Wednesday, September 5, 2012

Childhood awareness month..

I wanted to take a moment to remind everyone that September is National Childhood Cancer awareness month.

Unfortunately Cancer is the leading cause of death by disease in children under the age of 15 in the United States.

How can you help raise awareness? There is a wonderful list of ideas on Alex's Lemondade Stand site check it out!

If you are looking to donate to local/National groups, here are a few of our recommendations (in no particular order).

Monkey in my Chair

CCA- Children's Cancer Association (Chemo Pal Program-Volunteer!, Caring Cabin)

 Make a Wish


Wednesday, January 18, 2012

Happy New Year !! ... a little late of course

Hodgepodge update: All is well in the Solomon household. We drove to California this Christmas. The drive was beautiful (we lucked out with the traveling weather). All of Connor's follow-up's have been clear (super yay !!). He's been feeling well. He has some new challenges with a low Thyroid, and low Growth hormone (both side effects from treatment).
We had our first snowfall this year. Here are some photos.
Greg is a champion snowball maker (being from MN and all.. show off!)
Connor before he pelted me with snowballs (look how innocent he looks lol!)
Let the snowball fight commence!
Sparky the snow dog!
Here's wishing everyone a very happy 2012!

Monday, April 25, 2011

Changes abound ...

Spring 2011 has been a blur. Even with the unpredictability of this crazy weather, change is constant. The Daffodils and Tulips are blooming right on course.

I have to slow down once and a while and take note. Life is sometimes a blur, and with Connor's increased energy our lives continue to change.

Connor participated in swimming lessons for two weeks with his school. It was such a wonderful experience for him. It meant more than just learning to roll onto his back, or open his eyes in the water. He was able to be free, he could stretch and move, without having to worry about his balance.

Connor has surgery this Thursday to remove his port. Throughout this process I've taken that port for granted. It's behind the scenes doing all the dirty work. Delivering drugs to my kiddo, providing easy access for pain medications and anaesthesia, and allowing for relatively pain free blood draws. Having it has been a huge part of this process. Removing it comes with mixed feelings. It's a bit like removing training wheels from a bike. Are you sure he'll be o.k with out them? ..But he's needed them this whole time.. What is it like without them?..

Connor's hair is coming back in full force. Eye lashes, Leg Hair, neck hair. I look at him today, and hardlyremember what he looked like yesterday. I come back to this site and see pictures that were taken just a few months ago, and I'm in amazement with his transformation in such a short time.

His last Therapy visit went really well. The last few years we've been fighting just to maintain his strength, and this was the first visit that we are gaining the upper hand and actually seeing improvement. It's a long slow process but we have hope.

Spring is bringing changes to Connor's outlook.. in the form of new glasses!! He's so excited. (I've never met a kid so excited about getting glasses, but he's wanted to have glasses "like Mommy and Daddy" since he was little, so I shouldn't be too surprised).

Spring has brought a lot of changes in our lives, and I am hopeful for continued growth in this Summer.

Thursday, March 24, 2011

Time flies when you are having fun.

Here is a current photo of Connor (It may be time for a Haircut soon!!).

His body is starting to spring back from the Chemotherapy. He's a lot more confident lately (moves around the house a lot more without assistance, lets the dog out, and sets the table for dinner).

His transformation is amazing to be a part of. Every day I see him try new things. Things that might be meaningless to someone else, like bending over to pick up something that has fallen on the floor, but to me seem miraculous. All the "small" sucesses give us reason to celebrate.

With Connor's counts finally up he's been able to go to "Thursday Community Day" at School. Connor has been attending a charter school this year SCFS. In this public school option the parents serve as "learning" coaches and teach the children at home (with curriculum we receive from the school). On Monday Connor meets with his homeroom Teacher for tutoring, and on Thursday all the kids go to the school for "Community Day". Community day is what most people visualize as "normal school", kids in the classroom being taught by a teacher. There are some differences with SCFS, one being Connors' class is blended with children in 1st-3rd grade.

The kids in Connor's class were so welcomming. He had a blast playing basketball, and participating in class, he has made a lot of new friends (which he always seems to do so freely). I can see in "classroom" setting some of the challenges he faces, time will tell if they will be temporary or permanant. One thing that continues to be highlighted is his resiliency.

This week is Spring break for him, so he was asked to write about what he'd be doing during his time off, or what he woud "want" to do if he could go anywhere/do anything he wanted. Connor's response ... "I'd like to travel to Hawaii (Hey me too !!!!!!) and play on the beach (oh that's sounds nice...) and swim with the SHARKS" (... oh .. hmm .. nope I'll pass on that one).

Our Spring break has been better than a trip to Hawaii, because Auntie Mallory came to visit. Her contagious laugh and sweet disposition is better than any beach in paradise. Boy how I've missed being around family (can't wait to soak up some more of them in May).

We took Mallory to see downtown Portland and went to the Art Museum (it was fabulous). It was perfect timing as Connor was upset with his last "art project" he made at school. He felt "It was the worst one in his class". After talking with him, It made me wonder what great works of Art would have been crumpled up and thrown away if Monet or Picasso had compared their work to their "classmates". After visiting the Portland Art Museum, I think he had a new appreciation of "What Art is" because after we came home he sat at the table to try out his new watercolor pencils and page after page, he was inspired to create..

Saturday, February 19, 2011

Preview of Connor's make a wish

Still have lots of photos to go through. Connor had such a great time in Florida.

Connor's Make a Wish Trip on PhotoPeach

Wednesday, February 2, 2011

Clean as a whistle

MRI scans are clear. The next one is in 3 months, followed by surgery to remove Connor's port.
His foot doesn't have any fractures (just swelling). Yay !!!!! Thanks for all the prayers and positive thoughts.

We're counting down to Disneyworld on the 12th!

Tuesday, February 1, 2011

Hoping for clear scans this morning..

I know it's been a while since I posted an update, thanks for everyones patience. Connor has been recovering nicely this round.
This week was a little bumpy. Poor kiddo rolled his ankle (we're waiting for X-ray results).

He has a regularly scheduled MRI this morning, please pray for a clean scan.

We have a busy few weeks coming up with Connor's Make-a-wish trip scheduled on 2/12. We will be flying to Florida to enjoy a fabulous time at Disney world. Connor is super excited!

Here are some recent pics:

Connor's cake to celebrate finishing Chemo!

Connor getting accessed for his last Chemotherapy.

Connor and his awesome Chemo Pal Nick playing cards.

Wednesday, January 5, 2011

That's all folks...

Connor's last chemotherapy drug was administered today at 4pm. What a long ride, and what a long journey. Thanks for being part of the journey with us.

We know that we will continue to have follow up appointments (In fact he needs to go in for a blood infusion tomorrow) every few months, but we also know his body will now be able to recover, and as the chemicals are finally able to leave his body we look forward to the changes.

As this day finally arrives we are reminded of how much we look forward to every day we have with our son, and how proud of him we are. We admire his strength, and we are eternally grateful for all the love, prayers and hope that you have sent him and us along the way.

Thursday, December 30, 2010

Last overnight stay-Complete

Last overnight stay .... check
Home by 10 pm ... check
looking forward to New Years Eve ..... check
looking forward to next Wednesday ... CHECK.

Thank you to everyone who has been sending their love and positive thoughts Connor's way. The last overnight stay went without a hitch, no nausea, no issues, in fact he woke up in a GREAT happy mood this morning.

He even made up his own joke (that he had to ask me at least 5 times today):
"Knock Knock"
"Who's there?"
"Reindeer who (which is supposed to sound like poo)"
"WHAT did you step in?"
(Followed by barrels of 7 year old boy laughter at the thought of someone stepping in poo!)

Lots of love, and warm thoughts, being sent your way from our family. Wishing everyone a wonderful 2011

Tuesday, December 28, 2010

Is this roller coaster ride starting to slow down?

We had a lovely Christmas (even though it was tough without our family here this year!). After being very patient, Connor finally made his counts today.
So tomorrow we will pack up our luggage and head out, and he will be admitted for his last overnight chemotherapy stay.

Next Wednesday we will celebrate again, when Connor receives his final dose of chemotherapy at the clinic.
We have so much to be thankful for this year, and so much to look forward to in 2011. We are looking forward to spending more time with friends and family, Connor getting stronger (as his body gets further away from the drugs), and Connor's make a wish vacation to Disneyworld in February (just to name a few).

I hope everyone had a magical Christmas, and has a spectacular New Year!

(Connor excited Santa Came)

(loving the Andes Mints)

"Mommmmm, Who does that? Who buys their kids socks and underwear for Christmas? It's not like you can play with them or anything......"

Wednesday, December 22, 2010

Hoping everyone is enjoying their Holiday Season

Unfortunately Connor didn't meet counts this week, so we are pushed out until next Wednesday (Our fingers are crossed we'll have our admit next Wednesday, thanks to everyone who has been sending their positive vibes our way).
On the positive note, that gives us 2 days of "free time" that we didn't plan on, to enjoy the holiday season.

We've been filling our days this week with wrapping, board games, and movies. Connor has been loyally opening his advent calendar. He has a lot of specific questions about Santa this year , "What happens if one of the reindeer are injured in flight?", "What happens if someone peeks and "sees" Santa?", "What if Santa's Helpers in the Mall "forget" to tell the "real" Santa what the kids want?"

Here's wishing everyone a very happy holiday season. Enjoy those you love, and live life to the fullest.

Wednesday, December 15, 2010

If at first you don't make counts .. try .. try .. again.. next week

Connor was so close.. but didn't have high enough counts to be admitted this week, so we'll try again next Wednesday!!

The hearing test is still showing some changes in his hearing in the upper ranges, no changes that would require hearing aids at this point. We are aware hearing loss was one of the side effects from some of his chemo meds, so it's something we are still keeping a close eye on.

Thanks for all of the positive thoughts and well wishes! Our fingers are crossed for next week.

Last cycle ...

Connor's last cycle is scheduled to start today.

Our first appointment this morning will be to check his hearing (One side has started to show some decline in high frequencies, we're hoping for minimal changes from his test today!)... please send your good thoughts his way.

After the hearing test we'll make our way to clinic, He'll get accessed, have labs drawn (to see if he "meets" his "magic" number of 750 or higher),and if so we will be admitted for his last overnight chemotherapy stay. Preliminary results from Monday showed him at 566 (So our fingers are crossed extra tight that those cells are working hard!!).

He's in great spirits this morning, he's really hoping he gets an overnight stay, .. but he's disappointed it may be his last.

Thursday, December 9, 2010

Counting down

We're literally counting down the last few weeks until Connor's last Chemotherapy treatment. He on the other hand is counting down the weeks before Christmas. "18 days", he told me the other day, "One week is 7 days, so that makes 2 weeks plus 4 days!! (I think that sounded like a "shorter wait" to him).
After waiting for so long to "finish" treatment I figured I would be hyper-focused on that final day, my bags packed ready to go.. but in reality I'm not quite there yet. I feel the excitement from other's around me, so many people are counting down Connor's last Chemo day with us (I appreciate their enthusiasm so much), and I had been questioning myself, why I'm not exuding the same sense of enthusiasm?
Of course I am so proud of my son, and what he has accomplished. How brave he has been, how patient, and trusting he is. I am ecstatic that he will be finished going through the physical process of receiving treatment, and all the effects that come with it. I'm excited we won't have to plan "life" around a few days a month that his counts are high. I'm looking forward to my husband not using all of his Vacation Days for appointments. I'm excited about all the things we've been holding back from during treatment to keep Connor healthy: seeing friends and family, and traveling (I even miss that dreaded Chuck-E-Cheese). The one thing, I've realized, I was hesitant about.. was the unknown. What WILL things be like after treatment? What WILL life look like for us?
Then I look at my son... and I realize it really doesn't matter. My best day is going to be today. My best times are still going to be happening right now, in these hours, these minutes, and these seconds of my life, regardless of what will happen tomorrow, or next week, or next month.
I can't be hesitant about the unknown, I need to continue moving forward, or I will miss out. So, we will be celebrating on the 22nd, in 8 days (Or 2 weeks if you would prefer!) and we will be celebrating the moments up until that day, and we will continue to celebrate well into the future.

I will be facing the unknown head on (just like everyone else), but instead of being hesitant about the unknown, I will be looking forward to the positive moments that will be awaiting me. The moments to celebrate, the moments to remember.
A little story worth telling:
We were doing our bi-weekly grocery shopping. It was pretty ordinary for us, I was manning the cart and the list and Greg was pushing Connor in his wheelchair. The boys run around the store "on quests" to find items on the list. On a trip down one of the isles there was a little girl (about 4, naturally inquisitive of course).
She came up to Connor "Hi", she said "What happened to you?".. "Oh nothing..... ", said Connor downplaying her question, "It's just Cancer".

Thursday, November 25, 2010

Thanks for giving ....

This year my "Things to be thankful for" List has grown tenfold.

I am Thankful for:

The thoughts and prayers you freely have given to my family.

The comments you have made on this blog, and the wonderful messages you leave on the message board.

The cards, and gifts you have sent Connor, and our family.. the little reminders you have sent him to keep moving forward.

The love, compassion, and care that Connor has received by numerous medical professionals.

The non-profit groups that have provided our family with so much.

Connor's Chemo Pal Nick, who volunteers his time to make Connor's trip's to clinic so enjoyable.

All of our wonderful Family and Friends.

The visitor's who have taken time out of their day to come here, and read this blog.

Connor's fans who have helped him give back to other Children with Cancer.

I'm thankful for our barking dog, Sparky who consistantly cuddles with Connor every night at bedtime.

I'm thankful for the time I have with my son everyday.

I'm thankful to have a husband who continues to make me laugh, stand strong by my side, and hold me at night.

Most of all I'm Thankful for Hope... Thankful that she has gotten us so far, and she continues to be with us everyday. I'm Thankful I can see her everyday.

Connor's quote of the week:
"Well you know mom, I am ALMOST half of a man now"
"When you are a grandma ........" (Yikes, nothing he says should start with that)

Saturday, November 6, 2010

2nd to last overnight stay.. finally complete.

Connor's 2nd to last overnight stay had been delayed for several weeks, but he was able to be admitted on Wednesday. Again, he was excited about being admitted.

Connor (and the rest of us) caught a cold on his original admittance day, which unfortunately suppressed his system. On the positive side, it's the first cold he's had since starting treatment over a year ago, and because of the delay we won't be spending Thanksgiving in the Hospital.

Our stay went smooth, no sickness. We were fortunate again that the Candlelighters were putting on another one of their wonderful family dinners. It's so nice that they do this (especially for families that are spending several nights in the Hospital).

This was by far the longest delay we've had between treatments (we were warned that the delays can get longer towards the end, and of course the cold didn't help). We were all getting a little bit anxious to be admitted (some more than others ... do you see me pointing to myself??)

So now, we have a few more day trips to receive Chemotherapy, some recovery time for counts to go up, probably some transfusions, and 1 more overnight stay. (DID YOU HEAR THAT??? ONLY 1 MORE OVERNIGHT STAY!!!! ), followed by a couple of day trips for Chemotherapy, and then he is DONE with treatment .

If Connor stays on schedule his last overnight stay will be the Wednesday before Christmas. (We will be ringing in the New Year SOOOOOOOO LOUDLY this year).

Our days have been filled with school, appointments and therapy. We're still enjoying the little things. Connor had a great Halloween, he was a Brave Knight (appropriate choice I thought).

Although he's still working on his strength and balance, we are mostly in the maintenance phase until treatment is finished. A big change we noticed this past week is that his hair is starting to come back a little (Connor said he wants to keep it short so he doesn't have to have haircuts).

(The following information is a shameless plug for Connor's DVD fundraiser... )
It's been a while since we've given an update on Connor's fundraising. Connor was able to donate 2 more personal DVD players to Children at Doernbecher. We've also moved to Zazzle to print his artwork. In addition to Cards, his artwork can now be printed on several other products as well, including: Shirts, Pet Clothes, Mugs and More.

To purchase items from his store you can click on this Store Link, or you can click on the link to the right of this blog.

We've also updated his site

In addition to the new variety of products that are available for purchase, the products have a lower purchase price, you can pay by credit, and they have a faster printing and shipping time. You can pick up a unique product, and feel good knowing that your purchase is making in difference in the lives of children with cancer. 100% of his profits will go towards purchasing additional DVD players for children in treatment.

Connor's Quote of the Month-A lesson in humility:

While out trick or treating, the bounty was plenty. Connor received HANDFULS of candy at each stop.
At the end of a long road, He rang the bell.
The Door Opened, "Trick-Or-Treat", he said
The man, placed a single tootsie roll in his bucket.
"Huh..", said Connor "That's a good way to save on candy!!!.. just give away one piece at a time"

Sunday, October 31, 2010

Happy Halloween!

I hope everyone had a Happy Halloween!

Wednesday, October 6, 2010

Only 2 more rounds to go.. Bring it on!!

Good-bye Summer, Hello Fall. What a busy season this is starting to be. Connor has started his school year at the South Columbia Family School. He is getting a hang of his new schedule. So much to learn this year! He is still a big fan of reading, but his favorite activities seem to be the Science Projects we do. This week he made a "Tornado" in a bottle, he just loves that thing.

This last round of Chemo was pretty hard on his system. He had 4 infusions in 2 weeks. Although we've had to spend a lot of time at the hospital this round, I can't say enough great things about the staff at Doernbecher. We are very pleased with our decision to change hospital's. All of the staff are so thorough, and they on top of EVERYTHING.

The doctor's have told us towards the end of treatment, It takes the body longer to recover. That's been evident this last round. Trying to keep his electrolytes balanced has been an interesting juggling act.

Connor's spirits are still good, but he is definitely counting down the last few rounds of Chemotherapy. A few things are starting to bother him, like the fact he doesn't has eyelashes and stuff get's in his eyes.
The last time we were in for an infusion there was a little girl celebrating her LAST treatment. What a party! .. and what a great sense of hope to behold. These kids are so strong and amazing, I am always inspired by them.

Connor's counts finally stabilized last weekend and we were able to get away for a couple of days. We took the trailer to Beverly Beach state park in Newport, for a couple of days. Connor rode his bike through the park, and he enjoyed the wildlife in the park (I could have gone without the raccoons, but I survived!). Connor's only request: SMORES.

We also enjoyed visiting the aquarium while we were in Newport. The Jellyfish are always amazing. We also enjoyed the Sea Otter's, and learning about the birds they have on exhibit.

Only two more hospital stays to go. One next Wednesday (10/13), and the last one in November (11/24). The last dose of Chemotherapy he receives should be on 12/1.
As you can imagine I'm counting down each day with great anticipation (I know many of you are too).

The last doctor we met with told us "He is doing REALLY REALLY well. For the stage that he is at in treatment he is doing GREAT!". Those words wrapped around me like a warm blanket, and although I was able to hold back the tears of Joy, I wanted to jump up and scream... THAT'S RIGHT HE'S DOING GREAT! HE'S AWESOME! HE'S STRONG, HE'S TOUGH, HE'S A FIGHTER....
The kindness that we've received from people STILL continues to amaze me, I wonder if I've been missing it for too long, or I took it for granted.

There was a young boy who spent the afternoon playing games with Connor (His sister was at the hospital being treated for a brain tumor). He treated Connor with such kindness, and respect. I just sat there watching them interact, because on that day .. there was nothing more important than Connor "just being a 7 year old".
Children always provide me with hope for the future. They can look beyond differences. They are naturally curious, and never ill intentioned.
Another little boy at the aquarium came up to Connor's wheel chair, and just stared at him (It actually happens a lot). I asked Connor if that bothered him, and he told me "No, they probably have never seen a kid without hair".
There are plenty of adults that inspire me everyday too, many of them are reading this post right now.
We were eating at a Restaurant in Newport, and Connor walked by a man who was eating lunch with his family. The Man said to Connor "Hey !! Can I give you a High-Five??", So Connor gave him a High-five, and the man said "Good Job, Keep up the great work!".
Now I will admit, Connor had no clue why this man wanted to give him a high-five! ..and since I didn't know this man I don't know "exactly" what possessed him to give my kid a high five that day , but what I DO know is that it made my SON feel GREAT!... and I know it probably made the man feel GREAT! ... and wherever that great big surge of kindness came from, deep inside his soul, .. I wish there was more to spread around. I wish we could just bottle it up and sprinkle it ALL around like fairy dust.....

Monday, September 20, 2010

We're still Rocking Out!

A year ago, I climbed the stairs to the stage. I was nervous, my palms were sweaty, and I had a lump in my throat.

The spotlight was bright, as I walked to the Microphone.

Tap. Tap. Tap “Is this thing on? Can you hear me?”

I could hear that guy in the back yell.. “Yeah it’s on!!”

I cleared my throat, and took a deep breath, “Thank you for joining us… I wanted to announce our Cancer Tour”.

Some of you had been to these shows before (although they are each unique), some of you were “first-timers”, but you decided to buy season tickets.

“I promise it will be a show you will never forget”

A lot of you waited patiently in your seats for the show to begin, some of you moved up close to get a better view. We were grateful that you even showed up.

In the next moment the spotlight dimmed, and in a sea of darkness, we could see a flickering flame. The next thing we knew this flame was joined by another and another. The room was suddenly glowing, and arms were raised high, rocking back and forth.

The show got off to a bumpy start, but you hung in there. We soon became more comfortable being on stage. We really started to jam. We memorized the lyrics, even did a few crazy dance moves.

At the end of each set we look out, and we still see arms raised high. I know if we jumped you would be there to catch us and pass us around.

Each day we are overwhelmed that you still are out there watching us rock on.

The show isn’t over yet, we still have a few more set’s to play, but we want you to know that we appreciate you being our supporter.

Even if you “think” you haven’t done “enough”, ... you have, just by being our fan.

Wednesday, September 1, 2010

MRI is Clear

Today was full of great news:

Connor had an MRI this afternoon, and the results are clean. No re-occurance in the brain or spine (Big Heavy Sigh!)Thanks again for the prayers and good thoughts that everyone has sent our way.

Connor did great with Anesthesia, even woke up happy (wow !!!)

His ANC was 1050 today, so he was also admitted for his next cycle of Chemotherapy today. What a champ! I'm so happy he's staying on schedule and doesn't need a dose reduction.

This is Connor's 7th round of Maintenance Chemo, only 2 more to go !!!!!!

The Candlelighters are putting on a family dinner at the hospital tonight, they always do such wonderful things for the Cancer patients and their families, we'll be enjoying that.

A little leftover good news from yesterday: Connor took his assesments for school and he's at 2nd grade level for math, and he's reading at 3rd grade 6 month level! (I'm so proud of him).

Enjoy today, Laugh Today and Squeeze those you love extra tight!

Monday, August 16, 2010

Where has the Summer gone ?

The Summer just flew by. Although we have a few weeks left before starting School, it feels like our Summer has dwindled to an end.

We finished up our 6th cycle of Chemotherapy at our new Hospital on August 2nd. The transition was pretty seamless. We are very happy with our decision to change facilities. It was a pretty intimidating decision to change in the middle of treatment but I feel very re-assured we made the right choice.

Connor did really well. He didn't have any nausea during his stay. He enjoyed watching the movie with all of the other kiddo's in the playroom (Cloudy with a chance of meatballs). He sampled their food service menu (leave it to Connor to select Salmon and Cheesecake).

Connor's magnesium was still off, and the doctors spent a lot of time with us this visit getting his dosing just right. They were very thorough.

This is a short Chemotherapy Cycle and Connor will be starting his next one on September 1st (Here's hoping he meets counts!!).

He's been presenting with symptoms of low Hemoglobin and platelets this weekend so we will be making a trip into the clinic today for a transfusion.

We have quite a few appointment coming up. This new hospital prefers blood counts twice a week (some of which we are able to obtain locally, which saves us a drive into Portland). Connor will be having a scheduled audiogram on the 18th, and a scheduled MRI the morning of his admittance for Chemo on 9/1 (Please pray and hope for no re-occurance, as that is always in the back of our minds).

It's been almost a year since Connor was diagnosed. There are days that it feels like yesterday, and there are days that it feels like so long ago. With only 3 more rounds of Chemotherapy to go I can see the end of this tunnel. I'm anxious to give up many aspects of this experience: Our life has become caught up in appointments, and scheduling around blood counts, Our cabinet has become a mini-pharmacy and my kid can name more cancer drugs than Vegetables. But through all of this we have been given many gifts that I know we would NEVER have experienced without Cancer entering our lives. These gifts are things you can't go out and purchase.

Connor's treatment (provided we don't have delays)is scheduled to end December 5th (which seems sooo far away to me), but I remind myself he only has 3 more treatments to go, and I remind myself how far he's come. My kid is so strong, and feisty. He doesn't waiver. Every week he's asked how's he's doing "Good as always he says!!".

7 is great, he's been pretty profound lately.

Connor on life: "Mom, do you know what's most important in life?" (Wow, that caught me off gaurd)"Family and Love are the most important things".

Connor on why we haven't won the lottery yet: "We will win just as soon as Dad picks the right numbers!"

Connor on saving electricity: "I wish there was a day that everyone would turn off their lights so I could see the stars better"

We did a little shopping the other day, and a nice woman approached Connor and said Hi. She told him she was a Cancer Survivor (Hodgkins Lymphoma), asked him his name, and what he was battling, "Not much!" he said, Greg explained that's a way of asking "What type of Cancer you have", "oh", he said (I know he only uses the word "Battling" in the context of Star Wars and video games)we told her he had Brain Cancer, and she told him she would keep him in her prayers. "That was nice of her", he told Greg, "But how did she know I had Cancer?"

I was thinking back the other day about the time Connor started to walk, and how that would change my life forever. Then I remember when he started talking and what a difference that made, and now I realize how life changes again once a child learns to read.

Connor completed his Library reading program (Grand prize, his own Library Bag, and a Free ticket to the Blazer's basketball game!! He's sooo excited!). More important than the prize, has been his own satisfaction in reading. He was sooo proud of himself when he completed his first chapter book on his own, even more excited when he completed his second. He reads everything... everywhere we go. Signs, and Menu's, advertisements, recipes, bumper stickers.. where there are words he will read. It's like a new world is in front of him. While I'm embracing his new found freedom of information overload, I do admit it makes me a tad nervous since he still "believes" everything he reads.

We had this great conversation about how people earn money the other day, which evolved into how people buy homes, then Connor asks "At what age can you start...." (and I thought Great!!! He's already thinking about what kind of job he wants to get so he can start saving) ......... and he says... "driving!"... (uggh that's a conversation for another day).

Thursday, July 29, 2010

Summer Fun

Photo's of our Summer fun. Connor had a great birthday weekend. Connor's next Chemo stay is Monday 8/2.

2 nights/3 days ! New accommodations at Doernbecher Children's Hospital.

Connor's Summer Fun on PhotoPeach

Friday, July 23, 2010

Happy Brithday Kiddo !!

Happy 7th Birthday Connor!

Friday, July 9, 2010

The long overdue post..

I've started and stopped this post several times, I know it's well overdue. I assure everyone we've just been enjoying our Summer to the fullest extent possible.

Connor is back to eating a little better, his foods of choice this round: Soft Serve Ice Cream, Pizza (only if he makes it himself), and chips and salsa. It's like international foods around here.

He's had a hard time keeping his electrolytes balanced this round. It's been a busy cycle for us.

Monday 6/21: Overnight Chemo Stay

Monday 6/28: Vincristine administered day trip. The doctor advised us his Sodium & Potassium levels were low , and advised us we would need to come in again on Friday to re-check labs.

Friday 7/2: Sodium & Potassium fine. Phospohorus low (added daily Phos med).

Monday 7/5: Vincristine administered day trip. Low Magnesium, and platelets. Connor admitted until 10:30 PM for Magnesium bolus and platelet transfusion.

Wednesday 7/7: Blood Draw : Magnesium Supplement doubled.

The Doctor's told us that these changes are common at this point in the treatment schedule. The chemo drug he takes this round (Cisplatain) starts to effect the kidneys (they have advised us this is temporary), however Greg and I are doing research and looking into meeting with another brain tumor research team to compare information. If there is anything we can do to limit these side effects, while still maintaining the integrity of the treatment outcome it's imperative we do that.

Connor is still doing really well. He just does his thing, takes his meds, and does what they ask him. We've been going to the movies a lot and he's really been enjoying that. His blood counts went up the first week post chemo, and were at the highest point since we've started (2,200). Even though his platelets were low, his ANC just started to dip below 600 this round.

We had a very casual 4th of July (sending up some money in smoke and flames in the back yard). Connor had to really push himself to stay awake until it got dark. But as soon as he was outside he was energized. This year he was so excited about fireworks. He's never been really fond of the noise and action, but this year he even had a rating system for each one 1 out of 5.

His favorites:
For fountains: The Unicorn (still the longest lasting show that we can find for the money), and a new favorite "Zombies".

For some crackling fun: Magic Whips (which of course my husband must string together so that they become the "Magic Jumprope").

In his down time Connor is a reading fool. He was super excited to get his first Library Prize (A "PICK YOUR OWN BRAND NEW BOOK" !!! WHAT AN AWESOME PRIZE !)... in the delay of my writing this post he also received his second prize (a library pencil and notepad!). The next prize is a pick from the "Mystery Chest".

Connor asked, "Hey mom what do you think is in that chest?", "Not sure". I said. "Well I guess it wouldn't be much of a "Mystery" if I knew huh?", he said. .. Me chuckling to myself "Wow it's amazing how much you sound like your father".

There was a last minute cancellation for a stay at the CCA caring cabin which we were able to secure (unfortunately we were worried we would miss out on our stay in August, because it coinsided with a hospital stay). We were very thankful for the time away. It was just what we needed to relax and re-energize.

More information about the CCA Alexandra Ellis caring cabin can be found here:

For photo's from our stay click here.

It's absolutey breath-taking. There is so much to do: a playroom, media room, private lake & beach with boats, and stunning views from the deck.

We were so very lucky to be able to take our dear friend Nikki with us. She helped make our time there extra special.

We spent the first 2 days enjoying the house, and on the third day we ventured out to tour the Tillamook cheese factory (such fun as always!).

The home is inspiring, as you feel surrounded in love by all the families who have visited before you, and you try and leave behind some hope for the ones that will follow.

We were finally able to get Connor's electrolytes back into the normal range (7/19/10), just in time for taking him to the waterpark for his birthday on Friday (7/23/10). Can't believe he's going to be 7. He told the doctor he's not ticklish under his chin anymore, "Because he's growing up and he's a man now" (scared of that).

After a consultation, We will be starting Connor's next chemotherapy round at Doernbecher Children's Hospital. It will be an exciting change for us. Some of the things they offer that we like: a Neuro-Oncologist assigned to all brain tumor patients, a separate in-patient hospital space just for Oncology patients, Connor's favorite: A prize for a poke program.

Connor has been into the planets lately. I know it's probably not surprising that, Greg (I mean Connor) being a Star Wars geek (I mean fan) would lead to such a fascination with the Solar System.
He made a cool school project of the planets which he embellished with glow in the dark stars and a glow in the dark asteroid belt.

We've also added glow in the dark planets and stars to his ceiling. I think he's finally checked out all of the Solar System books at the library, and we are moving onto NASA now.
The best part of being 6:
According to Connor: Learning new things
According to Mommy: The smiles, the jokes, seeing the enjoyment in my Son's face as he is learning through books. How he shows an interest in all things around him and wants to know more.
I hope everyone is enjoying their Summer. I hope to update after we return home from Washington this weekend.

Thursday, June 24, 2010

It finally feels like Summer

The Weather has been so beautiful the last couple of days, it finally feels like Summer.

Connor did really well with his Chemo Stay on Monday. We were able to prevent him from getting nauseous. He hasn't had much of an appetite, which has been pretty common for this point in his cycle.

Great news, we've completed 5 cycles of treatment, and only 4 more to go! We're over halfway there!

We have so many wonderful things to look forward to this year (Including Connor turning 7!!).

The fireworks stands are open and Connor is super excited to get some. Can you believe it's almost the 4th of July?

Tomorrow Connor is going to the library, He read enough to receive his first prize for their Summer reading program. He's been a reading fool ("Mom, I want to read 15 more minutes so I can color in another square").

Here is a photo of Connor's Sculpture from art therapy. It's his version of Rodin's "The Thinker"

Monday, June 21, 2010

Get this Chemo party started

Connor was soooo excited that he was admitted this morning. He barely made it, 970 and the doctor let him slide. We're still waiting to actually start the Chemotherapy (most likely around 2).

Hearing test results are PERFECT! no changes. (He can hear great! listening .. a different story)

He had art therapy with Dania (we love her!!!), he whipped up "The Thinker" in 3o minutes.

Last Tuesday was his last official day of school. Connor had a nice day at school with his friends, he had a blast with board game day. Connor took his dad to see "Prince of Persia" for father's day. It was action packed! (and only 2 kisses in the movie per Connor's count).

He's been reading feverishly to fill in the worksheet for the Library Summer Reading program. He can't wait to turn it in for some cool prizes.

Here's hoping for an un-eventful evening at the hospital!

..... and we're off

We start another round of Chemotherapy this morning. We'll be heading to Portland for a hearing test, and blood draw (to see if counts are high enough to begin Chemo). Our fingers are crossed.

I'll update some more after we find out if we are being admitted.

I hope everyone had a lovely Father's day ! We gave Greg the gift of "Rest and Relaxation"!

Monday, June 14, 2010

Hot Dogs for Breakfast, really?

Dear Connor's appetite,

We appreciate you being back in Connor's life. We know how important it is for his body to get the nutrition he needs. We know that since you've been back in his life this week he has been enjoying food all day long. We never know how long you are here to stay, so we will appreciate you while you are here.

P.S If you have a chance to speak with Connor's cravings, could you please ask him if he can mix up the "Hot Dogs" for breakfast craving ?


It was so nice to see some sun this weekend (now it is gone again). We enjoyed our first spring/almost Summer Barbecue over the weekend. Connor also enjoyed his class field trip to the zoo last week. It was so fun seeing the kids from class, and also seeing the animals at the zoo. We haven't been there since treatment started.

This is the last week of School for Connor's class. It was been such a busy year for them. They have learned so many things. I couldn't have asked for a better homeroom for Connor this year. Although he spent very little time at school, he always felt connected to his class. His teacher did an amazing job of keeping him connected. The kids were so thoughtful and were really kind.

They also did a fantastic job of taking care of "Monkey Connor". I've started a new page on this blog and there is link to the right, that will highlight some of Monkey Connor's adventures during the Summer.

We were given a reprieve from Clinic today. With Connor's counts going up it's safe to say we should have a relatively "normal" week around here. His next cycle of Chemotherapy is scheduled to start on the 21st (overnight stay and Audiogram). We're hoping for high counts (to avoid delays), and continued good audiogram results (thanks for the prayers and good thoughts).

Tomorrow is a big day for Connor, and one of mixed emotions. During the day we are going to visit his 1st grade class for the last time, and In the evening the "Make a wish foundation" will be sending a representative out to our home, so that Connor can make his wish.

As we started this "Quest to battle a Brain Tumor", we started out with A LOT of unknowns. We have become experts in some of the unknowns, mostly we are still fumbling around as novices. Unfortunately a lot of this process involves "flying" by the seat of your pants. You make a lot of decisions that you "think" are the best. There aren't too many comparables, since "everyone is different". So a lot of your decisions are based on "what will work out best for your child, and your family, right now".

We've had to make a lot of big, scary, hairy, tough decisions (and I'm sure there will be many more to make). Although I haven't posted many of those internal discussions on this blog, they have existed. There have been many sleepless nights, many tear filled moments of clinging onto to hope that you are making the "right" decision. We've come to grips that there are many "right" decisions out there, and although our decisions may not be "right" for someone else, they are "right" for us, "right" now.

Any regular reader here knows how fond we are of Connor's teacher. Her tutoring has been a blessing for Connor this school year. She is dynamic. I had complete trust in her, and never doubted that Connor's education would suffer in her hands. She pushed him, when she needed to push him, and most importantly she encouraged his love of learning even when he wasn't in a "Classroom".

The last thing a parent whose child is facing an illness like this wants, is more worry. Will my child lose his friends, will he forget his academics, will he fail to learn new skills, will he be depressed from all the changes, will he be forgotten while he's away? She walked with us for all these worries, and helped us battle them side by side.

Greg and I have had many discussions about Connor's education for this upcoming 2010-2011 School year. With treatment continuing until the end of year, Connor is faced with missing a large part of his second grade year. With heavy hearts we have decided to enroll him a local charter school this year. Although we are saddened he will be leaving his friends, school and staff at Grant Watts we are excited about the flexibility that this program will provide him and our family as we complete Connor's treatment. The charter provides a complete home bound curriculum, and access to a teacher for weekly tutoring. After Connor completes chemotherapy, we can focus on getting him strong and back to his regular school. It's a right decision, for our family, right now.

Well Someone is craving another Hot Dog! so I better wrap this up.

Thanks again for everyone's continued support. We'd love to hear about what "you" are doing this Summer. Please remember to stay in touch!

Saturday, June 5, 2010

Neglected far too long

Wow, I feel so guilty about not writing an entry in so long. The Chinese fortune I received last week told me that I needed to write a letter to someone important (There are too many important people in my life to choose from), so here you go!

Dear Friends of the Blog,
Thanks so much for checking up on Connor, I apologize for neglecting this Blog. Lately it feels that our events are un-blog worthy, but I know that the events are important to some.

Our spring weather has been full of rainy days. Everyone can blame Greg. The day after he installed our drip system it has been raining since (He must have connections).
On a positive note, I haven't had to water the yard, and this morning, the sky looks absolutely beautiful.
Connor's treatment in May was delayed. After a weeks delay he received his treatment with another dose reduction. The hope is that, the dose reduction will allow him to recover faster, to avoid future delays in treatment. We're beginning to see how his body trends during each cycle. We're learning which weeks we have the "best chance" of him feeling well, and where his blood counts will potentially be the highest (still not always high enough for many of the activities that he would like to participate in, can you say Chuck-E-Cheese germ factory??)
This cycle was unusual, his counts continued to go up while receiving his chemo medication, and didn't start to fall down until the end of week 3. He was able to go to school and visit with his friends (always a highlight in his book, and mine).
His Teacher also celebrated summer birthdays, so we were able to bring in some sugary sweet treats (sorry parents) to share with the class. As an extra bonus Connor's Chemo Pal Nick came to school to celebrate with him. I have to admit this was a little confusing for Connor. He wasn't quite sure why he was "Celebrating" his birthday, when it wasn't his birthday, but he certainly didn't display any confusion when it came to eating a cupcake.

Miss Horn's class was very successful in raising money for the Love Chloe foundation.

They had two successful Lemonade Stands, and raised enough money to purchase 7 kits. Thank you so much to all of our friends for coming out and supporting this venture. It was so nice to see familiar faces of those who mean so much to us.

The Monkey in my chair program has been so important for us. Not only does it serve as a way for Connor to feel connected to his class, it also provides a way for the class to stay involved and in touch with him while he's away.

The Big stuffed monkey sits in Connor's chair while he's away, and the class takes "Monkey Connor" to their activities. There is a "School to home" backpack that can be used for notes, drawings or cards. The package comes with a beautiful book that talks about "Why" there is a monkey in the chair, and a journal that records "Monkey Connor's" activities. Monkey Connor was VERY busy this year. He did lots of fun things as you can see:
As this school year dwindles to an end, I think it's appropriate that I say a few words about Connor's teacher this year. To put it bluntly, and in Connor's terms "Miss Horn Rocks!". There are so many unknowns in this process, but something that has been consistent has been Connor's teacher. She has been flexible, she has been compassionate, she makes him (and us) laugh, and she knows how he operates, she makes him feel successful. She has been a very important part of his (our) recovery. Not only has she been there for home tutoring, but she has also kept him connected to his class. She's gone above and beyond to incorporate health safety, acceptance for others, and compassion in her classroom. She's given these children lesson's that are not required on the state standardized tests, but life lessons that will continue to reward them forever.
Entering Connor's first grade classroom (even with some of it's craziness) provides me with a reality check in life. These children are good. They are driven, they are eager to learn. They exude life. They have the capacity to love unconditionally. There is so much opportunity there. Each one is like a little present waiting to be opened.

Memorial Day Weekend provided us with some time to get away from clinic. We were given a week off from blood checks (Greg was thrilled to be given a week off of clinic I was a little more apprehensive but I took pleasure in my husbands excitement).
Connor's choice for Memorial Day Weekend fun? Well let's see.. it couldn't be anything like lounge around and do yard work (so sorry neighbors,we'll get to it at some point), or have a BBQ in the backyard, NOPE.... He chose CAMPING! Anyone ever try to make reservations for camping the Friday of Memorial Day Weekend? Well we lucked out, found a place within a 1 1/2 hour drive to clinic (in the event we had an emergency) that had availability.

We were able to visit the Mt. St. Helens Visitor Museum, which we all thoroughly enjoyed (wasn't too crowded, and gave us an escape from the rain). I was so proud of my kid (and Greg), he sat through the whole educational video, about the history of Mt. St. Helens. He looked and read all of the exhibits, and on top of that wanted to stay to listen to the rangers presentation. He listened and even participated in the questions and answers portion. It was very informational, and quite interesting.

Unfortunately good things are sometimes cut short. Greg (I mean Connor) did not get his week off of clinic. Connor started presenting signs of anemia on Wednesday, so we headed down for a blood draw, and a blood transfusion. It took 6 hours, but on the positive side we didn't have to stay the night!
Connor has been working hard on on his Therapy. One of the best things we have done was change his Therapy to a private practice. We are SOOO PLEASED with Therapy Solutions for kids (I've added their link to this page as well). I really feel that they are the best of the best. Connor got fitted for leg braces to wear at night, to keep his Achilles tendon flexible. He thought this was pretty cool, to have something "Custom" made for him, He even got to select custom velcro straps (Flames and stars of course). It's nice to work with people who are familiar with the effects of these drugs, and who can offer proactive suggestions to limit some of the nasty side effects.
Everyone has been asking about our Summer plans. I hate to be pessimistic, but it is so difficult to plan anything during treatment. Some of the things we would LIKE to do are: Do some more camping (Connor loves it so much, even though it's wimpy camping in a tent trailer lol), spend some time at the park riding Connor's bike, and we have a weekend trip planned to the Seattle area. Other than that, we'll just be enjoying life, enjoying each other, soaking up some sun (with ample skin protection!!!!).
In the works: Connor's working on a Dinosaur movie (and I am working on finding a way to edit it, we will need to add sounds, and a voice over. If anyone has experience with this, or knows of a free online program please let me know! My High school T.V production days are a little rusty lol). We would love to have a private screening this summer (followed shortly by a down-loadable version).

Well that's about all folks. I think I've covered it all. I'll be better about future updates.

Thanks for stopping by.
P.S Extra big thanks for all the birthday wishes, cards and gifts!

Sunday, May 9, 2010

Happy Mother's Day

Here's wishing everyone a Happy Mother's Day. Even if you don't have any children of your "own", if you have ever nurtured, raised, protected, tended to, cared for, or cherished a young child, here is a big .. thank you.

Dear Son,

Since you have been born, my hair has turned grey,
I forget what I was about to do several times a day.

I've gained some knowledge, in all things "boy",
Star Wars, Transformers (Are you sure Bakugan is really a toy?)

Your daredevil ways make my heart skip a beat,
I know at some point you'll remember to put down that toilet seat.

I know it's hard to believe, and might sound really strange,
But there isn't one thing about you that I would change.

Your mumbling, your grumbling, the way you drag your feet,
These things make you what you are,
They make you complete.

I want you to know that on this special day,
I'll take whatever comes my way,

No matter what, I'll always be your Mother,
I'll take the whole package,
I don't want any other.

Written by Melissa Solomon, for Connor Solomon Mother's Day, 2010.

Tuesday, May 4, 2010

Put a monkey in someone's chair

For their Service Learning Project this year, Miss Horn's first grade class, will be having a Lemonade stand. The money they raise will go towards providing a "Monkey in my chair" kit to another student with cancer. Monkey Connor has been a big part of their class this year and they would like to provide the same experience for another child in need.
WHO: Miss Horn's 1st grade class
WHAT: Lemonade Stand Fundraiser (50 cents a glass)
WHERE: Scappoose Middle School Bus Lane
WHEN: May 15th, Starting at noon
We hope to see you there!

So close, but not quite

We started the weekend off right with good news about Connor's scans. We celebrated my birthday on Saturday (again, Connor's favorite part was the cake). Sunday we had a nice celebration with friends with fun games and snacks.

Unfortunately Connor didn't meet his counts on Monday, and was unable to start his chemotherapy on time this round. He was so close. We are taking a week to build up his counts and will try again this coming Monday. Good news: his counts are up enough that we aren't shunned from crowded public places, so he will get to visit his friends this week at school for a little bit, and maybe we can catch a movie this week.

Friday, April 30, 2010

Great News!

Scans look good no new tumor growth.
Thanks again for all your positive thoughts and prayers!

Tuesday, April 27, 2010

Don't malfunction

Connor had a Full Head and Spine MRI today. We left early in the morning (as we have done so many times now), it doesn't take us nearly as long to get out the door as it used to.Remember when you had a newborn and you packed a HUGE bag of stuff to bring with you? but eventually you realized you didn't need 85% of that extra stuff and you were able to downsize to a smaller bag? We've downsized.

Unfortunately even though we know the In's and Out's of the MRI process, it doesn't lesson the heavy burden on our hearts, and it doesn't erase the flash backs of the very first time Connor had one. We try and distract ourselves, while hoping for the very best results. Getting MRI's will be something Connor will continue to do until he's at least 18, we're learning that these feelings are just going to be par for the course.

I never thought things would start to get easier, but they truly have. We have started to settle into a routine, and there are many days we are almost able to "forget" that we are walking this path. We've been able to connect with support groups of other families that have children with similar brain tumor's. Some have completed treatment, some are just beginning, other's have lost their battle, but have so much information to offer, and are still fighting for others in the trenches.

A while back I wrote about what our "Normal" would look like, and although our "Normal" is unconventional, it's uncanny how similar it is to other's in the same situation. Other families of children with brain tumor's understand poor appetites, Anaesthesia induced "pirate" behavior, port access, ataxia, low ANC count and a multitude of other things associated with this illness. The road isn't as scary when you connect with other's who are walking the same path.

Our favorite anaesthesia nurse,returned from Maternity leave, and was there for Connor's MRI today. This Nurse was with us for SOOOO many of Connor's radiation treatments, and became very close to us. She supported us, and got us through many rough wake-up's. Seeing her today was very comforting. Connor was a trooper, requested bubble gum scent for his anaesthesia. We were able to get out of there in four hours.

Blood counts were still low this week ANC was 260 (he needs to get to 1,000 by Monday to avoid another delay & reduction), but on the positive side his hemoglobin counts are up so he didn't need a transfusion today.

Bad news, no flavored creamer in the MRI waiting room, in fact no Coffee in the waiting room. Too many people have spilled, so they have removed it. For those who don't know my husband: coffee flows through his veins, He does not operate without coffee. We were able to acquire some at the cafe to avoid him malfunctioning.

We are a little over 7 months into our journey, and half way though. We continue to be amazed by our dude. He really gives us strength.

What did you say? Today Connor asked our favorite nurse if she had a girl or a boy? (she had a girl), and what her name was??(Kate), and if she had cancer? (no she was happy and healthy) ... whoa back up, what an odd question. But favorite nurse didn't skip a beat (another reason we love her so) she gets it, she understands what these kids have gone through, and continue to go through.

So just some advice for other's starting out this path (in no particular order of importance):
1. Create a process that works for you and your family, and Keep it simple.
2. It does get easier, connect with people who have been there, it's ok to allow yourself to feel.
3. Don't worry about fitting your life into a mold, spend your time living a meaningful life.
4. Trust others who are sincere
5. Things won't always go the way you had hoped, but try to find the positive.
6. Don't forget to take care of yourself to avoid malfunction
7. Remember who you are doing this for, and how much they need you to be strong for them.

Tomorrow we have an audiogram, and we should find out the results from the MRI within a few days. We appreciate all the positive thoughts and prayers you are sending this way.

Wednesday, April 21, 2010

Connor Solomon on PhotoPeach

Sunday, April 18, 2010

The sky was so beautiful this weekend.

Last Sunday we were saddened to hear that Greg's grandma (Bubu) Lillyan Solomon passed away. She was always so kind to me, and funny, and so beautiful. We will miss her greatly.

Connor had Chemotherapy on Monday. Just a day trip. This is his second week since his over night stay, and he's starting to slow down. Not much energy and tiring very easily. His appetite hasn't been that great, and he's been a little nauseous but he's still happy.

We had our IEP meeting with the school this week (Individualized education plan), the team agreed that he can qualify for Special education services (Due to his traumatic brain injury), this will be helpful for him to receive services and accommodations in school.

Saturday my friend Nikki invited me to dinner, and to a live version of Dreamgirls in downtown portland. It's been a long time since I've gone to a "real" theater production. It was amazing. The cast was so talented. Something about a theater to me, the smell, the lights, the hustle and bustle of the crowd, it reminds me of the good old days.

The boys enjoyed dinner out (Chinese, Connor's choice lol). He asked the waitress for an extra fortune for his Mommy (aww) .. it said "Listen these next few days to your friends to get the answers you seek." anyone have any answers? I'm always up for advice!

Sunday I spent almost all day digging in the dirt. It's so nice to get back in my yard. It's so therapeutic to me, quiet (for the most part), gives me time to think and reflect. Connor went pretty crazy picking out seeds this year. You would think we were homesteading. Connor helped me plant some petunias, and paint some stepping stones for the front yard.

We ended our weekend with a game of Yahtzee.

Monday confirmed our suspicions that Connor's blood count was down again, 330.
He's scheduled for a Brain and Spine Scan on Tuesday, please send your positive thoughts and prayers we will need all the strength we can get that day. Sitting in the waiting room on scan day is always grueling (even with the good creamer).

Again we send our love your, way.. thanks for checking on us!

Saturday, April 10, 2010

Fun Family Activity

Connor had a blast dyeing Easter Eggs last Friday. He said "this is a fun family activity we should do it every Friday". On Saturday he was able to find all of his eggs (that bunny didn't make it challenging enough, but the Bunny probably felt rushed since the eggs were hid at 6:15 and Connor woke up at 6:45 phheww).

On Sunday we had a nice time with Friends, and enjoyed a fabulous Easter spread.

Monday we had our fingers crossed for high counts, however Connor was still low at 860. Connor went forward with treatment, but received a 50% reduced dose. This was our 1st 2 night stay at the hospital, and his 1st time receiving this chemotherapy drug. Most of the stay involved him receiving extra fluids and flushing his bladder and kidneys. He did really well, he was a real champ getting up throughout the night. We had some really great Nurses this stay, that always makes the stay better.

Connor participated in Arts & Craft night, had a movie night, played with his Chemo Pal, had some inpatient OT & PT, Played Hospital Bingo, Learned some new tricks from a visiting clown and went to Art Therapy. Pretty busy stay.

The hospital changed their meal service. You get to select your own foods from a menu. You call it in and it is delivered within 30-40 minutes. This was a huge improvement.

Thursday was Greg's birthday, so after a trip back into Portland for therapy, we took him out to dinner. Connor's favorite part: The cake of course!

Friday was Tutoring day with Miss Horn (Connor's loves his time with her), followed by family fun night. I made Greg his favorite meal (Chicken Parmesan), and Connor caught up on some Daddy video game time.

Other than a bit of a stiff neck from some of his new Therapy exercises, he's doing really well this round. He's been a little tired, but in great spirits.

Something funny he said to the nurse: During his stay he has to urinate every two hours. The nurse asked him if he went potty, and he said "Yes, I left you a treat in there!" .. nice.

Every time we go in, Connor gets questioned about his age, "Are you sure you are 6?, you are really tall for 6", it happens over and over again during his stay. I guess I'm failing at teaching him grace, because a new PT said "WOW, Are you sure you are 6?" and Connor said "I know.. I know.. everyone says that, I AM 6, but if you want to say I'm 8 that's fine."

The best part of the stay for me: Cuddling up with Connor in the sunny window seat reading Junie B. Jones..... and laughing, I love that boys laugh.

Thursday, April 1, 2010

It's just spilled Milk

Unfortunately Connor's counts were too low this week to start treatment. He was at 640, so the doctor is giving him another week to re-cover. In the event they are still too low on Monday, he will most likely receive a lower dose of Chemotherapy.

We enjoyed our "spring break" last weekend. We took a short trip to Long Beach, WA. We enjoyed the beach, and all the fun things Long Beach has to offer.
Unfortunately the Jeep was broken into, but luckily nothing was taken, or broken. I can't believe they didn't
jump at the opportunity to take of with that Weird Al CD, or the bag of beach towels. We did feel a little violated with the thought of some stranger crawling around our Jeep though ewww.

We met a little girl, while we were on Vacation, who has a Neuroblastoma, she is also a patient at Legacy Emanuel, but her 2 hr and 22 minute drive, makes our 45 minute drive to the hospital a piece of cake.
Connor has 2 new cravings this week: Fish and Tatar sauce, and Egg Sandwiches (I like the chocolate cake craving much better).

The most exciting part of our day so far: Working on our April fools day joke for dad, a "Cup of Spilled Strawberry Milk" Made from glue, and red liquid water coloring. Color glue, and set to dry on a wax paper covered cookie sheet. When dry peel off wax paper. You can make it resemble your beverage of choice. Since Strawberry milk has been Connor's beverage of choice lately we thought this would be most "believable".
We are having a hard time:
1. Waiting the next 10 minutes for Greg to come home.
2. Controlling our giggles
3. Keeping sparky from trying to lick it.

Sunday, March 21, 2010


Connor had his weekly trip to the Oncologist on Monday. His blood count is slowly creeping back up: This week it was 135, still well under the 500 range to go to school, but heading in the right direction. The ANC count will need to be at 1500 in order for him to start his next treatment on 3/29.

A lot of people have asked about what his Chemo schedule looks lik, so I've added his Chemo schedule to the right. It's only a tentative schedule of course, since his treatment is dependent on his ANC being at least 1500. In the event he doesn't meet the 1500 ANC mark, they will push back treatment, or lower the dose he receives.

This was an exciting week for Connor. He got a new bike. The trike was getting a little too small (or should I say his legs were getting a little too long).

Since Connor has trouble with mobility his new bike has given him such a sense of freedom. He asked to ride it almost everyday. We took him to the park and he had a blast. He was even able to tackle the uphill portions. Most importantly he's able to use the handbrake effectively. Connor's favorite parts: The cool blue flames, and the fact he can do tricks. He got so comfortable with it at the park, the next thing I know he said "Hey mom, look at this!" and there he was riding with no hands, his hands folded behind his head. Him: So confident, and proud, Me: Very nervous (but happy)!!!
This whole process has challenged us to be creative. We are constantly coming up with creative solutions so that instead of saying "no you can't do that" , we find alternatives so we can say "Here just use this", or "try it this way". His bike was a good example. We took away the need for Connor to need to balance, and best of all his bike expands to adult and will grow with him.
Another modification we made was for Connor's favorite sunny weather activity: Silly String fights. My son loves the silly string. He has been known to spend all of his allowance on the stuff. We picked up a few (about 7 ) cans, only to find out Connor didn't have the strength in his hands to push down the applicator. Daddy came to the rescue with his spray paint trigger handle. Connor was able to squeeze it with ease.
The weather was so lovely this week. We all got out in the yard and pulled some weeds. It feels so good to get out in the dirt.
Something we are looking forward to: Taking a trip to Long Beach, WA on Friday.
If a Leprachaun gave Connor 3 wishes what would he want:
1. A trip to Disneyworld
2. A trip to Legoland
3. A trip to Hawaii
(I think he likes trips!)

Monday, March 8, 2010

Casting and Reeling

After Connor's chemo stay on February 15th we enjoyed some nice sunshine on the weekend. Connor wanted to go fishing, so we took him to the Trojan Park lake. It was a little windy, unfortunately as fast as he could cast his line out, the wind was pushing it towards us. Needless to say, except for some of those infamous "weed" fish, we didn't catch anything.

Connor was thrilled with casting and reeling in, next time we will just go "Casting and reeling" instead of fishing. On the way home we stopped at our favorite fishing hole "Safeway" and picked up some fish for dinner.

The following weekend we were back to the lake, this time to feed the ducks. They are well fed ducks, and geese.

Unfortunately Connor's blood counts started dipping pretty low, pretty fast this round. On March 3rd I noticed he was developing a blood blister in his mouth, which is a symptom of low platelets that we needed to watch out for. The following day we spent in the hospital getting a platelet and blood transfusion. Connor rolled with it as always.

March 4th was our 10 year anniversary, and unlike 10 years ago (where it rained and rained) the sky was absolutely amazing on that day. The last 10 years have flown by. Although we spent our anniversary at the hospital, all that mattered was that we were together (that we were all together).
Today, Connor's platelet count was up a little bit, but his total ANC took another dive to 30 this week (his lowest count yet). Needless to say no trips to malls, or the Cheese Palace for us.
Connor is adamant that he doesn't get band aids. He can't stand taking them off. Today it took a little longer for him to clot, the nurse said "Are you sure you don't want a band-aid?" Connor's response, "Just let me bleed!"
Something that continues to amaze me:
Random acts of kindness by complete strangers
(a stranger gave Connor a free box to fill up at the Lego store).
What doesn't bother me as much anymore:
The stares from strangers. You can tell through their eyes that they are compassionate.
What I've learned to accept:
That my child has cancer, cancer doesn't have him.