Wednesday, July 6, 2005

This journal entry is dedicated in loving memory of Jay Barnett.  We had the privilege and pleasure of living with Jay and his wonderful Mother our entire time at Ronald in NYC and grew so very fond of them.  Diagnosed at age 13, Jay fought a brave and courageous 3 ½ year battle with neuroblastoma earning his Angel wings in June at the young age of 17.  Jay touched our entire family’s life in a very special way.  This funny and compassionate young man used to explain to me how Christi would feel during different procedures since he could give an accurate description and Christi was just five at the time.  (Oh, how Jay loved being put to sleep for his bone marrow testing!  Sooooooo funny!)  My favorite memory of Jay happened after I had used a free “hair cut and style” coupon a volunteer had given me.  A fancy NYC beautician styled my curly/frizzy hair into a very straight, sleek, fashionable style (It didn’t look anything like me!  Smile.).  When I walked back into the Ronald House, Jay was standing there and could barely get out, “Is that a wig?” before bursting out with that tremendous laughter like only a teenager can do – totally making my day!!  Jay is now joking in heaven and singing with the Angel choir finally cancer and pain free.  He will forever live on in our hearts and minds.  Our prayers are with his wonderful Mother, Virginia.  Rest in peace, sweet Jay Barnett. 

NYC
You're standing room only
You crowd
You cramp
You're still
The champ
Amen For NY

(“NYC” from the musical Annie)

Many times during our 9 months of treatment at MSKCC in NYC I fantasized, hoped and prayed that somehow, someday we would bring Christi back to NYC a cured young woman enjoying the city she loved so dearly as a very ill five year old.  Well, she may not be cured, but we brought her back in much better condition then when she left and she thoroughly enjoyed her visit in the Big Apple!  It was a dream come true as she was so strong walking down the city streets unlike she was able to do in 2003!   We praise Him! “Trust in the Lord God always.” (Isaiah 26:4)

My last journal entry was written rapidly, and in sheer terror, most likely not making any sense.  Now that I’ve calmed down a bit, I’ll back up a bit and try again.  Here goes:

On Saturday, June 24th, we left for our summer vacation directly from the girls’ performance of “Sleeping Beauty” as part of their camp experience at the Ritz theatre arriving in New Jersey in the wee hours of the morning.  On Sunday, we went straight to Brooklyn to visit with the wonderful family that we became friends with in NYC while Shayla and Veronica attended preschool together on the Upper East side of Manhattan .  They picked up exactly where they left off – it was truly priceless!  We had a wonderful day with this beautiful family, but the time went by too fast!

Monday was the day we had planned to visit with the great folks at MSKCC and at the Ronald McDonald House.  Christi was all smiles that morning as I brushed her long hair and she said, “I’m just so excited to see Gail and Anne Marie.”  I had to blink tears away many times as it felt tremendous to see everyone; it was dreamlike.  (And I think it may have been equally therapeutic for them to witness Christi looking and feeling so well right now after all of their hard work they all spent on her – nurses, volunteers, social worker, teacher, doctors, staff, clowns, parents, etc., etc.  An amazing team exists at Memorial.)  One sweet staff member said, “This is unbelievable!  This just doesn’t happen.  When the getting’s good – no one comes here!   We rarely see this!”  I was also able to catch up with some sweet fellow neuroblastoma Moms that I keep in contact with, but truly didn’t have enough time to really visit like I had hoped.  I was blown away by the gorgeous new pediatric part of MSKCC; it’s simply stunning and gorgeous.  Those great folks deserve it; they work miracles there!  Next we had a great visit at the Ronald McDonald House. 

I knew our little friend – Ryan Connolly, diagnosed four weeks after Christi, was too ill to visit in person at Ronald so I just called their room and talked with his awesome Dad instead.  Later I left some Ballreich’s chips (made in our hometown) outside their Ronald room.  While I could hear sweet, precious Ryan crying and moaning in the background I never really imagined he was so close to death.  This cherished, precious, only child of Pat and Linda was called home days later.  I know this special family would be very appreciative of your prayers.  Ryan’s site is in Christi’s Clubhouse if you’d like to leave a message of condolence.

Tuesday was another jam-packed, busy day spent visiting.  In the morning, we had a great walk through Central Park and met Bill at “The Boat House” (a splendid restaurant) for lunch.  This compassionate, intelligent man is a gem – a rare and precious find!  Our friend from the Met (Metropolitan Museum of Art) met us after lunch and drove us up to the Cloisters where we enjoyed taking in the medieval art; Christi was especially fascinated with their herb garden.  Next it was on to Columbia University where we had a small dinner party at a real NYC apartment, very cool!  The next day Shayne said something like, "Shayla, did you know that you were at a New York dinner party with an Art Historian, a Physicist, a Jazz Musician and a Sculptor?"  Shayla looked shocked and said, "I was?!"  and Christi piped in with "and a future psychologist" - regarding the teenage daughter.  It was precious!  Thank you, New Yorkers!!!!

On Wednesday, our final day in the remarkable city, we decided to take advantage of the free art museum passes the Marks gave us on Sunday so we went to Moma ( Museum of Modern Art ) as soon as it opened.  It is absolutely delightful!  Later, we went to the Central Park Zoo – which was smaller than the girls had remembered and in the late afternoon, we went to the Met where much to our surprise, we discovered Shayla had remembered a lot from her preschool days when Shayne would often take her to the free preschool programs - “Start with Art”.  (“Can I see the bear statues next?  Let’s go to see the little fish in the stream.  Where is that one painting?” etc.  Remarkable!  She hadn’t been there for two years and she had just turned four in the spring of 2003.  Amazing!)  Finally, in the midst of rush hour – ahhhhh, can ya tell we’re from Ohio ?!!  we tried to leave the city and drove down to Philadelphia – the real reason for our trip to the east coast.

Thursday and Friday consisted of her full work up of tests/scans/procedures at what has been named by many as “the Best Children’s Hospital in America” – the Children’s Hospital of Philadelphia (aka CHOP).  Thursday afternoon we were able to meet up with Tim who treated us to the new US Constitution Center – an amazing museum/theatre!  We could have stayed there MUCH longer.  Christi’s favorite part was putting on a Supreme Court Justice robe, sitting on the bench and reading the court cases – even though she strongly disagreed with the flag burning decision.   That evening Tim drove us to his home where we were able to meet his beautiful wife and daughters (ages 6 & 8 – interesting, eh?!) and where we had a fabulous dinner and engaging conversation – taking our minds off of what the testing results would be the very next day at the hospital. 

Just to share a funny story:  We arranged to meet Tim Thursday afternoon at the United States Mint.  Soon after Christi and I were in the entrance door, I noticed alarms ringing.  Never imagining that CHRISTI was causing the panic, I patiently waited until I heard a Police Officer say to the lady in front of us, “Did you have any medical procedures done today?”  Oops!  Christi had just been injected with a radioactive isotope and SHE was setting off the radiation detector.  Yikes!  Nothing like causing a little excitement – Christi!!  Christi thought it was funny and told the MIBG folks at CHOP the next morning before her scan.  They said that was a new one! 

We checked out of the Ronald House on Friday morning looking forward to going back home and all was going well – until 2:00 PM when we were sitting in Dr. Maris’ office (along with three other adults, always a bad sign!).   Dr. Maris told us that the “artifact” from April’s MIBG scan had grown in intensity and that they needed to do more testing to determine what exactly this worrisome new finding was all about.  He was surprised that her bone marrows were “the best ever” in terms of containing the least amount of disease, ever.  (He said that the biopsies were negative and that the aspirates were showing just 1% cancer on each side.)  Soon it became a whirlwind of activity with the social worker trying to get us a room back at Ronald (again) and the off to CT and MIBG for waiting room waits (smile) and testing procedures.  Christi handled it all like a champ.

After the 2nd MIBG scan and the CT (CT was normal) we huddled in a radiology reading room with Dr. Maris and two radiologists who showed us her MIBG scans from Jan., April and July.  The artifact isn’t showing at all in January, is barely there in April and is intense now.  Ugh!  It also looks big to me.  Dr. Maris said that it wasn’t looking like neuroblastoma unless it’s in a bone (It’s like a straight line.) however, if it’s not neuroblastoma – they don’t know what it is.   We walked with Dr. Maris back upstairs. 

While Dr. Maris was talking with us, I went numb.  I couldn’t think of an intelligent think to say, my body was cold and it was like a big cloud took over my mind.  I felt terror and panic.   I looked up to my wonderful husband and saw fear in his eyes too.  I saw compassion, love and heartbreak knowing fully what this kind of news means.  Our minds were whirling and our hearts breaking.

Exhausted, we returned to Ronald – where I wrote the journal entry from a computer at the House while Shayne and the girls played a video game in the living room.  We woke up late on Saturday and the girls played in the room until noon .  That was the first we could even think about getting out of bed.  Finally, at noon , we went down to the kitchen to fix our lunch when I saw a sign “Free Phillies vs. Atlanta baseball tickets.  Game today at 1:20”.  Aha!  Then – we had a plan and immediately started feeling better!!  After lunch we were in the van driving to the ball park.  Shayne said to me, “We’re always better when we’re in motion aren’t we?”  And I had to agree.  At least we were in charge of something!!  So we filled the rest of the four days we had to wait for the MRI scan with lots of things.  These were the highlights:   shopping at King of Prussia Mall (WOW!) going to Philadelphia Park and watching horse racing, the girls getting to go horseback riding, and going to a water park.  Shayne also took some long runs around Philly and I finished my Harriett Tubman book.  Fireworks in the city that started “freedom” would have been great, but we were just too tired to venture out for that – even though the girls wanted to see them. 

Shayne and I also had a chance to discuss some possible treatment options so depending on what the news is we know where we stand on some things.  I also called Gina and Sharon – veteran neuroblastoma Moms and I felt better after speaking with them.  Christi does have stem cells, has good blood counts and this was caught early – all plusses!  (Not to mention the tremendous, “Christi Crew Prayer Warriors”!!!!!) And like another cancer Mom also recently told me, “There aren’t many Shayne Thomas’s around!”  That can only help!  I couldn’t do this alone like some mothers must!  I am extremely proud of Shayne’s tenaciousness and steadfastness through perilous waters of a deathly ill daughter. I fear I would have collapsed under the pressure without this incredible man’s love and support.  I am blessed beyond belief!

Last night we (again) checked out of the Ronald House and went to CHOP where she was to check in at 8:45 PM .  As they were getting ready to access her port, they asked what kind of surgical clips she has inside her body from where her original tumor was.  Of course we didn’t know if they were metal or not.  Finally, at 9:30 they told us that if they couldn’t find out what they were, they wouldn’t be able to do the MRI.  (Oh, my heart sank – another night in Philly and with the Ronald House desk closed therefore unable to get a room.  I couldn’t believe it!)  Shayne said he’d try to get a hold of someone in NYC where her surgery was done.  I called my friend who treats in NYC and CHOP called Dr. Maris and sent a fellow off to find Christi’s records.  Finally, close to 11:00 PM it was determined that they weren’t made of metal and it was safe to do the scan.  Whew!!!!!!!!  We were loaded up in the van and heading out of the city by midnight .  That amazing husband of mine safely drove us almost the entire way home and I finished up the last two hours after sleeping the entire ride from Philly.  So that is the end of our “adventure”.  We do not have the MRI results or the final bone marrows, but we should soon!  I’ll post then.

In addition to our NYC trip, other family highlights of the month include:

*Shayne:  Competed in a Triathlon at Maumee Bay State Park on Father’s day (Swim, Bike, Run – go, Shayne!).

*Angela:  Received a $2,000 grant entitled “Hate Hurts!  Using Books to Breakdown Barriers” which written to purchase books and experiences for my middle school students and language arts classroom.  Yahoo!

*Girls:  Attending Theatre Camp at the Ritz and putting on a grand production of “Sleeping Beauty” – with a twist of the character “Elvis” too!  So fun! 

Thank you for checking in.  I intend to update again as soon as we receive news from CHOP which should be in the next day or so. You’ve gotten us thus far!  We have been richly blessed and are deeply touched.  God bless you!

Christi’s Joke:  Where can you get a three foot ruler?  (At a “yard” sale?)

What’s Next?  Christi is now on day #6 of her 15th round of ABT.  Dr. Maris didn’t want to take her off of it (yet) – but may want to increase her dosage now that her cellularity level is finally “normal” -19 months after her double high dose MIBG treatment attempt.  I continue to be haunted by his comment of “I’m worried.” And “Maybe the ABT has done all it’s going to do for Christi.”  Yikes! 

The Gift of a Child

Dear God,

I thank You for the gift of this child to raise, this life to share, this mind to help mold, this body to nurture, and this spirit to enrich. Let me never betray this child’s trust, dampen this child’s hope, or discourage this child’s dreams. Help me, dear God, to help this precious child become all you mean her to be. Let your grace and love fall on her like gentle breezes and give her inner strength and peace and patience for the journey ahead.

- Marian Wright Edelman

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