Wednesday, June 6, 2012


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.

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