On Friday October 2, 2009, just days after his second birthday, Colin was diagnosed with childhood leukemia (Acute Lymphoblastic Leukemia, "ALL"). Colin's leukemia subtype is called precursor or early pre-B. This site is designed to keep family and friends informed of Colin's progress so please come back often.
Five years ago today, October 2nd, 2009, we heard the news no parent expects to hear. This date will always come with both a mixed sense of sadness and joy. Today, five years later, we look back and see how much we have come since that day. Colin is now 7, a happy 2nd grader. Maddison is 5 and is enjoying Kindergarten. Our days remain busy, but instead of scheduled around doctor's visits, they are now scheduled around Little League, Cub Scouts, Karate and Gymnastics.
We understand how truly fortunate we are. Colin will continue to be followed by the medical team, but is now entering the HEROES program at Yale. We can remember the days of Colin's diagnosis, sitting down with the medical team and plotting out a road map for treatment. The road map ended with a hopeful entry into the HEROES program and hearing the words your child is cured. We anxiously await the coming weeks where we can truly hear these words.
October 2nd will always be a special day for us. It is a day to remember what is truly important in life. A day to remember how quickly perspectives, hopes and dreams can change. A day to grieve over what our son had to endure and a day to be thankful for how far he has come. Thank you to all who have supported us throughout this journey. We couldn't have done it without you... Love Mike, Heather, Colin and Maddie.
Colin has experienced some normal kid illnesses over the past month with a double ear infection and today, strep throat. This morning we had to wake him for school which is unusual and he didn't move, in fact he didn't move until noon when we forced him out of bed to use the bathroom and drink a little. After a phone call with the Oncology team and the Pediatrician we scheduled a visit in the early afternoon with the pediatrician. Beyond being very pale, he was tired, fever, nausea and later, mouth pain, so a strep test was performed and confirmed our little guy has strep. He immediately began antibiotics.
The Pediatrician looked me in the eyes right after she told me the strep test was positive and said if it came back negative she was going to do blood work. This is our new normal. We are thankful with a diagnosis of strep. What parent says that? We have accepted that this is our new normal and remain focused and positive but days like today allows the fearfulness a chance to sneak in. Later this week if Colin is feeling better he will have his regularly schedule Oncology appointment and we pray for good results!
We had every intention of posting the below update that was written Thanksgiving week:
Since our last post we've had several blood checks with results right where they should be. We've developed a plan to catch up on all the immunizations he missed throughout the years and will begin to see a dermatologist for his hands where he has warts and an infection they think.
Over the summer we delivered ice cream to the Guilford office for Colin's Crew and Colin asked if he could see his Doctor there so we obliged even though it is not the routine or the Nurses we've grown to love and trust over the past four years. Since then we've had a couple of appointments there and even though the commute is a solid 45 minutes one way Colin has made it clear he won't have it any other way right now. "Mommy it doesn't hurt as much and its so quick". You see they do a finger prick instead of the arm and since it's a small office we are done in the same amount of time it takes us to walk from the garage to the clinic in New Haven. While we miss our regular routine and our nurses it's nice to see Colin at ease and have full out conversations with the staff.
In September Colin started first grade and celebrated his 6th birthday medication free. The celebration started the weekend before his birthday with a family party and the Big Boys and continued through Oct 2nd with a trip to the Toy Store for Lego City with gift cards he collected from friends and family for his birthday, dinners out, a trip to Hershey Park for the weekend with great friends and so much more.
October 2nd will always be a hard day for our family as we heard those words 'your child has cancer' four years ago so we embraced the celebration of life and while no one was around late that night we shed a few tears as we reminisced about how scared we were four years ago and the fear of the unknown. I recall picking Maddie up one day and spotted Colin playing at recess with his friends, I paused for a long moment and embraced every second because there was a time four years ago we were not certain where we would be at this point.
The transition to off treatment was tough but we are starting to get the hang of our new normal life. This Thanksgiving we have so much to be thankful for and it would be unfair to list them all but most importantly we are thankful for each other, our family and all of you who have been by our side through this journey. We could not have done it without you.
We've been enjoying the summer so much that time has gotten away from us! Today Colin had his check up and we're happy to report his blood counts are exactly where they would like them. His ANC is 2100!! The Doctor mentioned that his immune system should be pretty much back to normal and he can resume immunizations.
A few weeks ago we experienced our first cold since being off treatment with a slight fever, congestion and exhaustion. We nearly had to pinch ourselves when the fever came on .. we looked at each other and said we don't have to call and head down to the ER, right? The fever didn't last long however the lack of color (pale) and exhaustion lasted about a week which began on Maddie's birthday. We'd be lying if we told you it was nothing because the reality is that the emotional aspect of it is tough. The thoughts that take over are a bit overwhelming but we remind ourselves that he is doing great and we were at ease when another one of us got sick.
Rewind: On July 11, 2013 we were told Colin was done with his last med (bactrium) and has been medicine free since! This was a huge milestone. We feel like we are missing something at night or when we pack for the day. Our next Major Milestone is January of 2014 when his percentage of relapse reduces. In the mean time we continue to enjoy each other.
Call it creature of habit, superstitious or whatever you wish!
Superstitious, for three and a half years we were in survival mode and kept with the same routine. We didn't dare deviate from it ... medicines were given the same way and same time everyday, we took the same route to and from Yale, parked in the same area, put the name badge on Teddy's neck instead of Colin's wrist, wore the same sweatshirt on LP/bone marrow days and did a lap in the healing garden after our vist. Call us creatures of habit, superstitious or whatever you dare but the fact of the matter is we are very proud we did not miss one medicine dose or treatment in three and a half years unless it was due to low counts. Our motto through this was......... don't deviate from the routine ...it's working!
On December 19th, Colin received is last IV treatment
January 2, 2013 Colin took his last Wednesday chemo drug (aka ewww medicine)
Over 1,600 pills later on 1/7 Colin received his last pill chemo
3 years 3 months, 23 spinal taps, over 1,600 pills and 67 IV chemotherapy his LP confirmed no Leukemia cells!
On 3/15/2013 we closed this chapter of our journey when Colin's port was removed.
Now what? We're taking post traumatic stress head on as we begin to figure out what life is supposed to be or as the cancer world calls it our 'new normal'. As a family, we're rediscovering each other, regaining a healthy lifestyle and making memories a priority. For the past three and a half years, we survived the only way we knew how and were forced to put all major decisions, home projects, friendships and our own health on hold. We're slowly figuring out our new life but in the mean time we're happy to be able to put vacations and plans on our calendar without the looming question, depending on blood counts. Colin looks forward to playing baseball, spending time with the UNH baseball team, learning to swim, camping, attending birthday parties and so much more. Maddie is excited about gymnastics, swimming, doing karate with Colin, being a princess and much more! Mike and I are looking forward to breathing a little and enjoying our family!
Colin will continue his visits to Yale and will be monitored with routine checkups and blood draws over the course of the next several years. Our next milestone is January of 2014 when Colin will be one year off treatment. At this point his percentage of relapse decreases. From there the clock starts ticking for one more year until we reach January of 2015 when he is considered CURED. So, we will continue to worry, as we will for the rest of our lives, about the slightest bruise, fever, rash, ect but for now we are happy with perfect blood counts this week!
We can't begin to thank all of the people who have touched our lives. The new perspective on life that Colins's journey has provided to our family is simply to much to put in words. Thank you for all who have followed our blog and we will continue to post as we move to our new "normal".
Yes, we've been slacking on posting and are well over due! We'll do a rewind post shortly but wanted to give everyone an update on the past couple of weeks.
Thursday evening before the blizzard Colin came down with a slight fever, he was hovering 100 for 24 hours and slept most of Friday. Since he had a runny nose and a cough we were confident the fever was a cause of the cold, however we couldn't help but worry. Since he still has his port we have to follow the fever rules. After talking to the Oncology team early Friday morning they advised we monitor him and call if the fever reaches 101. A few decimal points was huge for us since we typically have to bring him to the ER at 100.4. The jeep was ready for a blizzard trek down to Yale but luckily we dodged the trek through three feet of snow!
The next morning Colin woke up without a fever and feeling much better. He didn't skip a beat and was ready to play in the deep snow. So at small increments he dug, built a tunnel and climbed. Maddie on the other hand would much rather stay inside in the warm house with Mommy! Soon after, Maddie came down with the fever but hers was much higher, pushing 103. She spent most of the blizzard aftermath on the couch and a few days later developed an ear infection.
Two weeks ago we had a pre-op meeting with Colin's new surgeon and discussed Colin's port removal. We should hear shortly when the surgery is scheduled. Counts are good, ANC 1400. This was Colin's first arm poke in two years, he typically opts for his blood drawn from his port but in preparation for the port removal we're practicing with the arm.
Thank you everyone for your continued support and all of those that came out and took the plunge with us! It was an awesome day and Colin's Crew is so excited to send nine families to camp this year!
Hope you can join us tomorrow December 9th for the 2nd Cookies & Hope Bake Sale Event. The Grandmother's of Colin's Crew have been very busy planning and along with 30 other bakers you are bound to find your favorite sweet. All funds raised will benefit Colin's Crew programs such as in-patient meals for 2013.
Long day but good day. Colin did great through the port replacement surgery, lumbar puncture and the chemo infusion later in the day. Counts are on the high side but no change in meds at this point. We were surprised when he asked if I remembered our promise to stop at Toys-R-Us when were getting ready to go home. Needless to say, we are continuously amazed at a child's resilience and we were happy to make a quick pit stop at Toys-R-Us on the way home.
Maddie spent the day with Papa as she has a cold and fever last night so no school today! Of course, by the time we got home, she was back to her normal happy self, a cough but fever free. Thanks Papa!
Take out tonight, chinese was the winner. Papa stayed and worked on the lego's that Colin picked out at Toy-R-Us. A good ending to a long day. We are now all tucked in safe and sound.
Two weeks ago Colin had his scheduled blood check and his port was very sleepy, we could not get a blood return. The nurses tried TPA (which is a medicine to remove any clots) and unfortunately it still did not want to cooperate. Colin was a trooper because the increase in heparin caused a metallic taste in his mouth. We learned quickly that constant drinking helps so while Mommy held the cup to Colin's mouth, the child life therapist, with the assistance of Maddie, had the next one waiting. After a few more attempts, a few tears and nearly trying every position but standing on our head we still had no luck. We were then instructed to come back the next morning so they could do a few tests. It was at this point it became apparent that we were going to end this chapter with a bang because just prior the nurse gave us Colin's end of treatment date which includes three more IV treatments.
So, bright and early the next morning the trek down to Yale began. Colin and Daddy were there by 8:30 and were ready for a long day. The first attempt for a blood test did not work so a dye test and x-ray was performed which came back clear. Decided against surgery at that point and another attempt using TPA and after a few more attempts the nurse was able to squeeze out just enough for a blood test. We were hoping the TPA would continue to work but...
Fast forward two weeks to today ...
The port continued to not cooperate with no blood return even after a dose of TPA. After many attempts, it was decided Colin will have surgery next week to replace his line. The line must be replaced in order for him to receive his IV treatment. It's possible he's grown out of his line and we are very fortunate we got this far with his original port. Because he was not able to have his spinal tap today he will receive that next week immediately following his port surgery. His doctor will perform the spinal tap in the OR while he is under anesthesia.
In addition, Colin's counts remain on the high side so we will increase his medicine (methorexide) to 6.5 pills once a week. Daily dose of chemo (6mp) will remain the same. We hold off on his steroids until next week.
While this is a minor setback, we are reminded we have so much to be thankful for so we wanted to take a moment to say thank you for supporting us through this journey ... we could not have done it without each and every one of you. We wish you and your family's a Happy Thanksgiving!
This past week has been magical to say the least! It started on Wednesday evening when our wish granters organized our send off party at the Texas Roadhouse. Here they told us the details of our trip and gave the kids a few things to take on the trip. Friday evening the kids made signs and posted them all over the house for Daddy's arrival.
Sunday morning at 3:45 a limo pulled up and the four of us hopped in bright eyed and bushy tailed to catch a 6:05 flight to Orlando. At the airport we were greeted by our Southwest friends who decorated the terminal and sent us off in style with earmuffs, Halloween pails piled high with goodies and rock star sunglasses. The kids chatted and played the entire flight instead of closing their eyes ... they were so excited!
Upon arrival a Give Kids the World volunteer was waiting for us and helped with our bags, rental car and directions. This little detail was a life saver with two excited children!
We were at Give Kids the World by 11:00 and while we won't share all the details with you today because we have close friends doing this same trip next week and want to keep some surprises for them .. we will share a few:
Five parks in five days (Magic Kingdom, Hollywood Studios, Animal Kingdom, Lego Land and Sea World)
When we weren't at the parks we were enjoying all the activities and luxuries of Give Kids the World such as mini golf, unlimited ice cream, splash pad, youth spa, candy land playground and so much more
We met Mickey, Minnie, Goofy, Pluto, Donald Duck, Chip & Dale, Balo, Phineas & Ferb, and many others. But we can't forget Maddie's favorite ... Tinker Bell
While at the parks we were treated like royalty with our Give Kids the World badge that granted us access to all rides, attractions and characters without lines. As soon as a cast member spotted the badge we were escorted to the front of the line or in some cases brought in the back door for private sessions with characters. We were also touched by the cooperation of other families who never gave us a look or lip.
We are honored to have taken this once in a life time trip and made so many lasting memories thanks to Make a Wish, Give Kids the World, Pat Harriman (wish granter) and Kevin Emery (wish granter)!!
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!
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)
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:
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!!!!!"
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:
Quick update because we are all exhausted from our first weekend camping trip as a family!
Last week Colin went in for his monthly IV chemo and we're happy to report his counts went up to 1800 (ANC) and his hemoglobin rebounded to 9.9. The Doctor would like to test his G6PD (glucose 6 Phosphade Dehydragenase) at our next visit. This will help determine if we should change one of his drugs (Dapson).
We were not only excited to hear his counts rebounded but we were also given the green light to head up north for the weekend. We met Auntie Courtney and Uncle Mike for our first family camping trip with the kids at our favorite Vermont state park, Gifford Woods. With no expectations in mind the kids far exceeded everything we had hoped. Colin's favorite part was rock climbing (well really rock walking) in a stream while Maddie's was cooling off in the frigid stream water with Daddy waist high. Daddy's favorite part was Long Trail Brewery and Mommy enjoyed the campfire meals. As a family we shared a special moment at a wishing. We asked Colin to make his wish. He paused and said "it's the same one from Camp Sunshine ... healthy blood". Sniff sniff .. a four year old should be wishing for a new bike! Please continue to help us spread awareness around childhood cancer and Colin's Crew.
We hope to upload a few pictures later in the week but for now we need to catch up on some sleep!
Today I went to the clinic with Colin and Aunt Heather for his blood check. I was able to come along at Colin’s request! Colin introduced me to all of the nurses and we worked together to complete a difficult puzzle. I had a really good time at the clinic meeting everyone and seeing how friendly everyone is and how good they are with each child. I was also able to see his favorite part, reading along with Charlotte, one of the Child Life Specialists, and reading a story that Charlotte put together about his journey with cancer since diagnosis. Colin’s blood counts may have been on the lower side but he has the green light to have a great day tomorrow at my graduation party! I am looking forward to introducing him to the slip n slide and possibly a couple fireworks later on at night!
Notes from Mommy and Daddy: ANC 900, Hemoglobin 8.8. Ret. 6.7. Hemoglobin still on the low end back next week for month chemo and more blood tests.
Colin learning how to give Gabe the Chemo Duck his medicine:
Today's visit to clinic started off with a bang. Colin and Maddie were confused when it was darker at 8am then it was when they went to bed the night before! Papa was there for the clinic visit today, keeping Colin occupied and meeting the nurses. The good news is that no transfusion was necessary today. Although Colin's counts dipped a bit more; his hemoglobin registered at 8.6, we are hopeful that his body will rebound and will not require a transfusion. Back on Friday for blood check. Thanks for the prayers and positive thoughts.....Keep them coming!
Favor: we entered the kids into a photo contest to win a themed party and photo
shoot, with their birthday's just around the corner we thought they would love
to celebrate in style. We were in the lead for the first few weeks of the
contest but have fallen a bit behind. Can you please take a moment to vote for
us? You can vote once per day until July 1st. It’s VERY simple. Click on the
below link for Laura Dee Photography, “LIKE” their facebook page, click on the
photo contest button, scroll down and vote for the Colin & Maddie's photo (3
clicks, 3 seconds)!! http://www.facebook.com/LauraDeePhotography?v=app_197602066931325
Ups: We spent a week at Camp Sunshine in Maine and had a blast catching up with old friends and making new friends. The kids were very busy with their activities each day and even made a few new friends. They are already asking when we are going back! We continued our vacation through the weekend, heading down to Colin and Maddie's cousins birthday party on Saturday and to the carnival at Lighthouse Point today. Sunday ended with both kids sound asleep by 7:30 which is unheard of!
Downs: The Friday before we left for camp Colin was very pale and his blood draw results indicated that his hemoglobin was down, registering at 8.9. A transfusion is required at 8.0. Although his energy remains good, his color has not improved and we will be heading to clinic in the morning (Monday) for a blood draw to check on his counts. We also learned that someone close to us relapsed earlier this week so we can certainly use some extra prayers and positive thoughts.
Favor: we entered the kids into a photo contest to win a themed party and photo shoot, with their birthday's just around the corner we thought they would love to celebrate in style. We were in the lead for the first few weeks of the contest but have fallen a bit behind. Can you please take a moment to vote for us? You can vote once per day until July 1st. It’s VERY simple. Click on the below link for Laura Dee Photography, “LIKE” their facebook page, click on the photo contest button, scroll down and vote for the Colin & Maddie's photo (3 clicks, 3 seconds)!! http://www.facebook.com/LauraDeePhotography?v=app_197602066931325
We are happy to report Colin is doing well and over the past month his routine blood checks have all been in range. He had chemotherapy and a spinal tap today. His counts today came back a little on the high side with his ANC at 2700. We will keep meds as is for now but may again increase if they remain high at next visit.
This morning we kept to his normal routine which is no food or drinks, weight/height/temp/blood pressure check, access of port to start his IV chemo, exam by the doctor and then emla on his back (this numbs the procedure area). We then wait 20-30 for the numbing so we played at the activity table and today we had the pleasure of making sand art with the Sunshine Kids. Once ready, Colin received part of his sleepy medicine at the activity table and we carried him into the procedure room. Once in there he received more sleepy medicine and pain meds. The Doctor, Nurse, Student Nurse, Child Life Specialist and Mommy and Daddy waited patiently while Colin is calm on the table and begins to fall asleep. He is put in the featile position and held very tight by the nurse while the doctor performs the procedure. Colin clenches our hand and lets out a little cry during the injection and within minutes he is asking for his juice and gold fish. He lays comfortable flat for 30 minutes so he doesn't get a headache and as soon as he finds where Crazy Jill (Colin's new nickname for his favorite nurse) put his shoes, he is off to the activity table and doing racing laps with daddy around the outdoor healing garden. It is truly amazing how quickly these kids can rebound and be off playing as if nothing happened. Tonight before bed Colin was concerned about his band aid, you see at the beginning of the day they use a large band aide on his back for the numbing cream but when done they use a small one. He wanted to know where his large band was and if the doctor took it off while he was sleeping. He also mentioned that today was a bad day because he wasn't able to eat or drink and tomorrow will be a good day.
We tell you this because today when we walked into the clinic we were floored by the amount of new children there. There was not one green chair or activity table chair available. It brings tears knowing the fight these children have ahead of them and all they will endure. With that said, if anyone would like to witness these brave children please let us know and perhaps we can arrange for you to come to one of our visits.
We also apologize for the lack of recent posts. It's taken a long time to post an update because a part of our heart has been stolen by cancer. A family we became close to said good bye to their three year old daughter four weeks ago. No words can express ... just that no child should have to face this disease and no parent should have to say goodbye to their child. We will continue to raise awareness around childhood cancer in memory of sweet Nayelis and all the children fighting.
Last week Colin had his routine blood check and his counts are in range coming in at 1200 (ANC). Three weeks ago one of his Oral chemo drugs (Methotrexate) was increased to 5.5 pills and we learned very quickly when crushing and diluting that you need to do no more than two pills at a time or it comes spitting back out at you. Over the past couple of weeks Colin has made some great strides ... he was spotted a couple of times talking in the classroom or on the play ground. He's starting to interact with a couple of his friends when we drop him off and recently followed Maddie with a couple of the girls to play before school. Colin is usually attached to Mommy's hip and has to be pride away so it doesn't matter that it took almost the whole school year to get to this place ... we are so proud of him! In addition, at our last clinic visit Mommy stepped away for a few minutes to visit with a friend and upon return Mommy was able to admire Colin from afar while he was interacting, giggling and being his fun self with the volunteers, nurses, clowns and magician. Tears of joy as we begin to see him break through!!
Ms. Maddison continues to be her princess self wearing her party shoes and tutu's nearly every day. She has learned how to throw a full out temper tantrum and sweet talk both Mommy and Daddy !! She is completely potty trained and will attend a short town camp this summer with Colin.
Lastly, in our last post we mentioned how honored we were about speaking with The Record Journal. Below are the links to the two articles in case you missed them.
Colin’s Crew helps members of Wallingford boy’s ‘cancer family’ WALLINGFORD — When Mike Westbrook heard that his son, Colin, had leukemia, he didn’t believe it.
“I thought it was wrong; I thought the tests were wrong,” he said.
But Colin, who had recently celebrated his second birthday, was sent to the hospital, where he spent the next 12 days and where his family began a journey that has continued for more than two years.
Colin has acute lymphoblastic leukemia, a treatable cancer of the white blood cells. But when Mike and Heather Westbrook learned of his condition on Oct. 2, 2009, they were prepared for the worst.
“To get that phone call ... you know about leukemia, but you don’t really know,” Heather Westbrook said. “You don’t know what’s in store.”
The news of the diagnosis came at a time of celebration for the Wallingford family: Heather had given birth to a daughter, Maddison, just two months earlier.
“We were on a high from having number two, and then we get this news,” Heather said.
Colin is on a three-year treatment program, and will be considered “cured” if his cancer remains in remission five years after his initial diagnosis. But relapses are possible, and while Colin is healthy and active now, his family is still wary.
“We’re cautiously optimistic,” said Mike Westbrook.
Every two weeks, Colin goes to the hospital and once a month he receives chemotherapy through a spinal tap. When he’s home, he takes steroids and chemotherapy pills.
The family started a blog shortly after Colin’s diagnosis, originally as a place to provide updates for family and friends.
“We were getting so many emails, calls and texts that, with a website, everyone was updated at the same time,” Heather said. “But it actually became a little bit therapeutic.”
Mike said the blog will also serve as a teaching tool for Colin. The family hopes to be able to explain his condition to him when he is older. Colin, 4, and Maddison, 2, are too young to understand the cancer and Colin’s treatments.
“They just call it his boo-boo,” Heather said. “It’s hard to comprehend, but someday they can read all this.”
The blog has grown, and now the Westbrooks see it as a place to offer advice and support for those who are faced with a cancer diagnosis for their child. Heather Westbrook said they have welcomed the new people they meet at the pediatric oncology unit at Yale-New Haven Children’s Hospital into their “cancer family.”
“We want to talk, we want to share our experience,” Mike said. “We want to give them some hope, some education.”
In a recent blog post, Heather talks about how her outlook has changed in the last two years.
“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,” she said. “However, we had no perspective on childhood cancer. ... As I looked around the clinic yesterday, I realized we are no longer the innocent and naive family we were just two 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.”
The family received an outpouring of support following Colin’s diagnosis, and has become close to other families at Yale-New Haven. After they came to grips with Colin’s condition, they wanted to do something to give back. In the spring of 2010, Colin’s Crew was born.
Colin’s Crew started as a fundraising organization, but it now delivers meals donated by local restaurants to the oncology ward at Yale on holidays.
“Some of these families are up there by themselves,” Mike said. “To have a nice dinner for the holidays, it’s helpful.”
On Easter, Colin’s Crew delivered meals and hand-painted eggs to families at the hospital. One mother sent Heather an email thanking her for the gift.
“We received your care package yesterday — amazing, caring, classy — it was wonderful,” she wrote. “I was extremely touched as I was alone with my son on Easter. Thank you for brightening up our day and doing what you do. It was impressive.”
Colin is in preschool at Cook Hill School, and for Valentine’s Day the whole school made valentines. Kate Xeller, a family friend of the Westbrooks, helped deliver the cards to the hospital.
“We got so many thank-you cards back,” she said. “It was a really great feeling. I give a lot of credit to Heather and Mike for their poise to give back like this during what is a scary time for them.”
Colin’s Crew is in the process of registering as a 501(c)(3) nonprofit. It’s an effort Heather wants to see continue.
“We’re excited to see where it goes. We enjoy helping other people,” she said.
When a child has cancer - Barbara Parent A Page One story in the Record-Journal on April 16, "Colin's Crew helps members of 4-year-old's 'cancer family'," begins with Mike and Heather Westbrook, of Wallingford, being told that their son, Colin, who had just turned 2, has leukemia.
"To get that phone call … you know about leukemia, but you don't really know," Colin's mother, Heather, told Record-Journal writer Russell Blair.
"You don't know what's in store."
Entering the realm of cancer is frightening at best. Entering it clutching the hand of a small child should not be part of the scheme of things.
But it is.
Childhood cancer is a 3year-old telling Elmo he'll be back to play as soon as he gets his treatment. Childhood cancer is a first-grader moving into the medical jargon of bone marrow, chemotherapy and radiation, saline flushes and spinal taps.
Childhood cancer is babies with IVs in their tiny feet.
Childhood cancer is a 10year-old soccer player squeezing in his time on the field between treatments.
Childhood cancer is a 14year-old playing competitive basketball wearing a wig.
Childhood cancer is a teenage girl losing a leg to bone cancer.
Childhood cancer is the emotional relief that comes with remission. And, childhood cancer is the lurking fear of a relapse.
One of the most devastating aspects of childhood cancer is the helplessness a parent feels over the disease and that they can no longer keep their child out of harm's way.
Yet childhood cancer can be met head on and fortified with support from nurses and technicians to help ease the walk and doctors to have faith in.
And strength can come from childhood cancer.
Strength that comes from within ourselves by reaching out to others.
In his story, Blair reported on "Colin's Crew," which began as a fundraising organization in early 2010 and which Mike and Heather Westbrook have expanded into providing help and support to other parents they have met at the pediatric oncology unit at Yale-New Haven Children's Hospital, where Colin is on a three-year treatment program. The Westbrooks also write a blog that offers advice and support for parents facing a cancer diagnosis.
"We want to talk, we want to share our experience," Mike said in Blair's story.
"We want to give them some hope, some education."
In a 1988 Record-Journal story on the Children's Cancer Program, located at the time at the John Dempsey Hospital at the University of Connecticut Health Center in Farmington, and now at Connecticut Children's Medical Center in Hartford, social worker Joan Rolsky, was asked if there was a single quality that stood out in the most memorable families she had worked with for the 18 years she was with the program: "I don't know if that's an answerable question," Rolsky said. "I don't know how you define what it is they have.
Courage is such an easy word to use and we don't all deal with things with courage. It is more," she added, "an enormous quality of caring for each other, that marks the families who handle childhood cancer the best. I don't think the victors are the only ones who survive."
Colin’s Crew was originally formed to provide financial and emotional support to the Westbrook family. As Colin continues to do well on treatment, “Colin’s Crew” is planning fundraisers to help families in the same situation as the Westbrook’s. Visit us online at Colins-Crew.org
Hope
"Hope is the belief in a better tomorrow. Hope sustains the will to live and gives the strength to endure each trial. Hope is not a way around, it is a way through. The majority of children conquer childhood leukemia and live long and happy lives. There is a reason for hope." Nancy Keene
