Update from Keith: June 6th, 2008

Taylor went in for chemo today. The last two chemo treatments, I have been the lucky one to spend the first night with Taylor; tonight is Kris's turn. Chemo nights are often T's worst nights. I dread them.

When Taylor gets chemo, she receives large doses of hydration. One of the chemo drugs (I think it is cyclophosphamide) is toxic to the bladder (frankly, they are all poisons and are toxic to everything, but apparently this one even more so to the bladder). To avoid causing problems to her bladder, they over-hydrate her and insist that she urinate every 2 hours for the first 8 hours following the dose. This wouldn't be a particular problem if she received her chemo at noon. But she never receives her chemo at noon.

Generally, it's much closer to midnight (it's actually been midnight a couple of times) before she gets her chemo. Thus, whichever parent spends the night with her has to wake her every 2 hours and insist she urinate (which, of course, is the last thing she wants to do as she feels awful and just wants to sleep it out). Invariably it leads to vomiting and crying (her and me) and pain and gets repeated again 2 hours later.

The last chemo cycle was especially frustrating. Every chemo day begins with the ritual phoning-the-4-west-charge-nurse-asking-for-a-bed. They know she's coming in for chemo. They know she needs a bed. But we have to call each time in the morning anyway. Call it tradition. Or ritual. Usually, the ritual phone call receives the ritual response: nothing available right now, but we expect some empty beds later, come down in the early afternoon and we'll see if something becomes available (or something to that effect; as with all rituals only certain individuals are privy to it and in our family it is Kris who invokes the chemo phone ritual).
Last cycle was different--a bed was available right away. So, Taylor was in the hospital, in a bed, before noon. Before noon means administering chemo long before sleep which means performing the urination ritual while awake. Hallelujah. Finally a little bit of luck.

But there was a catch. The hospital, it seems, has its own internal rituals. One of their rituals is the chemo approval ritual. Their ritual requires approval of the oncology attending before administering chemo. By noon last cycle, her oncologist, the resident, the charge nurse, and the pharmacy had all signed off on her chemo. Only the attending's approval remained. He was in a meeting. So we waited.

Once 4:00 rolled around and we still had not received the attending's approval (nor had he examined Taylor) I started getting angry. Very angry. At this point I was going to have to wake Taylor at least once, if not more. I registered my complaints with the resident (registering my complaint consisted of me telling them that this was ridiculous and that I thought being an ATTENDing required ATTENDance and that I wasn't going to pay for this a**hole to delay T's chemo, etc. etc.) and they paged him frequently to no avail. Finally, at 6, the nurse came in and told us the attending had signed off on the chemo. The SOB didn't even examine her first. If he's not even going to look at her, why not just sign it in his meeting, or his lunch, or his dalliance with his mistress, or whatever else he had been doing for the past 6 hours.

Thus, Taylor's chemo didn't start until around 7 last cycle and I was stuck waking her up every 2 hours. Worse, we had a particularly bad nurse who I knew I would not be able to count on to come in and wake us up. So that meant I had to stay up all night. When the 8 hours expired, there was still too much of the drug in her urine so we had to extend the wake-up-every-two-hours thing. Even worse, it was particularly hard on Taylor last cycle and she spent part of the night writhing in pain, part of the night high on Ativan, and part of the night paranoid as she came down from her high. It's no fun to see paranoia in a 5 year old (now 6 of course).
I hope that tonight is better for Kris and Taylor, but she still hadn't started chemo as of my last phone call at 9:30. I predict little sleep for Kris.

One interesting development tonight is that this cycle's on-call attending (Dr. Mascarehnas (I'm sure I am butchering the spelling) whose kids go to Mayfield--Taylor's school) felt that she has too many neurological issues to administer Vinchristine (the chemo drug that she was supposed to get weekly, starting today, for the next 6 weeks and which she gets every cycle). Taylor's oncologist had just seen her Tuesday and concluded otherwise. After speaking with Dr. Mascarehnas, he changed his mind and they are holding her Vinchristine. I hope her walk/grip/speech improves.

The other drama tonight concerned her dose of Neulasta that she should get on Monday. Neulasta is a drug that spurs white cell growth. The beauty of it is that it only requires one dose, post-chemo, which lasts all 3 weeks until the next cycle. Otherwise, T would require daily shots of Neupogen in her leg.

Neulasta is extremely expensive, but we are told that the cost of 1 dose of Neulasta is roughly equivalent to 3 weeks worth of Neupogen. Therefore, the insurance company has approved her for Neulasta. We appreciate this greatly because we don't want to put Taylor through any more than the hellish routine she already has. Daily shots are not the answer to her recovery.
For whatever reason, the insurance company will not approve Neulasta to be administered in-patient. Only out-patient. Thus, there is a service that delivers the drug to our house and we (and by we I mean Kris) give her the shot on Monday following chemo.

Well, at 5 minutes to 6:00 tonight (Friday evening), when it is too late to do anything about it with the insurance company, we learned from the home delivery people that they would not deliver us Neulasta unless we pay them $600 (above what insurance pays them). They claimed that they had just looked at their insurance reimbursements for Taylor's medicine and that it costs them $2800 for a dose of Neulasta and the insurance company only pays them $2200. They want the difference from us or they won't deliver the drug.

Frankly, it is worth $600 to me not to see Taylor have daily shots. Still, it is ridiculous to essentially blackmail us when it is too late to appeal to the insurance company or make alternate arrangements (mail order) to get the drug. So, with the gun to our head, I agreed to pay the $600 if it turns out the facts are as the delivery company claims they are. We'll see.
My Dad will follow up with the insurance company on this. One thing that has been great is that my Dad is handling all of our billing. I gave him my credit card number (might as well get the miles) and asked him to go through all the bills, all of the explanation of benefits from the insurance company, make sure that we are being charged what we are supposed to pay and that the insurance is paying what they are supposed to pay, and then pay the bills that come in (but over time if possible). This he has done perfectly. It is a large burden off our shoulders as we simply don't have the time for it. Plus, my Dad is an auditor and has the perfect blend of experience for the job. He quickly sorted all the bills, figured out what we owed, negotiated monthly payments where appropriate, and sent in 8 or so appeals to the insurance company for various things. I can't thank him enough for sorting that out. I'm sure he'll get to the bottom of the Neulasta issue as well.

At the end of the day, $600 is a small price to pay for Taylor's smile. Plus, it is a fairly small portion of Taylor's bills in any event. Heck, this will make up for any charge the attending from last cycle might try to sneak past. My Dad and I are just waiting for that a-hole to appear on the bill. I wonder if they teach the consequences of mail fraud in medical school.