Saturday, October 17, 2009

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!!!!!

Friday, October 16, 2009

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.

Thursday, October 15, 2009

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)

Tuesday, October 13, 2009

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.


Monday, October 12, 2009

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.




Sunday, October 11, 2009

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