Sunday, March 27, 2011

I Love You, Grandpa

I love this time of year. I love spring. Although if you live where we live, you might wonder when the winter weather would pack up and leave. I really shouldn't complain because I don't have to shovel anything. I'm just a California wimp and proud of it! But I also love this time of year because of General Conference. Each year, during the first weekend of April and October, members worldwide of The Church of Jesus Christ of Latter-day Saints gather to listen to the prophet and other leaders of the church give instruction during 5 tw0-hour sessions over the course of Saturday and Sunday. It is broadcast worldwide via satellite, television, radio, and internet. It is awesome and uplifting and the counsel and instruction is so relevant to today. So next weekend I'll be listening to some Mormon Tabernacle Choir and good words. Oh, and eating cheese souffle and cinnamon rolls because that's the family tradition.

One day I hope to publish this blog for my children. This is my journal. I hope they find comfort, strength, love, peace, humor, understanding, courage, but most of all, faith and testimony. I want my children to know of my love of God, our Heavenly Father and His son, Jesus Christ. I want them to know of my faith in their reality and their love for me and each of them individually. I hope they see the miracles and tender mercies we have received. I want them to know that I know we are here on earth as a family for a purpose as part of God's eternal plan. I believe trials are evidence that the Lord feels we are prepared to grow more. And I hope we are growing well. "[Heavenly Father] and His Beloved Son love us perfectly. They would not require us to experience a moment more of difficulty than is absolutely needed for [our] personal benefit or for that of those [we] love." This quote if from one of my favorite talks on trials and adversity, Trust in the Lord, given by Elder Richard G. Scott, in the October 1995 General Conference. He instructs,
"When you face adversity, you can be led to ask many questions. Some serve a useful purpose; others do not. To ask, Why does this have to happen to me? Why do I have to suffer this, now? What have I done to cause this? will lead you into blind alleys. It really does no good to ask questions that reflect opposition to the will of God. Rather ask, What am I to do? What am I to learn from this experience? What am I to change? Whom am I to help? How can I remember my many blessings in times of trial? Willing sacrifice of deeply held personal desires in favor of the will of God is very hard to do. Yet, when you pray with real conviction, “Please let me know Thy will” and “May Thy will be done,” you are in the strongest position to receive the maximum help from your loving Father....To recognize the hand of the Lord in your life and to accept His will without complaint is a beginning. That decision does not immediately eliminate the struggles that will come for your growth. But I witness that it is the best way there is for you to find strength and understanding. It will free you from the dead ends of your own reasoning. It will allow your life to become a productive, meaningful experience, when otherwise you may not know how to go on."
One of the great examples to me of adversity without complaint and remarkable strength and faith is my Grandpa, H. Smith Shumway. He peacefully passed away on Saturday afternoon at the age of 89. He was amazing and I can only imagine the joyful reunion in heaven as he was reunited with his wife and daughter and many other loved ones. Grandpa landed on Omaha beach in Normandy, France during WW II on D-Day in 1944. He was blinded by a tank explosion nearly 6 weeks later when he was 23. After the war, he returned home and married his sweetheart and raised 8 children. He found the blessings in his trials and made weaknesses his strengths. He was amazingly independent and the story of his proposal to my grandmother is often retold, "If you will sort my socks and read my mail, I'll do all the rest." And he did. Well, she drove the car too! I am grateful for his optimism and faith in the gospel of Jesus Christ. And I also think it's cool that he let me hold his eyeballs when I was young. I love you, Grandpa!

William and Great-grandpa Shumway in Nov. 2009, 6 months before William's diagnosis

All the boys with Great-grandpa Shumway in July 2009

In Normandy, France at Omaha Beach in June 2004 for the 60th Anniversary of D-Day

Thursday, March 24, 2011

Remission Correction

Today's weekly oncology clinic visit went well. Except for the fact that I was so focused on getting copies of all the printed test and scan results, scanning them for anything I might want to talk about, I forgot to ask about the big R---remission. I called back and asked the receptionist (she's new, bless her clueless heart) to relay the question to the doctor. The relayed response was... No, he is not quite considered in remission even though the bone marrow is negative. And then she said something about labs being done. I'm assuming she meant more labs need to be done to determine that because I am hoping that if current lab results indicated something I should know, I would have been told. But that is often an enormous assumption.

With all that out in the open, we are still thrilled with a negative biopsy result, regardless of the terminology used to describe William's current state. We are grateful for the outpouring of shared sentiments of joy and gratitude. I was asked how long I cried after hearing the news. I didn't. I still haven't. Nothing about our daily lives changes. We still go to the oncology clinic once a week, draw labs twice a week, head to the hospital for radiation every day, administer several medications 2-3 times a day, juggle who cares for the rest of the boys, and anticipate the unexpected at any time. Perhaps I'm becoming emotionally callous with all the roller coasters we've been on. Our guards are still up a bit as he still has months of treatment to endure. But yes, we are breathing deep sighs of relief at this point. It is wonderful and miraculous and exciting and relieving. It is progress.

Radiation continues to go well and the routine has settled into a standard 20 minute appointment each day (plus the 1 hour commute time). William is a trooper and loves getting in and out so quickly, but he did get sad the other day when I mentioned he'd have to do some schoolwork when we got home from the hospital.
William: Why can't I just have ONE day without hospitals, doctors, or homework. I just want to sit and relax in quiet at home?
Me: That happens on Saturdays and Sundays.
William: No it doesn't. My brothers are home and they are always loud and crazy.

Here's a brief clip of the set up for radiation. He lays with his legs in a customized mold to make sure he is positioned correctly each time. The green lasers are used with the tattoos on his abdomen to line everything up just right. They also made some additional marks on his torso, but they will wash off after treatment is complete. The video shows William getting the quick CT scan right before radiation begins each day. I can't be in the room for the actual radiation zap, but this will have to suffice to give you all a visual. The cancer center is brand new and the equipment looks so beautiful and new and high tech and clean. What more could I ask for?

Tuesday, March 22, 2011

The Unexpected and a Celebration

I'm off my game. The break from hospital life has been good, almost too good. Radiation treatments began Monday and all went well. It was a little long since extra scans and measurements were taken and William's bone marrow biopsy sites are a bit sore from laying on a hard surface, but it was all good. That is until we began driving home. I got an unexpected reminder that I was unprepared. As soon as we started to get on the freeway, Soren, 4, informed me that William was throwing up. Poor kid. He's such a pro at it that he didn't even tell me he felt sick, hoping he could just get it under control by himself, and then proceeded to vomit in near silence. We stopped and I got him cleaned up and the mess cleaned up too. Thankfully, I still keep plenty of Clorox wipes and baby wipes stocked and handy. I found a grocery bag for him and we set off for home again. Unfortunately, he had to continue using it for the duration of the 30 minute drive home. Once home, Zofran worked its magic. Thank you, my friend, Zofran.

The nausea was likely caused by the fact that the left side of his abdomen is the primary radiation site and home to his stomach. Today I pre-medicated with Zofran and all went well. The doctor assured me that the pre-meds should be sufficient to manage the nausea. I'm getting a new prescription anyway, just to be sure I have an ample supply for the future.

Also, while meeting with the doctor today she mentioned having received the bone marrow biopsy results YESTERDAY! I love how notifying the anxious parents is an oversight.
Me: "No, I haven't heard. I was hoping to make a call this afternoon."
Dr.: "Yes, they're negative."
Me: "Really? It's negative? It's negative! This is our first negative biopsy."

Tonight we celebrated! We celebrated in William style: In 'N Out and homemade chocolate chip cookies. I threw in some helium balloons and we all shouted hoorays around the dinner table for William's bone marrow and then for each of the boys being so great through everything.

Although we haven't heard the term used officially, I believe this is when we can finally say he is in REMISSION. He is in remission. It feels so good to say and believe. We are celebrating and continuing on to make sure Doohickey doesn't come back!

Sunday, March 20, 2011

Long Week Makes Long Post

But at least the week is over!

Thursday began with a clinic visit and a happy reunion with one of his best hospital friends, Spencer. It was fun to catch up with Spencer and his mom---so much so that I completely disregarded, well not completely, his isolation precautions and let William go mask-less while hanging out with his friend. Spencer was getting admitted for his last chemo! Hooray!!! He'll be done with treatment as his road map doesn't include radiation or any other therapies. Awesome! We're jealous, but so thrilled for him and his family. It is strange to have friends go through this process and actually reach the finish line. It is crazy to realize how intense the past 9 months have been and suddenly there is this light at the end of the tunnel and we're running faster toward it. William's ANC reached 2400 which gives the green light to proceed with radiation on Monday.

Thursday also included another bone marrow biopsy and aspirate. I would roughly guess that it was his 10th or 11th time getting one of these. William looks great and even had a few nurses come in and oooh and ahhh over how amazing he looks for not even being to his 100 day mark post transplant. The biopsy was uneventful with the usual delays and such and per William's usual request, the anesthesia part was video tapped. We are anxiously awaiting the results on Monday or Tuesday and hoping to receive "negative" results for the first time---negative for cancer cells. I haven't even bothered to ask what we do if results are positive. We'll address it if it becomes our reality.

Thursday couldn't end soon enough though. Not long after returning from the hospital with William, while picking up the boys at a friend's home, Soren managed to tuck his toes under the end of a treadmill just in time for his brothers to turn it on. It was gory enough to necessitate a trip to Urgent Care. Of course Ryan's plane from Portland was delayed 2 hours so I had to make another last minute call to a wonderful friend (I have the best) to come watch the boys while I headed off to see another doctor with another boy. The doctor assured me my visit was "appropriate". It's probably a job requirement to make the ridiculous co-pay feel justified. Soren suffered 2nd degree burns on both big toes and was terrified of the possibility of getting a shot.

Soren: Am I getting a shot?
Dr.: No. I promise you aren't getting any shots.
Soren: Do you give shots here?
Dr.: Yes, sometimes, but you don't need one.
Soren: Where are the shots? Are they in here?
Dr.: No. We keep them in another room.
Soren: Are there any in the cupboard or drawers?
Me: No, Soren. There are no shots in this room at all.
Soren: Oh.

He relaxed and became quite enthralled with the details of his burn dressing. He insists his "supplies" are put in a special place by William's medical supplies. He loves to remind me when he is due for Motrin, told me he thought he needed a blood transfusion (he has no idea what one is but knows William gets them), and likes to wear a mask when I do his dressing change because William wears them for his Broviac dressing change. It's cute and hilarious. Here's a lovely photo. Warning: it ain't pretty.

The Donut Dash was a success. Success is measured by the amount of people that show up and/or donate to the cause and by the lack of rain. The rain started back up 15 minutes after the last racer crossed the finish line. Amy and Ryan did great and Ryan brought one of his four donuts home for the boys. He was sick after eating 3. Here's the start of the race for your viewing pleasure. Take a look at the 2:06 time marker at the guy who runs up to the camera in a white T-shirt with a black long sleeve underneath and a beanie. But don't stop watching, the camera turns and the fame chaser turns around and looks back! I just love him!

William's name is near the bottom on the left under the "In Honor of" section. Thanks Amy (and all your generous friends), for raising so much money in his honor!

We plan on making this an annual family affair and continue to give back to an amazing program that gives so much.

With the week finally behind us, we move on---on to Radiation.


Happy 1st Birthday, Sweet Eliza!

Sunday, March 13, 2011

Donut Dash III

On Saturday, March 19th, 2011, Ryan will be running with a good friend from our college days, Amy, in the annual Donut Dash. The race benefits the Child Life Program at Sutter Children's Center in Sacramento. It is a 4 mile race through the beautiful, shady neighborhood of Land Park. The race is a 2 mile run, jog, or walk to Marie's Donuts, eat 4 donuts (or 6 donut holes) and then 2 miles back. You can find all the details at Oh, and you can just donate to the program too if you don't want to run or eat donuts! But where's the fun in that?

We LOVE the Child Life Program and owe an enormous amount of happiness to them. It is the Child Life program that has provided many toys, blankets, art projects, movies, music, Wii tournaments, and various incentives to help motivate William through some crummy days. They've also been an incredible support system to me and Ryan as we also had some crummy days. We adore our Child Life friends and will always be grateful for the special roles they've played in our lives. Millie, the dog, is a part of the Child Life Program too. It is truly remarkable to witness the joy and sense of calm she brings to William and the other children.

I'll be cheering from the sidelines with the rest of the boys (William can't be in crowds so he'll likely be absent). Amy's been training on the treadmill. Ryan just started his training yesterday by bringing home donuts for breakfast! Go TEAM!

Wednesday, March 9, 2011

Teaching Moment

As a parent, we look for teaching moments. Some are more welcome and comfortable than others. Sometimes we're well prepared and other times we're caught completely off guard and grasp for any sensible or ridiculous facts. I was prepared for Monday's teaching moment, but a year ago, didn't think the practical application would come for at least 10 more years or ever, for that matter. Monday's lesson: Tattoos.

William finished off his meeting with the radiology oncologist with three tattoos. One dot each. He winced and complained and was not a fan. It was awesome!!! I wish my phone battery hadn't died so I could have video taped it for posterity and to remind him in later years how unpleasant he thought it was. We had a lovely conversation discussing the hundreds of needle pokes and likely pain an artistic tattoo requires. He was not impressed. I'm crossing my fingers that it sticks for life. The lesson, not the tattoos.

right side (freckle?) It's the one in the middle.

left side

The tattoos are simply markers for the radiation machine to insure the proper areas are radiated. They are what they are and we move on. Radiation will begin on the 21st and he'll endure 12 cycles. (1 cycle/day M-F). It is a fairly low dose so the side effects should be mild, the most likely being fatigue. He's already always tired so that doesn't change anything.

This week and next week he is getting the long list of tests and scans to assess his progress after the consolidation phase (transplant). I received the call Tuesday afternoon informing me of the times William needs to be at the hospital on Wednesday and Thursday. I scrambled to cover childcare bases and when we arrived at the hospital this morning for a CT, audiogram, and bone scan, I was informed that they had no record in the system for the CT and bone scan. By the way, William was fasting for this and he's not supposed to be in public places with lots of people. I was so frustrated, but tried to remain pleasant since the people I was probably allowed to talked to were not the culprits! After several phone calls and spending over an hour dealing with the mess, we were rescheduled for Friday for the CT and bone scan. What a headache. I'm really not going to miss this lifestyle. Really! Really!

Here's the upcoming schedule:
  • Thursday: GFR (kidney function), clinic visit, 2 blood draws, EKG, and Echocardiogram.
  • Friday:CT and bone scan.
  • Monday: bone marrow biopsy (still waiting for confirmation).
  • Wednesday: IVIG infusion in SF.
  • Thursday: MIBG injection.
  • Friday: MIBG scan.
  • Whew.
  • Monday: daily radiation begins.

Sunday, March 6, 2011

To my friend...

I think about blogging every day. I have plenty to blog about. I'm just so tired every night.

Here's how William spent Saturday afternoon (after a couple hours of Wii).

Being with James makes him feel normal and forget about things that have changed. While I was discussing our family with a nearby mom, William chimed in, pointing to James, "Some people think we're brothers, because we look alike, but we're not." I love that he doesn't realize that James has grown a foot, gained 30 lbs., and has enough hair for the both of them.

Cancer update:
  • Monday morning we meet with the radiation oncologist to be presented with his radiation plan. Assuming we accept it (duh), we'll get the tour of the machine and initial measurements will be taken for his positioning, etc.
  • CT, bone scan, MIBG scan, and bone marrow biopsy to be scheduled soon. Hopefully this week, but I have yet to be notified of appointment times. Yes! I love living like this.
  • I continue to draw his blood at home for labs and Ryan drops them off at the hospital. This eliminates unnecessary exposure to harmful germs at the clinic.
  • Still waiting for the ANC >1000 to start radiation. The ideal window to begin radiation is by March 14th.
So, my friend, you can stop the calls and texts with idle threats and complaints of having to look at "Derby Days" another day. But don't stop calling and texting because you make me laugh. I'll text you now to let you know this post is up!