Monday, June 27, 2005
Imagine one day your eighteen-month old toddler wakes up from his nap with one of his ankle's swollen to the size of a twelve-inch softball, it's all red and warm to the touch. You know he didn't fall down or slam it between a door or something like that. He just woke up and there it was - something is definitely wrong with this picture. So you take him to the doctor to see what might have caused this spontaneous fireball in his ankle. The doctor refers you to the local children's hospital for more extensive diagnostic tests to figure out what's causing this 'infection'. A few more tests and the answer comes: severe onset juvenile rheumatoid arthritis. What the ???? Arthritis is for grandma and grandpa - not for children - especially a toddler whose learning how to get around.
For God's sake - he hasn't even begun to get into all the things you KNOW he's going to ... and even more things you have no idea how he could possibly get into.
Tommy has become somewhat notorious in pediatric medical circles up and down the East Coast. When he was a respectable northeastern Children's Hospital, his diseased little body became a bad news incubator - with each course of treatment would come side effects and undesirable clinical outcomes. That's a sterile way of saying "We don't know what is going on inside his body. Everything we try creates another set of problems that we've not seen before. And, by the way, all these medicines we're pumping into his little body - they've never actually been tested for children - let alone sick ones as young as Tommy." This is guesswork. Very expensive guesswork. And you can imagine how insurance companies love paying for guesswork-related medical treatment plans.
Over the course of the next eighteen months, Tommy got sicker and sicker. In fact, he became the sickest child with juvenile rheumatoid arthritis (JRA) the jra experts had ever seen. They tried everything known to medical science that was approved and those experimental treatments being developed. Everything.
At one point, Tommy was so sick, the doctors told his parents there was nothing left but to take him home and "start making final arrangements". He might have another twenty-four hours, but who really knows? God, who can bare to hear those words? Tommy's mom and dad asked if getting him to a warmer climate would make a difference. After all, Arizona and Florida aren't filled with old people trucking around on those mobile scooters because they have liberal road rules for slow moving vehicles. Or, maybe they do, but that's not entirely the point here. The doctors said maybe. Well, that's different and a whole lot better than "start making final arrangements". What would you do at that point? WWYD?
That night, with only a bagful of clothes, they took the next plane to Florida. Fortunately, Tommy's grandparents lived near Daytona Beach and Tommy's dad grew up vacationing down there when he was a boy. There was hope, faith and a lot of praying going on. Please God, don't take Tommy back without giving him a chance to experience just a little bit of life without the daily hell of pain beyond description. And, you know what? It was without description from Tommy's lips. Tommy didn't complain about how much it hurt him to have both his ankles, knees, hips, wrists, elbows and shoulders swelled with inflammatory poisons eating away at his innocence, let alone his childhood. Tommy didn't complain about the pain when the chemo was coursing throughout his arteries and veins when 'treatment' was taking him to the brink of death in the hopes of wiping out the insidious, cellular evil-doers bent on taking over this little boy's body. He didn't complain. He would cry when he saw how this was impacting his heroes, Mom and Dad. They were there for him. Every day in every way. He reacted to their pain, but he wouldn't cause any on his own account. He was a blessing from God who was going to teach the world how to live with courage, strength, dignity and love. Tommy is on a mission.
Welcome to the Sunshine State! Tommy responded to his new digs. He cleared the critical juncture that had the experts giving up. He wasn't healed, not by a long shot. But he wasn't on deathwatch either. It took awhile, but Tommy's parents found him a new doctor, another specialist in pediatric rheumatology who put Tommy first. Not that his previous doctors didn't have Tommy's best interests in mind; they did all they could and everyone can be proud. But this was out of their hands. After all, it's a God thing. Always was. Always will be.
Fast forward to January, 2005. Tommy has run the table a second time on all known clinical treatments for severe onset juvenile rheumatoid arthritis. His doctor is one of the leading pediatric JRA specialists out there. And she's there for him. But, she's at the end of her stethoscope, too. Tommy needs more. He'll always need more than mere mortals can provide. He will die soon unless he gets a medical miracle or divine intervention.
She calls her colleagues at one of the leading academic medical centers conducting research in bone marrow transplantation. They consult on Tommy's case and all agree he needs more than is available. In fact, he needs what's been theorized but never really tested. He needs a medical miracle. Remember the love shown by private insurance companies for procedures not guaranteed? Yeah, they're really pulling for Tommy, too! NOT. It's estimated to cost about $400,000.00 to harvest Tommy's bone marrow, scrub it, infuse it with T-cells, incubate it and then re-introduce it back into Tommy's system.
This medical center agreed to take Tommy's case. In addition to Tommy and his parents having to figure out how to raise the money, they also have to get him from Florida to Washington State. As sick as Tommy is, he needs special clearance from the FAA, TSA and the airlines in order to board the aircraft. Why? Because he must carry all his meds with him (20 plus) in a cooler, a wheelchair for the long walks in the airports, additional assistive technology and other stuff I don't need to go into right now. The point is, no matter what, this is not going to be easy ... it hasn't been for one minute since this odyssey started three and a half years ago.
Tommy's mom gets all the paperwork from the medical center clearing Tommy to arrive and be consulted by two different specialists. They also indicate clear as day that Tommy's care will be 'self pay'. The doctors have agreed to write off their professional fees for Tommy - all of them - and the multidisciplinary team is huge. This is Tommy's last chance to see his sixth birthday. There's a lot riding on this. Tommy has a lot of people praying for him - he needs more. Tommy is scheduled to get his consultation for the bone marrow treatment on Tuesday, June 28th.
On Wednesday, June 22, Tommy's mom gets a call from the medical center. They are told not to come because Florida Medicaid won't pay for the treatment. Even though the medical center told Tommy's doctor just the day before that everything was still a "GO", all of a sudden, it's off. It seems as though the Prince of Darkness has commandeered the controls of life's roller coaster that Tommy and his family have been on. You know there's trouble in River City ...
Tommy's mom called his doctor in Florida and relayed the news. His doctor called the medical center and arranged a conference call for Thursday to find out why they renegged at the last minute. TOMMY'S GOING TO DIE. This isn't about the money. It can't be. After all, the procedure they are going to do on Tommy has NEVER been tried before on a child. There are no known billing codes the medical center could use to even attempt to get reimbursed for providing the care. It has to be something else. But what?
The conference call must have stirred the pot something fierce. The call came late Friday afternoon that Tommy's consult is back on. He will be seen after all. They won't do the procedure until they personally meet Tommy and do an extensive consultation workup on him. After all, they have his entire medical record and every known diagnostic test and treatment plan tried so far. That's how they made the initial decision to bring him up to the medical center to try this experimental procedure.
Tommy and his parents left this morning for the medical center. They meet the doctors tomorrow. Will you light a candle and say a prayer for Tommy and his family? For the doctors, technicians and everyone involved in considering his plight? For the Tommy's yet to come, because you know they are out there ...
Eternal God, giver of life and health; comfort and relieve your sick child Tommy, and give your power of healing to those who minister to his needs, that he may be strengthened in his weakness and have confidence in your loving care; through Jesus Christ our Lord. Amen.
You ask "WWYD?" I know stem cells are an excellent source to heal arthritic pain. Also, not many people know, but Cuba's medical system is lite years ahead of us in many things. If this was my child, now that borders are open, I'd take a trip!