Saturday, August 7, 2004
Good morning all! I'm certain some of you have been checking your computers for the update on Christi's trip to CHOP that I promised you as soon as I arrived home, but we arrived home after midnight and I don't know if I've ever been so tired in all my life. I literally cuddled a moment with Shayne and then went to bed while Christi scooped up Buttercup - who sleeps at the foot of her bed nearly every night and cuddled with her cat she missed while we were out of town. The above was shared with me by a Jewish friend who tells me that is what they in the Jewish faith say when something wonderful occurs. Christi is still with us, bravely fighting and feeling great! We count our blessings every day! Mazel Tov! And thank you, Lord!
Tuesday we enjoyed going swimming in Toledo with Christi's good school friend - Theresa, and my old school friends Betty & Linda and their lovely families. It's just another thing I love about the Seneca East Schools- so many of us still keep in touch. I still have great memories of getting to stay overnight at the Arbogast's home when I was young! (This very special and wonderful family has 12 - yes twelve, daughters!! Very cool!!) We had a joyous day at Betty's home and I hope our kids all get together some day with their children too. While my headache due to the stress never cleared, spending the day with friends helped to take my mind off of what was coming in the days ahead. First lack of sleep and then headaches soon arrive has been the pattern my body seems to take in dealing with all of this. I learned at the NB conference that it's actually PTSD (post traumatic stress disorder) as I have been exposed to all of the conditions and have most all of the symptoms, but I'm dealing with it fine and wouldn't consider taking any medication anyway. Shayne questioned why diet and exercise were not mentioned at the conference as healthy ways for parents to help themselves relieve stress. I shall continue on with a positive outlook and hope (and denial). They're great coping mechanisms I've found!
After I had learned of Alex's funeral arrangements, I started trying to figure out how to get out to the suburbs for Wednesday night's visitation. Cabs, drivers, rental cars - what best to do?! A sweet gentlemen from the US Mint offered to drive us and I readily agreed and was so grateful! Then Cierra's Mom, who just lost Cierra to this beast in March and whom Alex dedicated her book to, said that she'd pick us up at the Ronald McDonald House; she was going anyway and would love our company. Therefore, I figured we should go with sweet Shannen and not put out Tim and take him away from his family so I emailed and canceled with this unbelievably kind man. (Thanks, Tim! God's people are good!)
Wednesday morning the Werlings arrived and whizzed Shayla off to the movies with the three Werling girls and Christi and I soon drove back up to Toledo (in a downpour) to catch our flight- with some kind help from a special NYC friend!! (Thanks, Bill! May God richly bless you one day for your kindness!)
After driving 1 1/2 hours to the Toledo airport in the pouring rain (tropical storm - named "ALEX" - how appropriate! I kept thinking little Alex Scott is having one final laugh over this one!), having our flight delayed, missing our connection in Chicago despite Christi kicking off her flip flops and carrying them as we literally ran to the gate where we watched the door shut and later saw "our" plan to Philly back up and leave without us, learning the Ronald McDonlad House was completely full and having to book a hotel room for two nights instead, being in a "holding pattern" over the city of Philadelphia for over an hour, having our ride to the funeral home go on without us because we were so many hours late and were unable to communicate with Shannen while on the plane, having to rent an expensive rental car despite my request for "I really need the cheapest, smallest car you have, please", getting terribly lost on tiny and windy traffic filled roads in the pouring rain trying to get to Alex's visitation / wake, mourning the terrible loss of young life and tremendous potential as Alex's cold and lifeless little body rest before us, my tears poured many times on Wednesday - yet we made it safely to Philly! "That's good news!" as Christi said herself.
It appeared that everything that could have gone wrong on Wednesday did, yet when I carried a sleeping Christi into the hotel room close to midnight after returning from the funeral home (Yes, I got lost on the way back too! Imagine that!) I could only thank the Lord for giving me this beautiful gift - Christi! Mazel Tov!
Alexandra Flynn Scott
Many of us knew Alexandra Scott, the brave little 8 year old girl from Philadelphia who had neuroblastoma and who raised over $900,000 for children's cancer research. We had the honor of knowing and becoming friends with Alex and her family. It was our pleasure and good fortune to know and fall in love with the Scotts! Life dealt the most "bitter" of lemons to Alex, yet this little girl captured our hearts and the hearts of so many others as she made out of her life the sweetest lemonade. She inspired us with her ability to live life to the fullest and to help others while she suffered so much herself. In doing so, she humbled us. Her legacy will live on; she will never be forgotten. Our deepest sympathy and thoughts go out to her family at this most painful time.
Alex was independent, creative, funny and spunky. She liked to spend time reading, drawing, knitting, working on crafts and playing solitaire. She liked spicy foods, the color purple, karate and attending school at Penn Wynne Elementary. Alex received many prestigious awards and was featured in many magazines and TV programs - spreading the word about this deadly childhood cancer. She would have liked to be remembered, not for her suffering, but for her strength. Not for the things she wasn't able to do, but for the obstacles she overcame. She taught us that through selfless love and with courage and determination one person can truly make a difference in the life of others. Her legacy will life on forever. In lieu of flowers, donations can be made to Alex's Lemonade Fund for Pediatric Cancer Research at 333 Lancaster Ave #414, Wynnewood, PA 19096. And like her sweet Grandmother from Connecticut told me at the funeral home, Alex never benefited from her own work, but hopefully one day other children will be cured because of all she did for others through her lemonade stand. And some of Alex's family and friends have followed Christi's journey so they were pleased to see Christi there - and to be doing so well. I think this special girls shared so many special traits; I think they're both amazing!
Alex looked absolutely perfect and lovely - all dressed up in a bright and colorful dress with her "lemonade hat" and her pretty painted purple finger nails -a trademark! (It was Alex who informed Christi that little girls are allowed to grow their finger nails long too. Thanks, Alex! Smile.) It was terribly painful and absolutely gut wrenching to see her in the tiniest coffin. I just kept thinking how unfair life is! Look what this little sweetie did in just 8 years - captivating and moving a nation! I'm willing to bet in just 16 years of life she would have changed the entire world for the better!!! When Liz shared of her final moments, she told me how the nurse told her that Alex would go when she was ready and Liz thought, "You know, Alex. She'll never be ready to go." Yet, when Sunday afternoon came, as she stared at a stain glass angel she took her final breath while holding Jay and Liz's hands. And my tears of lemonade have been falling ever since. ANGEL ALEX...from hero to legend. And hope is what I have, that one day through the strides that Alex made, that we will find a cure for this monster and all the other ones lurking under our beds, in our closets and in our walls. Rest in peace, sweet Alex - forever eight, forever great!
Many have asked how Christi handled Alex's death, but I don't think I really know - yet. While on Sunday when we told her that Alex had moved on to Heaven because she had gotten really sick recently her eyes glazed over as you could literally see her wheels turning - deep in thought. At the funeral home, she turned downright silly (or perhaps just normal but to me she really stood out - everyone was somber and quiet and Christi was running circles around the people she knew and hugging and smiling - a lot! I felt terribly guilt in front of Shannen and Liz as here is Christi with the same beast and she's still alive while their daughters are not. So sad and painful this all is.) Perhaps someone who reads this will email and tell me if Christi was adopting a coping strategy or what. Later, as I was talking with Liz and Angel Cierra's Mom (whom I feel so bad for as she stayed around the airport in her vehicle for the longest time waiting and waiting for us wondering where we were before finally going on as not to miss the visitation.) I noticed that Christi was right up with Alex's body - her face literally inches away from Alex, really taking it all in.
On the drive back to the hotel, I again asked Christi if she wanted to talk about our experience at the funeral home, or dying, or anything, but she didn't and she reminded me that both Daddy and I already told her that any time she wanted to talk about it or ask any questions she could. My further probe was a comment about how much Alex looked just like herself and I wanted to say, "OK, Alex, joke's over! Get out of that casket and back into your wagon now." Christi responded, "I know! I got really close to her, Mom, and it even looked like she was still breathing a little bit." Christi had a nightmare Wednesday evening - which I don't know if it was related to our experience or not. She rarely has bad dreams, but she told me that hamburgers were chasing her and she knew it was a dream and kept yelling, "Mommy, wake me up!" but I wouldn't wake her up. (She really never called out. I'm a very light sleeper and would have known if she had called for me as we were even sleeping in the same bed.) She attributed it to eating hamburgers recently.
At 7:30 the next morning, I sat in the waiting room at the hospital for Christi's name to be called and I kept glancing up from my newspaper waiting to see Liz pull Alex up in her wagon. Then I turned a page in the USA today and there was a full color page ad from the great folks at Volvo dedicated in memory of Alex Scott - their hero. I broke down crying - realizing fully I'd never meet Liz and Alex there in the waiting room again like I have done so many times. I was thankful Christi was on the other side of the room checking out a cart full of books as I tried my best to wipe the tears which just kept falling.
The rest of the day went fine. I won't say we didn't run from appointment to appointment and then "hurry up and wait" some more, but Christi is always a great sport and therefore everything went just fine. She is nearly always happy. I got a lot of reading done. My disappointment was when one of the oncologist did one of Christi's exams and hit the little hammer on her knees to test her reflexes and again she didn't kick out. The doctor said to the student with her, "It's because she's had so much chemo." (I know she isn't getting through this unscathed and it was just another ugly reminder of all of the damage that has already been done to my precious little gal.) My highlight of the trip was getting to catch-up with our old MSKCC friends from New Jersey!! Sharon is as beautiful and sweet as ever! Even though we couldn't get a room and stay at the Ronald House thanks to the sweet gentlemen who offered to drive Christi and I to Alex's funeral, Tim dropped off a package for us at the Ronald McDonald house. Therefore they called me on my cell phone to tell me there was a package for us to pick up and that we could stay for dinner before going back to the Sheraton - so it was perfect! We got to enjoy a wonderful (free) meal with the Romanos and Christi was able to play a bit at the Ronald House which she desperately wanted to do! God is good!
Friday morning she watched "Holes" while participating in her MIBG scan. Her bare feet were taped together so tight, it brought tears to her eyes because it was hurting her so much. Next time she will wear socks, but she only had flip flops this trip. I was thankful that her MIBG scan looked perfect to me - couldn't see a shiny spot anywhere (except for the normal spots that always light up - glands, bladder, mid section parts). At 11:30 we were waiting in the playroom when Dr. Maris came out and said, "What are you doing now?" (Well, talk about making your heart fall on the ground. I had no idea what he meant, but I thought I'd better start talking!) I said, "I thought we'd get the test results from you and if this news was good we'd get the next round of ABT and fly home about dinner time." He said, "Oh, then you don't need to rush off. Good. I don't have the bone marrow biopsies back, but I will at 1:00. Go grab lunch and meet me back here at 1:30." (Of course I'm dying by now!) So I piped in with, so the bone marrow aspirates are back? Are they still positive?" He said, "The CT is fine, the MIBG will be here in five minutes. One of the aspirates is negative, the other is positive, about 3-5% of neuroblastoma." I exhaled and said, "Well, that's about as good of news as we could get right now. Thank you! We'll be back at 1:30." Christi wanted to finish coloring and as I was packing up all of my books Dr. Maris poked his head out to say MIBG is fine too! YES!!!! Off we went for lunch. I breathed a bit easier assuming that things weren't any worse. As I've been saying for many, many, many months, we can't hear NED, please let us hear "stable. no progression. no new disease." It appeared things were going that way. Thank you, prayer warriors!!
Anxiously waiting at 1:30 in the playroom, Dr. Maris came out about 2:00 and told us that the biopsies still weren't back, but it shouldn't be much longer. (I knew I had to leave for the airport at 3:30 in order to have time to return the car and make our flight.) He came out about 2:30 and said I could go to room #9. When I opened the door to room #9 I was surprised to see the Romano's still waiting inside!! And Sharon was on her cell phone in tears so I quickly hopped up on the exam table with Anthony in hopes of distracting the boys from Sharon's conversation - not knowing how bad Michael's results must have been. Well, she hung up and told me through tears of joy that two of his neuroblastoma spots were completely gone after his first round on CEP -701! What a pleasant shock! I felt chills and wanted to cry myself, but didn't want to make this cancer thing seem "serious" in front of her boys. PRAISE GOD! PRAISE GOD! It was everything I could do to keep from hugging Michael - he's relapsed TWO times with this beast! Go, Michael! They don't call him the "Comeback Kid" for nothing!! There is still the spot in his arm, but I couldn't be any happier!!!!!
Dr. Maris walked in and was surprised to see Sharon with me. (She didn't know where to wait for his medicine, little did we know I'd soon join her in yet another waiting room - praise God!) Dr. Maris sat down and said that they do the aspirates because they're easy, but the biopsies are so much more important in bone marrow testing. He said that things are no worse. (YES!) One biopsy shoes less than 5% neuroblastoma cells and the other shows a suspicious cell or two that they are putting special stains on to determine if they are neuroblastoma cells or not. (Don't need to waste your special stain, I'm certain they are! hee hee). He reminded me about sampling and just because this news was really good and not showing much disease it doesn't mean that there wouldn't be a lot of neuroblastoma cells showing if a different sample was removed from her body today. (No one's dashing my hope. I'm still taking this as good news!) Her urine marker tests will be back in a few days. Dr. Maris said that we won't be doing any more CT scans. They've been negative and unless we think there are any problems or are going to do a full work up there is no need to do them. (YES! Saving Christi from having to go without food - again, and from having to drink that yicky CT contrast not to mention less $$$$$ and time. Yahoo!) Her ECHO (heart shortening factor) was down a bit to 34% heart function - where it had been 39% in May. This ABT can cause heart damage, we've seen other children removed from this study because of it but she's still in the normal range. Unless she goes below 27% she can continue. Under 27% and then she'd be removed from this trial.
On Thursday they drew six HUGE tubes of blood to send to Houston to get started making her vaccine. Dr. Maris told me that IF they are successful in growing her T cells in 3-4 months we're going to have some tough decisions to make, but that he would also give his recommendation. I said, "Well, we don't want to remove her from the ABT if this is working. Can't they just freeze the cells and give them to her when her disease progresses or her heart function prevents her from participating." Dr. Maris said, "Good question. I don't know, but it does seem like they should be able to freeze them and then thaw them when needed. I'll check with Dr. Russell and let you know. Dr. Russell explained that it's terribly expensive to do the next step and that they need a firm commitment from the family before they go to the next step. (I swear I heard the one million dollar figure at the NB conference during her presentation, but that certainly does seem high.) Dr. Maris is all about back up plans so he thinks we're doing exactly the right thing by getting this started and hopefully never needing it. I signed off on all of the consent forms and her blood was shipped out Thursday as they don't like to ship anything on Fridays; this also allowed for her blood to be drawn out of her port since it was already accessed due to her other tests.
Her blood counts on Thursday were: white 2.9, hgb. 9.5, platelets 84 with an ANC of 1,421. Because of her low blood counts, which have continued throughout all three cycles of this ABT, Dr. Maris decided it best to lower the amount of this drug from 125 mg. to 100 mg. thinking she won't have to be off of the drug so long waiting for them to recover to begin the next round as well as the danger of infection with the low blood counts that she has amazingly been able to avoid (Praise God!). She's been having to go 21-23 days before starting on the chemo again and this nasty disease doesn't just sit and simmer without treatment it boils and roars. He also explained that what they're finding out in research is that they used to think with cancer treatment to come on hard and strong to kill the cells, but what they're discovering now is perhaps it's better to use low dose / constant treatment to be more effective. Regardless, Christi will be happy that once her counts are high enough to start Round #4 of ABT, she'll only be swallowing one pill - not two. Dr. Maris went on to explain that this drug isn't like Cytoxin (a high dose chemo she's had) where it either works immediately or doesn't, he believes that this ABT works gradually over time. He went on to say that one of his patients has been on this for 24 cycles and it took 14 cycles before the child's bone marrow cleared and it's been clear ever since!! He wants to get Christi on a solid regular schedule of 21 days on, 7 days off and wants to see her for tests/scans after the second round. (I assume if her blood counts recover and if she can start again this Friday, this trip back to Philly will be mid-October and Shayne will be bringing her then since I'll be back to teaching.) So, I headed out to wait with Sharon for Christi's ABT as I knew time was ticking on getting back to the airport on time. Reggie (the Pharmacist) is good! We were soon hugging the Ramono's good-bye and heading on our way!
The flight home should have been joyous as we really couldn't have received much better news - the news of NED I know we will most certain never hear, yet I couldn't be joyous. Not only did we just come from saying our final tearful good byes to Alex, but I had just learned that Simon had also died hours earlier. I kept thinking back to last summer when Christi and Simon played Pokemon on the terrace on top of the Ronald McDonald House in NYC and now he is forever gone. Forever seven - earned his wings for heaven. (Simon and Christi have birthdays just five days apart.) My heart breaks for his sweet family, especially his sister (nearly Shayla's age) having lost her only brother, her only sibling. I'm so very sorry. Messages of condolence can be left in his guest book. His web site is also in Christi's Clubhouse. His awesome and brilliant Mom wrote:
Oh, brave, sweet boy, Simon. Our nurses tell us they can't believe how long he held on and how he fought until the end. I think he was trying to go as gently as he could on us, disappearing slowly instead of suddenly. For 8 days now I haven't been able to have a real conversation with him or see the spark of sight in his eyes. And now we must learn to live without all of him. So very sad to lose him and so deeply grateful to have been his mom, Mary.
Earlier this week I received a touching email from our NB fighting friends (and our hometown friend Kaye and Chris's friends too) from Oklahoma. Lydia wrote about our dinner together in Chicago not long ago: Angela, I have to tell you something Christi did while we were at dinner. When we were walking around the streets, Christi looked at me and said, " Who are you?" like she was trying to figure out why I was around and knew their names. I replied "I'm Ms. Lydia. I know your Mom and Dad because my little boy named Nick has Neuroblastoma just like you." Christi said, " In that case let me give you a big hug and a kiss" and she began to hug me and give me lots of kisses. I thought it was funny because she was rather cold to me until she heard about the NB connection. I wonder why that made such a difference. Maybe she knows that we mothers go through a hard time too. I don't really know, but I thought it was very sweet.
And if she didn't know what we mothers go through, she soon learned a profound lesson that no little one (or big one for that matter) should ever have to learn - dealing with the death of your child. Shannen, Mom to Angel Cierra, who we became friends with at CHOP after many email exchanges for months before we started treating there, arrived at the Ronald House.
My thanks to all who cared for Shayla while I was out of town with Christi! (Werlings, Kristin, Doug and Caroline, Bowermans - THANKS!)
With tears of joy - yet sadness,
PS: So sorry for all of the typos/mistakes, I knew some would be quite anxious to hear Christi's medical news and wanted to rush it right out. Christi and Shayne are off at the blood drive at Hospice and I need to get up there soon as well as get the girls to little Donna's 8th birthday party!
What's next? Blood drive / lemonade stand at Hospice today and little Donna's birthday swimming party! Yahoo!
Blood counts and visit with Toledo Oncologist Dr. Jasty Wednesday. (Dr. Maris said if her counts are high enough don't get them checked on Friday - they may go down, just start the chemo on Friday!!!)
Christi performs her cheerleader routine at the Attica Fair on Saturday, August 14th about 12:30 PM.
Open House at school August 17th. (Yikes! I best have my classroom ready by then. I've been working and working both there and at home, but I still have a long way to go yet!)
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Shayne & Angela Thomas: email@example.com