Tuesday, November 27, 2012

New Port

 Long day but good day. Colin did great through the port replacement surgery, lumbar puncture and the chemo infusion later in the day. Counts are on the high side but no change in meds at this point.  We were surprised when he asked if I remembered our promise to stop at Toys-R-Us when were getting ready to go home. Needless to say, we are continuously amazed at a child's resilience and we were happy to make a quick pit stop at Toys-R-Us on the way home.

Maddie spent the day with Papa as she has a cold and fever last night so no school today! Of course, by the time we got home, she was back to her normal happy self, a cough but fever free. Thanks Papa!

Take out tonight, chinese was the winner. Papa stayed and worked on the lego's that Colin picked out at Toy-R-Us.  A good ending to a long day. We are now all tucked in safe and sound. 

Thank you for all your messages, texts and love!

Wednesday, November 21, 2012

Port Issues & Surgery Next Week

It's been a while! 

Two weeks ago Colin had his scheduled blood check and his port was very sleepy, we could not get a blood return.  The nurses tried TPA (which is a medicine to remove any clots) and unfortunately it still did not want to cooperate.  Colin was a trooper because the increase in heparin caused a metallic taste in his mouth.  We learned quickly that constant drinking helps so while Mommy held the cup to Colin's mouth, the child life therapist, with the assistance of Maddie, had the next one waiting.  After a few more attempts, a few tears and nearly trying every position but standing on our head we still had no luck.  We were then instructed to come back the next morning so they could do a few tests.  It was at this point it became apparent that we were going to end this chapter with a bang because just prior the nurse gave us Colin's end of treatment date which includes three more IV treatments.

So, bright and early the next morning the trek down to Yale began.  Colin and Daddy were there by 8:30 and were ready for a long day. The first attempt for a blood test did not work so a dye test and x-ray was performed which came back clear. Decided against surgery at that point and another attempt using  TPA and after a few more attempts the nurse was able to squeeze out just enough for a blood test. We were hoping the TPA would continue to work but...

Fast forward two weeks to today ...

The port continued to not cooperate with no blood return even after a dose of TPA.  After many attempts, it was decided Colin will have surgery next week to replace his line.  The line must be replaced in order for him to receive his IV treatment.  It's possible he's grown out of his line and we are very fortunate we got this far with his original port.  Because he was not able to have his spinal tap today he will receive that next week immediately following his port surgery.  His doctor will perform the spinal tap in the OR while he is under anesthesia.

In addition, Colin's counts remain on the high side so we will increase his medicine (methorexide) to 6.5 pills once a week. Daily dose of chemo (6mp) will remain the same.  We hold off on his steroids until next week.

While this is a minor setback, we are reminded we have so much to be thankful for so we wanted to take a moment to say thank you for supporting us through this journey ... we could not have done it without each and every one of you.  We wish you and your family's a Happy Thanksgiving!