Like a Family

Thursday, March 19th, 2009

Hi Everyone, 

I always feel the need to start with a thank you to everyone who is following Jacob's days and for all the messages and support we get. You may not here back from us often but please know that we appreciate every message, quotes, encouragments, letters, cards we get. We truly feel blessed to have all of you take the time to read Jacob's Journey.

I haven't written in the last few days because we have had a bit of a rough time with Jacob. I didn't have energy to sit here and tell you all AGAIN that he wasn't doing well because i figured you may all be tired of reading the same thing...but then I figured this is what this journey is all about. Its about bad days and good days and well the reality right now for us is that most of our days are bad. 

Its been a really rough couple of days. Jason and I have had to sit by Jacob's side and watch him suffer in pain and not be able to do anything about it. Its been dose of morphine after dose after dose and all that for about a half hour relief at a time. He is not walking properly and and more nausous as ever.

The MRI results came back fine. Everything is good with his spine which is a relief in a way but his leg issues are still a mystery now. We still have two sets of doctors, one who think its from the chemo drug and the other who thinks its not. But I suppose it doesn't matter anymore, now we need to focus on getting his legs back functioning like the vibrate 5 years old that he was just 5 months ago.

Tuesday was my night to stay. I completely lost it (AGAIN) I just can't handle seeing my baby suffer like that. I called Jason and just cried, tried to put in a few words but couldn't. So i suppose all he heard was the muffled sound of my voice. I told him i was done with all of this(AGAIN). I told him I just didn't want to do this anymore. I don't want to do this to him anymore. I dont want to go to Montreal for what is suppose to be more intense chemo than he already had. I don't want to explain to him that he will get even sicker now....all this so he can get better. I just don't want to do it anymore. I know i've said it so many time already but i just can't do this anymore....if I am this drained I can even imagine how Jacob is feeling. It is like being a family here on 4 north at CHEO even if we don't all know each other. A mother came to me the next day, had never really talked to her before and said "I am sorry to intrude but i noticed you on the phone yesterday and just wanted to know if you were ok". So we shared our stories. I realize, I am not the only one who feels this way. 

I am so tired.

Today is a better day. Thank you Martha the nurse who decided to go the extra mile to try and find relief for Jacob, the pain management team has now come up with a medication patch that so far seems to have relieved Jacob at this time. Today, he is up and talking and we just came back from the gym. So far he has not been in pain to the point where he is bedridden. so i can say today the sun is shining for a reason. He was very excited to hear from his little classmates. I had sent a letter to the school for the parents and his friends are writing to him. His face was priceless when I told him some had written to him. Although there was sadness in his eyes from just missing them, there was hapiness in his heart to know they will be coming soon.

Jacob, I know you are fed up baby. No one can imagine how you are feeling. It breaks mommy and daddy's heart when you say "I can't take this anymore" and it breaks our hearts when you are so sick you hit your bed with your fists out of pure desperation to want your pain to go away. Just please try and remember that we are by your side....ALWAYS.