Re-Entry from Beach Life

This is why I haven't blogged for a while: Laundry.

We're in the midst of re-entry back to normal life after vacation. Hopefully the exhaustion we feel is a good indicator of a great vacation! (Also, our beach house didn't have internet---a blessing and a curse.)

We had a wonderful time at the beach, being with my parents and siblings and all their children. Our buckets were filled. Of the 13 grandchildren, William is the oldest and 9 of them are boys. It was wild and crazy and simply marvelous.Most of the days were cloudy and overcast in the morning before the sun made an appearance for the afternoon. This was perfect for William. He was able to run around in the sand and surf without being too uncomfortable or restricted. Due to one of his current prescriptions, his skin is very sensitive to the sun and he must be covered up and slathered up.

By 11 AM he was usually exhausted and retreated to the beach house. The kayak usually coaxed him back out in the late afternoon. It was wonderful to see him be active and happy.

Ryan, William, my sister, Natalie, cousin Sam

His main disappointment was not being able to boogie board and get all the way in the water. Ryan helped him with the next best thing, but standing on a board in shallow surf doesn't give the same thrill.

Early morning crab hunting!

Sunset s'mores!

Medically, things went as smooth as expected, but what we expect is not smooth. UCSF needed additional labs before we left for Newport to make sure William was recovering from his treatment appropriately. His labs earlier in the week showed a few mildly surprising numbers. I drew labs on our way out of town and dropped them off at the hospital lab on Friday morning per instructions. On Monday morning at the beach, I got a call from UCSF explaining that the hospital received the correct orders for labs, but ran the wrong tests. New labs were needed. Luckily we're not new to this sort of inconvenience and I packed the necessary medical supplies needed for more labs, just in case! I spent most of the day making phone calls, leaving messages, and waiting for call backs with insurance and the hospital to get everything in place so I could draw the labs and drop them off locally and then insure the correct results were faxed to UCSF. It all came together and his lab result were perfect. His ANC was back up and everything looked typical. Phew!

My Beach Boys

Rites of passage: ferris wheel ride, ferry ride, sand burying, eating Balboa bars!

Last trip to the pier before heading home. All boys sporting their shark tooth necklaces. (Dad's idea, not mine.)

So I'll finish the laundry this week (cycling it all isn't a problem, it's getting it folded and put away that kills me). Then William and I pack up again and head to UCSF on Monday for another week of antibody therapy. Hopefully the hospital has a good view of some fireworks! (Holidays and hospital stays seem to be our thing.)

Beach Countdown

William returned home Friday night. As usually, he's tired, a bit cranky, and still skinny. But we're all under one roof and we call that a win!

The official countdown to the beach has begun. I can't even begin to describe the many emotions involved in getting out on this vacation. It will be our first vacation in over 18 months where we will all be together. Well, except for our last minute trip to Monterey for 2 days back in October, but that doesn't count because we stayed within the allowable proximity to the hospital. The weather better be nice because I missed out on last summer's glow and I think we are all due for a little sun therapy. And water therapy because that's really my peace of heaven---swimming in it, gazing at it, listening to it, smelling it. Ahhhh.

I love this:
"The cure for anything is salt water---sweat, tears, or the sea." --Isak Dinesen

I'll be packing an arsenal of medications and medical supplies and hoping it will get little use, as usual. William's labs were a little strange on Monday (surprising dip of ANC, but 2 also different ANC readings off the same blood sample, but performed in different labs), so I'll be drawing his labs on Friday morning and we'll be swinging by the hospital to drop off the blood at the lab. Hopefully this will be all we see of the hospital during this trip. Cameron's fingers are down to just Bandaids on each finger. He still can't go swimming until next week and it looks obvious that he'll loose the nails, but for the moment they are still intact. His fingers tips are still swollen, but all is good and he continues to play hard!

The boys are all excited to see their grandparents, aunts, uncle, and cousins and go boogie boarding. I couldn't help myself and indulged the boys in matching swimsuits and rash guards. I do this every year. One day they will no longer let me dress them alike and know it is coming soon, but until then.... I guess that's what happens when I don't have a little girl with whom I can play dress up!

Beach, here we come!

Never a Dull Moment

This week has been much better in many ways, but the element of surprise still lingers. William is tolerating this round of treatment much better than last time. The Neurontin is doing the trick with any neuropathic pain, his blood pressure is not dropping nearly as often as last time, and he managed to gain just enough weight to avoid the dreaded NG tube. He continues to spike fevers, but they have been manageable and have only delayed treatment once. He will finish the antibody infusion mid-morning and the IL-2 mid-afternoon and then he and Ryan will high-tail it outta there and should be home at some point Friday night. We maintain a healthy optimism tinged with very low expectations of Friday evening traffic out of the city.

William's weight, or lack of, continues to be an increasing concern. The threat of an NG tube still lingers, but we'll keep shoveling in the calories as best we can. Heavy cream in the Costco sized carton is our secret weapon! I think the miracle in this whole adventure will be if we can get William to gain weight and not give in to weight gaining ourselves.

Being home with the other boys has been almost surprisingly easy. It's been so good to be able to focus my attention on just them and let them have "fun mommy" back instead of "stressed out mommy." We've gone for bike rides, swam at the pool, played at the gym, watched movies, stayed up past bedtime, eaten ice cream, and just slowed down the pace of life. I've enjoyed not having to worry about William...has he swallowed his pills, eaten enough food, drank enough water, taken his temperature, washed hands, completed some schoolwork, gone to the doctor, changed his dressing, hep-locked his Broviac.... I am so grateful for the one-on-one moments I've been able to have with each of my boys to remind them that they are loved so much.

Tonight I was fortunate to spend some real one-on-one bonding time with Cameron...at Urgent Care. I wonder at what point they start to greet me on a first name basis? Cameron got his fingers smashed in a door at church, the heavy solid doors we don't have in our home. I haven't pieced together the accident scene yet, but his fingers were on the hinge side. It was a bloody mess and 3 fingers fell victim to the door. His pinky nail split across the center and the ring and middle finger got the nail root ripped out of the nail bed. The pinky should seal up and heal on it's own, but the other two were numbed while the doctor worked to push the nail back under the skin. It took a bit of work, but the doctor got them tucked back in. Cameron was an amazing trooper and watched the whole thing with interest. Near the end, and only because he couldn't feel the pushing and tugging, he even cheered the doctor on! "Oh, you almost got it that time! This one is harder than the other one." We all had a good laugh.

He'll be bandaged up for the next 5 days or so and can't use his hand at all for fear of popping the nails back out of the nail bed. (gag) He's excited for his splint, glad it's not a cast, happy it looks a bit like a cast, and anxious to have his first dressing change (because William gets dressing changes).

The following picture is graphic and may not be suitable for all audiences, particularly those who can't handle blood. Perhaps I should have more sensitivity, but I don't. So, enjoy!

The middle finger has the best visual of the exposed nail root.
See the white looking corner on the right?
I dare you to click on it for full resolution and then zoom!

All bandaged up!
Hey, Danny, bring back any memories?
Your finger has been requested as a show 'n tell next week!

Round 2 of the Antibody Treatment

Last week William spent Monday and Tuesday at UCSF under observation while his IL-2 infusion was started. He was then sent home to finish the remaining time of the continuous 96 hours of infusion. A home health nurse came to the house each day to take vitals, draw blood for labs, and change out his infusion bag. All stuff I could have done for free, but sometimes we just follow the rules. He received a low-dose of IL-2 which is basically a drug that helps boost his immune system in preparation to receive the antibody infusion starting tomorrow (Monday). Remember, the antibody flags the neuroblastoma cells as bad so the body's immune system can attack and kill them. All went about as planned; William was tired, felt a little crummy, and struggled to eat large quantities of food to gain much needed weight. Then the unplanned hit. When his infusion finished and I disconnected him, he spiked a fever of 103 degrees F. This can be normal due to the IL-2, but we can't take chances that it could be an infection elsewhere. We called UCSF and then headed to our local hospital where William and I spent a leisurely 5 hours getting antibiotics and labs drawn. Ryan and I were supposed to be out of town on a one night getaway that night, but our plans and babysitter fell through the day before and we couldn't have been more relieved and happy they did!

In the morning, Ryan (it's his turn) and William will be heading back to UCSF until Friday to get the antibody again. However,William will also get a high dose of IL-2 at the same time. The two drugs do not play nice. We've been warned it will likely be even more unpleasant than last time, but we're switching up some of the pre-med dosing and adding in an additional pain med that is more specific to neuropathic pain, Neurontin, in hopes it will go more smoothly.

The only other anxiety causing event is the probability of an NG tube for feeding (up the nose and to the stomach). William started taking an appetite stimulant, Periactin, this past week, but we have yet to see striking results. The doctors feel he needs to gain more weight in order to better tolerate his treatments. Ryan and I agree. He is teetering quite close to his lowest weight again and that ain't much. So although William has serious aversions to tubes of any kind shoved in any orifice, (he's a smart one!) we've explained that it may happen and it will help him feel better overall. He's a trooper and made only one request: Versed. See? He really is smart. He can request drugs by name that prevent any memory of events!

Here's to another week of hospital living. May it pass quickly and be uneventful.