Wednesday, January 27, 2010

Website Update

Tonight our cousin, Morgan, helped us change a feature in the comment section of the website. Colin's crew registered or not should be able to leave a comment by simply clicking on the comment link found at the bottom of each post. In the past users had to be signed in but this is no longer the case so if you forgot your password you are in luck! Messages are still sent to us to read and post prior to publishing therefore your message my not appear right away. Be sure to sign your name within the comment or plug in your e-mail address when prompted so we know where the love is coming from.

Once again we thank you all for your love and support. Keeping sending us positive vibes.

Tuesday, January 26, 2010

Three down, two to go!

Yesterday Colin received his third treatment of this phase (two more to go)! We were extremely relieved when the nurse told us Colin's ANC level was 1188 (has to be 750 for him to receive treatment). We were concerned it had come down because he was more irritable the days leading up and ate very little. Colin shared Dunkin Donut munchkins with the nurses and played with everything in sight however nothing satisfied him until he was in his car seat with teddy snuggled under the blanket. We weren't even out of the parking garage before he was fast asleep.

Next treatment is Thursday of next week.

Thursday, January 21, 2010

Lyman Orchard's

Today Mommy brought Colin and Maddie to Lyman Orchard’s to feed the ducks. Since Colin cannot go into public places we’ve gotten a little creative during the winter months finding activities to bring a smile to our two year old.

Upon arrival I realized we didn’t bring food for the ducks but I was determined to find a way. With two children in the car I thought I’d ask one of the customers walking in to purchase us a bag of food however when I approached the door I ran into an employee and asked if she could help me. I explained our situation and how I couldn’t bring Colin into the store and would she be able to purchase a bag of duck food for us and bring it back out. Without hesitation she said of course so I handed her the dollar and she quickly returned with a smile and a bag of food.

As we were feeding the ducks this kind employee walked through the parking lot and brought Colin another bag of duck food. This is such a small gesture however it was huge for my son and priceless for me to see his smile while feeding the ducks.

We hope to run into this employee again on our weekly visits and hope we can catch her name next time.

PEG Shots

On Tuesday Colin received his first of two PEG (chemo) shots for this phase and once again he was so brave. Daddy took Colin down to Yale since Mommy had to work. This was our first afternoon appointment (2:00) and I hope we can avoid this time slot again ... smack in the middle of nap time! While at clinic, Colin and Daddy were the only patients there so they had the whole place to themselves. Colin got to pick where he wanted to sit. Five minutes after the shot, Colin was up and moving, ready to start playing at the activity table. He was in his glory, SpongeBob on the tube, graham crackers in hand, and tons of toys to pick from.....the resilience of a 2yr old is amazing.

Sunday, January 17, 2010

Two Down, Three To Go For This Phase

On Friday Colin received his second treatment of this phase. He will receive a total of five treatments throughout this phase in addition to two peg shots (chemo). Once again he was a trooper and told the nurse which arm to draw his blood from. We were headed for a walk while the lab processed Colin's blood but as we stepped out of the exam room one of the nurse's stopped us and told us he was ready! His ANC (absolute nutraphile count) was 1900, which is great news. His ANC must be at least 750 for him to receive treatment during this phase.

Once Colin was all hooked up he quickly told Mommy and Daddy he wanted to sit at the activity table. There we were joined by Colin's new friend, Hailey, who is two and half years old and was diagnosed with ALL when she was one. Together Colin and Hailey put together beads, played with play doe, and colored. It was great to see Colin having fun with another child since we haven't been able to have play dates. It was also nice for Mommy and Daddy to meet and talk with another family in the same situation.

After Colin's appointment it was family nap time since Maddie was up most of the night before. Once again Mommy and Maddie spent Friday night at the Doctor's office but this time the outcome was a double ear infection. This would explain why she was up the entire night before. After a quick lesson on how to piggy back Tylenol and Motrin Mommy began the process and was able to get a little more sleep that night.

This weekend we had a family outing to Lyman Orchard's where we fed the ducks. The smile on Colin's face was priceless when all the ducks walked over to him. He was trying so hard to throw the bread into the water but instead he mastered throwing it right in front of his feet! On Saturday Ms. Brenda came over to play with the kids and gave Colin his second much needed buzz cut.
Despite the Cowboy's loss, Daddy got a much needed afternoon off when he was joined by Joe and John at a sports bar to watch the playoff game.

Colin is scheduled for the PEG on Tuesday afternoon where he will receive two shots. His next treatment will be Monday the 25th.

We hope everyone has a great week!

Sunday, January 10, 2010

Roll Reversal

Thursday was treatment day and Colin was finally ready to receive his chemo. He received vincristine and methotrexate through IV. This was the first visit where he was very happy and played with stamps, stickers and even made Gigi a picture at the activity table in between flirting with the nurses. His appetite is still unpredictable but his stomach pains seem to be under control. We hope this was just a side effect of the antibiotic he was on. Next treatment is scheduled for Friday as long as his ANC remains above 750.

Maddison has been to the Dr three times in the past week and just about made her first trip to the ER. She has RSV, cough, wheezing, a slight fever and trouble breathing. After a clear chest x-ray and multiple breathing treatments over the past few days the Dr's were ready to send her to the ER on Thursday night. However she responded well to the steroid they gave her in the office and felt comfortable sending her home. A meal from Louise was delicious and just in time since Mommy was at the Dr from 4:00-7:00. Friday the Dr. said she sounded a little better and has put her on a steroid for four days. She was a little more irritable on Friday and just wanted Mommy to hold her. Mommy has been staying with Maddie in her room while Daddy caters to the two year old demands throughout the night.

Saturday and Sunday have been lazy days .. football and trying get rid of the germs :)

Monday, January 4, 2010

Rough Start to 2010

Fifteen minutes before we brought in the new year Colin woke up screaming. He had a low grade fever (100.7) and vomited. For Colin, a temperature above 100.4 is concerning and requires an immediate call to the doctor. Gigi and Papa quickly made there way over with blankets and PJ's in hand. After a couple of conversations with the Dr she decided it would be best for Colin to try and get a good night sleep so we stayed home and piled into Mommy and Daddy's bed for a slumber party. Needless to say it was a long night with minimal sleep.

The next morning Mommy and Daddy took shifts napping and after Colin's nap the Dr decided it was time to bring him into the ER since his temp rose a little and he hadn't eaten anything for two days. The first thing they did was a chest x-ray which came back clear. Next they drew blood and hooked him up to fluids. The final step was a culture. When Colin's blood counts came back Mommy and Daddy were shocked because they rose significantly from Tuesday. His ANC was 1100 which is up from 296. If it had been treatment day Colin would have been able to get treatment. This is good news!! The culture came back clear as well but to be on the safe side they decided to give him a 48 hour antibiotic (ceftraixone). He received the first dose on Friday evening in the ER. We were then given the option to take Colin home or admit him over night. Of course we decided to take him home with the understanding there was a slight possibility we may need to take him back throughout the night. Colin was very irritable that evening and once again we had a slumber party in Mommy and Daddy's room. His temperature stayed the same (hovering at or just below 101) so luckily we didn't need to take him back overnight.

Saturday afternoon we headed back down to the ER for the second dose of the antibiotic (cetraixone). By now, he had developed a little cough and a slight runny nose. Both the nurse and doctor heard some crackling in Colin's lungs so they decided to put him on zithromax which is an antibiotic for pneumonia. The ER only has this antibiotic in a pill form so they crushed it and put it in some water so we could give it to him orally. He didn't like this medicine at all and threw it up immediately. While Mommy and Daddy tried to calm Colin down and get cleaned up we had our first negative experience with as the nurse just stood there watching us. She didn't even lend a hand when we ran out of paper towels. After about five minutes we asked her to come back so we could calm Colin down before the shots of ceftraixone. Upon her arrival she insisted we try the oral medicine again but Mommy and Daddy were not going to do that to Colin again so we asked that a script be written so we could get if filled at a pharmacy where they can add some flavor. Since our pharmacy was closing in an hour we had to quickly get on the horn to find a pharmacy that was still open and had this drug in-stock. Thankful the other drug store in town was open until 10, had the drug and the Dr who was working with Colin responded quickly with our request. Once we had that straightened out two nurses came in to give Colin the shots. He received one in each leg and since it was a slow moving shot he was not happy. He quickly told them he wanted to go home so minutes after we signed the paper work we bolted out of there. Again we had a slumber party in Mommy and Daddy's bed where Colin was very irritable .. we think he got a belly ache from the medicine since it happened both nights.

One more piece to the puzzle ... earlier Saturday morning we were informed that cousin Frankie was diagnosed with shingles. We hope he has a quick recovery and in the meantime Colin's Dr's are keeping an eye on him in case he was exposed but at this point they are not too concerned.

On Sunday we checked in with Colin's doctor as requested. We updated her .. Colin's nose is running a little more, coughing a little more, very whinie and irritable, temp now hovering at or just under 100 and is still not eating. She communicated we're doing all the right things for Colin and he only concern right now is dehydration so she wants us to keep an eye on his intake and outtake. She'd like us to keep them informed daily so the next check was Monday morning.

Colin and Mommy headed down to Yale this morning for a quick evaluation. Colin seems to be having some tummy cramps because he will wake up at night or during his nap in the fetal position screaming. It isn't until we hold him upright when he calms down. The nurse who evaluated him is pretty confident it's just cramps so we'll continue to monitor him until his next scheduled appointment on Thursday.

Signed tired and stressed Mommy and Daddy