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
Monday, March 29, 2010
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!
Thursday, March 18, 2010
Update from GiGi!
Hi everyone - it's GiGi here,
Today I have been honored to come to the clinic with Colin and stay while he has his treatment. My usual assignment is to stay with Maddie at home but today I have been assigned a different task. While Colin now sits and watches Elmo and Bob the Builder in rotation I am amazed at how well he and his mother have made an otherwise scary day into a routine for all. After arriving and getting prepped for chemo, there were special hi's and hugs around for everyone.
The staff who are now all d entrenched at the Smilow Hospital are caring, calm and nurturing to everyone. Colin has read at least ten books with a volunteer, played with clay and play dough with another two young boys, and during all this the infusion room has become filled as more and more children come in and get 'hooked up'. It is an amazing site. These kids behave like mini adults taking all this in stride, parents have lunches packed, and exchange stories while kids socialize, play with each other and set up card games. It is as peaceful as a serious place like this can be.
There is much to be said for parents who have children who fight this dreaded disease. They are truly angels and I am thankful especially for the parents of my munchkins, they are being prepared for sainthood right here on earth. We all love you, keep up the good work.
There are not enough compliments for the new Smilow Hospital and I applaud all the staff and the facility itself. Even the healing garden, just off the infusion room is amazing but as any parent or grandparent will agree, our wish is for a cancer free life for our kids. Think good thoughts as you think about Colin and as you pass by the wonderful facility and its staff at the new Smilow Hospital in New Haven that treats our munchkin and many of his new friends. Be happy that you haven't had to come inside and be thankful that it's there for those who do.
The staff who are now all d entrenched at the Smilow Hospital are caring, calm and nurturing to everyone. Colin has read at least ten books with a volunteer, played with clay and play dough with another two young boys, and during all this the infusion room has become filled as more and more children come in and get 'hooked up'. It is an amazing site. These kids behave like mini adults taking all this in stride, parents have lunches packed, and exchange stories while kids socialize, play with each other and set up card games. It is as peaceful as a serious place like this can be.
There is much to be said for parents who have children who fight this dreaded disease. They are truly angels and I am thankful especially for the parents of my munchkins, they are being prepared for sainthood right here on earth. We all love you, keep up the good work.
There are not enough compliments for the new Smilow Hospital and I applaud all the staff and the facility itself. Even the healing garden, just off the infusion room is amazing but as any parent or grandparent will agree, our wish is for a cancer free life for our kids. Think good thoughts as you think about Colin and as you pass by the wonderful facility and its staff at the new Smilow Hospital in New Haven that treats our munchkin and many of his new friends. Be happy that you haven't had to come inside and be thankful that it's there for those who do.
Thursday, March 11, 2010
Transfusion
Tonight we sit here looking back at a long week ... three days at clinic and a couple of long nights that included food requests and unexpected slumber parties. But once again our little guy makes us proud.
On Friday , Colin had a guest, Auntie Courtney, by his side during his red blood transfusion. This was Auntie's first visit to clinic and entertained Maddie while Colin and Mommy prepared for the transfusion and eventually got cozy in the big green chair... did we tell you the new chairs are heated? Colin's energy level is pretty low so he was happy just watching videos and only made a small dent in the library.
Almost immediately Colin regained color in his face and his energy level increased over the weekend ... we were happy to hear "Mommy, play" again. Next treatment is scheduled for Thursday.
Maddie also shocked us all and fell asleep in Auntie's arms ... was it Auntie's touch, all the stimulation from the colors and people or exhaustion from playing in the clinic's pac and play? Guess we'll never know but we're very happy and thankful for all the additions to the clinic which has helped to create a more relaxed atmosphere.
p.s. note to self never buy Colin a grilled cheese with orange cheese. After testing one Colin rejected it and sent Daddy on a mad search in downtown New Haven for a grilled cheese with white cheese. After buying a few slices from a local restaurant and treking back to the hospital cafe for a second attempt , Daddy finally returned with an approved sandwich.
On Friday , Colin had a guest, Auntie Courtney, by his side during his red blood transfusion. This was Auntie's first visit to clinic and entertained Maddie while Colin and Mommy prepared for the transfusion and eventually got cozy in the big green chair... did we tell you the new chairs are heated? Colin's energy level is pretty low so he was happy just watching videos and only made a small dent in the library.
Almost immediately Colin regained color in his face and his energy level increased over the weekend ... we were happy to hear "Mommy, play" again. Next treatment is scheduled for Thursday.
Maddie also shocked us all and fell asleep in Auntie's arms ... was it Auntie's touch, all the stimulation from the colors and people or exhaustion from playing in the clinic's pac and play? Guess we'll never know but we're very happy and thankful for all the additions to the clinic which has helped to create a more relaxed atmosphere.
p.s. note to self never buy Colin a grilled cheese with orange cheese. After testing one Colin rejected it and sent Daddy on a mad search in downtown New Haven for a grilled cheese with white cheese. After buying a few slices from a local restaurant and treking back to the hospital cafe for a second attempt , Daddy finally returned with an approved sandwich.
Treatment Day
Here we are sitting in the new clinic which is now equipped with a computer room. So, while Colin and Daddy get some shut eye I thought I would give everyone a quick update...
Over the last couple of days the chemo and steroid has started to take a toll on Colin. He's very irritable, tired and hungry. The food of choice seems to be grilled cheese with a record high of six and a half in one day with the first request coming in at 2:30 am! We've had a number of nights where Colin has asked to go to bed which is very uncommon and just a few hours later he's up asking to play or read books. This starts our long nights while it snowballs into waking Maddie up and vice versa.
Today started bright and early with the first grilled cheese request at 1:00 am. And, I'm not sure if Colin is passing his hunger onto Maddie but she was awfully hungry last night waking four times to eat!
While I'm typing this update Colin is receiving his second round of chemotherapy for this phase. Our visit started around 8:30 and will end around 4:00 due to the infusion time necessary for this round of chemo drugs.
We'll be treking back down here in the morning so Colin can receive a red blood transfusion. Please keep those thoughts and prayers coming our way.
Over the last couple of days the chemo and steroid has started to take a toll on Colin. He's very irritable, tired and hungry. The food of choice seems to be grilled cheese with a record high of six and a half in one day with the first request coming in at 2:30 am! We've had a number of nights where Colin has asked to go to bed which is very uncommon and just a few hours later he's up asking to play or read books. This starts our long nights while it snowballs into waking Maddie up and vice versa.
Today started bright and early with the first grilled cheese request at 1:00 am. And, I'm not sure if Colin is passing his hunger onto Maddie but she was awfully hungry last night waking four times to eat!
While I'm typing this update Colin is receiving his second round of chemotherapy for this phase. Our visit started around 8:30 and will end around 4:00 due to the infusion time necessary for this round of chemo drugs.
We'll be treking back down here in the morning so Colin can receive a red blood transfusion. Please keep those thoughts and prayers coming our way.
Monday, March 8, 2010
PEG Day
Today Colin received what we think is his last peg shot (chemo injection by shot in each leg). Despite his unhappy mood he still managed to charm the nurses and the volunteer. Once the volunteer spotted Colin she came right over to him and within seconds they were headed to Kacey's Corner, the new library in the clinic. They read story after story while Maddie flirted with everyone who walked by. This marked the first visit Mommy, Colin and Maddie made the trip solo.
The effects of the chemo/steroid has already started to take a toll on Colin. Over the past couple of days Colin has been tired and irritable. However, the nice weather helped to perk his mood with some playtime outside. Here are a couple of pictures of Colin "reading" to his little sister after some outdoor playtime and settling down for a nap.....
The effects of the chemo/steroid has already started to take a toll on Colin. Over the past couple of days Colin has been tired and irritable. However, the nice weather helped to perk his mood with some playtime outside. Here are a couple of pictures of Colin "reading" to his little sister after some outdoor playtime and settling down for a nap.....
Saturday, March 6, 2010
Delayed Intesification
Well, Colin is officially in the next phase of treatment, delayed intensification, as his blood counts were above the necessary threshold to begin this phase of treatment. This marks the first phase of treatment he has been able to begin on schedule! This also marked the first visit at the new Smilow cancer center at Yale. The new center is absolutely fantastic.
As expected, it was a long day for Colin but he did very well. We arrived at clinic at 8:30 and were there until close, 5pm. He received his intrathecal dose of methotrexate through a spinal tap, then vincristine through IV and a new chemo drug that is infused over 4+ hours. He also started his next cycle of steroids on Thursday night.
On Friday Colin enjoyed playing with Auntie Courtney and Uncle Mike .. they went for a walk, colored, read and did sponge capsules. Today Colin was so excited to play outside. While mommy, Colin, Maddie and Aunt Liesl colored with chalk in the driveway, daddy and cousin Frankie put together Colin's big wheel, which was a Christmas present from Grandma and Grandpa. Colin had a blast on it. Although he could not quite reach the pedals, it rolled down the driveway just fine!
Back to clinic on Monday for a PEG shot and Thursday for chemo .....Thank you for all your positive thoughts and prayers and please keep them coming!
As expected, it was a long day for Colin but he did very well. We arrived at clinic at 8:30 and were there until close, 5pm. He received his intrathecal dose of methotrexate through a spinal tap, then vincristine through IV and a new chemo drug that is infused over 4+ hours. He also started his next cycle of steroids on Thursday night.
On Friday Colin enjoyed playing with Auntie Courtney and Uncle Mike .. they went for a walk, colored, read and did sponge capsules. Today Colin was so excited to play outside. While mommy, Colin, Maddie and Aunt Liesl colored with chalk in the driveway, daddy and cousin Frankie put together Colin's big wheel, which was a Christmas present from Grandma and Grandpa. Colin had a blast on it. Although he could not quite reach the pedals, it rolled down the driveway just fine!
Back to clinic on Monday for a PEG shot and Thursday for chemo .....Thank you for all your positive thoughts and prayers and please keep them coming!
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