Monday, May 31, 2010

Two ER Visits - Ear Infection

Last week was the start of Colin's new clinic schedule, he promptly arrived with Daddy on Wednesday morning for a CBC. The visit included an exam by the nurse practitioner and the doctor as well as a review of Colin's counts, (ANC 2100). This is good news as it indicates that Colin has been tolerating the medication well.

On the way out Colin ran into Dylan (one of his ALL buds) and the two of them quickly got into play mode. They ran up and down the clinic hall and got everyone's attention with their belly laughs. The staff began to ask if that was really Colin. You see Colin typically puts his game face on when we have 'the chat' in the morning and it isn't until we are safe at home when he'll take his guard down. It was great to see the two of them feeling good and running around.

Things quickly turned and both Colin and Maddie caught an upper respiratory infection. It began last weekend when Maddie developed a low grade fever that slowly turned into a nasty cold. Colin started to show signs on Wednesday and now has it full fledged. Between cries and irritable moments we're whipping noses, washing hands and taking temperatures a lot.

Yesterday, Colin developed a fever of 102 which meant a visit to the ER. Upon arrival we discovered he has an ear infection. The staff quickly took a CBC and culture and began hydration. Once Colin's counts arrived he received an antibiotic for the infection and to Mommy and Daddy's surprise Colin's ANC was 7100. This was a bit unsettling since the goal of maintenance is to stabilize his counts between 750-1500. After another phone call this morning with the on call Dr we were reassured that an increase in his white cell count is normal to combat the infection.

Today Colin has spent most of the time in our bed and on the couch while snuggling with Mommy or Daddy. Every so often he yells out in pain. It breaks our heart seeing our little guy in so much pain over an ear infection after everything else he's been through. He's such a trooper and is our little hero.

As I write this Colin and Daddy are making their way down to the ER for the second dose of the antibiotic and we will repeat this again tomorrow for the final dose.

exhausted, worried and helpless

Thursday, May 20, 2010

First Week of Maintenance

Colin officially completed the first week of maintenance! The first five days included a high dose of steroid so we got limited sleep and Colin had some new food cravings which included bread and butter, cold plain macaroni, lemonade, eggs and devil dogs.

One morning before work, Colin decided he would get up with Daddy at 5:00 and by 6:05 he was saying "mommy eat dog, mommy eat dog" so I said "you want a hot dog" and he kept walking over to the pantry. Finally I asked him to show me what he wanted and don't you know it was a devil dog. So, we sat and ate devil dogs for breakfast .. yes for breakfast and it was YUMMY!

By 6:20 Colin was in the bathroom yelling "mommy potty away" and soon after he flushed the toilet. As I ran in there, he ran out butt naked giggling. My heart sank as I thought he flushed the diaper down the toilet... I could see a flood soon to follow. But no, he put the diaper in the trash where Mommy puts the dirty diapers before bath time.

This is just two of the many funny things that happened this week. But on a serious note .. Colin has started to get some peach fuzz so GiGi keeps rubbing it so it will come in quicker. We've also spent a lot of time outside enjoying the spring weather.

Thank you everyone for your thoughts and prayers this past week.

Thursday, May 13, 2010


Colin officially started maintenance today!

Maintenance is the final treatment phase and while it's considered the least intense it's the longest, lasting two and a half years. The therapy consists of repeating 3 month cycles. This phase of treatment is necessary to destroy any remaining leukemic cells that are not detectable by standard tests.

Colin will have blood counts checked every two weeks, chemotherapy by infusion 1X per month, a spinal tap with chemotherapy delivered into his spinal fluid 1X every three months. In addition, mommy and daddy will be giving Colin monthly cycles of steroids along with daily chemotherapy pills (crushed and diluted in Juicy Juice). We had to invest in a pill organizer to keep it all straight.

Today, Colin started maintenance by receiving his chemo by infusion, then headed into the procedure room for the spinal tap. With the help of some good pain meds, Colin talked most of the way through the procedure and was up and running and playing soon after.

We would not have been able to make it this far without our support system and all the love that surrounds us. Thank you to each and every one of you.

Thursday, May 6, 2010


Today we made our way down to Yale in hopes of Colin being ready to begin "Maintenance". The start of this final phase is count dependent (ANC of 750+ and platelet count at or above 75). We arrived at clinic at 8:30 and a blood draw was taken to determine if he was ready. While we waited for the results Colin was entertained by Connie the Social Worker, Carolyn the Nurse Practitioner, Dylan and his Mommy and of course a pile of books.

Unfortunately, the blood test results indicated that his ANC went down from 600 last week to 300. The results took both Mommy and Daddy by surprise because Colin's energy level had been very high and his appetite has returned to normal .. well as normal as it gets for a two year old! The good news is that his platelet count is now back to normal limits as well as his hemoglobin count. So we'll hunker down and try to remain germ free giving Colin's ANC the opportunity to rebound.

On the Maddie front:

This past week Maddison had her 9 month check and she's steadily keeping up with Colin. She didn't receive any vaccines, has been given the green light to eat table food, will be getting two more teeth any day now and will start to pulling herself up shortly...lookout!

Weight: 21 lbs 8 oz (85%)
Height: 28" (65%)
Head Circumference: 45.5 cm (90%)

Colin's numbers at 9 months:
Weight: 20 lbs 13 oz (55%)
Height: 27.5" (25%)
Head Circumference: 46.4 cm (75%)

Did we mention they are now both in the same diaper size?

Good night everyone and thank you for all the well wishes, prayers and support.