Lumbar Puncture

Colin had his 'make up' lumbar puncture and methotrexate last week. The day started with our typical routine of telling Colin he cannot eat or drink until the Doctor says he can which doesn't go over very well. Once at Yale Colin was entertained by the clowns, child life and of course his books and Ipad so we only heard "when can I eat" every 5 minutes instead of every minute.

He once again has proven how strong and brave he is. This was the first time he was calm throughout the procedure and even closed his eyes for a couple of minutes thanks to the sedation. Within an hour he was up, playing and running around the garden.

He also started his monthly cycle of steroids with the food of choice appearing to be peanut butter and jelly sandwiches. Luckily, we buy peanut butter in bulk so we should have enough to get us through the next few days! He is also drinking crazy amounts of fluids ... something like 3 quarts in one day.

Maddison continues to go with flow. We've heard her call random people Doctor and asks every night if she gets medicine too. We've also found Colin and Maddie playing Doctor, Colin is the Dr and Maddie is the patient ... they are best friends in between sibling rivalry. We're starting to see how cancer impacts siblings also.

Papa retired this month so everyone is looking forward to relaxing with him and any adventures that may come our way!

We were honored to accepted an interview with the Record Journal. We hope our story will help gain awareness around childhood cancer and inform the community of all the great ways Colin's Crew is helping families in the same situation as us. The article is slated to run tomorrow Monday April 16th on page one and will be posted on-line at: http://www.myrecordjournal.com/

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:
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.

Perspective:
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!!

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.

Swollen face, faver and RSV

The last five days have been a whirlwind. On Friday Colin woke up with a swollen face, his whole left side including eye was swollen. We made our way down to Yale and the Doctor's and Nurse's were stumped. They thought it may have been a reaction to a change in manufactures for one of his oral chemo pills so they advised us to give him the dose in the afternoon to see if he reacts to it again. We did and nothing.

Over the weekend Maddie came down with a fever that continued through Tuesday. Monday afternoon she was scheduled to go see the Doctor and in the mean time we received a call from Colin's school nurse saying he felt warm but did not have a fever. Soon after Colin came home he got the dreaded 100.4 fever so off to Yale he and Daddy went. Colin's counts were good (ANC 3100) so he received a dose of antibiotics and came home. While they were at Yale, Maddie and Mommy headed to the Doctor. Upon departing the house Maddie had a coughing attack and was gasping for air. Mommy reached for the phone to call 911 but Maddie pulled through and settled down. Once at the Doctor she received a breathing treatment since her oxygen level was low. The treatment helped her and therefore she is now on two in-halers for 10 days. We decided to see what the next 24 hours would bring since she didn't have an ear infection. That evening the kids were in bed and asleep by 7:00 and Mommy and Daddy were right behind them.

The next morning (Tuesday) Maddie woke with a fever of 103 so Mommy got on the horn with the Doctor and she was put on antibiotics. That afternoon Colin went to Yale for this second dose of antibiotics where we found out he tested positive for RSV (upper respiratory infection).

Somewhere in the middle of all of this Mommy and Daddy were able to enjoy a night off on Saturday and spent some time with other cancer parents. The night was full of laughs and is just what the Dr ordered! Maddie is also conquering the potty and is doing great!!

Both are doing much better today and even enjoyed a few minutes of the fresh 60 degree weather.

Hugs until next time!

Counts are in range!!!

Colin received his monthly IV chemo last week and completed another steroid stint. After a month of high counts we're happy to say Colin is in range again (ANC 1500). His meds remain the same and we'll go back next week for a blood check. Pancakes were the food of choice this month, consuming nearly 30 mini cakes in one day. Our sticker chart continues to help with the over night wakings on steroid and off... thank you Michelle for getting us back on track.

Over the past couple of months we received news of friends from Yale with children who have the same diagnosis as Colin. Both touched home and continue to. It reminds us that what we're living is real and cherish every moment. You see, a little girl that is Colin's age, same diagnosis and was scheduled to be done with treatment around the same time has relapsed. This news hit us very hard because we not only have become friendly with this family but the fact of the matter is this could have been any of the children fighting this disease and yes it could have been Colin. Another boy, a little older who is fighting this disease for the second time had a scare when they found leukemia blasts in his blood. Further tests ruled out another relapse. Thank god.

This cancer community is like no other ... one mother called it sisterhood recently and we couldn't agree more. We all became family instantly and when you hear news like this it puts everything into perspective again. Yes we're in it to win it but the reality is the fight will never be over. We're just so thankful to have the support around us and the bond with all the cancer family's.

On a lighter note, Maddison has decided it's time to potty train. She's been hinting for a while now but when she starting taking off her diaper when full it was a sure sign to begin. She's catching on pretty quick and is so proud when she gets to the potty in time.

Hugs until next time!