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Wednesday, August 31, 2011

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!

Friday, August 5, 2011

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