Tuesday night, December 2, 2003
The Strength of an Egg
by Juliet Freitag
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albiet flattering,it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes!
If you'll think about it, you'll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid.
Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.
A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock.
It takes a lot more than pure hardness to hold the hand of hope. Parents of children with cancer are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household, going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence.
Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.
Soon after Christi's was diagnosed I read "The Strength of an Egg" and now each time someone sweetly comments on how strong we are I laugh inside knowing nothing could be more removed from the truth. We're not strong at all; we simply have two beautiful little girls looking at us each and every day totally entrusting us with their safety, comfort and care. How could we not try to put on a brave front for our precious gifts from God? They're counting on us - we have to appear to be strong for them. We also find that we draw on strength from all of you wonderful "Christi Crew" faithfully following her journal on her web site and of course from such wonderful, incredible friends and family that continue to keep us going when we get down. I find I often draw on the strength given to me by friends, family and my faith to keep going each and every day of this battle now going on 15 long months. Thank you for your continued support!
Shayne and Shayla arrived about 6:30 AM on Tuesday after Shayne drove all through the night so that the 9 hour drive would be easy on Shayla. At one point, while he was pumping gas, he woke her up to see if she wanted to get something to eat and she responded, "No. I'm having breakfast with Mommy!!!" I was happy to get the phone call to go down and let them in the parking garage. Safe travel is always a tremendous blessing!! It's great to all be together - even if our room at Ronald is tiny.
Christi's MIBG scan on Tuesday went well as there were no signs of any new disease ("just" the same mild uptake in her bone marrow of both femurs) and the sweet, sweet folks gave us a box of yummy treats. It will be most difficult, after these weekly MIBG scans, to now sit back and wait and wait and wait for weeks until she's scanned again while we will start picking up the pace with blood and platelet transfusions wondering what effect (if any) this treatment had on her cancer. Radiation takes a while to work so now the weekly scans (for this Phase I clinical trial) are over and we are not scheduled to scan until December 30th. We pray that she will have a negative MIBG scan and negative bone marrow tests then - no matter how unlikely we're still praying for it!
Wednesday night was particularly difficult being here at Ronald - the night before Thanksgiving as we noticed the staff and volunteers leaving (as they should have!!!) one-by-one and the house soon became very quiet......................very lonely. Soon Shayne left and walked down to the train station while the girls played in the playroom. He came back with four train tickets to NYC!! Yipeee!! If you can't b e with family or friends on Thanksgiving and you're just 1 1/2 hours away from NYC - why not go to the Macy's Thanksgiving Day parade in NYC?! We decided NOT to tell the girls that we were going to New York - because they have been asking to go to Ronald to play in their playroom and Shayla wants to play at Veronica's apartment.
At the beautiful and incredible parade, Shayne called his Grandma who was watching it on TV and I tried to get a hold of mine, but couldn't. I left a message for my Mom and Paw Paw Joe and with Shayla in my arms I said, "We're at the Macy's Thanksgiving day parade in New York." and Shayla inquired, "New York? Is this New York?" I just laughed and said, "I love New York!" Then my phone rang and it was my sister who said, "Where are you?" I said, "You'll never believe this but Christi's ANC is in the thousands and the weather is great (low 50s) so we decided to go to the Macy's parade!" she said "I knew it! We were sitting here watching the parade and knowing you two, you're there!" It was a last minute idea, but a great one! The girls LOVED watching their favorite characters float past them as HUGE balloons. Fond, special, treasured memories were created on Thanksgiving Day 2003!!!! I'll never forget their beautiful smiles and squeals of delight!! What a blessing from above!!
We enjoyed a quick lunch at a diner then just as we were walking back into Penn Station to catch our train back to Philly, Shayla said, "Philly looks just like New York City. Are you sure this isn't New York City? HEY!!!! LOOK!!!! That's the Empire State Building!! This IS New York City!!!!" We explained to her that we couldn't go to Ronald because it was so far away and we had a train to catch. Thankfully, she was perfectly fine with that. On the train back to Philadelphia, Christi finished reading her first biography - a 112 page chapter book "Squanto - Friend to the Pilgrims" while Shayne read the New York Times and Shayla slept on my lap. It was a flawless day trip full of adventure! A blessed Thanksgiving!
We walked back to Ronald and enjoyed a lovely Thanksgiving dinner compliments of Friends of "The first house that love built" with other families who are in very similar situations - mainly with premature babies weighing 1-3 pounds and fighting for each breath. Sadly, I learned that one of the babies didn't make it and died on Thanksgiving and later learned that an 8 1/2 year old who did the high dose MIBG here for his neuroblastoma at CHOP this summer also passed on Thanksgiving after a horribly painful and wicked death which he fought to bravely to the bitter end. It provided for more questions than answers for the Lord above. It was also so sad wondering how our friends were doing with their new Angel babies no longer at the dinner table with them here on earth.
Even though we longed to be home, we were most thankful to all be together on such a special and blessed day! During our traditional "What are you thankful for?" before we ate on Thursday, Shayla shared that she was thankful for "all of the good things in my life" and Christi said that she was thankful for "school". We also gave thanks to the wonderful military men and women who are also away from their homes, working tirelessly to protect us and to keep our country's great freedoms. Thank you!
Friday morning it was back to the hospital where they were really busy - probably due to the Thanksgiving holiday. After our visit - which lasted hours, we learned that there were no surprises as her blood counts were (again) down to Hgb: 8.6, white 3.4, platelets 24 with an ANC of 2,516 - but she just squeaked by without needing any transfusions. Whew! Shayne tried to donate blood on Friday so that it would be ready for her this week, but we learned what a difficult process direct donor blood products appear to be here (unlike NYC where he just walked downstairs and had his blood donated to Christi). Of course he'll work through the system, but he found out he needed to wait until Monday - so off he went, in the rain, to the gym a few blocks away. (He's been working out about three times per week and it's been great for him! The gym he located is in a bad part of the city, but he doesn't seem to mind.) The girls and I enjoyed watching, "The Parent Trap" video and then we critiqued the beautiful art in the Ronald house (What colors do you see? What types of lines were used? Tell a story about the picture.) Very fun.
Saturday we spent the entire day hanging out at the house. The girls have met a 7 year old playmate from Arkansas who has a little brother born months too early. They have really enjoyed playing with a new friend while we've enjoyed getting to know her sweet parents. God be with sweet baby, Cole!!
Sunday, November 30th was our 12th wedding anniversary. We went to church and then to see the great masterpieces of the fine and decorative arts at the Philadelphia Museum of Art. Definitely a feast for the eyes and the girls enjoyed sketching. Shayne had been talking about imitating "Rocky" and running up the stairs ever since we arrived in Philly so he and Christi took off humming the Rocky song as they ran and ran to the very top!! Shayla and I walked and slowly at that! (smile) Little did we know that Christi's hemoglobin would be down to 7 and yet she still ran up those stairs on Sunday! They couldn't believe it at the clinic the next day! Also, on Sunday we reflected back to one year ago when our dear, sweet friends stood out in our front yard when we were in isolation - holding Happy Anniversary signs and bringing us food and much laughter!! We've been so blessed and fortunate to have great friends battling right along beside us! Thank you!!
Monday's blood counts showed the falling trend continuing. Transfusions were needed of both whole red blood and platelets as her counts were (again) down. This time to Hbg.- 7.5, white 2.2, platelets 16 with an ANC of 1,926. I forgot how many hours are involved in the transfusions process (Thankfully, she hadn't needed any transfusions since March!) but Christi handled it like a champ making the best of it - reading, calling Aunt Tina, watching TV and beating me at Candyland and Yathzee
Shayne and I had been doing a ton of soul searching and trying to gather input regarding Christi's stem cell infusion scheduled for today. We had decided not to make a decision on whether to let them give her stem cells back until we had Monday's blood counts in our hands. Well, the strangest thing happened, Dr. Maris just happened to be walking down the hall. He stopped and said, "She's looking as normal as always." (She was sitting in the waiting room with her nose in yet another chapter book. Her new hospital teacher "Joan" is keeping her busy with lots of great, reading level appropriate books -awesome!) I know Shayne hates to catch people in passing to discuss something (especially something as huge as this) but he was so cool in talking with Dr. Maris about our hesitancies and reservations about giving back the stem cells - scheduled for the next day. Meanwhile a nurse stopped by and gave me Christi's counts. I observed the awesome Dr. Maris and realized he was completely shell shocked with what Shayne was telling him about our wanting to wait on the stem cells, but he handled it very, very professionally - explaining why he thought and the study called for her to get them back the next day. "We'll probably come crawling back to you begging for them in a week, but for right now I think we're going to pray her blood counts recover on their own." was all I was able to interject into the highly intense conversation in the waiting room. Wild!
Today it was back to the hospital - where else?! This morning we learned via a phone call that some of Christi's other blood counts came back quite elevated and they thought perhaps it was just a bad sample so they wanted to re-do them. (Thankfully, they were right as today's levels from her blood draw came back fine!) Shayne spoke with Dr. Suzi who explained that she would like to be kept abreast of our decisions and Shayne explained that it just so happened that Dr. Maris was walking by in the hallway when he stopped and we started talking. We had no way ever intended to leave the wonderful Dr. Suzi out of anything. She's a gem!! She politely told Shayne that it was a major violation of the study and that we were officially off of this phase I trial. CHOP will continue to treat Christi throughout this period and possibly afterwards, but we are no longer on this study due to our violation of refusing Christi's stem cells to be infused to rescue her on the scheduled time. Another child will be participating so that they have their "3rd patient" needed to get a true toxicity level determined now that Christi was "kicked off" (hee hee).
We are fully doing what we believe to be in Christi's best interests and we will have no problem saying we are wrong - bring on the stem cells. We may very well ask for her stem cells to be given back next Tuesday or the following Tuesday, but we want to give her some time to see if her blood counts will come back on their own - even though they probably won't and it'd be nearly a miracle not to have to get rescued by her stem cells in the next coming weeks.
We know how precious stem cells are. (Thankfully, we have plenty stored in 3-4 different states - about 6 "servings" actually.) However, once they're gone - they're gone. Nearly every new Phase I or Phase II study requires stem cells so we don't want to be down the road without them like sadly some children do and can no longer treat. There of course is also the issue of the possibility that they do have cancer in them (even though they tested negative for cancer cells) so why put that back into her? What happened to the stem cells that we fought to have purged in Los Angeles last fall one of the times when she harvested? Well, after the purge 90% of them were lost and there's not enough left for a transplant (a boost if needed, yes, but that's it!). Her blood counts were great going in to this MIBG treatment and she has a relatively low tumor burden so we're hanging on to the slight chance that she may come back around on her own. We believe we have some time as her next treatment won't be able to begin until January anyway so we're going to sit tight and see what Friday's blood counts show and then next Tuesdays. I'm nearly 100% confident that she'll need both blood and platelet transfusions again on Friday and I'm praying that she won't need her stem cells like all predict she will.
Finally, a sweet little guy we met in NYC last winter has relapsed and needs your prayers. He just went through his transplant 8 short months ago while we were neighbors on the 10th floor of Ronald in NYC. We are crushed and devastated. He's the cutest little guy and his mother is fabulous. Carl's web site is in Christi's Clubhouse at http://www.caringbridge.org/mn/carcar Please keep this wonderful family (and all of these cancer fighting kids) in your prayers during these most difficult days as they continue fighting this nasty beast called neuroblastoma - again. Goooooo, courageous Carl. We love you!!!
With love, thanks and gratitude,
Christi's Joke: Knock, knock (Who's there?) Pigeon. (Pigeon who?) Don't pick on me. Pick on someone your own age!
What's next? Blood counts and a physical by Dr. Suzi will be conducted on Friday. We're expecting Christi to need both blood and platelets on Friday. We hear on a daily basis from both of the girls, "When can we go home?" It's becoming very difficult for Shayne and I to hear this as we have no idea when we'll get to go back home, but are trying to plan another quick trip back for a few days as soon as time permits.
Prayer request: That Christi's blood counts recover quickly, on their own - without needing the scheduled stem cell rescue of this Phase I trial she's now been removed from. Lord, hear our prayer.
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