Saturday February 28th, 2009.
Thank you so much everyone for your support. We read jacob all the messages letting him know how proud everyone is of him.
Last night was once again a horrible night but i sucked it up and did what i had to do and held Jacob's in my arms as he threw up ALL night. maybe every 10 minutes or so. He was exhausted and so tired and he just wanted to sleep but his sick little body just wouldn't let him. drug after drug after drug was given to him all night and no affect. His blood pressure is through the roof and no relief in sight. At 2am, the nurses came in our room and flipped the room completely around and made a bed for me literally beside Jacob so i wouldn't have to get up every 5 minutes because that's how often he was sick. i am telling you this because its important for all to know how wonderful these nurses are that are by our side day after day. Thank you Chantal and Mel for being there last night. Its comforting for me to know that someone is holding my hand while I hold Jacob's.
i am happy to report that he is feeling a little bit better. He has not thrown up since noon today. He is feeling very nauseous but at least he was able to settle a bit and get out of bed today. We hope this is a turn around.
Daddy is with our little man tonight, i hope they have a goodnight. they have to or I just don't know what we are going to do.
Saturday, February 28, 2009
Friday, February 27, 2009
Courage
Friday, february 27th, 2009.
I guess I was wrong, I wasn't out of tears.
Daddy and Jacob had a very rough night last night. Jacob was up vomitting all night. They got no sleep and they are exhausted.
This morning Jason made the decision to not have Jacob sedated for radiation. Which means he may have missed a treatment. You can't possibly imagine how relieved I was when Jason told me he made that decision. So the team decided to have Jacob go to the General and try it without sedation. We all assumed he wouldn't do it, as before, he was overwhelmed, scared and being bolted to a table is not easy. And feeling the way he was we figured he would just miss a treatment today. Well....HE DID IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I don't know how and why but he did. I think he really is aware that he is very sick right now because of the drugs that perhaps he just decided that it was enough!
He was very scared but he did it and there are NO words to express how proud Jason and I were of him today. there are just no words but if you could see the look on our face you would all comprehend how proud we are of him. We can't seem to tell him enough.
So we are hoping that he keeps this routine and hopefully he will start feeling better soon.
Jacob continued to be sick ALL day today and is still very sick. I think its going to be another very long night for my little guy.
I guess I was wrong, I wasn't out of tears.
Daddy and Jacob had a very rough night last night. Jacob was up vomitting all night. They got no sleep and they are exhausted.
This morning Jason made the decision to not have Jacob sedated for radiation. Which means he may have missed a treatment. You can't possibly imagine how relieved I was when Jason told me he made that decision. So the team decided to have Jacob go to the General and try it without sedation. We all assumed he wouldn't do it, as before, he was overwhelmed, scared and being bolted to a table is not easy. And feeling the way he was we figured he would just miss a treatment today. Well....HE DID IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I don't know how and why but he did. I think he really is aware that he is very sick right now because of the drugs that perhaps he just decided that it was enough!
He was very scared but he did it and there are NO words to express how proud Jason and I were of him today. there are just no words but if you could see the look on our face you would all comprehend how proud we are of him. We can't seem to tell him enough.
So we are hoping that he keeps this routine and hopefully he will start feeling better soon.
Jacob continued to be sick ALL day today and is still very sick. I think its going to be another very long night for my little guy.
Thursday, February 26, 2009
Out of Tears
Thursday, February 26h, 2009
Today Jacob is very sick. Still vomitting. we have been up since 4am. I think that its mostly brought on by the general anasthetic he is getting for his radiation therapy. We are hoping that he will realize that and decide to do the radiation without sedation but it may take some time to convince him of that.
He has literally been vomitting ALL day and the nurse has exhausted everything they possibly can give him for nausea and vomitting.
He had a sleep study done last night and although we knew his sleeping patterns were not good, it was worse then we thought. The respirologist came in and the words out of their mouths were "we have a problem"...now you know thats not good! Apparentely there are bigger issues than we thought. We are hoping its only temporary and that it wil eventually fix itself but in the meantime we now know that Jacob doesn't breath much during his sleep. Especially when he dreams we were told. So just having oxygen at night was just masking the real problem. So now we add another complication to the many already existing ones. we are no closer to going home, if anything futher away now.
I don't understand what I am suppose to have faith in anymore? who am I suppose to be praying to because no one is listening. Why is this happening? Why is it that everything is an issue? Why can't this child have one thing go well for him? He doesnt deserve this. He doesn't deserve this pain and suffering and its just not fair. I just want our old life back. I want the old routine of taking Jacob to school, going to work, coming home, being able to feed my child, give him a bath and start all over in the morning. Thats all I want. I don't want the big house, the fancy cars, lots of money, I just want my our simple life back.
I can tell in his eyes he is tired of being sick. i see it more and more every day and it scares me. I can see the despair in his eyes after he has been vomitting for hours and just doesnt understand why he is so sick or when he looks at me with a look that says "mommy, why are you letting this happen, why can't you make it go away?" He keeps asking why is he so sick, he told me today he wishes he could be like he was before coming to CHEO. You wonder sometimes if it was even worth putting him through all of this when before he was a perfectly health happy boy.
will things ever get better? i cried so much today. i am out of tears tonight.
Today Jacob is very sick. Still vomitting. we have been up since 4am. I think that its mostly brought on by the general anasthetic he is getting for his radiation therapy. We are hoping that he will realize that and decide to do the radiation without sedation but it may take some time to convince him of that.
He has literally been vomitting ALL day and the nurse has exhausted everything they possibly can give him for nausea and vomitting.
He had a sleep study done last night and although we knew his sleeping patterns were not good, it was worse then we thought. The respirologist came in and the words out of their mouths were "we have a problem"...now you know thats not good! Apparentely there are bigger issues than we thought. We are hoping its only temporary and that it wil eventually fix itself but in the meantime we now know that Jacob doesn't breath much during his sleep. Especially when he dreams we were told. So just having oxygen at night was just masking the real problem. So now we add another complication to the many already existing ones. we are no closer to going home, if anything futher away now.
I don't understand what I am suppose to have faith in anymore? who am I suppose to be praying to because no one is listening. Why is this happening? Why is it that everything is an issue? Why can't this child have one thing go well for him? He doesnt deserve this. He doesn't deserve this pain and suffering and its just not fair. I just want our old life back. I want the old routine of taking Jacob to school, going to work, coming home, being able to feed my child, give him a bath and start all over in the morning. Thats all I want. I don't want the big house, the fancy cars, lots of money, I just want my our simple life back.
I can tell in his eyes he is tired of being sick. i see it more and more every day and it scares me. I can see the despair in his eyes after he has been vomitting for hours and just doesnt understand why he is so sick or when he looks at me with a look that says "mommy, why are you letting this happen, why can't you make it go away?" He keeps asking why is he so sick, he told me today he wishes he could be like he was before coming to CHEO. You wonder sometimes if it was even worth putting him through all of this when before he was a perfectly health happy boy.
will things ever get better? i cried so much today. i am out of tears tonight.
Tuesday, February 24, 2009
Without You, I am Nothing
Tuesday, February 24rd, 2009
Tonight I feel burnt out. Today for some reason I felt more helpless than I ever have since the day Jacob got sick. We had a couple of goodnight and not so bad days. Daddy is back tonight and at the hospital tonight and I was just told that Jacob was vomitting again. I just don't get why he is not getting better. Today, i am scared. i am scared for the future, I am scared for what tomorrow will bring.
Today i was frustrated with ophtamology. Our child may be going blind and all because of doctors lack of competence. I have started procedures to file an official complaint. I am done waiting around. i am done being ignored. i am doing something before its too late and my son goes blind from one eye. I am angry today. i am sad. i just want to scream so loud that it echos throughout the world.
Jacob started radiation therapy today, it didn't go as planned because he got scared. i don't blame him. he asked me if i was mad at him when we got back to room. How could I be???? How could I be mad at the bravest 5 year old I have ever seen that has gone through three and a half months in a hospital bed without seeing his home? How could I be mad at a child who has the courage to face the world every day, day after day, sick and confused and not being able to eat or drink or know if he ever will again? I can't. Tomorrow is a new day and we will once again face it as a family. If he can't do it, this will mean he will have to be put to sleep every day for 30 treatments which means no closer to going home. I wish he could understand that but he is braver than i could ever be so all we can do is praise him for the efforts he's made.
Daddy, I hope you and peanut have a goodnight. you both will be the last people I think of when i close my eyes and the first when i open them. there are absolutely no words to describe the intensity of my love for you both. Without the two of you, I am nothing.
Tonight I feel burnt out. Today for some reason I felt more helpless than I ever have since the day Jacob got sick. We had a couple of goodnight and not so bad days. Daddy is back tonight and at the hospital tonight and I was just told that Jacob was vomitting again. I just don't get why he is not getting better. Today, i am scared. i am scared for the future, I am scared for what tomorrow will bring.
Today i was frustrated with ophtamology. Our child may be going blind and all because of doctors lack of competence. I have started procedures to file an official complaint. I am done waiting around. i am done being ignored. i am doing something before its too late and my son goes blind from one eye. I am angry today. i am sad. i just want to scream so loud that it echos throughout the world.
Jacob started radiation therapy today, it didn't go as planned because he got scared. i don't blame him. he asked me if i was mad at him when we got back to room. How could I be???? How could I be mad at the bravest 5 year old I have ever seen that has gone through three and a half months in a hospital bed without seeing his home? How could I be mad at a child who has the courage to face the world every day, day after day, sick and confused and not being able to eat or drink or know if he ever will again? I can't. Tomorrow is a new day and we will once again face it as a family. If he can't do it, this will mean he will have to be put to sleep every day for 30 treatments which means no closer to going home. I wish he could understand that but he is braver than i could ever be so all we can do is praise him for the efforts he's made.
Daddy, I hope you and peanut have a goodnight. you both will be the last people I think of when i close my eyes and the first when i open them. there are absolutely no words to describe the intensity of my love for you both. Without the two of you, I am nothing.
Monday, February 23, 2009
Jacob's World
Sunday, February 23rd 2009.
I am happy to say today was good day. Well, a good day for Jacob is not vomiting and not in so much discomfort that he needs morphine every two hours. So today was a good day. He was tired and weak but awake and talkative and we even went outside this evening for about 10 minutes for some fresh air. I love these days, days where we actually see light at the end of the tunnel. The complications are all still there but to see him like this is refreshing.
Jason and I actually got to go out for dinner. We were gone an hour but my sister sat with Jacob while we spent the entire time talking about how wonderful our son is...lol
Tonight I am doing another overnight. Nights scare me. They scare me to the point where I get little panic attacks and don't want to fall asleep. It seems he just gets so sick as soon as the lights turn off. But i am here ready to face another night with Jacob. Daddy is feeling under the weather. He is burning out and I can feel it but he never says anything. I can't afford to lose him, he is my rock, more importantly Jacob's world right now and without daddy we cannot get through this. I can't seem to say it enough but as bad as this situation is and as much as i wish we weren't going through it, i am glad Jason is the one I am going through it with. i am glad he is Jacob's father because if you all could only see them together and the look in each other's eyes......its what keeps me going.
here's to a goodnight tonight!!
And to all you have shed tears with me. I thank you. I thank you for feeling our pain, our fears and the love for our child. i thank you from the bottom of my broken heart.
I am happy to say today was good day. Well, a good day for Jacob is not vomiting and not in so much discomfort that he needs morphine every two hours. So today was a good day. He was tired and weak but awake and talkative and we even went outside this evening for about 10 minutes for some fresh air. I love these days, days where we actually see light at the end of the tunnel. The complications are all still there but to see him like this is refreshing.
Jason and I actually got to go out for dinner. We were gone an hour but my sister sat with Jacob while we spent the entire time talking about how wonderful our son is...lol
Tonight I am doing another overnight. Nights scare me. They scare me to the point where I get little panic attacks and don't want to fall asleep. It seems he just gets so sick as soon as the lights turn off. But i am here ready to face another night with Jacob. Daddy is feeling under the weather. He is burning out and I can feel it but he never says anything. I can't afford to lose him, he is my rock, more importantly Jacob's world right now and without daddy we cannot get through this. I can't seem to say it enough but as bad as this situation is and as much as i wish we weren't going through it, i am glad Jason is the one I am going through it with. i am glad he is Jacob's father because if you all could only see them together and the look in each other's eyes......its what keeps me going.
here's to a goodnight tonight!!
And to all you have shed tears with me. I thank you. I thank you for feeling our pain, our fears and the love for our child. i thank you from the bottom of my broken heart.
Saturday, February 21, 2009
Sing Me a Song
Saturday, February 21st, 2009
Today was not a great day for Jacob. not bad but not great. He is still vomiting and has these horrible pains in his tummy that he just can't quite seem to explain what kind of pain he is feeling. The doctor's don't seem to know what it is either. On monday there is this "big" meeting with many doctors to discuss Jacob. In a way you feel great about the fact that so many doctors are getting together to try and make him better, on the other hand, you wish it wasn't so complicated and a mystery as to why he is still so sick.
Everyone's goal right now seems to be the same. To try and stabilize him enough to be able to spend some time at home, especially before heading to Montreal.
Yesterday Jason and I had a very big decision to make. It seems like it was only big for us, many people on the outside didn't see our dilema but i guess you just can't understand until you are faced with the decision. When all this began there was only talk about radiation therapy to the focal area, meaning just where the tumor is. A couple of weeks we are all of a sudden faced with the possibility of having to radiate his entire brain and spine. i was completely against and Jason was in the fence. We didnt' see eye to eye on this and i had no idea how we would come to a decision. The results from the MRI that showed shrinkage was great news and the spinal tap showed degenerated cells. So the question is why would I radiate his entire brain with long term effects if there was no cancer. I know people don't get, i even got responses like "well don't you want him to get better?" and, "don't you want to do whats best for him?" No one out there better EVER doubt the love I have for my son or my intentions to want him better but they are huge decisions to make. We have his life and future in our hands and its a great responsibilty as parents.
We had a meeting with the doctor yesterday and things are much clearer now. As much as i am against it, the reality is that this is a very rare aggressive tumor and this is the only chance to attack it, we have one chance to get it, if it comes back, we are basically 'screwed'.
So Jacob starts radiation on tuesday to the entire brain and spine. Will we regret our decision? I guess only time will tell.
Jacob had a blah day today. Vomiting and tummy pains and he slept most of the day. He managed to find a bit of energy to take a shower and get his hair washed but that's it. He asked me to sing him a song i used to sing him when he was little, so i sucked back my tears cuddled in bed with him and while daddy held his hand, i sang to him...
Today I am grateful for another day with Jacob. As a grandmother who recently lost her 16 year old grand daughter to cancer said to me this week: Just hug him and kiss him and love him everyday.
I suggest you all do that. Don't take your children for ganted because the reality is , they may not always be around.
Today was not a great day for Jacob. not bad but not great. He is still vomiting and has these horrible pains in his tummy that he just can't quite seem to explain what kind of pain he is feeling. The doctor's don't seem to know what it is either. On monday there is this "big" meeting with many doctors to discuss Jacob. In a way you feel great about the fact that so many doctors are getting together to try and make him better, on the other hand, you wish it wasn't so complicated and a mystery as to why he is still so sick.
Everyone's goal right now seems to be the same. To try and stabilize him enough to be able to spend some time at home, especially before heading to Montreal.
Yesterday Jason and I had a very big decision to make. It seems like it was only big for us, many people on the outside didn't see our dilema but i guess you just can't understand until you are faced with the decision. When all this began there was only talk about radiation therapy to the focal area, meaning just where the tumor is. A couple of weeks we are all of a sudden faced with the possibility of having to radiate his entire brain and spine. i was completely against and Jason was in the fence. We didnt' see eye to eye on this and i had no idea how we would come to a decision. The results from the MRI that showed shrinkage was great news and the spinal tap showed degenerated cells. So the question is why would I radiate his entire brain with long term effects if there was no cancer. I know people don't get, i even got responses like "well don't you want him to get better?" and, "don't you want to do whats best for him?" No one out there better EVER doubt the love I have for my son or my intentions to want him better but they are huge decisions to make. We have his life and future in our hands and its a great responsibilty as parents.
We had a meeting with the doctor yesterday and things are much clearer now. As much as i am against it, the reality is that this is a very rare aggressive tumor and this is the only chance to attack it, we have one chance to get it, if it comes back, we are basically 'screwed'.
So Jacob starts radiation on tuesday to the entire brain and spine. Will we regret our decision? I guess only time will tell.
Jacob had a blah day today. Vomiting and tummy pains and he slept most of the day. He managed to find a bit of energy to take a shower and get his hair washed but that's it. He asked me to sing him a song i used to sing him when he was little, so i sucked back my tears cuddled in bed with him and while daddy held his hand, i sang to him...
Today I am grateful for another day with Jacob. As a grandmother who recently lost her 16 year old grand daughter to cancer said to me this week: Just hug him and kiss him and love him everyday.
I suggest you all do that. Don't take your children for ganted because the reality is , they may not always be around.
Wednesday, February 18, 2009
Courage and Comfort
Wednesday, February 18th, 2009
I want to thank everyone for their support after my last message. It was a tough night and thank you for letting me share. To take the time to acknowledge my pain is comforting. I am happy to say we had a fairly better night last night. Jacob is doing well. Trying to be as active as possible but his little body is quite frail but he sure is trying his best.
He starts radiation on the 24th. Every day for six weeks. He went for his fitting yesterday, and seeing your son bolted to a table is not the easiest thing to see.
Britany, i want to thank you for your words of encouragements for Jason, Jacob and I. I am honoured that you joined Jacob's group. We were so deeply sadden when we heard of Montana's passing. She was truly an inspiration to Jason and I . We saw her fight every day and I can only hope Jacob finds the inner spirit that Montana had. She was a picture of courage.
I want to thank everyone for their support after my last message. It was a tough night and thank you for letting me share. To take the time to acknowledge my pain is comforting. I am happy to say we had a fairly better night last night. Jacob is doing well. Trying to be as active as possible but his little body is quite frail but he sure is trying his best.
He starts radiation on the 24th. Every day for six weeks. He went for his fitting yesterday, and seeing your son bolted to a table is not the easiest thing to see.
Britany, i want to thank you for your words of encouragements for Jason, Jacob and I. I am honoured that you joined Jacob's group. We were so deeply sadden when we heard of Montana's passing. She was truly an inspiration to Jason and I . We saw her fight every day and I can only hope Jacob finds the inner spirit that Montana had. She was a picture of courage.
Monday, February 16, 2009
"Don't Cry, Mommy."
Monday, February 16th, 2009
Last night was a sad and horrible night for my little guy. One of the worse nights I have seen. Today I am overwhelmed with fatigue and sadness and frustration. I am angry at the world today. I am angry that all this is happening. I so badly want to take it away from Jacob. I want his little body to not be sick anymore, to not throw up anymore, to simply not have cancer.
For those who don't know, Jacob is no long able to swallow at this time due to the nerve damage he sustained during the very long brain surgery he had. He has not tasted food in over three months. He is no longer able to drink or eat and although we are hopeful it comes back some day, until then it may be months, maybe years? Yesterday, Jacob said to me, "mommy, my brain won't stop letting me think of food". And a tear came down his beautiful cheek. If my heart could have literally exploded in a million pieces, you all would have heard the bang and pieces would have been falling from the sky from here to the ends of the world.
We know he thinks of food all the time, but when he talks about it and is fully aware that he can't have his mcdonalds or simply a glass of water after he has been vomitting for hours, it just breaks your heart and sucks the life right out of you. Although i have to eat for survival, there is not one day in the last three months that i actually enjoyed a meal.
After that, he for some unknown reason was sick all night. I just can't do this anymore. Emotions were so overwhelming last night that when i was crying in the nurses arms, Jacob actually turned around to me and said..."its ok mommy, don't cry. its going to be ok". My 5 year old who is fighting for his life turns to me and comforted me instead of it being the other way around. I told him i was just sad of seeing him sick and i didn't want him to be sick anymore...he says "me either, i can't take this anymore". those were his last words to me before he fell asleep.
Last night was rough. Today, i don't know where we both found the energy to wake up, but we both did and he is up today fighting for another day.
i love you Jacob.
Last night was a sad and horrible night for my little guy. One of the worse nights I have seen. Today I am overwhelmed with fatigue and sadness and frustration. I am angry at the world today. I am angry that all this is happening. I so badly want to take it away from Jacob. I want his little body to not be sick anymore, to not throw up anymore, to simply not have cancer.
For those who don't know, Jacob is no long able to swallow at this time due to the nerve damage he sustained during the very long brain surgery he had. He has not tasted food in over three months. He is no longer able to drink or eat and although we are hopeful it comes back some day, until then it may be months, maybe years? Yesterday, Jacob said to me, "mommy, my brain won't stop letting me think of food". And a tear came down his beautiful cheek. If my heart could have literally exploded in a million pieces, you all would have heard the bang and pieces would have been falling from the sky from here to the ends of the world.
We know he thinks of food all the time, but when he talks about it and is fully aware that he can't have his mcdonalds or simply a glass of water after he has been vomitting for hours, it just breaks your heart and sucks the life right out of you. Although i have to eat for survival, there is not one day in the last three months that i actually enjoyed a meal.
After that, he for some unknown reason was sick all night. I just can't do this anymore. Emotions were so overwhelming last night that when i was crying in the nurses arms, Jacob actually turned around to me and said..."its ok mommy, don't cry. its going to be ok". My 5 year old who is fighting for his life turns to me and comforted me instead of it being the other way around. I told him i was just sad of seeing him sick and i didn't want him to be sick anymore...he says "me either, i can't take this anymore". those were his last words to me before he fell asleep.
Last night was rough. Today, i don't know where we both found the energy to wake up, but we both did and he is up today fighting for another day.
i love you Jacob.
Saturday, February 14, 2009
Valentine's Day
Saturday February 14th, 2009.
Happy Valentine's Everyone! It's so good to be back by Jacob's beside. I have been reluctant to write because i was afraid of jinxing our little streak but we are doing great. Jacob has had about three days in a row and we have been so happy. Not sure where he found his little burst of energy but its such a wonderful feeling.
Medically, he is still sick with still no answers but he has the entire hospital working on him. Every specialist are putting their heads tgether next week and try and fix him. They are concluding that perhaps all his problems are from central which basically means his brain is not telling him do to what its suppose to do.
We received results from the MRI but reluctant to share because we are still waiting for the very important spinal tap results. The MRI shows decreased residue which means the tumor has shrunk. Great news!! but the spinal tap will tell us if he has cancer cells in his spine, which we are still petrified about.
In the meantime, we are enjoying these good days we are having with Jacob.
jacob is to start radiation therapy next week. We are slowly preparing him for this next step of his journey.
Thank you all who wanted to know how we are doing!!
Happy Valentine's Everyone! It's so good to be back by Jacob's beside. I have been reluctant to write because i was afraid of jinxing our little streak but we are doing great. Jacob has had about three days in a row and we have been so happy. Not sure where he found his little burst of energy but its such a wonderful feeling.
Medically, he is still sick with still no answers but he has the entire hospital working on him. Every specialist are putting their heads tgether next week and try and fix him. They are concluding that perhaps all his problems are from central which basically means his brain is not telling him do to what its suppose to do.
We received results from the MRI but reluctant to share because we are still waiting for the very important spinal tap results. The MRI shows decreased residue which means the tumor has shrunk. Great news!! but the spinal tap will tell us if he has cancer cells in his spine, which we are still petrified about.
In the meantime, we are enjoying these good days we are having with Jacob.
jacob is to start radiation therapy next week. We are slowly preparing him for this next step of his journey.
Thank you all who wanted to know how we are doing!!
Tuesday, February 10, 2009
Beautiful Human Beings
Tuesday, February 10th, 2009
Hi Everyone, I'm back! Not in the greatest shape but i'm back. Been away for a few days with the stomach flu and it was the hardest thing to be away from my boys.
As you all know Jacob had a very busy yesterday. He had his MRI of his head and spine. He also had a broncoscopy, gi scope and spinal tap done. All these to try and figure out why my Jacob is still very sick and not getting better as he should. We have not yet received any results from any of the tests, we are on the edge of our seats waiting to see what the MRI will reveal. We also anxious about the spinal tap to see if there is cancer in his spine. Today he is recovering, he is very tired and nauseous but hopefully be better in a couple of days.
We will keep you updated on the results. Wish us luck!!!
Now i must go and catch up on all the messages you all have been leaving. Thank you all for your support.
I also just caught up on a colleague of mine who's son dedicated his wining hockey game to Jacob and cut his VERY long hair and donated it in honor of Jacob.
My God! what does one say to that? There are beautiful people out there!!!! You are all just beautiful human beings.
Hi Everyone, I'm back! Not in the greatest shape but i'm back. Been away for a few days with the stomach flu and it was the hardest thing to be away from my boys.
As you all know Jacob had a very busy yesterday. He had his MRI of his head and spine. He also had a broncoscopy, gi scope and spinal tap done. All these to try and figure out why my Jacob is still very sick and not getting better as he should. We have not yet received any results from any of the tests, we are on the edge of our seats waiting to see what the MRI will reveal. We also anxious about the spinal tap to see if there is cancer in his spine. Today he is recovering, he is very tired and nauseous but hopefully be better in a couple of days.
We will keep you updated on the results. Wish us luck!!!
Now i must go and catch up on all the messages you all have been leaving. Thank you all for your support.
I also just caught up on a colleague of mine who's son dedicated his wining hockey game to Jacob and cut his VERY long hair and donated it in honor of Jacob.
My God! what does one say to that? There are beautiful people out there!!!! You are all just beautiful human beings.
Sunday, February 8, 2009
Aunt Ali's Entry
Sunday night, February 8
Hello, this is Ali writing. I'm Jacob's aunt and Liliane's sister. I have taken the liberty to write in Jacob's journal as I know some of you have not heard any new updates in the last few days.
My sister Liliane fell ill this week with this virus going around but is doing much better. She had to stay home and take care of herself and my unborn nephew but was missing Jacob like crazy. Jason has been busy caring the little guy on his own this week. Both Liliane and Jason are incredible parents and refuse to leave Jacob's bedside.
On Monday morning, Jacob will be going in for his MRI so we all need to really pray and hope that the results are good and Jacob is truly on the road to recovery.
I spent a couple of hours at the hospital today and Jacob was talking about how worried he was because he was losing his french and we promised that he is so smart, he would remember it all very soon.
God bless his little soul. I love you baby boy more than life itself!!!
Hello, this is Ali writing. I'm Jacob's aunt and Liliane's sister. I have taken the liberty to write in Jacob's journal as I know some of you have not heard any new updates in the last few days.
My sister Liliane fell ill this week with this virus going around but is doing much better. She had to stay home and take care of herself and my unborn nephew but was missing Jacob like crazy. Jason has been busy caring the little guy on his own this week. Both Liliane and Jason are incredible parents and refuse to leave Jacob's bedside.
On Monday morning, Jacob will be going in for his MRI so we all need to really pray and hope that the results are good and Jacob is truly on the road to recovery.
I spent a couple of hours at the hospital today and Jacob was talking about how worried he was because he was losing his french and we promised that he is so smart, he would remember it all very soon.
God bless his little soul. I love you baby boy more than life itself!!!
Tuesday, February 3, 2009
Following Your Gut
Tuesday, February 3rd, 2009.
As I sit here and wipe my tears once again ...I have to start by saying that i cried so many tears today because we are just so taken back by all of you who care so much to want to know about Jacob.
Today, as parents, we "followed our gut" as you put Terry. That is the best advice a mother could ever give a mother. Your mother was a smart woman and I am sorry to hear she is no longer with you.
This morning, Jason and I made an executive decision to not go ahead with the MRI. The risks were too great and something was telling us that it just wasn't right. Last night we went to bed with heavy hearts but this morning we didn't even have to think about it. I don't think the doctors were too happy with our decision but it was as they say in french "plus fort que nous". Despite what the doctors said, we didn't think waiting a few more days would make that big of a difference. We are happy we waited and have no regrets.
Jacob gets another day to recover from pneumonia without us having taken the chance of making him sicker.
Tonight, i spent two hours in the playroom with Jacob. Then spent an hour playing wii in his room, kicking my sorry butt at every game we played..
Its 10:53pm now as I just watch my son fall alseep peacefully
As I sit here and wipe my tears once again ...I have to start by saying that i cried so many tears today because we are just so taken back by all of you who care so much to want to know about Jacob.
Today, as parents, we "followed our gut" as you put Terry. That is the best advice a mother could ever give a mother. Your mother was a smart woman and I am sorry to hear she is no longer with you.
This morning, Jason and I made an executive decision to not go ahead with the MRI. The risks were too great and something was telling us that it just wasn't right. Last night we went to bed with heavy hearts but this morning we didn't even have to think about it. I don't think the doctors were too happy with our decision but it was as they say in french "plus fort que nous". Despite what the doctors said, we didn't think waiting a few more days would make that big of a difference. We are happy we waited and have no regrets.
Jacob gets another day to recover from pneumonia without us having taken the chance of making him sicker.
Tonight, i spent two hours in the playroom with Jacob. Then spent an hour playing wii in his room, kicking my sorry butt at every game we played..
Its 10:53pm now as I just watch my son fall alseep peacefully
Monday, February 2, 2009
Three Months
Monday February 2nd, 2009.
Today is our third month anniversary at CHEO. It was a good morning. Jacob was up and walking around, it was good. Tonight however is a different story. It will be a sleepless night for Jason and I with yet another decision weighing on our hearts. Jacob is scheduled for an MRI tomorrow. First MRI since finding the tumor. This MRI is to determine what is left of the tumor. The problem is Jacob is fighting a pneumonia now. Third one since his initial surgery. Anesthesiologist came in to see us this evening to talk about the procedure and the "famous" risks that exist. The problem is that they are completely against putting him under for the MRI because they believe that the complications and risks are too great for Jacob and that he will end up in ICU needing help to breathe. On the other side, the oncologist team are adament about going ahead and don't want to postpone the procedure. So here we are, in between the ones who basically have Jacob's life in their hands monitoring his breathing and the doctors who think this MRI is that crucial that it is worth the risk. Who do you believe? what do we do? I am a mess this evening. I don't know what to do. I am tired of having to make these decisions so quickly, so suddenly, so under pressure. I just want my baby home.
This will be Jacob's 8th surgical procedure.
Today is our third month anniversary at CHEO. It was a good morning. Jacob was up and walking around, it was good. Tonight however is a different story. It will be a sleepless night for Jason and I with yet another decision weighing on our hearts. Jacob is scheduled for an MRI tomorrow. First MRI since finding the tumor. This MRI is to determine what is left of the tumor. The problem is Jacob is fighting a pneumonia now. Third one since his initial surgery. Anesthesiologist came in to see us this evening to talk about the procedure and the "famous" risks that exist. The problem is that they are completely against putting him under for the MRI because they believe that the complications and risks are too great for Jacob and that he will end up in ICU needing help to breathe. On the other side, the oncologist team are adament about going ahead and don't want to postpone the procedure. So here we are, in between the ones who basically have Jacob's life in their hands monitoring his breathing and the doctors who think this MRI is that crucial that it is worth the risk. Who do you believe? what do we do? I am a mess this evening. I don't know what to do. I am tired of having to make these decisions so quickly, so suddenly, so under pressure. I just want my baby home.
This will be Jacob's 8th surgical procedure.
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