The countdown to going home is officially ON. Yesterday we received a high security med delivery of Neupogen, a drug to be administered at home to help Pablo keep his blood counts up. We just recently heard about this part of the process. Insurance covers the drug (thank goodness, it's $7,000 a shot) and a one time home care nurse to come over and teach us how to administer it. Most parents give the shots to their kids, but I just can't imagine that happening at our home. Jeff faints at the sight of a needle... seriously, I always thought he was joking, but I can tell you from first hand experience... the dude goes down and needs smelling salts! And, although I don't faint, the idea of giving Pablo an injection is so overwheming emotionally, I start to feel anxious just thinking about it. So, I called Penelope, one of our lovely nurses from the out-patient clinic to see if she would be interested and willing to help us out. We met Penelope on our first tour of the clinic back when Pablo was diagnosed. In the not-so-strange way that things happen, our friends Justin and Corinne had told us about their friend Penelope who is a parent at their daughter's preschool. Then upon meeting Penelope we discovered a long long history of mutual friends and that we are actually neighbors. I could go on and on, but the point is - we are sorted on home injections thanks to her! She will be coming over every 3 weeks to give Pablo his shot.
Dr. M stopped by to see us this morning and gave Pablo the go-ahead to start on the new 24 week/6month treatment plan. It's a lot of information, a lot of drugs, a lot of nervous energy jumping around inside of me...
Today Pablo gets Vincristine, Doxorubicin and Cyclophosphamide (Cytoxan). We have had the V and D with our last round of chemo (remember RED DEVIL?), so we know how Pablo handles those, but the Cytoxan is a great big unknown with all kinds of crazy new potential side effects, including the most common, bladder bleeding. UGH... in order to prevent that it is given in combination with another drug, Mesna, and it is administered over the course of an hour. Then we get 2 more doses of Mesna every 4 hours. This is why Pablo is receiving chemo in-patient. He needs to be monitered throughout the night.
As if that's not enough, we actually start all of this doping with a Benadryl/Reglan combo shot to be followed up every 6 hours as needed for nausea and vomitting, and a syringe full of Zofran, to be continued every 6 hours for 8 more doses... and then we go HOME...
That's right, we are getting kicked to the curb on Friday. Some of the hospital staff thought we could go tomorrow, but Dr. M has the final word and wants us to stay until Friday... which works for me because I feel safer here!
As for today, our 4W nurse took Pablo's fluids off this morning because he's eating and drinking, so we went on a "freedom run" (more like a nice stroll) around the hospital. Pablo's new favorite spot is the gift shop. Seriously, he loves it there. Right now, he's out with Polly and a bowl of berries. They are headed to the front courtyard for a book and a snack.
We are all good today and will keep you posted on how Pablo tolerates his chemo this afternoon.
love,
Jo Ann
2 comments:
I started giving my mother allergy shots when I was twelve (twice a week. A nurse trained me....and I was on my own. Practice with water in a syringe on on orange. The first couple times I was nervous....but then it was a breeze. I learned to crack a joke when the needle went in and this relaxed my mom.
Of course working on a five year old is more difficult than a mother. I trained my dad when I went off to college.
Good luck,
Jenefer
Thinking of all of you today. Love you.
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