It's an Anniversary

One year ago our lives drastically changed. It was a Friday. It was the last day of school. The doctor was seen to gain peace of mind for seemingly abnormal swelling in William's abdomen. We got the call. The shock hit. The tears came. We didn't sleep.

It's been a long year of heartache and joys that we could otherwise never have imagined. William has come a long way and he's winning his battle. We have all grown and changed and have a greater appreciation for some of the simple things in life. Our family bonds are stronger and our faith in God is deeper. We have felt the power of prayer and fasting in tangible ways that lightened our burdens during difficult times.

Several of you often ask how William is doing and how he is managing all his aggressive treatments and crummy side effects. William is amazing. Sure, he has some rough days and he asks how much longer he has to do this. He cries and misses being able to do all the things he used to do, but he has incredible patience and acceptance of his conditions. In a recent talk given during April 2011 General Conference, Kent Richards gave a beautiful talk on pain and the Atonement, "The Atonement Covers All Pain." As a surgeon, he talked about the necessity for him to inflict pain daily and then try to control and alleviate it. He said of little children,

"[they] are often more naturally accepting of pain and suffering. They quietly endure with humility and meekness. I have felt a beautiful, sweet spirit surrounding these little ones."

He continues:

To all of us the Savior said:

“Behold, ye are little children and ye cannot bear all things now; ye must grow in grace and in the knowledge of the truth.

“Fear not, little children, for you are mine. …

“Wherefore, I am in your midst, and I am the good shepherd." Doctrine & Covenants 50:40-41, 44.

I think this accurately sums up William's capacity to endure. He is humble and meek, patient and accepting. He knows he is loved by his Savior and his many friends and family members and all are doing all they can to ease his burdens.

The same goes for my other four boys as well. They are equally resilient with the constant disruption to our family routines. They often ask when William will no longer have cancer. They pray for his continued improvement. They refer to the past as "before William had cancer" and refer to the future as "when William doesn't have cancer anymore." And they say it as if that's the way every family references the past and future. They've seen the mini doctor clinic set up in our master bedroom and witnessed William experience many unpleasant things in there without crying or wincing (well, shots are never fun, but there's no more fussing about them) and they are amazingly brave when they have their own minor injuries or need shots. The boys often don't know who will pick them up from school, but they've been so well cared for they usually only complain when it's actually me picking them up! They are champs at regularly washing their hands. They still love Macaroni & Cheese (we've eaten a lot this past year), and like other boys, whine and insist on having milkshakes when William gets them.

So here we are, one year later. We're a lot more tired, full of more gratitude, more medically savvy, a few pounds heavier or a few pounds lighter, but still taking it day by day and checking back into the hospital on Monday...again.

May 2010

May 2011

Today

A few days ago

Hospital vs. Junior High

What could make you want to repeat junior high? Does anyone want to? I was the new girl, we'd just moved from California. It was the '80s. I just got braces. Nothing is flattering about it or particularly memorable, except for the many embarrassing moments.

This blog helps me remember some of the things I would otherwise forget, whether I want to or not. The rest of the days spent in the hospital this week are already a bit of a blur. William spent most of it either in a morphine induced sleep or trying to manage the pain while awake. He did manage to briefly sneak out of his room with his medical student buddy, Josh, to play the Wii in the All-Stars room for 30 min. (A room for older kids to play video games or be on the computer.) Technically he probably shouldn't have left his room since his immune system is not fully recovered, but it was one of those things I just let slide for the mental well being of us both.

Each day we had hopes it would get easier. It didn't. Each day something different decided to make life complicated. And keep in mind that the infusions ran through the night, so most hiccups involved waking up. The infusions were often paused for an hour or two to administer albumin (blood product) and/or additional fluids. He received a blood transfusion one day before the infusion started in an effort to get ahead of the blood pressure issues. Unfortunately, we still had issues that night. He often hit temperatures just over 103 degrees. The toughest part was managing his pain during the night because he wasn't pushing his morphine button in his sleep. Imagine that! The nurses would usually give him an additional bolus of morphine during the night and in the morning as needed.

By Tuesday, William stopped eating except for sips of apple juice to take with his Tylenol and some watermelon at lunch time. He couldn't even be tempted with Jamba Juice. One afternoon his doctor came in and saw him with his watermelon and laughed saying, "No wonder you're not gaining any weight! Where are the calories?" William actually gained 5 pounds in the hospital, but it was all fluid retention and it has since disappeared...as well as 3 more additional pounds from not eating for nearly 5 days.

Thursday was a lovely day. The morning began with vomit, not a typical side effect to this treatment. But it was nice of William to do his best to add excitement to the day, my birthday. That evening, my boys called to sing me "Happy Birthday" and I had to hang up on them. I'm horrible, but it had nothing to do with my mood for spending the day in the hospital. Then my husband called back to see what was wrong and I had to hang up on him too. William had just woken up in a delusional fit and was sobbing. He insisted he needed a sticker right away. He wanted the kind he got when he arrived (he hadn't received a sticker when arriving). He was mumbling a bunch of nonsense, his fever was high, his heart rate racing, and the nurse and I were trying to figure out what he needed. She went and found a Snoopy bandaid and William insisted I hurry and put it on his hand. I did and he suddenly relaxed and all was fine. The boys were all in bed when I finally had a chance to call back. Memorable day.

William and I arrived home Friday night just after the rest of the family had left for the Father and Sons camp out. William and I were excited to have a quite house so we could sleep and rest. Unfortunately, neither of us slept well as my body was freakishly used to waking throughout the night and William was still waking with some residual nerve pain. I spent Saturday cleaning and starting laundry and getting ready for 5 dirty, tired boys to return from camping.

Today, Sunday, any associated pain from the treatment seems to have ended. He started eating a little, but only enough to continue causing me stress that it wasn't enough. I had to put on my tough mom, you're-still-my-son-with-the-same-expectations-as-before hat and tell him he had to eat 4 bites of lasagna before he could leave the table. This was a very lenient expectation compared to what I was enforcing with the others. He sat in his chair and cried and worked himself up until he suddenly threw up. I cleaned him up and said he was done. Then he asked dad if he could have some candy. Dad said sure. What? Was he not sitting at the table through this whole ordeal? He was obviously not thinking, right? I piped in rather quickly and not very amused and said, "No way. But you can have more lasagna." He declined and left the room. I'm bad cop today. A while later I agreed to make him one of my high calories milkshakes, but only because I'm desperate to get some nutrition in him. It is really hard to navigate parenting with a smart, sick child and very smart siblings soaking it all in too.

One day I'll look back on all this and have a lot of mixed emotions. I always thought repeating junior high would be an awful punishment, but I think I'd rather repeat junior high than this. I could change so much about junior high to make it better, but I'm not sure what I could change here to make it better. Like junior high, it's just one of those tough things in life we just have to get through and some how, down the line in life, we're better people.

It Ain't Fun!

The antibody therapy has begun and it ain't fun.

Here's a quick overview of what is happening:

• Daily shots to boost his white bloods cell count which fights bad cells.
• The antibody in infused over a 10-20 hour period.
• The antibody attaches to the neuroblastoma cells and flags them as "bad" to the body. (Since the body produces the cancerous cells, the body's immune system doesn't recognize it as bad or foreign on its own)
• The white blood cells then seek and destroy the flagged cancer cells.

The infusion affects the nerves and can be quite painful. The key is to manage the rate it is infused and the dosing of pain medicine. It cannot be infused faster than 10 hours or longer than 20 hours and a new round starts every 24 hours for four days.

William started out as the trooper he is. This is always a concern because he is so tolerant of pain because he is so used to feeling crummy. The rate of infusion started at 5 which is the 20 hour plan. 10 is the max rate for 10 hours. (I don't remember the units they refer to, but you get the picture, I hope). William was doing well and after an hour, was up to 9. The nurses were impressed and checking his vitals every 15 minutes when suddenly his heart rate skyrocketed and he started moaning and grabbing his chest. Several nurses hurried in and stopped the infusion, reassessed his vitals and explained that he needed to push his pain button whenever he felt pain. The sweet little boy just though he could tolerate it. The rate was decreased in increments, but within another hour, due to his pain, we were all the way back to 5, where we started, in order to get the pain moderately under control.

We coached him on how to push the pain button often and he improved. However, sometimes he was pushing his morphine button more than it actually dispenses the medication and getting frustrated that the pain wasn't decreasing. Then he would stop pushing the button thinking he would just have to ride it out. What a trooper! I keep having to remind him to keep pushing it because it will eventually dispense. It has parameters set to only administer meds every 8 minutes to avoid an overdose.

So obviously, Monday night was rough and neither of us slept much. William made up for it by sleeping until after 3 PM today. He woke up to eat a bit and watch part of a movie. Since the rate was decreased so much and even stopped for part of the time, he was given the antibody over the full 20 hours and didn't actually finish the entire amount. He had a brief break before round 2 started up. So far he is tolerating it well. Sleeping through it helps. His basal morphine (continuous infusion) has been increased and he gets more each time he pushes the button. The rate of antibody infusion is being set no higher than 8. He's at 8 right now and holding.

The side effects he is experiencing are normal: fevers, pain, swelling, and low blood pressure. He is getting precautionary antibiotics because of the fevers and additional fluids to help the blood pressure.

Last night during all the chaos and discomfort, I had a mommy moment where I second guessed our decision to be part of this treatment. I had to remind myself that we have had feelings of peace when making this decision, knowing that it would likely be hard. Ryan and I have felt strongly that we should fight this cancer as aggressively as possible since it is a hard one to treat. If his cancer returns in the future, we will know we fought it as hard as we should have the first time around. The nurse must have seen the anxiety and concern in my face because she calmly reassured me that this was all normal and that she's seen this treatment really work.

On a funnier note, I am learning that all frozen/microwaveable meals are not created equal. I think the presidents of these companies should be on the tasting panels. Or maybe they should think about creating tasting panels. Bleck is all I can say about some Tai Pei sweet and sour chicken mess. Thankfully I discovered the Jamba Juice that was under construction across the street during William's transplant is now done. Hallelujah! Although the 4 block walk to the other one was pleasant too. William will be pleased. I'll tell him when he wakes up.

Gearing Up for the Next Phase

It feels like it should be the weekend because I'm ready to collapse. I been catching up on doctor appointments for my other children, continuing William's appts., and fielding lots of phone calls to keep the juggling act going and life running smoothly. Ryan has been traveling for work most of last week and this week and will continue as such for a bit. I really can't complain too much because we have been very fortunate that this past year has seen mild travel for him. (Yes, it was reasonably necessary that way). Thanks, coworkers, for sometimes filling in for him. Tonight when I picked him up from the airport, he said, "I am so tired. I think I hate hotel beds more than the hospital sleep chairs." I laughed and replied, "That's because you weren't medicated!" (Ambien is our hospital treat when possible).

William finally finished the round of antibiotics on Monday for his line infection. Thank you, Thank you, doctors, for letting us finish the last 7 days at home instead of in the usual hospital. I am more grateful than words can express. It looks like William is on track for beginning the next phase of treatment tomorrow (Friday). We almost had a small hiccup at the clinic today when the doctor found thrush in William's mouth. Thankfully the thrush and the medication to get rid of it don't interfere with the antibody therapy.

I spoke with UCSF this week on several occasions, but the most significant, noteworthy information is William's bone marrow still appears to be free of cancer cells, and the metastatic legions in his liver all appear to be cancer free. We officially heard the word REMISSION! The doctor referred to it as a "good remission". Now we hope to make it a "full remission" with the completion of all his treatments.

Next Phase:

• Friday--begins subcutaneous shots, GMCSF. I'll administer one shot a day for three days before we head to SF. This is basically a "helper medicine". (I'm too tired to dig up the paperwork to go into more detail and most of you don't care anyway.)
• Monday--William is admitted to UCSF to begin the antibody therapy. He'll receive a 10+ hour infusion each day for 4 days. It will be painful during the actual infusion and he'll have the magic PCA button to manage and maintain his comfort.
  
• Friday--he'll head home and continue the shots for a week.
• Somewhere in there he'll start taking the cis retinoic acid (similar to Accutane, but we're not treating acne here). This will give him all the same side effects as Accutane. He won't be sporting a healthy summer glow this summer.
  
• Then he'll be admitted again (just overnight) to receive another "helper medicine"and then hopefully sent home to finish the several days of that medicine, but that will be pending the ability of our home hospital agency to provide a nurse to visit each day to assess William. (Oh, please let this work out so he won't have to spend the week in the hospital.)
• Then we start the process all over again and continue for 5 cycles (1 cycle=approx. 1 month).