We are once again coming to the end of a great third week. Taylor has been cheerful, active, and feeling great. That will all come to a halt tomorrow when we return for more chemo. It is so hard to take her back there again. Keith and I were saying to each other that the longer that we are away from the hospital, the harder it is to return. It is hard not to be greedy with the good times. I look back to March and remember praying for a single pain free day with no throwing up and just wanting to hear Taylor giggle and see her smile. We have had almost ten days of that now. Each third week of the chemo cycle seems better than that last!
We started physical therapy last week. Taylor really enjoys it because she plays games most of the time and gets to play with balls and walk on balance beams. We have also been swimming a few times. We bought her a ring so that her face and the tape for her ng tube can stay dry. She loves to just kick around the pool and play. Then her PaPa introduced her to the nice warm jacuzzi where she can touch the bottom with no problem and there are bubbles! I am not sure she will ever go back to the pool! Taylor has also been much more active at home. She walked halfway up the hill three times in a row last night.She would have gone the whole way if I would have been willing to go with her but I am not crazy. The hill that we live on is very steep and menacing. There were days when she could not even walk out to the mailbox with me.
Taylor has also been spending a couple hours a week with her teacher. Her teacher, Mrs. Agundez, is one of the most amazing women and she loves her! This week they were working on math and reading. Taylor really looks forward to her visits and we are so blessed to have her. One thing that I have learned over the past few months is that I would have made a horrible teacher. I tend to lose my patience and just do everything for her. I guess we all have our callings and mine is not teaching!
We will try to give another update this weekend and let everyone know how Taylor is doing. There is a small possibility that Taylor might not be ready for chemo on Friday if her platelets are still too low. Hopefully her body will cooperate and we will be one step closer to the end of chemo. They have decided to hold the Vincristine again so hopefully the dactinomycin and cytoxan are doing their jobs!
Update from Kristin: June 26th, 2008
Update from Keith: June 15th, 2008
Well, today wasn't quite the Father's Day that I had imagined. T had a difficult time last night; she threw up every three hours or so. When this repeated at 6:30 AM, I could feel she was quite warm. Uh oh.
We took her temperature and she was 38.4 (about 101). Any fever over 38 and we have to call the hospital. Kris did and, of course, they asked us to come in right away. My Dad came over to watch Charlie (Charles was still sleeping) and we left for the hospital around 7.
The first stop on these visits is always the Emergency Department. They are mostly clueless about what to do with T, but they do know how to access her port, who they should call, etc. Of course, they also insist on doing their own exam each time and coming up with their own pet diagnosis for what ails her. As if Rhabdomyosarcoma is insufficient to explain her condition.
When we got to the ED, her temperature was 38.9 and she was having chills. They fairly quickly got us into our own room (which is good because it allows Taylor to take of the surgical mask that she otherwise wears when anywhere in the hospital outside 4 West). Taylor threw up not long after we got there; she was nervous about having to have her port accessed (and thus stuck with a needle) and that sometimes leads to vomiting. It's frustrating for Kris and I because we really want T to be used to this by now (after all this happens a couple of times each week and she always reports that the pain is not much) but we forget she's only 6. Six year olds (and especially 6 year olds named Taylor Thorell) get nervous over things like this).
After that, the ED resident came in to assess her. The nurse quickly asked him if she should re-administer the dose of Tylenol that T had just thrown up. The doc told her to give T Motrin instead. Big mistake. Motrin is a no-no for cancer kids because it can interfere with platelet growth or something like that. Kris pointed it out and he decided to stick with Tylenol. Good idea, Doc. Did that take 4 years of med school to figure out?
That was just a warm-up for this guy. He had lots of questions about her medical history (was she full term? why did you have a c-section?, etc.) One of these days, in my best Carville voice, I just want to say, "It's the rhabdomyosarcoma, stupid!" After the endless annoying questions, he looked at her mouth (briefly; I think he could tell it was over his level of competence), listened to her chest intently, and then turned to check her abdomen. So, he starts pressing on her stomach hard and asking if it hurts (of course it hurts, moron, you're pressing hard on it). Taylor, being 6, answered truthfully and told him yeah, it hurts (it would hurt me, too). So, Dr Genius decides that T needs a stomach X-ray because she has stomach pain. Leave aside that the only reason we are here is not because she has pain anywhere or even because of her chronic emesis, but is solely because she needs antibiotics since she is neutropenic and has a 38.4 degree fever. This guy apparently thinks that a stomach X-ray is going to solve all Taylor's problems. Do you think maybe it's the rhabdomyosarcoma IN HER HEAD that is causing her the problems, Doc? But seriously, thanks for exposing her to more radiation. God knows she needs more of that.
I'm not even sure how the stomach X-ray turned out. In fact, I'm not sure anyone ever viewed it. No wonder the cost of emergency room visits is bankrupting our health care system. The only good thing was that the radiology waiting room (where Taylor had to again don her mask and risk exposing herself to more germs) had the show "Full House" on, which Taylor likes (the ED rooms have TV's but no reception, they only play DVD's). This particular episode was set in Tahoe, so Taylor liked it even better. I hope we can take a long weekend there sometime this summer. I think it would be good for T.
Not long after the X-ray, a bed was ready on 4 West. So we went up there around 11 and T remains there getting antibiotics. Episodes like this usually result in a 72 hour stay unless a blood culture shows something to worry about in which case they can be longer.
I spent Father's Day morning with Taylor and the afternoon with Charlie. We went back down at night and Kris, Charlie and I went to dinner while my parents spent time with T. She was mostly in good spirits today which is a definite improvement from the last few days.
My Mom will spend tomorrow night with T and I'll probably spend Tuesday night if my work schedule permits. I can always take a rain check on Father's Day. Heck, the only thing I want anyway is for T to get better and maybe this stay will move that closer. Here's hoping.
Update from Keith: June 13th, 2008
Taylor's week started pretty well. I thought she had more smiles than usual this close to chemo. But as the week has dragged on (and her white cell counts have plummeted), she has noticeably worsened. She has been much more nauseous the last few days than she was at the beginning of the week. She is also clearly uncomfortable. She has complained frequently that her tummy is hurting. We're a little concerned that her mucositis has spread to her stomach. We're watching closely to see.
Taylor received a transfusion again yesterday. She received both red blood cells and platelets. We're hopeful this will take her through the weekend. Our experience has shown that she is most likely to spike a fever sometime this weekend (usually Saturday night) if she develops one at all. Thus, we suspect she could wind up in the hospital over the weekend (that's not exactly what I want for father's day). If it happens, it requires at least a 72 hour stay which means that she'll be there into next week.
Kris has really been struggling of late. She is really down and is having a hard time coping with the stress of Taylor's treatments. It's hard for her because she spends all day with Taylor and sees every little setback and witnesses T's suffering. I'm trying to get Kris to go out of town for a weekend or even a night, but she refuses.
If things stick to the regular schedule, Taylor should turn the corner around the middle of next week. I hope we make it through without going back to the hospital. In any event, I will try and update the blog again over the weekend.
Update from Keith: June 9th, 2008
Taylor had chemo on Friday night. As usual, they didn't start her on chemo until 11:00. At least it wasn't because the attending could not be found. This week's attending signed off on Taylor's chemo not long after she was assigned a bed.
It was a mini-reunion on 4 West this Friday. Taylor's original roommate from her first hospital stay, Sophia (or maybe it's Sofia?), was there because she had developed a fever. Kris and Sophia's mom, Amy, text each other often and it was nice to see them again. I can remember being jealous of Sophia and Amy back in those dark days because although she has a brain tumor, her prognosis was better than Taylor's. Now I am just happy that both Taylor and Sophia seem to be getting better.
Also on the floor on Friday night was Robert, a 4 year old from Simi Valley. Robert was also frequently on the floor during Taylor's long hospital stays. I remember being so amazed that he was often in a good mood, running up and down the halls, and enjoying the play room. That seemed so far away for Taylor at the time (now, Taylor, too, has her bright moments, usually 10+ days post-chemo). Robert's treatment has already finished so seeing him there brought a momentary worry. It seems that his x-rays had revealed some spots somewhere in his body that concerned his doctors that his cancer had returned. After examining him more closely, though, they concluded his cancer has not come back. It was nice to see his parents again, though.
Finally, Maneh, another frequent 4 West patient was on the floor on Friday night getting her last chemo treatment. Maneh is probably 8 or nine years old and is a sweet, smart little girl. She has the same cancer--Ewing's sarcoma--that Kris had. Kris and Maneh's mother talk frequently when both are on the hall. Although I am glad for her that her treatment has finished, it was a little sad saying good-bye to them on Saturday morning as we may never see them again.
One Friday visitor to 4 West particularly excited Taylor; the actress who played the role of "Lavagirl" in the movie the Adventures of Sharkboy and Lavagirl, Taylor Dooley, came to visit the kids. Taylor is a fan of the movie. She was also excited when we told her that the actress's name is also Taylor. But she was also shy. A combination of not having hair and not feeling her best coupled with some natural shyness made T want to stay in bed. Finally, we convinced her to get up and go see Lavagirl. T came back with an autograph and a big smile. She was so proud of herself for meeting someone so "famous." I was proud, too.
I was able to skip night duty at the hospital this time, but I'm told that the same Ativan-induced cycle repeated itself. First, she was extremely high--unable to sit still, very happy--then she came crashing down to the point where she was crying for long periods of time for no particular reason. It's almost an emotionless cry, though. She doesn't seem particularly sad, she just cries. I hate putting her through the Ativan ups and downs, but it's the one drug that seems to curb her chemo-induced nausea. Thus, we put up with the dancing up and down the hall (yes, she literally does this with her IV pole trailing behind her) and the purposeless tears to avoid her throwing up as much (she still throws up, of course).
Taylor was able to come home on Saturday afternoon. She did not feel great, but it is always nice to have her come home. Kris gave her a little Ativan again on Saturday evening and Taylor finally went to bed after a half-hour or so of crying. We hate what the various drugs due to her emotions, but feel powerless. The beneficial effects seem to outweigh the costs (barely) so we keep administering them to her, although I think we will try and skip Ativan in the future except for the day she actually receives chemo.
Kris and I had completely different opinions of Taylor's Sunday. I thought she was surprisingly smiley and in good spirits for 2 days post-chemo. Kris thought Taylor was feeling awful and felt bad about it. I'm not sure why I don't think that, but I thought she seemed really great.
Overnight, though, was a different story. She felt awful at bed time and complained of nausea. She threw up a few times over night. Throwing up for her can be especially awful because of the sores in her mouth. When the stomach acid hits those sores, her mouth just burns. When she threw up around 2:45 last night she asked for some ice which she puts in her mouth after she finishes throwing up to soothe the acid burn. At various times we have kept little baggies of ice in the freezer so that they would be ready for her when she asks. Kris quickly got some last night and brought it to Taylor. T puts each piece in her mouth for 5-10 seconds before she spits it out again. I hope it helped.
The Neulasta $600 blackmail has been resolved in our favor. My Dad called the company this morning and talked to someone over there who admitted that they made a mistake on Friday. While it is true that each dose costs them $2800 (I used to think it was like $9800) they get reimbursed over $3000 by the insurance company. Thus, they make money on the dose, contrary to their Friday evening claims. They apologized for the mistake and for their poor timing and pledged to continue to supply T's Neulasta. Problem solved.
Interestingly, the Attending from last chemo cycle that I wrote about in my last blog entry does appear on the most recent bill. Apparently three-hundred-something dollars is the going rate for not seeing a patient and delaying chemo. My Dad explained to the insurance company why it was an inappropriate charge and they are investigating. I'm interested to see what happens. BTW, the doctor involved is apparently a world-renowned specialist for the types of cancer he generally treats and he is Sophia's doctor. I would enjoy the opportunity to speak with him regarding his inattentive attending duties and his billing practices.
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.
Update from Keith: June 4th, 2008
I apologize for not doing a better job of late at updating the blog. It is hard for me to do when Taylor's doing reasonably well, as she has lately. Writing for the blog brings me back to those timeless empty nights we spent at the hospital in January, February and March. It's a place in my mind I don't like to visit.
Today Taylor had surgery. It has been planned for some time. We knew that Taylor's NG tube had exceeded its expected life span (this was reinforced on Taylor's birthday, 5/23, when Kris could not get anything through the tube, brought her to the hospital and finally a dose of peroxide combined with shoving a metal wire through her tube opened it again). Thus, one of the things the doctor accomplished today was replacing Taylor's tube.
The other thing we wanted was to see if they could clean out her nose, mouth and throat of the prodigious amounts of mucus that haunt her without end. The doctor was able to clear one nostril, but not the other (T's left nostril is nearly closed with scar tissue and needs more extensive repair than is wise to undertake during chemotherapy). The doctor also scraped off her mouth and tongue; the latter of which smelled like violent death due to the hardened mucus deposits on top of it.
The surgery went very well. The doctor opined that Taylor will have difficulty speaking for some time because of sores on her tongue and possible neurological effects due to her chemo drugs (akin to causing her tongue to feel deadened and making it hard for Taylor to move it). Frankly, I think her speech has been much better of late and I understand much of what she says now; Kris comprehends even more.
We had wondered if Taylor's next chemo treatment (currently scheduled for Friday) could take place after the surgery so that we would not have to come back to the hospital at the end of the week. No luck. While Taylor's platelet counts were enough for surgery (the surgeon prefers at lest 60k, T's were 66k), they are not enough for chemo (oncology likes counts above 75k). Judging by the amount of blood still in her mouth following today's procedure, I'm not sure if she'll have enough platelets for chemo on Friday. I guess we'll see then.
We've mapped out Taylor's planned chemo cycles and the current schedule has her last chemo delivery on Halloween. It seems so far away. it is.
This upcoming chemo cycle marks a new phase. Taylor will get weekly doses of Vincristine for the next 6 weeks, beginning Friday. They did that back when she first started her chemo and it was not particularly enjoyable. It's hard to say if that was from Vincristine, though, or from the daily radiation. I'm not looking forward to this 6 week regimen. It will be nice when it is over.
The last few weeks have been great. She had her birthday on 5/23. It was only 7 days post-chemo, so we just celebrated at home with family. The following week we had a party at Chuck E. Cheese that Taylor loved. Most of her friends were there and I think she enjoyed being a regular kid again. If only for a few hours.
She is going to spend some time at Mayfield tomorrow with her class. The last time she visited, she absolutely loved it. I think tomorrow will be great, too.
I almost forgot the best by-product of her surgery. Taylor lost 2 teeth! Her bottom, center teeth have been loose for some time, although we did not realize it until the day before her surgery when the doctor pointed it out. During her surgery he extracted them so that their falling out would not cause a problem. The tooth fairy will undoubtedly visit tonight. She is very excited. Another chance to be a regular kid.
Lately, the last 10 days or so of her three week chemo cycle have been great. She's been active, engaged, and happy during those times. We now try to schedule things so that she can take advantage of those times to do fun things, see friends, etc. I hope the weekly Vincristine doses don't change this.
Of course, things aren't all rosy. She still throws up a lot (especially at night) and struggles with the problems in her mouth. Her walking remains greatly affected, although even that has improved. Regardless, she is much better than she was 3 months ago. I hope the same is true 3 months from now.
I'll try to be better about updates. She'll get chemo on Friday so we'll probably do an update at the end of the weekend, or early next week. Thanks as always for your love, your help, and your prayers. We can never thank everyone enough or begin to repay all we've received. Nonetheless, we appreciate it all the more.
