Another Month

On the 7th Colin had his monthly blood check and his counts were just above the range coming in at 1900. Colin's doctor decided to keep his meds as is for another two weeks so we had a great two weeks leading up to Christmas. We saw lots of lights and drove through Hubbard and Light House park park to see the displays. Both kids enjoyed those evenings and were full of ewwws and ahhhhs.

The week after Colin had his four year check up with his pediatrician and we're happy to report he's growing and developing at a good rate. She's extremely pleased with Colin's school placement and the speech therapy he's receiving. Once again all his vaccines were held due to his diagnosis.

The Wednesday before Christmas Colin had a spinal tap where fluid was taken and tested and he received a dose of methotraxide (chemo) through his spine. There is a national shortage for Fentanyl which is the drug they give Colin before the procedure for pain so they used Morphine. Colin cooperated much better then last time so the procedure took 20 minutes from start to finish. The Morphine did however make Colin more groggy afterwards. It took him some time before devouring the food we packed but before long he was up and playing at the activity table. He started the steroid and was on it through Christmas. I must say it wasn't a bad steroid week ... not sure if we should thank the Elf or the anticipation of Santa but whatever it was we are thankful! Colin's blood counts (ANC 5300) are way above range so his chemo was increased to bring his ANC back down to the targeted range - 750-1500 (Note to self: Metho was increased to 3 pills. 6MP was increased to alternating full pill and half pill)

Christmas was amazing this year. The kids are at a fun age and enjoyed every part. Here are a few highlights:

Colin's favorite gifts were a art easel and legos

Maddie's favorite gift was a Barbie Doll

Colin enjoying asking a ton of Santa questions and spreading Reindeer food in the yard for Rudolph.

Maddie has been fighting off a cold and just in the last day has started wheezing and coughing but still doesn't skip a beat. She's busy playing with all the new toys Santa brought and continues to be the princess in this house. Her vocabulary has exploded and her favorite saying is "me too". She does not want to be left out of anything and will let you know it!

Colin's Crew Update:

Nanny, the kids Great Grandmother, made stockings for the Yale Oncology in-patient children. The stockings were hung on the kids IV poles in hopes Santa would find them. In the morning the children woke to full stockings thanks to the Elfs at Yale!

The team delivered our first meal to the in-patient families on Christmas day. The main course was donated by Doody's in North Branford and was accompanied by personal apple pies from Lyman Orchards of Middlefield. We hope to provide another meal in the near future!

All about counts

A month ago Colin received his monthly IV chemo and we were very surprised when his blood results came back with an ANC of 3400 which is well over the 500-1500 range. At that point we began his oral chemo at 50%. This week we were back at Yale for a routine blood check and we're happy to report Colin's counts are coming down nicely ... his ANC is 1900 so he's nearing the range. Our next visit to Yale will be right before Christmas when he'll receive his next LP, chemo and you guessed it, the start of steroid week!

We hope everyone had a wonderful thanksgiving! As we celebrated this year, we reflected on all the things we're thankful for and the list is endless but most of all we're thankful for life and all the little moments we cherish.

Counts are coming up!

Colin had his checkup today and his counts are still on the low side but they are coming up. His ANC is 500 just enough for him to go back to school! As we talked about going to back to school tomorrow he got very excited and we're reminded that it's been close to four weeks since he's been there. He misses his new friends and the routine.

We will continue to hold his meds for another week and re-evaluate at our next visit. Hopefully his counts will be high enough to start back on track with his medication.

We hope to get a few full nights of sleep before the start of steroid next week :)

ANC 200

Today Colin went in for a blood check and his counts have dropped, ANC is 200. The range he should be in is 500-1500. This means we're home-bound until they come up. We'll go back in a week for another blood check. Colin continues to say just one more bad day ... awww, priceless.

Miss Maddie has not skipped a beat through all this. She's our social bug and continues to bounce around without hesitation.

As for Mommy and Daddy ... we're exhausted and could not do this without all of you by our side. Thank you!

Up and down

Last Wednesday Colin's counts increased to 1100 and he began to perk up over the weekend. He is eating better and has enjoyed a few outdoor activities. Today we were back at Yale for an immune boost transfusion (IGG) which should help him fight the fall/winter colds and get him over this hump. The results of the IGG test showed he was low, coming in at 322. A transfusion is recommended below 400. Since this is a blood transfusion we started with a dose of Tylenol followed by IV Benadryl. The transfusion ran over a three hour period of which Colin slept for most of it. We were disappointed to hear his counts have dropped again, ANC 600, however it was somewhat expected since he started his oral chemo at 50% the dose last Wednesday. We'll check back in on Wed for a CBC before deciding on a possible return to school date.

Thank you to all who joined us and Colin's Crew for a fun night at Beer & Hope. The money raised will assist families with childhood cancer.

Low Counts

Back to clinic today.  Colin received his monthly IV chemo and another dose of antibiotics. The rash seems to be going away a little each day. His counts are now low (ANC 347) so we're still home-bound. Due to the low counts he will not receive his oral chemo for at least a week. An IGG test was also taken. If it comes back low he will be given a boost via transfusion to help his body combat the viral infection.  We should know the results in a couple of days. Colin did start the steroid today which should help improve his counts however should he spike a fever while his counts are low he will be admitted.

Four days at Yale this week ... let's hope we can stop the pattern!!

Another ER Visit

Back to the ER tonight due to 101.7 fever. Colin was a trooper and kept busy with his new Ipad while we waited for blood counts and antibiotics. As we hoped Colin's counts came back high enough (ANC 700) to head home instead of the anticipated admission. Back tomorrow for another dose of antibiotics and chemo.

He's comfy in his bed sound asleep but Mommy and Daddy can't help but worry. Will update again tomorrow.

Believe in Tomorrow & Hand Mouth & Foot

Last week we had the opportunity to enjoy a few days at Believe in Tomorrow in Maryland which is an organization that offers families with life threatening illnesses a much needed break from the daily routines of medicine. They have three housing facilities in Maryland and we fortunate to stay at the house by the sea in Ocean City. We enjoyed the off season by playing miniature golf, viewing the wild horses, boardwalk strolls, a tour of the life guard museum and some fantastic meals. Unfortunately, both kids were under the weather and Maddie came down with a low grade fever and a rash followed by mouth sores the second day we were there. Within a day, Colin was starting to give us signs of not feeling well so on Friday morning after a slow start and some convincing to get him out of bed we packed up and headed home.

Maddie rebounded quickly and her rash subsided by Friday evening. By Sunday Colin developed the rash, mouth sores and a fever so we made our way down to the ER early in the evening where they took his blood counts and gave him some antibiotics and fluids. It was a record ER visit, we were home by 11:00. Could it be due to our long time nurse from the 7th floor who took care of Colin? The good news is .. his ANC was 700 so we were able to come home.

Today Colin spent most of the day sleeping and watching movies. We returned to Yale for the second dose of antibiotics and some fluids which seemed to perk him up a little. The rash is still all over his hands, arms, feet and legs but the mouth sores have subsided. The Doctor's believe both kids have hand mouth and foot disease so we're home-bound until Colin's next visit which is Wednesday.

Counts Are Back Up & Two Year Post Diagnosis

Colin went for his routine blood check today and we're very happy to report his counts have recovered. His ANC is now 1100 which is perfect!

In our last post we neglected to recognize Colin's two year post diagnosis date which was Oct 2nd. The weekend was beautiful but the memory and reflections were gloomy. Had you asked us two years ago if we thought we'd be where we are today we would have never imagined. Colin has never once let us down along this journey and we've learned so much about ourselves and about our family. We've learned to function with few or no hours of sleep and truly enjoy the big things in life while trying not to sweat the small stuff. Most importantly we've learned just how precious life really is.

The fact of the matter is we would not be where we are today without the support behind us. And for that, we thank you.... Mike, Heather, Colin and Maddie. xoxoxoox

LP and counts are on the low end

Apologizes for the random post last night ... we started an update through Colin's new Ipad but as you can imagine we're still learning how it works.  He received an Ipad through a program called Ipads for cancer, sponsored through Journey 4 a Cure.  He's only had it for 24 hours and already knows how to navigate through many of the games.  We're very excited for him and love to see his beaming smile whenever he talks about his "toy"! We're also happy that he'll be able to stay connected at school for days that he may miss.   Wow, what would we do without technology and all the great organizations out there.   You've made our 4 year old very happy!  Pictures will follow :)

On the medical side, Colin had a spinal tap last week and unfortunately it was a long day.  Colin typically receives a conscious sedation for the procedure however he did not cooperate this time and resisted with strength and anger.  After two attempts the procedure was called off.  We were presented with two options 1)come back next week and we'll try again or 2)have the procedure in the OR with full sedation.  We opted for the second option.      

Holding your child as they are given sedation and feeling him go limp is a helpless feeling.  We spent most of the day in the OR. The procedure itself was fairly quick, but Colin had some difficulty breathing and required a breathing tube during the procedure and oxygen as he was recovering. We let him sleep and wake up on his own later in the day. He awoke happy but starving! He quickly went through two popsicles then moved on to graham crackers and continued to eat up until close to bedtime! 

His counts were low, coming in at 500. Because of this, as well as the ordeal on Wednesday, Dr Joe asked that he take the rest of the week off from school so we had some lazy days at home.  Thank you for all the love and support! 

Hapy Birthday Colin!

Happy 4th Birthday Colin! You are amazing and a true hero in our eyes. In your four short years you have endured more than most adults...we love you!

Counts R In Range!

This week Colin went for his routine blood check and we're happy to report after many weeks of high counts Colin's counts are in range!! This is great news as we approach fall. The visit was pretty uneventful ... the volunteer swooped Maddie up upon our arrival and entertained her while Colin and Mommy met with the nurses.

Colin started pre-kindergarten and is adjusting quite well. He's hesitant when he goes and as the days pass his anxiety lessens. We know he's having a great time despite the hesitation because it's all he can talk about for hours after. This was a huge step for our family since last year Colin was not allowed to attend preschool. We've met with the teacher, speech therapist and nurse to discuss his situation and while everyone has been very accommodating and have reassured us they will keep a good eye on him we're anticipating lots of colds this fall/winter and are prepared to hunker down.

As we're sure you all know, this month is childhood cancer month, so we've been very busy supporting our cancer community. Volunteered at Kacey's Sunflower event * guests at a wine & beer tasting to benefit the Tommy Fund * ANC dance to benefit Colin's clinic friend Ms Mona * Guests at the Truck Convoy for Make a Wish.

We're still blown away by the love and support of this cancer community. While attending the Wine & Beer event another guest got wind that we were a cancer family and sent us out to dinner after the event. While we quickly tried to reverse the offer the gentleman ran away and said have a great dinner. It just proves that there are still 'nice' people out there.

Today while at the Make a Wish truck convoy Colin was on the search for a fire truck. Come to find out there was an anniversary celebration in Clinton so there weren't as many fire trucks to ride in however at the last moment a cop car opened up and the driver ran right over to us and asked Colin to ride with him. We rode up route 84 watching both children wave to every person on the side of the road. Once again seeing the 100s of people who came out to watch the convoy brought tears to Mommy's eyes.

Somewhere in between all this we loaded the kids into the car and headed to up state NY for the annual Greening reunion where fun was had by all!

What A Month

This week Colin received his monthly IV chemo of vincristine and started the five day stint of steroid. I think we say this every month but it is this one week per month that reminds us how serious 'cancer' is. Within minutes of Colin receiving the chemo he develops dark circles under his eyes. This month we barely made it home before his stomach turned which happens like clock work on these days. If that isn't enough, by mid afternoon the steroid has kicked in and he begins to eat us out of the house with a very whiny but demanding voice.

Two weeks ago Colin's counts were still on the high side (ANC 2,000) but they kept his meds as is. This week his counts haven't budged (ANC 2,100) so they increased one of his oral chemo drugs to 4 pills from 3. So the pill box now looks like this:

IV Vincristine - chemo (once per month)
6MP - oral chemo (one full pill 6x's per week and half a pill 1x per week - Wed)
Methotrexate - oral chemo (4 full pills 1 x per week - Wed)
12ml's Dapsone - pneumonia prevention (daily)
1.75 dex - steroid (2x's per day - 5 days per month)

It's been a whirlwind of a month. We enjoyed our summer to the fullest ... a few highlights are below!

Mike had the honor to become a godfather to our second cousin Ryan. As I watched him hold precious Ryan I saw a spark in his eye that said it all ... he is one proud godfather.

Family camp out in the basement due to Hurricane Irene. We were very fortunate as we did not lose power and had little damage in the neighborhood. We played it safe on Saturday night and made our basement home for the evening. Colin and Maddie were very excited to play in the tent and Colin brought in all the the essentials (flash light, box of books, two blankets, pillow, drink and of course his trust 'Teddy').

Maddie was a little under the weather last week with a 103 fever and no other symptoms. It came on very quick and luckily left pretty quick also. After speaking with the Dr. when the fever spiked we agreed to alternate Tylenol and Motrin (well not Motrin but whatever it's called now) and touch base in the morning. The Dr felt is was viral and we think Colin dodged it. As a cancer parent it's unsettling because we're headed to the ER for 100.4 temp with Colin however with Maddie 103 is no big whoop ... basically it's sit and wait to see what happens. Maddie is back to her chipper self running around here proving she's the princess of the house!

Well today starts childhood cancer month and as we sit hear and reflect on the words 'your child has cancer' ... words a parent never wants to hear ... we're determined to help spread the word. If you haven't already, please "like" the Colin's Crew facebook page as the team will be sharing some powerful information throughout the month.

Happy End of Summer
Happy Back to School

Colin received a package of school supplies from Friends of Karen:
Miss Maddison our princess ... oh so cute
All dressed up!

Proud Godfather!

Colin & Maddie

Colin Update: This week Colin received his monthly IV chemo of vincristine and started the five day steroid cycle. Colin's counts are still high coming in at 3500. If his counts remain high in two weeks, meds will be increased again. Gigi joined us this week and so did Rocky from the Rock Cats. Rocky visited every oncology patient and donated tickets to the children and their families for the August 21 game. Tickets can also be purchased for $8 with a portion of the proceeds going to Colin's Crew benefit Colin's Crew events and children with cancer.

Like clock work later that afternoon Colin got dark circles under his eyes and it's at this point he visually looks sick. Most days he looks like a normal healthy child and you can tell yourself it's just medicine you give him to keep you emotionally stable. Every month at this point it breaks our hearts and puts cancer and this journey into perspective.

Maddie Update: Maddie had her two year check up and we're happy to report she's a happy healthy young girl. Weight 30.2 lbs (90%). Height 34 5/8" (75%). Her hemoglobin was perfect at 12.5. Won't lie.. the days leading up to her appointment were emotional as the pain and thoughts of Colin's diagnosis were front and center. While deep down inside you know everything is fine we're scared by the words 'your child has cancer'.

On a lighter note ...
Rewind: last week Maddison turned two! Our celebration started on her birthday with a visit from Gigi and Papa with pizza and ice cream cake. Followed by some Auntie time while Daddy and Uncle Joe went to the Friday Yankee game. Saturday friends and family gathered to celebrate life, you see we have a ton of summer birthday's so one big party was in store. Finally on Sunday eight cancer families gathered at our house for a summer picnic. While eight of the seventeen children have or had cancer you wouldn't be able to pick them out as they ran around and played all full of energy. They are all true heroes and we enjoy every minute with our 'new family'.


Dr Joe and Rocky:

Colin & Maddie, not so sure about Rocky
Birthday Girl
Proud big brother
A few presents
Our eight heroes
The whole gang all 17 of them

High Counts

Last week, Colin went to clinic and his ANC counts continue to rise. His ANC was at 4,200 and should be between 750-1500 so medications were increased again and we will go back next week for recheck and for meds to adjusted again if needed. (Note to self: 6mp was increased to 1 full pill 5x's per week and half a pill 1x per week - Wed).

On Thursday, we all went to the fundraiser for Camp Rising Sun held at the Owenego Beach Club in Branford. The kids had a blast dancing to music and generally running around. Colin also got to see his Dr. (Dr. Joe) at the event which he was very excited about!

The weekend was fairly low key while we stayed inside as much as possible during the heatwave! Stay cool.

Another LP & Yankee Game

Daddy here ... On Wednesday, Colin had his quarterly lumbar puncture. Colin did very well and didn't even shed a tear during the procedure. Overall, the morning went smoothly and we were ready to go by noon. His ANC remains higher than the range (2500) so we continue with the increased chemo dose and increase again in two weeks if ANC remains high. Colin also started his steroid cycle which seems to be affecting him more. He complains of feeling "ewe" and just isn't himself. Tonight is the last dose so we hope he will be feeling better over the next couple of days.

Colin and Maddie staying at Gigi's and Papa's on Saturday, we drove down for the Yankee game on Saturday...What a game, the stadium was crazy as Jeter hit number 3,ooo! It was a great way to celebrate my 40th birthday. From there we headed to Long Island to one of Heather's college roommates for an 'F Cancer' party as she just beat cancer.

Well Over Due Update

Let's start by saying, no word is good word! We've been enjoying life as you will see by the looong post below!

Medical Update: Yesterday Colin had his routine blood check and his counts remain in range, ANC 1500, so we will increase one of this oral weekly chemo drugs next Wednesday (note to self: methotraxite 3 pills, increased from 2).

Over the past month and a half Colin has been great, his counts have been in range so we've been able to enjoy life to it's fullest. Another note to self: one month ago we increased 6MP to three full pills 3x's per week (Fri, Sat & Sun) and half a pill the remainder. Increased from half a pill 7x's per week.

Camp Sunshine: Camp Sunshine did it again ... relaxed and re-energized while meeting new friends and hanging with old. We all had one thing in common, children with cancer. It didn't matter what kind of cancer or where you are in treatment the fact of the matter is no one truly understands this journey more than another cancer family. Being surrounded by other cancer families for five days gave us a taste of normalcy again. Through the group discussions, challenge course team work, blooper games and karaoke we were over come with the love and support which has given us the renewed strength to keep going strong down this cancer path.

The kids had a blast after they got over the initial anxiety of being left in Tot Lot and Colin is already asking when he can go back and play. The volunteers were wonderful with the kids and we can't wait to take two of them up on their offer ;)

Some memorable moments: Maddie learned how to go down the slide on her own * Colin loved zumba * Karaoke, Like a Virgin & Peaches & Cream sung by dear friends * The challenge course ... "look into my eyes" * Mike's team won the luv cup * Tekki Bar with the CT parents * Small world, met another family from CT and the father works with Mike * Chemo date with Hannah * Our boat launch family wish

We hope to put together a photo video but in the mean time enjoy some of our favorites!

Rewind...Somewhere in the middle of all this we fit in:

A visit to Bushnell Park to kick off the summer with an Organization called the Sunshine Kids. The kids loved the pizza truck, cupcake truck, crafts and lots of bubbles but passed on a carousal ride.

A Saturday morning at Beardsley Zoo. The kids made sure we didn't miss one animal. Colin was particularly interested in the owl and Maddie love the whole experience especially her first ice cream cone!

A date night to celebrate Mike's 40th at Lenny & Joe's. Happy Birthday!!

Locks of Love: On May 22 another cancer mother, mother of one of Colin's chemo buds, held a locks of love event where four of us donated 10 inches. The event brought in over 70 breads and we were honored to be part of it. Sherry, you put on a great event thank you for letting us be a part of it.

Relay For Life, New Fairfield:
A team of 16 walked for 13 hours on June 4th and 5th at the New Fairfield Relay for Life event and we're happy to report the team raised nearly $2,000! While we were hesitant to let Colin walk at the event looking back we couldn't have had it any other way. The evening started with a survivor lap where the four of us walked hand in hand with happy tears while supporters cheered. The second lap was for the care takers and once again the team rallied behind Colin while he made a lasting impression as he rounded the corners on his big wheel! Morgan our cousin coordinated the team and did a fabulous job, thank you Mo!!

Good Stuff

Colin has been doing well over the past 3 weeks. Last week his counts were within the range with his ANC at 1300 and he received his monthly chemo. Back next week for recheck and to see if his meds can be increased.

We have also been busily researching preschools in hopes that Colin will be able to attend in the fall. We decided on one today. Colin took an instant liking to the teachers and activities available and the staff was very understanding of the anticipated breaks in attendance. All in all, it was an easy decision.

On Saturday, a friend hosted a golf tournament for Colin which was awesome! The weather was perfect and everyone had a great time! A big shout out to Dawn and her sister Arlene along with all the volunteers who helped the day go off without a hitch.

We've also had some weekend activities with other oncology families. The first was a sail on the Quinnipiac Schooner sponsored by R.A.C.E. We had a great time despite Maddie's horror of the boat/water. She must have screamed for the first hour. Most recently we attended The Dirty Socks concert (they're a Nickelodeon Band) and the tides shifted and Maddie had a great time however Colin was very hesitant but all in all it was a great afternoon out.

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Thanks for reading!

Counts Recovered

Easter weekend was a blast .. the kids loved all the egg hunts and once again they were spoiled by the family and our neighbors. Colin and Maddie had fun hunting for eggs left by the Easter Bunny. Quick story.....Saturday night Colin asked Daddy to put the basket of eggs on the deck so the Easter bunny could find them. Colin picked just the right spot on the deck and we "left" the eggs for the Easter Bunny....A little while later, as Colin was falling asleep, we went to retrieve the eggs....only to find 6 missing and the dog running away chopping on egg shells! Too funny! We'll post some pictures later this week.

Today Colin had a blood check and while his ANC has improved, it's improved more than the range they would like to see him in. His ANC was calculated at 3,700. The good news is that as his blood counts have recovered, he can resume his daily oral chemotherapy, starting at half the dose he was on prior to the halt in medication. The plan is to go back to clinic in two weeks for recheck. If still high, will increase dose by half until his ANC levels fall back in range between 750 and 1500.

If you haven't already ... you can sign up to receive our updates via email. Type your email address in the follow our journey box to the right. Click submit. Accept the confirmation via email and going forward you will receive an email when we post an update.

Happy Ending to a Stressful Day

We arrived at clinic today around 8:30 filled with mixed emotions. Our anxiety levels were heightened as Colin's sleeping routines changed dramatically from last Wednesday through Monday. Rather than pulling out every trick he had to avoid bedtime, he was asking to go to bed. He had also complained that his leg hurt on Monday. On one hand, we knew that steroids were a likely reason for his change in behavior but we were also very concerned based on continued low counts over the past few weeks. However, by last night, (a couple days after his last steroid dose) he was back to his normal self which gave us some relief.

Colin was a trooper as usual and went through the normal routines, including the needle sticks for his blood draw without a problem. We then quickly settled down with a movie, books and toys and waited for his blood counts to come back, praying for good results. Colin's buddy Dylan and mom were there which was a helpful distraction in easing the anxiety we felt.

Unfortunately, his ANC remained low (600) and Colin got ready for a bone marrow aspirate. By 11am, we were in the procedure room. He did very well during the procedure and he was slugging down apple juice and inhaling a banana soon after. Soon after that, he was up and back to activity table.

We were told it could take up to 24 hrs for the test results on the bone marrow although they would try to get them to us today if possible. (A big thank you to the staff as they were very supportive to us throughout the day). By 1 pm, we were home, trying to keep ourselves busy.

At a little past 4, we got the call. The lab tests were in and everything looks good. No relapse. No leukemia. We both cried some happy tears, had a family hug, and breathed a sigh of relief. Although we are still unsure what is causing Colin's counts to remain low, it appears to be something viral. So, back next week for a recheck. We will continue to withhold his home chemo until his ANC counts come back up to a minimum of 750.

Minutes after the news we packed in the van and made our way to the toy store where the kids were able to pick out a few toys. Colin was very happy as he's been asking to go to a store for a while now however we tend to avoid them when counts are low. But, this was something to celebrate! The evening ended with a home cooked meal from Auntie, Uncle Joe and Frankie along with Easter egg coloring.

Thank you for all the support, love and prayers over the past couple of weeks. Please keep them coming in hopes for higher counts next week. It's just about 10:30 so we're going to call it a day, a happy ending!

Love to all,
Mike & Heather

Highs & Lows

In many ways, the visit to clinic yesterday was a strong reminder to us of the reality and of the many highs and lows we have experienced as a family since Colin's diagnosis. Today we are experiencing one of those low moments.

Colin was scheduled for his quarterly lumbar puncture and chemo infusion. These visits are typically stressful, but this one was even more so as we anxiously awaited the status of Colin's ANC counts. As his ANC count has been low for the past couple of weeks we were hopeful his counts had rebounded and he could resume standard daily treatment.

Colin did very well getting ready for clinic. Upon arrival, he was accessed pretty quickly, blood was drawn, he began receiving his IV chemo and the numbing cream was placed on his back. All without skipping a beat or any fuss. We began playing in the infusion room while the numbing cream had a chance to kick in. Then, two Doctors came to our station and closed the curtain. We looked at each other with a blank stare and got an instant pit in our stomach as this was very unusual.

The Doctor explained that Colin's ANC count (600) remains below the threshold (750) necessary to safely administer his daily chemo dose at home. They explained that we should continue to hold the chemo and come back next week for a recheck on his counts. If his counts remain low, based on his treatment protocol, they will then perform a bone marrow aspirate to test his marrow and rule out any indication of a relapse. So, we wait until next week and pray that Colin's counts have improved enough to cancel the need to perform this test.

However, as a positive sign, they do not think there is an issue as all else looks good, and Colin's count will rebound in time. For example, they indicated that the daily chemo (6MP) is known to cause a low ANC as some children metabolize this drug much differently than others. Colin's daily dose was recently increased and it may be too strong. The Doctor requested an extra blood sample to test how Colin metabolizes 6MP. Or, it could simply be that his body needs a break and needs a little more time to rebound. So we wait until next week...

Colin did receive the lumbar puncture and IV infusion and did very well. After he had recuperated we played at the activity table. As we looked around we noticed many new faces and we witnessed a pretty young girl preparing for a trip to Boston which we can only assume is for a transplant. This was another reminder about the cancer world and how precious health really is.

Luckily, our visit did end on a good note, we were able to take part in a family photo shoot sponsored by Flashes of Hope, a fantastic organization of professional photographers that donate their time to capture lasting memories for families to treasure.

This will be a long week so please bare with us and our emotions. Thank you for all the voicemails, text messages, emails and facebook posts. It's days like this that we pull our energy from each and every one of you. Thanks for all your love and support.

Rebounding, No Chemo, Golf Tournament

Last week Colin had a CBC and the results indicated his ANC is rebounding (700) however it must be 750 for him to start his oral chemotherapy again. The Doctor's assured us this is normal and will happen from time to time when Colin is or was fighting off a virus. He's scheduled for a spinal tap next week and will receive chemo through the spin and IV. We also hope his counts are high enough to start his normal chemo schedule at home. Spinal tap days are always very emotional for us so please send some extra love our way next week. We had a great weekend with two date nights and enjoyed the nice weather! ~~~~~~~~~~~~~~~ A Golf Tournament to benefit Colin will be held next month. Date: May 14 Time: 8:30 shot gun start, 18 holes Place: Portland West Golf Course, Portland, CT Price: $95 per golfer or lunch only $20 Spots are limited so please message us if interested for more info. ~~~~~~~~~~~~~~~ Have a great week!

Follow our Journey by E-mail

We've added email notification to our blog. If you would like to receive notifications when we post updates please submit your email address in the 'follow our journey by e-mail' field below Colin's picture. Have a great week and pray with us for count rebounds!

Counts are Low

Today Colin had his routine blood check and we were disappointed to hear his counts are very low. His ANC is 200. As a result, he's been taken off all chemotherapy until his counts begin to recover. We will return to clinic next week for a recheck. This is not the first time he's been off chemo so we're hopeful it will be a short period of time before he's back on. In the mean time we need to lay low and are on high germ alert so visitors will be limited and we ask that visitors come and play another day if you have a sniffle or have been around anyone with a cold. Thank you in advance for your thoughts and prayers.

Long Island Bowl A Thon For Colin

Last weekend Heather's dear friend, Rhonda, who was a roommate in college and just completed her final phase of treatment for colon cancer, celebrated by hosting a bowl a thon for Colin and our family. The night brought over 60 competitive bowlers who enjoyed a bowling marathon while enjoying drinks, dinner provide by Rhonda and her friends and family, a silent auction and many raffle items. As we introduced ourselves and thanked everyone for coming we were overwhelmed by how many friends Colin and our family has in Long Island. We heard many stories of people who follow this blog and are extremely touched by the support we have received. Once again we thank each and every one of you who came out last weekend to support our family. And to the host, Rhonda, words can't express our gratitude.

ER - Fever

Yesterday Colin came down with a fever and we were instructed by the on call Doctor to bring him in. Mommy met Colin and Daddy there and the staff quickly took his vital signs and accessed him. Colin's ANC was 900 so that was great news as we were able to come home last night and dodged an inpatient stay. Colin stayed with Mommy in the ER while Daddy went home to relieve Auntie Liesl who was watching Maddie.

As a protocol for a fever Colin has to receive a two dose antibiotic so while waiting last night he kept busy watching movies, coloring and reading but once again the Child Life Specialist saved the day after a long struggle of getting Colin to take his Tylenol with a Diego flash light. This flash light kept us busy for hours.

We went back to Yale this afternoon for the second dose and becuase he hasn't been eating or drinking much he recieved a bag of fluids. This seemed to perk him up some. His counts however decreased overnight and his ANC is now 600. The Doctor would like us to treat this as he is neutropenic so no public crowded areas, visitors will be limited and we'll take extra caution on the germ front.

Thank you for all your support and prayers!

Counts are on the rise

Last week Colin had his monthly chemotherapy infusion of Vincristine and we're happy to say we've been busy enjoying this spring like weather so it's taken us a couple of days to send an update.

His ANC is on the rise coming in at 800. Along with the chemo last week Colin completed another 5 day stint of steroid. Steroid week usually brings on food cravings, bloating, irritability, night wakings and over night accidents. However, this month was different ... maybe it was all the fresh or was it that Colin decided it was time to give up diapers completely. The independent boy he is said "Mommy no diaper" when we got home from Yale. The thought of no diaper during nap was a messy one but better during nap then at night. So we made it through nap without an accident and then came bedtime ... "Mommy no, no, no diaper". "Okay Colin but you have to tell mommy or daddy when you have to go to the bathroom". "Okay mommy". Sure enough he got up and screamed for us and ran into the bathroom. This kid AMAZES us. So diapers are a history.

Maddie is getting her four eye teeth at once so she's had a long week .. not eating very much and has an upset stomach. That said, she hasn't slowed down one bit. She has learned it's fun to be outside now that she can get into everything and play along side her brother. She's also learned how to scream at the top of her lungs and throw a temper tantrum ... luckily they end pretty quick when we divert her.

Enjoy the weather while it lasts!

Colin's Counts Are Low & Maddie's 18 Month Check-up

Daddy here. On Thursday, Colin visited clinic for his normal blood draw and blood counts. We were surprised when is ANC came back at 500. With his counts low, and as he is already fighting off a cold, we prepared for a possible fever and trip to the ER. However, so far all is good. The weekend brought a visit from Auntie and cousin Frankie on Saturday and Julie on Sunday. On Saturday, while Colin and Maddie played with Auntie and Frankie, we were able to scoot out for some shopping and a lunch date!

After climbing out of his bed three times in two days we got the hint that Colin was ready for a big boy bed. To this point he's had no desire to change his bed but because of this new interest of climbing we took quick action, took out our "Handy Mandy" tools, and converted his bed to a 'big boy bed'. For the most part he's adapted pretty well but we have had a few nights of running around the house well into off duty time.

On the Maddie front, last week she had her 18 month checkup and we're happy to report she's developing and growing right on track. Her vocabulary has exploded and she's beginning to develop her own little personality and is a little diva who picks out her clothes with a hat and bag to accompany (oh boy!). Here are the numbers:

Height: 33.75 inches (90%)
Weight: 27.4 pounds (85%)
Head: 49cm

Colin's Crew Freezin for a Reason Polar Dip

On February 19th Colin's Crew hosted another successful event that benefited Camp Sunshine. While the wind was whipping outside, the West Haven Conference Center was filled with fun and anticipation as 2pm rolled around and 60+ plungers plus many more friends and spectators headed towards the refreshing 34 degree temps of the sound!. The event, Freezin for a Reason, raised over $16,000, enough to give 8 families the opportunity reconnect, recharge, and have some fun at Camp Sunshine! Picture video to follow shortly.

The Crew!

The plungers who raised over $16,000!

Chemo Day

Today Colin received his monthly IV chemo and started the 5 day steroid regimen. Colin's counts are in the range coming in at 1500 (ANC). Maddie also came and was quickly swept away by the volunteer (Judy) soon after we arrived. We love when Judy is there because it gives us time to focus on the treatment and doctor discussions, while Maddie gets to play with another "grandma"..

As soon as the IV was complete, Colin had a coughing attack. It may have been caused by the saline flush of his line which older children say they can taste. From there, it becomes a snow ball effect of him tasting it and trying to cough it out. However, within 10 minutes he was running around the joint laughing and playing again. Whew, what a brave boy we have.

Speaking of brave, Colin received his bravery beads today. Each bead represents a different type of visit, treatment, activity, ect. It's a visual representation of everything he's been through. It will be something we string together and hang in a safe place so he'll have as a reminder of how much he has overcome when he grows into a young man.

Good night!

Chalk

Yesterday our dear friend, Louise, invited us to a children's book signing for the author Bill Thomson. Colin was his typical self while we were there. He got silly with Bill by posing for a knuckle photo and showed off his new book to the photographer, Rich Marinelli. As you can see by the photo below he kept the photographer on his toes with of an awesome action shot as he let his new book hit the floor. Maddison got cozy with Louise and brought smiles to the American Eagle Credit Union girls.

Since Colin received the book he's read it a dozen times, well not really read but look at the pictures ... it's a great book for a three year old because it doesn't have any words. It's all about using your imagination and we've had alot of fun hearing what he comes up with as he turns the pages!

*Photos courtesy of Rich Marinelli.