Happy New Year

Happy New Year! We're definitely ready for it!


We enjoyed a nice evening of appetizers, and a cracked crab dinner. I think Connor ate a whole crab all by himself.

Connor almost made it, he fell asleep at 9:30.

Wishing you the best of health, much happiness, lots of laughs and much kindness in 2010.

A quick update

Connor's MRI scans showed NO tumor recurrence (Yay!!). His blood counts were fabulous (Over 4,000, the best yet!). His hearing test showed no hearing loss.

He had some swelling (most likely a side effect from the radiation), and he has been taking steroids to help with the edema. They are definitely helping and have also increased his appetite. Connor has gained 2 pounds since last week (mostly from Chocolate cake I'm sure lol).

He's all set to start his maintenance phase of Chemo on the 4th. He will have Chemo for 6 hours followed by 24 hours of hydration.

He's a tough guy for sure. We send our love to everyone and hope you have a fabulous New Years celebration.

Cotton Candy for me please

Connor had his MRI this morning at 6:15. He was a real trooper. He was able to choose a special "Smell" for his anaesthesia gas. He chose cotton candy (too bad they didn't offer chocolate cake).

He woke up happy, and was extra hungry for: Chocolate Cake of course.

We will be getting the MRI results after Connor's hearing test, tomorrow afternoon.

We had a big surprise this afternoon.... snow. Connor enjoyed it so much, he has been waiting for snow all month.

Thanks for all the prayers and well wishes for a clean scan.

A nice thing: Some of the nurses that helped Connor when he was in Radiation Treatment, were there for his MRI. It was like seeing old friends.

The best part of my day: Connor enjoying the snow.
The best part of Connor's day: Chocolate Cake

I hope everyone had a lovely Christmas. Connor decided to leave Santa Chocolate Milk this year because he thought "Santa might be tired of regular white milk". He was so excited to see that Santa ate his cookies and drank his chocolate milk.

We hope we didn't disturb the neighbors too much while we blasted guitar hero all day.

On Saturday we took the family for an overnight stay in Seaside. Connor loved walking on the beach, playing arcade games, eating clam chowder, feeding the seals, swimming in the pool, and eating chocolate cake. Lots of fun was had by all.

Tomorrow is a big day for us. Connor is getting a full head and spine MRI tomorrow morning at 6:15. Please pray for clean results.

Best part of the day: My son's new found love for Chocolate cake. How does he manage to get it on his forehead?

What do you see through your glasses?

Our week has been so full. We have been enjoying having our family close with us during this time of year. Connor's counts have been up and are the highest yet, his total blood count was over 2,000 on his blood draw this week.

Connor has been enjoying (and probably wearing out) his family. He went bowling, to the movies and has been eating lots of yummy baked goodies. I wanted to send a heartfelt thanks to all the people that have thought of our family during the holidays. The kindness of all of the anonymous gifts has been so overwhelming. The cards, the gift baskets, and the homemade gifts were all so lovely.

I hope you find your heart full on this Christmas eve. I've been given a new pair of glasses this year that allows me to see the things that matter most. I see things that I have never seen before and I see things clearly that before were blurry. I can actually see the love that family, friends, and strangers share with my son. I see small things that don't matter so much, and small things that mean so very much. I hug a little more, I watch a little more, I experience life a little more. I cry a lot more, but I also love a lot more. Although I am more scared than I have ever been in my life, my heart is filled to the brim with love.

Thank you to everyone who has sent Connor a gift, a card, a thought or a prayer. Your well wishes, love and prayers keep our hope strong.

I wish you and all of yours a very Merry Christmas.

The best part of today: Loving life, Living life, hearing Connor laugh, seeing him smile and feeling his hugs.

Something funny he said today: My mom bought a cake from the bakery and it got a little smashed up in the box, she was trying to smooth out the frosting and Connor said, "Grandma you don't need to do that, just take it back and have them re-frost it."

Time flies when you are having fun

It has been a fun and exciting week for Connor. Friday was very busy.

Grandma Debbie, Grandpa Roger and Auntie Mallory arrived early Friday morning, Connor has been counting down the days for them to visit.



Connor's class had a lovely Christmas celebration Friday morning. There was a relay race, book exchange and some fun Christmas dancing and singing. It was so great seeing the Holiday joy on those kids faces.

After Connor's Christmas party we took him to see the Neurological Opthamologist. She was very pleased that his optic nerves looked great, and his vision was great. She confirmed our suspicions that the ptosis he's experiencing is a side effect of his Chemo drug Vincristine. She also told us she has seen quite a few kids with the same side effect from Chemo, and the condition is generally temporary and improves after they stop taking the drug. We are going to work at getting Connor a pair of glasses with a ptosis crutch (This is a photo of what a ptosis crutch looks like). He will wear the glasses a couple times a day to lift his eye lid. This will keep the eye active and prevent it from getting weak. He was a champ at getting his eyes dilated.




Connor has been having a blast playing with grandma, grandpa and auntie. It definitely feels a lot more like Christmas when you are surrounded by family.





Saturday he was pretty exhausted and went to bed pretty early, it was such a busy and fun week for him.





Our mystery gifts continue. Each one is unique, and so very thoughtful. One of the packages this weekend included a harmonica. Connor must have played that for about an hour straight. It's nice when





We also have been receiving a different piece of a nativity set every night. It gets dropped off on the front porch every night. Whoever is leaving the stealth presents has been pretty elusive. Our dog Sparky (or barky and he's warmly regarded), doesn't even bark or notice. The set is beautiful and it's a nice reminder of the real reason for Christmas.





Please rest assured if I don't write as much for the next few days, everything is well. I'm just soaking in all the love from the family.








One of Connor's favorite activities to play with Grandpa: Paper Airplanes

It's all pretty amazing.

We continue to receive mystery gifts. I know I have said it before, but it truly amazes me. I don't really have the right words to describe how overwhelming the generosity has been.

Connor was able to enjoy a nice afternoon at School on Tuesday and Wednesday.

On Tuesday Connor was excited about participating in P.E, although he was concerned about not being able to run. I re-assured him that he just needed to do his best, even if he wasn't able to run.

The last time he went to P.E he was still in his wheelchair, yesterday he participated in a relay race. It's truly amazing to me. Although some folks may just see a kid who has challenges, I see a little boy who has accomplished so much, and continues to accomplish so much everyday.

Post surgery I had no idea if my little boy would ever walk again. On Tuesday he did a super fast walk (in place of jogging), Galloped (by holding onto my hands), Skated on Paper Plates, and used a scooter board (with some support). I was prepared for him to be upset, or frustrated, or angry because he "couldn't do the same stuff" as before; instead I had a little boy who was excited about his accomplishments. "Wasn't that great?" he asked me, "Did you see all that stuff I did?", "Yes I did" I told him, "I loved how you did your best."

I was also impressed by the teamwork of Connor's class. There were no long faces because they "lost" the relay, instead I heard lots of "Good Job Connor!" and "You did it!". Again, Amazing.

Well needless to say after a long Tuesday, Connor woke up sore this morning. His little legs had a big work out.

Today Connor went to library, did math, and films. The class was so energized by their teacher. Their personal favorite had to be "Build a Man" (Hangman). What a super creative way for kids to learn about letters and spelling.

Miss Horn is like a Rock Star to those kids. They have such admiration for her. She's like a perfect sweet and sour sauce, Just enough sweet to balance the sour.

I am continually impressed by the Teacher's and staff at Connor's school. They continue to do more with less, they are creative, and fun. Yet firm and have high expectations.

Visiting that classroom always renews my hope for the future. Not just my son's future but our future as a country. There is so much good to still be found in young children. So many great qualities to encourage and celebrate.

If these kids were in a dark room they would truly shine.

Party with his Chemo Pal

Connor had a great party on Sunday with his Chemo pal Nick. Connor was able to meet some of the wonderful retired Trailblazers who volunteered their time to make a special day for approximately 300 area kids.

Connor's counts went down today, but they weren't low enough to prevent him from going to School this week. Hopefully he can participate in some of the fun activities this week.

Connor donated some of his DVD players to Legacy Today. The Social worker said they already have a candidate that is ready to start treatment. Although they can't give us their name, we have included our contact information and hope to be able to put a photo on Connor's Fan site for each recipient. Thank you to everyone that has helped/and continues to help with his project.

Friends, Food and no Freezing rain

We were expecting freezing rain and possibly snow today, so we decided to take a rain check on driving to Portland to see the play. Unfortunately the freezing rain never came.

In lieu of missing the play we had a wonderful time with our friends tonight. Always good times, and good laughs.

Connor received another fun surprise gift: a cookie cutter set, with sprinkles and a cool tie dyed apron. Mommy and Daddy got some mugs with hot cocoa mix. These gifts are so kind and thoughtful. We will be enjoying some quiet time this evening with our feet up !

Tomorrow Connor has his Christmas Party with Chemo Pal Nick he's really looking forward to it.

Best Part of today: Greg FINALLY won his first game of Catan

Mail time

Christmas is forever, not for just one day, for loving, sharing, giving are not to put away,
like bells and lights and tinsel, in some box put upon a shelf. The good you do for others is good you do yourself... - Norman Wesley Brooks

Connor has received his third anonymous gift this week (Thank you for the awesome gifts anonymous sender(s)!). Greg of course has been racking his brain trying to figure out who they're from, but it is clear they are from "someone who cares".

I also wanted to send out a big Hug and Thank you to our friend Stella. In lieu of birthday gifts her generous family collected donations on behalf of Connor's DVD player project, he was able to purchase two more DVD's players. A big thank you to Stella's friends and family!

Another big thank you to everyone who has purchased his cards and made donations. Those children and families will be so appreciative.

Connor has a big weekend planned. On Saturday we are attending a live theater performance of a Christmas Carol, and on Sunday Connor is going to a Christmas Party with Chemo Pal Nick (both sponsored by CCA). Both will be great opportunities for him to meet other children affected by Cancer.

Although this tragedy has affected us this year, my heart feels so full. I feel closer to family, friends, strangers, just life in general. So many things touch my heart every day. I appreciate so many more things.

We received some unsettling news from Greg's work, there will be some layoffs. It's not clear how many,when, or who at this time. Greg's co-workers have always been so kind to us, they were some of the 1st to welcome us to this community. He works with many kind and compassionate people. We understand that times are hard for many businesses, and people right now. We hope and pray that these times will get better, and we can offer what we can for those in need.

Now that I'm a mom I realize how important it is to create new traditions as well as honor some of the old during this holiday Season. For this month I've marked some activities that I would like our family to share during the season.

What about you? What are some of your traditions?

Today's Tradition: Making an Ornament
Something funny Connor said: "Mom I LOVE playing Star Wars with you, It's sooooo much easier to win, than when I play against Dad".
The best part of my day: Looking at old photos with Connor. We came across a photo of my wedding dress during my fitting and he said "Mom, you looked so beautiful in that dress, you should wear that more often"

He lost another ....

I can't believe I forgot to report Connor lost his tooth on Sunday! All is well the tooth fairy came and picked it up.

Connor and I went Christmas Shopping today for Greg. The stuff he picks out for Greg is always so entertaining.

Connor had a nice tutoring session with Miss Horn today, after that we met some friends for Dinner. Connor scored some new vending machine tattoos.

On our way home Connor asked if he could stop at "that store that is open 7 days a week! to get a Popsicle". After a game of 20 questions we finally figured out he meant Rose Valley Market. He scored a crunch ice cream bar and I had a fudge bar. I know it's pretty crazy to be eating a Popsicle when it's 25 degrees outside.

Something Funny Connor Said today:
On the way home Connor said "Mommy I want you to be with me forever"
"Ahhh that's so sweet Connor" I said
"Can I have a bite of your ice cream now?" He said.

The best part of the day:
Shopping with my little dude.
For Connor: Having teacher come over

Counts are still up

Connor had a nice weekend. It was great that his counts were up (we were able to get out a little and do some shopping).

He had an appointment for a blood draw this afternoon. It was strange going back to the hospital after being off for a whole week. Connor was a little nervous about having his port accessed again, but we had some pleasant distraction from Chemo Pal Nick.

Chemo Pal Nick stocked up on some new games and we enjoyed a few rounds of crazy 8's and UNO while waiting for the doctor and the lab results. I can't express enough how wonderful the Chemo Pal program is. CCA (Children's Cancer Association) really does a lot of great things for Children and Families affected by Cancer.

Connor's counts were up again this week and so was his weight (Hooray!!), although he would normally be able to go to School this week, some students in his class have recently received the H1N1 flu mist which will prevent him from attending School for 5 days. Miss Horn is keeping us posted, and although he is disappointed about not seeing his friends, we understand the precaution and appreciate the parents in his class notifying his teacher.

Connor is scheduled for a routine MRI for his head and spine on 12/29 please pray and send good thoughts his way that the scans are clear. On 12/30 he will have another hearing test. Some of the chemo causes hearing loss, so they will be establishing a base line.

Connor's 1st round of Maintenance Chemo will be on January 4th. He will be admitted to the hospital for an overnight stay. He will receive 6 hours of the Chemo drug Cisplatin followed by 24 hours of fluid.

The best thing about today: Connor feeling good
Something exciting: Greg found a shortcut

Brrrr it was cold today ..

It was a busy day for Connor yesterday. He had another great day at School. After School we met with his local doctor to touch bases, It's was our first visit since his diagnosis, so we had a lot to catch up on. After his appointment he had a tutoring session with Miss Horn. He went to bed pretty exhausted.

By the feel of things it's almost as if Winter has arrived early, I think it's time to unearth the snow gear.

Connor was able to visit his Dad at work for lunch today. That has always been a special treat for Connor since he was little. He loves getting a special treat from the vending machine at work. Today was extra special, Greg's friend at work gave him a super cool Clone trooper helmet set. After I was able to remove it from the packaging, He spent about 30 minutes shooting foam darts at his action figures (at least it wasn't at me lol).

I want to thank everyone who have purchased Connor's cards. Through your generous donations he has enough to purchase 2 DVD players and has a great start towards a third. As the Social workers have a child that meet the criteria they will be able to present the DVD players to them, and hopefully make that families daily trip to radiation a little easier.

We will be retiring some of Connor's cards at the end of the month, and will be replacing them with new designs soon.

Many people have been so generous to our family, and again I wanted to extend our Thanks.
As Christmas approaches many people have asked what they can send Connor and our family this year:

For Connor:
Books (Please feel free to write an short message on the inside cover)
Gift Cards to Blockbuster (He loves to rent games from there)
Gift Cards to Toys R US (He really enjoys taking a day trip there)

For Us:
A Christmas Ornament from your family
Gift Cards to local stores (Safeway or Wal mart) to help with our misc. expenses

Connor has another loose tooth, I expect it to fall out (or be pulled out lol) within the next week.

I hope everyone has a lovely weekend, and takes some time out to enjoy the sights of the season.

"That was a great day mom!!!"

Connor slept great last night. We took a quick trip to Fred Meyer to pick up Connor's prescriptions and then we were off to School.

We brought Connor's walker I wasn't really sure exactly what he would need for support. When we got there the class was working on workbooks and reading. Connor opened his workbook and started working on a worksheet, then he joined his group for reading.

After reading he went to recess. He did a great job navigating the playground without his walker. He was so excited to see his friends, he showed me around the playground. Lots of kids came up to him, and told him they were excited to see him back. It was nice watching him have "normal" 6 year old interactions with his peers (Chatting about Christmas, and Thanksgiving, and family vacations, my dad this my mom that). I know he has been missing other kids.

After recess he went to the library. The Librarian read a darling book called "Snowmen at Christmas" (lovely illustrations). Connor picked out a Military Plane book, and the Librarian was very kind to lend him some extra books to read at home, she always picks great books, he loves Library time.

Connor decided he wanted to stay through lunch and second recess. By second recess he left me in the dust and was off with his friends. He played 4 square and caught up on a lot of much needed socializing.

It was very aparent how well Connor's teacher has educated her class on Connor's disease. They all treated him like "normal". They made him feel very welcomed, but not overwhelmed. At lunch and recess he got several looks from other kids that weren't in his class, but he took it all in stride. I asked him if he was concerned about that, and he told me "No mom it's ok, they probably just don't know that I'm alright".

I could tell he did his best today, and that he was going to be just fine.

At recess a little girl came up to me and said "I'm very happy that Connor is back, it's so great that he can walk around now and doesn't need a wheelchair".
I agreed with her and told her how hard Connor was working to get his strength back.
"It's sad he lost his hair", she said "I hope it comes back"
"Oh it should," I told her, "but honestly he's happy he doesn't have to brush it"
She laughed and then said, "but the best thing is.... that he's O.K"
And then I had to hide my face to wipe the tears away, because she got it.
A 6 year old nailed it on the head .. the BEST thing is that he's O.K

On the way out of the doors Connor said, "That was a GREAT day mom", and it was.

At home we cuddled up on the couch with a big blanket, a bowl of popcorn and a movie, he was exhausted, but sooo happy.

The best part of my day: School, it was a huge boost to Connor's Self Confidence. It relieved a lot of anxiety that he had about things he wasn't sure if he would be able to do or not.

Something I was thankful for: Miss Horn and all the other Teacher's and Staff at Connor's School, and the kids who just "get it".

We're done with radiation

We had a lovely 4 day weekend. We enjoyed the normal things of the Season. Roasting our Turkey, putting up some Christmas decorations, and driving around town looking at all the lights that are already up while listening to Christmas music on the radio. This year we had a virtual Thanksgiving with some of our family in CA using an online service called Skype. Connor thought that was so exciting.

We said our goodbyes and thank-yous to the wonderful staff at the Radiation department. Although we will miss them all we won't be missing the daily drive to the hospital.

As we waited for Connor to wake up on his last day of radiation treatment Greg and I felt very blessed. There were so many wonderful people from the Radiation & Anaesthesia team that have touched his life (and ours). They have taken such good care of him these last 6 weeks.

After Connor woke up (which went very well the last day) we met with Chemo Pal Nick. Connor always looks forward to his time with him. We played more Go Fish and Old Maid.

Connor's blood counts were up today (yay!!!). His total count was up to 958. Looks like we'll be able to head to school this week!

Connor was de-accessed, and we picked up a Video Game rental to Celebrate. Connor also requested a "Party" so we had cupcakes and he blew out 6 candles (to represent) the last 6 weeks of treatment.

For December he only needs to go in once a week to have his blood tested. We are looking forward to this much needed break.

The Best part of the day: Completing Treatment, Celebrating Connor's accomplishment, and moving forward with life.

Thankful

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.

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.

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.. )

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.

Do you see it?

I was wondering if you see the good in people? Since our world was rocked on 9/19 I've been amazed by all the good I see around me. Was it here before? probably. Did I embrace it as much as I do now? Not nearly enough.

We feel warmly wrapped in a blanket of love. Family, friends and even complete strangers consistently go out of their way to show they care. More importantly people let us know we are in their thoughts, and that they are following Connor's journey. We feel less alone in the march with all of you around to hold us up.

Even you, that person that religiously reads my blog, that I may not know, that never leaves a comment, but comes here everyday, helps me.

As we get prepared for Connor's 24th day of radiation, my body aches with anticipation to complete this phase of treatment. At the same time I tremble with fear, since radiation has become so routine, and the next phase of treatment (Chemotherapy) becomes the unknown. I know that it too will become (albeit unfortunate) familiar.

My son was in all his glory today. Laughing, cracking jokes, full of excitement, inquisitive, and loving. We definitely celebrate the good days like we had today.

I stare at my son sometimes (he hates it by the way) and I try to take a mental picture of him right now, this day, this moment. I know that moment is the only one that matters.

I see a boy who doesn't dwell on what is happening to him, but rather a brave Jedi who embraces his life no matter what it has become, or has been placed before him.

At the library the librarian started talking to Connor about his book selection (I think he checked out the whole children's section that day, but mostly dinosaur books). "I see you like dinosaurs", she said. "Yes, he said. You see I'm an explorer, and I like to explore things, I like to search for rocks and treasure". "That sounds exciting", she said "Yes it is. Sorry I can't talk anymore, my throat is dry because I just had Radiation".

So tonight I ask that you embrace your life. See the good in people around you. Take mental pictures of those you love. Tackle the obstacles that are thrown in your path (as best you can), and explore life.

we're down to 8 ...

As we headed to Portland today and I looked out the window I couldn't help but smile. Although Connor still has a long journey ahead of him, we are looking forward to celebrating our last day of radiation treatment. When Connor completes his 30th day we will fill up 30 balloons and let him pop them (so if you hear loud popping it's just us in the backyard !!)

My heart aches when I see new children in the radiation office. It's not a place you want to see new faces.

I wanted to thank everyone for purchasing Connor's cards. Everyone has been so kind. One of Connor's nurses has offered to include a basket of his cards on her craft table at the hospitals upcoming bazaar.

His goal is to sell at least 40 cards and Donate a DVD player before Christmas.

Connor was pretty sleepy after treatment today. He took a long nap on the couch after we got home. We spent the rest of the day doing some art, playing UNO, taking a short walk and relaxing.

His appetite is improving, and he was real fond of "breakfast" for dinner tonight. He ate extra maple sausages.

The best part of our day
Sitting and watching our sweet sweet boy sleep, and get some much needed rest.

9 more radiation treatments left

I'm actually able to see a glimpse of the radiation finish line. When we first started I didn't think that would ever be possible, hearing your child will need 6 weeks of radiation treatment seems like a lifetime when you are in a cloud of the unknown. As things become more familiar it does become easier.

I'm so proud of my son every Monday when he hops up on to the table to get his port accessed, he squeezes his daddy's hand and cracks jokes with the nurse. Then he travels down the hall to the radiation room, hops up on the table, asks for a warm blanket, starts his anaesthesia, rolls over onto his tummy and falls asleep.

He does all that they ask.

Today I accidentally leaned on the big button that shuts the door in the radiation room. That thing is huge I should definitely take a picture of it ! (for those who know me, the fact I did something like that shouldn't surprise anyone lol). The look of panic flashed across my face. The big door closes on it's own and I wasn't sure how to stop it from closing, and for fear of being crushed by the giant door I didn't want to stop it manually. NOTE TO SELF: Push the button again to stop it. (I won't be doing that again, I'll be staying away from that button).

We really enjoyed spending time with Connor's Chemo Pal Nick today. Although he is Connor's Pal, we enjoy the time with Nick as much as he does. We filled a whole hour playing Old Maid and Go Fish.

As we wander around the hospital we are constantly running into various medical personnel who have helped Connor at one point or another since his diagnosis. It's nice to see that these people genuinely care about how he is doing and remember him.

Chemo went off without a hitch, another dose of Vincristine. We are keeping an eye on some coordination problems and eye problems that can be a result of the Vincristine. Connor's white blood count is very low, He shouldn't be around groups of people, so he will be hanging out at home until his counts recover. Although he has completed the radiation to his spine, the effects of radiation are still present and can limit production of white blood cells in his bone marrow.

What made me smile today Connor and Greg spending "Guy time together"
What blew my socks off: That huge wind storm we had today !
The best part of Connor's day: Playing a snowboarding game with his dad

Home sweet home

We finally made it back home yippee !!! Nothing like a night in the hospital to remind you how much you miss your own bed.

Connor had some movement around 7 last night and on-going for every 30 minutes until about midnight. Fortunately he was able to sleep solid from midnight until 7:30 this morning. After radiation we went back to the hospital and resumed his "Golytely" (Which is anything but lightly BTW), and around 5 ish this evening he was acceptable to be discharged.

He's feeling like a million bucks tonight. Totally back to his normal self. Playing Video games against dad right now (and probably dominating the game).

Something funny: The Nurse asked Connor if he would like Ice Chips or a Popsicle, "Yes", he said "I'll have both please, I'll make you work today".

I met with Connor's radiologist and he told me that Connor has been aligning "Beautifully", he was very pleased.

SO DO YOU KNOW WHAT MONDAY IS ? It will be our 20th radiation session (Only 10 more to go !!!!!!)
I hope everyone has a fabulous weekend!

Something I appreciated today: My son's strength, and my husbands love.

Monkey Business

Connor's Monkey had a great time in P.E today!

Thanks for the update Miss Horn! We just love them!

I'll call them Frank

After I wrote my last blog entry on Monday I definitely should have knocked on wood. The rest of this week has been far from predictable.

WARNING

If you are a little squeamish about gastrointestinal issues you might want to skip today's post.

Tuesday afternoon we found out that Connor's X-rays (from Monday) showed some moderate constipation. We were warned that his chemo drug Vincristine can cause some constipation, but we weren't really aware what a terrible cycle it can really become.

Because of his constipation:

1. He doesn't really want to eat, or drink (which really limits how much oral stool softener he receives).

2. He gets cramping which makes him nauseous (which expells the stool softener before it can effective), and the cramps make it difficult for him to want to walk around (which would normally help with the bowel movement).

On Monday we were advised that the Dr. Wanted to to avoid an enema or suppository for risk of infection.

On Tuesday we were advised to double his Oral stool softener.

On Wednesday we stayed after radiation treatment from 1-5pm. He was given an enema and a suppository and a glass of Miralax. ALL with no luck. We were advised if he had no movement by Thursday AM they would insert a nose tube (under sedation) and we would check in around 10:30 am and spend the day in day treatment while they filled him up with Golytely until he was productive.

So Today: The tube insertion went good. We got over to day treatment and we were advised they wanted to place us in an inpatient room (because those rooms have private restrooms). We were advised it would be about a 3o minute wait. We entertained Connor and told him not to get too comfortable. 30 minutes turned into an hour, which turned into about 3 and a half hours before we got in a room.

The doctor advised us that it would probably take about 4-10 hours for Connor to take in all the liquid. YIKES! He had another x-ray (which was very compacted) So, after a later start than expected, Connor got started and within an hour and a half he got sick and expelled the tube.

He had a second tube placed while he was awake (he was a world class champ !!!!!!!)

So our Schedule will be:

Tonight: Sit and Wait for movement, Spend the night here.

<----------- Where I will be sleeping (definitely not a sleep number bed)

Friday:

2am: The nurse will stop his Golytely (Since he can't have anything in his stomach for Anaesthesia tomorrow morning)

8 am: Go across the street and have Radiation Treatment

10am: Post Radiation Treatment we will come back to our room and finish his "Liquid Magic" and wait for it to do it's thing.

The Child Life specialists are keeping him entertained with lots of video entertainment (and the Verced is keeping him calm).

Note to self: Avoid future constipation issues at ALL costs.

Something funny Connor said: We were talking about Christmas songs and I asked Connor if he could remember the names of all Santa's Reindeer's. "Rudolf", he said. "There are more" I told him. Connor said, "I don't remember their names mom, I'll just call them ALL Frank."

I'm glad that: I packed an emergency overnight bag

I'm thankful: that Connor will be feeling much better in the next few days.

I've added a link to the left if you are interested in purchasing cards. (Thanks to everyone who has been supporting Connor's fundraiser!).

Week 4 of radiation

It seems that our daily activities are becoming somewhat predictable.

Our highlight of the day was meeting Connor's Chemo pal (a program sponsored by Children's Cancer Association). Connor's pal is named Nick and he brought a really cool toy bag full of fun toys hand picked for Connor. We played a game of Old Maid, and Connor colored a custom paint job on a race car craft project. Nick will be Connor's pal throughout his Chemo process. It's nice to have some someone break up the monotony of the day, and be a constant friendly face throughout the process.

The Oncologist had Connor take an X-ray to see if she could rule out anything that might be causing his back and tummy cramps. It's possible that he has some constipation from some of his medicines.

It was an extra long day at the hospital, but the ride home was peaceful with Connor looking out the window telling me about all the "Cloud Animals" he saw in the sky.

Some things that made me chuckle:

A Recap of Connor telling our favorite nurse that he could speak to animals.

Candace: "Really? that's awesome!! I need you to come to my house and talk to my cat! He lays on my head and licks my face while I'm trying to sleep".

Connor: "Well you see, it's really easy you just say meow for each length of the word"

Candace: "oh so if I want to say, "Stop licking me", I would say "Meow meowmeow meow"

Connor: "You got it!!!!"

We love Candace!! she SO understands kids (and mommy's and daddy's)

A Recap of Connor telling Dr. (Pirate Gold) Rose about his weekend

Dr. Rose "So what was the BEST thing you did this weekend?"

Connor "I got my H1N1 shot!!!"

Connor declared Dr. Rose the BEST DOCTOR EVER today.

Halfway through radiation!

Friday marked our halfway point with radiation. Connor will finish up on the 30th, and then we will have a much needed 4 week break before starting the maintenance phase of his Chemo.

Fortunately for us his 4 week break coinsides with Christmas yay !!!!

On Friday, Connor was able to get the H1N1 vaccine (thank you so much Nikki!!). He had a nice tutoring session with Miss Horn, and we enjoyed a nice time at the movies. Only in a small town can go to the movies and have there be only one other family besides yours in the theater.

Saturday I was able to visit with a friend, and we were able to do our weekly grocery shopping (along with everyone else lol). Connor's back has been hurting him a lot, but so far we are able to keep the pains at ease with Tylenol. We'll be meeting with an Oncologist tomorrow to discuss his pains.

Connor has lost about 99% of his hair. It's amazing how little it bothers him. Throughout this journey I've found it's actually me that needs the body armour to handle to the new stares and comments from strangers. Connor just waves and smiles.

Tonight was Catan night. It was long overdo. Pink next time Scott, PINK!!! Nikki was so sweet she dyed her hair for Connor. (Purple and red actually look really nice on her!).

Connor's new fundraiser website is complete. If you are interested in helping him raise money to purchase a DVD player for another child going through 30 days of radiation treatment, please check it out at: http://www.connorsfans.weebly.com/

The best part of the weekend: Cuddling up with Connor, listening to to the rain and reading fairy tales.

Something I'm interested in doing: Speaking to Dr. Kee (Connor's radiologist) to see if there is any new information from the Conference he went to.

On the road again .. earlier

We had our first "early" appointment yesterday. Connor is able to leave radiation about an hour sooner now that we have acquired the earlier appointment slot.

Yesterday was the last day for treating his whole head, and spine. Starting today he will get radiation for the tumor site only. We should see a decrease in some of the short term effects from the "Whole head and spine" treatment within a few weeks (Mostly upset stomach, and sore throat, back pain).


Yesterday was difficult on us, Connor has started to lose his hair. It seems to be more upsetting to mommy and daddy than him (thank goodness).

The side effects seem to be prominent on Wednesdays & Thursdays they subside Friday-Monday.

As of tomorrow we will be officially half way through radiation treatments.

Something I'm thankful for: Hard Boiled Eggs (Connor is loving them).

2nd round of a Chemo without a hitch

Connor had Chemo and Radiation on Monday (all went well), and radiation today (which also went well).

Connor brought Dr. Rose (one of his anaesthesiologists) some Almond Joys (his favorite candy), and has a marshmallow brain reserved for Dr. Kee (his radiologist) for when he returns next week from a Cancer conference.

The Oncologist we met with on Monday was very pleased with Connor's physical improvements since being released from the the hospital. He is now walking on his own, and for longer walks he is able to use his walker.

One of the other children doing radiation completed his last session today. His father is a tattoo artist and was very kind to give Connor some tattoo stencils that he can use to create his own "personalized" tattoos. Fortunately it's pretty quiet in the radiation office, but there is a 10 year old little girl who started her treatments yesterday. Although it is heartbreaking to see another child going through this, it is helpful for Connor to see he's not alone.

We took another trip to the Library today. I was pleased to see they have Children's DVD's. Connor picked up one for our morning travels.

Miss Horn came for tutoring. She brings such fun activities for Connor. His favorite so far is BINGO. The Monkey has been having a blast in class.

Connor hasn't been complaining of any radiation side effects this week. Last week he did get a sore throat from the treatment.

Tomorrow is the last day for radiating his whole head and spine. On Wednesday they will start radiating the tumor site only. We also will move up to the 1st morning spot (30 minutes earlier) starting tomorrow.

What touched my heart today: Connor telling me I'm as beautiful as the sun
What cracked me up today: Greg playing quiet riot on his phone to coax Connor up
post-Anaesthesia (the same music that Connor wakes up to at home when his alarm goes off lol).

oh sweet Sundays

We are really beginning to cherish our Sunday's. Our last day of the week to reconnect and refresh before our weekly radiation schedule resumes. We are on week 3 (of 6).

Connor had a great day today. Although he didn't have a huge appetite he was able to sample some different foods today, and didn't have any swallowing pain today.

Connor played some kick with his dad, paper airplanes, Lego's, Frisbee and totally dominated Mom at SORRY Sliders today. It was such a beautiful fall day today, clear blue sky crisp fall air.

I've added a guestbook to this site. Please feel free to leave messages for Connor and our family.

I hope everyone enjoyed Halloween.

The best part of Connor's day: His trip to Fred Meyer to check out all the new Christmas Toys.

The best part of our day: Connor giggling.

The Shadow ninja was on the prowl..

I have to the thank the weather folks for being wrong this year, NO RAIN ! In fact it was one of the nicer Halloween evenings.

Connor's Great Aunt Tammy came to visit yesterday (She finally made it after I gave her some not so great directions). It was great to see her, she's always a lot of fun, and makes us laugh.

Connor told her as she walked in the door "I'll give you a few minutes before I'll have you play games with me". She of course obliged. She was a great sport at Guess Who, Animal Top Trump and her all time favorite the WII.

We had about 15 kids or so (we don't have a very trick-or-treat friendly neighborhood, lots of hills, and a busy road with no sidewalks). The one's we did have were so excited! you could feel their trick or treat buzz radiating from their little bodies. I'm SO sad I missed Snow White (but I heard about her fabulous hair) and the Puppy (who walked right in lol) . I did get to visit with a cupcake and a Bee.

Connor the "Shadow Ninja" headed out around 6:30 and didn't return until 9:15. Last year Greg and Connor were out really late (trying to find the very last houses), there was an "unmanned" house with a bowl on the porch. Greg told him "It's late, go ahead and take the whole bowl", 2 seconds later Connor came running down the driveway with all the Candy and the Bowl!!!

He didn't capture any bowls this year, but he came back with the most loot he's ever had. He spent about a half an hour examining all his treasure. Handling each one with care, until he finally decided on one to eat, the marshmallow brain (how ironic! you take that brain!!!).

The Best part of the day: Seeing Connor looking forward to something extra special. Enjoying a special day, and reveling in his accomplishments.

We will miss: Our Company, she provided a much needed distraction.

Starting to notice some side effects from treatment

I definitely think the motto for Radiation should be "No Pain, No Gain".

Connor is starting to experience some side effects related to radiation. We are finishing our second week of treatment (with 4 more to go).

Some of the effects we have noticed in the last few days:

Fatigue: He has had less energy the last two days. He wants to sleep for at least 2 hours following treatment.

Low Blood Count: He gets his blood drawn every Monday for Chemo, and we were advised this was already low on Monday.

Sore Throat: He is receiving radiation to the spine so his throat, stomach etc. become exit points for the radiation. The doctor gave us a special rinse today which should provide some relief.

Loss of Appetite, Heightened sense of Smell, Metallic Taste: Eating continues to be a struggle. He is losing interest in some of his favorites. We are trying smaller meals (more often). We will be working with a nutricionist to help with these issues. As many of you know Connor has ALWAYS been a great eater, so this is new territory for us.

Muscle/Joint, Arm, Knee, Leg, and Head Pain: Most likely this can be attributed to the Chemo drug Vincristine that he started on Monday (Since it causes deep tissue and joint pain). But some of the discomfort can be attributed to the positioning in radiation as well.

We take it day by day. We try to stay educated on what we can expect, and be mentally prepared for what we can't control.

It was bit of a struggle to get Connor to go to radiation today, and I'm sure it won't be our last challenging day. Each time I consider something to be the "Worst", or "Most Challenging thing so far", they fade away, only to be replaced by the next event.

So we do our best, get creative and try something new.

That pirate has been visiting an awful lot Connor is up to $9.00 in gold coins !!!

Here's a photo of Connor's rockin tattoos. The Nurses get so excited to see his "daily" tattoo.



Today he added a Tikki Mask.







Some of the things we are looking forward to this weekend:
Halloween of course (stay tuned for photos of the shadow Ninja).

Aunt Tammy visiting for a few days, she always induces those great deep belly laughs.

Connor getting his port de-accessed so he can use up all the warm water in the shower :)

Breakthrough

We finally had a pleasant post Anaesthesia experience yesterday. Connor woke up gently, just like a regular morning wake up (thank goodness!). His new Anaesthesia is called Precedex.

We'll keep our finger's crossed that today delivers the same results.

Connor and I returned his Library books, and snagged a few more (he'd leave with 100 books if he could). He selected several from the Natural Science section yesterday. Rocks and Minerals, Dinosaurs, Big Cats and a few random fiction books.

We worked on some fine motor activities yesterday. Sallie sent him a Scratch Magic Kit. It's an awesome activity for fine motor skills.

I also wanted to thank everyone for the hats they have been sending. We haven't really noticed any major side effects, the Nausea Medicine(Zophran) is keeping his nausea at bay. His appetite has been a little suppressed, so we are offering his lots of "options".

We had a Monkey update from Miss Horn. They are taking very good care of him. The only places he hasn't gone are to recess and to lunch. Miss Horn said he waits in the Window sill at Recess so he can watch the class outside, and we waits in the sill at lunch with a banana. It sounds like his highlight was Music class where he played the tambourine.

(Did you find Sunshine in the radiation room the other day? You might need to expand the photo to see her).

I've also added a map to the blog, so we can see where all the Visitor's are from.

The best part of the day yesterday:

Connor: Going to the library

Mom & Dad: Having a calm wake-up

Strap on your body armour

We floated to the Radiation office yesterday. We had a huge deluge of rain yesterday morning.

Connor added a new tattoo to his collection (a flaming eyeball).

He was a champ getting his access tube placed, that kid amazes me.

Monday's take a little longer in the Radiation office. They do realignments and additional tests.

Yesterday's wake up from Anesthesia was quite alarming. In Radiation there are four Anaesthesiologists. They work together as a team to "personalize" your child's Anesthesia experience. Connor has generally been experiencing some emergence delirium post anaesthesia, but yesterday was out of control. Kicking, hitting, Screaming, trying to pull down the curtain, etc. After talking to a senior member of the team they are going to make some modifications to his Anesthesia combination. I guess we can return our body armour.

Many people have asked why Connor has to have Anaesthesia every day. Believe me, this was VERY alarming to me too. Due to placement of his tumor (Posterior), Connor must lay face down in a face mask for up to 15 minutes. There is a large amount of weight being placed on his face, and shoulders. In order for the radiation to be effective, there must be no movement during the treatment. So a combination of it being a completely uncomfortable position, and something that requires a child to be completely still leaves most children under the age of 10 requiring daily anaesthesia.

After our wake up battle we headed to lunch (at that point our child's personality had resumed his body). Connor enjoyed walking around the Children's Garden with his walker, they have it decorated for fall.

Next we headed up to Children's Oncology, for a Consultation about Chemo, and the nurse administered Connor's first dose of Chemo (Vincristine). That was a snap. The doctor said he really shouldn't experience many side effects from the Vincristine, maybe some temporary tingling in his hands or feet. His white blood counts we a little low (most likely from Radiation), so we were also advised to keep him out of groups. I have my bubble on order lol ......

We also met with Casey from the Children's Cancer Association. They do great things to Support children and families effected by Cancer. They offer a Chemo Pals program where the children are matched with a mentor who will spend time with your child in the clinic, hospital or even at home playing games, reading, doing art or whatever interests your child has. They also offer a caring cabin for families to stay at on the coast, for a little R&R.

We were at the hospital for about 7 hours, so all in all it was a long day at the Hospital. Our big discovery Valet Parking!

A funny thing Connor said yesterday: These are great "Chickaladas" !- Translation: These are great Chicken Enchiladas!

The best thing for Connor yesterday: Acquiring 2 Star Wars stickers to add to his walker !!

Green spikes

We were able to accomplish all of our errands today.

First on the agenda Connor got a shower. He can only have a sponge bath during the week when his port is accessed. He loved it. He sat under the rain shower until he used ALL of the hot water.

We did painting, and played some video games.

Connor got his haircut today. Short on the sides, with spikes on the top. For a special touch he added green spike gel.

We took his new walker with us for our errands. He's such a pro, he has it mastered.

We went to Safeway and Connor got his Physical therapy work out by going up and down the aisles. He loves the security, and the freedom.

The best part of the day: Connor designing his pumpkin face

Connor's favorite part of his day: "The Jack-o-lanterns of course mom."

Treatments 3 & 4 down... onto #5

We are starting to get into our Radiation Treatment routine.

7:00-7:15 Wake Connor, Administer anti-nausea medicine

7:30 Take off to the Hospital

8:05 Arrive at Radiation Building, Assume our regular position in the waiting area, watch TV, read magazines, play jacks, card games and inspect the web spinning done by the spider that dwells outside the window.

8:15 Connor gets his vitals checked

8:30ish We are taken back to the radiation room, Connor assumes his regular position on his foam "Body form" , tummy down, and he starts anaesthesia.

8:40 Greg and I get a cup of waiting room coffee, he takes his black, I load mine with sugary sweetness and we sit and wait. We re-assemble the same puzzle that his been on the waiting room table since last week, browse expired magazines, make follow up phone calls about his equipment, play cell phone games, and access the Internet on the complimentary WIFI.

10:15 we are usually called to the recovery area, we wait for Connor to wake up. We are learning to let him sleep as LONG as possible.

11:00 He is not a happy camper when he wakes. He must get chilled because requests several warm blankets (usually at least 3).

11:45 We leave, grab a bite to eat on the way home.

The nurses and doctor's have been so kind in the office. On Wednesday the anesthesiologist asked Connor if he saw the pirate in the office, Connor told him "no!", and the Doctor handed him three golden coins, Connor loves pirates and thought that was the greatest!

Connor is celebrating each radiation treatment with a rub-on tattoo! The nurses ask to see his new tattoos everyday. By the end of treatment he will look like a rock star!

Miss Horn came to Tutor Connor on Thursday and Friday. He was a little anxious before she got here, but she is really good with him. After she left he said, "That wasn't too bad mom".

Connor received his walker today, we are excited that he will be able to walk longer distances now that he has support.

He wants to raise money to purchase a DVD player for other children who have to travel to radiation treatment (Tom and Jerry have kept him going all week long on our commute). Connor wants to sell cards that he is painting (look for more to follow).

Big Plans this weekend:

Get Connor a haircut

Carve our Pumpkins

Give Connor a shower (since his port has been de-accessed)

Best part of the day:

Connor telling me "You and Dad are the best people I know"

Something funny on Wednesday

The nurse asked Connor if he wanted to select something from the Toy bin, Connor said, "Sure, I'll take anything as long as it doesn't have bows".

Thanks for all the cards and gifts, Connor LOVES getting mail, it makes his day a little more exciting!

Yay for Nausea medicine !!

Connor was a trooper today. Told jokes with the Anesthesiologist, climbed up on his foam body "mold" and did his thing.

We were done a lot sooner today, however we let him sleep off the anesthesia a lot longer (hoping to reduce the post anesthesia crankiness).

I wanted to tell you about the "There's a Monkey in my chair" program. The URL is: http://www.theresamonkeyinmychair.org/.

It's a program created by the Love, Chloe foundation. Children who have been diagnosed with a serious illness can send away for their own kit. The kit comes with a HUGE stuffed monkey that sits at your child's desk (when they can't attend school). It comes with a Journal, a Backpack, a camera , a photo album, pencils, a button (that your child can wear), a smaller monkey, a storybook that the teacher can read, and it's all contained in a nice duffel bag.

The class can take the monkey with them to their different activities, write in the Journal about what the Monkey did that day, take pictures, and send cards, pictures and letters home to your child in the backpack. It's a terrific way for your child to stay connected to their school and friends. I thought it was so clever.

Well Connor's Monkey arrived in the mail yesterday !! I'm soooo excited. Look for photos of the Monkey soon.

I have a shout out to all the cooks out there!! If you have any casserole recipes (meals I can make on the weekends/freeze and pop in the oven) I'd love to hear from you! I know I can scour the Internet, however I want something tried and true. A recipe you actually use (and your family will eat lol). So send them my way lilmissy76@aol.com

The best part of today: The Nausea medicine worked

The Corniest Joke I heard today: Why didn't the Skeleton Cross the road? Because he didn't have the guts.

1 down 29 more to go!

Connor had his 1st radiation treatment today. All went well.

We started a little later than expected. We were told the 1st treatment always takes a little longer since they need to adjust him several times to make sure they are completely accurate. We were there from 8-1130

The numbing cream was heaven sent. Connor didn't even feel his port being accessed today. He didn't even flinch. The radiation group leaves his port accessed until Friday, so he only has to get "poked" once a week.

In the interim we have to be careful about not getting it wet. He has a little tube (similar to an IV) that sticks out for access.

Again Connor woke up in a terrible mood from Anesthesia. The Doctor told us that should get better as he does it a few times (He will be under for less time, and his body will accept it better).

After the Anesthesia wore off we got a bite to eat and headed home. Connor was feeling up for School, so we popped in. Unfortunately Connor got sick at School (so sorry miss Horn). His teacher was so gracious. I was a little embarrassed :(

We're going to try a nausea drug tomorrow before treatment to hopefully curb his nausea.

We were told side effects don't usually start appearing until 2 1/2-3 weeks .

The best part of today: Playing hit the deck with Connor (the new game he got from the radiology toy chest)

Time to prepare for the tooth fairy ..

Connor decided rather than losing one tooth, he would lose two today. So, "the tooth fairy will owe him double", he says.

We picked out our pumpkins today. It took Connor an extra long time to find just the right one. He already has an idea about what kind of face he wants to carve on it.

Greg pulled out the decorations and I started to decorate the house a little. Holiday decorations were always a big deal at my house growing up. My mom always made each Holiday special with cute little vignette's all over the house. It's extra important to me that I make each one of these Holiday's special for Connor. A little something special to look forward to.

Connor starts his radiation treatment tomorrow. He's mostly thankful that he doesn't have to spend the night.

I'm so proud of how well he walking on his own. This morning he woke up, got out of bed, used the potty and came into the living room ALL BY HIMSELF.

The best part of today: Hearing about Connor's dream last night, where everything he wished for came true.

The Big debate: While watching Return of the Dragon

Connor to Greg: "Dad who do you want to be, Bruce Lee or Chuck Norris?"

Greg: "I'm not sure"

Connor: "I want to be Bruce Lee, He's not as hairy"

I like days like today ...

I like days like today where there is nothing to report. Just a regular fun, relaxing day for us.

Connor spent a lot of time playing with his Hot Wheels today. He set up different jumps, and configurations. He tried several different "Models" to see which ones went the fastest. Those that didn't make it went into the "Crash" pile.

He is really getting around on his own pretty well. He's definitely getting more confident about walking on his own without holding onto anything.

Connor has a loose tooth. I have a feeling the "Tooth Fairy" may visit him on Monday while he's under anesthesia. They don't like to take the chance with loose teeth.

Our friends came over and we enjoyed a great meal (thanks Nikki) yummy fried chicken, mashed potatoes & gravy, biscuits & Honey (ala Chrissy and Josh) and Corn. It was totally a comfort meal. The mommy's and daddy's played Catan, and Connor and Connor played games too. That darn Scott won again.

The best thing about today: Enjoying time with friends, appreciating good laughs

Is everyone ready for Halloween? It is really sneaking up on me. I don't even have pumpkins yet yikes!!!!!

Happy news

I just wanted to let you know that we received great news today. No cancer cells were detected in Connor's spinal column, and there is no re-growth on the MRI.

Thank you for all your prayers and Happy thoughts.

I am enjoying the moment.

Off to School we go

Even though we were only able to stay for part of it, the Star Wars concert was great. Anytime you have a live Orchestra for anything it is always extra exciting. Such talent. There were these giant flame throwers on stage (I don't know if the people in the front rows have any eyebrows left), we were in the 18th row and could feel the heat.

Connor was feeling a little under the weather last night, and this morning. He had a bit of a headache which could be due to the lumbar puncture. His headache was making him nauseous, which in turn was making the headache worse when he got sick.. it was a bit of a vicious cycle. He was finally able to keep his nausea medicine down, and felt much better for the rest of the day.

Connor was able to join his class this afternoon. The kids seemed so excited to see him. We played capture the flag (boy, mom was exhausted from pushing him around in his chair for that lol!!), and he was able to do a coloring activity in class. It really cemented for me how important it's going to be for him to be in school with his friends as much as possible. He was so energized after class.

On the way out of School he said, "Mom isn't it so nice that I have such nice friends, and a nice teacher?"

They made him some beautiful cards and gave him some knit hats with the School logo on them (So cool !!!) for his collection.

Connor was very determined to walk on his own today. He's was able to take about 10-15 steps on his own before needing to hold onto anything. I am very proud of him. We met friends for dinner tonight and Connor chose not to use his wheel chair. He wanted to walk instead.

The best part of today: Seeing Connor so excited to see his friends, and his friends so excited to see him

Tomorrow: We get the results of the MRI and Spinal late tomorrow afternoon

What made me grumble today: Getting the property tax bill and seeing it go up by 13% (OUCH)

What a long day

We finally made it back home. We were at the hospital all day today.

Connor had his hearing test (which was perfect, now I know he really CAN hear me!), then his port placement and Spinal. He did great! The nurses do a great job of easing his anxiety about surgery.

The port placement went really fast, only about 45 minutes, and another 30 for the spinal. However, the recovery from anesthesia took quite a long time. Connor just wanted to sleep. Just like yesterday, He was VERY cranky when he woke up. He's like a drunk sailor (minus the foul language) slurring his words, bossy, pointing his finger, and yelling.. it is quite interesting.

We will have a follow up on Thursday or Friday to find out the results of the Spinal, and the MRI from yesterday.

Tomorrow is our big day. We are taking Connor to see Star Wars In Concert with our friends tomorrow night. He is such a big Star Wars fan !

I wanted to thank everyone for all the kind comments they leave on this blog. Although I haven't responded to them all, I want you to know we spend the evenings checking them and they bring such smiles to our faces.

The best part of our day: Kicking off our shoes.

Connor says the best part of his day was: Getting his surgery so he doesn't have to worry about it anymore.

You know you have been in the hospital too long when: You know which waiting room has the best creamer.

Meet Sunshine...

I am so fortunate to have some younger fans keeping up on Connor's progress. It means the world to me that his friends want to follow his journey, so I wanted to include them with a special game of "I Spy Sunshine".

Now you may not have met Sunshine yet but you will know him by the end of Connor's Journey.

Sunshine is Connor's stuffed puppy. Connor adopted him the day he went in for surgery. Sunshine has gone everywhere with Connor. Sunshine went into Surgery, Slept with him, went to Physical Therapy, was with him for all the scary parts and the kind of fun stuff too (yay hospital BINGO !).

Once and a while I will include a photo of Connor, and you will need to find Sunshine. I was easy on you today, next time may not be so easy.

Today Connor (and Sunshine) visited the radiation office for the first time. Connor's doctor talked about Treatment, and how he had to be fitted for a special mask. The mask will make sure that his head stays perfectly still during his treatment. Connor thought this was COOL !

After he was fitted for his custom mask, Connor had an MRI, and CT done, to make sure the Tumor wasn't growing back. Unfortunately we won't know for a few days what these results are.

Tomorrow Connor will have Surgery. He will have a Spinal Tap (to see if there are cancer cells in his spinal fluid), and a port placed for Chemo. This port will provide Connor with a relatively painless process to draw blood, receive Treatments, and medicines.

We are asking for lots of good thoughts, and prayers this week. We are hoping the Tumor hasn't grown again, and of course we are hoping there are no cancer cells in the spinal fluid.

The best part of the day: Connor asking if he could have another party since he had an MRI today.

What tickled me to the bone: I cracked myself up for really no reason. I got myself giggling so hard I had tears coming down my cheeks.

What did I appreciate today? Greg using his sweet kind daddy voice to give Connor hope that tomorrow will be just fine.

Taking time to live in the now..

I woke up thinking about this so it must be profound enough to write about (lol).

I'm sure I'll have many revelalations as Connor embarks on his journey, but one is to live life in the now.

Take a few minutes a day to revel in whatever is in front of you. Do you feel your childs excitement deep in your soul? Did you smell that rose as if it were the first time? Do you appreciate that crisp Autmun air and the changing leaves? or that last bee out gathering pollen? Did you really listen to the sound of your child's laugh today?

As we all rush around it's so easy to get caught up in other day to day things. We spend time dreaming of our future, our past, and miss a few of those things right in front of us.

What did you teach your child today? Kindness, and Compassion? Did you give your child hope today?

Did you tell your spouse or friend what you appreciated about them today? Did you ask your child what the best part of their day was ?

Living in the now means connecting to people. Stepping away from our Computer's, Email, Text Messages and connecting with people around us. Offering our help to a neighbor, or introducing ourselves to them for the first time. Smiling to a stranger in passing. Telling people you appreciate them in the moment. Don't wait.

So you know, I appreciate YOU! Taking a small amount of your day to come here, and read this.

There is such kindness in the world..

We had such a beautiful party today. The weather held out, there were tons of people, good food and lots of kids. More than anything we were overwhelmed with the kindness of people.

We couldn't have visualized it any better. Kids were playing, and being kids. Connor was happy, and felt normal for the day. He got so many nice cards, and gifts, and well wishes.

After the party he said, "Mom, that was a great party, it was so nice to see everyone." And it was.

I wanted to take a few minutes to answer some of the questions we have been asked a lot, and I haven't posted:

1. How did you know Connor had a tumor? Connor had been extra clumsy, seeming to fall over his own feet. This wasn't too unusual, being a 6 year old. After his Soccer game, he was at home and grabbed his head and was crying that it hurt. This was unusual so we took him to the ER. The CT scan revealed the Tumor. The doctor's said we had caught it early, probably within a week.

2. When will he start Treatment and how long will it last ? Connor starts Radiation & Chemo on the 19th. The radiation will be 5 days a week for 6 weeks, and the Chemo will be once week for 44 weeks.

3. Will he go to school during this time? If he's up to it yes. We would love him to go to school even if it's just for socialization. The treatment could make him tired. His teacher will be tutoring him which is so nice.

4. Has he had any complications from the surgery ? Connor is still working on regaining his balance, and he has some weakness in his left arm. Each day he makes more strides. He will be moving from a wheel chair to a walker. Today he walked from his room to he living room, just using the walls for support. We will also be taking him to an opthamologist to strengthen his eyes.

5. What can we get Connor and You guys? We will be starting Connor a hat Collection. So if there is a special hat that would remind him of you it would be great. He also loves getting cards and letters. We also love the cards, and emails (and special comments on this blog). Just knowing we are in your thoughts has been the best medicine for us. For those of you who want to send a gift, Gas Cards would be much appreciated.

6. What can I do for you? This has been such a hard question. Not because we don't need the help, but because we just don't know yet. We are just starting this journey and I'm sure things will come up. Keeping in contact is on the top of our list. Know that we appreciate your offers even if we haven't called on you YET! Keep us in your thoughts and prayers.

The Best thing about today?: The party of course. The people, The kind words, The Compassion.
What made me smile extra big?: Seeing all my little girls that I watch. I love them so much, and will miss them so much.
What made me proud?: Connor breaking his Tae Kwon Do Board. He was so proud.

I want to hear from you! What was the best part of your day?

I wanted to thank everyone for coming today. Nikki and Julie thanks or all the extra help (and the PT for Connor !).

Kindness:

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.
-Leo Buscaglia