Birthday, IGG & UNH

We've been kinda quiet over the last few weeks because we've had a lot to celebrate .. Colin turned five, Mommy had a birthday and Colin's three year post diagnosis.  It was two weeks of celebration with pizza parties, Durham fair, munchkins at school, presents, more presents, cup cake decorating and so much more.

Colin's counts remain in range however over the past few weeks we've been monitoring his IVIG level which is how the body fights off infections.  It's been decreasing over the last month, coming in at 281 last week.  The doctors like it to be around 500 and transfuse under 400 so with the fall and winter season ahead of us we began the process.  The approval process for insurance took a week and he received the transfusion today.

Colin's port  needed a jump start today but Colin was very patient.  In the mean time, we tried a new trick with the Tylenol ... instead of the liquid we crushed a pill and diluted it in his 'med juice' just like we do with this daily oral chemo.  Note to self: worked great!

Once the benadryl kicked in Colin was sleepy but quickly woke when Mikey's Way Foundation came by with their cart full of electronic gadgets.  Colin chose a Leap Pad over a Car computer and quickly put it work!  During the three hour transfusion Colin continued to fight off the sleepy effects of the benadryl by playing Candy Land, four puzzles and a bunch of movies. 

We ended the day at UNH where we were honored and privileged to met the baseball team Colin was partnered with through Team Impact.  http://www.newhavenchargers.com/index.aspx?path=baseball  The guys were great and greeted us with a decorated locker for Colin that included a hat, shirt, helmet, munchkins, oreos and more!  We prepared the team to meet the normal shy Colin and to our surprise they met the wild one.  Perhaps it was the energy from the transfusion, the benadryl, nerves, or a combination of all! Whichever it was, although it was nice to see the energy, both Colin and Maddie's listening skills are something we definitely need to improve on!  Everyone made us feel very welcome and are very excited to spend more time with our new friends!

Colin's Crew Fun & Hope:  thank you to all our friends, family and supporters that came down to the Fun Hope event.  We're excited about scheduling more meal & snack distributions with the funds raised!

Colin's Crew Fun & Hope Event

It's going to be a great day at the park,
hope you can join us!

Tickets Available at the Park!!
Please note: address Rte 150 (not Ward St)

Join Colin's Crew for our 1st

Fun & Hope Event!

Assisting families with childhood cancer
Proceeds will help fund Colin's Crew programs

Big Wheel Racing * Face Painting * Touch a Truck * Family Walk * Magic Show & Much More

(bring your big wheel)

Date/Time: September 23, 12:00pm - 3:00pm
(rain or shine)
Location: Wallingford Linear Trail, Rte 150,
Wallingford, CT
Tickets: $25 per family
(tickets will be sold day of)

Whirlwind kind of a month

It's been a whirlwind kind of a month!

Since our last post Colin had his 21st spinal tap (but whose counting), IV chemo and we survived another round of steroids right before school started.  We once again we're amazed by Colin's strength and bravery, during his procedure he didn't flinch or shed a tear.  He had the perfect combination of sleepy and pain meds where he was giddy and pretty funny.  Once the procedure was done he received a personal magic show during his 30 minutes of resting/laying down.  He was then entertained by the silly clowns in the infusion room while we played for another 30 minutes of monitoring. 

Last week he also had his routine blood check and we're happy to report his counts are in range!

Colin started kindergarten at the beginning of the month and at the very end of our last appointment we were given the green light to play t-ball.  To many this is just another day but to us both are major milestones.  Nearly three years ago when we heard those words 'your child has cancer' we were unsure were our life would be three years from them.  Here we are and we catch ourselves getting caught up in the MOMENT and mommy was caught shedding some tears during those proud moments!

Maddison also had some excitement ... she had her three year checkup and the Doctor is very happy with her growth and development.  She weighed in at 35.8 (90%), height 38 1/4 (75%) and blood pressure 88/62.  She too put on a brave face when she was poked with the MMR and Varicella (chicken pokes) shots. 

That Saturday was the annual Westbrook clam steam and while unloading the car Maddison decided to change her outfit inside the open van.  She lost her balance and took a head first fall onto the driveway.  The clam steam carried on but Maddie spent most of the afternoon on the couch for what we thought was a fever but approximately six hours later she started vomiting.  After speaking with her doctor we opted to play it safe and took her to the ER where she was treated as triage and long story short we opted for no cat scan and compromised by overnight monitoring.  So as Maddie put it we had a sleep over at Colin's Doctor.  After being woken up every two hours, answering two questions, vitals and pupil check we were discharged the next morning. 

Thank goodness we had the holiday to sleep the day away because the next morning Colin started kindergarten and two days later Miss Maddie started pre-school.  We're happy to say both have adjusted to their new schedules and we couldn't be prouder of the two of them.  Colin walks into school hand in hand with his girlfriend and Maddie is a sight of her own with her back pack larger than her and a smile from ear to ear!  If you've been following us you know Colin did not speak last year in his pre-school class ... that has changed, he has been speaking since day one!!  Now we're working on his coaches.

Here are some of our favorite photos from the past couple of weeks:

 

Counts are Good and Make a Wish

Today Colin had his routine checkup and his counts are good coming in at 1600.  His meds will remain the same but if he is still over the 1500 threshold at the next visit we will increase one of his oral chemo drugs. 

We continue giving Colin is anti pneumonia medicine (aka ewww medicine) three days a week and the trick is using a Popsicle as a chaser.  Here is a conversation we had last Friday:

"Colin we have to take medicine this morning"
"okay mommy, the ewww kind?"
"yes sweetie"
"red Popsicle please"
"you got it"

This week we were honored to have a visit from our Wish Granters from Make a Wish.  They came with gifts in hand and since the two new Granters haven't met Colin or our family before they asked him what his wish was and it went like this:

Make A Wish "Colin, what is your wish?"
Colin "healthy blood"
Make A Wish ...pause, "let's rephrase that, who would you like to go see"
Colin "MICKEY MOUSE!!!!!"

Wow, is really only 5 (well almost 5)??

Med Update, Maddie's Birthday & Summer Fun

It's been a while ...
A month ago we found out Colin's  G6PD (glucose 6 Phosphade Dehydragenase) was very high coming in at 6 and it should be around 2.  The Doctor's believe this was a result in the increase of  Dapsone (anti pneumonia) so we was taken off it immediately.  That Friday 7/20 he started Bactrum which is another anti pneumonia med that he will take on Friday, Saturday and Sunday's twice a day.  We used our typical approach which is crushing the pill and diluting but because of the awful taste we struggled for an hour and a half the first weekend.  Since then we've had much luck taking the medicine with a Popsicle to mask the taste.  It doesn't matter that we missed a dentist appointment, camp, karate or that we have a Popsicle at 8am all that matters is that he took the medicine.

This past week Colin had his routine blood check and his counts are good (ANC 1800) and hemoglobin remains good.  Due to a growth spurt Colin's steroid was increased from 1.75mg to 2.25 mg. and boy are we feeling it.  In just one day the menu consisted of: pancake, banana, 2 bowls of animal crackers, 1 sleeve of graham crackers, 4 chicken nuggets, peanut butter and jelly sandwich, gold fish, endless cheese sticks and american cheese, one jug of apple juice, half a jug of orange juice, spegettios (with hidden veggies), another peanut butter and jelly sandwich ... should I go on?  This increase in the steroid is no joke and is a full time job tending to the demands.

Due to a series of events we've encountered over the past couple of months we'd like to remind our cancer family friends that you are the best advocate for your child and always remember to take notes on all the medicines, increases/decreases and so on, reiterate meds and doses at all visits but most importantly listen to your gut. 

In the middle of all this we celebrated Maddie's 3rd birthday by going out to dinner and having family over for a little party.  She was so excited and dramatic about every aspect .. it was so cute and so different from Colin's reactions.  Maddie had to try on all her new clothes immediately after opening.  She wore her tutu out to dinner and wanted to dance when she heard the bathroom music (reminding us of Nanny).  She insisted that everyone sing to her in the restaurant.  She is no longer a baby ... she gave up her one bottle per day (bedtime) by finding a special place for it at the camp ground.  She now has a big girl bed and is very proud of it!  She will always be our baby and has had to grow up so fast but we couldn't be prouder.

We are enjoying the summer and will continue too!!  Here are some overdue pictures: