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!
Sunday, July 8, 2012
Friday, June 29, 2012
Update Written by Cousin Frankie
Tonight's post is written by Cousin Frankie:
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.
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:
Monday, June 25, 2012
Clinic Visit
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/
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/
Sunday, June 24, 2012
Ups & Downs
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/
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/
Wednesday, June 6, 2012
Bittersweet
Well, it's been a while ...
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.
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.
Subscribe to:
Posts (Atom)
