Wednesday July 29th, 2009
Hello All,
Well today was a big day in Jacob's Journey. Jacob had his central line removed. It was a bitter sweet feeling for mama to be honest. Jacob is not in remission at this time therefore Jacob's broviac removal means two things:
First, it means that Jacob is done treatments. It means, he survived 8 months of hell. It means, he went through three horrible cycles of chemo, 30 radiation treatments, a stem cell transplant and 9 surgeries. It means, he went through three episodes of pneumonia, it means, he almost "went to the light" a couple of times but miraculously somehow surpassed it. It is a big day for us, today, means Jacob is at home.
Second, this broviac removal means that this is it. This is really it. There is nothing else they can do for Jacob anymore and all we can do now is hope that he stays stable and the tumor no longer grows. What are the chances? nobody knows. Really, nobody knows. It will be a waiting game, it will be a life of stress, it will be a life of wondering if the next MRI will tell us that Jacob's tumor grew and there is no longer anything they can do for him...its a life of the unknown.
But, that's ok. Today, I wasn't emotional. I didn't cry. Today, I am happy. Today, I kissed and hugged my children more than i ever have. I kissed them so much they must have an imprint of my lips by now.
This only means now that we must enjoy every moment we have with Jacob. It just means that we have to make the best of every moment, do everything we have always wanted to do but always said tomorrow. It means, everytime Jacob says "can you play with me" we don't say, later.
We have come a long way from the begining of this journey. We are in the best time of our lives that we will ever be.
It was a good week this week. I have connected with a person that I know will be forever in our lives (no really, i mean forever...she is stalking me)! LOL LOL We have a great support system and wonderful people who genuinely care for us. I have my entire family together again under the same roof. These are good times.
I realize that i probably said the word TODAY about 20 times in this entry....but TODAY is all we have.
Wednesday, July 29, 2009
Tuesday, July 21, 2009
All We Have is Today
Tuesday July 21st, 2009
Tonight, I am happy. I am not sad, I am not stressed. I am not nervous. I am not scared. I am simply happy. Tonight, I am not angry at the world. I am not asking why this happened to us. I am simply happy.
Jacob has surpassed any expectations we had once again. Next week, Jacob will have already reached his goal. Instead of 8 weeks, in 4 weeks Jacob has managed to reach his goal of the HAPPY MEAL he has so been longing for. Who would have ever thought that I would be in tears knowing my son can have McDonald's. Today when I saw him put a star beside his last step before reaching his goal, I cried.
Amanda, I wish you had come and said hi. Somedays i sit and wonder how i can find a way to thank every single one of you for being there for us. For being our support system. But there is just no way i can, i can only hope that you all know and if i ever had the honor of meeting you all i would give you a big hug and hope that you would feel the love.
Funny cause that day you saw me at Walmart, i arrived happy but as I walked through the doors this mother and what I am assuming was her daughter made a crude comment as I walked in with Jacob in his wheelchair and his best friend Patrick. I was so upset i just wanted to cry and then wondered why the hell would I even freakin' care what this person thought. I was so mad at myself for caring even it was for just one moment. I realized after that i got upset because it made me remember that once upon a time i had a child who didn't stand out, a child who was just like any other kid....well besides being smarter and cuter and perfect ...lol lol was just like any other kid. I was going to say something to her but as I walked away and my two boys were laughing and joking, i stopped caring.
It doesn't matter anymore what the future holds for us. I don't even think of the future, we don't have a future, we dont' even have a past anymore. All we have is today and I will enjoy all the time I have left with my entire family, after all, none of us know when our time is up.
We are having Jacob's welcome home party on August 8th. I hope you all can join us. Please email me if you would like more info. lhajjar@uottawa.ca
Tonight, I am happy. I am not sad, I am not stressed. I am not nervous. I am not scared. I am simply happy. Tonight, I am not angry at the world. I am not asking why this happened to us. I am simply happy.
Jacob has surpassed any expectations we had once again. Next week, Jacob will have already reached his goal. Instead of 8 weeks, in 4 weeks Jacob has managed to reach his goal of the HAPPY MEAL he has so been longing for. Who would have ever thought that I would be in tears knowing my son can have McDonald's. Today when I saw him put a star beside his last step before reaching his goal, I cried.
Amanda, I wish you had come and said hi. Somedays i sit and wonder how i can find a way to thank every single one of you for being there for us. For being our support system. But there is just no way i can, i can only hope that you all know and if i ever had the honor of meeting you all i would give you a big hug and hope that you would feel the love.
Funny cause that day you saw me at Walmart, i arrived happy but as I walked through the doors this mother and what I am assuming was her daughter made a crude comment as I walked in with Jacob in his wheelchair and his best friend Patrick. I was so upset i just wanted to cry and then wondered why the hell would I even freakin' care what this person thought. I was so mad at myself for caring even it was for just one moment. I realized after that i got upset because it made me remember that once upon a time i had a child who didn't stand out, a child who was just like any other kid....well besides being smarter and cuter and perfect ...lol lol was just like any other kid. I was going to say something to her but as I walked away and my two boys were laughing and joking, i stopped caring.
It doesn't matter anymore what the future holds for us. I don't even think of the future, we don't have a future, we dont' even have a past anymore. All we have is today and I will enjoy all the time I have left with my entire family, after all, none of us know when our time is up.
We are having Jacob's welcome home party on August 8th. I hope you all can join us. Please email me if you would like more info. lhajjar@uottawa.ca
Sunday, July 12, 2009
Tears of Happiness
Sunday July 12th, 2009
Good evening to the best support group ever!!!
Hope you are all well. Here, in the Hajjar-Randell household, things couldn't be better! It brings me such hapiness and relief to sit here tonight and write good thoughts. Happy thoughts. Jacob is doing well. He has started eating. Not full meals and eating in very little bites so its not fufilling for him but he is on the right path. He is working very hard to walk again and eat again and try and correct all the damage that was done to his little body. Jason and I couldn't be prouder of that little boy. He is truly an inspiring to all. He is the poster boy for courage and strenght. Truly is.
I am not sure where to start, today was the best day in a long time. He is so happy and playful and talkative and gentle and polite and loving and emotional and well... alot of things.
Tonight, mama is happy. I am shedding tears as I write this but they are truly tears of hapiness, of joy, of relief. Jacob is on the right path of recovery. I cannot put into words how content Jason and I are that we brought him home. Its the best medicine we could have ever given him.
He is still sick. He seems more frustrated and discouraged now because everything else is going to well he doesn't understand why he still is vomiting. we don't understand either. The moments that he is sick he often says "this isn't suppose to be like this", "why is this happening to me" I fear at times that that is the life that he is destined to. I fear that this is his life for the rest of his days but hopefully there will be a miracle somehow and it will just go away. Our next MRI is scheduled for August 26th. That will be a big one. If the tumor is stable or shrunk it will be a great relief, if it has grown then we know in our hearts where we are heading and will make the best of his life. Until then, we will enjoy the time we have, we will enjoy every good day and take the bad ones with a grain of salt. The future no longer scares me...Today is what we have. Please keep us in your thoughts as you all always have.
Liam is great!!! he is almost 16lbs! yes you read right....at 2 1/2 months he is almost 16lbs. He is a wonderful baby that brings smiles to all of us. He eats well, sleeps through the night and is a gift to this family. Liam has a purpose in life just as I believe Jacob has also.
Jason is good. he is as always a strong beautiful person. He is a gifted dad. he was meant to be a father. He was meant to be a husband and I am grateful to have him.
Our days are busy. appts almost everyday. Jacob gets his broviac taken out next week(central line) which means he will be able to swim even with his feeding tube. It is a minor surgery but still a surgery that makes me nervous but I know he is in good hands.
oh i guess I can't forget lollipop. Lollipop is good. She is easily trained and I am SLOWLY getting used to her even though at times I get frustrated for having like another child in the house.
Thank you all. For those who we know and for the ones we have never met. Thank you!! oxoxoxo
Good evening to the best support group ever!!!
Hope you are all well. Here, in the Hajjar-Randell household, things couldn't be better! It brings me such hapiness and relief to sit here tonight and write good thoughts. Happy thoughts. Jacob is doing well. He has started eating. Not full meals and eating in very little bites so its not fufilling for him but he is on the right path. He is working very hard to walk again and eat again and try and correct all the damage that was done to his little body. Jason and I couldn't be prouder of that little boy. He is truly an inspiring to all. He is the poster boy for courage and strenght. Truly is.
I am not sure where to start, today was the best day in a long time. He is so happy and playful and talkative and gentle and polite and loving and emotional and well... alot of things.
Tonight, mama is happy. I am shedding tears as I write this but they are truly tears of hapiness, of joy, of relief. Jacob is on the right path of recovery. I cannot put into words how content Jason and I are that we brought him home. Its the best medicine we could have ever given him.
He is still sick. He seems more frustrated and discouraged now because everything else is going to well he doesn't understand why he still is vomiting. we don't understand either. The moments that he is sick he often says "this isn't suppose to be like this", "why is this happening to me" I fear at times that that is the life that he is destined to. I fear that this is his life for the rest of his days but hopefully there will be a miracle somehow and it will just go away. Our next MRI is scheduled for August 26th. That will be a big one. If the tumor is stable or shrunk it will be a great relief, if it has grown then we know in our hearts where we are heading and will make the best of his life. Until then, we will enjoy the time we have, we will enjoy every good day and take the bad ones with a grain of salt. The future no longer scares me...Today is what we have. Please keep us in your thoughts as you all always have.
Liam is great!!! he is almost 16lbs! yes you read right....at 2 1/2 months he is almost 16lbs. He is a wonderful baby that brings smiles to all of us. He eats well, sleeps through the night and is a gift to this family. Liam has a purpose in life just as I believe Jacob has also.
Jason is good. he is as always a strong beautiful person. He is a gifted dad. he was meant to be a father. He was meant to be a husband and I am grateful to have him.
Our days are busy. appts almost everyday. Jacob gets his broviac taken out next week(central line) which means he will be able to swim even with his feeding tube. It is a minor surgery but still a surgery that makes me nervous but I know he is in good hands.
oh i guess I can't forget lollipop. Lollipop is good. She is easily trained and I am SLOWLY getting used to her even though at times I get frustrated for having like another child in the house.
Thank you all. For those who we know and for the ones we have never met. Thank you!! oxoxoxo
Wednesday, July 1, 2009
It's a New Life
Wednesday, July 1st 2009
Happy Canada Day Everyone,
Today was a sad day for us. A year ago today, Jacob was riding a bike in my parent's driveway. We were having our tradionnal Canada Day BBQ. This year, my father can barely stand up without any help. He is frail and weak and it was also three years ago on this day that he started feeling ill. Jacob is still not able to eat so having a BBQ is out of the plans and it just wasn't the same.
its funny i got an email from an old friend who said i hope you are adjusting to your new life at home. I had never really thought of it that way but Chloe you are right. it is a new life. As much as i so badly wanted to come home and be a "normal" family again like we used to be i've realized its not going to happen. It is a new life we are beginning. Our past one does no longer exist. Things will never be the same. ever. Jacob has changed, he has become a new person and so have we. We are adjusting to our new life. A life of doctors, medications, mri's, appts, worrying and enjoying every moment we have together. so my dream of things being the way they were will never happen but i have no choice but to embrace this life that has now been given to us.
Jacob is doing well. He is still having a hard time with nausea and vomitting and well I wonder sometimes if this is the life that is ahead for him, a life of unexplained vomiting. is this the life he will have to adjust to or will it some day miraculously go away?
He is doing well, he is back to singing in the car when we drive....bopping his head to the music. He is more playful at times then he ever was. We are close, i feel it, we are closer to getting him better. We are extremely busy with appts. almost every day but that's ok. we keep saying its so nice to come home at the end of the day so will deal with it. Jacob had another hearing test. He definetely has permanent hearing loss but we are hoping it is manageable. I was really upset on monday when i realized that the last cycle in Montreal is what did it. For a moment i was angry at myself, at Jason for making us go to Montreal and damaging this child that had a chance. I was mad at opthamology for letting his eye go bad like they did. I was, once again, mad at the world. But it didn't last very long. I sucked it up as I always do and moved on. I am seriously still thinking of pursuing the eye clinic at CHEO. I am seriously considering filing an official complaint and suing. I feel this need to punish the people who damaged my child. I feel I owe it to Jacob. I owe him at least to punish the ones who should have taken better care of him but instead won't OWN UP to their mistake. Had they from the start owned up to their neglect. I wouldn't be so angry.
Liam is wonderful. He is a beautiful growing boy. no really, when i say growing...i mean growing...i think he is almost 15 pounds!!! lol I can't believe how chubby he is and I LOVE IT!!!! He is so playful and laughing all the time, it brings so much joy and laughter in this house.
Jason's mom is visiting from Newfoundland, Jason is happy to have his mommy here. I took her to play bingo last night! lol Tonight she is out with Jason at the Casino. Its nice for Jason and I to be able to go out, i hope someday we can go out together...i wonder sometimes if we ever will again... but really i don't care if we never leave this house again. I wanted the chance to be home again with my family and I am...what more can I ask for?
Hope all of you are well and again thank you all for your support.
Happy Canada Day Everyone,
Today was a sad day for us. A year ago today, Jacob was riding a bike in my parent's driveway. We were having our tradionnal Canada Day BBQ. This year, my father can barely stand up without any help. He is frail and weak and it was also three years ago on this day that he started feeling ill. Jacob is still not able to eat so having a BBQ is out of the plans and it just wasn't the same.
its funny i got an email from an old friend who said i hope you are adjusting to your new life at home. I had never really thought of it that way but Chloe you are right. it is a new life. As much as i so badly wanted to come home and be a "normal" family again like we used to be i've realized its not going to happen. It is a new life we are beginning. Our past one does no longer exist. Things will never be the same. ever. Jacob has changed, he has become a new person and so have we. We are adjusting to our new life. A life of doctors, medications, mri's, appts, worrying and enjoying every moment we have together. so my dream of things being the way they were will never happen but i have no choice but to embrace this life that has now been given to us.
Jacob is doing well. He is still having a hard time with nausea and vomitting and well I wonder sometimes if this is the life that is ahead for him, a life of unexplained vomiting. is this the life he will have to adjust to or will it some day miraculously go away?
He is doing well, he is back to singing in the car when we drive....bopping his head to the music. He is more playful at times then he ever was. We are close, i feel it, we are closer to getting him better. We are extremely busy with appts. almost every day but that's ok. we keep saying its so nice to come home at the end of the day so will deal with it. Jacob had another hearing test. He definetely has permanent hearing loss but we are hoping it is manageable. I was really upset on monday when i realized that the last cycle in Montreal is what did it. For a moment i was angry at myself, at Jason for making us go to Montreal and damaging this child that had a chance. I was mad at opthamology for letting his eye go bad like they did. I was, once again, mad at the world. But it didn't last very long. I sucked it up as I always do and moved on. I am seriously still thinking of pursuing the eye clinic at CHEO. I am seriously considering filing an official complaint and suing. I feel this need to punish the people who damaged my child. I feel I owe it to Jacob. I owe him at least to punish the ones who should have taken better care of him but instead won't OWN UP to their mistake. Had they from the start owned up to their neglect. I wouldn't be so angry.
Liam is wonderful. He is a beautiful growing boy. no really, when i say growing...i mean growing...i think he is almost 15 pounds!!! lol I can't believe how chubby he is and I LOVE IT!!!! He is so playful and laughing all the time, it brings so much joy and laughter in this house.
Jason's mom is visiting from Newfoundland, Jason is happy to have his mommy here. I took her to play bingo last night! lol Tonight she is out with Jason at the Casino. Its nice for Jason and I to be able to go out, i hope someday we can go out together...i wonder sometimes if we ever will again... but really i don't care if we never leave this house again. I wanted the chance to be home again with my family and I am...what more can I ask for?
Hope all of you are well and again thank you all for your support.
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