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Tuesday, April 27, 2010

Rebounding

On Monday Colin, Mommy, Maddie and Aunt Liesl headed down to clinic for a routine blood check. Our wait for the results turned into another play date for Colin. It started with Aunt Liesl reading a pile of books, playing with puzzles and 'big boy toys'. Soon after the results were in and evan though Colin's ANC went down from the week before, from 200 to 100, he did not need a transfusion.

As we headed out the door we ran into Hannah and her mother, an ALL friend of ours. The two quickly got comfortable at the table with a coloring book and crayons. They even blew each other kisses as we left... priceless

Thursday was a quick visit as Colin's counts are coming up (ANC 600). He will continue to be chemo free for at least another week. The appointment next week will be count dependent so if his counts are at least 750 he will begin the final stage, maintenance. The Doctor's are pretty confident he will be ready next week but have prepared us for a delay as Colin has not started any of the phase on time due to low counts.

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On the Maddie front ...

She has mastered crawling and is into everything so it's time to baby proof again. Colin attempts to have races with her while giggling ... he looks back with a look wondering what is taking her so long. But sure enough she catches up with just enough time to exchange belly laughs and they quickly continue this process over and over again. Tonight it ended with Maddie's first swollen lip as she went head first onto the kitchen floor. She's going to be a tough girl :)

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Thank you. Once again we're blown away by all the support that surrounds us. Just two weeks after Colin's Crew launched the facebook page we have nearly 450 fans. Please know that we read each and every note that comes our way whether it's email, facebook or snail mail it's one of the things that keeps our strength strong.

Thursday, April 22, 2010

Neutropenic

Today we had quick checkup ... counts are still low (ANC is 200) but Colin is hanging tight so no need for a transfusion. He kept busy while we waited for the blood count results playing at the activity table with Erica and keeping himself occupied with multiple games. He was having so much fun he didn't want to leave! Kudoos to the Smilow center and wonderful staff!

We now enter into a stage where Colin will be off all chemotherapy, giving his bone marrow and his blood counts the chance to rebound. From there, Colin will start the longest, yet least intensive part of treatment, maintenance. We have been told to except a 2-4 week period before he is ready to begin this final phase of treatment.

Thank you for all the love, prayers and support you have been sending.

Monday, April 19, 2010

Quick Check Today

Today Colin, Maddie, Mommy and Aunt Liesl headed down to Yale. Colin was sure to show Aunt Liesl the entire routine without skipping a beat. He showed her the school bus doctor, tractor park, owls, train, healing garden, fish tank and the one and only Kacey's library. While his counts are still decreasing Colin did not need a transfusion today. Back to Yale on Thursdays for another check and possible transfusion.

Friday, April 16, 2010

Blood Transfusion

On Thursday we went to clinic for our regular visit which included blood counts. As anticipated, Colin’s red cell count was down and he needed a transfusion. While waiting for the blood to arrive Colin was able to spend some time with his new buddy, Dylan. It wasn’t long before we realized they were dressed exactly alike and were the talk of the room. Colin seems to look up to Dylan while they read and play together.


To breakup the morning we decided to take a walk in the new healing garden. As we neglected to bring a hat for Colin, we raided the clinic’s hat rack and came back with a Red Sox hat to satisfy Mommy. Not soon after returning Colin was at the activity table playing with his girlfriend, Hannah, who is also a Red Sox fan. While we continue to tell people Colin is confused since we're a mixed household it sure does make for great conversation!
Colin continues on the same treatment regiment as last week. The chemotherapy treatment for this phase will be completed on Wednesday. The doctor’s have continued to advise us that over the next week(s) he may need additional transfusions as his blood counts begin to recover and he is able to enter into the final stage, maintenance.

Once again we're speechless with the amount of love and support we've received. Within 48 hours of launching the Colin's Crew facebook page we have 134 fans. All we can say is thank you and we'll try to keep you all updated as often as possible.

Saturday, April 10, 2010

Second Leg of Delayed Intensification

Our upfront apologizes for the long post.... we were without a computer for a while and have a lot to capture!

On Thursday, Colin started the second half of delayed intensification. The new chemo drugs for this phase are targeted on the bone marrow. We expect Colin to need transfusions for red blood cells and probably a transfusion for platelets as well. His ANC will also go down. This is expected as this is the last intense phase of chemo before starting maintenance therapy. The goal is to destroy any undetectable traces of leukemic cells from his body.

The day started with fasting and when we arrived at clinic at 8:30, blood was drawn. As we were waiting for the results we took our usual trip to Kasey's Corner library and gathered our reading material. After an exam and a chat with the nurse, Colin's counts were in and his ANC increased from last week to 800, 50 points above the minimal threshold necessary to start treatment. We quickly made our way into the infusion room where we were greeted by one of Colin's favorite nurse's. Colin choose his favorite spot and we setup camp for the day.

Colin's port didn't want to cooperate so it took a couple adjustments and some fluid (aka tuby juice) to get a blood return. He received a spinal tap with methotrexate and once again he made Mommy and Daddy very proud, talking and giggling through the procedure with limited tears.

When the procedure was finished, Colin then received a lot of hydration by IV in preparation for the next chemotherapy drug, Cytoxan. As this drug is harsh on the bladder and kidneys, extra hydration is necessary prior to administration. Once he was fully hydrated he received Cytoxan through IV. He also received a third chemo drug, Cytarabine which was given through an IV push. The final step of the afternoon was three hours of additional hydration so we ended closing the joint at 5pm.

That evening Daddy enjoyed a night out with his parents, sister, Gigi, Aunt Ginny and Nanny at Westbrook Lobster to support the Kasey Rose Foundation. Back on the home front Colin started a new oral chemo drug, Thioguanine, which he doesn't mind taking crushed up diluted in juice .. thanks ALL mom's for the advice.

The home nurse visits started on Friday and ran through the weekend. She administered the next 3 doses of Cytarabine which was given through an injection in Colin's leg. Mommy made sure the site was good and numb with Emla prior to the nurse arriving. Colin did a great job, picked out his own band aide (elmo) and was off and playing in no time.

Next scheduled clinic visit is Thursday.

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On the Maddie front she is officially on the move .. rolling and creeping (pushing back on the hardwood floor) to anything and everything. It's just the matter of days before she's crawling because she gets up on all fours and rocks. While sitting in the wagon with Colin last weekend she took a handful of his cheerios and well the rest is history she wants nothing to do with baby food. It's also time to lower her mattress because she was sitting up after her nap yesterday. Is she really 8 months old already?
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On Easter morning, Colin and Maddie received the motorized jeep (pictured in the last post) from our neighbors. Colin is the hottest kid in the neighborhood riding this thing and it only took him a day to learn how to drive it. What a generous gift. The smiles are priceless, thank you!
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On March 30th, Colin lost his doctor, Diana Beardsley. She was the doctor who diagnosed Colin and was his primary oncologist right up until her unexpected passing. While Mommy and Daddy took this very hard we now know that Colin has another special person looking over him. When Mommy and Daddy were asked to share something special about Dr. Beadsley we each had a little something to say ...
  • Ringing in the new year for 2010 will always be remembered. Colin awoke with a fever 2 minutes before midnight on New Years Eve. We promptly called the clinic for instructions. Dr. Beardsley was on call and she was wonderful, reassuring us and keeping us calm. Rather than directing us straight to the Emergency room, she spoke to us every hour throughout the night to monitor how he was doing. Her reassuring and compassionate manner will always be remembered.
  • It didn't take Colin long to associate people in white lab coats as "scary". As soon as Dr. Beardsley heard about this, she always remembered to remove her coat before approaching and talking to or examining him. Just another simple, yet thoughtful act that will not be forgotten.

Friday, April 2, 2010

No treatment last week

Our computer has been acting up so below is a quick update.

To start the next four weeks of treatment Colin's counts must be at least 750 and unfortunately they were in the 400's last week so he did not receive treatment. The nurse is confident he will be ready this Thur so in the mean time we have a little vacation from chemo drugs.

We had a nice relaxing weekend as we prepare for the second half of this phase. Next appointment is Thursday and if Colin's counts are ready we will have a long clinic day that will start with a blood check and if ready he will receive chemo through a spinal tap, IV and injection.

Hope you all had a Happy Easter!