Monday, November 29, 2010

Happy 6-Month Anniversary, Cancer

Six months ago, today, we changed. It's a good kind of change in a way no one chooses. So we're celebrating. And nothing says celebration like spending a day with the doctors and nurses we love so much! So we did.

We started the day at the pediatrician's office for Soren's 4-year well check-up. Here's the conversation half way through the immunizations.

Nurse: At least he's holding still fairly well.
Me: Or his mother is really strong.

Soren cried and thrashed and I broke a sweat, but he's now 5 shots richer!

Next, we zipped off to William's biweekly clinic visit to check his blood counts. He had a blood transfusion on Friday so I thought we'd be in and out before school pick ups. Wrong. He is still neutropenic and he needed more blood. Yeah, the blood that takes 3 hours to infuse and managed to keep him at the hospital 9 hours on Friday. I didn't see that one coming. His bone marrow is pretty worn out from 8 rounds of chemo, his recovery time is slower, and the red blood cells are being zapped about as fast as they can replicate.

We headed up to the out-patient floor for blood and earned a private room due to neutropenic status. There are perks, sometimes. Luckily the blood only took a couple hours to prepare and just under 3 more to infuse. (Did I really start that last sentence with "luckily"?) I was kept busy trying to catch the ball that was dropped regarding the scheduling of all William's scans this week. It all got sorted out eventually, but it means we'll be heading to the hospital for appointments each day this week. I'm trying to keep my thinking cap in working order as I juggle schedules and a husband who has to be out of town for a few days.

On our way home, William suggested a stop at Jamba Juice. How could I refuse? It was a celebrating day! He's come a long way these past few months and downed an entire Peanut Butter Moo'd during the drive home; all 470 calories! I can't remember the last time he finished one off completely. I'm doing the calorie happy dance. (William's not allowed to dance with me because he can't afford to burn off any calories!)

I suppose I should admit that we didn't actually realize the significance of today's date until this evening. This is good. So Happy Anniversary! We've made it six months and we're still happy; thoroughly exhausted and anxious for the chapter after cancer, but happy. Cancer may still be a very real part of our existence right now, but we are still smiling, still full of faith, still hopeful, and still thankful for the understanding that there is purpose in all things.

Sunday, November 28, 2010

Staying Put . . . For Now

Last Monday, William and I made it home just before midnight! He was so happy to be greeted by Grandma and snuggled on the couch with her while she read him a book. I wish I took a picture of the two of them with the clock in the background!

My mom and I thoroughly exhausted ourselves the next few days by moving all the boys beds and dressers, sorting through clothes and toys, and completely reorganizing all the bedrooms to allow William his own room. It looks fantastic, functions marvelously, and eases loads of stress in my endless quest to stay organized. We even managed to hide the enormous collection of medical supplies in our master bedroom that hid the fireplace from view. So at least for the moment, our master bedroom doesn't feel like the dumping ground.

We had a wonderful Thanksgiving with my mom, sister, Mary, and her husband, Erik, and daughter, Eliza. We missed not having my siblings, Matt and Angela, join us, but understand the influence of the weather and unexpected trips to the hospital when my dad earned himself an unexpected heart procedure on Wednesday. All is good and excellent doctors and the marvels of the medical field are the overwhelming theme of our Thankful list this year. We truly have hearts full of love and gratitude.

Before my mother's departure, we put away Thanksgiving decorations and put up Christmas decorations. It feels good to have things done as we anticipate many days in the hospital this month and will be commuting to San Francisco as well. The one thing we will miss this year is a real Christmas tree. Each year we drive up into the mountains and cut down our own tree at a small, family tree farm where any tree, any size, is about $30. We love this tradition and the Griswold in us comes out. Nothing less than 17 feet will do. I risk my life each year putting the lights and ornaments on, but it is so fun having an enormous tree!
Last year: Christmas 2009

Unfortunately, William's fragile immune system prohibits us from having a real tree this year. I snagged at 6 1/2 foot fake one for a steal on Friday. It was even pre-lit. I must quietly confess that I am grateful for simplifying this year. But the house won't smell the same.

Otherwise, the biggest milestone for us this week came on Wednesday at midnight. William made it past the previous mark for heading back to the hospital with a fever. But he couldn't let the nurses miss him for too long, heading back in on Friday morning at 9 AM for a routine CBC (blood draw and labs). His ANC was 0 and he needed a blood transfusion. I don't know what the deal is at the hospital lately, but William and Ryan spent 9 hours at the hospital for a 3 hour transfusion, plus any additional time needed to draw blood and run labs. Seriously? The hospital needed 6 hours for a single blood draw and to run labs? Most of the rooms on the floor were vacant! I am slowly learning patience...but will I ever have enough!?!

This coming week is expected to be full appointments getting a new round of scans and another bone marrow biopsy to see how effective the last round of chemo was. (Of course, I haven't been notified of the scheduled days and time yet). The results will dictate whether we show up in San Francisco on the 7th for the MIBG radiation therapy or the consult for the stem cell transplant where we sign all the papers acknowledging all the risks involved. (deep breath).

But for now, we are staying put and enjoying our own beds each night and a cozy little tree tucked in the corner that didn't give me a sore back for days!

Monday, November 22, 2010

The Clock Is Ticking

Finishing up round 8 of chemo is the name of the game today. And hopefully our last in Phase 1 of treatment. The post-hydration should finish around 10 or 11 PM tonight and we are cleared for discharge. The car is packed and we still have 3-4 hours to kill. Tick...Tock...Tick...Tock. I know, checking out near midnight? I'll spare you the obvious reasons why we'll pass on an all expense paid night at Hotel Sutter. (We hit our out-of-pocket maximums a long time ago!)

My mom flew in on Saturday night and got right to work lightening our load. We drove her straight to the hospital and dropped her off to take on night duty with William and most of Sunday as well. And last night, while Ryan was at the hospital, we stayed up until 1 AM talking and rearranging furniture. It's what we do.

With the anticipation of a soon-to-be radioactive son, his ongoing fatigue, and the ever-increasing energy and noise levels of his brothers, we are trying to figure out how to reconfigure the bedrooms and playroom to give William his own room. It feels like a daunting task when all I want to do is sit back and rest for a few days before we head back into the hospital. If only I could just wiggle my nose....

A few months ago I received a collection of inspirational quotes from a friend who has lived through the ups and downs of having a son with cancer. I pause to even say "the ups", but there are some; they are nestled inside the strength we gain, the people we meet, the lessons we learn. I keep these quotations next to my bed because that's where I do the most crying and soul searching. Well, there and in my car, but I shouldn't be reading while driving. I pulled them out to read again last night. I wasn't crying, just needing a feel good read. Here are a few that I like today:

"Enjoy the little things in life... for one day you'll look back and realize they were the big things."

"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain."

"Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart."

"Money can't buy happiness, but it can buy marshmallows, which are kinda the same thing."

Thursday, November 18, 2010

More About MIBG Than Anyone Cares

Our Tuesday meeting in San Francisco was fantastic. Well, as fantastic as San Francisco can be from inside a medical building. Oodles of information was absorbed and we finally feel like we are moving forward into the next phase of treatment. Our main purpose of the visit was to learn about an additional treatment option with I-131- MIBG.
  • What is MIBG? Metaiodobenzylguanidine (because you were all dying to know). MIBG likes neuroblastoma cells and when infused into a patient, it goes through the body and attaches to any neuroblastoma.
  • How does this work to kill the cancer cells? Researchers have found that combining MIBG with radioactive iodine created a highly loaded radioactive weapon against neuroblastomas. The substance attaches to the cells and then destroys its DNA, killing it.
  • Is it a standard form of treatment? No. It has been used since the 1980s, but is still considered experimental because of the relatively small number of children that qualify as high-risk neuroblastoma patients and only 5-6 facilities in the United States have the required lead-lined room to administer the MIBG substance.
  • How does William's case fit into this study? William is a borderline qualifier. Usually qualifying patients have recurrent tumors or are resistant to treatment. William's tumors have been very responsive to treatment, but a small number of cancer cells still remain, keeping him from being labeled as "in remission."
  • How effective is the treatment? After decades of administering this therapy to patients, 35% respond positively, 1/3 remain stable with little or no change, 1/3 lose the battle.
  • How is the therapy administered? It is infused into his bloodstream over 2 hours. He then becomes highly radioactive, so much so that he must be isolated in a lead-lined room for several days until the radiation levels decrease to a level safe enough to be around other people.
  • How is that managed? William may suffer from boredom, but he may love the independence too. Because the nurses have several other patients and can't be overly-exposed, Ryan and I will be his primary caregivers and have to rotate turns in small minute intervals as we are each permitted only 30 minutes of direct contact for the first day. Each day, as his levels decrease, our direct contact time will slowly increase. He will likely return home after a week, but will have to remain 3-6 feet away from anyone for a period of time.
  • How do we feel about it? The side effects are minimal and not much different than what he already has to deal with after 8 rounds of intense chemotherapy. If this therapy is needed, it improves the likelihood of a successful stem cell transplant and decreases the likelihood that the tumors will return. We feel so fortunate to live close enough to a facility that provides this option so we can fight this battle with everything available.
  • What happens now? William was admitted today, Thursday, for his 8th round of chemo. He will finish on Monday night and hopefully be discharged on Tuesday. The week after Thanksgiving he will go through another full round of scans and tests to examine his progress and the existence of any cancer cells. If the scans are clean, no evidence of cancer, he will skip the MIBG treatment and proceed directly to his stem cell transplant on December 13th. If cancer cells are still present, we will proceed to UCSF on December 7th and the transplant will take place 6 weeks later. (It feels so good to spout out exact dates that are still weeks away!)
  • More Big News! We also had the opportunity to talk with one of our transplant doctors. We learned that 2 weeks ago, the findings were announced from a clinical trial in Europe for stem cell transplant of high-risk neuroblastoma. 500 patients were used in comparing the effectiveness of the high-dose chemotherapy administered just before transplant to kill the existing bone marrow. The results were staggeringly obvious in favor of a new chemo cocktail. It was 16% more effective overall: 14% less recurrent tumors, 2 % less toxicity. (That's high in this cancer world). The pediatric oncology field nationwide has already begun to implement this changed course of treatment. William will be approximately the 4th child at UCSF to receive this new, updated course of treatment.
  • Blessings. Clinical trials often take decades to complete. We were quite discouraged by the stubborn cells that have needed more rounds of chemo. However, if William had stayed on his course of treatment and not needed additional chemotherapy, he would currently be in the midst of his transplant, having already received the round of high-dose chemotherapy, the one with a chemo cocktail now deemed less-effective.
  • Sometimes in life we get to see the reasons why and sometimes we don't. For us, this is an obvious time when we feel the hand of God in our lives. I know He is aware of our sweet William and our family. I know he can direct our paths if we have the faith to allow him to work miracles. We still have many hurdles to cross and many months full of unexpected events, but we will make it out better, stronger, more faithful, and more aware of the tender mercies that God gives us to remind us that we are loved as individuals.

Sunday, November 14, 2010

Long Break Brings Long Post

This past week had some highlights that are worth mentioning

  • Platelet transfusion. And perhaps I should add that a platelet transfusion is 30-60 minutes long. I'm still trying to figure out why we had to wait for over 4 hours in the hospital just to start the transfusion. I guess we still need to learn a little patience and flexibility. I do have increased gratitude for a friend that will keep my boys for 4 hours more than expected (along with her own four children)! Thank you! Thank you!
  • UCSF called to set up our consultation appointment for the MIBG therapy/treatment option. We head to San Francisco on Tuesday, the 16th.
  • Bone marrow biopsy. The oncologists and stem cell transplant team will be assessing this result very carefully to see how effective the new, additional chemotherapy was on eliminating the stubborn cancer cells from his left leg bone marrow. I suppose the MIBG therapy team at UCSF will also be very interested since William is one of very few children that qualify for their study.
  • Soren went to the clinic and hospital with me and William. For almost two weeks, Soren will randomly announce, "My tummy hurts. I think I'm going to throw up." We panic briefly, but nothing has come of it. We think it's linked with attention and how we respond to William when he's throwing up. I took him with us for the clinic visit and biopsy in the hospital so he can see where I go and what I do and what William has to do too. It's tricky trying to protect and care for all our children. I know we'll fail at some things, but I hope we'll succeed brilliantly with others, hopefully the ones that matter most.
  • William woke us up at 3 AM feeling sick and then threw up, barely making it to the bathroom. The nausea can sometimes be delayed after this past round of chemo, but he's been doing well and we were caught off guard.
  • He slept until 11:30 AM. We were so glad he got some needed rest, but wish he could rub a bit of that off on his brothers.
  • Clark woke us up at 3 AM to tell us William needed help and had just thrown up all over his bed. Clark is a tough boy, but he gets so worried and scared when William throws up. Clark said, "You need to take him back to the hospital, right?" I love how sweet Clark is, but it makes me so sad that he has to worry about some things that a 7 year old shouldn't worry about.
  • We all went to church together.
Two weeks ago our ward (church congregation) fasted specifically for William and two other children in our congregation, one also with cancer, and one needing a heart transplant. What is fasting? In The Church of Jesus Christ of Latter-day Saints, members are encouraged to fast whenever their faith needs special fortification and to fast regularly once each month. Typically, the first Sunday of each month is designated as fast Sunday. On that day, members who are physically able are encouraged to fast, pray, bear witness to the truthfulness of the gospel, and contribute a generous fast offering to help the poor. We go without eating or drinking for two consecutive meals. The offering should be at least equal to the value of the food that would have been eaten.

William was in the hospital that day, in the middle of a new and additional round of chemo. I want to express my gratitude for the fasting and many prayers offered in our behalf that day. I also want to share some of the blessings we feel we have received as a result of that fast.
  • The doctors offered us a possible additional treatment course that is only available in a couple places in the whole country. It has been effective in many cases in the past 10 years and due to our proximity to San Francisco, we now have more options.
  • We have felt added peace as we navigate a course of treatment that was not anticipated. It is still hard, but we feel confident that we will make the right choices when the choices present themselves.
  • William is eating more than he has the past 5 months. He has gained several pounds faster than he has previously. This is of great significance as he prepares for the stem cell transplant and needs the extra pounds to even tolerate the chemo that awaits him with the transplant process.
  • William was able to make it home for his birthday and stay home since then so we can be together as a family for a longer period of time than normal.
I am so grateful for the staggering amounts of kindness and support we have received from our families, our church, and our community. Many friends have welcomed our children into their homes at a moment's notice. Many, many meals have lightened our load after days spent in the clinic, at the hospital, or just trying to fight the fires at home that have been left unattended. Our home has been cleaned and our yard tidied. Emails, cards, and packages have yielded encouraging words. And countless prayers have been offered.

I am grateful for my faith that gives me daily strength. I am grateful for the knowledge of a loving Heavenly Father who has given us a plan and purpose for our lives. I am grateful for a Savior, Jesus Christ, who knows and understands the heartaches and sorrows, but also the joys. I am grateful for the tender mercies that confirm His love for me and my family.

Thursday, November 11, 2010

The Meaning of Gaps

One day, when I have the strength to reread these experiences, I will know when I was really tired and worn out; that is where the large gaps in days without posting will be. I'm still exhausted tonight as we've spent quite a bit of time in the hospital this week, but we've managed not to be admitted and stay overnight.

Perhaps I'll find some quiet time tomorrow to blog about the week since the kids don't have school; it's a teacher work day. It will be nice not to have to drive the kids to and from school, but who am I kidding? It will be loud and crazy and I'll have to remind myself often how good it is to all be home together for a change. William is doing well. His immune system is finally in the upswing and we anticipate some good days until the next round of chemo starts next Thursday.

Until tomorrow. . . or when I'm not so tired and crashing at 9 PM.

Sunday, November 7, 2010

Happy 9th Birthday!

Today was spent in style: all together as a family at home!

William had a great day: "Mom, this is the best day. You and Daddy are doing a great job!" Thanks. He loved talking to friends and family on the phone and hanging out in his pjs all day. Wait, he hangs out in his pjs almost every day.

I love you because you are patient, brave, tender, smart, thoughtful, optimistic, loving, happy, and funny. We are so grateful you are part of our family! Happy Birthday, our sweet William!

Friday, November 5, 2010

Do We Want a Lead-Lined Room?

I try not to slip and call our hospital room "home", but sometimes it happens. Since September 28th, we've been in the hospital 26 days. But who's counting?

William has been fever-free since we were admitted and his blood cultures are still negative for any bacteria growth. This is good since these are both criteria for discharge. However, his ANC is crashing and is probably at 0 as I type (no active immune system). Typically, this means we can't go home until his numbers rise above 500. Last cycle, it took 6 days for his ANC to start recovering. I don't want to stay 6 more days!!! Fortunately, the doctor is willing to put William into a small group of exceptions due to his comfort with our care at home (and probably due to my constant probing of the possibility and expressed desire to be home for William's birthday.) So, with fingers still crossed and hope alive, William will be discharged in the morning.

Other noteworthy news:
Dr. Lee, one of our oncologists, informed us that UCSF has a neuroblastoma research team that is interested in William, or more specifically, his case as a high-risk, neuroblastoma cancer patient who needs additional treatment after the standard protocol. They use MIBG, a radioisotope, in therapeutic doses to fight the neuroblastoma cells. Basically, they administer very high doses of this highly radioactive substance and it helps fight stubborn cancer cells. As a result, he is put in an isolated, lead-lined room to minimize contact/contamination with medical staff, parents, and other patients. During the first 24 hours, parents are allowed 30-45 minutes of direct contact with their child. The visitation time increases each day as the radioactivity decreases. Is this what it takes to get a private room?

UCSF is reviewing William's medical file to decide whether or not he is a good candidate for the treatment. It was first administered in 1999, but is still considered experimental due to a relatively small number of children with high-risk neuroblastoma. We will meet with them in the next two weeks to discuss the details and then Ryan and I will have the final say if we will have William participate. Dr. Lee thinks William should participate if he qualifies. It's very sobering to think that although William has come so far and done reasonably well, he still in a steep uphill battle.

Everyone says we are handling things well. Perhaps we are and frankly, I don't want to consider the alternative. (Then I'd be popping a very different little white pill!) Sometimes I would like to burst into tears and convince them otherwise. I know we won't be given more than we can handle, but what do I need to do to show that we're there?

Wednesday, November 3, 2010

Just in Time?

I made an apple pie for William today. I promised it to him over two months ago when I didn't finish reading Harry Potter #2 by a certain date. (All sorts of bets are made around here to encourage the consumption of calories). I figured I'd make it today since the apples I bought still remained hidden in the refrigerator and William's appetite is awesome right now.

It's a bit after 11 PM and we just took his fever because he felt warm and we had to get him up to give him a shot. We spent 20 minutes taking it various way, and multiple times in case there was some thermometer error. Nope. He has a fever. We're heading back to the hospital right now. At least we made it just over 24 hours at home.

Tuesday, November 2, 2010

Strength and Gratitude in Hard Days

Thank you for the kind, and supportive response to my venting. On hard days I often think of my ancestors. Strength comes from the record of their really hard days, not the easy days. I want to have the faith and perseverance they had. The saying comes to mind, "I never said it would be easy, I only said it would be worth it." It is and will be worth it and some days I feel it's more worth it than others.

William came home today and we are thankful. We'll sleep in our own beds, eat non-hospital food, shower, wear clothes we didn't wear yesterday, listen to sibling squabbles and we are thankful. Did I mention Cameron threw up today and my washing machine broke?

Still thankful.