What A Month

This week Colin received his monthly IV chemo of vincristine and started the five day stint of steroid. I think we say this every month but it is this one week per month that reminds us how serious 'cancer' is. Within minutes of Colin receiving the chemo he develops dark circles under his eyes. This month we barely made it home before his stomach turned which happens like clock work on these days. If that isn't enough, by mid afternoon the steroid has kicked in and he begins to eat us out of the house with a very whiny but demanding voice.

Two weeks ago Colin's counts were still on the high side (ANC 2,000) but they kept his meds as is. This week his counts haven't budged (ANC 2,100) so they increased one of his oral chemo drugs to 4 pills from 3. So the pill box now looks like this:

IV Vincristine - chemo (once per month)
6MP - oral chemo (one full pill 6x's per week and half a pill 1x per week - Wed)
Methotrexate - oral chemo (4 full pills 1 x per week - Wed)
12ml's Dapsone - pneumonia prevention (daily)
1.75 dex - steroid (2x's per day - 5 days per month)

It's been a whirlwind of a month. We enjoyed our summer to the fullest ... a few highlights are below!

Mike had the honor to become a godfather to our second cousin Ryan. As I watched him hold precious Ryan I saw a spark in his eye that said it all ... he is one proud godfather.

Family camp out in the basement due to Hurricane Irene. We were very fortunate as we did not lose power and had little damage in the neighborhood. We played it safe on Saturday night and made our basement home for the evening. Colin and Maddie were very excited to play in the tent and Colin brought in all the the essentials (flash light, box of books, two blankets, pillow, drink and of course his trust 'Teddy').

Maddie was a little under the weather last week with a 103 fever and no other symptoms. It came on very quick and luckily left pretty quick also. After speaking with the Dr. when the fever spiked we agreed to alternate Tylenol and Motrin (well not Motrin but whatever it's called now) and touch base in the morning. The Dr felt is was viral and we think Colin dodged it. As a cancer parent it's unsettling because we're headed to the ER for 100.4 temp with Colin however with Maddie 103 is no big whoop ... basically it's sit and wait to see what happens. Maddie is back to her chipper self running around here proving she's the princess of the house!

Well today starts childhood cancer month and as we sit hear and reflect on the words 'your child has cancer' ... words a parent never wants to hear ... we're determined to help spread the word. If you haven't already, please "like" the Colin's Crew facebook page as the team will be sharing some powerful information throughout the month.

Happy End of Summer
Happy Back to School

Colin received a package of school supplies from Friends of Karen:
Miss Maddison our princess ... oh so cute
All dressed up!

Proud Godfather!

Colin & Maddie

Colin Update: This week Colin received his monthly IV chemo of vincristine and started the five day steroid cycle. Colin's counts are still high coming in at 3500. If his counts remain high in two weeks, meds will be increased again. Gigi joined us this week and so did Rocky from the Rock Cats. Rocky visited every oncology patient and donated tickets to the children and their families for the August 21 game. Tickets can also be purchased for $8 with a portion of the proceeds going to Colin's Crew benefit Colin's Crew events and children with cancer.

Like clock work later that afternoon Colin got dark circles under his eyes and it's at this point he visually looks sick. Most days he looks like a normal healthy child and you can tell yourself it's just medicine you give him to keep you emotionally stable. Every month at this point it breaks our hearts and puts cancer and this journey into perspective.

Maddie Update: Maddie had her two year check up and we're happy to report she's a happy healthy young girl. Weight 30.2 lbs (90%). Height 34 5/8" (75%). Her hemoglobin was perfect at 12.5. Won't lie.. the days leading up to her appointment were emotional as the pain and thoughts of Colin's diagnosis were front and center. While deep down inside you know everything is fine we're scared by the words 'your child has cancer'.

On a lighter note ...
Rewind: last week Maddison turned two! Our celebration started on her birthday with a visit from Gigi and Papa with pizza and ice cream cake. Followed by some Auntie time while Daddy and Uncle Joe went to the Friday Yankee game. Saturday friends and family gathered to celebrate life, you see we have a ton of summer birthday's so one big party was in store. Finally on Sunday eight cancer families gathered at our house for a summer picnic. While eight of the seventeen children have or had cancer you wouldn't be able to pick them out as they ran around and played all full of energy. They are all true heroes and we enjoy every minute with our 'new family'.


Dr Joe and Rocky:

Colin & Maddie, not so sure about Rocky
Birthday Girl
Proud big brother
A few presents
Our eight heroes
The whole gang all 17 of them

High Counts

Last week, Colin went to clinic and his ANC counts continue to rise. His ANC was at 4,200 and should be between 750-1500 so medications were increased again and we will go back next week for recheck and for meds to adjusted again if needed. (Note to self: 6mp was increased to 1 full pill 5x's per week and half a pill 1x per week - Wed).

On Thursday, we all went to the fundraiser for Camp Rising Sun held at the Owenego Beach Club in Branford. The kids had a blast dancing to music and generally running around. Colin also got to see his Dr. (Dr. Joe) at the event which he was very excited about!

The weekend was fairly low key while we stayed inside as much as possible during the heatwave! Stay cool.

Another LP & Yankee Game

Daddy here ... On Wednesday, Colin had his quarterly lumbar puncture. Colin did very well and didn't even shed a tear during the procedure. Overall, the morning went smoothly and we were ready to go by noon. His ANC remains higher than the range (2500) so we continue with the increased chemo dose and increase again in two weeks if ANC remains high. Colin also started his steroid cycle which seems to be affecting him more. He complains of feeling "ewe" and just isn't himself. Tonight is the last dose so we hope he will be feeling better over the next couple of days.

Colin and Maddie staying at Gigi's and Papa's on Saturday, we drove down for the Yankee game on Saturday...What a game, the stadium was crazy as Jeter hit number 3,ooo! It was a great way to celebrate my 40th birthday. From there we headed to Long Island to one of Heather's college roommates for an 'F Cancer' party as she just beat cancer.

Well Over Due Update

Let's start by saying, no word is good word! We've been enjoying life as you will see by the looong post below!

Medical Update: Yesterday Colin had his routine blood check and his counts remain in range, ANC 1500, so we will increase one of this oral weekly chemo drugs next Wednesday (note to self: methotraxite 3 pills, increased from 2).

Over the past month and a half Colin has been great, his counts have been in range so we've been able to enjoy life to it's fullest. Another note to self: one month ago we increased 6MP to three full pills 3x's per week (Fri, Sat & Sun) and half a pill the remainder. Increased from half a pill 7x's per week.

Camp Sunshine: Camp Sunshine did it again ... relaxed and re-energized while meeting new friends and hanging with old. We all had one thing in common, children with cancer. It didn't matter what kind of cancer or where you are in treatment the fact of the matter is no one truly understands this journey more than another cancer family. Being surrounded by other cancer families for five days gave us a taste of normalcy again. Through the group discussions, challenge course team work, blooper games and karaoke we were over come with the love and support which has given us the renewed strength to keep going strong down this cancer path.

The kids had a blast after they got over the initial anxiety of being left in Tot Lot and Colin is already asking when he can go back and play. The volunteers were wonderful with the kids and we can't wait to take two of them up on their offer ;)

Some memorable moments: Maddie learned how to go down the slide on her own * Colin loved zumba * Karaoke, Like a Virgin & Peaches & Cream sung by dear friends * The challenge course ... "look into my eyes" * Mike's team won the luv cup * Tekki Bar with the CT parents * Small world, met another family from CT and the father works with Mike * Chemo date with Hannah * Our boat launch family wish

We hope to put together a photo video but in the mean time enjoy some of our favorites!

Rewind...Somewhere in the middle of all this we fit in:

A visit to Bushnell Park to kick off the summer with an Organization called the Sunshine Kids. The kids loved the pizza truck, cupcake truck, crafts and lots of bubbles but passed on a carousal ride.

A Saturday morning at Beardsley Zoo. The kids made sure we didn't miss one animal. Colin was particularly interested in the owl and Maddie love the whole experience especially her first ice cream cone!

A date night to celebrate Mike's 40th at Lenny & Joe's. Happy Birthday!!

Locks of Love: On May 22 another cancer mother, mother of one of Colin's chemo buds, held a locks of love event where four of us donated 10 inches. The event brought in over 70 breads and we were honored to be part of it. Sherry, you put on a great event thank you for letting us be a part of it.

Relay For Life, New Fairfield:
A team of 16 walked for 13 hours on June 4th and 5th at the New Fairfield Relay for Life event and we're happy to report the team raised nearly $2,000! While we were hesitant to let Colin walk at the event looking back we couldn't have had it any other way. The evening started with a survivor lap where the four of us walked hand in hand with happy tears while supporters cheered. The second lap was for the care takers and once again the team rallied behind Colin while he made a lasting impression as he rounded the corners on his big wheel! Morgan our cousin coordinated the team and did a fabulous job, thank you Mo!!