Ryan,
I saw this saying by Lance Armstrong and liked it alot, so I thought I would put it in so you could read and see this one day.
If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.
We got more results today from last weeks fish test. You are still in remission. Yippppeeeee! Fighting like hell is how I take this result.
Funny, I feel wonderful and thrilled about the news, yet still sad in some ways. I can not help but watch and think of our future, what it holds, etc.
I know many people are probably thinking what am I saying here, but as your mother, I am thrilled about the news, but anxious about the next test and the one after that..It is always right there, staring me in the face.
Daddy told me last night, we have to deal with this for a very long time, and even you being in remission, do not mean that every couple of weeks we have to await these results. It is so hard and every day that we get closer to a result, I feel I get a little more freaked out and my days become harder and harder to deal with.
Ryan, I have had some bad days recently and I am hoping that I can get them under control!
I cry alot and watch you alot and take in every minute of every day with you.
We are trying to get back to a normal routine and Daddy and I have many things to figure out in the next couple of months.
Hopefully in a few months we can contract Children's wish foundation and let them know we are ready to go ahead with the trip to Disney. I know you will love it. Mommy just wants to make sure you are ready to go and that we do not do to much to soon.
I love you baby...
Mommy.
Monday, June 15, 2009
Wednesday, June 10, 2009
June 10th- Day + 123
Ryan ,
We went to SKH today for a check up!
Dr. Gassas was on vacation so mommy was a little upset that it has been so long since we have actually spoken to a Dr. I had a lot of questions and I asked the nurse if I could ask her the questions and if she could not answer then to refer me to a Dr. They were OK with this.
She examed you and said that she can not feel your spleen....this is good news.
She said you looked great, so we must be doing something right.
Chris took your blood and sent it away for the CBC, Bio Chem, results that we get with in an hour. Everything looks great! Your fish test has been sent out and we should have an answer on Monday. This will tell us if you are still holding all of your sister's cells....Crossing fingers....
We are allowed to take you to Montreal for a weekend as they have a transplant center at St. Justine's Hospital and should we run into any problems we can take you there....this is good Ryan we can go away for a few days and get away from our house....
If all stays 200/200 for the next couple of tests you can get your central line removed hopefully and go to school in September as per the hospital...Mommy and Daddy have decided to keep you out of school until January as precaution. Ryan there are just to many risks involved. Your immune system will not be back to full strengh and we do not want to take any chances.
You also may be able to go on your wish with Children's Wish in September or October depending on results and if your line is out. I know you want to go to Disney so bad...
We will get you there, Ryan.
Mommy is trying to get back to a normal schedule and will work out the details in the next few months....before I make any changes I need to see that you stay in remission for more than just one blood test..Maybe that is silly of me, but I want to make my decision based on the best information possible...and if you need me for a longer period of time, this is where I will be ...but if you continue to do well, it may be best for you to get back to your normal life with your friends and school, activities, etc.
Love ya lots,
Mommy
We went to SKH today for a check up!
Dr. Gassas was on vacation so mommy was a little upset that it has been so long since we have actually spoken to a Dr. I had a lot of questions and I asked the nurse if I could ask her the questions and if she could not answer then to refer me to a Dr. They were OK with this.
She examed you and said that she can not feel your spleen....this is good news.
She said you looked great, so we must be doing something right.
Chris took your blood and sent it away for the CBC, Bio Chem, results that we get with in an hour. Everything looks great! Your fish test has been sent out and we should have an answer on Monday. This will tell us if you are still holding all of your sister's cells....Crossing fingers....
We are allowed to take you to Montreal for a weekend as they have a transplant center at St. Justine's Hospital and should we run into any problems we can take you there....this is good Ryan we can go away for a few days and get away from our house....
If all stays 200/200 for the next couple of tests you can get your central line removed hopefully and go to school in September as per the hospital...Mommy and Daddy have decided to keep you out of school until January as precaution. Ryan there are just to many risks involved. Your immune system will not be back to full strengh and we do not want to take any chances.
You also may be able to go on your wish with Children's Wish in September or October depending on results and if your line is out. I know you want to go to Disney so bad...
We will get you there, Ryan.
Mommy is trying to get back to a normal schedule and will work out the details in the next few months....before I make any changes I need to see that you stay in remission for more than just one blood test..Maybe that is silly of me, but I want to make my decision based on the best information possible...and if you need me for a longer period of time, this is where I will be ...but if you continue to do well, it may be best for you to get back to your normal life with your friends and school, activities, etc.
Love ya lots,
Mommy
Tuesday, June 2, 2009
June 1st -Day + 115
Ryan,
So you Nana in Ireland called last night to tell us that your Uncle Phillip and Cousin David, went to the Gratto.....Many people have gone to this Grotto in Ireland and placed things about a person who needs to be healed. So they placed the dinosaur that you gave your Uncle Phillipo to remember you by when he was here and a scanned picture of you. Dave went back up to see it and from what I gathered from the conversation is that someone put candles to help heal there loved one and everything on the Grotto was burned. David said the only thing that remained was your picture....Daddy and I talked about what we thought this meant and we have chosen to believe that someone is watching over you and protecting you..
Ryan you are doing great and are now taking your medicine with no problems at all.
I think the fact that we are bribing you with freezes and Popsicles.
Your hair is starting to come in, and it is coming in very nice, not in patches....it feels like a new born babies head....so soft....
Your tummy still bothers you and your bowl movements are still more frequent than most people, this will take time...All the chemo that gave you mucocitis I think has affected your tummy in some way. Some people get Graft VS Host of the gut...I do not think you have this, but I keep telling myself that your tummy and bowl issues may be what is keeping you in remission.
My belief is that Ally is attacking you in some small way. This keeps me positive.
I still have my bad days, days when I just cry for no reason, days that are just worse than others.
I watch you sleep and play with your friends and see the joy you have in everything that you do .
Ryan, continue to let Ally fight inside you and continue to be the wonderful little boy that you are.
Mommy.
So you Nana in Ireland called last night to tell us that your Uncle Phillip and Cousin David, went to the Gratto.....Many people have gone to this Grotto in Ireland and placed things about a person who needs to be healed. So they placed the dinosaur that you gave your Uncle Phillipo to remember you by when he was here and a scanned picture of you. Dave went back up to see it and from what I gathered from the conversation is that someone put candles to help heal there loved one and everything on the Grotto was burned. David said the only thing that remained was your picture....Daddy and I talked about what we thought this meant and we have chosen to believe that someone is watching over you and protecting you..
Ryan you are doing great and are now taking your medicine with no problems at all.
I think the fact that we are bribing you with freezes and Popsicles.
Your hair is starting to come in, and it is coming in very nice, not in patches....it feels like a new born babies head....so soft....
Your tummy still bothers you and your bowl movements are still more frequent than most people, this will take time...All the chemo that gave you mucocitis I think has affected your tummy in some way. Some people get Graft VS Host of the gut...I do not think you have this, but I keep telling myself that your tummy and bowl issues may be what is keeping you in remission.
My belief is that Ally is attacking you in some small way. This keeps me positive.
I still have my bad days, days when I just cry for no reason, days that are just worse than others.
I watch you sleep and play with your friends and see the joy you have in everything that you do .
Ryan, continue to let Ally fight inside you and continue to be the wonderful little boy that you are.
Mommy.
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