Journal Entry

Friday, August 19, 2005

“For I will restore health unto thee, and I will heal thee of thy

wounds, says the Lord.” (Jeremiah 30:17)

We’re home!  The journey felt like an eternity as I witnessed so many sick children stricken with inexcusable diseases and so many helpless families immersed in profound sadness – including myself.  This journal’s news will be dismal at best.  With heartbreak and numbness, I sadly viewed terrifying cancers robbing children of innocence with each room I walked past in the large oncology department at CHOP.  Ahhhhhhhhhhh, it feels good to be back home – with Christi still safely tucked into her own bed, in our own home, and currently free from the tubes and wires that have all too often rudely invaded her precious body.  And never once has this 8 year old child asked, “Why me?”  I can’t say the same.

Prior to our departure to Philadelphia , we spent a fabulous weekend on Lake Erie at Grandma Nee Nee’s with the Cooks (aka “Christi’s Webmaster” and his awesome wife - Alicia) – complete with their wave runners.  This beautiful, wonderful couple has richly blessed us in unimaginable ways.  We will forever be filled with gratitude for their friendship and love.  We also went on our 4th annual “Girls Day” to the Toledo Zoo and Chuck E Cheese’s with Grandma Donna, Katie and little Donna.  What joy!  Our family’s final night together found three of us doing the pilates video while Shayla tended to our exercise needs bringing us barrettes to keep our hair back, towels to soften the floor and giving us back rubs – so cute!  I knew I’d really miss her while we were gone.  Christi said many times, “I just wish we all could go together.”

Trying not to “freak out” due to the increased tension and stress resulting from the upcoming scans, I definitely was on pins and needles – noting every little change in Christi.  Thankfully finding child care for Shayla this time was relatively easy because my dear teacher friends hadn’t yet started back to teaching.  In the care of Caroline, Jami and Anne (who all ironically teach for three different school districts) I knew Shayla was in the best of care and would be treated like a princess.  (She was!)  Shayne said via phone one day while I was at the hospital, “You have the sweetest and most precious friends.  They are darling and generous.”  I agree!  We’re spoiled!

In Philly we experienced flawless travel, a big hike in taxi fare and once again the gorgeous campus of UPenn where we strolled hand-in-hand our first night there and I prayed I’d come to visit her as a healthy UPenn student one day instead of just a “wanna be” like she currently is now. 

A very pleasant surprise greeted us on our first morning.  While waiting for the Ronald shuttle to the hospital our Philly friend from the US Mint walked up!!!  I did a double take assuming it was another parent catching the van yet found myself quickly hugging Tim.   Even if only able to chat for a few minutes, his visit was very uplifting.  (And thankfully he could open Christi’s Gameboy game that I could not so he saved the day for Christi too!  Whew!) 

Knowing Tim and his sense of humor I knew he’d approve of my next stunt. Since CHOP accidentally lost her urine sample recently, after we opened his sweet gift bag I used the gift bag to deliver Christi’s urine sample to the nurses.  (“Oh, here’s a special present for you beautiful and talented nurses!”)  hee hee hee!  They cracked up and promised not to lose it.  They are true Angels on earth working miracles every day!!

There was a little miscommunications when she went to get her MIBG injection.  They must not have noted that her mediport in her chest had been accessed back in the oncology department (along with many tears), so the next thing I knew we were in an inpatient room and they were getting ready to put an IV in her arm.  I soon stopped that and trust me the nurses were just as relieved about not having to insert an IV as Christi was relived that they weren’t going to stick her with yet another needle.  Her blood counts came back great:  4.0 white, 10.8 hgb, 156 platelets with an ANC of 2,080.  Yahoo!!  I breathed a huge sign of relief about that good news – little did I know I breathed too soon as there would soon be absolutely no good news about this trip. 

Her LDH level wasn’t ready yet so they told me to call in an hour and from another area of the hospital I did just that and thought that the lady on the phone must have had the wrong LDH number – certainly her LDH (which measures tumor activity and the aggressiveness of the cancer) hadn’t nearly doubled in just six weeks.  So with an LDH number of 1,082 that immediately tipped the hand for me and I knew that in the morning I’d learn her new tumor would be larger and I thought possibly another small one would be there somewhere – little did I know that would have been a HUGE blessing compared to what we found instead.  Oh, this beast is a devil!!!!!!

So despite having to walk in the rain to the UPenn Animal Hospital , we arrived (just a wee bit soggy) for Christi’s special tour and I cannot even begin to explain the joy that place and those incredible people gave to Christi.  Thank you all!! It was absolutely amazing!  Jodi, the sweet “Vets’ Pets” Ronald Volunteer and her friend Dr. Karen (an oncologist at the Animal Hospital – no I’m not kidding!) provided us with a most exciting and intriguing tour!  Did you know that they even do kidney transplants?  When Christi learned that if your cat gets a kidney transplant, you have to adopt the donor cat too she was thrilled with the idea.  (TWO CATS!!!!!!!)  We couldn’t have experienced anything more fascinating!  The large emergency room, recovery room, operating room, radiology, exotic animals, etc. a dog getting physical therapy, a CT machine – just like Christi’s, a cat with a chest tube – just like Christi, dogs there for chemo treatments – just like Christi, pets with IVs – just like Christi.  The similarities were remarkable and they let her know they plan to see her there in a number of years as a vet student.  She’d love nothing more!

Upon returning to our little room at Ronald, we saw a package had been placed inside our room.  It was from the wonderful Robin - our gifted ed. friend from U Conn.  With 20 Questions, folded thingies and a drama book Christi sat on the bed and played for over an hour while I took a much needed nap beside her.

In the morning, the true horror began.  After a quick kiss, she hopped up on the scan table and in she rolled.  Little did I know my tears would soon be rolling too.  Immediately on the screen I noticed that the entire top of her skull was lighting up.  “Certainly she can’t have that much new disease.  They just didn’t scroll the lights down on the monitor,” I thought.  Then it moved down and I could see that yes indeed that it was indeed new cancer.  Some areas of her face, soft tissue areas, were clear and bone areas were not.  The entire crest of her skull is now full of cancer.  I called Shayne and whispered into my cell phone and despite the fact he likes to tease that I can’t read those dots and that I’m not a doctor – he knew I had it right.  It moved on down and I could see new spots of disease in her ribs, her upper arms and the small spot we were very concerned about six – seven weeks ago was MUCH MUCH larger now.  Again I called Shayne with the “play by play” as I did about three more times during the hour scan and I knew he was crying on the other end as well.  My worst fears had come true.  I also noted new disease in her femurs and pelvis areas.  When I received the official printed reports last night, I realized that I had overlooked the involvement in the sternum. 

They re-scanned her head and then we were done.  Even though I had wiped my face dry getting ready to face Christi it suddenly hit me that as soon as we stepped out in the hallway I was going to break down and I had better have the talk with her before I did and before she felt like I was hiding something from her. 

We sat down on the bench and I hugged her knowing tears would soon be pouring down my face; I had to get to the punch line now.  I somehow managed to tell her cancer was a lot more and in many spots all over her body now.  Only through His power, I was able to calmly explain that Dr. Maris wouldn’t make her take the ABT anymore, but he’d most likely give her new treatments to try to get rid of all of this new cancer, but I didn’t know what it would be.  I think she “got it.”  She so bravely and so innocently said, “Mom, I’ll do anything.  I’ll even do radiation and antibodies again.” (Two treatments she hated!)  Oh, if it were only that easy sweet pea.  If only that would work!  Shayne told me that when he later told Shayla (Sissy is now 6 ½.) she asked if the new medicines would work better.  Shayne could only respond, “I hope so, honey” before breaking down.

CHOP isn’t rated the best in the country for nothing!  When there is bad news it travels fast at CHOP; they immediately took action!   While walking back to oncology where our appointment with Dr. Maris wasn’t for an entire hour and a half, I passed the social worker who said, “I’ll meet you in the hall.”  Upon our arrival back in oncology, a new parent I met at the NB Conference had been sweetly camped out and just waiting for me.  Although not at all of deserving to get hit with my bomb when he’s dealing with his own son’s outright war, I sent Christi to the playroom and sobbed into his arms and then we chatted.  (Please keep Liam in your prayers.  His website is in Christi’s Clubhouse at The wonderful Nurse Practitioner split us up and told me Dr. Maris was ready for me.  Not wanting her to worry about having to tell me this news I thought I’d better tip my hand so I said, “I know, Pat.  I saw it all. The LDH tipped me off yesterday.  It’s okay.  Christi knows too.  I told her.  Do you now want both of us or just me?”  She said, “Just you.”  And I was thankful. 

Dr. Maris, Pat and another Doctor soon entered.  Thankful for modern technology I had Shayne on my cell phone via speaker phone - not looking forward to THAT bill as we were with Dr. Maris for an hour; however, it allowed us to make our decision right there and to leave with her new clinical trial drugs.

We truly don’t know how Dr. Maris can do his job every day.  Dealing only with neuroblastoma, he knows that the vast majority of his patients will die and yet he’s so full of compassion, professional and infinite wisdom.  We have been so richly blessed to be his care!  At the very end of at least three sit down meetings with him yesterday I reached out to shake his hand and was so kindly given a kiss, hug and have a safe flight back in return.  We are filled with gratitude for this man’s tireless work on behalf of Christi and many other precious children.

So according to Dr. Maris, “It looks bad.”  She has widespread disease and it is 100% growing and growing fast.  The ABT is in her past.  He believes that we need to move quickly.  He stressed the point (and we don’t really understand this one) that she is no longer refractory (non-responsive to treatment) but she is now a relapse case.  I thought since she was never NED this would be classified as progressive disease.  I thought that relapse was reserved for those who were in remission.  So regardless of the distinction, it’s not a good place to be in!  He believes we now need a more aggressive approach to try to knock it down.  He told us that we are a couple, unlike most of the parents he deals with, that does our homework and researches our options.  He asked us what we wanted to do.  We explained that what was important to us right now was just getting Christi on something that would allow her to begin fourth grade on Tuesday – and she will!

He informed us that some others who progressed on ABT have gone on to get their disease back under control.  He informed us that Christi is in a good, unique position in that she’s never been through transplant which gives her many options and he also stressed he’s not giving us any false hopes; there is no cure.  This is not good.  He explained that she’s felt well for a long time and now all of that is about to change. He went through the options and then made reference like, “I know you talk with other oncologists, you’ve discussed this situation, what do you want to do?”  Boy, is he good!  He’s right!  How did he know?  Yes, we’ve done all that, but hypothesizing around one’s kitchen table and actually making the treatment decision are two different things – here we go again, yikes!  I don’t like being in these shoes and having Christi’s life in my hands.  I have to live with myself and with my decisions.  Oh, this totally stinks! 

Dr. Maris’s first three options include three Phase I trials:  BSO/MEL, PZA and Decitabine – all pretty hard and pretty tough treatments, without any known results except for in test tubes (There is a big different between curing kids and killing cells in test tubes.).  He said the only thing non IV and all oral would be the Phase I irino, but it most likely won’t hold this aggressive disease back.  After much discussion, we decided on the Phase I (off study though) Irino/Teme / Cebrex trial.  He explained that the drugs were very rare and very expensive, but it would allow her to extend this “normal” time until her disease breaks through – which it will.  He explained that there would be some insurance issues to overcome to try to get this drug and we had a flight to catch.  I told him we could go home tomorrow or whenever that didn’t matter.  Airplanes fly every day.  We needed to get Christi what Christi needs first.

They brought Christi in for the exam and I knew Dr. Maris would talk to her – and I was worried, but shouldn’t have been.  He asked if she knew what was taking us grown ups so long and he explained that the medicine she had been on since she was in the 2nd grade had been outgrown and that he was going to trade that one chemo for three new chemos.  She seemed okay with all of that and told him she’d take her medicines.  (But boy I don’t think she knew right then how horrible they would be, geez!  Many yucky tasting liquids at special times and many pills too.  (Oh, time to strap my helmet back on and get back into this fight, I guess.)

Off I went to meet with the pharmacist – Reggie!  Super Hero of our day!!!  He took Shayne’s insurance card and was shaking his head saying, “It doesn’t look like anything we accept.”  He pulled up our account and explained that we have been paying a lot out of pocket for Christi’s expenses.  He explained that five pills of Temozolomide would be $700.00 and the 10 days of irino would be $11,000. (The third drug:  Cefixime is very inexpensive giving the scheme of things.)  I witnessed this advocate literally go to battle trying to sort it all out and get some help on our behalf.  He told me to come back in about an hour and a half because it would take that long to even get the drugs.  In the end he arranged for her drugs, packed them on ice, explained the many directions regarding the administration of this chemo, took my credit card and even ran that himself too.  What a Godsend!  I have always been impressed with this remarkable man taking care of Christi’s drugs, but to go through many hoops and to keep persisting and trying to figure it all out – all the while working in a windowless room, was truly an act of God!  May God bless this wonderful, dedicated man!

So with over $11,000 worth of chemo (makes the $712.00 flight seem cheap, eh?) in a plastic bag we ran off to catch the train to the airport and had a great flight home – despite many tears I shed.  Christi innocently played her game boy, 20 questions and read.  Upon our return to the long term parking lot she said, “Mom check to make sure we don’t have any flat tires this time.”  Boy, what a memory!  And we didn’t!  Whew!  She slept soundly until Shayne carried her into the house in his strong arms with his red eyes and countless tears and we woke her up to get her first medicine in her.  He loves her so much!

Arriving home I soon witnessed Christi’s 3rd grade state achievement test reports that Shayne received at Open House.  To see them myself on this day was so heartbreaking.  You see, she scored a PERFECT 493 points on the 3rd grade reading test (It wasn’t dropped down for her young age, it was by grade level.) and her math score was also incredibly impressive at 461 points (Advanced, highest level).  It was just like rubbing our face in mud.  Why is this happening to this brilliant young lady who would change the world for the better if only given the chance to live?  Perhaps she could be the one to find a cure for all cancers one day.  She LOVES science!

Today she started the chemos.  It’s a lot to get through right now, but soon I’ll have “Chemo Nurse” listed on my resume (hee hee).  I feel sooooooooo bad for her having to endure this all.  She’ll be on the chemos for 2 weeks, get one week off and repeat the cycle.  At the end of September she’ll return to CHOP for disease evaluation and next treatment plans.  Of course, all bets are off if she’s in pain.  Her blood counts will be checked from her arm on a weekly basis.  Side effects include possible:  low blood counts, diarrhea, nausea, vomiting, fever, loss of strength, and hair loss not to mention all of the stunted growth and reproductive issues that come with nearly all chemos.  Oh, this stinks!

If you have children, please remember that they are truly gifts and I hope that at least once a day, the love that you feel for them takes your breath away. Tell them how special they are and how much you love them. Remember how lucky you are to have them even when they me be out of control or trying. I ask this of you.

With a broken heart and a tremendous loss of hope,

Christi’s Joke:  She’s still whipping them off; I just didn’t ask or write any down this time.

What’s Next?  Chemo (Irino and Temozolomide and Cefixime) for the next two weeks then she’ll get one week off.  If all goes well that is!  When I arrived home last night and witnessed Shayne’s blood shot eyes, he said he wanted to make plans for us to go horseback riding this weekend.  While we’ve never done this Christi is enthralled with horses right now and given the situation it sounded like a game plan.  He found a place close to where we need to be for his family reunion, so he said he booked a bed and breakfast.  Oh, wow!  Won’t that be a treat I said!  I asked him, “What do the rooms look like?  Do we get our own bathroom?”  He said, “Oh that’s not the problem.”  I laughed and he responded (through an on purpose / muffled cough “We’re sleeping in a horse barn”.  I nearly giggled myself off of a chair knowing he was serious and knowing the girls would be loving all of that.  He responded, “It was cheaper that way.”  Oh, what a hoot!

Please mark your calendar and consider giving the gift of life:

Christi Thomas Honorary Blood Drive

at Hospice

Friday, October 21, 2005

Shayne’s Post to our NB Support Listserv Group:

Today was one of those days that only you my fellow travelers can truly understand.  Christi has had drastic disease progression from head to toe.Maris feels that it is essentially, at this time, confined to marrow space-it is very extensive.  We are, as you can imagine, saddened, heartbroken......nonetheless we trod on, aching, with a new plan.  At this time we will do a round of irinotecan and t.  A gamble so that Christi can attend the first week of fourth grade next week.  After that...who knows right now. We have been living in this uncertain world of Nueroblastoma for so long now that I feel as though I can not even count on the sun being up in the morning.  My poor wife finally got me to agree to attend to some deferred maintenance around the house.  I kept saying "honey, you will not even notice that if you have to go back and live at the RMH"....anyways I did give the go ahead to fix the roof today despite everything.  Funny only leaked when it rained.

Angela, will be home tonight from CHOP via air.  She and I will no doubt sort all of this out upon her arrival.  Unfortunately, she had to attend to all of this by herself as she and Christi made the trip alone.

Strength to all of you,

Shayne’s email to me while at CHOP:

These seem to be the hardest days for me when the news is spoken out loud.  It is the same feeling every time and does not get any less difficult. Diagnosis in Columbus , failure in New York , Philly-last month and now. This awful empty feeling of numbness when the words come from the is really indescribable to me.

No one should ever have to feel this way. Sorry I did not make this trip with you.  I should have....somehow I just thought we could make it through unscathed.

On a lighter note.  The sink leak is fixed and I found the roofer who said he could start soon to fix the leaking roof. As of yet I have not heard from insurance. I’ll call Reggie.

Love you..always,

My email to our cancer friends:

Dearest Cancer Friends,

It was confirmed.  Our worst fear has come true.  Yesterdays’ scan reveled that despite having no outward symptoms, Christi’s disease has progressed like a freight train.  She has new active disease – nearly from head to toe:  skull, arms, ribs, spine, pelvis, femurs, knees.  Her LDH level nearly doubled in just 7 weeks. 

This time I knew I had to tell Christi as I felt myself ready to break down just outside of the scan room so we sat down on a hospital bench and I told her that her cancer had come back and in many different spots and that Dr. Maris would take her off the ABT and give her some different treatments to try.  With the grace of a prima ballerina and the bravery of a soldier she said, “It’s okay Mom.  I’ll do it all again.  I’ll do anything – even radiation and antibodies.”  Shayne knew he needed to tell Shayla back home that Christi was going to get really sick again.  Sweet, little Shayla (now age 6 ½) asked Shayne if this medicine was going to work better.  Shayne could only respond, “I hope so.”

So today we will begin salvage chemo (irino,temador & cebrix – Phase I agents from the St. Jude study) hopefully as a bridge to get her to another Phase I trial, but Dr. Maris gave us no false hopes and we fully know the score.  He told us that if we just wanted to take her home and manage her pain that was an option too.   We do; however, want to try to fight it even though we know what we’re up against.  When he asked what was important to us, we both responded (with Shayne via speaker phone back home) that Christi attending her first day of 4th grade needed to happen for all of us.  So Christi and I flew back home last night and Tuesday she’ll go to her first day of 4th grade – with a very special friend as her teacher (My colleague of 17 years, a wonderful babysitter for the girls when I get in a bind and Shayne’s 4th grade teacher too!  AMAZING!).  Thanks for your love and support.  As you know, we are heartbroken and crushed and appreciate you all!  THANKS!  Here’s wishing you the very best.

Love, Angela