Thursday, September 7, 2006

September 7th - 10th: Finally Back Home & Gel Cap Humor


Parent’s Note:

I’m not sure where to start except to say first of all that Keith is home and we are together as a family under one roof for the first time since August 9th. Yee-Haaaa! A very busy day indeed and we are all exhausted, especially Keith who wasn’t able to rest at all today and just crawled into his own bed at 10:30pm.

Earlier in the day a couple more tests needed to be performed before he was discharged – an audiogram and a bone scan. The audiogram results were great and the hearing loss he had when he was admitted has gone away (although it is something that will be watched as chemo can cause hearing problems) and the fluid behind his ears is gone – seems like it might have been simple swimmers ear. The bone scan required injecting an isotope and waiting a couple of hours before taking the actual scan which took about half an hour where Keith couldn’t move at all. The results will be used to corroborate the CT scans taken earlier.

We spent some time with the discharge nurse going over all of the meds and protocols that we will need to administer at home, then packed up, waved goodbye to all of the 5th floor nurses and headed for home.

Keith was so excited to be in a car again, going home. As advertised he wanted nothing more than to see Kirby again and we talked about that a lot on the drive home. When we arrived in our driveway, welcome banners from his friends and balloons greeted Keith and that made him very happy. Then he headed upstairs to locate Kirby who crawled out of his daytime hiding place to welcome Keith. A couple of new photos of both events should be uploaded soon.

Later around 8pm several large boxes of medical supplies arrived followed later by the home nurse assigned to us. She helped us sort through all stuff and showed us how to set up the overnight nutrition pump. She will return again in the morning to go over many other procedures with us including infusing his first dose of G-CSF, a stimulating factor that helps regenerate white blood cells.

I think all of the activity and excitement along with the anxiety of seeing all of the equipment now in our house really hit Keith hard toward the end of the day and he seemed sadly fragile again. I know he will rebound in the morning with a good night’s rest but in one of those rare moments when he dropped his usual stoic facade he asked his mom 'Why can't I just be a regular kid?' It’s a really tough question and one we’ve struggled with ourselves many times over the last month.

Still, we are home for a couple of weeks until the 24th of September (unless something happens requiring intervention) when Keith will be re-admitted for the third course of chemotherapy. It is great to be home again!

FRIDAY, SEPTEMBER 08, 2006 10:02 PM, PDT

“All of the drawings of Kirby that my friends did in art class are really cool. Oh, I also barfed up my feeding tube”

Parent’s Note:

Ok, so I’ll get to the second part of Keith’s remarks a little later.

Keith had a good rest last night in his own bed and as expected felt much better in the morning. After reviewing the disconnect procedures for the feeding pump, I left to catch up at the office. Josie met with Susan, our assigned home nurse, and together they set up the infusion pump and gave Keith his first dose of G-CSF following this round of chemo and flushed his Broviac lumens without incident. Keith enjoyed the rest of the morning and early afternoon lounging around, Kirbying, and eating all kinds of yummy food.

Later he opened a large envelope containing this amazing artwork project orchestrated by Mrs. Kam, Wagner Ranch’s terrific art teacher. She had Keith’s classmates each draw a picture of Kirby and then mounted them all into a large banner. I think Keith was really touched and we have it hanging in our family room where he can see it most of the time. Sadly, Kirby is unimpressed and seems to demonstrate typical feline indifference to it all. Oh well, being fluffy seems to make up for all other character flaws.

Now for the second part. (overly-visual children and sensitive adults may want to skip this part as it’s kinda’ gross..….)

Somehow later in the afternoon Keith became sick to his stomach and somehow the end of the feeding tube that is not supposed to see the light of day was now hanging out of his mouth. That’s not the gross part. The gross part is that if you recall seeing some of Keith’s recent photos you will notice that the other end comes out of his nose. I think you see the problem here. Anyway, Josie remained pretty calm considering Keith was covered in barf, gagging and saying he couldn’t breathe. She contacted the hospital with the phone number we were given should such an incident occur, was connected to one of those lovely pre-recorded messages with no option that was particularly useful given the circumstances (if you need to make an appointment with one of the ….. press 1, if you need to discuss insurance matters press 2….. in a really, really slow delivery). Ok, she panicked a little here and pressed 5 thinking that was the correct number having read it somewhere in all the literature we have received. It was not correct. Start over. She eventually spoke to a live human who transferred her to someone else who recognized the problem, and talked her through the necessary steps to extract the tube. She dropped the phone, pulled out the tube (I'm simplifying here for obvious reasons), and then took Keith who was now back to his calm, cool and breathing self again into the bathroom to get showered off. And we thought being home would be more relaxing…

I’m amazed how well Josie and Keith worked together. When I returned home all I had to do was change Keith’s Broviac dressing. So what this means is that Keith has only one tube left poking out of him and about 100 pounds of medical supplies – an IV pole, a pump, 75 cans of liquid nutrient, and a large box of feeding bags and tubes are basically useless to us now. Keith will have to eat, eat, eat on his own. Bring on the white bean chicken chili.

Speaking of which, we have really been enjoying the dinners and goodies that our friends are so kindly leaving on our doorstep. I don’t think we can thank you enough.

Oh, and what Keith's uncle Chris failed to mention in his guestbook post recently was that he was more than happy to spring for anything Keith wanted from the Apple Store. What a great uncle.... (wink)


“I want to do something today” Keith

Parent’s Note:

Keith woke up before I did. I know this because I recall hearing “Kiiiiiirrrrrrbbbbbbeeeeeee” coming from Keith’s room down the hall around just after daybreak. I seem to also remember Kirby responding with several loud meows, although I admit it’s all a bit fuzzy…Kirby seems to enjoy exercising his vocal chords at this time of day every day. And yes, he is as loud as he is big.

Keith was in a great mood and continued to feel well all day long. His statement indicated to us that he wanted to get off the couch and be a ‘regular’ kid. That meant sitting with Scott as he played ‘World of Warcraft’, getting out of the house and walking to Phil, Ben and Teddy’s house next door (and back), and planning out the day’s food menu for the rest of us. He decided we should have grilled salmon with capers and baked potatoes for dinner. It was a close toss up between that and Indian food. He ate a bunch today and I think not having that annoying feeding tube in his throat has helped his appetite. I also think that just being home and with his brother and cat have done more that any medicine to make him feel better.

Susan stopped by around 11:00 to walk us through the G-CSF infusion one more time and more or less certified mom and dad as competent (read: non-dangerous) to continue these injections without her supervision. There were no major incidents today worth speaking of so this really was just a regular day at our regular house for an almost regular kid. We’ll take a whole bunch of these days, thank you very much.

Keith has become comfortable with swallowing relatively large gel-cap medications and that has been a lifesaver for us because he can’t stand the taste of any (ANY!) liquid medicines. Still the taste of a prescription pill in his mouth is cause for a lot of anxiety for Keith. So we have improvised by crushing up his medications and filling empty gel-caps that he can manage pretty well. Now trying to fill a gel-cap is not as easy as you might think, and I’ve been spending around 30 minutes a day just trying to get the day’s medicines into these little things using creased wax paper. Since she thrives on challenges, we sent our friend Liz Chaney on a challenge / dare mission to ‘find a better way’ to fill a gel-cap than creasing some wax paper and tapping the powdered pill into that insanely small opening without half of it winding up on the counter. We both thought that pharmacists must have some sort of device that can hold the empty half of the gel-cap upright (I’m using a ¼” thick note pad with a punched hole in it) while some sort of funnel efficiently loads the cap. Surprisingly, she learned that pharmacists use creased wax paper and have no special gizmos. Now I know why drug costs have spiraled out of control… and, oh my god, maybe I was meant to be a pharmacist instead of an architect! I think a call for entries is in order…

This is an anniversary for us of sorts. It’s been one month to the day since that surreal call from the doctor’s office to head to the emergency room.

SUNDAY, SEPTEMBER 10, 2006 11:12 PM, PDT

Parent’s Note:

Notch up another good day for Keith. He’s feeling great and eating a lot (for him). Not a lot of physical activity (shhhhh! don’t tell the physical therapist); mostly just hangin’ with Scott and swallowing pills on 3-hour intervals. He’s really become a pro at taking these fairly large ‘home made’ gel-caps. This is of course a great relief to all and takes a lot of anxiety out of the day.

Granted, we’ve had a good weekend, but it’s time to stop lollygagging. Monday morning involves a visit to the outpatient oncology department at Children’s Hospital Oakland to have a weight check and to draw labs. We should know by the end of day what Keith’s CBC (complete blood cell) count is including his ANC (absolute nutrophil count). We suspect his counts have decreased to the point where we need to be particularly careful of his exposure to infection, so he will don a mask for our clinic visit. We’ll let everyone know his results tomorrow night, but it may be best for visitors planning to see Keith to wait until sometime after this week just to be safe.

Tuesday will involve a visit to UCSF where Keith will receive a special isotope injection followed by another visit to UCSF on Wednesday where he will undergo a special scan called a MIBG (metaiodobenzylguanidine …try saying that 3 times fast) that is tuned to detecting the specific areas where his neuroblastoma cells have spread. The actual scan takes about an hour. Apparently UCSF is the only facility in the greater bay area that has such a specialized scanner.

We’re pleased that Keith’s doctors have actively solicited treatment protocol opinions from pediatric oncologists at other noteworthy institutions both in the bay area and nationwide. From what we can tell so far researchers and practitioners in pediatric oncology seem to be a pretty collaborative bunch.

Sorry for the dry entry tonight, maybe I'll squeeze in some more gel-cap humor tomorrow.

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