Happy Birthday Nanny!

On August 28th we sent kisses and hugs up high while thinking about Nanny who would have celebrated her 89th birthday. We miss you but believe it was you who sent a female and male swan to the lake house to start their family as a sign you are with us. We know you are looking over our family and keeping a loving watch over Colin.

Love and miss you .. Happy Birthday

Neutropenic Week 2

We were hopeful that Colin's blood counts would have rebounded from last week. His appetite and energy levels have been great! Unfortunately, although they did improve, his counts remain below the threshold necessary to safely administer his daily medicines. So, another week off and back next week to try again.....

Rewind - Maddie

With all the craziness over the past couple of weeks we're just getting around to the below update.

Maddie turned one on July 27th!! In between two colds, Maddie had her one year check up on 8/5 and is progressing on schedule. The Doctor was very pleased with her growth and development. She's started to stand on her own and will now take a few steps if you hold her hands. Here's how Maddie and Colin stack up at age one.....

Height - Maddie 29 7/8 inches 75% - Colin 29 inches 25%
Weight - Maddie 22 lbs 13.5 oz 75% - Colin 22 lbs 8 oz 50%
Head - Maddie 46.5 80% - Colin 47.6 90%

As you can see they are following the same pattern so we're very pleased. I tease Dadddy all the time by saying he can't deny Colin as his own and as Maddie's looks transition to toddler I can officially say the same thing about Maddie except for the red hair .. I'll take the credit for that!

Since Maddie's birthday fell on a weekday we decided to hold off and celebrate on a weekend. On Saturday August 14th we baptized Maddie and had a 2 for 1 party back at the house. Bill gave a personal and touching ceremony and once again we couldn't be more thankful. The party was wonderful and watching Maddie eat her first cupcake was hysterical ... at first she wanted nothing to do with it but once she got her first taste it was all over (literally).

Enjoy the photos!!

Peoples Press - Camp Sunshine article

"Our vacation this year was more than your typical dream vacation".

That is the first sentence of the article featured in the People's Press, a local newspaper, about our summer vacation to Camp Sunshine. We were honored to share our story with the community and hope it will draw attention to this amazing organization. You can read the article by clicking the link below. Enjoy!

http://www.peoplespressnews.com/peoplespress/newspaper/article.cfm?img=page6.gif&issue=208

Neutropenia

Today Colin, Mommy and Maddie went down to Yale for his regular blood check (CBC). The drive down was not our normal route because of a truck accident on the Merritt. After attempting to enter the Merritt at two different locations I realized the highway was closed so we took the round about way to 91 and finally made it to Yale only 45 minutes late. For those of you who know Colin this didn't go over very well because we missed a number of sights on the way in and he didn't understand that we were still going to the Doctor. Needless to say he was confused but put on a brave face once we arrived.

They drew his blood, he didn't even flinch may I add, and he was quickly off to gather his pile of books but not before waving to Dylan. We had lots of visitors while waiting which made the wait pass quickly. We were surprised to hear that Colin's counts are low (his ANC is 400, target 750 -1500) so he's neutropenic. The nurse assured us that this is normal and he's probably still fighting off whatever virus he had last week. So, Colin will be chemo free for a week because we will stop all meds until his counts come up to at least 500. Next week we'll check his counts again and resume meds if he's rebounded. In the mean time we will resume caution and will not take Colin to indoor places and will ask that no one come over who is or feels like they are getting sick.

On a lighter note, Colin had a wonderful time with his friend Joshua today. Play time was outside and closely monitored but Colin had a great time racing his big wheel down the side walk and playing on the back deck.

Kacey Rose Foundation Newsletter

It is with great pleasure to have our family featured in the Spring/Summer edition of the Kacey Rose Foundation newsletter. We hope all of you will take a moment to read Colin's story and how the Kacey Rose Foundation has assisted our family. Also featured in this edition is Colin and his clinic buddy Dylan enjoying a book from Kacey's Corner.

http://www.kaceyrose.com/images/Documents/KRF_Summer10_Newsletter.pdf

ER Visit Last Night

Last night Colin and Daddy had to visit the ER because of a fever, cough and throw up. When Colin's temp hit 101.2 the on call Dr asked that we head down to Yale. Arrival time was 8:00 p.m. so teddy and Colin's favorite blanket were in tow. Blood was drawn which confirmed his ANC was 2,000 (that's good). An x-ray was taken which confirmed no pneumonia. A urine test was also performed but it came back contaminated so results were not accurate. The final step was to receive the first dose of antibiotic, administered through his port. Home and in bed at 2:30 a.m.

Colin and Mommy made a return trip this afternoon for the final dose of antibiotic. The good news is that this visit was too the clinic rather than ER. The bad news was that Colin could not play with the other kids at the activity table but rather was restricted to the isolation room to protect the other kids from whatever virus he may have. Mommy was prepared though and asked one of the nurses for a stack of books to keep them both entertained. Colin was also much perkier today, talking and giving high fives to the doctor and nurses. The results from the blood test also came back, confirming there was no bacteria infection which is great news.

A special thank you to a special nurse we met while at the ER. Here's the short story...... "Jane" came in the room at around 12:30 am to check on Colin. She told us that we offered a reminder to her for what is really important in life...You see, she started her shift at midnight, very upset and angry for something her teenage daughter had done earlier that evening. She said that seeing Colin, and talking to him and I reminded her "not to sweat the small stuff". Through teary eyes she said thank you, left a special gift for Colin, and left the room.

Thank you all for your well thoughts and prayers. We continue to be amazed at the amount of love that surrounds us.

3 Month Mark

Yesterday marked the three month mark since Colin began maintenance. This is an important date, as once every three months during this phase of treatment, Colin has a spinal tap where he receives chemotherapy in the spine as a preventative measure.

The morning started with Colin waking up and asking for milk, when we told him he cannot have milk but could have water instead, he said, Mommy-Daddy, doctor today?? He appears to have made the connection with no food in morning means "procedure" days.

His ANC level continues to be in the target range of 750 - 1500, coming in this week at 1200. Mommy and Daddy can't be more proud of our little guy because once again he was such a trooper leading up to an through the procedure. A note for Mommy and Daddy .. we used 2 pain and 2 sleepy and Colin seemed a little more upset then usual, let's try 1 pain and 2 sleepy to start next time.

During the visit he also received his scheduled dose of vincristine through IV. Oh and lets not forget the ugly steroid began yesterday! Will the food of choice be hot dogs, grilled cheese, animal crackers, mac and cheese or something new this week? Post your vote through the comment link below. If you are correct you may receive a special gift from Colin :)

Vacation

Our much anticipated vacation to Camp Sunshine in Maine was more than we ever expected...

Before we began our road trip to Maine, we took a quick trip down to Stamford on Saturday afternoon to celebrate Papa's birthday and saw the Big Apple Circus show. We're not sure who enjoyed it more, Papa and Gigi or Colin and Maddie.

Our trip to Maine started at 8:00 am the next morning and we weren't 15 minutes into the ride when we heard a little voice in the back seat of "the big car" (as Colin put it) telling us he wanted "OUT". Hum, how were we going to entertain Colin and Maddie for 5 hours? Amazingly, they both settled down and after countless books and many snacks, we arrived at Camp Sunshine by early afternoon.

The week was full of activities for the kids as well as the parents. It took some time for Colin to adjust to the daycare (aka Tot Lot). He took to one volunteer, Deb, who won his heart after a few episodes of kicking and screaming when we left the room. She was adamant about giving Mommy and Daddy some free time and worked with Colin one on one for hours. They read, played cars, trains, built castles in the sand box, washed a ton of toys in their make shift toy washer and took many walks in between arts and crafts. As for Maddie, she won everyone's heart and bounced from person to person ... just as she is used to!

Mommy and Daddy were able to enjoy some time with other parents in the same situation while attending a number of parent discussion groups, competing in numerous blooper games, and even a date night!

Pajama breakfast and mascaraed party was fun for all ..

Colin's new favorite activity is mini golf and would take it upon himself to venture to the activity office to pick out his golf club and ball. He loved taking his nap on the top bunk and would do laps on the deck dragging his suitcase in one hand and his elmo flash light in the other as part of his bed time routine. Within 24 hours Colin knew where everything was and would ask to go on the slide as soon as he woke up!

The week also included a special event, with a team from NESN visiting the camp for the first half of the week. They brought a crew of about 12 people and filmed the below segment that was aired during a Red Sox pre game early last week. Colin is the one playing with the trains!

http://www.nesn.com/2010/07/camp-sunshine-giving-support-for-sick-children-and-their-families-.html

As you can see the week was full of fun. We ended our stay as every family staying at Camp Sunshine does with a wish boat launch. Each child decorates a wooden boat and launches it into the pond while making a wish. It was very touching and emotional as we made our family wish.

A special thank you to Dylan and his parents, Grace and Anthony for showing us the ropes while at Camp and for Dylan and his brothers for being great "big brothers" to Colin and Maddie!