Day 765

      Katie had her LAST spinal tap (lumbar puncture) this week!... It didn't exactly go smoothly, but it is over... Our appointment was at 7:30 a.m. and while we were still in the waiting room, Katie told me she wanted a chocolate milk.  (She was fasting for the procedure and couldn't have anything).  She kept saying she wanted a chocolate milk - "Please Mommy, Please!"  And then she told me she was having a low blood sugar.  I asked Scott, "Do you think she is really having a low blood sugar, or do you think she is just saying that because she wants a chocolate milk?"  - We weren't sure because she wasn't symptomatic (yet) - but Katie told me a couple more times that her blood sugar was low.  Thankfully Dr. Dana walked through the waiting room right then.  She wasn't working in clinic that day, so our appointment was with another doctor, however she stopped to talk to us.  She asked how we were doing...I told her I thought Katie might be having a low blood sugar, but we weren't sure...we talked a little more about some other things...then Katie told me again she was having a low blood sugar.  I told Dr. Dana I thought Katie's sugar must be low.  Dr. Dana immediately took us in and told the nurse and doctor to start an IV stat!  As one nurse was getting the IV ready, another nurse took Katie's blood sugar - and it was low!  Katie was right, she knows her body and she knows when her blood sugar is low.  Katie was extremely upset and very symptomatic at this point, and it took them awhile to get the IV in.  It was very stressful and upsetting!  (As always) I felt so helpless!   Katie lay in my arms screaming, crying, and pleading "Please Mommy Please! (chocolate milk)... No Mommy No! (poke and IV)..."  She was so upset and I seriously thought her blood sugar was going to drop so low that she was going to go unconscious.  It was terrible!  (I was so glad Scott was there with us).  They gave Katie 450 cc's of Dextrose (which they said was a lot) - and then they disconnected her from the IV and sent us over to the hospital for Katie's procedure.  I told them the last time they let us walk over with the IV, and we kept Katie on the IV the whole time.  Again, they told me, Katie had gotten a lot of the Dextrose and they were sure she wouldn't need anymore.  - Well, they were wrong.
     Katie's procedure was supposed to start at 9:30, but we were still waiting at 10:30.  I don't know why - Katie was supposed to be first because of her hypoglycemia.  I just know that Katie started telling me she was "so hungry and needed to eat... Please Mommy Please!"  And then she started acting upset and lethargic.  I told Scott, "I think her blood sugar is dropping again."  I asked Katie if her blood sugar was low and she told me it was.  We got the nurse - and they tested her - and her sugar was low - again.  So, it was another rush to get the IV hooked up.  It was upsetting and stressful!  (If this wasn't our last time, I would have voiced my concerns and frustrations about how things went - but doing so at that point wouldn't have made a difference one way or the other - what was done was done).  The nurses were amazed that Katie can tell us when her blood sugar is low.
     After the procedure they let us go back and sit with Katie while she was waking up.  I made the mistake of sending Scott back to the clinic (to get some things they had forgotten to give us).  In all the times we have done this (which has been a lot), we have never had a problem like this with Katie waking up.  But right after Scott left, Katie started coughing, she was still under the anesthesia, and she couldn't clear her throat.  She kept coughing and coughing, but she wasn't able to inhale.  I called the nurse over and told her, "I don't think she can breathe....She can't breathe!"  The nurse took Katie's oxygen mask off and turned on a long suction tube, and started sucking out Katie's throat.  When she stopped, Katie started coughing again, and it was obvious Katie was still struggling to breathe.  I told the nurse, "She still can't breath... She can't breathe!"  I felt the panic rising in me.  (How I wished Scott was there!)  The nurse suctioned out Katie's throat again...and then all was well...(except for my emotions and my heart!)  We also experienced something else that we hadn't before, several of the other children waking up had difficulties, and there was a lot of crying and moaning going on.  Overall, it was a very stressful day.
     Later that night, Scott told me, "In some respects this is harder on us, than it is on her."  - In some respects it is -  But boy, she has it the hardest!  The doctor increased Katie's steroids for this month (and next) - and the effects are very evident.  It is hard.  I told Scott, "I know this was her last spinal, and she only has one more chemo to go through, but that doesn't make this any less difficult."   However, it does intensify my gratitude that we are almost through. 
     As we were waiting for Katie to wake up from her procedure, we met a mom who has a 4 year old son, who was diagnosed with the same type of Leukemia as Katie.  However, he doesn't have the right number of chromosomes and so his prognosis of survival is only 50-70% (whereas Katie's is 85-90%).  It is hard to fathom how something so small can make such a difference.  It almost makes me feel guilty in some ways.  There are so many children and parents out there who are not as fortunate as we are and my heart aches for them.  Katie has the right number of chromosomes.  How blessed we are!  How blessed we have been!  We are very hopeful and have every reason to believe that Katie will recover from this and live a full life.  We had some real scares along the way, however we are out of the woods and are moving into the light.  Almost as symbolism of this, Katie's hair that had started falling out a few months ago, has started to grow back in.  She has little hairs covering her head and filling in all the bare spots.  She (and we) are progressing and moving forward.  Katie is going to be fine and we are GLAD!