Although we have many things to be Thankful for this year I wanted to take a few moments to focus on what matters most to us lately:
People (in no particular order):
We are thankful for the wonderful caring doctors and medical professionals at Legacy Emanuel. We're thankful for the doctor's who motivate my son every morning with "Pirate Gold", The crazy jokes they tell (that only a 6 year old would love), the Nurses that ask my son if he wants a band aid. The staff that keep the coffee pots filled for the parents that are operating on less than 5 hours of sleep. The surgeon's and staff that take time out of their busy schedule to ask how Connor is doing while passing in the halls.
We are thankful for the wonderful friends and acquaintances that we have met here in Oregon. The people who have made us feel part of their family. The good people who offer help, prayers and love. The people who provide a pleasant distraction during this crazy time in our lives. The one's who still offer their help, even when we are at a loss for what we need help with. The people who support Connor.
We are thankful for old friends who let us know we are still in their thoughts no matter how far away we are or how long it's been since we've seen them last.
We are thankful to people who continue to help Connor and support him during this journey, and all of those who have crossed his path and touched his life.
We are thankful to all of the children who have shown Connor compassion, kindness and love.
We are thankful for family, who hold us up emotionally. We know even though we are far in distance we are still close at heart.
We are thankful for all of you, who care enough to read this and follow Connor's treatment.
We are thankful for our son who makes us laugh everyday, who reminds us about courage and strength, and compassion, and hope.
Wednesday, November 25, 2009
29 radiation treatments....
1 left. Today went off without a hitch. It was our last day with Dr. Rose (Connor's anaesthesiologist, we will miss him very much).
I wrote this excerpt about radiation treatment a few days after Connor had just started. It seems so long ago.
Radiation Treatment: The Ride of your life
Our family got in line on October 19th 2009.
We didn't choose to get in line
There was no option to go around.
I wanted to raise my hand to get out of line, but everyone had their hand raised and it did not seem to matter.
"Excuse me", I asked the family in front of us,
"Do you know how we can get around ?"
"There is no way around," they said. "We all must wait."
"Maybe we could trade with someone," I offered.
"Trust me, there is no one who wants to volunteer to stand in this line," They said.
On our way towards the front of the line I saw a roller coaster and a big sign that read:
WARNING You may experience the following emotions: Loss, Grief, Anger, Pain, Helplessness, Sadness and many others.
As I waited to get on the ride my knees began to buckle, I felt like I had been waiting in line forever. I felt nauseous and lightheaded. I wanted to scream, and cry and bang my fists on the floor. I didn't want to get on this ride. It really wasn't fair.
So many people came to talk to me while I waited in line, but I was deaf to their words. Many people offered to stand by my side, and even though they couldn't ride with me they eased my fears.
As we were seated I trembled with fear. I was so scared of the unknown. The roller coaster took off. The first climb was the scariest, we didn't know what to expect. After we navigated a few turns it got easier. The highs were full of excitement, happiness, and joy. The lows were frightening, unbearable, and exhausting.
As we got closer to the end I felt such comfort, and relief. The ride took us places we have never been before. The ride was turbulent, but there were also times that we actually enjoyed the ride.
We finally made our way to the end. We had some bumps and bruises, but we survived. We stepped off empowered, Brave, Strong, Thankful and full of Hope.
I wrote this excerpt about radiation treatment a few days after Connor had just started. It seems so long ago.
Radiation Treatment: The Ride of your life
Our family got in line on October 19th 2009.
We didn't choose to get in line
There was no option to go around.
I wanted to raise my hand to get out of line, but everyone had their hand raised and it did not seem to matter.
"Excuse me", I asked the family in front of us,
"Do you know how we can get around ?"
"There is no way around," they said. "We all must wait."
"Maybe we could trade with someone," I offered.
"Trust me, there is no one who wants to volunteer to stand in this line," They said.
On our way towards the front of the line I saw a roller coaster and a big sign that read:
WARNING You may experience the following emotions: Loss, Grief, Anger, Pain, Helplessness, Sadness and many others.
As I waited to get on the ride my knees began to buckle, I felt like I had been waiting in line forever. I felt nauseous and lightheaded. I wanted to scream, and cry and bang my fists on the floor. I didn't want to get on this ride. It really wasn't fair.
So many people came to talk to me while I waited in line, but I was deaf to their words. Many people offered to stand by my side, and even though they couldn't ride with me they eased my fears.
As we were seated I trembled with fear. I was so scared of the unknown. The roller coaster took off. The first climb was the scariest, we didn't know what to expect. After we navigated a few turns it got easier. The highs were full of excitement, happiness, and joy. The lows were frightening, unbearable, and exhausting.
As we got closer to the end I felt such comfort, and relief. The ride took us places we have never been before. The ride was turbulent, but there were also times that we actually enjoyed the ride.
We finally made our way to the end. We had some bumps and bruises, but we survived. We stepped off empowered, Brave, Strong, Thankful and full of Hope.
We're down to the final 2 ....
Radiation treatments that is.
Can you believe it? Neither can I.
Chemo on Monday went well. Thanks for all of your thoughts and prayers. Connor gained weight, and his total ANC count went from 250 to 490. It's not recommended that he be in large groups of people (or School) with a count under 500, but we were happy to see an improvement.
Best of all Connor is getting back to his usual self. Although he still is unsteady, has some left side weakness, and has issues with his eyes aligning he continues to make great progress every day. We enjoyed a game of basketball (He was able to play standing up without holding onto anything or needing any support), he played some Frisbee (he is still so much better at that than I am), and for the first time since surgery he was able to climb up his play structure and go down the slide.
It's really amazing as I look back to just a few months ago when I wondered if he would ever even walk on his own again. Today I revel in the fact he can walk down the stairs and navigate our bumpy hilly back yard with no assistance.
Today is our "Friday" and we are sure looking forward to enjoying 4 days off from the Hospital.
After Connor's last day of radiation (the 30th) he will have 4 weeks off from ALL treatment. Our only trips during his break will be to go in once a week to have his port accessed and blood drawn, and after Christmas week he will have a Brain and Spinal MRI (Please pray for good results!).
We're hoping his ANC counts go up during his December "break" so that he can enjoy some School time fun with his friends.
The best part of my day: Watching my son regain his confidence. Seeing the complete joy on his face when he made a basket. Watching him take a step back to try it from a little farther away. Smiling when he said "Hey Mom, Don't you think it's great I'm getting back to normal?" (Mommy can't even describe how GREAT she thinks it is.. )
Can you believe it? Neither can I.
Chemo on Monday went well. Thanks for all of your thoughts and prayers. Connor gained weight, and his total ANC count went from 250 to 490. It's not recommended that he be in large groups of people (or School) with a count under 500, but we were happy to see an improvement.
Best of all Connor is getting back to his usual self. Although he still is unsteady, has some left side weakness, and has issues with his eyes aligning he continues to make great progress every day. We enjoyed a game of basketball (He was able to play standing up without holding onto anything or needing any support), he played some Frisbee (he is still so much better at that than I am), and for the first time since surgery he was able to climb up his play structure and go down the slide.
It's really amazing as I look back to just a few months ago when I wondered if he would ever even walk on his own again. Today I revel in the fact he can walk down the stairs and navigate our bumpy hilly back yard with no assistance.
Today is our "Friday" and we are sure looking forward to enjoying 4 days off from the Hospital.
After Connor's last day of radiation (the 30th) he will have 4 weeks off from ALL treatment. Our only trips during his break will be to go in once a week to have his port accessed and blood drawn, and after Christmas week he will have a Brain and Spinal MRI (Please pray for good results!).
We're hoping his ANC counts go up during his December "break" so that he can enjoy some School time fun with his friends.
The best part of my day: Watching my son regain his confidence. Seeing the complete joy on his face when he made a basket. Watching him take a step back to try it from a little farther away. Smiling when he said "Hey Mom, Don't you think it's great I'm getting back to normal?" (Mommy can't even describe how GREAT she thinks it is.. )
Monday, November 23, 2009
Show me one hand
Now put down your thumb... that's 4 .. that's right only 4 more radiation treatments !! Can I get a Whoo Hoo!!!
We have treatment today, Tuesday, Wed and then Monday the 30th !! We get to enjoy a 4 day Thanksgiving break.
After Radiation we have our usual trip to get Connor's Vincristine. We are loaded with questions. Now that Radiation is stopping and we will be starting the maintenance phase of Chemo in January we need to clarify the process a little more.
Connor has sure been enjoying reading. He reads everywhere we go. Road Signs, Menu's, Posters, and Lately Recipes. Connor is definitely ready for the holidays. His #1 request baking cookies (Here is your advance warning mom he really wants apple pie!). So we made a cake together this week. He read all of the ingredients and the directions a step at a time. He did great. Then we got to the eggs (which can be a bit of a problem since he's still hesitant about using his left hand which still shakes), but he cracked it like a pro. Then he throws both halves of the shell in the bowl. "Hmm," I said. Why did you do that?" ... "Mom it said 3 WHOLE eggs, so I put in the whole thing", he exclaimed. The English language is interesting.
I was able to get out with a friend to visit some craft stores (It was so nice getting out of the bubble for a little bit). We had some time to putter around the house to prepare for the holidays.
We're hoping his ANC count goes up today, and his weight remains steady (send the good blood and weight vibes his way).
Best thing about this weekend: Breakfast with the family.
Shocking: Connor now has blue hair, with spikes.
A big thanks: To everyone who has purchased his Cards and Donated to his giving project.
We have treatment today, Tuesday, Wed and then Monday the 30th !! We get to enjoy a 4 day Thanksgiving break.
After Radiation we have our usual trip to get Connor's Vincristine. We are loaded with questions. Now that Radiation is stopping and we will be starting the maintenance phase of Chemo in January we need to clarify the process a little more.
Connor has sure been enjoying reading. He reads everywhere we go. Road Signs, Menu's, Posters, and Lately Recipes. Connor is definitely ready for the holidays. His #1 request baking cookies (Here is your advance warning mom he really wants apple pie!). So we made a cake together this week. He read all of the ingredients and the directions a step at a time. He did great. Then we got to the eggs (which can be a bit of a problem since he's still hesitant about using his left hand which still shakes), but he cracked it like a pro. Then he throws both halves of the shell in the bowl. "Hmm," I said. Why did you do that?" ... "Mom it said 3 WHOLE eggs, so I put in the whole thing", he exclaimed. The English language is interesting.
I was able to get out with a friend to visit some craft stores (It was so nice getting out of the bubble for a little bit). We had some time to putter around the house to prepare for the holidays.
We're hoping his ANC count goes up today, and his weight remains steady (send the good blood and weight vibes his way).
Best thing about this weekend: Breakfast with the family.
Shocking: Connor now has blue hair, with spikes.
A big thanks: To everyone who has purchased his Cards and Donated to his giving project.
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