Saturday, March 24, 2012

No Spinal Tap

Last week Colin was scheduled for his quarterly spinal tap however however his oxygen level was a little low, most likely due to him fighting off a cold. He did receive his IV chemo and finished five days of steroids. His counts are good coming in at 1700. We'll go back next week for a quick blood check and then again in two weeks when he will make up the spinal tap.

Over the past month three families that we've gotten close with heard those dreaded words "the cancer is back". While each of their stories and situations are different it has hit home. One is preparing for a bone marrow transplant (ALL), one is preparing for a new radiation treatment (brain cancer) while the other is enjoying a Make a Wish trip in Disney (AML). We think of each of these families often and send them strength, love and hope each and every day. Please join us in doing the same.
Each of these children have given us the strength and courage to speak about our journey and to help spread the word about childhood cancer. We were honored to attend and say a few words at the Kacey Rose Foundation Wine event this month. Since this is the second year we spoke we decided to focus on facts and ALL. A couple of people have asked that we share it so we've included it below:

The diagnosis:
Today, tomorrow and everyday 46 parents will hear those dreaded words
“your child has cancer”. On October 2, 2009 we heard those exact words and our life forever changed. Our son, Colin was diagnosed with Acute Lymphoblastic Leukemia, or ALL just days after his second birthday. Childhood leukemia is the most common form of childhood cancer and has multiple types with the most prevalent being ALL. We quickly learned ALL has one of the longest treatment protocols and is primarily treated through chemotherapy. Boys endure three years of chemotherapy while girls endure two.

Before that crisp fall day in 2009, we were aware of cancer, and like many people, had endured seeing a relative or friend battling a cancer diagnosis. However, we had no perspective on childhood cancer.

At that time, we were wide eyed and naive to the road ahead for our son and our family. The decisions to make are immediate and can include…… What treatment program is best? Do we need to move to be closer to a hospital / treatment center? Who will leave their job? Can you survive on one income? We were so grateful to be introduced to the Kacey Rose organization and the help and assistance they provided to our family during this tremendously stressful time.

Treatment for ALL consists of three parts: induction, consolidation and maintenance. Without going into too much detail … the goal of the first 30 days of treatment is to get rid of as many
ALL cells as possible and to reach remission. Consolidation consists of 4 to 6 months of additional chemotherapy. The final phase, maintenance is typically 2 or three years. Colin is second year of maintenance. He is seen bi-weekly for either blood checks, chemotherapy or spinal taps. We are very fortunate because Colin willingly takes his daily oral chemotherapy which consists of 2 oral chemotherapy drugs, steroids and pneumonia prevention.

The cure rate for ALL, which is approx 80%, is considered one of the success stories of childhood cancer treatment. A child is considered “cured” if they remain in remission 5 yrs after diagnosis. Children continue to be monitored long after treatment to identify and treat many of the possible side effects, both physical and emotional, from the toll treatment can take on there
little bodies.

As I looked around the clinic yesterday, I realized we are no longer the innocent and naive family we were just 2 short years ago. We do not see childhood cancer the same. We have become stronger, thanks to our son. We have become better parents, thanks to our son. And most importantly, we enjoy, and treasure life more thanks to lessons learned from our brave four year old little boy.

We now see families entering clinic for the first time, and recognize the wide eyed stare and the initial stress they are feeling. We now do, as others have done for us, and welcome these families into our “cancer family” and offer support, hope and guidance as they join us in this unique and less traveled path as a childhood cancer family.

Before ending, I’d like to share something that I came across on Facebook.
While the other is unknown the perspective is right on:
Children ride tricycles in the hallway not in the part
Nurses and doctors are their new family.
Their laughter can make a heart melt!
Their strength will make a grown person cry!
Their strength and courage helps you cope.
If you've ever seen a child fight cancer, it will change your life forever!!

Tuesday, March 6, 2012

Over a Month!

Wow, it's been over a month since we updated the blog ...

Colin has been doing well and has had a couple of routine Yale visits over the last month. Mid February Colin received his monthly chemo with Daddy by his side. Colin's counts were still on the high side so one of his oral chemo drugs was increased (methotrexide to 100% or 4 pills). Around the time of this visit we learned there was shortage for the injection form of this drug which is the one Colin receives once every 3 months through his spine. It is also a key drug in treatment and the one that has most effectively improved the cure rates for childhood leukemia. After a few restless nights and some good cries wondering what on earth we would do, we were relieved to learn the shortage was averted based in part on the mass media attention the potential shortage created.

At Colin's appointment last week his counts were still a little high (ANC 2000) so another oral drug, 6mp, was increased to 100% (full pill 6 days & half pill one day per week). This drug change should bring him back into the goal range of 500-1500. Our next visit will be a spinal tap and the start of the steroids. The last steroid week food craving was pancakes, wonder what it will be this month?

We found time for some family fun last Friday night and enjoyed the Monster Jam. We were a little sceptical about taking the kids but they had a great time and thanks to a wise women's advise the kids were equipped with ear muffs ... thank you Brenda!

The Colin's Crew Polar Dip was a huge success ... 95 plungers and $17,500 raised which is enough money to send 8 families to Camp Sunshine in Casco Maine! Thank you to everyone who helped plan the event, the plungers and all the supporters.