Thursday, July 21, 2011

Rough start

Upon returning home after seven hours in GR, I stood in the kitchen and was so relieved to be home that the tears just started to flow.

Everyone in the family was dreading this day.  Last night we all started acting out in our own ways--impatience, bickering, frustration, etc.  In the moment I can recognize why we are acting the way we are, but I don't have the reserves to be patient with it.  That in itself is frustrating.

Without going into too many details that don't need to be shared in this public space, we had a rough experience with Chloe's first radiation treatment this morning.  Put simply, Christa, Chloe and I were all very anxious going in to the morning and we felt very little was done to make us as parents of a young child reassured that things would be okay.  When Chloe was sedated and in treatment, we spoke to a nurse and (politely) exploded with our frustrations.  After speaking with a manager by phone this afternoon, we have been assured that our concerns will have been taken care of in time for Chloe's next treatment tomorrow morning.  Yet the act of having to vocalize our concerns zapped what little energy we had to begin with.

After Chloe woke up from her short "sleep" for her radiation treatment, we were brought over to the clinic at DeVos.  It was nice to be in familiar surroundings again, even if the routines and people in the clinic were new to us.  Evidently word had traveled fast that we had some issues in the morning as Chloe's assigned nurse in clinic told us that we would have time to talk about our concerns and make sure that our needs were being met.

The afternoon in clinic went well.  Chloe had her blood drawn to check her "counts" (which still look great at this point), we talked about how she is feeling (great) and any side effects (practically none), and then she had her second chemo treatment which in the form of a "push" from a syringe into her port that takes about a minute.  We also had a chance to talk with the hospital social worker for a while and air our concerns and discuss a few questions that had arisen over the last week.  Basically, there was a lot of waiting.  We tried to keep Chloe busy -- eating the box lunch the hospital provides for the kids in clinic, playing games on the iPad, coloring, etc., but she was very ready to head home by the time we were allowed to go.

Yet, through all of this tough stuff we are still feeling so much love and support surrounding us.  We returned home to find our driveway and sidewalks decorated with messages of encouragement and love, the back porch containing packages of muffins, sweet bread, brownies, and a hand knit hat, and our mailbox filled with gift certificates for massages, a check to take the family out, and bunch of cards from near and far.  Plus, our dads had worked together to install a keyless entry on our garage so the kids can get in and out as needed.  And a meal to nourish body and soul was delivered by some dear friends. 

Thank you doesn't seem to be enough, but still I'll say it, thank you!

2 comments:

Anna said...

Think of you often, thanks for keeping a blog so we can follow Chloe's progress.

Anna

Kathy said...

I just received a link to your blog from a friend of ours. My heart breaks for all of you. My 4 year old son just finished his last chemo treatment for his Stage 3, FH Wilm's. Gerrit was diagnosed 1/11/11. I would love to talk if you ever have any questions. I know each kid has their own journey through their treatment, but I am so happy to report that Gerrit is just great! It's been a long 7 months for us. This is all too familiar for us. Please contact either myself or my husband Gary. We live in Holland.

Keep the FAITH!

Kathy and Gary Corell

kcorell@zch.org
gcorell@charter.net

Check out Gerrit's website at www.colespages.org/gerritcorell