Maintenance Day 85

Happy New Year! Its time for a post! Life has been busy with the kids settling into regular routines of school, music, hockey, home work and having friends over so we have been busy.

We have made it through the first 3 month phase of Maintenance and started another round. Essentially Nathan's treatment plan is  planned for a 3 month period and then we repeat it over and over again.  Nathan is doing well. His hair is growing back nicely although I can't quite decipher the color.  He was our blond boy before he got sick and now his hair is not sure if it wants to be dark or light.  Guess maybe the summer sun will help it out when we get there.

After not being at the clinic for 4 weeks, both Nathan and I were apprehensive about returning. Today was the lumbar puncture with Intrathecal Methotrexate.  Nathan wasn't happy about not being able to eat or drink but was the only one scheduled for today so was in by 9:15am and he did very well.  The good news was that procedure went well.  The disappointing news was that the chemotherapy pills Nathan takes daily had wiped out his plateletes and his platelete levels were at 29, with neutrophils of only .71.  With the plateletes being so low, Dr Ali put orders in for a platelete transfusion except there wasn't any at the hospital. So to make the most of a long day, Nathan and I picked Arron up for lunch which was a nice outing.  We returned shortly after 1pm and by 1:45pm the plateletes had arrived from another location.  All went well and Nathan received them well.  We were home by 3:30pm, in time for me to switch boys and take Carter to his hockey game.  It was a great game! Carter had some great plays and scored his second goal of the year (his first was on Friday and Arron saw that one but I didn't) so was great to see.  They lost 3 to 2 so was a very close game.

Since Nathan's counts were so low, all chemotherapy pills are held for the week.  He is one steroids for another 5 days starting today. Lovely little pills those are.  Arron and I know what to expect - hungry, emotional boy at the start followed by anxious, not sleeping, over stimulated boy who one minute will be smiling and happy and then next is crying.  So each Saturday following the 5 days of steroids, Arron and I are glad the last pill has been administered and wait for the come down.  We will return to the clinic Friday morning for blood work and again on Tuesday just to see where he is at. At least these are in and out visits with no wait for blood work or pharmacy.  With plateletes being low and the inability to clot, one would think we would seeing bruising with Nathan but we never do. The symptoms that we can look back now on and see are increased tiredness (although if you ask him if he is tired the answer is always no !), loose stomach and this time around on Sat we noticed Nathan had a bruise on his tongue, right in the middle.  That was an odd one.

Althought the weather was a balmy -19 Arron, Justin, Carter and his friend headed out to play hockey on the rink tonight. Nathan did not participate for obvious reasons so worked on extra phonic sheets with me instead. He has improved greatly with his reading and identification of words.  His attitude towards the school work has improved as well which has been great to see.

With the kids break approaching we aren't sure what we will be doing. Thought we would know today but guess Friday will be a better indicator both for weather and for blood work.