Fudging the Line for Summer Fun

Is there really a line? Perhaps, but it seems harder to see these days. This whole isolation thing is getting old. The only precaution we really seem to obey is avoiding enclosed spaces with lots of people. But we kind of cheated that one by going to IHOP one night for dinner. We justified it because we were the only ones there. And we did sneak William in for sacrament meeting on Sunday (1st hour), but we sat in an adjacent room by ourselves where it was wired for sound.
So William and I are still waiting anxiously to hit the theater for Harry Potter 7 Part 2. I suppose the longer we wait, the smaller the crowds.

The line is also getting fuzzy because this past week has seen the return of a William we haven't seen in 15 months. He's been very active, borderline hyper at times. We took the family to a Rivercats baseball game (minor league team feeding the Oakland A's) last Thursday since we couldn't see the H.P. premier. Sigh. Ryan was given 4 tickets from a co-worker at the last minute (he was going to H.P). We decided to all go and buy 3 more tickets to sit on the lawn. Besides, the weather was so cool all week, it seemed sinful to wait a few weeks so we could enjoy a game in 102 degree heat! William was so sad at first and when we told him he was coming too, he almost didn't believe us. He is so used to being left out or left behind. William, Soren and I took the lawn seats (away from the crowds) and Ryan and the other boys sat in the "good" seats (in the crowd). By the end of the game, William was on cloud nine and the other boys were whining about not getting to sit on the grass. William made it onto the jumbo tron 4 times for his dancing! He just couldn't stop dancing around each time the music played!

Let's hear it for the cheap seats!
July 4th Giants Game
(cheap seats get quite the view!)

Dinner with William after the game!

William misses swimming. William really misses swimming! There's not much I can do to justify him taking a little dip with his Broviac because it's not worth the risk of winding back up in the hospital. This is how we protect his line from water: Aquaguard. For the bath or shower, we usually use two large Tegaderms, but I'm hoarding those right now and I have to do a dressing change after using those because they stick to his dressings.
To fudge the swimming line, I found a website gem in the FamilyFun magazine while sitting in the dentist's office. Mine lacks the artistic touches from the creative genius in the magazine, but my boys wouldn't fully appreciate the time and effort to go that far. Nor do I have the patience. Here's what resulted: Kid Wash!

A Little More Isolation

Today I need to repent. No need to squirm in your seats. Sorry, folks, it's not that juicy.

As I sat in church today, knowing I haven't blogged all week, I felt a little guilty. Let me explain. I'm over the guilt of going to bed over blogging or spending more time with my family over blogging, or even indulging in a late night bowl of ice cream over blogging. I know I've mentioned in the past when there are gaps in the time frame of posts, things are good and there is nothing significant to report. I need to repent of that statement. Today I realized those are the times I need to express gratitude for blessings because it is during the times of peace that I am reaping blessings.

William's treatment this past week was amazing! Did I really just describe a crummy cancer treatment as amazing? Yikes. But it really was amazing. William was pleasant and comfortable and active. Yes, active. He actually anxiously got out of bed to go to the school room and All-Stars Room (technology room). Okay, so he went to the school room once and the All-Stars room every day. But that is a huge feat for him. He even asked to take a walk down the hall one night around 10 pm. Weird. It was a funny site to see him jump out of bed and start unplugging his IV pole and disconnecting his heart rate and oxygen saturation monitor. A few times I had to remind him he needed to ask the nurse first. But we all loved seeing him that way. One nurse said, "I've never seen him this way. It's great how he seems so normal. We don't get to see that very often." We are truly grateful for the good days, the miracle drug, Neurontin, the Ipads in the All-Star room, Cocoa Puffs and whole milk on the kids menu, attentive nurses and doctors, fogless nights in SF and a room with a view of fireworks, Jamba Juice, EMLA cream (numbs for shots), sisters who babysit, family and friends who pray for us, and a loving Heavenly Father who reminds us daily we are loved.

William's pain was very well managed this time around. He only complained of discomfort on the last night of the infusion. He probably wasn't even paying attention because he didn't realize it until right after he finished Skyping with James. Oh, the value of a good distraction! After a bolus of pain meds from the nurse and pushing his PCA button twice, he was fine. He had no fevers and his blood pressure, when it got low, remained close to the guideline parameters and usually a little movement and waking up did the trick. Whew.

The only significant complication didn't have anything to do with his treatment. His broviac, central line in his chest used for infusions and blood draws, has been acting rather finicky the past few months, making it difficult to draw blood. We often have to make William try myriads of different positions: hands up, head turned left, head turned right, lean over, lean back, lean sideways, stand, sit, jump. One time, while drawing labs at home, Ryan actually held him over his shoulder and we tried to make him upset. I know, that sounds awful, but if the problem is due to his blood pressure, being upset seems to increase the blood flow through his veins. It actually worked that time. We've had some occasional success with trying to keep him well hydrated, but that has also proven not to be a guarantee. Clotting does not seem to be the issue since it flushes successfully. A possible culprit is the tip where the flap-type mechanism is located inside his vein gets lodged against the wall, in the tissue of the vein where the blood isn't flowing as freely. Some of his labs have been inaccurate because the quality of the blood sample is not great. The last day in the hospital, we finally resorted to poking him in the arm the old-fashioned way to get accurate labs. William wasn't a fan, but he's done a lot of tough things and he gets shots like a champ. Hopefully his comfort level with this method of blood draws will improve. The alternative, like removing the broviac and replacing it with a PICC line in his arm for the remaining few months, seems more traumatic than the inconvenience of occasional pokes.

Labs were also drawn for the progress of his bone marrow transplant. As I think I mentioned in the previous post, the result from the first set of labs would determine whether the function test would be done and if the isolation precautions could end. His labs looked fantastic and William's numbers were actually higher than the doctor had expected and he's ready for the function test. Yay! Unfortunately, the doctor became concerned that the antibody infusion may skew the function test labs and it is a very expensive test. Also, when we had talked previously, he admitted he read the dates wrong when thinking we could end the isolation pending good numbers with the first test. He read the bone marrow harvest date (Aug 1) instead of the transplant date (Jan 31). Boo! Since William hasn't met the 6 month mark yet, regardless of the great initial labs, he asked that we endure the last 3 weeks of isolation before the function test and the end of isolation. Rats.

While sharing the news with Lisa, she offered encouragement (because she knows I was trying to justify ignoring the doctor's request). She compared this to the last 3 weeks of pregnancy. They are often the hardest weeks, but in the grand scheme of things, they fly by. Perhaps she's right, but I reminded her that all my babies were 2+ weeks early!

Next item of business:

How long is William's hair?

Long enough to make a faux-hawk!

Happy Birthday, America!

In honor of the 4th, we all made a valiant effort to wear red, white, and blue. (But several of the boys mixed it up with Giants gear). I wore my Cons. I only do this a few times a year. I also made my first venture into the world of skinny jeans. I paired them with the Converse and William said, looking confused, "You look too young!" Clark commented, "You look cool, Mom. You look just like a teenager." I'm still trying to figure out how I feel about these comments. Perhaps I need to just stick with my fashion safety motto which tells me if I wore certain styles the first time around, I'm too old to wear them the second time they become fashionable!

Last night we had a fun "court/neighborhood" soiree with fireworks and ice cream sundaes. We have fantastic neighbors who were willing to shoot off fireworks a day early with us since William is in the hospital today. The boys loved it and couldn't believe how late they got to stay up! And I overheard Clark excitedly asking, "This is playing with fire, right?" Oh, how he makes me nervous for his teenage years! I'd post pictures, but the camera is with Ryan. Read on.

This morning we packed up two cars and headed to the city. William and I headed to UCSF and Ryan and the boys headed to Chinatown, trolley rides, and a Giants baseball game. It's a fun day for most. Otherwise, this begins round 3 of 5 for the antibody therapy. Hopefully this one is reasonably uneventful and the pain is well managed like last time. And we hope to catch a glimpse from our window of the fireworks at Fisherman's Wharf.

William is approaching his 6 month isolation mark, July 31, and we are getting anxious. He's actually closer to the 5 month mark than 6 month mark, but our recent beach vacation really has us craving the completion of his isolation. So I called the BMT office this past week to let them know we would be in SF this whole week and asked if it would be possible to do the blood work now to save me an additional trip to SF. Can you believe I'm trying to avoid a trip to SF? I also mentioned we'd be back at the end of the month too, but I mentioned it more as a fall back plan. After discussion with the parties involved, they agreed to do the preliminary test and if the number is high enough, CD4 >200 (it was 94 at 3 months), they will proceed with the function test. The function test identifies not only if the B and T cells have recovered in numbers, but if they are functioning properly too. The blood was drawn this afternoon and we'll have results tomorrow. If the CD4 is >200, all isolation precautions will likely be lifted, even before the function results are in. We feel like the horse nearing the stable; we can smell the finish and we know how the road is supposed to look from here, but we still have to pass required landmarks. Clip, Clop, Clip, Clop!

Ryan and I also celebrated our 12th wedding anniversary this past week. Last year we ate take out together on a grimy picnic table in front of the hospital. This year we did the happy dance we weren't in the hospital, (although I did take William to the clinic and the rest of the boys to the dentist that day) and then we headed to they gym where we put the kids in child care and after a treadmill workout, relaxed in the hot tub, sans children! Sometimes it's nice to just celebrate things by slowing down the pace.

Happy 4th! May your day be filled with good food, good company, some sparkly lights, and the freedom to enjoy it all!

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.