Wednesday, January 23, 2002
"You're braver than you believe.
Hello!! I'm fine! How are you?? Many of you wrote with concern about me. It was just the usual sore throat infection I get 2-3 times a year - nothing Zithromax didn't kick. Don't worry; I'm so thankful that Christi was in the hospital when I got it. Getting sick was inevitable, but I thought it would cost me a hotel room for isolation purposes, so this worked out great. Christi was at Sloan and I was at the Ronald McDonald House. Shayne and I both have slight colds right now and our prayer request is that Christi doesn't get one next.
The chapel is very easy to access at the hospital and it's not locked. I continue to go there and pray for her to have a full and complete healing. Our faith brings us comfort and provides us with strength. I'm grateful to have a renewed perspective about life and what's important in it as well as strengthened friendships because of Christi's cancer.
Saturday night we had an absolutely unbelievable surprise. Tim, Tom and Irv "dropped by" to say hello! As you can imagine, we were both stunned! Perhaps they really were going down Stump Pike when they took a wrong turn and ended up here (hee hee!). It was fabulous to see them! Nothing can beat old elementary through high school friends from Seneca East!! Amazing!! What an awesome shock to see them walk down the hospital hallway as I was packing up to go back to the house for the night. The guys visited with Christi and I for a bit and then went out with Shayne while I stayed overnight with Christi. New York will never be the same!! (hee hee) Thanks dear, sweet, generous friends! The nurses couldn't believe that they drove ten hours one way and got a hotel room to come and visit with us! Our room at the house is now stacked high with bottled water, paper towels, hand soaps and snacks! Wow! What was probably the sweetest though was getting to read the used Attica Hub newspapers of Tim and Denise! Awesome! How thoughtful! They may sell the New York Times and Wall Street Journal on every corner here in the city, but I'll take the news of home and of the great Seneca East students any day! (And just one week of New York Times newspapers costs more than a full year of the Hub! What a tremendous bargain!)
It's been pretty rough here! Just as I thought I was adjusting to living this abnormal life, fever set in on Wednesday of last week. She spent seven nights in the hospital. (We just got out this tonight!! Yipeee!) Her ANC was zero (no ability to fight infection or bacteria whatsoever) for six days. She received seven blood and platelet transfusions during her seven day stay. Thank you to the wonderful blood donors who are saving my child's life!! It was so hard to see her so weak and so sick day after day after day. She was extremely irritable, nauseous, tired, uncomfortable and trying of our patience. Many times we couldn't do any thing to make her feel even a bit better. The now "skinny-minnie" lost 6-7 pounds and didn't eat for nearly a week. Thank God for the fabulous nurses and doctors telling us it was "normal" for their kids on protocol N8. It's harsh and nearly unbearable treatment.
She was able to get her bactrium medication (which fights pneumonia and is taken at this hospital three times a week, twice per day) interveniously!! This was unbelievably good news to us! Shayne had asked repeatedly for that in Columbus and he was continually told that it couldn't be done. Well, it can here!! Yipeeeee! Anytime she takes something orally she get nauseous or actually loses her cookies so you can imagine the dance I was doing when we received this good news! Fabulous! It feels so good to be here!
Another huge difference here is the G-CSF shots (the injections that help to boost her white blood counts - white blood cells fight infection). Not only are they free since they were developed and patented at this institution (and this is one of the things that my insurance company wouldn't pay for back home) but they do not start giving the injections until day ten after chemo. They were started on day one at our other hospital. Dr. Kushner said the injections don't do any good before day ten anyway. We're thrilled about not having to give her the shots and cause her the extreme high anxiety she associates with them. The fewer shots, the better - yipeee!
We really miss the plush facilities as this place is far from the "country club" that we were being treated at in Columbus. And we miss the absolutely wonderful people, special care given and friendships made at Children's but we feel so confident in the treatment she is receiving here. They are by far the pioneers, leaders and experts in the field of Neuroblastoma. I thank God every day that Shayne found this place!! (Shayne's definitely the mastermind leading the Thomas Team. I sometimes think I'm just dead weight sitting on the bench.) I know God doesn't give us any more than we can handle, but He certainly doesn't give us any less either! Each day continues to be a very difficult challenge for all of us and I know for Shayla back home as well.
We were pleased to learn last week that Christi did have a sub clinical case of chicken pox sometime - despite the fact that she never had any outside evidence of it! They tested her and she was positive for titers. ("Grandma" Donna, I'm thinking that was probably when she was almost 2 and you called me at Christmas to tell me that Little Donna had broken out and you had been baby-sitting Christi and Donna at that same time. Wild, eh?! Kris, perhaps Shayla is immune too since she was with Connor and she never broke out like he did recently.) We were THRILLED to know that we no longer have that worry. Praise the Lord!! At this premiere hospital, they just ran a simple test which showed that sometime in her young life she did have chicken pox. Yipeeee! In the future, the preregimine chemo will totally destroyed her immune system (That's what will be given just prior to transplant) so she will need to have ALL of her childhood immunizations re-administered at a later time, but right now I'm just hoping to make it to transplant and to make it to the future! Clear bone marrow, clear!!!!!!! Be rid of those nasty tumor cells!
Like back in Ohio, it's very cold here. Shayne also researched and had many conversations with oncologists at Children's Hospital in Los Angeles. I noticed that it was almost 80 degrees there this week - can't help but wish we would have considered the weather when we made the decision on where to transfer Christi. (Smile. That was truly the least of our concerns.) We continue to be thrilled at the medical care she is receiving here. During the past two weeks I learned from many parents that they were told back home that their kids' bone marrow had cleared, but coming here for the monoclonal antibodies and having their bone marrow reassessed with the better testing that they do here informed them that indeed they still had disease. I'm so reassured that we're here. I'd hate to think she was clean and then much later learn that that wasn't true. When they do the bone marrow tests here, they test from four locations taking eight samples. They also don't only do aspirations, but actually take the bone marrow biopsies from four locations in addition which allows for more complete testing. That's much different than we experienced before. This Friday will be her bone marrow test here. I don't think I'll sleep until we learn the results of it. I pray that this new chemo has kicked it or at least reduced it significantly. It's certainly "kicked her" on the outside! She's miserable!
Shayne met with the individual who handles the insurance for Christi's treatment here. Shayne came back and told me not to worry - we'll definitely reach the one million dollar lifetime maximum that my plan limits us too. (Like there was any doubt! hee hee) But, what made me feel really good was that we have a very expensive doctor caring for Christi. Why does this make me feel so good? Well, my father often told me, "You just about always get what you pay for." I felt like hearing the bad news about expensive medical costs was a fabulous message from above letting me know that Dad's with me and we're going to get what we're paying for!"
At the end of this journal entry, I'll post an article written by a pediatrician who chose to have his son treated here at MSKCC. The article is entitled, "Every Doctor's Worst Nightmare.......My Own Child Has Cancer". He and his wife, who is a pharmacist, experienced many of the same scenarios that we have. (problems with insurance, arming themselves with knowledge, having another child to also care for, double checking doctors' orders and the child's records, etc., etc.) The average childhood cancer has an 80% survival rate and a child is an almost guaranteed survivor after 5 years in remission, this one however, is quite different. Neuroblastoma-IV has the unique ability to respond and first and then to reconfigure itself to no longer respond. Also, there is an 80% chance of relapse. Survival after relapse isn't very likely. You only have one chance to lick this baby right the first time. We know what we're up against, but feel confident that at least she's in the right place to do just that - God willing.
A few days prior to her hospital admission last week, I was putting a mask on Christi and she complained, "I'm the only kid who has to wear a mask." She knows all about low blood counts and precautions; however, that wasn't any consolation to her. Finally I said, "Listen. I can't help it if other kids' parents don't care about them. I care about you and I'm not going to let you get any more sick if I can possibly help it. You are not taking any risks because Daddy and I love you." That seemed to do the trick. One day that week she wanted to go to a library in the worse way. Finally, we gave in, located one just a block away and put a mask on her. (This big city library certainly lacked the warmth and charm of our great country libraries back home and while it had a nice children's section there was no Mrs. Bayer, Miss Judy, Miss Jill, Mrs. Harner nor Mrs. Kirby to give us that special attention Christi and I are so accustomed to at home.) Again I found it really bothersome to have children come up to her and ask why she looks like that. Now I know that the curious children don't intend to make such cruel and insensitive comments. I've learned that I can make a joke of it or educate someone, but that day I just couldn't do either - I only wished their parents would have taught them better. It has really bothered Christi to now realize that something is wrong with her as she looks so different with her bald head and mask over her nose and mouth. That's heart breaking for me. I think she looks more beautiful than ever! And it's actually hard for me to even remember what she looked like with her long, blonde hair.
This ordeal with cancer has been very stressful for us physically and emotionally. Therefore, to have a fitness center nearby has been a tremendous help and a positive outlet for our stress. It's definitely an escape from the constant tension. It's amazing how much better we both feel after working out. It's really the only break that we've allowed ourselves to indulge in and I'm so thankful to have a gym close by and to be using it on a regular basis. I'm also happy to have our mail from home forwarded to the Ronald McDonald House.
While this teacher continues to look for a lesson plan to follow, there just isn't one so we don't know what will happen next. Based on following other kids' on protocol N8, here's what we predict for the near future.............bone marrow test on Friday (We pray for a clean report.) Her counts should continue to rise slowly, then her sixth round of intense chemo (Second here in New York) will begin possibly as soon as Monday. They base treatment on individuals and on their blood counts here instead of following a schedule. They believe that every child is unique and responds differently to treatment. We will not attempt the stem cell transplant until there is no evidence of disease. The theory here is that treatment options are severely limited once transplant occurs. Also, why put a child through it if it doesn't meaningfully extend life. In fact, there is evidence that suggests that children who relapses after receiving transplant survive an average of 100 days less than those who did not receive transplant. While we do not expect to count days, the reality of our situation was reaffirmed recently. We got word that one of Christi's playmates from Columbus earned her wings and became an Angel this week. Please remember 6 year old Kirsten and her family in your prayers.
Thank you all for everything! This situation would be absolutely impossible to cope with if it were not for all of your help, love and support. May God bless you and keep you all safe and healthy in His loving arms!! Please take care!!
With warm regards,
A recent quote from Christi: "The best things in life are free - like love, your family and your health."
PROBABLE future plans Christi:
-More rounds of intense chemo until the marrow clears (1-5 who knows?!)
Here's an email Shayne recently sent his sister about the visit with his friends:
I had a great surprise Saturday night. I had just finished giving Christi her shot and had sat down to play a computer game with her. Angela was preparing to head back to Ronald when she called in the room and said, "Shayne! There's a detective out here to see you!!" I was sure it was about the shoe crime ring. So, I jumped up and headed out to the hallway. When I turned the corner, who was there but my college roommate - Tom! I was shocked, but knew that Tom was always good for a road trip at any time. As you know, Tom is a special friend that I cherish. We lived together, cried together, drank and fought together, and grown together. I was thrilled just to see him. So we shot the breeze for a few minutes and to my amazement - there stands Tim beside me! I am still not sure how he got down the hall without me noticing him, but there he was. Tim and I have monkeyed around together since Mrs. Smith's fourth grade class. It is remarkable to think that someone could have a constant friend since fourth grade, let alone one that shows up in New York when you really need a friend. So we had this big visit in the hallway for ten minutes or so, when who comes walking my way, but Irv! Irv and my exploits are legendary throughout high school. He and I shared that bond of being linemen together on the remarkable 10-0 SE football team. At that impressionable time in my life, the Heisers were always there to support me. Whether we were lifting weights, bailing straw, or just creating chaos on the farm, I was Irv's constant companion. I'm fortunate to be able to count him as a close friend. So what do you do in a city that never sleeps after coming off of the worst 72 hours of my life? (Christi had been very ill and I stayed with her while Angela was first on antibiotics) Angela said, "Why don't you go get a bite to eat with the guys?" Well, as enticing as that sounded, I was very reluctant. Christi was doing OK, but you never know how quickly that might change. Angela was feeling better, but I knew she was dead tired. Overcoming my hesitation, we went out and had a blast! I know now how Cinderella must have felt. It was a remarkable night. They were only in the city less than 24 hours. Tremendous friends! I've been blessed.
Love you, Bro
A doctor's worse nightmare:
May 12, 1998, was the day my family's life changed forever. Our 16-month-old son was diagnosed with stage IV Neuroblastoma, a rare childhood cancer (about 550 US cases per year) with a 60 percent fatality rate. I am a pediatrician and my wife Cheryl is a pharmacist, both used to helping ill people, but in this instance we felt totally inadequate.
For three months, Jacob had symptoms that we now realize were related to the tumor. He occasionally vomited for no apparent reason and had low-grade fevers. He was also very fussy, which we attributed to teething pain. Then one night, while giving him his bath, we noticed large protruding blood vessels and spider veins on his abdomen. The differential diagnosis of hepatomegaly was spinning through my head. A CT scan done soon afterward confirmed our worst nightmare.
The oncologist told us that we were in for a long, difficult year, during which our sweet, blonde-haired toddler would have to undergo chemotherapy, a stem-cell transplant, major surgery, radiation, and monoclonal antibody therapy. It was Jacob's only chance, the oncologist said. When a nurse asked if we needed anything, Cheryl replied, 'Yes, a different diagnosis." We cried the entire day; many more tear-filled days followed.
The rapidly growing tumor, which had begun in the adrenal gland and metastasized to the liver and bone marrow, had wrapped itself around the superior mesenteric axis, compressing the vena cava and aorta and forcing the development of a large collateral circulation. The tumor was so large it crossed the midline and caused the umbilicus to protrude. Hard as it was for us to believe now, Jacob had just had a normal 15- month well-child checkup.
Taking care of Jacob
Our dining room became a study hall, piled high with folders and papers. We read articles and had many phone conversations with cutting-edge researchers, but we found our most important ole was to be Jacob's loving parents and advocates. It's amazing how different the practice of medicine looks when one is the consumer- as opposed to the provider -of care.
Management of Neuroblastoma involves various philosophies and complex treatment regimens. Jacob received three rounds of aggressive inpatient chemotherapy, underwent a peripheral-blood stem-cell collection, then withstood another two rounds of chemotherapy. After a grueling nine-hour abdominal surgery, he received another two rounds of chemotherapy, a stem-cell transplant, radiation, monoclonal antibodies, and oral cis-retinoic acid. At each new phase of treatment, I would get advice from neuroblastoma experts.
The decisions were tough and agonizing- neuroblastoma must be treated right the first time, because the odds of survival diminish to about 10 percent with relapse.
Our medical backgrounds were helpful for Jacob, but sometimes problematic for us. It was incredibly useful to have the knowledge base and resources to find Jacob the best care. The oncologists had an easier time explaining things to us, as we already spoke their "language." During every rundown of the treatment course, though, I mentally raced through textbooks thinking of all of the horrible side effects of chemotherapy.
We tried not to interfere with Jacob's care by the medical staff. However, fearful of an overdose from the powerful drugs, Cheryl and I double-checked all the medication orders for dosing errors. At times, the hospital staff resented this, and even made it difficult for us to read Jacob's chart. But we knew they were only human, and we couldn't have lived with ourselves if we'd let Jacob down.
Because so many people were involved in Jacob's day-to-day care Cheryl and I became the major source of continuity. We kept track of his lab work, major test results, blood counts, and medications. Middle-of-the night admissions for fever and neutropenia were made easier for admitting residents, because we handed them all the information they needed to write their history and physical s we walked through the door.
Most of the nurses and medical staff we dealt with were compassionate and worked hard to support the needs of the patient and family. But one local doctor repeatedly chastised us for making treatment decisions for our son, telling us we weren't "objective" enough to do so.
Exchanges like that added to our stress- and made me realize hat doctors are only one cog in a very big wheel that determines a patient's care. The medical team is just that, a team, and should include the family in the decision-making process. I used to make my daily rounds, write my orders, and leave. Now, I remember that for every order and diagnosis given, the consequences are far-reaching for the patient and staff.
Coping with it all
When Jacob's blood counts reached their nadir, we made trip after trip to the hospital for blood and platelet transfusions. He was admitted for fever, neutropenia, and other complications such as disseminated intravascular coagulation, croup, sepsis and central line infections-often going from status quo to intensive care in a matter of hours. Jacob was hospitalized essentially one out of every two days for the first eight months.
There were many scary moments when we felt we were losing him. During his stem-cell transplant, Jacob suffered through painful mouth ulcers and subsequent mucosal sloughing, causing thick secretions to obstruct his airway almost to the point of requiring a ventilator. He would sit listlessly on our laps, requiring blow-by oxygen and a suction catheter whenever he began to aspirate his secretions. We bathed him in Hibiclens every six hours to prevent skin burns from the chemotherapy. Etoposide led to a rapid drop in his blood pressure, along with an unexpected hypoglycemic reaction.
The transplant was followed by 100 days of strict isolation at home, with no visitors. As soon as I came home from work, I'd immediately shower and change clothes, fearful I had brought in some innocuous germ that could be deadly to him. At work, it was hard for me to deal with seemingly trivial issues, such as parents complaining about being up at night with a child's ear infection. I wanted to tell them how lucky they were.
It was wonderful having Jacob home from the hospital, but his care was sometimes overwhelming, especially for Cheryl, who was the primary caregiver. We learned to mix and administer total parental nutrition, give shots and numerous oral medications, and change central-line dressings. He stopped eating because of the chemotherapy and was attached to a central IV line for his TPN for about 10-months at first for 24 hours per day, then a more merciful 18 hours daily.
It was a game for him to see how far he could run, but we'd have to chase him madly lest he pull out his line. Because we had to stay within a few feet of him, routine activities like cooking and going to the bathroom became new challenges. It's amazing how much energy a 2-year-old has- even one attached to an IV line. At bedtime, we took turns sleeping in Jacob's room to untangle he IV line and catch vomitus caused by the chemotherapy. Sleep-deprived and barely surviving, we wondered how on earth "regular" parents learned to do all this. Jacob finally graduated to a feeding tube, followed by months of relearning to eat normally.
A family under Siege
The type of stress we were experiencing can strain a marriage to the breaking point. In our situation, the opposite occurred. Cheryl and I became closer than ever before. Indeed, we made a perfect team, dividing the labor of Jacob's care and keeping each other emotionally afloat. Without my wife, I would not have survived. The psychologist advised us that expressing anger, grief, and disappointment meant we were healthy-- and boy, were we healthy!
Most of our family friends, neighbors, and co-workers were very supportive, although a few chose to distance themselves. Overall, it was very humbling to be the recipient of such love and concern. My in-laws lived with us off and on during much of our ordeal, which was a lifesaver. Cheryl's company flew us to New York City on their corporate jet for treatment, and the president of the company went out of his way to divert the plane when we needed a ride home.
Others baby-sat big brother Nicholas at the drop of a hat, provided home-cooked meals or funds for take-out meals away from the hospital, and donated money for neuroblastoma research, and helped get us through the rough times with prayers and countless other acts of kindness. Our faith in humanity was confirmed.
Looking for resources
Our local children's hospital treats only a few cases of neuroblastoma per year, which made us feel quite isolated. The Internet became a wonderful tool that allowed us to connect with other families going through the same ordeal. An Internet support group for neuroblastoma families around the world, which "meets" via the Association of Cancer Online Resources, has been incredibly helpful. These parents "get it" in a way that even our relatives and friends cannot, because we're all members of a club nobody wanted to join. We exchange information about available treatments, laugh and cry together, and mourn together when a child loses the battle. We've even gotten to meet many of these brave families. As physicians, we should recommend similar support groups to patients with life-changing diagnoses.
After Jacob was diagnosed our answering machine was flooded with messages from friends and family. Out of necessity we began sending out e-mails, called "Jacob Updates," so that everyone who was interested could be apprised of how he was doing. This freed us from having to repeat the exhausting details with everyone by phone. A patient from my office developed a Web site to help with our updates. The site brought us prayers from around the world and increased the awareness of childhood caner.
Legislation regarding health care suddenly became very relevant to me. Previously, I'd talked about managed care and other health issues with colleagues, but I had no inclination to get actively involved. Jacob's illness changed my philosophy. Some of the laws that helped us were the Family and Medical Leave Act and the Health Insurance Portability and Accountability Act (HIPAA).
Cheryl immediately took a leave of absence from her job to care for our son. Her employee benefits, including health insurance coverage for Nick and Jacob (I had my own policy) continued for 3 months. Then, thanks to HIPAA, we were able to put the entire family on my work plan (a PPO with out-of-network coverage) when her leave ended, without fear of coverage being denied due to pre-existing conditions.
The transfer of benefits was timely, as 11 days after Cheryl's leave ended, we traveled to New York for Jacob's surgery. Had we been forced to stay in her HMO, we would have had no out-of-network coverage and would have been responsible for thousands of dollars in hospital and doctor bills. Alas, our benefits did not come without costs: Insurance premiums have skyrocketed for the practice and employees.
Keeping up with bills was a heavy burden. Payment would often take several months, particularly if the claims underwent "medical review." Meanwhile, we would receive "past due" notices from the hospitals and doctors. The insurance company denied coverage many times for exceeding "usual and customary charges." We spent hours writing letters explaining that the charges were reasonable because treating this rare disorder meant specialized tests.
To complicate matters, the hospitals and doctors offices often erred in their billing-- sometimes comically so. Once we were billed several hundred dollars for "amniotic fluid testing". Cheryl called the hospital to let them know Jacob was a 2- year-old boy who had never been pregnant! Even going to in-network health providers sometimes resulted in erroneous bills. Next to the medical articles stacked high in the dining room were endless bills and insurance paperwork.
The average doctor may not realize that patients, too, must deal with the constraints of managed care and other third-party payers. We need to remember this when patients call our offices to straighten out a bill.
During Jacob's treatment, our worst financial problem was getting insurance coverage for the last step, monoclonal antibody therapy. The antibodies are a critical component of keeping him in remission. FDA approval has not been sought for this effective therapy, however, because there are no investors to support such a rarely used procedure. Essentially, for neuroblastoma, even standard-of-care therapy will never get out of Phase 2 and 3 trials because of the small number of patients.
For three months, our insurance company denied coverage, calling the therapy "experimental." This made no economic sense to us. As we pointed out to them, it would cost roughly 15 times more to treat a relapse than to keep Jacob in remission by using the antibody therapy. Worse yet, they refused to allow an oncologist to review Jacob's case. With two denial letters in hand, we went to New York anyway for Jacob's first round of antibody therapy. After much letter writing, research, phone calls, and persistence, the insurance company conditionally agreed to cover most of the costs associated with this therapy. We anxiously await the passage of a patient bill of rights that would ensure patients access to high-quality clinical trials and guarantee that they're not denied necessary care.
It was disheartening to learn how little money goes toward neuroblastoma research. In 1998, the National Cancer Institute had a budget of $2.55 billion; only $8.9 million, or around 0.3 percent, was allocated for neuroblastoma. There was no money for neuroblastoma research in the American Cancer Society's 1998 budget. We couldn't help but wonder whether a more generous allocation could have yielded treatments of benefit to Jacob and others.
To help raise public awareness of the need for research funding, our local television station did a story on Jacob. (He slept through his big debut!) Kathy and Joe Figliuolo started the "Katie's Find a Cure Fund" in honor of their daughter, Katie, who died of this horrible disease. Tax-deductible contributions of any amount may be sent to:
Memorial Sloan-Kettering Cancer Center
Every penny goes toward neuroblastoma research by the Memorial Sloan-Kettering Cancer Center neuroblastoma team under the leadership of Nai-Kong Vincent Cheung, MD, a brilliant scientist and compassionate pediatric oncologist.
Where are we now?
Being there for Jacob and being his advocate was the greatest gift we could have given him and ourselves. Our lives are slowly returning to normal, but with a new perspective. We realize the importance of reaching out to others who need our love, support, and friendship as they go through their own trials. We will always live with the fear of a relapse and possible death, but we hope, pray, and continue to fight for a cure for this deadly cancer. We have a deep appreciation for each day that we get to spend with Jacob.
As for my work, I've found a new motivation in the way I practice. The natural business of doctors is reassurance. We find it easy to focus on the technical side of medicine, but we shouldn't orget patients' emotions. Nowadays when I have to give patient's bad news, I really feel for what they'll have to go through. Some patients know our family is still fighting this battle, and yet I am maintaining my practice and trying to lead as normal a life as possible. I think this helps them deal with what life has just thrown them. I've had parents tell me that our experience has helped them realize what is trivial and what's important in life.
We often focus on the negative as professionals in today's health care environment. But regardless of Jacob's outcome, this experience has forever changed the way I view medicine.
Reproduced with permission of Medical Economics magazine. Copyright 2000 by Medical Economics
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Shayne & Angela Thomas: email@example.com