Wednesday, October 26, 2011

Low Counts

Back to clinic today.  Colin received his monthly IV chemo and another dose of antibiotics. The rash seems to be going away a little each day. His counts are now low (ANC 347) so we're still home-bound. Due to the low counts he will not receive his oral chemo for at least a week. An IGG test was also taken. If it comes back low he will be given a boost via transfusion to help his body combat the viral infection.  We should know the results in a couple of days. Colin did start the steroid today which should help improve his counts however should he spike a fever while his counts are low he will be admitted.

Four days at Yale this week ... let's hope we can stop the pattern!!

Tuesday, October 25, 2011

Another ER Visit

Back to the ER tonight due to 101.7 fever. Colin was a trooper and kept busy with his new Ipad while we waited for blood counts and antibiotics. As we hoped Colin's counts came back high enough (ANC 700) to head home instead of the anticipated admission. Back tomorrow for another dose of antibiotics and chemo.

He's comfy in his bed sound asleep but Mommy and Daddy can't help but worry. Will update again tomorrow.

Monday, October 24, 2011

Believe in Tomorrow & Hand Mouth & Foot

Last week we had the opportunity to enjoy a few days at Believe in Tomorrow in Maryland which is an organization that offers families with life threatening illnesses a much needed break from the daily routines of medicine. They have three housing facilities in Maryland and we fortunate to stay at the house by the sea in Ocean City. We enjoyed the off season by playing miniature golf, viewing the wild horses, boardwalk strolls, a tour of the life guard museum and some fantastic meals. Unfortunately, both kids were under the weather and Maddie came down with a low grade fever and a rash followed by mouth sores the second day we were there. Within a day, Colin was starting to give us signs of not feeling well so on Friday morning after a slow start and some convincing to get him out of bed we packed up and headed home.

Maddie rebounded quickly and her rash subsided by Friday evening. By Sunday Colin developed the rash, mouth sores and a fever so we made our way down to the ER early in the evening where they took his blood counts and gave him some antibiotics and fluids. It was a record ER visit, we were home by 11:00. Could it be due to our long time nurse from the 7th floor who took care of Colin? The good news is .. his ANC was 700 so we were able to come home.

Today Colin spent most of the day sleeping and watching movies. We returned to Yale for the second dose of antibiotics and some fluids which seemed to perk him up a little. The rash is still all over his hands, arms, feet and legs but the mouth sores have subsided. The Doctor's believe both kids have hand mouth and foot disease so we're home-bound until Colin's next visit which is Wednesday.

Wednesday, October 12, 2011

Counts Are Back Up & Two Year Post Diagnosis

Colin went for his routine blood check today and we're very happy to report his counts have recovered. His ANC is now 1100 which is perfect!

In our last post we neglected to recognize Colin's two year post diagnosis date which was Oct 2nd. The weekend was beautiful but the memory and reflections were gloomy. Had you asked us two years ago if we thought we'd be where we are today we would have never imagined. Colin has never once let us down along this journey and we've learned so much about ourselves and about our family. We've learned to function with few or no hours of sleep and truly enjoy the big things in life while trying not to sweat the small stuff. Most importantly we've learned just how precious life really is.

The fact of the matter is we would not be where we are today without the support behind us. And for that, we thank you.... Mike, Heather, Colin and Maddie. xoxoxoox

Tuesday, October 4, 2011

LP and counts are on the low end

Apologizes for the random post last night ... we started an update through Colin's new Ipad but as you can imagine we're still learning how it works.  He received an Ipad through a program called Ipads for cancer, sponsored through Journey 4 a Cure.  He's only had it for 24 hours and already knows how to navigate through many of the games.  We're very excited for him and love to see his beaming smile whenever he talks about his "toy"! We're also happy that he'll be able to stay connected at school for days that he may miss.   Wow, what would we do without technology and all the great organizations out there.   You've made our 4 year old very happy!  Pictures will follow :)

On the medical side, Colin had a spinal tap last week and unfortunately it was a long day.  Colin typically receives a conscious sedation for the procedure however he did not cooperate this time and resisted with strength and anger.  After two attempts the procedure was called off.  We were presented with two options 1)come back next week and we'll try again or 2)have the procedure in the OR with full sedation.  We opted for the second option.      

Holding your child as they are given sedation and feeling him go limp is a helpless feeling.  We spent most of the day in the OR. The procedure itself was fairly quick, but Colin had some difficulty breathing and required a breathing tube during the procedure and oxygen as he was recovering. We let him sleep and wake up on his own later in the day. He awoke happy but starving! He quickly went through two popsicles then moved on to graham crackers and continued to eat up until close to bedtime! 

His counts were low, coming in at 500. Because of this, as well as the ordeal on Wednesday, Dr Joe asked that he take the rest of the week off from school so we had some lazy days at home.  Thank you for all the love and support!