Waiting to wait: Posted by Megan

Marc left me with the computer tonight, so I thought I would post on his blog. I appreciate everyone for all their support. We really are lucky to have such wonderful friends and family supporting us through this horrible and completely shitty (for a lack of a better word-it is really late and please read the following) time in our lives.

It was a crazy day. We arrived at 545, and then waited, then we waited more, but in a different room, then we waited in another room. She then had her surgery. It went well. She woke up MAD. The nurses were great. Then we waited. We made it to oncology at 330ish. Then we waited. She finally fell asleep on Marc for 1.5 hours. Then we waited. They finally started the cyclosporine at 8 30/900 ish. This isn't the chemo. Finally she fell back asleep in the crib (no small feat). I was interrupted writing this. They just administered her first round of chemo. It is about 1100. Before doing so they needed to take some blood from a pin prick in the finger. That was heart wrenching to watch. It wasn't just a pricks worth of blood they needed to take, it was close to 2mls. That is a lot of blood from one little finger. Then they administered the chemo, vincristine (goes directly into the line via a syringe) and etoposide. She is being monitored for low blood pressure every 15 minutes for an hour beacause of the etopside. Her b/p last reading was 113/66 and she is asleep from screaming herself to exhaustion. I almost passed out and threw up all at the same time. I know this isn't hurting her, but I can't help but feel helpless in this situation. I can't protect her from this. That really sucks. So here I am in a chair that I can't figure out to recline without making a super loud velcro noise waiting for her next administration of chemo drugs, carboplatin, then more cyclosporine and then we can go home. (I dream of home now like some may dream of chocolate cake with homemade ice-cream, or sweet strawberry shortcake made from handpicked organic strawberries on a hot day.) I hope she sleeps through most of this. We have less than 45 minutes till the next round starts.

On the brighter side, since this is her birthday, the nurses set up a banner and some gifts for her in her room. She likes them very much and is greatful for something to do while stuck here. Next time, Mom and Dad will be more prepared for 2 days confined to a boring room. The nurses and doctors in oncology are great too.


Eileen said...

I am so very proud of all three of you. Megan and Marc, you are such wonderful role models of love and support for your beautiful daughter. You are constantly in my thouthes and prayers. I can't wait to hug you in person.

EnthyAlias said...

Meg, this is beautifully written - especially considering your were in the midst of the experience itself. You amaze me with your strength - to even put all of this into words is impressive. Brought tears to my eyes. I'm in awe.

I'm so sorry your little girl had to celebrate her first birthday this way, but soon enough she will be well and she can celebrate so many more birthdays without even remembering this one.

I think about you all, all of the time.

Kristen "Mama" Seas