Lucas is 3!

Even though he still claims he is mommy's little baby from time to time, he is definitely growing up.  I caught him counting the number of his fingers with Bandaid for each hand today.

Today has been a long day.  Maybe because we had tried hard to keep his blood sugar steady for the past 2 days, either with food or with dextrous IV, this morning of fasting was hard for him.   At 12 noon Lucas had his 8th spinal tap -- and I scored my first win to go into the operation room with him and stayed till the general anesthesia started to work.  He remembered it afterwards and asked me why I wore doctor clothes and hat.  It wasn't fun to see what anesthesia does to your kid.  But at least he didn't cry hysterically before the anesthesia as I kept telling him that if he cried they would not let me stay with him.

He is very energetic today, had a big late lunch and didn't need a nap.   He ate half the meal size ham sandwich for dinner.  Then we got a surprise.  When nurses switch shifts from 7 to 7:30, a lot of them showed up to sing Happy Birthday with a small cake.  Hospital policy says no candles but Lucas was happy with the cake.  Just to negate what I said earlier that he didn't like sweet food, he ate 1/4 of the cake (minus the icing).

We didn't start high dose methotrexate until 9pm.  This is a complicated chemo and I read the protocol closely.   Only to find that the hospital doesn't follow the protocol 100%. They don't check for urine specific gravity before hand -- just to give him bicarbonate for 4 hours.  Instead of adjusting bicarbonate to make his urine pH stay in 7 and 8, as specified by protocol, they only care that the pH is above 7, and his last number was 9.  They won't check for 36 hour MTX levels.  They didn't adhere IT MTX need to happen within +/- 6 hours of IV MTX either.  I guess it's like most things in life.  Rules are wrote to be broken.  The next few nights will be rough as the IV amount he is getting means one diaper every hour.  They check MTX levels till 72 hour so the earliest we can get home is Saturday.  Things were made even more complicated as Lucas need to stop IV completely to have the vancomysin lock therapy every 24 hours while the chemo needs to flow constant for 24 hours while the IV fluids+bicarbonate needs flow constant for 48 hours.  They would have to get another IV in his arm so vancomysin lock could be continued (though chemo can't go through veins so there will be 32 hours in-between today's dose and tomorrow's dose).   Just hope the chemo will clear quickly for Lucas and there will be no more complications.

Lucas had his iconic laugh "ha-ha-ha" when the crowd of nurses walked in.  It was a little overwhelming for me too as I didn't register that his favorite outpatient chemo clinic nurse showed up as well until they left.  Some of these caregivers (mostly nurses and child life workers, rarely doctors) are really like angels.  They are dedicated and skilled and seem to really care about the kids. Their calmness and optimism influence me in a very positive way.