A Kick in the Pants

When I glanced out the window of the Ronald House at 6:45 AM and saw Mr. Grant already waiting out in his van for us (35 minutes early), I couldn’t believe his kindness. I panicked, then quickly hopped in the shower while mom got Christi ready and soon we were off to CHOP. (Well…….after she opened a sweet package waiting for her at the Ronald House! I somehow knew Tim would understand!) Daily I’m reminded of His goodness and His work of Angels on earth doing good things for others. We have been blessed beyond belief. Thank you to all of our “unseen” helpers getting us through each day of this journey! Thank you for loving our family!

The results of this morning’s CT scan were not at all what we had hoped and prayed for. Although not at all unexpected, right now I feel like it’s “kick me when I’m down,” (You see earlier today I received her blood counts and saw that her LDH is higher than it was last week. Disheartening to say the very least.) Regarding today’s CT scan:

“At least seven new lesions are present within the liver. Six of these are identified in the right lobe, with one lesion in the lateral segment of the left lob. These are consistent with metastases neuroblastoma.” (Dear God, Why? Why? Why?)

Now I remind myself that today’s CT scan was compared to her last CT scan (which was clean) back in December of 2005. Dr. Maris wasn’t certain why “the liver” didn’t light up on her MIBG scan of February 1st; however, he did remind me that she had so much disease then that perhaps it just didn’t stick out with everything else lighting up back then. He said that everything else resolved so it’d be odd if that wasn’t the case with the liver too. (Well, I’ve been around NBIV relapsed/refractory disease too long. I KNOW the liver doesn’t always respond the way the rest of the body does to treatment and I know that once it’s spread to your liver, you’re typically done soon. I’m not trying to sound negative here; however, I have lived this disease 24/7 for the past 3 ½ years and quite frankly I’m downright scared and fearful.) Additionally, he told me that she had a 70-80% response while last week with Aunt Marty he said 90%. Ugh! On a positive note, I asked him if he felt that her disease would be further reduced by doing a second round of TVD and he said that he fully expected it to. (We pray he’s right.)

Finally to explain my fear, for the past 3-4 days I’ve noticed Christi’s been arching her head back and trying to snap or crack her neck. When I asked her why back at home she told me it just felt like it needed to be cracked and then it felt better. While observing her today she did it a few times each hour so I felt I’d better show our sweet NP Pat Brophy. Of course she wasn’t thrilled as her face indicated to me, and she said exactly what I thought, “It doesn’t change anything we’re going to start today.” Late this afternoon her chemo finally started over in the day hospital and then we were moved into her room (3 South, room 24). She will be here until she's discharged on Monday to go back to the Ronald House for most likely two additional weeks.

This is the nicest room we’ve ever stayed in. It’s huge with hardwood floors, a computer with Internet access and purple walls. It’s great the way CHOP tries to camouflage this place into a resort when really it’s a brutal battlefield where pediatrics and professionals brave the most vicious and conniving of all enemies – cancer.

Today, during the many hours spent waiting for appointments and her chemo to begin, Mom and I read “The Secret Garden” (Thanks, Werling Cheerleaders…..and Tom, hee hee) to Christi and to a fellow 4th grade cancer fighter she met here in January. Mom located the DVD of it here at the hospital and we had planned to have “Movie Night” up here on the 3South tonight, but the treatment got the best of sweet Tara and she crashed hours ago…..hopefully tomorrow before she heads for home. Christi takes great delight in having friends here to play with and girls her age are very hard to come by. On the plane she told me, “This time if there’s a kid my age in the playroom I’m going to go right up to them and ask them to play.” (Of course, she’s too shy to do that, but to see Tara in the waiting room today was great since they’d met before.)



Tonight brought great joy as we hooked up the new web cams (Thanks, sweet Arnolds!!) and were able to see and have a lengthy (live) chat and viewing with Shayne and Shayla back home thanks to free Internet here at the hospital-and to sweet and generous friends back home. When Shayla held up Buckeye and then Buttercup so Christi could see her cats, I cried. (And when sweet Buckeye ran across the piano keys, Christi bent over laughing soooooooooooooo hard!) Praise God for technology-bringing our family together in the midst of this battle and for sweet Angels on earth for getting us through each day.