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 BEST NEWS IS: NO MORE MYSTERY MEAT
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.
Saturday, April 10, 2010
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
Freedom
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.
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)!!!
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.
Friday, February 26, 2010
2nd round of maintenance Chemo
Connor was a pro for his second round of Chemo, this time he (and we) knew what to expect.
He was a real champ, and got up extra early, we left the house around 7 am.
Our first step was to check in for his Audiology appointment. Here he is in the waiting room. He was so excited because he saw an extra special person he knew there.
Here he is waiting some more, in-front the of the audiologist office. He'll have several hearing exam's due the fact Radiation and chemotherapy can cause hearing loss. There were no changes in his hearing so far (Yay great news!!). The audiologist advised us we still shouldn't talk about him down the hall.
At 9 am we arrived at the Oncology office (after a detour to pick up a donut at the hospital cafe). Here he had his port accessed, and had his blood tested prior to being admitted for his stay.
Around 10 am we were checked into the children's floor, while we waited for his chemotherapy drugs to be delivered. We waited.... and waited. Connor played some video games and watched T.V. He knows how to operate everything now. Around 12:30 we got some lunch... and waited some more.
We waited and waited some more....
Monday's are Craft Day, so Connor participated in making a Tie dyed shirt. (I love how they used the bed pads on the tables for absorbency, I thought that was pretty clever!) 
We arrived on February 15th. We decided to take some pictures of his stay.
He was a real champ, and got up extra early, we left the house around 7 am.
Our first step was to check in for his Audiology appointment. Here he is in the waiting room. He was so excited because he saw an extra special person he knew there.
Here he is waiting some more, in-front the of the audiologist office. He'll have several hearing exam's due the fact Radiation and chemotherapy can cause hearing loss. There were no changes in his hearing so far (Yay great news!!). The audiologist advised us we still shouldn't talk about him down the hall.
At 9 am we arrived at the Oncology office (after a detour to pick up a donut at the hospital cafe). Here he had his port accessed, and had his blood tested prior to being admitted for his stay.Around 10 am we were checked into the children's floor, while we waited for his chemotherapy drugs to be delivered. We waited.... and waited. Connor played some video games and watched T.V. He knows how to operate everything now. Around 12:30 we got some lunch... and waited some more.
We waited and waited some more....
Monday's are Craft Day, so Connor participated in making a Tie dyed shirt. (I love how they used the bed pads on the tables for absorbency, I thought that was pretty clever!)
We waited and waited some more, and then Mommy couldn't handle it anymore, I had to find out what our hold up was.
So finally at 2:30 PM, he got hooked up to his machine and started his Chemo, and then he went off to play some more.
We ate Dinner from the Cafe (unfortunately Monday night is Mystery Meat, can you believe the menu has been the same since September? ewww)
We said good bye to Daddy, and settled in. Connor did really well, no nausea over overnight. The next day Connor went to "Hospital School" which he really enjoyed.
Tips I've learned: Bring your own creamer, the powdered stuff doesn't do it and Bring your own pillow.
Saturday, February 13, 2010
See it all around you...
As Valentines day quickly approaches I wanted to send out my love to everyone, who visits here.
Our family has been overwhelmed by true kindness. Family, Friends, and Strangers have shared their love with our family in many ways. I've been privy to seeing the best of people in these last 6 months. It's like I've been given a special glasses that allow me to see kindness. I see raw emotions, I see caring, I see love.
The love that people have shared with us, has kept us moving forward, and has made us fight. When days are long, and tiring, we are able to stand tall and remember the crowd of people who stand behind us, the people that have our backs, who send their love, and prayers. Thanks for continuing to stand with us.
A man that is worth mentioning: Greg. He's a sentence of his own. He's my rock. There isn't a day that goes by that he doesn't make me laugh. He's one heck of a dad, and a husband, it doesn't get better than him.
Connor: He completes us. Greg and I chose the name Connor because it meant "much wanted". Connor also means "strong willed". Both of which are completely accurate.
Do you remember Valentines when you were in first grade?
Connor was able to participate in Valentines party on Friday. Do you remember painstakingly signing cards for everyone in the class, rushing around to put your cards in the the appropriate "Valentines Mailbox", dumping out your bounty of greatness, admiring each card, who it's from, whether or not there was a special heart, special sugary sweet, or message on your card that made it extra special ? Then, taking your loot home and re-admiring each one again... and again ? It's truly magical to experience Valentines through the eyes of a 6 year old.
Tomorrow: share your love, your hugs, your laughs, your kind words and share stories about those you love. See love all around you.
"You come to love not by finding the perfect person, but by seeing an imperfect person perfectly" -Sam Keen
Our family has been overwhelmed by true kindness. Family, Friends, and Strangers have shared their love with our family in many ways. I've been privy to seeing the best of people in these last 6 months. It's like I've been given a special glasses that allow me to see kindness. I see raw emotions, I see caring, I see love.
The love that people have shared with us, has kept us moving forward, and has made us fight. When days are long, and tiring, we are able to stand tall and remember the crowd of people who stand behind us, the people that have our backs, who send their love, and prayers. Thanks for continuing to stand with us.
A man that is worth mentioning: Greg. He's a sentence of his own. He's my rock. There isn't a day that goes by that he doesn't make me laugh. He's one heck of a dad, and a husband, it doesn't get better than him.
Connor: He completes us. Greg and I chose the name Connor because it meant "much wanted". Connor also means "strong willed". Both of which are completely accurate.
Do you remember Valentines when you were in first grade?
Connor was able to participate in Valentines party on Friday. Do you remember painstakingly signing cards for everyone in the class, rushing around to put your cards in the the appropriate "Valentines Mailbox", dumping out your bounty of greatness, admiring each card, who it's from, whether or not there was a special heart, special sugary sweet, or message on your card that made it extra special ? Then, taking your loot home and re-admiring each one again... and again ? It's truly magical to experience Valentines through the eyes of a 6 year old.
Tomorrow: share your love, your hugs, your laughs, your kind words and share stories about those you love. See love all around you.
"You come to love not by finding the perfect person, but by seeing an imperfect person perfectly" -Sam Keen
Wednesday, February 10, 2010
Connor had a Boys night out with Greg. Connor's choice? Chinese food for dinner. He came home with extra fortune cookies (SCORE!).
Connor was able to visit his class at the end of the day on Friday. Those 1st graders crack me up. One is funny, but a whole classroom of them can be hilarious. They were pumped up to make their Valentines "mailboxes", remember those days?
We were so fortunate to be able to spend the weekend with our friends in Seaside. It was so nice relaxing, and doing fun family activities. Sunday was beautiful and we were able to get out on the beach. Thanks to Nikki's Dad for letting us borrow his metal detector (that was awesome!!), we found a large booty of bottle caps!
We had a delicious meal at Norma's Ocean Diner in Seaside. This was the same Restaurant that we visited with our family in December. Connor fell "IN LOVE" with their chocolate cake dessert. We even picked up a slice the next day on our way out of town with my family. We had the biggest surprise at the end of our lunch: Our whole tab was covered. The waitress wouldn't provide any details, just that the bill had been "taken care of". The kindness of people truly continues to amaze me, and it reminds me to take the opportunity to pay the kindness forward.
Connor's blood counts went down again this week (It was a little unexpected since he is on his last week of his "Break", but the doctor assured us it wasn't uncommon). So here's to hoping his blood counts are back up for his overnight Chemo Stay on Monday.
Connor's working hard on his physical therapy exercises. Yesterday was gorgeous here, and he was able to get out and ride his trike.
How my son makes my heart melt: "Mom you are the prettiest girl I know"
Connor on dating: "Mom, I don't know why everyone is embarrassed to say they have "girlfriends", I have lots of friends that are girls.
Connor was able to visit his class at the end of the day on Friday. Those 1st graders crack me up. One is funny, but a whole classroom of them can be hilarious. They were pumped up to make their Valentines "mailboxes", remember those days?
We were so fortunate to be able to spend the weekend with our friends in Seaside. It was so nice relaxing, and doing fun family activities. Sunday was beautiful and we were able to get out on the beach. Thanks to Nikki's Dad for letting us borrow his metal detector (that was awesome!!), we found a large booty of bottle caps!
We had a delicious meal at Norma's Ocean Diner in Seaside. This was the same Restaurant that we visited with our family in December. Connor fell "IN LOVE" with their chocolate cake dessert. We even picked up a slice the next day on our way out of town with my family. We had the biggest surprise at the end of our lunch: Our whole tab was covered. The waitress wouldn't provide any details, just that the bill had been "taken care of". The kindness of people truly continues to amaze me, and it reminds me to take the opportunity to pay the kindness forward.
Connor's blood counts went down again this week (It was a little unexpected since he is on his last week of his "Break", but the doctor assured us it wasn't uncommon). So here's to hoping his blood counts are back up for his overnight Chemo Stay on Monday.
Connor's working hard on his physical therapy exercises. Yesterday was gorgeous here, and he was able to get out and ride his trike.
How my son makes my heart melt: "Mom you are the prettiest girl I know"
Connor on dating: "Mom, I don't know why everyone is embarrassed to say they have "girlfriends", I have lots of friends that are girls.
Wednesday, January 27, 2010
Well this hurts...
Connor had his blood drawn last Thursday at the local clinic. He was such a champ, he had to have a regular draw (instead of using his port). I offered him some numbing creme but he chose to go cold turkey. He held out his arm and did his thing. The only thing he requested was "NO BAND AID".
There was a little boy getting his blood drawn, and it was audibly apparent he was not having a pleasant experience. The lab technician apologized to Connor, and Connor told her "It's ok, this hurts you know, that's why kids cry". I'm glad Connor cleared that up for her.
Unfortunately his ANC went down from Monday, he was at 220. Unfortunately Connor needs to stay home from School for counts below 500. Our friends made us breakfast on Saturday which was really nice (and delicious). Connor was pretty tired and took a long nap.
On Monday his counts crept back up to 340, but he's still be pretty sluggish (this morning he didn't wake up until 11:30). He has a new found food fascination: Egg Flower Soup (I definitely liked the chocolate cake craving much better, but each their own).
Chemo Pal Nick was on Vacation this week (we missed him during our appointment).
We made our weekly trip to the library this week. This weeks fascination: Tigers
He read a book to me at the library. I love that he is AWARE that he can read. "Hey Mom I can read this book", "Hey mom did you read that sign you can save 50%!!", "Hey mom we need those they are buy 1 get 1 Free!!", "My personal favorite: Mom we need the perfect brownie pan, you can bake the perfect treats every time !!".
He's been working hard on his home exercises, even though he's been pretty tired. We hope he's on the upswing.
Connor's on a break from Chemo drugs for 4 weeks. His next Cycle will start on:
2/15/10 Starting with an Overnight Stay.
He will then have a Dose of Vincristine on 2/22 and another on 3/1.
The following 4 weeks will just be blood draws, no drugs.
Please pray for good counts so that he can stay on schedule.
For our local friends: It's still a while off but we are planning a garage sale in March. As you are spring cleaning please think of us, we'll be happy to accept your used items for our sale.
Something that surprises me: Sparky is sleeping in his castle bed (what kind of dog could turn that down?)
There was a little boy getting his blood drawn, and it was audibly apparent he was not having a pleasant experience. The lab technician apologized to Connor, and Connor told her "It's ok, this hurts you know, that's why kids cry". I'm glad Connor cleared that up for her.
Unfortunately his ANC went down from Monday, he was at 220. Unfortunately Connor needs to stay home from School for counts below 500. Our friends made us breakfast on Saturday which was really nice (and delicious). Connor was pretty tired and took a long nap.
On Monday his counts crept back up to 340, but he's still be pretty sluggish (this morning he didn't wake up until 11:30). He has a new found food fascination: Egg Flower Soup (I definitely liked the chocolate cake craving much better, but each their own).
Chemo Pal Nick was on Vacation this week (we missed him during our appointment).
We made our weekly trip to the library this week. This weeks fascination: Tigers
He read a book to me at the library. I love that he is AWARE that he can read. "Hey Mom I can read this book", "Hey mom did you read that sign you can save 50%!!", "Hey mom we need those they are buy 1 get 1 Free!!", "My personal favorite: Mom we need the perfect brownie pan, you can bake the perfect treats every time !!".
He's been working hard on his home exercises, even though he's been pretty tired. We hope he's on the upswing.
Connor's on a break from Chemo drugs for 4 weeks. His next Cycle will start on:
2/15/10 Starting with an Overnight Stay.
He will then have a Dose of Vincristine on 2/22 and another on 3/1.
The following 4 weeks will just be blood draws, no drugs.
Please pray for good counts so that he can stay on schedule.
For our local friends: It's still a while off but we are planning a garage sale in March. As you are spring cleaning please think of us, we'll be happy to accept your used items for our sale.
Something that surprises me: Sparky is sleeping in his castle bed (what kind of dog could turn that down?)
Wednesday, January 20, 2010
So Sleepy
As the doctor predicted, this week has been a little rough on Connor's body. This was the first week that his Hemoglobin counts were down, causing him to be sleepy and get tired very quickly. He's been extra unsteady and needs assistance getting around this house. His ANC (White blood cells) were fairly low in the 600 range, so we were advised to steer clear of crowded places (Malls, movies theaters, etc.) and places like Chuck E. Cheese (One of Connor's favorite germ laden places).
Connor's been conserving his energy, he really hasn't been in the mood to do much of anything. He's been having some general aches and pains: Tummy, back, and Cramps in his calves and thighs.
Even though he's been achy, he was anxious to start a project with his dad. 
Connor decided he wanted to build our dog "Sparky" a wooden dog bed. He was inspired by the book he received at his classroom book exchange. It's a story about a little boy who raises a puppy. Connor decided that he wanted Sparky to have a bed like the dog in the book (With a few modifications: A "White Castle Bed", with flaming dragons.).
Connor decided he wanted to build our dog "Sparky" a wooden dog bed. He was inspired by the book he received at his classroom book exchange. It's a story about a little boy who raises a puppy. Connor decided that he wanted Sparky to have a bed like the dog in the book (With a few modifications: A "White Castle Bed", with flaming dragons.). He helped Daddy assemble and paint it, and now it's just waiting for some finishing touches. He also wants sparky to have his own "Puppy" to take care of (I don't 
think anyone consulted Sparky about that).
think anyone consulted Sparky about that). We're having a consultation with a local physical therapy center today, I'm really hoping it works out. The less we have to travel to Portland the better (and easier on Connor).
Monday was the last dose of Vincristine for this cycle, now his body will have 4 weeks off from drugs until he starts the next cycle.
I'm going to do a second post today that explains what his "Maintenance" phase of chemo looks like, It's very confusing, but I know a lot of people have asked about it.
We're trying really hard to get into a routine but it's proving to be challenging. We're doing a lot of juggling: Hospital Visits, Physical Therapy, Speech, Ophthalmology, squeezing in some downtime, School and the everyday stuff (Is it really Tax time?). Trying to prioritize can get a bit tricky, and many things are dependent on blood counts, and how the little dude is feeling.
On the eye front: Connor's eye seems to be improving, he's able to keep it open more during the day (Yay!).
The Vincristine is definitely challenging. We start to notice side effects about week after it's administered (some of the most prevalent: Muscle weakness effecting fine motor, and gross motor skills). While Connor was on his break from Vincristine we did start to notice some improvement towards the end of the break, but since starting a new "Cycle" we see some of the effects again. It's such a roller coaster.
Good news it really doesn't seem to phase Connor. He just rolls with it.
And so we will we. We will have to be a little more patient, a little more flexible, roll with the punches, and just go with the flow (It's so worth it).
Something I've been taking for granted: The view out my window, when the sun rises over Mt. Adams, it's just amazing.
Thursday, January 14, 2010
The house is too quiet
Wow a lot has been happening around the Solomon household.
Connor only had one small bout of nausea after his overnight chemo stay last week. He's been a real champ. The Oncologist told us we can expect his blood counts to start going back down this week. The Maintenance Chemo Schedule is a bit confusing it will take some time for us to get used to it.
We've been enjoying our time with our family. We were real fortunate and they were able to spend several weeks with us. It's been nice to have other people around to keep our minds off "The Cancer" for a little bit.
Connor decided on Thursday that he wanted to have a "Boys night out", so he decided he wanted to take Daddy and Grandpa to the movies to see a "Boy Movie": Alvin and the Chipmunks (Grandpa was SOOO excited to see that!). The "Girls" went out to do water aerobics. Unfortunately the class times changed (My planning went awry again) so we came home and watched a movie.
On Sunday we went to Lincoln City with our family. Our plan was to go crabbing but unfortunately by the time we got there the tide was out (Missy's planning strikes again),It would have been great for clamming though!. Although he was sorely disappointed about not being able to go crabbing, Connor went searching for shells and rocks with Daddy and found a few rocks to try in his rock tumbler. It was nice that we were able to visit the Ocean so much during our families stay, the salty air always reminds me of my hometown, and special times growing up.
Our Friends were so kind to deliver VooDoo Donuts (thanks Nikki and Bryan) the family was so excited about that.
We finally dismantled Christmas. Connor was really upset, he wanted to keep the tree up "Forever" (me too!!). We played lots of card games and my family became a little addicted to "The Price is Right" on WII.
My family packed up today and flew back home. Connor helped with their luggage at the airport. Of course it's always bittersweet when my family comes to visit. It's so comforting when they are here, but so very sad when they need to leave.
Having my family here was like being wrapped inside a big warm blanket, I felt safer, and stronger. My family grounds me. My sister with her great laugh, and smile. My mom with her big strong hugs that hold me together when I feel like I could just fall apart in her arms, and my dad who makes me laugh down to my soul (and always keeps us well fed). When they are gone I miss their quirks, our little inside jokes, and the extra noise in the house, it's all too quiet.
Although Connor would never verbally admit he was feeling sad, he is. We talked about how quiet the house was, and he gave me an extra long goodnight hug.
The best part of today: Having people in your life that you love so much.
Connor only had one small bout of nausea after his overnight chemo stay last week. He's been a real champ. The Oncologist told us we can expect his blood counts to start going back down this week. The Maintenance Chemo Schedule is a bit confusing it will take some time for us to get used to it.
We've been enjoying our time with our family. We were real fortunate and they were able to spend several weeks with us. It's been nice to have other people around to keep our minds off "The Cancer" for a little bit.
Connor decided on Thursday that he wanted to have a "Boys night out", so he decided he wanted to take Daddy and Grandpa to the movies to see a "Boy Movie": Alvin and the Chipmunks (Grandpa was SOOO excited to see that!). The "Girls" went out to do water aerobics. Unfortunately the class times changed (My planning went awry again) so we came home and watched a movie.
On Sunday we went to Lincoln City with our family. Our plan was to go crabbing but unfortunately by the time we got there the tide was out (Missy's planning strikes again),It would have been great for clamming though!. Although he was sorely disappointed about not being able to go crabbing, Connor went searching for shells and rocks with Daddy and found a few rocks to try in his rock tumbler. It was nice that we were able to visit the Ocean so much during our families stay, the salty air always reminds me of my hometown, and special times growing up.
Our Friends were so kind to deliver VooDoo Donuts (thanks Nikki and Bryan) the family was so excited about that.
We finally dismantled Christmas. Connor was really upset, he wanted to keep the tree up "Forever" (me too!!). We played lots of card games and my family became a little addicted to "The Price is Right" on WII.
My family packed up today and flew back home. Connor helped with their luggage at the airport. Of course it's always bittersweet when my family comes to visit. It's so comforting when they are here, but so very sad when they need to leave.
Having my family here was like being wrapped inside a big warm blanket, I felt safer, and stronger. My family grounds me. My sister with her great laugh, and smile. My mom with her big strong hugs that hold me together when I feel like I could just fall apart in her arms, and my dad who makes me laugh down to my soul (and always keeps us well fed). When they are gone I miss their quirks, our little inside jokes, and the extra noise in the house, it's all too quiet.
Although Connor would never verbally admit he was feeling sad, he is. We talked about how quiet the house was, and he gave me an extra long goodnight hug.
The best part of today: Having people in your life that you love so much.
Tuesday, January 5, 2010
Chemo Maintenance-1st day
Connor actually woke up excited to go to the Hospital yesterday. We knew it was going to be a busy day but didn't know exactly what to expect for our first overnight Chemo stay. Here is the run down:
9:oo am Connor had a bowl of cereal.
9:30am We left the house (it was pouring rain) Connor was still hungry for more breakfast (steroid frenzy) so we picked him up some breakfast to go.
10:15 We arrived at the clinic for our 10:30 apt. It was packed. Connor's weight went up about 3 lbs. since our last visit. We read magazines, played Rock-paper-scissors, and crazy Eights.
10:45 Connor got his port accessed, and his blood drawn.
11:45 We met one of the Oncologists, He went over Connor's blood results (ANC was over 6,000, Excellent!). The Doctor talked to us about Connor's MRI results. Although there is no evidence of recurrence (Excellent News), the damage to his Cerebellum from the radiation can be observed (this was to be expected), his Cerebellum is smaller. The damage that has been done to his brain (from the treatments) has also caused Ataxia. He has been experiencing increased: Unsteadiness, unsteady gait, uncoordinated eye movements, and some clumsy speech. We're hoping to see some improvement from strengthening his core muscles, and enrolling him in weekly Physical, Occupational, Speech and Swim Therapy.
12:45 After a thorough exam we headed over to the Children's Floor to check in for our overnight stay. Connor ate some lunch (Steroid frenzy again).
1:00 We played some games, went to the "Starlight Lounge" playroom
2:30 Connor started his Chemo Therapy. A Dose of Vincristine, Hydration, and Zophran (Anti Nausea Medicine).
4:00 Chemo Pal Nick came to play. He went with Connor to the Starlight Lounge to paint a piggy bank. We all played UNO attack.
5:00 Dinner. These steroids will make a little man do crazy things. He ate the "Mystery Meat" and Mashed potatoes. Amazing.
6:00pm More Chemo- 6 hours of Cisplatin. A bedtime Movie. lots of peeing.
9:45pm: Connor finally fell asleep. lots of peeing.
12 am -5am Hydration- waking up to Pee every 2 hours.
5 am 1 Dose of Nausea. Benadryl made him feel better.
5 am- Current: Hydration/Peeing every 2 hours/Breakfast/and now he's off to the Starlight lounge to play video games with Daddy.
We'll be here until 6 pm tonight, just receiving fluids. We have a follow up with his Radiologist at 1pm while we are here, and hopefully some Therapy squeezed in somewhere.
Being here definitely brings back memories of our very first stay (especially when I can see the PICU from our Window) but it also is a reminder of how far Connor has come. Even Connor acknowledged his progress when breakfast was delivered (The meals don't change around here either lol). "Mom, do you remember when we were here before and I couldn't feed myself the cereal?", Yes I do. I remember not knowing if he would be able to walk, dress himself and do a number of other things that I may have taken for granted prior to this. But he can.
Something special about yesterday: The strength my son gives me. How he continually amazes me. How brave he is.
Something funny Connor said yesterday: The nurse asked Connor if his bandages make him break out. "No", he said "I won't break out, I have to stay overnight".
9:oo am Connor had a bowl of cereal.
9:30am We left the house (it was pouring rain) Connor was still hungry for more breakfast (steroid frenzy) so we picked him up some breakfast to go.
10:15 We arrived at the clinic for our 10:30 apt. It was packed. Connor's weight went up about 3 lbs. since our last visit. We read magazines, played Rock-paper-scissors, and crazy Eights.
10:45 Connor got his port accessed, and his blood drawn.
11:45 We met one of the Oncologists, He went over Connor's blood results (ANC was over 6,000, Excellent!). The Doctor talked to us about Connor's MRI results. Although there is no evidence of recurrence (Excellent News), the damage to his Cerebellum from the radiation can be observed (this was to be expected), his Cerebellum is smaller. The damage that has been done to his brain (from the treatments) has also caused Ataxia. He has been experiencing increased: Unsteadiness, unsteady gait, uncoordinated eye movements, and some clumsy speech. We're hoping to see some improvement from strengthening his core muscles, and enrolling him in weekly Physical, Occupational, Speech and Swim Therapy.
12:45 After a thorough exam we headed over to the Children's Floor to check in for our overnight stay. Connor ate some lunch (Steroid frenzy again).
1:00 We played some games, went to the "Starlight Lounge" playroom
2:30 Connor started his Chemo Therapy. A Dose of Vincristine, Hydration, and Zophran (Anti Nausea Medicine).
4:00 Chemo Pal Nick came to play. He went with Connor to the Starlight Lounge to paint a piggy bank. We all played UNO attack.
5:00 Dinner. These steroids will make a little man do crazy things. He ate the "Mystery Meat" and Mashed potatoes. Amazing.
6:00pm More Chemo- 6 hours of Cisplatin. A bedtime Movie. lots of peeing.
9:45pm: Connor finally fell asleep. lots of peeing.
12 am -5am Hydration- waking up to Pee every 2 hours.
5 am 1 Dose of Nausea. Benadryl made him feel better.
5 am- Current: Hydration/Peeing every 2 hours/Breakfast/and now he's off to the Starlight lounge to play video games with Daddy.
We'll be here until 6 pm tonight, just receiving fluids. We have a follow up with his Radiologist at 1pm while we are here, and hopefully some Therapy squeezed in somewhere.
Being here definitely brings back memories of our very first stay (especially when I can see the PICU from our Window) but it also is a reminder of how far Connor has come. Even Connor acknowledged his progress when breakfast was delivered (The meals don't change around here either lol). "Mom, do you remember when we were here before and I couldn't feed myself the cereal?", Yes I do. I remember not knowing if he would be able to walk, dress himself and do a number of other things that I may have taken for granted prior to this. But he can.
Something special about yesterday: The strength my son gives me. How he continually amazes me. How brave he is.
Something funny Connor said yesterday: The nurse asked Connor if his bandages make him break out. "No", he said "I won't break out, I have to stay overnight".
Sunday, January 3, 2010
We took the family to OMSI on Saturday. Connor had a blast. He enjoyed all of the exhibits including the new T-Rex exhibit. He told grandpa, "I'm an explorer, I'm going to find dinosaur bones one day". After OMSI we took the family to Voodoo donuts but the line was a little too long (and slow moving) so w
e will try again another time.
e will try again another time. 
Connor is an eating machine since he started his steroid. He has a new found fascination with Crab and asks every morning if we can go crabbing. Here is a photo from the Chocolate cake fascination. We are happy he's starting to put on a little more weight before starting Chemo.
The snowman that Grandpa made finally melted on Saturday, he hung on for a long time. Last night we had a nice evening with friends and family, Cioppino, and a fun game of apples to apples.
We will be checking in for Connor's Chemo this morning. He will have 6 hours of Chemo followed by 24 hours of hydration. These rounds of chemo can make him nauseous so we will need to keep him on his anti-nausea medicine.
Thursday, December 31, 2009
Happy New Year
Happy New Year! We're definitely ready for it!
We enjoyed a nice evening of appetizers, and a cracked crab dinner. I think Connor ate a whole crab all by himself.
Connor almost made it, he fell asleep at 9:30.
Wishing you the best of health, much happiness, lots of laughs and much kindness in 2010.
We enjoyed a nice evening of appetizers, and a cracked crab dinner. I think Connor ate a whole crab all by himself.
Connor almost made it, he fell asleep at 9:30.
Wishing you the best of health, much happiness, lots of laughs and much kindness in 2010.
Wednesday, December 30, 2009
A quick update
Connor's MRI scans showed NO tumor recurrence (Yay!!). His blood counts were fabulous (Over 4,000, the best yet!). His hearing test showed no hearing loss.
He had some swelling (most likely a side effect from the radiation), and he has been taking steroids to help with the edema. They are definitely helping and have also increased his appetite. Connor has gained 2 pounds since last week (mostly from Chocolate cake I'm sure lol).
He's all set to start his maintenance phase of Chemo on the 4th. He will have Chemo for 6 hours followed by 24 hours of hydration.
He's a tough guy for sure. We send our love to everyone and hope you have a fabulous New Years celebration.
He had some swelling (most likely a side effect from the radiation), and he has been taking steroids to help with the edema. They are definitely helping and have also increased his appetite. Connor has gained 2 pounds since last week (mostly from Chocolate cake I'm sure lol).
He's all set to start his maintenance phase of Chemo on the 4th. He will have Chemo for 6 hours followed by 24 hours of hydration.
He's a tough guy for sure. We send our love to everyone and hope you have a fabulous New Years celebration.
Tuesday, December 29, 2009
Cotton Candy for me please
Connor had his MRI this morning at 6:15. He was a real trooper. He was able to choose a special "Smell" for his anaesthesia gas. He chose cotton candy (too bad they didn't offer chocolate cake).
He woke up happy, and was extra hungry for: Chocolate Cake of course.
We will be getting the MRI results after Connor's hearing test, tomorrow afternoon.
We had a big surprise this afternoon.... snow. Connor enjoyed it so much, he has been waiting for snow all month.
Thanks for all the prayers and well wishes for a clean scan.
A nice thing: Some of the nurses that helped Connor when he was in Radiation Treatment, were there for his MRI. It was like seeing old friends.
The best part of my day: Connor enjoying the snow.
The best part of Connor's day: Chocolate Cake
He woke up happy, and was extra hungry for: Chocolate Cake of course.
We will be getting the MRI results after Connor's hearing test, tomorrow afternoon.
We had a big surprise this afternoon.... snow. Connor enjoyed it so much, he has been waiting for snow all month.
Thanks for all the prayers and well wishes for a clean scan.
A nice thing: Some of the nurses that helped Connor when he was in Radiation Treatment, were there for his MRI. It was like seeing old friends.
The best part of my day: Connor enjoying the snow.
The best part of Connor's day: Chocolate Cake
Monday, December 28, 2009
I hope everyone had a lovely Christmas. Connor decided to leave Santa Chocolate Milk this year because he thought "Santa might be tired of regular white milk". He was so excited to see that Santa ate his cookies and drank his chocolate milk.
We hope we didn't disturb the neighbors too much while we blasted guitar hero all day.
On Saturday we took the family for an overnight stay in Seaside. Connor loved walking on the beach, playing arcade games, eating clam chowder, feeding the seals, swimming in the pool, and eating chocolate cake. Lots of fun was had by all.
Tomorrow is a big day for us. Connor is getting a full head and spine MRI tomorrow morning at 6:15. Please pray for clean results.
Best part of the day: My son's new found love for Chocolate cake. How does he manage to get it on his forehead?
We hope we didn't disturb the neighbors too much while we blasted guitar hero all day.
On Saturday we took the family for an overnight stay in Seaside. Connor loved walking on the beach, playing arcade games, eating clam chowder, feeding the seals, swimming in the pool, and eating chocolate cake. Lots of fun was had by all.
Tomorrow is a big day for us. Connor is getting a full head and spine MRI tomorrow morning at 6:15. Please pray for clean results.
Best part of the day: My son's new found love for Chocolate cake. How does he manage to get it on his forehead?
Thursday, December 24, 2009
What do you see through your glasses?
Our week has been so full. We have been enjoying having our family close with us during this time of year. Connor's counts have been up and are the highest yet, his total blood count was over 2,000 on his blood draw this week.
Connor has been enjoying (and probably wearing out) his family. He went bowling, to the movies and has been eating lots of yummy baked goodies. I wanted to send a heartfelt thanks to all the people that have thought of our family during the holidays. The kindness of all of the anonymous gifts has been so overwhelming. The cards, the gift baskets, and the homemade gifts were all so lovely.
I hope you find your heart full on this Christmas eve. I've been given a new pair of glasses this year that allows me to see the things that matter most. I see things that I have never seen before and I see things clearly that before were blurry. I can actually see the love that family, friends, and strangers share with my son. I see small things that don't matter so much, and small things that mean so very much. I hug a little more, I watch a little more, I experience life a little more. I cry a lot more, but I also love a lot more. Although I am more scared than I have ever been in my life, my heart is filled to the brim with love.
Thank you to everyone who has sent Connor a gift, a card, a thought or a prayer. Your well wishes, love and prayers keep our hope strong.
I wish you and all of yours a very Merry Christmas.
The best part of today: Loving life, Living life, hearing Connor laugh, seeing him smile and feeling his hugs.
Something funny he said today: My mom bought a cake from the bakery and it got a little smashed up in the box, she was trying to smooth out the frosting and Connor said, "Grandma you don't need to do that, just take it back and have them re-frost it."
Connor has been enjoying (and probably wearing out) his family. He went bowling, to the movies and has been eating lots of yummy baked goodies. I wanted to send a heartfelt thanks to all the people that have thought of our family during the holidays. The kindness of all of the anonymous gifts has been so overwhelming. The cards, the gift baskets, and the homemade gifts were all so lovely.
I hope you find your heart full on this Christmas eve. I've been given a new pair of glasses this year that allows me to see the things that matter most. I see things that I have never seen before and I see things clearly that before were blurry. I can actually see the love that family, friends, and strangers share with my son. I see small things that don't matter so much, and small things that mean so very much. I hug a little more, I watch a little more, I experience life a little more. I cry a lot more, but I also love a lot more. Although I am more scared than I have ever been in my life, my heart is filled to the brim with love.
Thank you to everyone who has sent Connor a gift, a card, a thought or a prayer. Your well wishes, love and prayers keep our hope strong.
I wish you and all of yours a very Merry Christmas.
The best part of today: Loving life, Living life, hearing Connor laugh, seeing him smile and feeling his hugs.
Something funny he said today: My mom bought a cake from the bakery and it got a little smashed up in the box, she was trying to smooth out the frosting and Connor said, "Grandma you don't need to do that, just take it back and have them re-frost it."
Sunday, December 20, 2009
Time flies when you are having fun
It has been a fun and exciting week for Connor. Friday was very busy.
Grandma Debbie, Grandpa Roger and Auntie Mallory arrived early Friday morning, Connor has been counting down the days for them to visit.
Connor's class had a lovely Christmas celebration Friday morning. There was a relay race, book exchange and some fun Christmas dancing and singing. It was so great seeing the Holiday joy on those kids faces.
great, and his vision was great. She confirmed our suspicions that the ptosis he's experiencing is a side effect of his Chemo drug Vincristine. She also told us she has seen quite a few kids with the same side effect from Chemo, and the condition is generally temporary and improves after they stop taking the drug. We are going to work at getting Connor a pair of glasses with a ptosis crutch (This is a photo of what a ptosis crutch looks like). He will wear the glasses a couple times a day to lift his eye lid. This will keep the eye active and prevent it from getting weak. He was a champ at getting his eyes dilated.
Connor has been having a blast playing with grandma, grandpa and auntie. It definitely feels a lot more like Christmas when you are surrounded by family.
Saturday he was pretty exhausted and went to bed pretty early, it was such a busy and fun week for him.
Our mystery gifts continue. Each one is unique, and so very thoughtful. One of the packages this weekend included a harmonica. Connor must have played that for about an hour straight. It's nice when
We also have been receiving a different piece of a nativity set every night. It gets dropped off on the front porch every night. Whoever is leaving the stealth presents has been pretty elusive. Our dog Sparky (or barky and he's warmly regarded), doesn't even bark or notice. The set is beautiful and it's a nice reminder of the real reason for Christmas.
Please rest assured if I don't write as much for the next few days, everything is well. I'm just soaking in all the love from the family.
One of Connor's favorite activities to play with Grandpa: Paper Airplanes
Grandma Debbie, Grandpa Roger and Auntie Mallory arrived early Friday morning, Connor has been counting down the days for them to visit.
Connor's class had a lovely Christmas celebration Friday morning. There was a relay race, book exchange and some fun Christmas dancing and singing. It was so great seeing the Holiday joy on those kids faces.
After Connor's Christmas party we took him to see the Neurological Opthamologist. She was very pleased that his optic nerves looked
great, and his vision was great. She confirmed our suspicions that the ptosis he's experiencing is a side effect of his Chemo drug Vincristine. She also told us she has seen quite a few kids with the same side effect from Chemo, and the condition is generally temporary and improves after they stop taking the drug. We are going to work at getting Connor a pair of glasses with a ptosis crutch (This is a photo of what a ptosis crutch looks like). He will wear the glasses a couple times a day to lift his eye lid. This will keep the eye active and prevent it from getting weak. He was a champ at getting his eyes dilated.Connor has been having a blast playing with grandma, grandpa and auntie. It definitely feels a lot more like Christmas when you are surrounded by family.
Saturday he was pretty exhausted and went to bed pretty early, it was such a busy and fun week for him.
Our mystery gifts continue. Each one is unique, and so very thoughtful. One of the packages this weekend included a harmonica. Connor must have played that for about an hour straight. It's nice when
We also have been receiving a different piece of a nativity set every night. It gets dropped off on the front porch every night. Whoever is leaving the stealth presents has been pretty elusive. Our dog Sparky (or barky and he's warmly regarded), doesn't even bark or notice. The set is beautiful and it's a nice reminder of the real reason for Christmas.
Please rest assured if I don't write as much for the next few days, everything is well. I'm just soaking in all the love from the family.
One of Connor's favorite activities to play with Grandpa: Paper Airplanes
Wednesday, December 16, 2009
It's all pretty amazing.
We continue to receive mystery gifts. I know I have said it before, but it truly amazes me. I don't really have the right words to describe how overwhelming the generosity has been.
Connor was able to enjoy a nice afternoon at School on Tuesday and Wednesday.
On Tuesday Connor was excited about participating in P.E, although he was concerned about not being able to run. I re-assured him that he just needed to do his best, even if he wasn't able to run.
The last time he went to P.E he was still in his wheelchair, yesterday he participated in a relay race. It's truly amazing to me. Although some folks may just see a kid who has challenges, I see a little boy who has accomplished so much, and continues to accomplish so much everyday.
Post surgery I had no idea if my little boy would ever walk again. On Tuesday he did a super fast walk (in place of jogging), Galloped (by holding onto my hands), Skated on Paper Plates, and used a scooter board (with some support). I was prepared for him to be upset, or frustrated, or angry because he "couldn't do the same stuff" as before; instead I had a little boy who was excited about his accomplishments. "Wasn't that great?" he asked me, "Did you see all that stuff I did?", "Yes I did" I told him, "I loved how you did your best."
I was also impressed by the teamwork of Connor's class. There were no long faces because they "lost" the relay, instead I heard lots of "Good Job Connor!" and "You did it!". Again, Amazing.
Well needless to say after a long Tuesday, Connor woke up sore this morning. His little legs had a big work out.
Today Connor went to library, did math, and films. The class was so energized by their teacher. Their personal favorite had to be "Build a Man" (Hangman). What a super creative way for kids to learn about letters and spelling.
Miss Horn is like a Rock Star to those kids. They have such admiration for her. She's like a perfect sweet and sour sauce, Just enough sweet to balance the sour.
I am continually impressed by the Teacher's and staff at Connor's school. They continue to do more with less, they are creative, and fun. Yet firm and have high expectations.
Visiting that classroom always renews my hope for the future. Not just my son's future but our future as a country. There is so much good to still be found in young children. So many great qualities to encourage and celebrate.
If these kids were in a dark room they would truly shine.
Connor was able to enjoy a nice afternoon at School on Tuesday and Wednesday.
On Tuesday Connor was excited about participating in P.E, although he was concerned about not being able to run. I re-assured him that he just needed to do his best, even if he wasn't able to run.
The last time he went to P.E he was still in his wheelchair, yesterday he participated in a relay race. It's truly amazing to me. Although some folks may just see a kid who has challenges, I see a little boy who has accomplished so much, and continues to accomplish so much everyday.
Post surgery I had no idea if my little boy would ever walk again. On Tuesday he did a super fast walk (in place of jogging), Galloped (by holding onto my hands), Skated on Paper Plates, and used a scooter board (with some support). I was prepared for him to be upset, or frustrated, or angry because he "couldn't do the same stuff" as before; instead I had a little boy who was excited about his accomplishments. "Wasn't that great?" he asked me, "Did you see all that stuff I did?", "Yes I did" I told him, "I loved how you did your best."
I was also impressed by the teamwork of Connor's class. There were no long faces because they "lost" the relay, instead I heard lots of "Good Job Connor!" and "You did it!". Again, Amazing.
Well needless to say after a long Tuesday, Connor woke up sore this morning. His little legs had a big work out.
Today Connor went to library, did math, and films. The class was so energized by their teacher. Their personal favorite had to be "Build a Man" (Hangman). What a super creative way for kids to learn about letters and spelling.
Miss Horn is like a Rock Star to those kids. They have such admiration for her. She's like a perfect sweet and sour sauce, Just enough sweet to balance the sour.
I am continually impressed by the Teacher's and staff at Connor's school. They continue to do more with less, they are creative, and fun. Yet firm and have high expectations.
Visiting that classroom always renews my hope for the future. Not just my son's future but our future as a country. There is so much good to still be found in young children. So many great qualities to encourage and celebrate.
If these kids were in a dark room they would truly shine.
Monday, December 14, 2009
Party with his Chemo Pal
Connor had a great party on Sunday with his Chemo pal Nick. Connor was able to meet some of the wonderful retired Trailblazers who volunteered their time to make a special day for approximately 300 area kids.
Connor's counts went down today, 
but they weren't low enough to prevent him from going to School this week. Hopefully he can participate in some of the fun activities this week.
but they weren't low enough to prevent him from going to School this week. Hopefully he can participate in some of the fun activities this week. Connor donated some of his DVD players to Legacy Today. The Social worker said they already have a candidate that is ready to start treatment. Although they can't give us their name, we have included our contact information and hope to be able to put a photo on Connor's Fan site for each recipient. Thank you to everyone that has helped/and continues to help with his project.
Saturday, December 12, 2009
Friends, Food and no Freezing rain
We were expecting freezing rain and possibly snow today, so we decided to take a rain check on driving to Portland to see the play. Unfortunately the freezing rain never came.
In lieu of missing the play we had a wonderful time with our friends tonight. Always good times, and good laughs.
Connor received another fun surprise gift: a cookie cutter set, with sprinkles and a cool tie dyed apron. Mommy and Daddy got some mugs with hot cocoa mix. These gifts are so kind and thoughtful. We will be enjoying some quiet time this evening with our feet up !
Tomorrow Connor has his Christmas Party with Chemo Pal Nick he's really looking forward to it.
Best Part of today: Greg FINALLY won his first game of Catan
In lieu of missing the play we had a wonderful time with our friends tonight. Always good times, and good laughs.
Connor received another fun surprise gift: a cookie cutter set, with sprinkles and a cool tie dyed apron. Mommy and Daddy got some mugs with hot cocoa mix. These gifts are so kind and thoughtful. We will be enjoying some quiet time this evening with our feet up !
Tomorrow Connor has his Christmas Party with Chemo Pal Nick he's really looking forward to it.
Best Part of today: Greg FINALLY won his first game of Catan
Thursday, December 10, 2009
Mail time
Christmas is forever, not for just one day, for loving, sharing, giving are not to put away,
like bells and lights and tinsel, in some box put upon a shelf. The good you do for others is good you do yourself... - Norman Wesley Brooks
Connor has received his third anonymous gift this week (Thank you for the awesome gifts anonymous sender(s)!). Greg of course has been racking his brain trying to figure out who they're from, but it is clear they are from "someone who cares".
I also wanted to send out a big Hug and Thank you to our friend Stella. In lieu of birthday gifts her generous family collected donations on behalf of Connor's DVD player project, he was able to purchase two more DVD's players. A big thank you to Stella's friends and family!
Another big thank you to everyone who has purchased his cards and made donations. Those children and families will be so appreciative.
Connor has a big weekend planned. On Saturday we are attending a live theater performance of a Christmas Carol, and on Sunday Connor is going to a Christmas Party with Chemo Pal Nick (both sponsored by CCA). Both will be great opportunities for him to meet other children affected by Cancer.
Although this tragedy has affected us this year, my heart feels so full. I feel closer to family, friends, strangers, just life in general. So many things touch my heart every day. I appreciate so many more things.
We received some unsettling news from Greg's work, there will be some layoffs. It's not clear how many,when, or who at this time. Greg's co-workers have always been so kind to us, they were some of the 1st to welcome us to this community. He works with many kind and compassionate people. We understand that times are hard for many businesses, and people right now. We hope and pray that these times will get better, and we can offer what we can for those in need.
Now that I'm a mom I realize how important it is to create new traditions as well as honor some of the old during this holiday Season. For this month I've marked some activities that I would like our family to share during the season.
What about you? What are some of your traditions?
Today's Tradition: Making an Ornament
Something funny Connor said: "Mom I LOVE playing Star Wars with you, It's sooooo much easier to win, than when I play against Dad".
The best part of my day: Looking at old photos with Connor. We came across a photo of my wedding dress during my fitting and he said "Mom, you looked so beautiful in that dress, you should wear that more often"
like bells and lights and tinsel, in some box put upon a shelf. The good you do for others is good you do yourself... - Norman Wesley Brooks
Connor has received his third anonymous gift this week (Thank you for the awesome gifts anonymous sender(s)!). Greg of course has been racking his brain trying to figure out who they're from, but it is clear they are from "someone who cares".
I also wanted to send out a big Hug and Thank you to our friend Stella. In lieu of birthday gifts her generous family collected donations on behalf of Connor's DVD player project, he was able to purchase two more DVD's players. A big thank you to Stella's friends and family!
Another big thank you to everyone who has purchased his cards and made donations. Those children and families will be so appreciative.
Connor has a big weekend planned. On Saturday we are attending a live theater performance of a Christmas Carol, and on Sunday Connor is going to a Christmas Party with Chemo Pal Nick (both sponsored by CCA). Both will be great opportunities for him to meet other children affected by Cancer.
Although this tragedy has affected us this year, my heart feels so full. I feel closer to family, friends, strangers, just life in general. So many things touch my heart every day. I appreciate so many more things.
We received some unsettling news from Greg's work, there will be some layoffs. It's not clear how many,when, or who at this time. Greg's co-workers have always been so kind to us, they were some of the 1st to welcome us to this community. He works with many kind and compassionate people. We understand that times are hard for many businesses, and people right now. We hope and pray that these times will get better, and we can offer what we can for those in need.
Now that I'm a mom I realize how important it is to create new traditions as well as honor some of the old during this holiday Season. For this month I've marked some activities that I would like our family to share during the season.
What about you? What are some of your traditions?
Today's Tradition: Making an Ornament
Something funny Connor said: "Mom I LOVE playing Star Wars with you, It's sooooo much easier to win, than when I play against Dad".
The best part of my day: Looking at old photos with Connor. We came across a photo of my wedding dress during my fitting and he said "Mom, you looked so beautiful in that dress, you should wear that more often"
Tuesday, December 8, 2009
He lost another ....
I can't believe I forgot to report Connor lost his tooth on Sunday! All is well the tooth fairy came and picked it up.
Connor and I went Christmas Shopping today for Greg. The stuff he picks out for Greg is always so entertaining.
Connor had a nice tutoring session with Miss Horn today, after that we met some friends for Dinner. Connor scored some new vending machine tattoos.
On our way home Connor asked if he could stop at "that store that is open 7 days a week! to get a Popsicle". After a game of 20 questions we finally figured out he meant Rose Valley Market. He scored a crunch ice cream bar and I had a fudge bar. I know it's pretty crazy to be eating a Popsicle when it's 25 degrees outside.
Something Funny Connor Said today:
On the way home Connor said "Mommy I want you to be with me forever"
"Ahhh that's so sweet Connor" I said
"Can I have a bite of your ice cream now?" He said.
The best part of the day:
Shopping with my little dude.
For Connor: Having teacher come over
Connor and I went Christmas Shopping today for Greg. The stuff he picks out for Greg is always so entertaining.
Connor had a nice tutoring session with Miss Horn today, after that we met some friends for Dinner. Connor scored some new vending machine tattoos.
On our way home Connor asked if he could stop at "that store that is open 7 days a week! to get a Popsicle". After a game of 20 questions we finally figured out he meant Rose Valley Market. He scored a crunch ice cream bar and I had a fudge bar. I know it's pretty crazy to be eating a Popsicle when it's 25 degrees outside.
Something Funny Connor Said today:
On the way home Connor said "Mommy I want you to be with me forever"
"Ahhh that's so sweet Connor" I said
"Can I have a bite of your ice cream now?" He said.
The best part of the day:
Shopping with my little dude.
For Connor: Having teacher come over
Monday, December 7, 2009
Counts are still up
Connor had a nice weekend. It was great that his counts were up (we were able to get out a little and do some shopping).
He had an appointment for a blood draw this afternoon. It was strange going back to the hospital after being off for a whole week. Connor was a little nervous about having his port accessed again, but we had some pleasant distraction from Chemo Pal Nick.
Chemo Pal Nick stocked up on some new games and we enjoyed a few rounds of crazy 8's and UNO while waiting for the doctor and the lab results. I can't express enough how wonderful the Chemo Pal program is. CCA (Children's Cancer Association) really does a lot of great things for Children and Families affected by Cancer.
Connor's counts were up again this week and so was his weight (Hooray!!), although he would normally be able to go to School this week, some students in his class have recently received the H1N1 flu mist which will prevent him from attending School for 5 days. Miss Horn is keeping us posted, and although he is disappointed about not seeing his friends, we understand the precaution and appreciate the parents in his class notifying his teacher.
Connor is scheduled for a routine MRI for his head and spine on 12/29 please pray and send good thoughts his way that the scans are clear. On 12/30 he will have another hearing test. Some of the chemo causes hearing loss, so they will be establishing a base line.
Connor's 1st round of Maintenance Chemo will be on January 4th. He will be admitted to the hospital for an overnight stay. He will receive 6 hours of the Chemo drug Cisplatin followed by 24 hours of fluid.
The best thing about today: Connor feeling good
Something exciting: Greg found a shortcut
He had an appointment for a blood draw this afternoon. It was strange going back to the hospital after being off for a whole week. Connor was a little nervous about having his port accessed again, but we had some pleasant distraction from Chemo Pal Nick.
Chemo Pal Nick stocked up on some new games and we enjoyed a few rounds of crazy 8's and UNO while waiting for the doctor and the lab results. I can't express enough how wonderful the Chemo Pal program is. CCA (Children's Cancer Association) really does a lot of great things for Children and Families affected by Cancer.
Connor's counts were up again this week and so was his weight (Hooray!!), although he would normally be able to go to School this week, some students in his class have recently received the H1N1 flu mist which will prevent him from attending School for 5 days. Miss Horn is keeping us posted, and although he is disappointed about not seeing his friends, we understand the precaution and appreciate the parents in his class notifying his teacher.
Connor is scheduled for a routine MRI for his head and spine on 12/29 please pray and send good thoughts his way that the scans are clear. On 12/30 he will have another hearing test. Some of the chemo causes hearing loss, so they will be establishing a base line.
Connor's 1st round of Maintenance Chemo will be on January 4th. He will be admitted to the hospital for an overnight stay. He will receive 6 hours of the Chemo drug Cisplatin followed by 24 hours of fluid.
The best thing about today: Connor feeling good
Something exciting: Greg found a shortcut
Friday, December 4, 2009
Brrrr it was cold today ..
It was a busy day for Connor yesterday. He had another great day at School. After School we met with his local doctor to touch bases, It's was our first visit since his diagnosis, so we had a lot to catch up on. After his appointment he had a tutoring session with Miss Horn. He went to bed pretty exhausted.
By the feel of things it's almost as if Winter has arrived early, I think it's time to unearth the snow gear.
Connor was able to visit his Dad at work for lunch today. That has always been a special treat for Connor since he was little. He loves getting a special treat from the vending machine at work. Today was extra special, Greg's friend at work gave him a super cool Clone trooper helmet set. After I was able to remove it from the packaging, He spent about 30 minutes shooting foam darts at his action figures (at least it wasn't at me lol).
I want to thank everyone who have purchased Connor's cards. Through your generous donations he has enough to purchase 2 DVD players and has a great start towards a third. As the Social workers have a child that meet the criteria they will be able to present the DVD players to them, and hopefully make that families daily trip to radiation a little easier.
We will be retiring some of Connor's cards at the end of the month, and will be replacing them with new designs soon.
Many people have been so generous to our family, and again I wanted to extend our Thanks.
As Christmas approaches many people have asked what they can send Connor and our family this year:
For Connor:
Books (Please feel free to write an short message on the inside cover)
Gift Cards to Blockbuster (He loves to rent games from there)
Gift Cards to Toys R US (He really enjoys taking a day trip there)
For Us:
A Christmas Ornament from your family
Gift Cards to local stores (Safeway or Wal mart) to help with our misc. expenses
Connor has another loose tooth, I expect it to fall out (or be pulled out lol) within the next week.
I hope everyone has a lovely weekend, and takes some time out to enjoy the sights of the season.
By the feel of things it's almost as if Winter has arrived early, I think it's time to unearth the snow gear.
Connor was able to visit his Dad at work for lunch today. That has always been a special treat for Connor since he was little. He loves getting a special treat from the vending machine at work. Today was extra special, Greg's friend at work gave him a super cool Clone trooper helmet set. After I was able to remove it from the packaging, He spent about 30 minutes shooting foam darts at his action figures (at least it wasn't at me lol).
I want to thank everyone who have purchased Connor's cards. Through your generous donations he has enough to purchase 2 DVD players and has a great start towards a third. As the Social workers have a child that meet the criteria they will be able to present the DVD players to them, and hopefully make that families daily trip to radiation a little easier.
We will be retiring some of Connor's cards at the end of the month, and will be replacing them with new designs soon.
Many people have been so generous to our family, and again I wanted to extend our Thanks.
As Christmas approaches many people have asked what they can send Connor and our family this year:
For Connor:
Books (Please feel free to write an short message on the inside cover)
Gift Cards to Blockbuster (He loves to rent games from there)
Gift Cards to Toys R US (He really enjoys taking a day trip there)
For Us:
A Christmas Ornament from your family
Gift Cards to local stores (Safeway or Wal mart) to help with our misc. expenses
Connor has another loose tooth, I expect it to fall out (or be pulled out lol) within the next week.
I hope everyone has a lovely weekend, and takes some time out to enjoy the sights of the season.
Wednesday, December 2, 2009
"That was a great day mom!!!"
Connor slept great last night. We took a quick trip to Fred Meyer to pick up Connor's prescriptions and then we were off to School.
We brought Connor's walker I wasn't really sure exactly what he would need for support. When we got there the class was working on workbooks and reading. Connor opened his workbook and started working on a worksheet, then he joined his group for reading.
After reading he went to recess. He did a great job navigating the playground without his walker. He was so excited to see his friends, he showed me around the playground. Lots of kids came up to him, and told him they were excited to see him back. It was nice watching him have "normal" 6 year old interactions with his peers (Chatting about Christmas, and Thanksgiving, and family vacations, my dad this my mom that). I know he has been missing other kids.
After recess he went to the library. The Librarian read a darling book called "Snowmen at Christmas" (lovely illustrations). Connor picked out a Military Plane book, and the Librarian was very kind to lend him some extra books to read at home, she always picks great books, he loves Library time.
Connor decided he wanted to stay through lunch and second recess. By second recess he left me in the dust and was off with his friends. He played 4 square and caught up on a lot of much needed socializing.
It was very aparent how well Connor's teacher has educated her class on Connor's disease. They all treated him like "normal". They made him feel very welcomed, but not overwhelmed. At lunch and recess he got several looks from other kids that weren't in his class, but he took it all in stride. I asked him if he was concerned about that, and he told me "No mom it's ok, they probably just don't know that I'm alright".
I could tell he did his best today, and that he was going to be just fine.
At recess a little girl came up to me and said "I'm very happy that Connor is back, it's so great that he can walk around now and doesn't need a wheelchair".
I agreed with her and told her how hard Connor was working to get his strength back.
"It's sad he lost his hair", she said "I hope it comes back"
"Oh it should," I told her, "but honestly he's happy he doesn't have to brush it"
She laughed and then said, "but the best thing is.... that he's O.K"
And then I had to hide my face to wipe the tears away, because she got it.
A 6 year old nailed it on the head .. the BEST thing is that he's O.K
On the way out of the doors Connor said, "That was a GREAT day mom", and it was.
At home we cuddled up on the couch with a big blanket, a bowl of popcorn and a movie, he was exhausted, but sooo happy.
The best part of my day: School, it was a huge boost to Connor's Self Confidence. It relieved a lot of anxiety that he had about things he wasn't sure if he would be able to do or not.
Something I was thankful for: Miss Horn and all the other Teacher's and Staff at Connor's School, and the kids who just "get it".
We brought Connor's walker I wasn't really sure exactly what he would need for support. When we got there the class was working on workbooks and reading. Connor opened his workbook and started working on a worksheet, then he joined his group for reading.
After reading he went to recess. He did a great job navigating the playground without his walker. He was so excited to see his friends, he showed me around the playground. Lots of kids came up to him, and told him they were excited to see him back. It was nice watching him have "normal" 6 year old interactions with his peers (Chatting about Christmas, and Thanksgiving, and family vacations, my dad this my mom that). I know he has been missing other kids.
After recess he went to the library. The Librarian read a darling book called "Snowmen at Christmas" (lovely illustrations). Connor picked out a Military Plane book, and the Librarian was very kind to lend him some extra books to read at home, she always picks great books, he loves Library time.
Connor decided he wanted to stay through lunch and second recess. By second recess he left me in the dust and was off with his friends. He played 4 square and caught up on a lot of much needed socializing.
It was very aparent how well Connor's teacher has educated her class on Connor's disease. They all treated him like "normal". They made him feel very welcomed, but not overwhelmed. At lunch and recess he got several looks from other kids that weren't in his class, but he took it all in stride. I asked him if he was concerned about that, and he told me "No mom it's ok, they probably just don't know that I'm alright".
I could tell he did his best today, and that he was going to be just fine.
At recess a little girl came up to me and said "I'm very happy that Connor is back, it's so great that he can walk around now and doesn't need a wheelchair".
I agreed with her and told her how hard Connor was working to get his strength back.
"It's sad he lost his hair", she said "I hope it comes back"
"Oh it should," I told her, "but honestly he's happy he doesn't have to brush it"
She laughed and then said, "but the best thing is.... that he's O.K"
And then I had to hide my face to wipe the tears away, because she got it.
A 6 year old nailed it on the head .. the BEST thing is that he's O.K
On the way out of the doors Connor said, "That was a GREAT day mom", and it was.
At home we cuddled up on the couch with a big blanket, a bowl of popcorn and a movie, he was exhausted, but sooo happy.
The best part of my day: School, it was a huge boost to Connor's Self Confidence. It relieved a lot of anxiety that he had about things he wasn't sure if he would be able to do or not.
Something I was thankful for: Miss Horn and all the other Teacher's and Staff at Connor's School, and the kids who just "get it".
Monday, November 30, 2009
We're done with radiation
We had a lovely 4 day weekend. We enjoyed the normal things of the Season. Roasting our Turkey, putting up some Christmas decorations, and driving around town looking at all the lights that are already up while listening to Christmas music on the radio. This year we had a virtual Thanksgiving with some of our family in CA using an online service called Skype. Connor thought that was so exciting. 
We said our goodbyes and thank-yous to the wonderful staff at the Radiation department. Although we will miss them all we won't be missing the daily drive to the hospital. 
As we waited for Connor to wake up on his last day of radiation treatment Greg and I felt very blessed. There were so many wonderful people from the Radiation & Anaesthesia team that have touched his life (and ours). They have taken such good care of him these last 6 weeks.After Connor woke up (which went very well the last day) we met with Chemo Pal Nick. Connor always looks forward to his time with him. We played more Go Fish and Old Maid.
Connor's blood counts were up today (yay!!!). His total count was up to 958. Looks like we'll be able to head to school this week!
Connor was de-accessed, and we picked up a Video Game rental to Celebrate. Connor also requested a "Party" so we had cupcakes and he blew out 6 candles (to represent) the last 6 weeks of treatment.
For December he only needs to go in once a week to have his blood tested. We are looking forward to this much needed break.The Best part of the day: Completing Treatment, Celebrating Connor's accomplishment, and moving forward with life.
Wednesday, November 25, 2009
Thankful
Although we have many things to be Thankful for this year I wanted to take a few moments to focus on what matters most to us lately:
People (in no particular order):
We are thankful for the wonderful caring doctors and medical professionals at Legacy Emanuel. We're thankful for the doctor's who motivate my son every morning with "Pirate Gold", The crazy jokes they tell (that only a 6 year old would love), the Nurses that ask my son if he wants a band aid. The staff that keep the coffee pots filled for the parents that are operating on less than 5 hours of sleep. The surgeon's and staff that take time out of their busy schedule to ask how Connor is doing while passing in the halls.
We are thankful for the wonderful friends and acquaintances that we have met here in Oregon. The people who have made us feel part of their family. The good people who offer help, prayers and love. The people who provide a pleasant distraction during this crazy time in our lives. The one's who still offer their help, even when we are at a loss for what we need help with. The people who support Connor.
We are thankful for old friends who let us know we are still in their thoughts no matter how far away we are or how long it's been since we've seen them last.
We are thankful to people who continue to help Connor and support him during this journey, and all of those who have crossed his path and touched his life.
We are thankful to all of the children who have shown Connor compassion, kindness and love.
We are thankful for family, who hold us up emotionally. We know even though we are far in distance we are still close at heart.
We are thankful for all of you, who care enough to read this and follow Connor's treatment.
We are thankful for our son who makes us laugh everyday, who reminds us about courage and strength, and compassion, and hope.
People (in no particular order):
We are thankful for the wonderful caring doctors and medical professionals at Legacy Emanuel. We're thankful for the doctor's who motivate my son every morning with "Pirate Gold", The crazy jokes they tell (that only a 6 year old would love), the Nurses that ask my son if he wants a band aid. The staff that keep the coffee pots filled for the parents that are operating on less than 5 hours of sleep. The surgeon's and staff that take time out of their busy schedule to ask how Connor is doing while passing in the halls.
We are thankful for the wonderful friends and acquaintances that we have met here in Oregon. The people who have made us feel part of their family. The good people who offer help, prayers and love. The people who provide a pleasant distraction during this crazy time in our lives. The one's who still offer their help, even when we are at a loss for what we need help with. The people who support Connor.
We are thankful for old friends who let us know we are still in their thoughts no matter how far away we are or how long it's been since we've seen them last.
We are thankful to people who continue to help Connor and support him during this journey, and all of those who have crossed his path and touched his life.
We are thankful to all of the children who have shown Connor compassion, kindness and love.
We are thankful for family, who hold us up emotionally. We know even though we are far in distance we are still close at heart.
We are thankful for all of you, who care enough to read this and follow Connor's treatment.
We are thankful for our son who makes us laugh everyday, who reminds us about courage and strength, and compassion, and hope.
29 radiation treatments....
1 left. Today went off without a hitch. It was our last day with Dr. Rose (Connor's anaesthesiologist, we will miss him very much).
I wrote this excerpt about radiation treatment a few days after Connor had just started. It seems so long ago.
Radiation Treatment: The Ride of your life
Our family got in line on October 19th 2009.
We didn't choose to get in line
There was no option to go around.
I wanted to raise my hand to get out of line, but everyone had their hand raised and it did not seem to matter.
"Excuse me", I asked the family in front of us,
"Do you know how we can get around ?"
"There is no way around," they said. "We all must wait."
"Maybe we could trade with someone," I offered.
"Trust me, there is no one who wants to volunteer to stand in this line," They said.
On our way towards the front of the line I saw a roller coaster and a big sign that read:
WARNING You may experience the following emotions: Loss, Grief, Anger, Pain, Helplessness, Sadness and many others.
As I waited to get on the ride my knees began to buckle, I felt like I had been waiting in line forever. I felt nauseous and lightheaded. I wanted to scream, and cry and bang my fists on the floor. I didn't want to get on this ride. It really wasn't fair.
So many people came to talk to me while I waited in line, but I was deaf to their words. Many people offered to stand by my side, and even though they couldn't ride with me they eased my fears.
As we were seated I trembled with fear. I was so scared of the unknown. The roller coaster took off. The first climb was the scariest, we didn't know what to expect. After we navigated a few turns it got easier. The highs were full of excitement, happiness, and joy. The lows were frightening, unbearable, and exhausting.
As we got closer to the end I felt such comfort, and relief. The ride took us places we have never been before. The ride was turbulent, but there were also times that we actually enjoyed the ride.
We finally made our way to the end. We had some bumps and bruises, but we survived. We stepped off empowered, Brave, Strong, Thankful and full of Hope.
I wrote this excerpt about radiation treatment a few days after Connor had just started. It seems so long ago.
Radiation Treatment: The Ride of your life
Our family got in line on October 19th 2009.
We didn't choose to get in line
There was no option to go around.
I wanted to raise my hand to get out of line, but everyone had their hand raised and it did not seem to matter.
"Excuse me", I asked the family in front of us,
"Do you know how we can get around ?"
"There is no way around," they said. "We all must wait."
"Maybe we could trade with someone," I offered.
"Trust me, there is no one who wants to volunteer to stand in this line," They said.
On our way towards the front of the line I saw a roller coaster and a big sign that read:
WARNING You may experience the following emotions: Loss, Grief, Anger, Pain, Helplessness, Sadness and many others.
As I waited to get on the ride my knees began to buckle, I felt like I had been waiting in line forever. I felt nauseous and lightheaded. I wanted to scream, and cry and bang my fists on the floor. I didn't want to get on this ride. It really wasn't fair.
So many people came to talk to me while I waited in line, but I was deaf to their words. Many people offered to stand by my side, and even though they couldn't ride with me they eased my fears.
As we were seated I trembled with fear. I was so scared of the unknown. The roller coaster took off. The first climb was the scariest, we didn't know what to expect. After we navigated a few turns it got easier. The highs were full of excitement, happiness, and joy. The lows were frightening, unbearable, and exhausting.
As we got closer to the end I felt such comfort, and relief. The ride took us places we have never been before. The ride was turbulent, but there were also times that we actually enjoyed the ride.
We finally made our way to the end. We had some bumps and bruises, but we survived. We stepped off empowered, Brave, Strong, Thankful and full of Hope.
We're down to the final 2 ....
Radiation treatments that is.
Can you believe it? Neither can I.
Chemo on Monday went well. Thanks for all of your thoughts and prayers. Connor gained weight, and his total ANC count went from 250 to 490. It's not recommended that he be in large groups of people (or School) with a count under 500, but we were happy to see an improvement.
Best of all Connor is getting back to his usual self. Although he still is unsteady, has some left side weakness, and has issues with his eyes aligning he continues to make great progress every day. We enjoyed a game of basketball (He was able to play standing up without holding onto anything or needing any support), he played some Frisbee (he is still so much better at that than I am), and for the first time since surgery he was able to climb up his play structure and go down the slide.
It's really amazing as I look back to just a few months ago when I wondered if he would ever even walk on his own again. Today I revel in the fact he can walk down the stairs and navigate our bumpy hilly back yard with no assistance.
Today is our "Friday" and we are sure looking forward to enjoying 4 days off from the Hospital.
After Connor's last day of radiation (the 30th) he will have 4 weeks off from ALL treatment. Our only trips during his break will be to go in once a week to have his port accessed and blood drawn, and after Christmas week he will have a Brain and Spinal MRI (Please pray for good results!).
We're hoping his ANC counts go up during his December "break" so that he can enjoy some School time fun with his friends.
The best part of my day: Watching my son regain his confidence. Seeing the complete joy on his face when he made a basket. Watching him take a step back to try it from a little farther away. Smiling when he said "Hey Mom, Don't you think it's great I'm getting back to normal?" (Mommy can't even describe how GREAT she thinks it is.. )
Can you believe it? Neither can I.
Chemo on Monday went well. Thanks for all of your thoughts and prayers. Connor gained weight, and his total ANC count went from 250 to 490. It's not recommended that he be in large groups of people (or School) with a count under 500, but we were happy to see an improvement.
Best of all Connor is getting back to his usual self. Although he still is unsteady, has some left side weakness, and has issues with his eyes aligning he continues to make great progress every day. We enjoyed a game of basketball (He was able to play standing up without holding onto anything or needing any support), he played some Frisbee (he is still so much better at that than I am), and for the first time since surgery he was able to climb up his play structure and go down the slide.
It's really amazing as I look back to just a few months ago when I wondered if he would ever even walk on his own again. Today I revel in the fact he can walk down the stairs and navigate our bumpy hilly back yard with no assistance.
Today is our "Friday" and we are sure looking forward to enjoying 4 days off from the Hospital.
After Connor's last day of radiation (the 30th) he will have 4 weeks off from ALL treatment. Our only trips during his break will be to go in once a week to have his port accessed and blood drawn, and after Christmas week he will have a Brain and Spinal MRI (Please pray for good results!).
We're hoping his ANC counts go up during his December "break" so that he can enjoy some School time fun with his friends.
The best part of my day: Watching my son regain his confidence. Seeing the complete joy on his face when he made a basket. Watching him take a step back to try it from a little farther away. Smiling when he said "Hey Mom, Don't you think it's great I'm getting back to normal?" (Mommy can't even describe how GREAT she thinks it is.. )
Monday, November 23, 2009
Show me one hand
Now put down your thumb... that's 4 .. that's right only 4 more radiation treatments !! Can I get a Whoo Hoo!!!
We have treatment today, Tuesday, Wed and then Monday the 30th !! We get to enjoy a 4 day Thanksgiving break.
After Radiation we have our usual trip to get Connor's Vincristine. We are loaded with questions. Now that Radiation is stopping and we will be starting the maintenance phase of Chemo in January we need to clarify the process a little more.
Connor has sure been enjoying reading. He reads everywhere we go. Road Signs, Menu's, Posters, and Lately Recipes. Connor is definitely ready for the holidays. His #1 request baking cookies (Here is your advance warning mom he really wants apple pie!). So we made a cake together this week. He read all of the ingredients and the directions a step at a time. He did great. Then we got to the eggs (which can be a bit of a problem since he's still hesitant about using his left hand which still shakes), but he cracked it like a pro. Then he throws both halves of the shell in the bowl. "Hmm," I said. Why did you do that?" ... "Mom it said 3 WHOLE eggs, so I put in the whole thing", he exclaimed. The English language is interesting.
I was able to get out with a friend to visit some craft stores (It was so nice getting out of the bubble for a little bit). We had some time to putter around the house to prepare for the holidays.
We're hoping his ANC count goes up today, and his weight remains steady (send the good blood and weight vibes his way).
Best thing about this weekend: Breakfast with the family.
Shocking: Connor now has blue hair, with spikes.
A big thanks: To everyone who has purchased his Cards and Donated to his giving project.
We have treatment today, Tuesday, Wed and then Monday the 30th !! We get to enjoy a 4 day Thanksgiving break.
After Radiation we have our usual trip to get Connor's Vincristine. We are loaded with questions. Now that Radiation is stopping and we will be starting the maintenance phase of Chemo in January we need to clarify the process a little more.
Connor has sure been enjoying reading. He reads everywhere we go. Road Signs, Menu's, Posters, and Lately Recipes. Connor is definitely ready for the holidays. His #1 request baking cookies (Here is your advance warning mom he really wants apple pie!). So we made a cake together this week. He read all of the ingredients and the directions a step at a time. He did great. Then we got to the eggs (which can be a bit of a problem since he's still hesitant about using his left hand which still shakes), but he cracked it like a pro. Then he throws both halves of the shell in the bowl. "Hmm," I said. Why did you do that?" ... "Mom it said 3 WHOLE eggs, so I put in the whole thing", he exclaimed. The English language is interesting.
I was able to get out with a friend to visit some craft stores (It was so nice getting out of the bubble for a little bit). We had some time to putter around the house to prepare for the holidays.
We're hoping his ANC count goes up today, and his weight remains steady (send the good blood and weight vibes his way).
Best thing about this weekend: Breakfast with the family.
Shocking: Connor now has blue hair, with spikes.
A big thanks: To everyone who has purchased his Cards and Donated to his giving project.
Thursday, November 19, 2009
Do you see it?
I was wondering if you see the good in people? Since our world was rocked on 9/19 I've been amazed by all the good I see around me. Was it here before? probably. Did I embrace it as much as I do now? Not nearly enough. We feel warmly wrapped in a blanket of love. Family, friends and even complete strangers consistently go out of their way to show they care. More importantly people let us know we are in their thoughts, and that they are following Connor's journey. We feel less alone in the march with all of you around to hold us up.
Even you, that person that religiously reads my blog, that I may not know, that never leaves a comment, but comes here everyday, helps me.
As we get prepared for Connor's 24th day of radiation, my body aches with anticipation to complete this phase of treatment. At the same time I tremble with fear, since radiation has become so routine, and the next phase of treatment (Chemotherapy) becomes the unknown. I know that it too will become (albeit unfortunate) familiar.
My son was in all his glory today. Laughing, cracking jokes, full of excitement, inquisitive, and loving. We definitely celebrate the good days like we had today.
I stare at my son sometimes (he hates it by the way) and I try to take a mental picture of him right now, this day, this moment. I know that moment is the only one that matters.
I see a boy who doesn't dwell on what is happening to him, but rather a brave Jedi who embraces his life no matter what it has become, or has been placed before him.
At the library the librarian started talking to Connor about his book selection (I think he checked out the whole children's section that day, but mostly dinosaur books). "I see you like dinosaurs", she said. "Yes, he said. You see I'm an explorer, and I like to explore things, I like to search for rocks and treasure". "That sounds exciting", she said "Yes it is. Sorry I can't talk anymore, my throat is dry because I just had Radiation".
So tonight I ask that you embrace your life. See the good in people around you. Take mental pictures of those you love. Tackle the obstacles that are thrown in your path (as best you can), and explore life.
Tuesday, November 17, 2009
we're down to 8 ...
As we headed to Portland today and I looked out the window I couldn't help but smile. Although Connor still has a long journey ahead of him, we are looking forward to celebrating our last day of radiation treatment. When Connor completes his 30th day we will fill up 30 balloons and let him pop them (so if you hear loud popping it's just us in the backyard !!)
My heart aches when I see new children in the radiation office. It's not a place you want to see new faces.
I wanted to thank everyone for purchasing Connor's cards. Everyone has been so kind. One of Connor's nurses has offered to include a basket of his cards on her craft table at the hospitals upcoming bazaar.
His goal is to sell at least 40 cards and Donate a DVD player before Christmas.
Connor was pretty sleepy after treatment today. He took a long nap on the couch after we got home. We spent the rest of the day doing some art, playing UNO, taking a short walk and relaxing.
His appetite is improving, and he was real fond of "breakfast" for dinner tonight. He ate extra maple sausages.
The best part of our day
Sitting and watching our sweet sweet boy sleep, and get some much needed rest.
My heart aches when I see new children in the radiation office. It's not a place you want to see new faces.
I wanted to thank everyone for purchasing Connor's cards. Everyone has been so kind. One of Connor's nurses has offered to include a basket of his cards on her craft table at the hospitals upcoming bazaar.
His goal is to sell at least 40 cards and Donate a DVD player before Christmas.
Connor was pretty sleepy after treatment today. He took a long nap on the couch after we got home. We spent the rest of the day doing some art, playing UNO, taking a short walk and relaxing.
His appetite is improving, and he was real fond of "breakfast" for dinner tonight. He ate extra maple sausages.
The best part of our day
Sitting and watching our sweet sweet boy sleep, and get some much needed rest.
Monday, November 16, 2009
9 more radiation treatments left
I'm actually able to see a glimpse of the radiation finish line. When we first started I didn't think that would ever be possible, hearing your child will need 6 weeks of radiation treatment seems like a lifetime when you are in a cloud of the unknown. As things become more familiar it does become easier.
I'm so proud of my son every Monday when he hops up on to the table to get his port accessed, he squeezes his daddy's hand and cracks jokes with the nurse. Then he travels down the hall to the radiation room, hops up on the table, asks for a warm blanket, starts his anaesthesia, rolls over onto his tummy and falls asleep.
He does all that they ask.
Today I accidentally leaned on the big button that shuts the door in the radiation room. That thing is huge I should definitely take a picture of it ! (for those who know me, the fact I did something like that shouldn't surprise anyone lol). The look of panic flashed across my face. The big door closes on it's own and I wasn't sure how to stop it from closing, and for fear of being crushed by the giant door I didn't want to stop it manually. NOTE TO SELF: Push the button again to stop it. (I won't be doing that again, I'll be staying away from that button).
We really enjoyed spending time with Connor's Chemo Pal Nick today. Although he is Connor's Pal, we enjoy the time with Nick as much as he does. We filled a whole hour playing Old Maid and Go Fish.
As we wander around the hospital we are constantly running into various medical personnel who have helped Connor at one point or another since his diagnosis. It's nice to see that these people genuinely care about how he is doing and remember him.
Chemo went off without a hitch, another dose of Vincristine. We are keeping an eye on some coordination problems and eye problems that can be a result of the Vincristine. Connor's white blood count is very low, He shouldn't be around groups of people, so he will be hanging out at home until his counts recover. Although he has completed the radiation to his spine, the effects of radiation are still present and can limit production of white blood cells in his bone marrow.
What made me smile today Connor and Greg spending "Guy time together"
What blew my socks off: That huge wind storm we had today !
The best part of Connor's day: Playing a snowboarding game with his dad
Friday, November 13, 2009
Home sweet home
We finally made it back home yippee !!! Nothing like a night in the hospital to remind you how much you miss your own bed.
Connor had some movement around 7 last night and on-going for every 30 minutes until about midnight. Fortunately he was able to sleep solid from midnight until 7:30 this morning. After radiation we went back to the hospital and resumed his "Golytely" (Which is anything but lightly BTW), and around 5 ish this evening he was acceptable to be discharged.
He's feeling like a million bucks tonight. Totally back to his normal self. Playing Video games against dad right now (and probably dominating the game).
Something funny: The Nurse asked Connor if he would like Ice Chips or a Popsicle, "Yes", he said "I'll have both please, I'll make you work today".
I met with Connor's radiologist and he told me that Connor has been aligning "Beautifully", he was very pleased.
SO DO YOU KNOW WHAT MONDAY IS ? It will be our 20th radiation session (Only 10 more to go !!!!!!)
I hope everyone has a fabulous weekend!
Something I appreciated today: My son's strength, and my husbands love.
Connor had some movement around 7 last night and on-going for every 30 minutes until about midnight. Fortunately he was able to sleep solid from midnight until 7:30 this morning. After radiation we went back to the hospital and resumed his "Golytely" (Which is anything but lightly BTW), and around 5 ish this evening he was acceptable to be discharged.
He's feeling like a million bucks tonight. Totally back to his normal self. Playing Video games against dad right now (and probably dominating the game).
Something funny: The Nurse asked Connor if he would like Ice Chips or a Popsicle, "Yes", he said "I'll have both please, I'll make you work today".
I met with Connor's radiologist and he told me that Connor has been aligning "Beautifully", he was very pleased.
SO DO YOU KNOW WHAT MONDAY IS ? It will be our 20th radiation session (Only 10 more to go !!!!!!)
I hope everyone has a fabulous weekend!
Something I appreciated today: My son's strength, and my husbands love.
Thursday, November 12, 2009
Monkey Business
Connor's Monkey had a great time in P.E today!
Thanks for the update Miss Horn! We just love them!
I'll call them Frank
After I wrote my last blog entry on Monday I definitely should have knocked on wood. The rest of this week has been far from predictable.
WARNING
If you are a little squeamish about gastrointestinal issues you might want to skip today's post.
Tuesday afternoon we found out that Connor's X-rays (from Monday) showed some moderate constipation. We were warned that his chemo drug Vincristine can cause some constipation, but we weren't really aware what a terrible cycle it can really become.
Because of his constipation:
1. He doesn't really want to eat, or drink (which really limits how much oral stool softener he receives).
2. He gets cramping which makes him nauseous (which expells the stool softener before it can effective), and the cramps make it difficult for him to want to walk around (which would normally help with the bowel movement).
On Monday we were advised that the Dr. Wanted to to avoid an enema or suppository for risk of infection.
On Tuesday we were advised to double his Oral stool softener.
On Wednesday we stayed after radiation treatment from 1-5pm. He was given an enema and a suppository and a glass of Miralax. ALL with no luck. We were advised if he had no movement by Thursday AM they would insert a nose tube (under sedation) and we would check in around 10:30 am and spend the day in day treatment while they filled him up with Golytely until he was productive.
So Today: The tube insertion went good. We got over to day treatment and we were advised they wanted to place us in an inpatient room (because those rooms have private restrooms). We were advised it would be about a 3o minute wait. We entertained Connor and told him not to get too comfortable. 30 minutes turned into an hour, which turned into about 3 and a half hours before we got in a room.
The doctor advised us that it would probably take about 4-10 hours for Connor to take in all the liquid. YIKES! He had another x-ray (which was very compacted) So, after a later start than expected, Connor got started and within an hour and a half he got sick and expelled the tube.
He had a second tube placed while he was awake (he was a world class champ !!!!!!!)
So our Schedule will be:
Tonight: Sit and Wait for movement, Spend the night here.
<----------- Where I will be sleeping (definitely not a sleep number bed)
Friday:
2am: The nurse will stop his Golytely (Since he can't have anything in his stomach for Anaesthesia tomorrow morning)
8 am: Go across the street and have Radiation Treatment
10am: Post Radiation Treatment we will come back to our room and finish his "Liquid Magic" and wait for it to do it's thing.
The Child Life specialists are keeping him entertained with lots of video entertainment (and the Verced is keeping him calm).
Note to self: Avoid future constipation issues at ALL costs.
Something funny Connor said: We were talking about Christmas songs and I asked Connor if he could remember the names of all Santa's Reindeer's. "Rudolf", he said. "There are more" I told him. Connor said, "I don't remember their names mom, I'll just call them ALL Frank."
I'm glad that: I packed an emergency overnight bag
I'm thankful: that Connor will be feeling much better in the next few days.
I've added a link to the left if you are interested in purchasing cards. (Thanks to everyone who has been supporting Connor's fundraiser!).
Monday, November 9, 2009
Week 4 of radiation
It seems that our daily activities are becoming somewhat predictable. Our highlight of the day was meeting Connor's Chemo pal (a program sponsored by Children's Cancer Association). Connor's pal is named Nick and he brought a really cool toy bag full of fun toys hand picked for Connor. We played a game of Old Maid, and Connor colored a custom paint job on a race car craft project. Nick will be Connor's pal throughout his Chemo process. It's nice to have some someone break up the monotony of the day, and be a constant friendly face throughout the process.
The Oncologist had Connor take an X-ray to see if she could rule out anything that might be causing his back and tummy cramps. It's possible that he has some constipation from some of his medicines.
It was an extra long day at the hospital, but the ride home was peaceful with Connor looking out the window telling me about all the "Cloud Animals" he saw in the sky.
Some things that made me chuckle:
A Recap of Connor telling our favorite nurse that he could speak to animals.
Candace: "Really? that's awesome!! I need you to come to my house and talk to my cat! He lays on my head and licks my face while I'm trying to sleep".
Connor: "Well you see, it's really easy you just say meow for each length of the word"
Candace: "oh so if I want to say, "Stop licking me", I would say "Meow meowmeow meow"
Connor: "You got it!!!!"
We love Candace!! she SO understands kids (and mommy's and daddy's)
A Recap of Connor telling Dr. (Pirate Gold) Rose about his weekend
Dr. Rose "So what was the BEST thing you did this weekend?"
Connor "I got my H1N1 shot!!!"
Connor declared Dr. Rose the BEST DOCTOR EVER today.
Subscribe to:
Posts (Atom)
