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

A Thursday like any other

Yesterday really felt like a "normal" day for us. Nothing too exciting (yay!!). We are really enjoying this fall weather. The trees are so beautiful.


We are having a "Welcome home from surgery" party on Sunday. Connor is sooo excited (and so are we) to see our great friends. We have been overwhelmed by the kindness of the people here.

We spent a little time talking to Connor about some of the procedures that are going to take place. His biggest concern was if he was going to be able to come home. He was relieved our visits were just day trips.

We talked some more about the side effects of the medicine he'll be getting, his biggest concern is losing his hair of course. We are going to start a hat and hoodie collection for him he was pretty jazzed about that.

Connor's teacher is talking to her class about Cancer. I can't express how much that relieves me. One of my concerns is social acceptance by his peers. We feel really fortunate that he has such a great teacher.

We went out for a special evening last night. We enjoyed some time at Chuckee Cheese and dinner out. Connor found a way to play all his favorite games.

The best part of today: watching Connor play Skee-Ball 10 times.

Oh how kids will play..

It was such a beautiful day today. Connor and I enjoyed our morning outside playing all our usual fun games. Today he took a few spins around the patio on the giant trike.

We played some board games, an I Spy computer game, and shared lots of giggles.

Our friends Nikki, Bryan (AKA Scott) and Connor came to visit. It was so nice ! In fact it was pretty awesome. They always make us laugh. Connor & Connor played games, and shared some really good laughs. Connor was so happy tonight, he really enjoyed spending some time with his friend.

The best part of today: Connor playing and laughing with his friend

Escaping

We escaped from the Hospital today. Connor is scheduled for several pre-treatment procedures on Monday and Tuesday including: MRI, CT, Spinal tap (to see if there are any cancer cells in his spine), Port Placement, and a hearing test.

With his Radiation/Chemo starting on the 19th we decided it would be best to provide him with a few days of rest, so we left Therapy a few days early. Rest assured he will be getting plenty of home "Therapy" which includes tickles, hugs and kisses.

The first thing he wanted to do was get something to eat, unfortunately he hasn't had much of an appetite in the hospital.

The Dr. who released us caught us off guard today. He asked us where we were from. We usually get the same response "Where is Scappoose?", but today the Dr. played air banjo while humming the theme music to Deliverance. He told us he had friends "Out there.." that they "Shoot Guns off their front porch" and "have bats living in their play structure". He MUST have the wrong place, that must be a different Scappoose.

The best part of the day: Arriving back home
What I'm looking forward to tonight: Sleeping in my own bed

Monday Madness

Today's Therapy schedule started out with a short trip down the hall with a walker. Connor's legs were much straighter today and he seemed to have a lot more control. The walker he used today had stationary wheels and he was able to walk in a straight line (as opposed to weaving back and forth down the hall with the free-style wheels). It's so exciting for me to see him have some control over his mobility, since he hasn't had much control of things lately.

He played some more UNO, and Guess Who. He plays all of these games standing, sitting or kneeling. He also practiced bending down and picking things up.

The highlight of his day was building a Solar System puzzle. For those of you who don't know, puzzles can be a bit of a challenge in our household. Connor is cross dominant (he prefers one hand for some tasks, and the opposite for others) so tasks involving both hands being used at the same time can be a bit of a challenge. His therapist was fabulous and totally dissected the process of a putting a large puzzle together.

Instead of dumping out a box of pieces and saying "ok put it together", she provided these steps:

Steps for putting together a puzzle without frustration
1. Sort outside pieces from inside pieces
2. Take outside pieces and use box to determine if they belong on the Top, Bottom, left or right (separate into these four categories)
3. Put together the Top, then Right, then Bottom and then Left outside edges and connect them
4. fill in center pieces using the box as a guide (pay close attention to "Inny" and "Outy" pieces)

Now for people who can put together puzzles very easily it's all common sense, but for Connor these four steps were all he needed to sucessfully complete the puzzle and avoid frustration or quitting. He was so proud of his accomplishment, and I can say probably for the first time, he actually enjoyed doing a puzzle.

Tonight was mystery meat again, very scary. He opted for a less nutricious meal of a Peach smoothie with whip cream.

I can't wait to share a photo of "Goldman" he is so proud of his mask. He's found a new found appreciation for art here. He loves all the acrylic paints, and different types of paintbrushes.

What made me extra happy today: Connor's teacher has offered to be his tutor. I'm in awe of her generosity to help him stay connected with his peers.

The best part of today: Connor was asked if he had a "Girlfriend", his reply " NOOOOOOOOOOOO WAAAAAAAAAAAAAAY"

Saturday & Sunday..a little Freedom

Oh how nice it was to be able to sleep in our own beds! We were able to leave the hospital around noon yesterday.

We spent some time in the backyard again enjoying the sun. We took a quick trip out to Fred Meyer's, but as you can probably imagine, Connor just really wants to relax at home. Every time we come home I can see his whole body relax.

We only have to "live" at the hospital for 5 more days during Physical Therapy, then we will just be "visitors". I know I've been there too long when I know "short-cuts".

Connor was craving fish sticks so that's what we had f0r dinner. It has been a little challenging to get him to eat some of the hospital food (Gee I don't know why?! lol).

I've changed the "Comment" settings (Sorry didn't know I could do that!) so anyone can comment now, even without a google account (there you go mom comment away!!!!!!!)

The best part of the weekend so far: Enjoying some normalcy.

Thank goodness it's friday

Connor played a lot of UNO today. He played standing, sitting, and kneeling. He played basketball, batted balloons, crawled for beanbags, used the walker, went to "hospital" school and had group speech Therapy with a 5 year old that has the same condition as him.

It was nice to hear my son was empathetic with the other little boy who was crying, and scared and wanting his dad. They played cars, and it was nice for Connor to finally interact with another child.

Connor had to be extra tough today, he had to have his staples removed and he had to have his "Chest Stickers" removed (he hates removing tape and stickers and band-aids with a passion). He did super, hardly any tears!

Daddy came to spend the night tonight which was a highlight for Connor. We were able to go out to Applebees for a nice dinner. After Dinner Connor and daddy popped popcorn and watched the Star Wars The Clone Wars cartoon.

Something funny: The "Hospital" Teacher asked Connor if he knew the difference between a circle and an Oval (Connor can identify a circle and oval), but he was having trouble coming up with the verbiage to describe the "difference" between the two. So the teacher explained that an Egg was the shape of an Oval, and an Orange was a shape of a Circle. Then she asked "What is the difference between an egg and an Orange?" Connor's reply "An Egg is White".

That was the end of that discussion. She thought that was hilarious.

I'm thankful: Connor was extra brave today

Thursday What a Blur......

Yesterday was so busy for Connor (but good). He played board games while sitting and kneeling, hit balloons, threw beanbags, went to "Hospital School", and was fitted for a walker. BUT THE BEST PART was that he got to ride a trike outside in the garden. I so wish I could have been down there to see that (instead of talking to the radiologist), he came back soo excited to share, so proud of himself. Since he hasn't had much "control" over his own mobility, I'm sure it was exhilarating.

Meeting with the radiologist was pretty intense. He is one of the bearers of bad news. He came to tell me about all the not so great side effects of Radiation: Hair Loss, Pituitary gland damage, Brain Damage, being Sterile, Smaller Skull, and Stunted growth, eventual hearing loss.

The standard treatment is to radiate the site where the tumor was removed, then radiate the rest of the brain to kill any cancerous cells that may not have grown yet, and then radiate the spine to eliminate any cancerous cells that may be there.

Then if that isn't enough for you, as a parent you get to choose: The standard treatment above or you can participate in a "trial" that's intended to "reduce the side effects of radiation". With the trial: the same amount of radiation is applied to the site, but LESS to the rest of the brain and spine. But the kicker is: if it wasn't enough you CANNOT repeat radiation treatment to that area again.

A positive that came from this meeting with "Dr. Doom" was that Connor's physical strength was good, he told me he was a 4 out of 5 (5 being full strength).

Connor had Art Therapy which really excited him. Imagine an Art Room with anything you wanted to do! Clay, painting, Collage, Coloring , ANYTHING!. His therapist was so awesome. She told him that he could talk to her about "anything", didn't even have to be art, he was so comfortable with her. He decided to paint a mask. She told him he could paint things on the inside that maybe he didn't want anyone to see, and paint what he wanted to share on the outside. He used lots of colors, and lots of different types of brushes. He loved using gold and told her he wanted to call his mask "Gold Man". She asked Connor if "Gold Man" had any special powers, he said yeah "He can eliminate bad guys and fly".

Greg and My friend Nikki came to visit (it was nice being to chat with someone not wearing scrubs or a lab coat), she came with us to the Group T-shirt painting activity and lent her artistic talent to Connor's shirt, and we had a "delicious" meal downstairs.

Greg gets to stay the night tonight (yay!!!!! it's hard being away from him) and then we get to go home for a short visit after Connor's last session on Saturday.

It doesn't surprise me that: The batteries in Connor's hulk gloves have already died because of too much use.

It was funny when: The Art Therapist told Connor if he could listen to music in there, and he asked if she had "Quiet Riot".

Here's to another day of flying and fighting evil.

Workout Wednesday

The therapists kept Connor very busy today. He played board games, threw bean bags, practiced kneeling,and crawling and walking with a walker.

Seeing that one of his goals is to walk with a walker (at minimum) before he can leave, and he's doing it the first day, I'd say that's great progress.

Today was BINGO night and Connor won twice!!! yay!!! He won a lego airplane, and these giant HULK fist gloves that make HULK sounds. He is soooo in love with those.

Tomorrow he has a full schedule, Gym, PT and OT, Speech, School, Art Therapy, Neuropsych and Group Therapy.

He also is wearing a patch to help strengthen his left eye, which the therapist customized by putting a dinosaur sticker on it. He gets so much positive attention from his "cool" patch he just loves it.

He's starting a reward system tomorrow which he excited about too.

He found a new game that he loves "Guess Who", he is sooo addicted to it.

What put a smile on my face today: Connor being so proud of his accomplishments

A workout for Connor

Today Connor met with his Therapists. I was so glad we took a few days off to take a little break from the Hospital. He came back with a much better attitude than what he left with.

I was impressed with the Therapists he had this morning, they relieved his concerns about this stay being "painful". They are making this a "fun" experience with play therapy and exercises. It was also nice that they took a lot of time asking me questions about his interests so that they could personalize the therapy.

They provide us with a daily schedule so that we can use the Free time to our liking. Tomorrow he will meet with physical therapists, Occupational therapists, Speech Therapists and he will have 30 minutes of "School".

They really provide a lot of great activities for the Children here. There is a child life liaison, (we call her the toy lady) who you can ask for any type of toy and she brings it. For Connor's request of "Knights and Castles" he received a bounty of a Lego castle set, a bag of knights, a Playmobil Knight and Dragon, a moon sand build your own castle set, and a pink princess castle (which he quickly passed on).

Hollywood Video sponsors "Tuesday video night", where we get to see a new video, and have refreshments.
Tomorrow is BINGO night (our personal favorite) where everyone is a winner.
(He may not want to leave).

We were informed today that there is a 3rd child being treated for a Medulloblastoma (the same type of tumor Connor had removed) this week. I'm hoping Connor will get to make some new friendships with these young children during his therapy.

The Physicians seem very hopeful that he will do very well with his Therapy. He has lots of physical strength and they will focus on improving his balance.

That kid is pretty smart. The speech therapist said "Point to your nose and point to me", so he points to his nose with his index finger, and uses his pinky to point to her. "Oh no, she said, I wanted you to point to your nose and THEN point to me", "Oh that's not what you said", he said. (I think he passed the "follows directions" portion of the interview)

So it was a good first day, and he's looking forward to playing tomorrow, there isn't much more I could ask for.

Best part of the day: Seeing my son trust

A day of normalcy

After a whirlwind week, we settled into a day of normalcy.

Even if it was just for one day it was nice. We played outside did some more homemade therapy (threw bean bags, tossed and kicked balls, did some puzzles and played games).

Connor played a computer game with his dad (a personal favorite of his), and right now he is cracking up watching funniest home videos (another personal favorite). Oh how I love his laugh.

We took a little trip to see his teacher after school today. The students in Miss Horn's class made a beautiful poster for Connor, and he will proudly hang it in his room at the hospital this week.

Connor asked if he could take pictures of his therapy so he can show his friends what "he has been up to" (it sounds like a scrapbook in the making).

Tonight we will be busy packing for our stay, and we're looking forward to the therapy, and meeting new people.

Many people have asked for our address to send cards and well wishes so I wanted to post it here:
Connor Solomon
52988 NW EJ Smith Rd
Scappoose OR 97056


What amazed me today: The kindness and compassion of young children sending kind thoughts to a friend in need.

What a Sunny Sunday

We spent a lot of time outside today enjoying the beautiful sunshine. I think the fresh breeze and warm sun felt good on Connor's body.

He threw bean bags and balls, he practiced kicking and writing his name. He was so determined today, excited to try things, and he had a great sense of humor about everything.

It really is amazing to see more and more improvement everyday.

We all layed down on the grass taking it all in, it was nice to be together enjoying each other (the most important thing).

Connor was adamant about going to Pizza (he even had a request of BBQ chicken a pineapple), and calling his friend to come. He wanted to show his friend that he was OK, and wanted to brag about his battle scars.

He is excited about starting physical therapy, and the thought of making some new friends. There will be another boy close to Connor's age participating in therapy who had the same type of tumor removed last weekend, it will be nice if they can help support eachother through this process.

The best part of today: Laying in the sun, watching the clouds

Some R&R

The Hospital released Connor yesterday so that he could take a few days for rest and relaxation. We were all getting a little couped up in the Hospital and it was so nice to come home to something familiar.

Our stay at home will be short one, as Connor and I will be going back to Emanuel for some inpatient physical therapy. He has some weakness on his left side, his neck is very stiff and he needs to gain strength in his legs, but for just having Surgery on Monday we think he is doing just great. He's a real trouper pushing through the pain. Connor and I will stay overnight for up to two weeks.

The plan is to have him as strong as he can be (both physically and mentally) before he starts treatment.

I want to thank all of you who have offered help through this, we are so thankful for the wonderful family and friends, and friends of family and friends that have reached out to us. We are so thankful and humbled. As we adjust to our new "normal" over the next year we will certainly be taking you up on your generous offers.

The Best Part of Today: Hearing Connor Laugh, and Watching him smile