Two Trials

During the maintenance phase of Maddie’s treatment, the blood draws and IV and intrathecal chemo are  now less frequent, which we appreciate.   We are now faced, however, with making this routine manageable for Maddie.  Before her blood draw on Tuesday, she said, “I just don’t want to do this anymore.”  Neither Brad nor I blame her, especially, when in her mind, she isn’t “sick”.  She has been feeling great lately, and even though her blood counts are still quite low, she feels very few effects of the daily oral meds and monthly chemo treatments.  When have to become more creative when treatment time rolls around each month.  So, this week before we accessed her port for the blood draw and chemo, we asked her if it would be easier if we first “accessed” her teddy bear’s “port”.  She thought that would be cool; she could help Teddy through the process and help him “be brave”.  She got to put the EMLA cream over Teddy’s port and then she “put his tubey in”.  Then, she got to draw his blood.  It seemed to make the process of accessing her port as bit easier.  On Wednesday, she brought Teddy with her to clinic.  They both had “their tubey in”.  We joked that while she was going to get her chemo, called vincristine, he would get his chemo, which we called vincristabear.  As we got ready to leave for Dartmouth-Hitchcock, she grabbed Teddy and eschewed her little green Little Giraffe blanket, which she calls “little mankie”.  I was pretty blown away by the fact that she left little mankie.  She has brought little mankie to every clinic appointment and treatment since she was in the hospital for the first time in Novemeber.  She felt like she didn’t need it; Teddy was a good replacement.  Maybe the treatments are less scary for her now, and after all Teddy did need to get his vincristabear, so he couldn’t stay at home.

Our trip to Dartmouth was smooth.  Maddie was able to tell her doctor all about how she is doing and how she’s feeling.  Brad and I only piped in a few comments.  I’m still impressed by how she is able to take ownership over her illness and her treatment.  While only 4 years old, she knows a lot about managing her condition.  After meeting with her doctor, she played for a while in the playroom at the clinic making all sorts of Play-doh figures.  Then, she received her vincristine and Teddy his vincristabear.  After we de-accessed her port, she de-accessed Teddy’s.  A successful day for Maddie and Teddy; both proved to be brave little troopers!

The other day, we were reading a Stuart Little chapter book and the last paragraph of the last chapter really struck home:

“Staurt rose from the ditch, climbed into his car, and started up the road that led toward the north.  The sun was just coming up over the hills on his right.  As he peered ahead into the great land that stretched before him, the way seemed long.  But the sky was bright, and he somehow felt he was headed in the right direction.”

While our road still seems long, I feel we, too, are headed in the right direction. I feel fortunate every day that even though Maddie is still “sick”, she doesn’t consider herself “sick”.  I am so greatful every day for her health.  To see her dancing, giggling, running around, and full of energy makes me smile and appreciate where we are and how far we have come.  Those days when she felt so poorly and was so “sick” are still so fresh in my mind.  They are a constant reminder to me of how quickly life can change and just how fragile each of us can be.  I can remember vividly thinking when she was so sick that I would never take for granted those simple pleasures in life, like seeing her play at the playground or hearing the innocence of a child’s laughter.  There were many dark days, but now, even among the blood draws and chemo, we feel like our path is much brighter.