Wednesday, October 28, 2009

One Month Post Diagnosis

Friday Follow Up Appointment: Colin's follow up appointment on Friday went very well - counts continue to increase and we got the okay from the Dr to take him to a couple of houses for Halloween. ANC level nearly tripled in three days!

Halloween: Colin was very excited to dress up for Halloween, he was Dr Colin and sported elmo slippers. Maddie was a Yankee cheerleader against Mommy's better judgement but Daddy was happy! Daddy made his famous stew, which has now become a Halloween tradition. Colin and Maddie spent the evening with Grandma, Grandpa, Nanny and Poppy and went to the neighbors houses to show off their costumes. They were pooped and in bed by 7:00.

Earlier in the Week: As the therapy and medications begin to take on a cumulative effect, things have become a little more challenging ... Colin goes through periods where he just doesn't know what he wants (a side effect of the steroid he is on) - his mood changes very quickly. Also have we mentioned he's eating us out of the house? The Doctor's response to this was "there is nothing worse than a two year old on steroids" (lol).

Temperature: He scared Mommy on Wednesday with a slight increase in temperature - it didn't result in anything but a worried Mommy. Needless to say, we learned the day after chemo is a tough day for Colin.

This week: On Tuesday Colin is scheduled for a spinal tap which is how he will receive his chemo this week. He will also have a bone marrow aspiration. The results of this test will determine the next course of treatment.

Tuesday, October 27, 2009

Blood Counts on the Rebound

It's been a couple of days ... our weekend was full of family fun. Friday started with a visit to the hospital for a routine blood check. Colin's blood count is starting to improve so Mommy and Daddy were relieved. Maddie played with Aunt Liesl in the morning and later that afternoon Auntie Courtney came over to play. Uncle Jack is finally feeling better so he came straight over once in town (he came home from school for the weekend). This is the first time Uncle 'god father' Jack was able to spend time with Colin since Colin was diagnosed. They played and read lots of stories. The night was full of family love ... Gigi, Grampy, Grandma, Grandpa, Auntie Courtney and Uncle Jack all stayed through dinner.

As the treatments go on Colin is getting more tired and clingy so we spent most of Saturday and Sunday snuggling!

Today, Colin received what we hope may be his final chemo treatment for this phase and wore his new scrubs which he was very excited about. All the nurses said Dr. Colin is sooo cute in scrubs. A big thanks to the crew at Waymark Associates! What an awesome gift! Colin's blood counts are still on the increase :) Erica from Child Life was able to pull some magic and coordinated a visit from Zoe the volunteer dog.

Maddie started the day with Gigi and then Grandma and Grandpa relieved her. Grandma and Grandpa were able to spend some quality time with Colin reading and playing before he headed off for a much needed nap.

Next routine blood check on Friday and then spinal tap and bone marrow test next Tuesday.

Thursday, October 22, 2009

Bone Marrow Test Results

Today we received a call from Carolyn, Colin's Nurse Practitioner, who had good news about Colin's bone marrow test. Last week the cancer cells were reduced to 54% but this week he's down to 0.4%. She is very pleased with his progress and said his body is doing everything it needs to do right now. In the morning we're headed to Yale so they can check his blood counts before the weekend.

Colin was very tired and clingy today, he took an early nap. Later in the day Mommy, Colin and Maddie enjoyed a nice walk in the 70 degree October weather. Gigi stopped over with dinner from another friend and took some time out to snuggle with Colin on the couch. When Daddy came home Colin had already eaten dinner so it was play time with Daddy before bed. Did I mention he's eating us out of the house? The steroids must be working.

Pictures from buzz day were added to yesterday's post.

Today Colin has 50 crew members (followers) ... we're speechless.

Wednesday, October 21, 2009

Buzz Day

Today Colin was a little sleepy, he took two naps and enjoyed laying on the couch watching cartoons for most of the day. Aunt Liesl came with lunch and read Colin LOTS of stories. Colin gave Maddie kisses as she sat in the bumbo seat for the first time. Gigi delivered another dinner, what great friends she has!

We ended the day with a visit from Brenda, Colin's home away from home while Mommy and Daddy are at work. She gave Colin a buzz cut. So handsome ... we'll post pics tomorrow :)

Tuesday, October 20, 2009

Fourth Chemo Day

This week Daddy started a new work schedule working four ten hour days to be able to come to clinic for important visits.

The three of us headed down to New Haven early this morning for our 8:30 appointment. Thank goodness we made it early because Colin couldn't eat anything after midnight last night and all he wanted this morning was his milk. Did I tell you all he's eating us out of the house with the steroids he's on. Anyway, once down there Colin was prepped and received another bone marrow test. He was much calmer this time than from previous. His platelet count is rebounding but his hemoglobin came down so he received a transfusion today. His immune system is VERY low right now so the doctor reminded us that Colin should not be around anyone who is sick.

On the Maddie note, she only got up once last night ... Yipppeeee! Gigi started out the day with Maddie and was relieved by Grandma and Grandpa.

Once home we went for a nice family walk, Colin walked for a while so he was pooped when we got back. He was asking to go nighty nighty at 6:00. We were able to hold him off until 6:45, gave him is meds and off to lala land he went.

Thanks for all the thoughts and prayers today :)

Launched Website

Today we distributed the link to this website to family and friends. Please log on often as this will be our way to update you all on Colin's progress. Also, be sure to add yourself as a follower.

Sunday, October 18, 2009

Another Family Day!

Today was another great family day. Maddie and I went grocery shopping in the morning while Daddy and Colin cooked a turkey. Aunt Liesl, Uncle Joe and Frankie stayed for dinner. Gigi dropped off baked ziti and meatballs which Colin got into right away. Another great dinner for a week night. Bath and bedtime was early tonight .. everyone was tired from playing all day.

Saturday, October 17, 2009

Family Day

Today was the first day the four of us were home together in a long time so we spent the day doing NOTHING but relaxing as a family. A visit from Uncle Ron, Aunt Kerrie, Morgan and Rachel made our day.

Friday, October 16, 2009

Clinic Day

Today Colin's platelets were boarder line so he received a transfusion since we're approaching the weekend and our next scheduled clinic day isn't until next Tuesday. Colin did great .. not a peep out of him when they drew his blood. He napped during the transfusion and was very fussy when he woke up. But it was only the matter of minutes until he was his happy self again. Once we got home he made himself cozy on the couch and watched cartoons.

Thursday, October 15, 2009

First Emergency Visit to Clinc

Today Mommy and Gigi took Colin in to have his blood tested because he was very pale and not himself. Counts came back okay but they want to see us again tomorrow. It's going to take some time for us to pick up on Colin's cues.

Wednesday, October 14, 2009

Welcome home Colin and More Good News

Came home today! Packed up and left the hospital by 11:30. Went for a walk when first home and then had a great lunch. Colin had a huge smile when he saw his bed at nap time. More good news .. the nurse called and told us Colin's test results came back and he's responding well because half the cancer cells are gone already and spinal fluid was clear. Still on for bone marrow next week. Grandma made ravioli for dinner. Shared it with Gigi, Papa, Grandma and Grandpa. Organized all of Colin's meds and Colin successfully took them all. Ran to Walmart for a new high tech thermometer. Everyone off to sleep in their own beds :)

Tuesday, October 13, 2009

Third Chemo Day

Mommy came back to the hospital. Maddie spent the day with Brenda again and Daddy worked a half day. 12:30 Colin had his second chemo treatment via IV and through the spine. Colin also had a bone marrow aspiration. Jeff came in to provide sedation and Carolyn performed procedure. Colin was very upset after the procedure but calmed down after given juice and anti sedation med. Grandma and Grandpa came and helped keep Colin busy. Daddy had sleep over and Mommy was home with Maddie.

Monday, October 12, 2009

Chromosone Test Results

Daddy went back to work. Maddie spent the day with Brenda. Mommy dropped off scripts and spent the day with Colin. Dr. Beardsley came in to tell Mommy good news. The gene type came back and Colin has a favorable gene/chromosome matching. Daddy met mommy at hospital after work and spent the evening with Colin. Gigi had a sleep over with Colin and mommy and daddy left after he fell asleep.

Sunday, October 11, 2009

Hospital Day Nine

Daddy and Colin were cruising by 9am and then colored and played until nap time. Nanny and Poppy came and brought Colin a match box car to add to his daily collection. Gigi's friend brought dinner for Mommy and Daddy. Gigi came back for another sleep over.

Saturday, October 10, 2009

Family Dinner, Hallway Car Races and a Visit from Dolly

Yogurt is still working with the steroid pill. We took a family walk in the morning and Colin brought back a book to read. Dolly the volunteer dog came to visit Colin and made his day.

Family dinner in the family lounge (Gigi, Papa, Nanny, Poppy, Courtney, Mommy, Daddy and Colin). Jack wasn't feeling good so he stayed home to protect Colin. Courtney made a pork roast which she brought in in a crock pot. After dinner we had car races down the hall. Gigi and Papa had a sleep over with Colin while Mommy and Daddy went home to check on Maddie who Grandma and Grandpa were watching.

Friday, October 9, 2009

Second Chemo Day

Colin took his steroid pill today with yogurt. First day without the IV. Platelet count came in low, received transfusion to increase the count in preparation for chemo later today. Colin was a trooper for the chemo shot, he was off cruising the halls within five minutes...we had a family race. Daddy and Colin had a slumber party and watched the Yankee game.

Thursday, October 8, 2009

Full Day of Hospital Activities

Grandma and Grandpa came early and we all went to story time and activities. GiGi and Papa played all afternoon. Courtney brought dinner for two for mom and dad and posted a 'no visitors' sign on the door. Colin had a great time on the patio with Gigi and Grampy.

Wednesday, October 7, 2009

Hospital Stay Extended

Because of the fever Colin had to stay in the hospital for an extra week while they monitor him for infection.

A visit from the hospital dog volunteer made Colin's day.

Tuesday, October 6, 2009

Subtype Results, First Chemo Day

Met with the medical team to review leukemia subtype and to discuss treatment options. Grampy came with us as a third set of ears. Chemo started at 8pm. Fever was identified during vital signs around 11pm. IV antibiotics started and blood sample was taken.

Monday, October 5, 2009

First Chemo Day

Colin received his first chemo treatment Monday 10/5 and was in good spirits. He made many new friends and flirted with the nurses by blowing them kisses and giggling with them. His bedtime routine was 'cruising' the floor on his little tike car saying "nighty nighty" to all the nurses and doctors.

Saturday, October 3, 2009

Room 726

We made room 726 on the PICU floor of the children's hospital our home for 12 days.

Friday, October 2, 2009

Admitted to the Hospital

Colin had his two year check up on Wednesday 9/30/2009 which identified an abnormal hemoglobin count. His pediatrician referred us to Yale for additional blood work. Since Colin had also been recently seen for a limp when walking, additional blood work was ordered. On the morning of October 2 Colin and Mommy headed down to Yale where they took the blood sample. Within a few hours we received a call from the pediatrician instructing us to bring Colin to Yale to be admitted for further evaluation. We brought Colin through the ER and were admitted in the early evening. Further blood work and bone marrow biopsies identified the type of childhood leukemia as Acute Lymphoblastic Leukemia, "ALL". The subtype is called precursor or pre-B. Each of these factors are known to be highly treatable.

(in the car before admission)