Journal Entry

Monday, Jan. 16, 2006

“My Hero”

written by Shelby (Christi’s cousin)

My hero can’t be under too much pressure

Or play with her sister very long

But she’ll be a ball of energy

And be tons of fun

She’s young and is starting to grow her hair back

And she has all her teeth

She is just like anybody else.

We love to put on shows

And do a million goofy things

We’ll go on all the rides

Ignoring what others think.

She has taught me to be strong

No matter what the conditions are

She has taught me to learn there is always

Something, and it is always good.

My one definition of a hero

Is someone strong.

They don’t have to be strong physically,

But strong mentally.

By Shelby

With Cousin Shelby in Florida – Jan. 06

Greetings from sunny Florida !  “Be joyful in hope, patient in affliction, faithful in prayer.”  (Romans 12:12)  It was touch and go for a while, but some Angels at CHOP and at Southwest Airlines pulled off amazing tricks!  Thanks be to God!  I wish Christi would have felt better much sooner; however, we are here and there’s just something about going “to Grandma and Grandpa’s” that makes everything much, much better!

The Phase II hu14.18 IL round one is over, yet – unfortunately, some of the nasty side effects continued to persist until Sunday afternoon (day #5). Regardless, I can now look back in reflection about the treatment itself.  Day one was by far the worst in terms of pain.  After figuring out how to adjust the meds to best suit her, days two and three were much improved – but far from a “cake walk”.  It was ugly each and every day with rigors, fever, vomiting, chills, fluid retention, pain in her head, hips and ribs and many narcotics - but she would occasionally give out a little smile which made us all melt.  We knew how much pain she was in. When her incredible nurse, Stephanie (They were all amazing:  Stephanie, Theresa, Laura, Amy, Barb, and others with names I can no longer remember.) told her that she forgot to put her warming blankets in the warmer and she didn’t know if there would be one for her, Christi responded as she was curled up in a ball and shaking in pain, “It’s okay, if another child needs it more than me give it to them.”  I teared up at her compassion for others.  About three hours each day she felt “okay” and was actually awake - so we spent those precious few hours watching DVDs, and she had me read some chapter books to her (Magic Treehouse Titanic was the favorite) while she’d color fuzzy posters and do other art projects.  Her counts have fallen more than I ever expected (and quite frankly more than Dr. Maris expected).  They will be checked during our visit to the hospital on Tuesday the 17th (tomorrow) and hopefully she won’t need any blood products and we’ll be flying home later on Tuesday.   I know Dr. Maris didn't make anything out of it (“There’s nothing in the research to prove that it was destroying the disease.”), but I found it very "interesting" that her pain was concentrated in her:  head, ribs and hips - exactly where we know her heaviest areas of disease are.  I pray it was killing every cancerous cell there - and all other places in her bone marrow too! 


Early Wednesday, Jan. 11th (after day #1)

  • White 7.6
  • Hgb. 11.6
  • Platelets 107
  • ANC 6,969

Early Thursday, Jan. 12 (after day #2)

  • White 6.6
  • Hgb. 15.1
  • Platelets 68
  • ANC 5,940
  • Friday, Jan. 13th (second draw of blood):
  • White 7.3
  • Hgb. 10.2
  • Platelets 52
  • ANC 8,320

On Wednesday night after things went pretty well with the second day of treatment, the Nurse Practitioner (Pat) asked me if I could change my airplane tickets and leave on Saturday instead or what exactly was involved with our plans.  I explained that even though I knew it was risky and knew that I may be out the money, I obtained $59.00 one way fares with Southwest Airlines so I doubted I could make any changes.  I told her that we’d just hang out at the Ronald House or a hotel for the long weekend if we couldn’t make the flight.  She was amazed at my bargain and with a smile I told her that I calculated it and it was actually cheaper to fly to Florida for four days than to rent a Ronald or hotel room and then to also have transportation and food costs too; I knew Joe and Mom would be happy to drive us once we arrived in Tampa and my sweet mother has yet to ever charge me for a meal!!  And the entertainment only her cousins can provide – PRICELESS!  What a great surprise to learn then learn that actually Pat had already written the discharge papers and if all went as well on Thursday as it did on Wednesday, it should be no problem to be discharged on Friday!!  Then she inquired about the time of my flight and when I told her 7:20 AM Friday I thought I saw her gulp.   (The next day I learned that Dr. Maris said he would be seeing Christi early Friday morning before she left at 5:00 AM for the airport.  He’s a gem!!)

So I called my mom and asked them to call Southwest Airlines and to explain the situation and see if we could be re-booked on their 2:00 PM flight instead.  I figured this would allow Dr. Maris to examine her at 9:00 AM (instead of at 4:00 AM ) and to give her little body seven more hours to recover.  (Had the drug been started on Monday as planned this would have all been much easier, but everyone working with us knew of the secret surprise and that getting all together in Florida was a big deal for many of our family members.) I received an email back from Joe saying:  “We did it !!!!!  You are confirmed on flight #2848 at 2:00PM  arriving in Tampa at 4:50 PM tomorrow. Praise God for His goodness and blessings. We will be there to pick you up with our bells on.  Love, Joe”

I also learned that getting a wheel chair wasn’t a problem either.  I responded back:  “Whew!!!!!!!!!!  She had a VERY HARD day, but I'm so proud of her and so thankful she made it.  When that fever spiked on Tuesday afternoon I thought our treatment days were over.  This is FABULOUS!!!!  “And my God will meet all of your needs according to his glorious riches in Christ Jesus.”  (Philippians 4:19)  Love, Angela”

Liz Scott (Angel Alex’s Mom) came to the hospital to help me pass a couple hours of time on Wednesday night.  I was out in the hall eating Christi’s food (She quit eating completely after Wednesday morning.) she was not going to eat for my dinner when I glanced over and saw Liz walking up.  That must have been very hard for her to come back to CHOP – without Alex.  (It was the first time I ever saw her WITHOUT Alex close by.)  So sad!  Alex’s Lemonade Fund is working on obtaining some new sponsors to help raise money for pediatric cancer research.  A cure is so desperately needed and with that comes the need for BIG money!

So with a lot of wishful thinking and hope Wednesday night I sent out the following email to let our listserv folks know what was up with this brand new treatment as many others may be considering it: 

Dear NB Family,

            I’ve been away from the support group as I’m here inpatient with Christi at CHOP. I hope you’re all doing as well as possible!!   I’m not certain how well Christi’s website has been updated, but hopefully the nitty – gritty details will be posted in my journal for others considering this trial (Phase II hu.14.18 IL).  I found it to be a nearly identical experience to the 3F8s at the great MSKCC.  (Of course I’m pretty excited about three days of treatment instead of two weeks, but tests/scans will tell if it will be as effective on her bone marrow disease as the wonderful 3F8s were for her back in 2003.)  Regardless, all went according to textbook and we are “scheduled” to be discharged in the morning and arriving before 5PM in Florida for the long weekend!  Yahoo! 

With crossed fingers and much hope of a discharge and a swimming pool,

Angela – the Thomas team Mom

PS:  Fellow listserv fighter, Sweet Gage is right across our windows from us.  He is a cutie in his transplant room!  Goooooooooo, Gage!!!  We’re doing the white cell dance for you!  (Christi painted him some signs and has them hanging up in our room for him to see.)

Unfortunately, Christi didn’t “come around” as well or as soon as all of us had hoped and expected.  I was really questioning if I was doing the right thing or not by flying to Florida with her come Friday morning.  She was sleeping around the clock and complaining of a headache.  The sweet team at CHOP assured me that she should soon be feeling better and that she had plenty of fluids and that her blood counts shouldn’t drop any more so she was fine to go to Tampa .  I was very hesitant.  Finally, at 11:00 AM I thought I’d better get some lunch before we hailed a cab at noon and on my way to the cafeteria I finally got a glimpse of the “outside world”.  I immediately called my Mom.  “It’s terribly foggy outside.  Please call the airlines and see if our flight is delayed.”  Sure enough, it was.  That delay gave us an additional 1 ½ hours of rest time and I consider it a real blessing. 

With help from a sweet nurse I was able to push a sleeping Christi in her wheelchair and to take our suitcases and get into a 2PM taxi that I arranged for ahead of time.  The porters are Southwest were incredible bending over backwards to assist Christi and I through security and getting us right to our gate.  Christi just curled up in the wheelchairs and then slept the entire three hour flight to Tampa .  Mom and Joe were standing there waiting for us and I was full of tears – so relieved to have arrived and so saddened that Christi wasn’t feeling very well as I had fully expected by Friday night.  Joe gave me an awesome backrub before I went to bed and I slept soundly for a lengthy eleven hours that night.

Due to weather delays, my sister Tina and her family didn’t arrive in from Ohio until the morning; I was so happy to see them walk in!!  I just wish Shayne and Shayla would have been able to come down here too, but when we checked airfare for them it would have been over $700.00 for a 48 hour visit – didn’t exactly seem like a good idea.  Boy how I’ve missed them over the past nine days!  Hopefully, tomorrow we’ll all be together again – until Wednesday when Shayne has to leave town for work for a few days, ugh!!  (I’m thinking when he gets back home on Saturday he’s going to attach us to his body and never let us part from him again!  Hee hee!)

At Mom’s Christi started going to the bathroom and eating cereal.  Unfortunately, her headaches and queasy stomach persisted until yesterday afternoon. The swelling in her eyes finally ended yesterday.  She spent the majority of the time in the guest room under the covers, breaking my heart she wasn’t up and playing with her beloved cousins – until yesterday.  The “flu like symptoms” that were expected to linger did exactly that.  I was worried and couldn’t leave her despite others offering to stay back with her for me, but I couldn’t.  “Are the headaches from the treatment, the disease or from coming off all of the narcotics?”  I didn’t know, but now that all of that is over, I do believe it was from the clinical trial.

By Sunday she was completely normal and not in any pain.  Today she played tennis and went swimming with her cousins and had another lovely day together.  Tonight Grandma Nonee is going to finish sewing the elastic and pink ribbons onto her pointe shoes.  There is a possibily she’ll make it back to dance class late Tuesday night and that is when the girls are to learn how to tape their toes and to use the lamb’s wool.  If we have a good visit at CHOP tomorrow morning, that all should happen.

Thanks, dear Partners in Prayer for checking in with us!  The quick trip to Florida was the very best medicine – at first for me and then finally for Christi too!  I feel recharged and ready to get back to the hospital and then to school on Wednesday!  God willing, that shall happen!  Have a great week and stay healthy and warm!


PS:  The 42 vials that were lost at CHOP of the new medicine in short supply was actually two rounds of Christi’s medicine that was ruined.

PSS:  In hast at the hospital I wrote my 1-09-06 journal entry when Christi’s treatment had been delayed and I now realize that I forgot to give a bit of a background of the John Paul Jones quote during the American Revolution.  When asked if Jones was ready to surrender, he responded, “I’ve not yet begun to fight.” 

What’s Next:  check ups and blood work at CHOP at 9:30 AM tomorrow.  Due back at CHOP for round #2 on February 6th.  Shayla turns “7” on Saturday, February 11th; I don’t see how we’re going to all be able to be together for her birthday that Saturday, but my mind is turning trying to figure out a way.  It is so hard being apart and that little thing is always “second fiddle” it seems!  Sounds like she had a nice time with Shayne.  I spoke with her frequently via telephone.  They made snowmen, went sledding, went ice skating and he even took her downhill skiing at Snow Trails in Mansfield .  Thanks to Grandma’s broken collar bone, Shayne had help getting her to school and activities and even had some wonderful meals! Thanks, Nee Nee!

Shayla’s Funny:  Fridge Hanging! 
Talking with Shayla I always asked her if Daddy was taking good care of her.  She repeatedly told me yes, but I did hear another story one night:   Shayla said that she wanted something on top of the refrigerator and Daddy told her if she wanted it, she should get it herself.  Shayla told me:  So I slid a chair over to the fridge and I climbed up.  When I still couldn’t reach it, I stood up on the arm rests, then up on my tippy toes.  Then I felt the chair moving below me.  I grabbed the top of the fridge door and hung on. When Daddy heard the chair crash on the floor he came running and said, “Ok, Shayla.  I’ll get that down for you now.”  (Yeppers, been have a great time with Daddy!)  hee hee!