Journal Entry

Thursday, December 1, 2005

"It was always said of him, that he knew how to keep Christmas well, if any man alive possessed the knowledge. May that be truly said of us, and all of us! And so, as Tiny Tim observed, 'God Bless Us, Every One'!"
(Charles Dickens)

Baby Christi – 7 months old
(Photo taken Dec. 1997)

Hello to the sweet Christi Crew!  Thanks for checking in!  I feel that each “hit” on Christi’s website is a little hug – keeping us chugging along!  Since my last update we’ve had good days and bad and we’ve made a lot of treatment plans; it appears that life is about to change (again) for our family! 

Two of our sweet little friends in Christi’s Clubhouse earned their Angel wings and flew from the arms of their parents back to the arms of the Lord.  We treated with Jonathon Watson, from Canada , in NYC and with Liam Kane at CHOP.  Their parents are incredible folks who treasured and cherished their precious boys.  With Jon having been in treatment for nearly eight straight years, I some how always thought he’d pull through – even though I know of only one other relapsed/refractory child (Nick Snow) to ever do so.  And I’ll never forget Liam’s sweet father waiting for me at CHOP when I had just returned from Christi’s MIBG scan this summer and how I collapsed into his arms and sobbed.  Never did I dream this would happen to his precious little guy – so quickly and on my birthday too.  This hateful beast is merciless robbing us of two great guys within hours of each other.  It’s maddening!

One day I received a horrible text message from Shayne.  It said:  “%$!X!!*” (profanity which Shayne rarely uses so I knew it was horrible news) “Kay Lyn died”.  Oh, my mind raced to her sweet little children (ages 8 and 6 – sound familiar?) and I crumpled to the floor and sobbed and remembered running into Kay Lyn at so many preschool events where I took Christi & Shayla and how much she loved her kids – even quitting her job to stay home with them.  This is so unfair!  Kay Lyn (forever 37 – sound familiar?) had been fighting cancer, yet we thought she had been doing reasonably well.  MANY, many times Shayne and I said, “What can we do for Tony and Kay Lyn?  Recently, we even had a big yellow “post it” note on the microwave with “Kay Lyn” on it because we felt it would remind us of something we could do to help them. They gave so much – sponsoring Shayne in his “Fred’s Team” marathon event and just knowing they were there with all of his training as he’d end his runs going past their home in case he’d need help.  I remember at Heidelberg Kay Lyn telling Christi that she’s amazing with how she bounces back after her rounds of chemo.  Our hearts and prayers are with her wonderful family and we believe Christi has another Angel in heaven protecting her too.  Rest in peace, sweet Kay Lyn.  We love you and yours!

Last weekend we attended a fabulous benefit fundraiser for a little girl in our hometown who was diagnosed with a brain tumor.  It was a “Father/Daughter dance” – so cute!  Christi told us on the way home that she finally got Kayla to talk to her while they were creating their princess crowns.  (Beautiful Kayla appears to be very, very shy!  That doesn’t sound familiar!!  Hee hee!)  Kayla’s website has been added to Christi’s Clubhouse for those who may like to follow her journey.  Please lift up this special little girl and her wonderful family in your prayers.  December 1st’s scan results will truly make a difference between life and death for this treasured little child of God.

On the Wednesday before Thanksgiving, Christi brought the following home from school.  (Oh, don’t these teachers know how to make parents cry!!!  Thank you, Mrs. Smith!)

“I Am Thankful”
by Christi S. Thomas
November 2005

I am thankful for my family because they take care of me, feed me and they love me.  When I am sad, I can go to them.  At night they tuck me under the covers and I love my family. 

Shayla listed that she was thankful for:  Mom, Dad, Christi, Harris, pizza and candy

The day before Thanksgiving I received word from the sweet Toledo NBC 13 News Reporter, Melissa, that she wanted to do a follow up story on Christi and thought that Thanksgiving would be a good time to do that.  We have been blessed beyond belief in my mind so I thought that sounded fine.  Melissa asked for our plans for the day and she responded that they could either join in at my Mom’s around 4:00 or join us back in our own home at 6:00 .  Well, keeping in mind the fact that we’ve painted all of the walls, but don’t have any curtains up yet or nice furniture I responded that Mom’s would be best.  Then I did what any good daughter would do (wink!) I called my sister to tell her what I had just done to my poor mother.  After Tina’s “You didn’t!” she and I both shared a good laugh.  Then I asked my older sister for her advice and wisdom because isn’t that what little sisters are supposed to do? “Do you think I should tell Mom that a TV news crew is coming to their home for Thanksgiving, or just surprise her?”  We shared another hearty fit of giggles before I responded back to her, “Of course I will, but I’m going to call and tell JOE!  I’ll let HIM tell her.”  Actually, she handled the news just fine! 

Thanksgiving was absolutely delightful!  Our family had not been together for four years – since 2001 the Thanksgiving before cancer came crashing in – uninvited!  Our morning started out with Shayla in our bed sitting up declaring, “It’s Thanksgiving!!”  Much to our delight, the girls LOVED watching the fascinating Macy’s Day Parade.  I emailed 15 parents who lost their children to neuroblastoma this year as I fully understand how hard holidays are without these great kids.  It’s heartbreaking.  Then it was off for Thanksgiving dinner where Christi took her very first pumpkin pie to share.  It was delicious and she was proud!  The beautiful – inside and out, reporter Melissa M. from NBC Toledo 24 news and her cameraman, Bill, arrived in the afternoon.  We thought they did a very nice job with “the story”.  Here is the link for anyone who may like to check it out, then click on “video”.

Over the weekend we got out ALL of the Christmas decorations – something we hadn’t done since 2001 (the year before Christi was diagnosed with cancer).  We didn’t put all of them up, but it was a lot of fun to go through everything – to watch the girls put the ornaments on the tree and to witness each girl setting up their very own nativity set from their Godmother (pronounced “Activity Set” by Shayla instead of “Nativity Set” – so funny!)  It’s hard to believe today is December 1st and soon we shall celebrate the birth of our Savior!

And there have been many “medical decisions” made since my November 10th update.  The round of chemo was pretty rough on Christi.  She lost much more of it than ever before and just couldn’t control the vomiting some mornings.  What a gut wrenching thing to clean it up with your heart breaking and then to have to hurry everyone off to school pretending as if nothing had happened at home.  I can’t believe the horror of it all, yet I remind myself of how lucky I am to still have Christi even in this fight! 

One morning before school a student I had last year was walking up to me and I immediately noticed her very short, very chic hair style – it had been well past her shoulders.  I told her how stylish she looked and she said, “I was just coming to see you.  I want you to tell Christi that I have a long braid on my dresser to send in for Locks of Love.  I’ve been growing my hair since Christi got cancer.”  Tears welled up out of no where.  I somehow got out little things like how sweet that was and how much another girl would appreciate it and then I said, “I’m sorry, but I need to excuse myself now before you really see my tears roll.”  And she responded, “You taught us it’s okay to let people know how we feel.”  Oh, what amazing and special students we have at my school!

So here are the next steps of Christi’s treatment:  She’ll finish this round of irino/temador/celebrex – her ninth round.  We’ll join “Webby” (now renamed “Captain Cook”) and his awesome wife on a three day “Disney Cruise” where Eric will take the girls to “Swim with the Dolphins” in Nassau and the very next day following our flight back to Cleveland she’ll start chemo round #10 of the irino/temador/celebrex and also start external radiation to the new tumor. 

I know a mother shouldn’t be thrilled that her daughter has to undergo radiation, but we feel very blessed.  Christi will be the very first pediatric patient to receive radiation at the new radiation center – in town!!  We’re very thankful that because she’s mature enough to hold still they’ll “zap” her here for a few weeks.  This will allow us to continue working and to save us three-four hours per day of driving to either Toledo or Columbus for her radiation.  Furthermore, she will finish right before Christmas and get that following week off with no treatment.  We praise Him!  (And pray that it zaps the new area of disease to smithereens!)  While she’s had the internal, full body radiation (MIBG) she’s never had external radiation before.  We don’t know how bad the side effects will be, but we’re confident we can handle it with everything else she’s been though.  So with that arranged, I knew it was time and I would have to tell Christi what was up:

The teacher in me made me read Christi & Shayla the new chapter book of "Chicken Little" prior to seeing the movie.  Last Wednesday upon entering the theatre I could see the local ads and commercials were running.  Just as we settled in, the new radiation center's commercial came up.  I decided this was the moment to tell Christi that she was starting yet another treatment. After the ad ran I whispered, "What do you think?  Any questions?"  She replied, "Did you get butter on our popcorn?"  Ahhh, the joy of being 8!

Later we did have another talk about it and she just wondered how long I would have to be out of the room while she was getting her radiation treatment (not long at all), if it would hurt (the treatment won’t – we don’t know the side effects), if she would lose her hair (no) and if she could still go to school (yes).  What a discussion to have with your eight year old daughter!

Then what will be a HUGE adjustment for our entire family is the new experimental study that we’ve been eyeing since the fall of 2003 is finally open!!!!   (Yeppers, we’ve waited for over two years to get this trial open for patients and finally our dream has come true!!)  Christi’s former oncologist at CHOP (Dr. Suzi) is the co-chair of the study.  Even though Dr. Suzi has moved onto Boston Children’s we’ve pestered and pestered this poor gal since August of 2003 about WHEN it would open, when they’d start treating patients, and which institution would get it open first.  We knew we’d go anywhere to get it for Christi.  It all recently came together and good old, CHOP has come to our rescue! 

If all goes as planned, (always a big “if”) Christi is scheduled to begin the “hu14.18-Interleukin-2 Fusion Protein” Phase II study for relapsed neuroblastoma at CHOP in early January.  Praise God!!  “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”  (Romans 15:13)  We’re trying not to get our hopes up, yet without hope we wouldn’t survive.  Her participation in this trial will be very hard on her little body and it will also be very hard on our family.  We hope our friends and family will be able to help us manage especially with Shayla’s after school care.  I will be flying to Philadelphia with her for her pre-testing beginning on January 2nd.

If things work out and she does get to attempt this study, beginning in early January she’ll be inpatient receiving the protein fusion treatment about a week.  (This is an immunology experimental trial.)  It should cause fever, vomiting, diarrhea, chills and pain.  It’s not going to be easy to make a pain-free child endure this or to be able to explain it properly to her when she currently feels so well, yet we know we don’t have other good options to save her life.  She’ll then be able to return home (hopefully for three weeks so we can both return to school) before returning to Philadelphia to repeat it again for up to ten cycles – all depending upon her cancer remaining stable or improved.  Again any progression will kick her off of the study.  This is going to be grueling; yet, we are filled with hope that she may indeed be able to participate! 

Christi’s questions about this trial included:

  • Will we stay at the Ronald McDonald House?  (No, it’s an inpatient for about a week process and you most likely won’t be feeling very well so you have to get fluids and stuff through your port to make you feel better.)
  • Will you stay with me or at Ronald?  (Mommy will sleep on the chair beside you.)
  • Will you pack my bead kit so I can make those bed key chains for the nurses’ keys?  (Yes, but you most likely aren’t going to be feeling very well.)
  • Can I take my piano books so I can play that piano in the hallway for the sick kids?  (Yes, but you’ll probably not be up to getting out of bed.)  This one cracked me up as again she’s always wanting to do things for the “sick kids” at the hospital – never realizing that she is a “sick kid” herself!  Crazy!
  • Will it hurt?  (Possibly.)
  • Will I lose my hair? (No.)

I also reassured her that she wouldn’t have her immune system destroyed so that we’d be able to return to school, ballet, piano, etc. upon our return home.  (Of course we’re charting uncharted territory here so I’m not exactly certain how this all is going to come together – and if it’ll even come together at all, but with our little pioneer leading the way I’ll follow her wherever she takes me upon her journey!  I love her so!!!  What would I do without the daily little giggle?) 

While in the midst of this new trial, we feel it’s vital to have Shayla’s life continue on as normal – attending school every day yet that is where we’re really going to need some help from friends.  Please email if you may be able to help out while I’m in the hospital with Christi for about a week each month.  I know it is quite a bit to ask for help, but I’m praying some kind folks will be able to help out after school and also hopefully get Shayla to Girl Scouts, ballet and religion until Shayne gets out of work. It breaks my heart to think of our family split up and living 500 miles from home again, especially with the girls playing like best friends instead of sisters most days.  Ugh.  This beast just doesn’t quit, yet I’m very hopeful for this trial may help us get to a cure somehow.  I’m certain all of this can be managed and that is my prayer request.

Many days we thought this trial would NEVER open; so many things went wrong and took so long to get through all of the requirements necessary to run a pediatric trial, but finally it’s open and she’s bartering for a slot to attempt it!  Of course her participation in this study is also dependent upon her blood work to be conducted at the hospital on December 5th.  You see if she already has the antibody than she will not even be eligible for this trial.  That would be a terrible blow!  She did have four rounds of the 3F8 (mouse antibodies) in NYC and it is a possibility that her body already has this antibody, but we pray that is not the case and that she can also receive ten rounds of the humanized antibodies.  So that is our big news!  We’re scared, but also full of hope!!  Dear Lord, please get Christi into this experimental study.

So to wrap this entry up:  Christi continues to feel well and to actively participate in her many activities.  The piano is something she heads for nearly each time we return home.  It’s absolutely lovely to hear beautiful song after beautiful song while we go about our house work.  The girls really enjoyed their “slumber party” at “Grandma” Donna’s, Mom and I celebrated our birthdays on November 19th, Shayne and I celebrated our 14th wedding anniversary by going out to dinner following by some dancing – thinking about Dan and Laura who share our anniversary day and who live in New Orleans, the girls had a ball at Great Aunt Marty and Uncle Jeff’s and we enjoyed a fabulous Thanksgiving with Shayne’s side of the family a few days after Thanksgiving in Crestline. 

Christi is eager about her ballet class starting point shoes come January.  I know it’s a long way for her to get there and she’ll be missing a lot of dance classes due to the new clinical trial, but she mentions this big step a few times each week.  Over Christmas vacation we’ll go to Toledo to buy her first pair of point shoes and we’ll pray that she’ll really get to dance in them and that they won’t be her last pair. What joy for our little ballerina!  She was also excited that this year she won’t be wearing a little tu tu for the dance recital, but instead a long skirt “big girl style” ballet costume.  (Personally, I prefer the tu tu action myself, but……….I guess she is eight!)  She gets fitted next week.

Since this journal entry started on terribly sad notes, I’ll end it on a better note - with my personal exciting news!  About a month ago I presented a session on teaching adolescent literacy.  After the presentation a women came up to me and asked me to write an article about my presentation for their on-line magazine “In Perspective”.  I agreed.  It was my first time to work with a real editor.  It was a fascinating process so much so that I shared all of my errors (clearly marked in RED) with my Principal who also found it of interest.  The editor and I had about fourteen exchanges of my text; she made large changes – like an entire new title, and many small changes, spaces, etc.  In the end I was pleased with the final product!  If interested, you may view it at the link below:

Here’s wishing you a joyous, happy and healthy holiday season!  I’ll update after the Dec. 5th blood results to let you know if she is indeed eligible for the protein fusion study and where she stands in that process.  Thanks for checking in.  Sorry this was so lengthy!

With peace and gratitude,

Christi’s Jokes:
What do you ask a boy skating on thin ice? (Can you swim?)

What do you call Frosty in the summer?  (Puddles!)

What’s next?  More chemo, a Disney Cruise where our “Goofy Gang” will be joining  “Webby” aka “Captain Cook”, more chemo, radiation, Christmas, and then off to Philly for testing followed by the new protein fusion study – if all goes well. 

Prayer Request:  That Christi’s blood work on December 5th indicates that she does not have the antibody and that she’ll be able to begin the protein fusion study in early January and that the weeks of radiation will forever kill the new area of disease.  We also ask that sweet folks will be able to assist with our precious little Shayla during the upcoming months while I am in the hospital with Christi to keep her life as normal as possible – even though it’ll tear my heart not to be with her and Shayne.  Lord, hear our prayers.

Shayla’s Funny:  I showed Shayla my new shoes and she proceeded to try them on and walked around the kitchen making “clip clop” sounds.  I said, “Aren’t they stylish?”  She said, “They look like elf shoes,” which cracked me up.  Yes, she’s right – they do have long pointy toes!

Christi’s Persuasive Writing Piece (completed in Mrs. Smith’s 4th grade class)

Why I should get a horse.

Dear Mom and Dad,

I think I should get a horse because I will learn a lot of responsibility.  I already take riding lessons.  I will take care of it.  I could pay for a lot of the supplies.  I know a horse costs a lot of money so if you would like you can find one that is cheap then save up for a while, or you can wait until I’m older.  I could get exercise when waking it.  I could help save up for it.  I hope you will get me a horse.  Remember all of the things I said, the four reasons and things I mentioned.  Now I have reasons for me to think it is a good idea.


Christmas Wishes

"All I Want for Christmas is my Two Front Teeth" (hee hee!)  Shayla recently lost her front tooth.  It’s really changed her smile and we’re singing this song at our house.    

"The Twelve Days of Radiation" (Christi’s newest song)

Seriously, we need nothing for Christmas.  For those family members who insist on buying something I do have a couple of suggestions of things I will be purchasing for Christi’s hospital stays:  silky pjs and slip on slippers.

If you remember when Christi was five she really disliked wearing the hospital’s nightgowns; therefore, my mom bought her some cute and stylish pajamas which she wore instead.  Now that she’s eight I’m certain she will again not desire to wear the hospital’s clothing.  (Who picks out that material anyway??!! Hee hee!) Christi has two pairs of the really silky pajamas (They’re 100% polyester actually), but I’m certain with the side effects listed and the number of nights she’s required to stay that two pairs will not be enough.  (Mom has also repaired torn britches on more than one occasion with the one pair.)  Christi doesn’t care if they’re nightshirt style or pants/top style, but she really likes the silky, slippery ones.  She wears size ten clothing so I think size 10/12 jammies would be great.  She also does not have a pair of the slip on type of slippers.  (She wears size 3-4 shoes.)  I don’t want her walking around the hospital floors, pulling her IV pole and picking up germs to put back in her bed so I’d like to pack some slippers for our stay.  Other ideas:  She’s also asking for “Hot Wheels” this year.  She’s interesting in building tracks and trying to race cars she said.  She loves animals and wants to be a vet.

Shayla is a “soapie” fanatic!  What does this mean?  Shayla has a little collection of mini soaps.  She in particular likes different colors, shapes and smells.  I know it’s an odd fetish, but it’s really quite cute. She begs to take baths all the time and we get a kick out of watching her line up the “soapies” to determine which one will earn the top prize of accompanying her into the bathtub.  Some are too pretty to use so she keeps those in her collection.  (What a hoot!)  Other ideas:  she’s into cheetah/leopard print items.  She loves animals of all kinds.  The girls enjoy playing with “My Little Pony” items together.

I also do not have a pair of the slip on slippers which I would like to take to the hospital with me.  (I wear size 8 ½ shoes.)  I would also like to take a comfy, casual velour sweat suit that I can sleep in and still look okay to run down the hall to get her milk or a video or something.  (I wear size 9-10.)  Again, truly we need nothing.  These ideas are for any one who insists despite my comments of “We’re okay!”.

Phase II Study of hu14.18-Interleukin-2 Fusion Protein in Children with Refractory or Recurrent Neuroblastoma

I don’t want to put the cart before the horse as I know this trial may not even work out for Christi, yet for anyone who may be interested in what this new immunology study is – read on!  (There is even a picture to show you how it’s to interact and then attack the neuroblastoma cells.)

hu14.18-IL2 is a new anticancer agent that targets tumors that express the GD2 antigen, and was produced by molecular engineering technology. hu14.18-IL2 consists of the humanized 14.18 monoclonal antibody, linked genetically to the human recombinant interleukin-2 (IL2) lymphokine. The GD2 disialoganglioside is strongly expressed on virtually all cases of human neuroblastoma, as well as expressed on several other human cancer types (including melanoma, small cell lung carcinoma, osteosarcoma, and soft-tissue sarcoma). IL2 has been tested extensively in clinical cancer trials and is approved as an immune activator with documented anti-tumor effects in certain cancers. The chimeric form of the humanized 14.18 antibody (the ch14.18 antibody) has been tested as an investigational therapeutic in Phase I clinical trials, alone and combined with other treatments including IL2, and has shown some antitumor effects in these studies, including testing in pediatric neuroblastoma patients. Preclinical studies performed in vitro with human cells, in vivo in SCID mice bearing human tumor xenografts, and in vivo in immunocompetent mice bearing syngeneic tumor cells that express the GD2 molecule suggest that the hu14.18-IL2 fusion protein may have a greater antitumor effect than either IL2 or ch14.18 or a combined regimen that includes both IL2 and ch14.18 molecules. Recent preclinical data show the hu14.18-IL2 fusion protein has similar antigen binding and lymphocyte activating capabilities as the ch14. 18-IL2 fusion protein. However, unlike the chimeric molecule, since it is based on a humanized antibody, rather than chimeric, it should not induce neutralizing antichimeric antibodies in patients receiving it. This protocol is designed to obtain the first clinical data with the humanized antibody/IL2 fusion protein in pediatric patients in the United States .