Tuesday, December 20, 2011

This past week contained quite the roller coaster of emotions. We are truly touched and humbled by the continuous outpouring of thoughtfulness, kindness, service, well-wishes, concern, love, and support. Thank you! Thank you! We know we may never have the opportunity to personally thank some of you, but know that you have impacted our family for good and it is so appreciated.

During a conversation this past week about ongoing treatment planning, it became evident that I obviously didn't know about recent findings from the post surgery CT scan done earlier this month for radiation mapping purposes. The scan revealed possible new tumor growth in his chest and right abdomen. It is not completely evident if it is really new growth or just something they didn't see before. It came as quite the shock because the doctors forgot to tell us about it. We never thought to follow up on the scan because we weren't expecting any information from it. It was supposed to be just for mapping. I suppose we could have been angry at such an oversight, but we are grateful for the happy week we had without added stress and anxiety. Knowing or not knowing didn't change any action, it just made the time less stressful. At this point, treatment isn't being changed. The follow-up scans that occur after every 2 chemo cycles will be done the first week of January. At that point, more information will hopefully be on the table and further decisions can be made.

Round 4 of chemo started Monday. It should be fairly uneventful. Hopefully. He started radiation on his abdomen Monday morning and he will be transported by ambulance each day for radiation while in the hospital. Nothing like mixing it up. Now we'll see if I can do something about the 8am radiation appointment time since it necessitates a 7:20 am transport pick up. Ugh. William should return home on the 24th, just in time to celebrate Christmas Eve as a family. We are so grateful Ryan's mom could come entertain the boys this week, especially since they are all out of school.

The hospital and holidays are never sometimes a nice combination. When William got off the elevator onto the floor for admittance, the hallway and playroom were full of police officers, a Santa, and carts full of boxes with presents for children. William scored a cool remote control car that is keeping him up and out of bed, racing it up and down the hallways.

Today an older brother of one of the patients brought 30 giant teddy bears and lots of smaller ones for all the pediatric patients. William scored a giant one. I'm not sure how I feel about it since I can't think of where we'll put it, but I know the boys will all be excited. And sweet William said, "I know we really don't need it, but my brothers will all love sharing it." 

Monday, December 12, 2011

Inspiration or Desperation

I often wonder if various life events are a result of inspiration or desperation. A last minute weekday pizza dinner is a perfect example of desperation, but I could argue the whole concept of "Take-n-Bake" or "Hot-n-Ready" being pure genius and inspiration. But we all know it's all about lack of planning, hungry children, and worn out parents. Choosing to sell our first little starter home and buy a larger home while the market was sinking proved to be inspired because I don't know where all our frequent house guests would have slept or what their poor quality of accommodations would have been during this tumultuous past 18 months. I have a strong belief that more often than not, inspiration plays a role in even the small things.

A couple months ago, as we were faced with the reality of the cancer returning, Ryan and I sat down and discussed how we were going to cope as a family all over again. What would we do the same? We would continue to maintain routines and a sense of normalcy with all our children whenever possible. We would continue to be hopeful and faithful and optimistic and strong. We would look for opportunities to increase family bonds. What would we do differently? We would simplify our lives even more. We would improve William's quality of life as much as possible, even if it meant taking some risks that we weren't willing to take the first time (i.e. attend school). Soccer season was in full force as we were contemplating simplifying. We decided we would take a break from all organized sports so we could have dinner together each night and have weekends free for family fun. We have enough boys to create our own teams anyhow! We want to make each day count.

William made it home last Tuesday after 21 days in the hospital. Wow, it felt so good to all sleep under the same roof that night. Wednesday morning, William and I got up bright and early and headed back downtown for his radiation appointment on his ankle. (His last ankle radiation is tomorrow morning). Then we headed home, packed our bags, gathered our snow gear, checked the kids out of school early, and headed up to Tahoe for a quick overnight getaway. (We had to be home Thursday afternoon for his next radiation appointment). It was wonderful...too short, but wonderful. A huge thank you to my aunt and uncle for such a gift! We all enjoyed some pool and hot tub time before dinner---emphasis on hot tub. Even William managed to make it work. Dinner was a family favorite: Fondue! It's all about the weapon-like utensils. A movie, popcorn, hot chocolate, and all snuggled up together on the bed was a perfect, relaxing evening after a long month of stress and separation. Thursday morning we had a big breakfast (trying to pack calories on William's little body), donned our snow gear, packed up the car, and headed to the Heavenly Gondola to have an adventure and enjoy a spectacular view. Ryan and I had second thoughts when we saw the price and calculated the cost for our entire family. After a few gasps and gags, we knew we had to do it because it is what we promised the boys and what we wanted to do as a family. $170 for tickets and another $30 for hot chocolate, hearing the boys squeal with excitement and tell us it was the best vacation ever--even better than Disneyland (I think they got a little carried away) made it priceless. The views were spectacular and the snow wheelchair was sweet. The man-made snow was disappointing for snowball and snowman making, but Ryan managed to find some deep snow for the boys to feel adventurous. We left and headed straight back to the hospital in Sacramento for William's radiation appointment and made it with not a minute to spare.

We were desperate for some happy, family time. Inspiration saw our need for a break and convinced us that we could take off mid-week, spur-of-the-moment, and just find peace and love with one another. (notice I didn't say quiet!)

Saturday, December 3, 2011

Records and Riding in Ambulances with a Boy

Not including the 26-day stint in S.F. for transplant, William has set a personal record of consecutive days in the hospital: 18 and counting. And it's getting a little old. Okay, big old!

The PICU kicked him out on Monday. That's a good kind of eviction. The floor and his regular nurses anxiously awaited his return. Floor is hospital lingo for the regular rooms. His favorite night nurse even had dibs on him as soon as he got out. Since then it's been a bit of a holding pattern all week, waiting for the green light from the surgeon and oncologists to start chemo---the main issue being the periodic spiking of low grade fevers. Thankfully, blood cultures remain negative. Then his left ankle took a turn for the worse after a heroic late night walk around the floor on Monday night to show off his rapid recovery. The following day he was in so much pain he wouldn't let anyone touch it. The physical therapist put him on non-weight bearing status until further investigation. An x-ray on Wednesday revealed his ankle tumor getting bigger. The surgeon and oncologists agreed the fevers were likely due to the effusion and junk still in both lungs. Something that only time and increased activity will truly remedy. So the combination of the increased tumor growth and determined fever source, chemo began Thursday night. We cheered! Who cheers for chemo? We do. Because that means we can actually estimate the remaining days in the hospital. Five days of chemo will hopefully earn us a get out of jail hospital card for free. (We won't talk about how much a 3 week stay which included major surgery, 11 days in the PICU, chemotherapy... really costs!)

Other very noteworthy news: William took an ambulance ride! It was his first and what a nice change of pace that was. Sound crazy? Let me explain. In an effort to aggressively go after his tumors, William will be undergoing radiation and chemotherapy at the same time. The radiology oncology center is at the new hospital. We are stuck at the old hospital (there are other adjectives I could use for physical condition of this hospital). This necessitates an ambulance transport each day for radiation. Radiation will be on his left ankle for now in order to let his abdomen heal a little more. The next round of chemo will include the abdomen radiation. On Friday, William had his simulation appointment where they do all the measurements, radiation calculations, foot positioning mold, and tattoos. Yes, although last time was unpleasant, I let him get four more tattoos. But I'm holding to my word that he's only allowed to get dots!

William had a great time. Our paramedics and nurse were lots of fun and the paramedics even turned on the lights and siren for him.

William is doing a great job with his physical therapy. He's is a wonder with a walker! And if you saw his biceps, you'd be impressed he even has strength to hold himself up! The kid is skinny, skinny!

Tuesday is our anticipated freedom day. If all things go as planned, we'll be able to leave the hospital and go straight to radiation and then home. (And should also make it home in time to do school pick ups!) I even scheduled his radiation appointment time on Wednesday to be first thing in the morning and Thursday's appointment to be the last of the day so we can sneak our family up to Tahoe for 2 days and a night. If I could, I'd even schedule a fresh snowfall up there for some sledding, but I won't push our luck. We are all so very, very anxious to just be together as a family and enjoy some peace and quiet.

So if we must set records, we hope we can find some things to celebrate. I think heading home is reason enough to always celebrate. May the next few days go exactly as anticipated...fingers crossed with a sarcastic grin, and hopeful heart.