Quick Update

4/14/2010 Wednesday

Hey Everyone,
It's been a while and I have been intending to update each night...here I am finally.

Overall I am SO pleased to say that we have been doing well. We (meaning I) are continuing to give William shots of the G-CSF medicine every other day. This is to keep his neutrophil count at a nicer level so that he has more energy, is happier, and feels more like himself. (It also protects him a little more so that if he gets an infection, his body may be ready to fight it).

During my Spring Break (the last week in March), William got to stay home with me. We had lots of fun activities going on, including a trip to the Mall of America with his buddy Enrique (and his mommy Renilda) to see the Easter Bunny at Toddler Tuesday and another visit to the MN Zoo with cousins Jeanne, Brienna, Chloe, and Dalila.

He was just not himself that week, he had a cold and was tired and moody all week. He threw up a few times, which we now think may have been a gag reflex from coughing too hard. I was a neurotic mess all that week worrying about what could be wrong with him. I was also a bit gun shy to take him places because he threw up all over himself in his carseat while we were running errands on our first day of break. His ANC (Absolute Neutrophil Count) was only 50 that week when we stopped in at the Hem/Onc clinic. This was a SHOCK since we had been giving him the shots of G-CSF for a while already. Later the Hematologist said that it was quite possible it was so low because he might have been fighting a tough cold virus or something. (Fighting a virus will lower your white cells).

The good thing is that last week he started to bounce back. He was happy, but clingy, on Easter weekend and his energy slowly climbed back up. He saw the Hematologist and she thought things looked good. His ANC last week was 5,000! (Remember the bottom of the normal range is 1500 so this was a nice #!) He was a bit of a turd last week, waking up around 4:00 each weekday morning when my alarm for school goes off at 5:30. Guess he was really struggling to get off of Spring Break mode!

This week he has been a happy, smiley, boy with lots of energy. He can now stand up in his Pack-n-play and crib and he "cruises" around a lot (meaning he walks holding on to furniture or people). He still does not crawl on his knees, but is extremely skilled at scooting around on his bottom. He goes all around the house and it is pretty funny to see him try and scoot in the grass. I have noticed him pushing up on his hands and feet into the yoga pose called "Downward Facing Dog" so I think he really wants to learn to stand on his own. He has also gotten up on his knees and moved a few times before rapidly switching to his "scoot on the boot," so maybe he will learn to crawl traditionally some day. Oh and his ANC this Monday was 9,300!!!

During my Spring Break I got to visit with my friend Jen, a soon to be graduate of the U of M School of Pharmacy. For fun she looked up the cost of some of the drugs William has taken through all of his illnesses. She was telling me that the G-CSF he gets is VERY expensive. We get the G-CSF in these tiny glass vials, about the size of your pointer fingertip. We draw up 10 units of that vial which I would guess is not even 1/4 of it. Then we have to throw away the rest because they are single-use vials. We are now receiving these doses from the National Neutrophil Registry, because William is part of their studies so we get them for free. Jen revealed that EACH vial of the G-CSF he gets is around $240.00!!! She said that vials of the next level of concentration are around $1200.00! Thank you God first of all for health insurance, and second we now know that all those weeks of pokes 3X a week so that William could be in the Registry have been WELL worth it!

I hope the beautiful Spring weather is lifting your spirits and enriching your daily lives. We are enjoying walks and even tried our first bike ride with William in his Burley bike trailer. (He screamed bloody murder the whole way and kept pushing his helmet over his face, so guess who's going to be wearing a helmet during play time to get used to it?!?)

Thanks again to all of you who are keeping tabs on us in your own special ways. It won't be long and we'll be done with school and ready to rock the summer! Let us know if you're free!

Much love,
~The Moeller's