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.
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.
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.
~~~~~~~~~
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?
~~~~~~~~~
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!
~~~~~~~~~
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 ...
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.
~~~~~~~~~
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?
~~~~~~~~~
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!
~~~~~~~~~
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!



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!
Monday, March 29, 2010
Helpless - tissue alert
Below is a post I wrote last week and am just getting the courage to post it. We've shyed away from sharing our inner thoughts because those of you that know us will agree we're very private people. I've decided to share this because it's a turning point of emotions for me.
Today I sit here with my arms wrapped around Colin. He snuggles into me as we rock and listen to twinkle twinkle little star playing from his mobile. He slowly drifts off to sleep and I too close my eyes moments after looking at his shirt which is covered with his lost hair. I rub his head and feel the remaining hair. One tear leads to another as the feeling of helplessness takes over. As I let my mind wonder I soon find myself asking why and the only answer I can come up with is why not as a wise women once said to me. As I wish I could take this pain and experience away from him and our family I realize Colin and our family was chosen to be part of this journey for some reason or another and only time will provide that answer. I slowly recognize my feeling of crisis is turning into a feeling of the new norm as we prepare for the last four weeks of delayed intensification and soon enter the second leg of this journey, maintenance which is another two and a half years.
I love you Colin and we will kick this together,
Mommy
Today I sit here with my arms wrapped around Colin. He snuggles into me as we rock and listen to twinkle twinkle little star playing from his mobile. He slowly drifts off to sleep and I too close my eyes moments after looking at his shirt which is covered with his lost hair. I rub his head and feel the remaining hair. One tear leads to another as the feeling of helplessness takes over. As I let my mind wonder I soon find myself asking why and the only answer I can come up with is why not as a wise women once said to me. As I wish I could take this pain and experience away from him and our family I realize Colin and our family was chosen to be part of this journey for some reason or another and only time will provide that answer. I slowly recognize my feeling of crisis is turning into a feeling of the new norm as we prepare for the last four weeks of delayed intensification and soon enter the second leg of this journey, maintenance which is another two and a half years.
I love you Colin and we will kick this together,
Mommy
Saturday, March 27, 2010
Overdue Update
The mix of the new chemo meds and steroids caught up to Colin resulting in a long couple of weeks. Since the last post we've made two trips down to Yale. The first was on Monday of this past week for an unscheduled blood check. We initiated this visit because Colin was extremely irritable and eating very little. We were glad to hear his counts were okay and ruled out a possible blood transfusion. After a couple of exams and attempts to look in Colin's mouth, the doctors came to the conclusion he may have some throat sores. His new favorite foods are milk, american cheese "straight up" (no bread) and yogurt (aka 'yo baby ... dora' strawberry flavor only). Since his counts were okay Colin started taking tylenol for the pain.
On Thursday we returned to Yale for our scheduled appointment. We were pleased to hear his blood counts continue to be high enough to eliminate the need for a transfusion. If his blood counts continue to trend well, he will begin the second phase of delayed intensification on Thursday.
Just today we started to see a glimpse of the true Colin as the steroid leaves his body .. we look forward to hearing him laugh and seeing him smile more in the coming days!
On Thursday we returned to Yale for our scheduled appointment. We were pleased to hear his blood counts continue to be high enough to eliminate the need for a transfusion. If his blood counts continue to trend well, he will begin the second phase of delayed intensification on Thursday.
Just today we started to see a glimpse of the true Colin as the steroid leaves his body .. we look forward to hearing him laugh and seeing him smile more in the coming days!
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