Recharging

Recharging and it's all good:

• The moratorium on close contact with William is over.
• His blood counts continue to be high enough to allow him some freedom to be a boy!
• Spent 1 day in S.F. for a stem cell rescue (a simple transfusion) of one of the three batches of his own stem cells that were harvested back in August for his upcoming transplant. The purpose was to give him a simple boost before transplant since the MIBG radiation therapy can be quite taxing on his stem cells and their ability to produce the needed blood products to keep him healthy.
• Enjoying every minute of not being in the hospital or living under the threat of admittance for a while.
• Scheduled to be admitted at UCSF for stem cell transplant on January 24th.

We are filled with deep gratitude for how blessed we are. We are so grateful William is doing so well right now and how well he has tolerated so many hard things. He still has a long road of treatment ahead of him, but we are thankful for today. We are immensely thankful for an incredible support unit. I don't know where we would be without our family support. Our parents and siblings have swooped in to lighten our burdens on so many occasions and often at very short notice. Our love for our families has always been great, but it has truly intensified as we have seen and felt their love. We have been nurtured and strengthened in many instances when we could not do so for ourselves. We also have amazing friends and neighbors and live in a community that has shown us many thoughtful and often secret acts of kindness that can only be paid forward by serving others in similar ways. Thank you. Thank you.

The past 7 months have been intense and very exhausting. We still have at least another 7 ahead of us with treatments that will included many scheduled hospital stays and countless tests, etc. I can't help but feel that the Lord knows our capacities and knew we needed this small period of time to breathe, regroup as a family, and recharge for the battery draining that will soon recommence.

Thank you Santa

Dear Santa,
Thank you for making my lunch with my friend happen.  I had a wonderful time.  I don't think we ever mentioned our children- how is that possible?  We finished our lunches without being interrupted.  It was a first.  A first of many- yes?
Still believing,
Lisa

And a note to the curious, caring, and faithful readers- the season is the reason for no blog posts.  Julie has been busy visiting her wonderful family in the Bay Area (with a little trip to UCSF for a booster shot of sorts) and playing at the snow with her children, and being a mom at Christmas time.  The whole family + Uncle Matt stopped by our house yesterday and everyone looked great.  And Will talked our ear off.

Home. Sweet, Loud, Chaotic, Home!

Late Tuesday night, we pulled into our driveway and sighed deeply. I love home. I love ceilings that don't have creaky pipes, beds that are soft with high thread count sheets, walls and doors that provide privacy, and bathrooms and showers that are NOT communal. Oh, how good it felt to shower in our own shower!

We are exhausted and we feel like we're back in the infant stage. William needs potassium iodide every 4 hours to protect his thyroid from the radiation. This will continue for the next month. We set our alarms and sleep lightly. I wake frequently wondering if I've missed the alarm or if it's time for the next dose. But it's all worth it. Right?

William had an MIBG scan on Tuesday afternoon before we headed home. The purpose was to see the uptake of the MIBG in the neuroblastoma cells. There was the possibility that new locations of cancer cells could be evident since a much higher dose of MIBG was administered. We waited anxiously on Wednesday for the results. We are pleased to announce that no new sites were found and the spot on his pelvis appears to be gone. However, there are still active cells in his liver and a small amount near the resection site along his spine with the continued likelihood of an involved lymph node. Our realistic hope is that the MIBG will destroy all cells, revealing no evidence of disease (a good remission) in his future scans scheduled in January, just before his stem cell transplant.

Otherwise, William is feeling good and trying to remember to sit away from his brothers for another week. It is hard to remember sometimes that he needs to stay away because he feels reasonably well. Please don't get nervous being around him; the precautions are only in place for extended exposure to him. You could hang out next to him for 8 hours and get less radiation from him than you would on an airplane from the atmosphere. It's all a little crazy and my head still spins a bit from the crash course on radiation. Talk to Ryan if you want a more scientific, detailed explanation.

Did I mention how good it feels to be home?

Trying to Get Home

Here's our Family House room. It just a room, no bathroom, sink, TV, but it's clean and place to crash and briefly escape from the confines of the hospital.

Sunday night when I returned to the Family House to sleep, this was posted on a guest door down the hall from us: (click on photo to read more clearly)

This morning I frantically began packing up and cleaning our room and washing our bedding and towels. But it wasn't due to the illegal drug activity. Oh my! This morning's radiation reading from the safety team was 2.8: good enough to be told we could go home after an official reading from the Radiation Safety Team later in the afternoon, the arm banding, and the MIBG scan. William has to wear a special bracelet for a month to notify any hospital in the event of an emergency that he has received this treatment since most healthcare facilities have never heard of it. The scan will reveal all the places the MIBG was taken up by the neuroblastoma cells. He'll have a follow up scan in 5 weeks, just before transplant, to see how effective the treatment was.

We rarely get too optimistic when things seem to go unexpectedly in our favor, but we never stop hoping for the best. Does that say anything about our exhausting journey? The nurse assured us we would be discharged, the final say from radiation safety was a YES, and the Nuclear Med Dept. rained on our parade out the door. They were backed up and wouldn't fit us in today. They can't schedule the scan until tomorrow (Tuesday) at 4 PM. I guess that's a price we pay for staying at a large hospital facility: they keep busy. However, we did take our discharge papers and ran for the . . . family house. (No funny pot smell today. Just a strong smell of cleaners and disinfectants.)

Pot or no pot, we weren't staying put after 6 cooped up days. We dropped our bags and headed out to find non-hospital food and fresh air. We walked around Giradelli Square and sipped hot chocolate; meandered through Fisherman's Wharf, buying and eating a fresh, whole cracked crab, (stopping at McDonald's for William); and roamed Union Square by foot, gazing at the beautiful Christmas lights.

Tomorrow we hope to continue the touristy thing in the morning before we have to report back to the hospital. William deserves a fun day before the world of doctors and hospitals swallow him up again.

Once we get home, William will need to remain at least a meter away from anyone for extended periods of time for 10 more days. He'll have several trips to the clinic to monitor blood counts and then we're back here next Friday for a stem cell infusion to boost his bone marrow in preparation for transplant on January 24th.

But for now, we'll just focus on getting home.

Dear Santa,

For Christmas this year. could I please have two hours to take my dear friends to lunch?  If you could arrange for a wonderful uncle to arrive and wrangle five boys and allow us that time together, it would make this holiday very special.  It may seem like two hours is a long time for lunch, but my friend Julie and I can't hardly finish one story together in an hour each day.  We talk often, but I miss seeing her smiling face.  I miss seeing her sad, silly, and especially frustrated faces too.  We do enjoy one another's struggles together.  I can't wait for her to get back home.

I haven't been more naughty than usual this year so I am really hoping I am still on your list.  And my friend has been as wonderful and nice as usual and she should enjoy a wonderful lunch at my favorite place.

Please give my best to to Mrs. Claus and the elves and reindeer.  I know it is a busy time of year for you all, I appreciate you taking the time to read my letter.

Still believing,
Lisa

Welcome Back William

Today was a good turning point for William. His radiation reading late this morning was 6 (units are in millirems per hr for all you engineers out there), which was low enough for his catheter to come out (he was at 55 mR/hr on Wed, and needs to be at 2 before going home). William was not as thrilled with the prospect of catheter removal as Mom and Dad were. Will has been a huge trooper for the last 6 months in countless ways, but he draws the line at anything having to do with inserting or removing tubes. I can't blame him. We tried to talk him through it, but in the end the brute force method of holding him down was employed, he screamed (more because of being held down against his will than from any pain), and the nurse and I were swiftly asked to leave the room and leave him alone.

But within an hour he was back to his chatty self that had been missing in action for several days since the infusion, and he was talking our ears off and mentioned to the nurse that he had been grumpy earlier, but felt much better. It is wonderful to have our good-old William back. He's gotten out of bed a few times (he's not allowed to go farther than the bathroom) and he has been doing more activities and eating a bit more. Hopefully he'll also be able to catch up on a few texts (I think Julie mentioned earlier that he has a cell phone while here in the hospital) that he hasn't felt up to responding to in the past few days.

Julie and I actually even got a quick walk in this evening - much needed, even though it was just between a distant parking spot and the Family House where Julie is staying tonight. We hope that William's radiation levels continue to drop and we can spend much more time outside of our hospital hallway home in the coming week. Things are going well and we're grateful to be here and have William's energy back up a bit to keep us entertained.

Grandma and Grandpa Murdock continue to keep the home fires burning at an impressive pace and I think the boys are having so much fun they may not want me and Julie back. We love and miss you boys (and all the rest of you too). Goodnight from your radioactive friends.

We Were Warned...

...the biggest side effect is extreme boredom.

Ryan and I continue to reside at the end of a hallway behind double glass doors. We are in a fish bowl. The total space is approximately 8 tiles x 10 tiles (ceiling or floor depending on which one you feel like counting). Yes, I've counted. The old pipes in the ceiling creak constantly and make quite a racket at night. We have earplugs for that. We hear the ambulance sirens through the Emergency Exit door that our sleep chair actually overlaps and we have to move out of the way for other patients/parents to access the shower. We try to keep the perspective that this is all temporary.

The door on the right is another patient room and the door next to Ryan is the shower and the door on the left is William's.

William is passing his days watching cartoons and The History Channel. His energy and appetite have decreased which are normal side effects of this therapy. But darn it, we're still trying to pack on the pounds. Although he has told us on several occasions he doesn't want to talk (his tell-tale sign he's not feeling good), he remains quite pleasant. It constantly amazes us how patient and accepting he is of all he's gone through. He even confided in Aunt Paige that going through all this was almost worth it to get his own room! Really? A little more begging may have worked over getting cancer.

Visits from Uncle Rich and Aunt Paige, Grandma and Grandpa Murdock, and all his brothers have brought a welcome change of pace to the days. Although I must admit that I am a little jealous of the prolonged visits they had with William in his room. Unlike me and Ryan, they don't have to pace their daily allotment of exposure to him.

The boys were a little bummed they couldn't go into the room, but if you look closely in the photo, you can see William in the reflection in the mirror. They quickly got over their disappointment by raiding our snack bag of sour candies and goldfish crackers. At the moment, Ryan and his parents have left the hospital and are enjoying the afternoon at the California Academy of Sciences which boasts an aquarium, planetarium, rainforest, natural history museum, and more. Hopefully tonight we'll all sneak out to dinner together if William is okay being left alone for a bit. (He may not even notice while in a TV coma!)

So although the days may be long, the accommodations tight, and the boredom hard to fight, this too shall pass.

Hot Stuff

It is done. He has received his I-131-MIBG treatment and now we wait for the radiation to wear off.

It's been a day of brain overload trying to assimilate a crash course in nuclear medicine and radiation safety. So enjoy the slide show because I'm too tired to come up with any additional commentary. However, I must add, for pure recollection purposes, the Bingo game.

The pediatric patients get to play Bingo every Thursday afternoon. Some group or person from the community hosts it each week. This week was the San Francisco Fire Dept. It is broadcast over closed circuit television so all the kids that can't make it to the playroom can participate. Everyone gets a prize and the prizes are fantastic. The playroom looks like a toy store. William was so excited. However, the game started at about the same time his infusion was starting. William's room was buzzing with activity. William can tune out anything and was completely focused on the Bingo game. The nurse was monitoring his vitals closely and all of the sudden his heart rate jumped from 113 to 138 and William shouted, "Bingo! Bingo! Bingo!" And fumbled for the telephone receiver to call in his Bingo. It was hilarious and gave us all a good laugh.

Back to the slide show:

Practice Run and a Video Tour

Today was filled with trying to cram in whatever we could before life becomes incredibly restrictive for the next week. The rainy San Francisco morning was spent touring the city by car. We traveled down Lombard Street, drove through Golden Gate Park, went past the Painted Ladies and Alamo Square, surveyed City Hall, and ascended and descended some incredibly steep streets. I'd like to insert that I have a recurring nightmare since adolescence about driving really steep streets and whether going up or down, the car starts to tumble end over end. I was the driver today. Oh fun! Let's just say that the knots in my neck from a crummy hotel bed and steep street tension are wishing I'd packed the last muscle relaxer pill I've been hoarding for a couple years for a special occasion like this!

We also toured the Family House where Ryan and I will be trading off sleeping at nights. Unfortunately we are stuck at the one about 10 blocks from the hospital instead of the one across the street, but we'll take it over staying in our poor choice of a hotel. Then it was finally time to head to the hospital.

We got checked in and started settling into our lead-lined life. William had a Foley placed (catheter for urination). Oh, that was a lovely time. William handles everything like a champ. He is truly a trooper. But when it comes to line placements or removals...bring on the heavy sedation! Child Life brought in an ipad to borrow as a distraction during the procedure. He lit up at the sight of Angry Birds in HD on a big screen. It was hilarious and we almost thought we'd hardly need meds to get through the catheterization. Nope. The doctor planned on 3 mg of Versed and when all was said and done, William was the prize recipient of 5 mg Versed and 65 mcg of Fentanyl. 2 mg of Versed is usually enough for an adult to agree to anything. He was loopy and I'll spare William the public embarrassment of some of the comments he made, but oh, how I wish I had them on tape!

So today was a practice run of how everything will work once radioactivity is a reality. It's all in an effort to eliminate surprises and the need for prolonged entry into the room once William becomes radioactive. The radiation safety gurus will lay down the law tomorrow morning and I'll have some more crazy photos and processes to describe tomorrow. So sit back and enjoy a brief video tour of our world for the next 7 days!

Down By The Bay

We made it to San Francisco. It's been a busy day and full of fun memories. We're exhausted and have a long day ahead so here's a quick recap.

• Ran into our friend Will H. who is 18 and has lymphoma. He is from Folsom too, but gets all his treatments here in San Francisco. It was so great to finally meet his mother as we've only talked on the phone and emailed. I love how small the world feels sometimes. Will finished his last round of chemo today! Hang in there, Will! You've come a long way!
• Met with the doctors and gave our final consent for treatment.
• Toured the lead-lined room. Can't wait to get pictures and possibly video of this one. They've lined the room with plastic for protection, i.e. floors, food tray, mattress, toilet seat. But it is a room with view: Golden Gate Park and the ocean in the distance.
  
• Checked into a hotel for tonight. The reservation was made during a stressful moment, while running late to leave the house, and as a recommendation from the social worker. She said it was the closest to the hospital with a hospital discount since the Family House was full and was adequate depending on your comfort level. That should have been a red flag, but we made our own hasty choice and now we're sleeping in it (but only for 1 night)! To my siblings: this is a close second to the hotel in Lake Como, Italy when we tried to be cheap and wished we hadn't.
• Headed to the Golden Gate Bridge for sunset.
• Went to dinner with my brother, Rich, who works in the city. We went to a fantastic Italian restaurant! You've got to love a place where the waiter tells you his mother makes the lasagna and he recommends anything on the menu with meatballs!
• Took a long walk around the financial district and down to the waterfront.

It was a good day after a lot of the stress and anxieties were settled. I'll let you know tomorrow if Ambien works with the Metro train running all night just outside the window.

And The Winner Is...

MIBG Therapy: The Saga in the Lead Lined Room.

At 3:40 PM we finally got the definitive call that sends us to San Francisco tomorrow morning to spend a week receiving treatment. The bone marrow biopsy result is still not in print, but the verbal, preliminary report shows improvement (decrease of cancer cells in the bone marrow), but still evidence of disease. We don't know how much, but enough that the doctors at UCSF want to proceed with the MIBG Therapy treatment option.

So the outlook is to receive this treatment, return right before Christmas to receive an infusion of one of his three previously harvested stem cell units to give his bone marrow a boost, and a few weeks after that William will undergo stem cell transplant.

This is a good step. This is progress. We are nervous and anxious, but we trust in our medical villages and in a loving Heavenly Father who hears our petitions.

Waiting on One Result

The past week of scans, procedures, and blood products is behind us and now we wait for results. Actually, we have all the results but one. And that ONE is the determining factor in what treatment road we proceed down. So we wait for the call Monday morning to know if Tuesday's trip to San Francisco is a one day party or a week long party. (Transplant meeting to discuss risks and fill out paperwork vs. admittance for the MIBG radiation therapy).

On Thursday, before the bone marrow biopsy and aspirate, the MIBG and CT scan results were in our hot little hands. The doctor's overall summary of their contents was of improvement. But a few things aren't quite that settling to the parent reading the report. The liver metastases (cancer spots) are smaller and there appears to be no evidence of bony metastases. Good. However, there appears to be increased cancer cells near the resection site (where tumor was removed) which could be new disease, but also could be just residual cells, but no one really knows unless a biopsy in done and that is deemed to invasive at the moment. Not so good. We're trying to trust that it's nothing to cause alarm.

We hoped to get a sense of what the biopsy results might tell us from the scans, but we are still completely clueless and anxious. As we anticipated, it comes down to the bone marrow biopsy results to see what is left in his bone marrow because we want it as clean as possible before transplant. And that result must come last! At this point we feel peaceful with either road because both provide increased likelihood of the tumors not recurring.

Ryan and I often discuss the contents of our prayers because we feel like we have so little control over anything at this point. Of course, we pray that William will win this fight, but we know that it is not going to disappear overnight. Where would the fun be in that? A good friend shared in her testimony at church today a reminder that the Lord doesn't take away our challenges, but gives us the strength to get through them. So, although we want to plead with God that this trial will come to an end soon, even more, we want the wisdom to make the right choices and decisions at the proper times. Like King Solomon in 1 Kings 3:5-12, we will pray for an understanding heart.