Thomas Two

Boy, you guys are harsh! (smile) Soooooooooo sorry for the silence regarding updates on my part– you’ve certainly not been silent with your emails and phone calls! I’ve been preoccupied with other matters (not related to Christi’s health). Before I leave that topic let me please share my gratitude for your unbelievable outpouring of love, support and offers of help this week. Enough for now about our “distraction” and on to the important task at hand – saving Christi’s life!

On Tuesday when Christi sadly asked for the umpteeth time, “Can we please just go home for a few days?” I explained that last minute flights were typically over $500 each ticket and we really shouldn’t do that any more, but not just because of the money, but mainly due to having an ANC of zero. She begged, “Mom, I’ll even fly in a teeny tiny plane; I won’t get car sick this time.” So, assuming her counts would be up and Dr. Maris would agree it was safe, I called on Tuesday and lined up a pilot to fly us into the Tiffin airport on Wednesday night so that we’d be back at school on Thursday morning.

So much for high hopes, her counts came back much to my surprise that she needed a transfusion and that her ANC was still zero, X$%*&!!!! I knew I had to fess up. I explained to Dr. Maris that I asked a pilot to fly in and to take us home in a few hours to and he told me bluntly that it would be life-threatening for Christi to be away from the hospital during these next few days. He said she looks fine now, but in one hour it all can change and fever can set in, she may need blood; it’s too dangerous. He told me how this is hard for any parent, but even more so when you’re away from the other half of your family and 500 miles from home and coping with the realities that we are enduring. He reminded me that most hospitals would have her inpatient with heavy antibodiotics with these dangerously low counts, mouth sores and intermittent pain, and that adult oncologist wouldn’t believe that she were even going to be alive much longer with her counts, but he understood and could empathize with how much we want to be home and that we are very realistic and the time for Christi to enjoy life is now.

Regardless of his compassion, Dr. Maris told me to cancel the flight and not to risk Christi’s life even if we were desperate to return home. He went on to say, “I’ll be very honest with you. When you brought her in just weeks ago with such rapid progression, I was gravely worried. I didn’t know what was going to happen.” (So, now I’m defensive thinking, “What?? After being her onc for nearly 3 years he’s just now “worried”. Please join my “worried club” where I’ve lived the death/life line 24/7 for 3 ½ years.) He said, “What would you do if that happened again, or if she gets a fever? Take her to your local emergency room?” So having just been reprimanded from the great Dr. Maris, he left (He must have sent in the Social Worker as she soon appeared.) while Christi and I stayed in the room hugging and sobbing soaking in the harsh reality of our lives. Then when I finally got myself together I called Rich to tell him that we wouldn’t need him to fly us back to Tiffin that afternoon.

Later that night, Christi- the gutsy one said, “Ask Mr. Traunero if he’ll still come get us just as soon as Dr. Maris says its safe – like maybe next Wednesday. Remember - when you asked Dr. Maris if we could move up my tests and scans to get us home, he said maybe next Wednesday. It’ll be a 50/50 gamble depending on my counts. Could you call and ask him?” I happily informed her that not only had I already set this up with Mr. Traunero for next Wednesday-pending good weather, but also that his 4th grade daughter was going to pick out some DVD’s for Christi to watch on the flight home!! So, she got a transfusion and I called Liz Scott to take her up on her offer…..

Earlier Liz declared that Wednesday night was “Girls’ Night Out” and she was taking us out to the suburbs. (Earlier I told Liz, “Oh, I think we’re going to be flying home Wednesday night.”) So, as only Liz could understand, I called her and asked if the offer still stood. Christi and I had a very nice evening out of the city. While I was distracted receiving phone calls from folks back home much of the evening, Liz managed to take off with and spoil Christi – candy store, toy store, and won’t Buckeye be the cutest cat in town now that she’ll be sporting a pink, velvet collar with “Buckeye” in rhinestones?! (Yes, I kid you not!) I know the evening must have been very hard on Liz as she and Alex enjoyed going to that very same mall (King of Prussia) so many times together. I know Liz “gets it” and I appreciate her night with us more than she’ll ever know- even if I wasn’t the best of company that night. We really appreciate the Scott’s hard work they do with Alex’s Lemonade Stand – trying to cure this wicked beast and hope that Christi and I will be able to volunteer with the foundation some day soon. (And as only a fellow cancer mom would do, while Christi got car sick Liz didn’t flinch at all, she just kept on driving down the highway most likely knowing how neat and tidy a cancer kid is after years of coping with it – unlike taxi drivers who get nervous.)

Thursday the Ronald House was offering evening tickets to see a Seaseme Street Live Elmo show so I signed up – not realizing how far away it was (a $20.00 cab ride they told me). Soooooooo, don’t tell Dr. Maris that I took my daughter – yes the one without an immune system and figured out the subway. (Thanks, Bianca – great directions!!) The show was cute. (OK, I thought it was “cute”. My 8 year old traveling companion had more fun watching the cute little three year olds dancing in the aisles – and actually poking fun at the Sesame Street characters.) And now that we learned how to take the subway – look out Philadelphia (and close your eyes, Dr. Maris! You may be uptight, but we’re living life NOW!).

(PHOTO CAPTION: Commuter Christi conquers the subway!)


I miss Shayla and Shayne so much! The girls had a great chat together Thursday night, but Christi choked up when she learned that Shayla was going with “their” Girl Scout troop this weekend to the Build – a – Bear store in Toledo. With her hand cupped over the phone, she said with tears to me, “Mom, I can’t go!” I told her to tell Shayla that she was happy for her and to have fun. Oh, this just doesn’t ever get any easier. How I wish the “Thomas Two” were together as the “Thomas team” instead. I have been away from Shayla the majority of the year and it rips my heart.

On Friday, I told myself (once again) to let Dr. Maris call the shots and not to try to get home like I’ve been doing time and time again, being so disappointed every time. “You can’t live both lives. You can’t save hers and try to have one yourself right now. I can’t keep you here, but I can tell you what’s in her best medical interest and that is to remain here where I can see her and provide her with treatments you don’t have available in your home state,” he told me – while actually trying to comfort me on Wednesday. Well, I learned the guy knows what he’s talking about!

Friday consisted of nine long hours spent at the hospital as she got her blood counts checked and wouldn’t you know it – she needed a blood transfusion. Ugh! (Yet, silently, I praised God for leading us to such a wonderful doctor and for giving Dr. Maris the wisdom and strength to sit me down and tell me I wasn’t leaving the city even if they were not the words I wanted to hear.) During her transfusion Friday we played an awesome board book game (Thanks, Dale & Sandy!) and we read. At one point I noticed she was wiping tears away. Soon she said, “Mom, I can’t read this book anymore. The family is getting their new cat and it just makes me miss Buttercup and Buckeye too much.” She really wants to get home; at one point this week she asked the social worker, “Do you think I’ll be home by my birthday?” (May 12th) The social worker responded that she was the last person who would know that answer. (I do believe we’ll be home next Wednesday night and possibly for eleven days, but we’ll see what happens with Christi’s counts.)

My wonderful Aunt Marty flew in yesterday. With again record breaking temps we enjoyed the 20 minute sunny walk down to the train station to get her back to the Ronald House. Christi was getting hot in her stroller and then stated, "I don't care what anyone thinks, I'm hot," as she removed her cap and let her bald little head out. Aunt Marty will be here through Thursday; what a blessing! This morning we'll walk to church and the Ronald House gave us tickets to see the Harlem Globtrotters tonight - so we'll once again venture out on the subway.

I can’t even tell you how much the help of love and compassion our family, friends and complete strangers have been, especially in recent days. May God richly bless you all!