I did notice however today how much he is struggling to keep up. To keep up with school work, to keep up with the environment, to keep up with the atmosphere, the speed of things and to keep up with his friends. Sometimes, I get scared that his friends won't want to eventually play with him anymore because he just can't keep up, or because he cries so easily. He gets frustrated so quickly. I wish I could shake it off of him but I just can't. It doesn't take much for him to get so overwhelmed. It makes me sad, yet he has the best of friends in his class who are right there to help him or console him when he is sad. Its incredible. They are incredible children and were brought up very well.
Christmas is approaching. This is not a good time for me. First because I still can't believe my father won't be here. My first Christmas without my daddy and it could be my last with Jacob. It is so overwhelming and I hope none of you every have to have these horrible thoughts that poison your mind. Second, last year at this time, was one of our darkest hours with Jacob. Most of you didn't know us at this time last year as I didn't start Jacob's Journey before February but it was the worst time in our lives. Jacob was ill with pneumonia. I remember x-mas eve, i remember the dark room. I remember the sound of the oxygen on FULL BLAST. I remember him barely waking up. I remember thinking I will have to say goodbye to my son on x-mas. What a vicious vicious thought. Last Year on boxing day, Jacob was shipped to Mtl for his stem cell collection. We ended up being there through New Year. It was one of my many, but one of my darkest hour. I was in a deep deep dark hole, and this time of year just brings it all back. It still hurts.
On a good note though, this year, we get to have a Christmas. It may be without my daddy, who i miss so much, but it will be with a Jacob that will be home, with a little boy who can eat. I will make sure there is LOTS and LOTS and LOTS of food. I will make up for the 8 months he was not able to eat.
This year, It will be another memory. It will be Liam's first Christmas. It will be, a WONDERFUL CHRISTMAS. :)
No MRI results before January 6th. I was a little upset that they didn't book us in but not anymore. It will be a wonderful Christmas.
Happy Holidays to all and thank you "infiniment" for your support and your love.
Monday, November 23, 2009
Off to Disney!
Monday November 23rd, 2009
good evening everyone,
its been a while since my last update. Things have been good. Great actually. Jacob has spread his wings as wide as he possibly can.
Today was our three month MRI. I can't believe three months have gone by already. It seems like just yesterday we were getting the last results and getting comfortable. But here we are again, waiting with anticipation the results to see how the tumor is doing. It was a very emotional day for me today. I couldn't figure out why this one was so different from the others but as i sit here and write to you all, i figured it out. Its because my son has a brain tumor. Its because these MRIs are a constant reminder that my son was diagnosed with a brain tumor. My friend wrote on my wall this week about thinking of how "normal" our life will really ever be and she is right. Its something I always think about. We may be into a normal routine but our lives are far from ever being normal again. A life of MRIs, doctors, ct scans, IVIGs, chemo and radiation makes it a life that will ever be far from normal.
This week I am packing for our trip to Disney. We are SOOOOO excited. I can't think of a child who deserves this more than Jacob right now. Why are we going to Disney? because the Wish Foundation is granting my son with a terminally ill disease, any wish he wants. I love that we have this opportunity that we could never do on our own but when you think of the reason he is going, makes me sad.
I am afraid. I am afraid of losing my son. Some days I am grateful to still have Jacob in my life but some days, like today, I am afraid of losing him. The thoughts are just insane. You can't even imagine unless you are faced with it but I am honestly afraid. I am scared to hear those words one day from the doctors saying there is nothing else they can do. I will get over this feeling, i know I will, I always do...until the next MRI in three months.
The only way you can truly know how well Jacob is doing is by seeing him. He just lightens up ANY room he walks into. He is a gift. My gift. My birthday gift, my Christmas gift. He is my everything. Jacob and Liam are the reason I get up in the morning, i hope its never taken away from me.
I have decided not to get the results before our return from Disney. We are going to go and have a unforgettable time and make wonderful memories first. I can't wait to come and tell you all about it.
good evening everyone,
its been a while since my last update. Things have been good. Great actually. Jacob has spread his wings as wide as he possibly can.
Today was our three month MRI. I can't believe three months have gone by already. It seems like just yesterday we were getting the last results and getting comfortable. But here we are again, waiting with anticipation the results to see how the tumor is doing. It was a very emotional day for me today. I couldn't figure out why this one was so different from the others but as i sit here and write to you all, i figured it out. Its because my son has a brain tumor. Its because these MRIs are a constant reminder that my son was diagnosed with a brain tumor. My friend wrote on my wall this week about thinking of how "normal" our life will really ever be and she is right. Its something I always think about. We may be into a normal routine but our lives are far from ever being normal again. A life of MRIs, doctors, ct scans, IVIGs, chemo and radiation makes it a life that will ever be far from normal.
This week I am packing for our trip to Disney. We are SOOOOO excited. I can't think of a child who deserves this more than Jacob right now. Why are we going to Disney? because the Wish Foundation is granting my son with a terminally ill disease, any wish he wants. I love that we have this opportunity that we could never do on our own but when you think of the reason he is going, makes me sad.
I am afraid. I am afraid of losing my son. Some days I am grateful to still have Jacob in my life but some days, like today, I am afraid of losing him. The thoughts are just insane. You can't even imagine unless you are faced with it but I am honestly afraid. I am scared to hear those words one day from the doctors saying there is nothing else they can do. I will get over this feeling, i know I will, I always do...until the next MRI in three months.
The only way you can truly know how well Jacob is doing is by seeing him. He just lightens up ANY room he walks into. He is a gift. My gift. My birthday gift, my Christmas gift. He is my everything. Jacob and Liam are the reason I get up in the morning, i hope its never taken away from me.
I have decided not to get the results before our return from Disney. We are going to go and have a unforgettable time and make wonderful memories first. I can't wait to come and tell you all about it.
Thursday, October 22, 2009
Those Horrible Words
Thursday October 22nd, 2009
Two postings in two days...I guess I am making up for the lack of updates the last two months. lol
I had a need to sit and write to my most awesomest support group. I just came back from a little meeting with Jacobs teacher. I am sad. It really isn't that bad but my heart breaks right now and i can't stop crying. We were told by the teacher today that Jacob is struggling. Struggling and is not at the same level as the other chidren in his class. Although it was to be expected I was heartbroken to actually hear it. I am not sure how we went from a normal life with an above average child who exceeded in everything and was titled a genius to a boy who can barely zip up his coat without help. Its sad and for some reason as I sit here and watch the rain fall, it hit me again that - My child has cancer. My beautiful once upon a time healthy child, has cancer. OMG! its a slap in the face everytime i actually take the time to say it...those words, those horrible horrible words "My child has cancer". Wow, i can't stop saying it. I went from starting my day by sending Jacob to school and having a very nice coffee date with two great friends and now I am sitting here crying because my child needs help from other 6 year olds to zip up his coat. Its not fair. its just not fair. Today, i want to feel sorry for myself.
I am not taking anything away from Jacob. I think he is amazing to even be going to school right now and I admire him and respect him for his strenght and courage. The fact that we thought he wouldn't even be here with us today and he is in school as I write this is absolutely amazing to me...but i am angry. I am so angry. I just want to feel sorry for myself today. Just today, just right now. Tomorrow is another day.
Two postings in two days...I guess I am making up for the lack of updates the last two months. lol
I had a need to sit and write to my most awesomest support group. I just came back from a little meeting with Jacobs teacher. I am sad. It really isn't that bad but my heart breaks right now and i can't stop crying. We were told by the teacher today that Jacob is struggling. Struggling and is not at the same level as the other chidren in his class. Although it was to be expected I was heartbroken to actually hear it. I am not sure how we went from a normal life with an above average child who exceeded in everything and was titled a genius to a boy who can barely zip up his coat without help. Its sad and for some reason as I sit here and watch the rain fall, it hit me again that - My child has cancer. My beautiful once upon a time healthy child, has cancer. OMG! its a slap in the face everytime i actually take the time to say it...those words, those horrible horrible words "My child has cancer". Wow, i can't stop saying it. I went from starting my day by sending Jacob to school and having a very nice coffee date with two great friends and now I am sitting here crying because my child needs help from other 6 year olds to zip up his coat. Its not fair. its just not fair. Today, i want to feel sorry for myself.
I am not taking anything away from Jacob. I think he is amazing to even be going to school right now and I admire him and respect him for his strenght and courage. The fact that we thought he wouldn't even be here with us today and he is in school as I write this is absolutely amazing to me...but i am angry. I am so angry. I just want to feel sorry for myself today. Just today, just right now. Tomorrow is another day.
Tuesday, October 20, 2009
Carpe Diem
Tuesday October 20th, 2009
Wow! it sure has been a long time. Thank you to everyone who kept asking for updates. I needed time. I have been and still am grieving. Its also been well...BUSY in our household. I gotta tell you, it sure didn't take long for us to fall back into the "old" routine that I so longed for the last ten months. A bit too much actually. Some days I have to give myself a good shake when the little things bother me and upset as I had vowed that those things would no longer bug me. But I suppose that this is as normal as our lives are going to get so I shouldn't complain.
We are doing well. This is a very good time but also sad time for me. Jacob is doing extremely well. He is a boy again, actually, a 6 year old boy. We just celebrated Jacob's birthday and had you asked us 6 months ago if we even thought he would be here to celebrate with us, the answer would be truthfully...no.
But he is going to school. I think he is doing very well as his teacher always tells me so but today I got a call from the school wanting to talk about Jacob's behaviour. Not sure what all this is really about but I am anxious. Whatever it is, i dont really care. This is more than we thought Jacob could ever do so if he needs a bit more time to adjust....so be it!
Times have been also sad. I am having a really hard time with my father's death. I knew it would be hard but wow....some moments I just want to fall apart in somebody's arms...anyone who is willing to catch me. Some days I feel so alone with my grief. Jacob is also, surprisingly, having a hard time with jidou being gone. I don't think he truly got it until we go visit my mom and jidou is not on the couch...he is really gone. He has had a number of very overwhelming breakdowns. Jason and I have helped him through them but I am just not sure what to do at this point. He has so many questions. I don't want to hide anything from him. I think we need to get him some help in perhaps understanding more what has happened.
I miss him so much, i feel empty. It almost makes it worse that Jacob is doing so well, I want him to be here to see it. I want him to be here to see Liam's smile that can light up an entire room. But he is not.
I have lost the little bit of faith I had the last ten months. I so want to believe he is with us. I so want to believe in heaven. I have created this heaven in my head. A place with no sadness. A place with no pain, heartbreaks or tears. I imagine my father having a glass of scotch and a smoke and that nothing can hurt him anymore. I imagine him sitting there, looking down on us but not with sadness that he is not here anymore, but watching us with a subtle smile. That is what I hope heaven is like. I so need to believe it. I went to the cemetery with Liam today. I talked to him outloud. It felt weird at first but I so wanted to believe he could hear me that I had an entire conversation with him. Liam and I spoke to him, sang to him and cried for him. I cried. I cried alot....it felt SO good to just cry with nobody around.
Its hard. But life goes on. Life must go on. I must take care of my family. My children, my husband, my sisters, my nieces and my mother. My poor mother who has lost a person that she shared 47 years with. She is not well. I worry. I am sad for her. These were suppose to be good times.
But I am so happy to be able to tell you all that Jacob is doing fantastic. It really is a miracle. We are still working on his vision. His hearing is damaged now and we must work with what we have. He is walking, running, eating. He is happy. I enjoy every single moment I have with him. I can just sit there and stare at him all day. He amazes me every day...wether it is something he does or says or simply getting out of bed in the morning....he amazes me. I love him. I love him from the bottom of my heart. I love my children and I wouldn't change a thing. Next week we have an appt. with the wish foundation. I think these organizations are amazing! I think we are going to Disney. I want to give Jacob the time of his life. I want him to live like there's no tomorrow. Jacob got a personal invitation last week to a senators hockey practice and a game. He had a blast!!!! Those are the moments we will cherish...forever.
We have another MRI coming up in a few weeks. Oye! i can't believe we have to go through this every three months for the next two years. Every single one of them will be harder than the next but we live for the moment. Carpe Diem! Seize the day.
Thank you so much everyone for wanting updates. For asking. For checking everyday for one. I will never be able to say it enough....Thank you for all your support. Thank you!
Wow! it sure has been a long time. Thank you to everyone who kept asking for updates. I needed time. I have been and still am grieving. Its also been well...BUSY in our household. I gotta tell you, it sure didn't take long for us to fall back into the "old" routine that I so longed for the last ten months. A bit too much actually. Some days I have to give myself a good shake when the little things bother me and upset as I had vowed that those things would no longer bug me. But I suppose that this is as normal as our lives are going to get so I shouldn't complain.
We are doing well. This is a very good time but also sad time for me. Jacob is doing extremely well. He is a boy again, actually, a 6 year old boy. We just celebrated Jacob's birthday and had you asked us 6 months ago if we even thought he would be here to celebrate with us, the answer would be truthfully...no.
But he is going to school. I think he is doing very well as his teacher always tells me so but today I got a call from the school wanting to talk about Jacob's behaviour. Not sure what all this is really about but I am anxious. Whatever it is, i dont really care. This is more than we thought Jacob could ever do so if he needs a bit more time to adjust....so be it!
Times have been also sad. I am having a really hard time with my father's death. I knew it would be hard but wow....some moments I just want to fall apart in somebody's arms...anyone who is willing to catch me. Some days I feel so alone with my grief. Jacob is also, surprisingly, having a hard time with jidou being gone. I don't think he truly got it until we go visit my mom and jidou is not on the couch...he is really gone. He has had a number of very overwhelming breakdowns. Jason and I have helped him through them but I am just not sure what to do at this point. He has so many questions. I don't want to hide anything from him. I think we need to get him some help in perhaps understanding more what has happened.
I miss him so much, i feel empty. It almost makes it worse that Jacob is doing so well, I want him to be here to see it. I want him to be here to see Liam's smile that can light up an entire room. But he is not.
I have lost the little bit of faith I had the last ten months. I so want to believe he is with us. I so want to believe in heaven. I have created this heaven in my head. A place with no sadness. A place with no pain, heartbreaks or tears. I imagine my father having a glass of scotch and a smoke and that nothing can hurt him anymore. I imagine him sitting there, looking down on us but not with sadness that he is not here anymore, but watching us with a subtle smile. That is what I hope heaven is like. I so need to believe it. I went to the cemetery with Liam today. I talked to him outloud. It felt weird at first but I so wanted to believe he could hear me that I had an entire conversation with him. Liam and I spoke to him, sang to him and cried for him. I cried. I cried alot....it felt SO good to just cry with nobody around.
Its hard. But life goes on. Life must go on. I must take care of my family. My children, my husband, my sisters, my nieces and my mother. My poor mother who has lost a person that she shared 47 years with. She is not well. I worry. I am sad for her. These were suppose to be good times.
But I am so happy to be able to tell you all that Jacob is doing fantastic. It really is a miracle. We are still working on his vision. His hearing is damaged now and we must work with what we have. He is walking, running, eating. He is happy. I enjoy every single moment I have with him. I can just sit there and stare at him all day. He amazes me every day...wether it is something he does or says or simply getting out of bed in the morning....he amazes me. I love him. I love him from the bottom of my heart. I love my children and I wouldn't change a thing. Next week we have an appt. with the wish foundation. I think these organizations are amazing! I think we are going to Disney. I want to give Jacob the time of his life. I want him to live like there's no tomorrow. Jacob got a personal invitation last week to a senators hockey practice and a game. He had a blast!!!! Those are the moments we will cherish...forever.
We have another MRI coming up in a few weeks. Oye! i can't believe we have to go through this every three months for the next two years. Every single one of them will be harder than the next but we live for the moment. Carpe Diem! Seize the day.
Thank you so much everyone for wanting updates. For asking. For checking everyday for one. I will never be able to say it enough....Thank you for all your support. Thank you!
Wednesday, September 2, 2009
With Love, We Brought Him Back to Health!
Wednesday September 2nd, 2009
WITH LOVE, WE BROUGHT HIM BACK TO HEALT
I am at a loss for words as I start this journal tonight. I am beside myself with happiness, with relief and with great sadness. I have NEVER felt this overwhelmed since starting this journey 10 months ago TODAY.
Today, as most of you know, we got some news that we weren't quite expecting. As we walked in to the doctor's office, it was in that very same room 10 months ago that we were given the devastating news, news that would change our lives...forever. Today, we were told that there was no more signs of cancer. The tumor is still there but inactive and all dead cells. Words, we were not expecting but were overjoyed beyond any words could ever express to hear. Jacob did not quite understand why mommy was crying, but was quickly reassured they were tears of joy.
I don't think the news has quite sunk in yet. I am not sure if it ever will. I am not sure how to feel. I am overjoyed but at the same time I cried, I cried for my daddy, for Jacob's jidou who I so wish could be here to share this news with. But on the other hand, many believed and now I join them, that he unselfishly took Jacob's cancer with him to his grave. Thank you Baba, if you did, I am truly grateful but so sad that it cost you your life. I miss you terribly. I miss you so badly daddy that it hurts my insides. Jacob misses you. Jacob feels your absence and sees you in his dreams.
Today, we got good news, great news actually but at the same time we have learned of a little friend's passing. The same mother I cried with over Jacob and how sick Jacob was, has said goodbye to her angel. Jason and I are so deeply saddened by his death. He was 7 years old and a beautiful beautiful child. We did not tell Jacob, nor will we. We feel its just not the time. I just don't understand.
So, for now, we live to see another day with our beautiful hero. He will live on to go to school, to play, to eat, to drive me crazy at times...lol and live to his 6th birthday shortly. Life is beautiful. Although his health will forever be on our minds, his health will ALWAYS be in question and we will ALWAYS wonder if it will come back. There will still be an MRI scheduled every three months for the next two years. Every one of them will make my heart race...but until then....JACOB IS CANCER FREE.
This journey will continue, continue with more strength then we had before. I wish you all knew how much Jason and I have laughed, cried and cried some more reading your messages, your words of kindness, your words of encouragements, your prayers, your hope...your support. I don't know what we would have done without all of you holding our hand from afar as we cried so many, many tears. Thank you. Thank you. Thank you.
Liam is doing wonderfully. I never thought I could find enough love for him when Jacob got sick but boy did I quickly realize that I have plenty to go around. He is a beautiful child. Full of love and smiles and knows that he and his brother have a special bond. My family is a family again, and although life will never be the same, we are stonger than ever and are ready to face the world. I am a lucky woman. I count my blessings every day and hope you all never take your families, your parents, your sisters, your brothers, your friends and your children for granted. You only have one life to live...make the best of it.
I always wish this never happened but we have met some pretty amazing people on this road. I have made forever friends and for that I am thankful.
luv you all and thank you for your support. Liliane oxo
WITH LOVE, WE BROUGHT HIM BACK TO HEALT
I am at a loss for words as I start this journal tonight. I am beside myself with happiness, with relief and with great sadness. I have NEVER felt this overwhelmed since starting this journey 10 months ago TODAY.
Today, as most of you know, we got some news that we weren't quite expecting. As we walked in to the doctor's office, it was in that very same room 10 months ago that we were given the devastating news, news that would change our lives...forever. Today, we were told that there was no more signs of cancer. The tumor is still there but inactive and all dead cells. Words, we were not expecting but were overjoyed beyond any words could ever express to hear. Jacob did not quite understand why mommy was crying, but was quickly reassured they were tears of joy.
I don't think the news has quite sunk in yet. I am not sure if it ever will. I am not sure how to feel. I am overjoyed but at the same time I cried, I cried for my daddy, for Jacob's jidou who I so wish could be here to share this news with. But on the other hand, many believed and now I join them, that he unselfishly took Jacob's cancer with him to his grave. Thank you Baba, if you did, I am truly grateful but so sad that it cost you your life. I miss you terribly. I miss you so badly daddy that it hurts my insides. Jacob misses you. Jacob feels your absence and sees you in his dreams.
Today, we got good news, great news actually but at the same time we have learned of a little friend's passing. The same mother I cried with over Jacob and how sick Jacob was, has said goodbye to her angel. Jason and I are so deeply saddened by his death. He was 7 years old and a beautiful beautiful child. We did not tell Jacob, nor will we. We feel its just not the time. I just don't understand.
So, for now, we live to see another day with our beautiful hero. He will live on to go to school, to play, to eat, to drive me crazy at times...lol and live to his 6th birthday shortly. Life is beautiful. Although his health will forever be on our minds, his health will ALWAYS be in question and we will ALWAYS wonder if it will come back. There will still be an MRI scheduled every three months for the next two years. Every one of them will make my heart race...but until then....JACOB IS CANCER FREE.
This journey will continue, continue with more strength then we had before. I wish you all knew how much Jason and I have laughed, cried and cried some more reading your messages, your words of kindness, your words of encouragements, your prayers, your hope...your support. I don't know what we would have done without all of you holding our hand from afar as we cried so many, many tears. Thank you. Thank you. Thank you.
Liam is doing wonderfully. I never thought I could find enough love for him when Jacob got sick but boy did I quickly realize that I have plenty to go around. He is a beautiful child. Full of love and smiles and knows that he and his brother have a special bond. My family is a family again, and although life will never be the same, we are stonger than ever and are ready to face the world. I am a lucky woman. I count my blessings every day and hope you all never take your families, your parents, your sisters, your brothers, your friends and your children for granted. You only have one life to live...make the best of it.
I always wish this never happened but we have met some pretty amazing people on this road. I have made forever friends and for that I am thankful.
luv you all and thank you for your support. Liliane oxo
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