I know I will get busted for posting this candid picture I took tonight, but it's easier to ask for forgiveness than for permission. Thank you for the birthday wishes, everybody! Thanks for all the phone messages, also—between the two oxygen machines and the window AC, I NEVER hear my phone ring (or the doorbell—if you come to visit and you’re committed, beat the door for all you’re worth). I had such a wonderful day with Bryce and Dani. We all hung out in bed today and snuggled. We had some wonderful visits from our dear friends—the Findlays, the Beatties, Aunt Claudia and Uncle Dale, and my entire group of young women (and one YM)! The girls all came to my house and sang “Happy Birthday”, and a few were wearing their gorgeous homecoming gowns. I absolutely adore each one of my “little sisters”. Both of our families had dinner together and a little birthday party, with Papa Rog’s famous ribs (my favorite—and I don’t usually eat meat), Sellers’ homemade ice cream (so long, size 7), four crazy toddlers, and some wonderful, thoughtful gifts. Bryce capped off the evening by surprising me with a diamond eternity ring. I love him so much! The outing took a huge physical toll on Bryce, but he was happy. (He was also pumped to talk to you, Scott!)

I remember my last birthday, when Bryce and I snuggled and rubbed my growing belly. We were so excited for the coming year, and decided that 31 (32 for him) would be our best year ever. We were partially right—Dani has been such a joy, a miracle, and the fastest growing baby I have ever seen. (I realized yesterday that she had outgrown all of her clothes! She is 8 months old and is requiring size 12 month clothes, of which I had just a few items. My mom and sisters and I went shopping for baby clothes last night. She’s TALL like her daddy! Holy growth spurt!) Who knows what 32 will bring, but it started out surrounded by those I love, and I’m happily nestled next to Bryce right now (with my new sweet dude backrest—thanks, sisters!).

As for Bryce, he has made a new goal. His original goal was to be here today, and now his goal is to attend his brother’s wedding in November. Reaching that goal depends a lot on eating. Dr. Voldemort took one look at Bryce’s emaciated frame last week and chewed him out.  Bryce is nauseous, exhausted, and has no appetite. Consequently, he has lost a ton of weight (about 60 pounds). When we don’t eat, the body naturally takes what it needs from our own stores. Unfortunately, protein is cannibalized first—meaning muscle, the heart and brain. Without an adequate caloric intake, Bryce could perish from malnutrition, which is very common for people with advanced cancer. Dr. V said, “You will EXTEND your time if you eat.” That struck a huge chord, as we’re all about extension right now; so Bryce is trying to eat. Perhaps all of my nagging (I’ll admit it) about food will make sense now. ;) The first thing I did was buy everything made by Nabisco. Calories are calories, and although balanced meals make sense, Cheetos seem to go down a little better. I’m not kidding—there are orange fingerprints all over the bed. I planted an entire crate of snacks next to the bed—Oreos, Nutter Butters (protein!), cashews, Starburst (…fruit group…), caramels (…dairy…), lollipops, Twix (the delicious group), more Cheetos, protein bars (the gross group)…it’s all there. (Thanks to AlloSource for the unexpected bonus—that was money well spent!!) No, I’m not trying to kill him. I offer him meal replacement shakes all day long, and people are bringing him his favorite, Caribbean Passion Jamba Juice with 2 protein boosts. The fruit flies love our bedroom. The radiation treatments have caused swelling in his throat, so it has been hard to get food and pills down for the past few days.

Another goal we had was to tape record Bryce reading to Dani. We both read "Rapunzel" to her and recorded it with an old-school tape recorder. We even did the voices. When we played it back, all we could hear was the hissing of Bryce's oxygen interspersed with my screechy witch voice. Bryce was too exhausted to rerecord. If anybody has any good ideas for recording that don't include cutting off Bryce's oxygen, please let me know!

To the 74 ROCK STARS who donated blood (or attempted) last week—you have made a DIFFERENCE. Thanks to Ashlan, our soon-to-be-sister-in-law-in-law-or-something-like-that, who quietly stepped in and organized the donations in behalf of Bryce. You are a great friend! To the doctor (bless his heart ;))who was hesitant to chase Bryce’s dwindling blood counts due to “limited resources”, these awesome people have provided Bryce with priceless time with his family, and more than quadrupled anything Bryce has used thus far! Thank goodness for our beloved Dr. Isotope, who values each moment Bryce has on earth. What a good man! We took Dani to his office last week, and she was greeted with kisses and giggles from the magnificent staff at Dr. Isotope’s office. You ladies ROCK!

On a sad note, my friend Aimee, who shares a birthday with me, lost her beloved sister today. The news was sobering. Jessica was one of those truly GOOD people who was sweet, smart and a great flutist. She fought her illness for 30 years with tenacity and courage. Aimee is fighting for her own life as well, with the same valor and hope. Please keep their family in your prayers and thoughts, and plead extra hard for Aimee’s success at battling her own cancer. Cancer sucks. Please continue praying for Christine and Keith as well!

For your pleasure, here is a picture I took of Dani today. She loves bathtime!

You're looking at the new look and feel of brycedbrown.com.  A little bit of clean-up is still in order (like the photo gallery) but there were a couple of things we needed to get out quickly.  Most importantly there is some time sensitivity on the golf tournament registration so if your planning on attending sign-up now.

Brown Ryce Golf Tournament
Friday, October 5th
Starts at 9:00 AM
*Must pre-register by Sunday, September 30.

If golf isn't your game but you want to help out the Brown family financially you now have the ability to contribute any amount that you would like.

Many thanks go out to the folks at iTransact for handling the actual money transaction in a safe and secure manner.

 

 

 

 

Thursday, September 27!!

200 West 200 North

Bountiful, UT 84010

Need directions?

Hours: 3-8

The turnout for blood donations yesterday was great! I saw a lot of people who truly love Bryce and were happy to give a little of themselves, literally. It doesn't hurt, it's for an amazing cause, and everybody who goes gets to sign a card for Bryce. He opened them all today and read the messages. He loved them! Thanks, Ashlan, for taking the lead by organizing the Bryce aspect of these blood drives. If you missed your chance yesterday, there is one tomorrow also! The address is above. Let's blow yesterday's numbers out of the water! Does anyone want to stake it out and take pictures of Team Bryce? As Katie said, "I donated blood today and BLED ORANGE for Bryce!"  (Thanks, Katie, for all the flowers you have sent to our home! There's something wonderful, sweet, and ALIVE about fresh flowers! )

Coincidentally, Bryce is in the hospital today, having another blood transfusion. His blood values are way off again. He has been listless and pale, so we knew he was due for one. Although it's hard for Bryce to get to the hospital because he's so tired, the transfusions are worth it  He seems to feel stronger and look better for a few days after the transfusion. Those days are well spent with Danika and our families. Please help give Bryce those days with us by donating just one pint of blood! We have another friend who is in need of blood consistently, so even if you don't like Bryce (HA!), please donate for her. (We love you, C.T.!)

Thanks to Bryce's friends Jared and Darrin for setting up the Brown Ryce Golf Tournament! Bryce absolutely loves golf, so it's entirely appropriate. I'll try to get him to come to the kickoff. You guys are right--killing cancer is expeeeeeeensive! Every day with Bryce is priceless, though--it's money VERY well spent! The date will be October 5, and the guys need an RSVP by Sunday night. Thanks for thinking so highly of Bryce and our family. We are humbled by these outpourings of love and support.

Posted by Bryce's friend Jared:

The Inaugural Brown Ryce Golf Tournament!

We’re putting together a Golf Tournament to merge the loves of Bryce’s life: golf, family and friends (not in that particular order). J To reserve a course and time we need to get a rough estimate of how many people would be interested in joining us up at Bountiful Ridge Golf Course either Friday the 5^th of October or Friday the 12^th of October. Entry fee will be $100 and all proceeds will go to help the ever increasing expenses of “KILLING CANCER”. Please contact Jared Poulson at 801-725-7575 (jared.poulson@itransact.com) or Darrin Townsend 801-664-9075 (darrintownsend@hotmail.com) to let them know if you’d be interested in playing in the tournament or making a donation of any kind. Please spread the word ASAP so we can all get together while it’s still warm! Everybody is invited!

TUESDAY, SEPTEMBER 25!!!  BLOOD DRIVE!!!

Let's overwhelm them with Bryce supporters!! Bryce's friend Tracie will be there taking pictures of Team Bryce. Hopefully they’ll have enough orange coban!  The hours are 3-8.

2633 South 50 West  (LDS church)

Bountiful, UT 84010

Need directions? It's very close to I-15, so no worries about getting lost.

To all the wimps: I DOUBLE-DOG-DARE YOU.

For all of you who were wondering, we got the results of the MRI today. It's bad. Very bad. Since his last MRI just six weeks ago, Bryce has developed six brain tumors. I don't even know what to say about it. We're heartbroken, disappointed, sad, and starting to talk about things nobody wanted to bring up. Our families have shared buckets of tears this afternoon. Were you waiting for another nudge to donate blood? Consider yourself nudged.

WE’RE KILLING CANCER!!!

 

Thanks to everybody for asking about blood donation! ARUP is a good place to donate blood (they're next door to my office)--they have a Bloodmobile and a direct relationship with local Utah hospitals. The Red Cross is also excellent. There is a blood drive scheduled in our area this week! (Thanks, Maegan!!) LET'S ALL GO!!!!  (It's also 3 days before my birthday, so it would be a nice gift to see pics of everybody's arm bandage!) The details are:

 

Bryce says:

A group of old high school friends (John B., Jason “Julio” R., JB C., John W., Brian “Lips” P., Travis A., Eric O., Cory H.) descended upon me last night. Thanks to John B. for organizing it (and for bringing my wife flowers and for my Jamba juice). I haven’t laughed that hard in a long, LONG time! From stories about John W. and his propensity to show his love of the “moon”, to memories of “hat hunting” in the West desert, we covered four years of hilarity, stupidity, and the miracle that we didn’t end up in jail. As usual, Julio led the discussion with Cory providing counterpoint. It was really good to see these guys whom I haven’t seen in years, and whom I still consider some of my best friends.

I know we must have been having a good time, because I stayed downstairs for about two hours. I haven’t made it downstairs for that long in weeks. I really want to make sure that we do this again, not only with these guys, but other friends as well. (Jerd, Dern…there are so many people, it’s hard to name you all.) It was very therapeutic to laugh until I almost puked.

One highlight of the night was when Julio brought out a classic tape—one we all loved and have missed, “Coolin’ at the Playground” by Another Bad Creation (aka ABC). Remember those kids that Bel Biv Devoe found and produced? We listened to “Iesha” several times and couldn’t stop laughing. I was also forced to break out a modified version of the “Bryce dance”. Another highlight was Eric’s old camcorder tape of us attempting to go hunting in the West desert. Good times. Thanks everyone for making the effort to come see me. I know some of you don’t live close by anymore, which makes it that much nicer that you were willing to come.

Speaking of good times, I’m now convinced that my wife either loves me more than everybody on this earth, or she’s attempting to kill me. Just two nights ago I was awakened from a sound sleep (something I don’t get that often these days) by a very serious wife. She proceeded to tell me that she had researched the cure to cancer, and it was in this mug in her hand. All I had to do was drink it. BUT there were a few conditions: I couldn’t smell it first, I had to take it all in one shot, and I wasn’t allowed to puke it up. With my nose plugged and my doubts high, I attempted to shoot the whole nasty mess. As soon as it hit the back of my throat, it wanted to come back up. I forced half of it down, but it was all I could do to prevent puking. Tammy wanted me to finish it, but that would have meant losing it all. I’ll never touch that stuff again without documentation that it WILL kill cancer.

This weekend has been full of good times with old friends and family. I can’t believe how lucky I am to have such good people around me. Thank you to everyone, and please keep the prayers coming. We need every one of them. I love you all!

“Shoot the Hawk”

 

Tammy Says,

In my defense, I really do love Bryce!! The mixture was so good--powdered greens of all kinds, flax oil, multiple vitamins, to name a few ingredients.  He told me it tasted like "licking the undercarriage of a horse", but I tasted it first. It tasted like our lawn.

The MRI went well, but we haven't heard the results yet. That will happen today, after Bryce gets a new PICC line and radiation to his chest. Cross your fingers for us!

 

Tammy mentioned at the end of her Hospital Standard Time post that her friend Becky was coming over to make a plaster cast of their hands.  The results are in - pretty cool if you ask me!

The Brown and Sellers families have supplied literally hundreds of the Killing Cancer wrist bands and yet there still seems to be more interest.  Are you willing to make a small donation to cover the cost of the bands themselves and any necessary shipping?  If so send in a comment (indicate if you would like it to not get published out to the world)  indicating how many you might like.  With enough demand we'll create an on-line order form order up another batch.

We’re sitting on the bed at home, just vegging together. I’m happy to be next to my boy. We’re praying for a lot more time to sit here together. I’m also happy about all the awesome comments people have been posting! I read the comments to Bryce every night, which brings him joy, laughter and peace. If you're reading this, drop Bryce a message. If you're one of the boys from back in the day, feel free to embarrass him. He loves it! (I’d like more of a shout-out from Arapeen Drive and Troy Circle, because I do miss you guys—you’re my second family! Bryce loves to hear from his Bintz family also, so type away!)

Dani was banished from the house yesterday. She has been leaking fluid from her face as a result of her teething, but yesterday the coughing and sneezing began. Great. All Bryce needs is a fatal case of pneumonia, right? My beautiful sister Holly jumped in and took Dani until she is better. I miss that baby!! This brings me to my urgent plea: If you’re sick, or thinking about getting sick, or your neighbor’s dog is sick, PLEASE visit with us via telephone. Our home is always open to visitors, but not the lethal kind.

How sweet is this—Brady, Bryce’s younger brother, has been sleeping on our couch every night. He and I have both been dealing with severe insomnia, yet our minds are at ease when we can be around Bryce. I haven’t wanted to use any sleep aids because I want to be ON in case Bryce needs me. I’m also still on call for work 24/7 for questions and screening, which requires me to be instantly alert (or at least sound alert). Having Brady downstairs has relaxed us both considerably, so my need to sit up and stare at Bryce all night has diminished a bit. Brady sleeps a lot better also. I’d say “Little B” and I are now sleeping about four hours a night, plus or minus two hours. Not bad!! We love you, Brady!

Bryce is well into week two of his Nexavar/Temodar treatment. This is the drug combination he would have received in Las Vegas, but that treatment wouldn’t have started until September 24^th, to ensure an untainted guinea pig. We don’t have time to be rodents, so we found someone who would hook us up here in Salt Lake. Ahh, Dr. Isotope—we love him! Bryce’s dose of Nexavar was doubled today, so we’re going full steam ahead. Today was also day three of radiation. The stupid tumor around Bryce’s heart has snaked an arm around the back of the heart and paralyzed his phrenic nerve, thereby deflating his right lung. Dr. I is hitting the heart and nerve with radiation, hoping to reanimate the diaphragm. He will have an MRI of his brain tomorrow. Let’s pray for good news! After Bryce’s blood transfusion last week, wisely prescribed by Dr. Isotope, Bryce looked and felt a lot better. His pale skin sprung to life and his energy level increased markedly. However, since his bone marrow isn’t healthy, he can’t produce blood very well, and he is now pale and weak again. He still looks better than he did a week ago. We have no idea how well these drugs are working, but we’ll give it some time before getting too restless. Bryce is alive, and we’re happy about that. He’s beating so many odds.

I will now shamelessly and emphatically implore all of you to please DONATE BLOOD! Bryce has had the equivalent of 12 donated units, which has saved his life thus far. That means 12 people have given my husband some more time to play with his baby daughter, kill cancer, and touch so many lives today. The longer Bryce fights this, the closer we are to a miracle and a cure. I would love to see blood drives on Bryce’s behalf, as that is something we ALL can do!! (Mikey, you’re good at that!) My sister Steffani donated yesterday, as you can see by the picture above. She’s sporting the coveted “WE’RE KILLING CANCER” wristband I designed. (And she’s gorgeous—can you believe she’s the mother of twin toddlers?!)

Since ALL of us are praying, please add our dear friend Christine to your prayers. Her melasuckanoma has returned and is giving her a beating. She is a wonderful, caring, generous, single mother of two little boys. She parted with her lucky coin; the coin that saw her through countless treatments and surgeries, and sent it to Bryce for luck. Bryce was a stranger at that point. She has had her church group praying fervently, and they have sent Bryce a prayer blanket. Christine and her babies need a miracle. Also, please pray for another dear friend, Keith. Keith is a daddy who is fighting this disease for all he’s worth. He and his wonderful wife Suzan were also strangers, and Suzan sent Bryce a beautiful prayer blanket from their congregation in Georgia. Where do we stop naming these strong people? Tara, Brian and Jenni...you know what? People are GOOD. If any of you are interested in seeing how awesome people are, check out this site. These are all melanoma warriors—all GREAT people! (Elaine—I have seen you there!! You are the BEST!)

From Bryce:

Thank you all for the support. I never imagined how powerful the love and prayers from friends and strangers could be. My goal every day is to stay positive and keep praying for that miracle. I KNOW we can achieve it! I still wish I were going to the MFFB golf tournament tomorrow morning. :( <

We love you all!

Our story about Bryce’s cancer is fascinating and has not been told in its entirety.

Rewind to the early 1990’s when Bryce and I were in high school. We attended BountifulHigh School, where he was Class of 1992, and one year ahead of me. We never knew each other back then, even though our school wasn’t that big. We think we may have had one class together. We took our lifeguard and swimming instructor training courses at the local pool around the same time. He worked there (the Bubble!) as a lifeguard and swimming instructor and I taught at a private indoor pool. We never met!

During the next decade, we went separate directions—in so many ways. (These interim years will make a delightfully mischievous novel some day. Don’t worry, moms and dads—I’ll use a pen name. ;) Meanwhile, his family moved into my family’s neighborhood. In June of 2000, I had just celebrated my third wedding anniversary with someone else, and Bryce had just moved back to Utah from Manhattan, where he had lived for a few years. (We still hadn’t met.) Bryce went to a dermatologist to have a mole checked on the front of his right thigh--the mole had changed from flat and brown to a raised, black mole. The mole was a product of his years as a lifeguard, where he sat on his tower and tanned all summer long. After the mole was removed, Bryce waited an entire week without hearing any results. On Bryce’s 26^th birthday, his dog had to be put to sleep after suffering seizures; then came the phone call from the dermatologist stating that the mole was melanoma and he had scheduled Bryce for surgery the following morning.

Bryce’s surgery was big-time. A trace of melanoma was found in a sentinel node, which led to an incision from just above his knee all the way to his hip so his lymph nodes could all be removed. The wound took over a year to heal, since it was located where the leg flexes and would break open constantly. During that year Bryce was on Interferon, which is a drug he had to inject into himself with a needle every day. Interferon is a protein that occurs naturally in the body to fight viruses. It’s what makes you feel sick when you have the flu. Poor Bryce was bedridden for much of 2000 and 2001 due to a wound that wouldn’t heal, and feeling like he had a wicked case of the flu constantly. He was fortunate to be able to live with his family during this long ordeal. By the end of 2001, he was healthy and cancer-free.

Meanwhile, my marriage of 4 ½ years ended during the Christmas season in 2001. I left my life in Portland to return to my parents, brokenhearted and broken spirited. I met Bryce several months later in the neighborhood church our two families attended, where we became friends and workout partners. Since we were both recovering from life-altering and mind-blowing events, we took a long time getting to know each other. He restored my faith in God (and men ☺) and increased my spirituality through his kindness, wisdom, his perseverance through trials, and his down-to-earth spirituality. Bryce was the nicest, most laid-back, confident, happiest person I had ever met. He could walk up to any stranger and they’d be best friends within minutes. He made me feel beautiful, smart, happy and carefree. We got married in March of 2003.

During this happy time, Bryce never failed to visit his oncologist regularly and get his CT scans. The appointments always went well, and the scans were always normal. In 2005, the doctor was worried about some swelling in Bryce’s leg and sent him for a PET scan. The PET was normal. After five years cancer-free, the appointments and scans were changed to once a year. Melanoma was the last thing we worried about.

This past January changed our lives forever. Danika was born! We had wanted a baby for a while, but we were told we would have a difficult time conceiving a child. We didn’t take ‘no’ for an answer, and we beat the odds. Dani is beautiful, happy, hilarious and the perfect mixture of the two of us. And she doesn’t shed. We LOVE her so much, and we love being parents. We planned on having one or two more kids in a few years to complete our family.

In March, Bryce felt a pain under his sternum, which hurt worse when he took a deep breath. Ibuprofen killed the pain. We figured it was a cold or infection that could spread to our new baby (RSV paranoia!), so Bryce went to his primary care physician to make sure it wasn’t contagious. The doctor was confident that it was just an inflammatory response, especially since it responded so well to ibuprofen. Bryce felt better a few days later with no recurrence.

Bryce seemed to feel a bit more run-down and tired in April and May, but that wasn’t alarming or uncommon for him. He LOVES to take naps, which became more frequent after slacking off on exercising due to the baby.

In May, Bryce’s right shoulder started to hurt. Ibuprofen controlled that pain also. The exact location of the pain, combined with the range of motion exercises that provoked the pain, led to the diagnosis of bursitis. High doses of anti-inflammatory drugs seemed to cure the shoulder pain. No worries.

Bryce and “The Guys” went golfing on the 4^th of July, and Bryce tweaked a muscle in his butt during the game. (A golfing injury—total oxymoron…) The pain was so severe that night that he couldn’t sleep. He went back to the same primary doc who diagnosed his pain in the @$$ as Piriformis syndrome, a version of sciatica. Rest and stretching exercises took care of that rather quickly.

I went to a work conference several months ago in Washington D.C. where I heard a presentation on malignancies. Melanoma came up as one of the most deadly cancers with an extremely high incidence of recurrence and metastases, even long after being pronounced “cured”. The speech scared me, so I went back to my hotel room and called Bryce and told him to get his butt in to see his oncologist. Now. What interesting timing that speech was…

Bryce went to his oncologist about 8 weeks ago, feeling fine and not worried a bit. He had just played 18 holes of golf that morning! He had the head-to-toe exam, blood tests were run, and he was pronounced “clean and cancer-free”. He didn’t have to do a CT scan this year either, since he is 7 years out with no evidence of disease. They moved him to an every other year CT schedule. The blood tests were “a little off, but the doctor wasn’t concerned”, according to Bryce when he called me after the appointment. He told the doctor that he may be getting a cold, because his lungs were feeling a bit congested—no big deal, but he didn’t want to give anything to Dani. Given the blood results and the congestion, the doctor wrote an order for a chest x-ray if it would make Bryce feel better. Bryce detected no sense of urgency or concern, so he didn’t go for the x-ray.

A few days later, Bryce came home from work early because he felt very tired and run down. He just happened to bring his blood test results home with him. I took a look at the results and freaked out, because they weren’t just “a little off”, EVERY value was off! I called my Dad, who definitely felt a sense of urgency—he said to get Bryce in for his chest x-ray immediately! The next morning, Bryce played another golf game then went in for his x-ray. I told him to have the results sent to my Dad, as well as the oncologist. I called my dad’s office all afternoon, pestering his nurse to procure the x-ray results. Finally, they came through the fax as I was talking to her. She read them to me as they came off the fax. Obviously, she wasn’t expecting the results to say “enumerable malignant growths”, etc. Neither was I. (I’m still glad you read it to me, K. Nobody else would have told us the truth!) She ran the results down to my Dad, who was operating. Meanwhile, I told Bryce to play with Dani while I took a bath. I sat in the tub and sobbed, using the running water to hide the sound. I felt like I was going to throw up. My mind was racing and I was in shock, because I knew what the prognosis was just from hearing the x-ray results. Dad called me as I sat in the water, and he was choked up also. He said he’d come over after surgery. Bryce knocked on the bathroom door, cheerfully wondering when I was going to get out of the tub so we could get some dinner.

That was 8 weeks ago. Go back to the first post in July to read the rest of the story as it happened.

How many times can I start a post with "Here I sit in the middle of the night, watching Bryce breathe and thanking God for each breath he takes", without everybody getting desensitized? This has become our life lately, but I'm honored and blessed to be the one helping him through these breaths. I'm not trying to be cheesy (mmmm....cheese...), but I'd do this every day for the rest of my life just to be with him. What an awesome, tough, strong, svelte (he has lost 50 lbs since this started) stud! Every day he’s here, he is once again beating the odds. I am a lucky girl to have Bryce, and I’m proud to be part of his butt-kicking team.

Bryce had an appointment this morning for a chest CT at LDS Hospital, and we’re still here. It’s tomorrow now. That was a LONG appointment. The CT found a partially collapsed lung, tumors in a rib and vertebrae, more tumors in his lungs, and his heart needing more radiation. His hematocrit was about 20 (that means his red blood cells are running low). We knew his blood count was down on Monday, but that oncologist decided it was too soon to transfuse him. He gave him a shot of Aranesp to increase the red blood cells, but apparently that takes a while to work. Dr. Isotope, whom we saw this morning, decided to give Bryce 3 units of blood because he was obviously in peril. I’m constantly amazed at the huge differences in treatment each doctor pursues. One doctor says one thing, another says the opposite.(Incidentally, Monday’s oncologist made me promise that he would be solely in charge of Bryce’s treatment from now on. Um, NO. Isotope and Voldemort seem to be the only docs who actually care about Bryce. Shall we be Team WaSP from now on? That stands for Isotope, Sellers, Voldemort. It’s also a wicked awesome hair band…) We checked into the hospital at 11 a.m. and they finally hooked up Bryce’s blood at 10 p.m. His PICC line was clogged so they started a peripheral IV 8 hours later. I didn’t think they could get any slower than last time. Dr. Voldemort came to visit several hours ago, and said the right lung is not collapsed—it is unable to inflate due to a tumor in the mediastinum which has messed with the phrenic nerve. As a result, the right side of his diaphragm is paralyzed. This nightmare keeps getting worse. Dr. V said, “nobody else would have fought for this long—he’s tough!”

Bryce’s parents have been with us all day, lending moral support. They have been so helpful and generous to us! My parents have been in Heber (about an hour away) for a 2-day meeting at which they were both participants. I think Dad had several speeches. I walked down the hall this afternoon and saw my mom standing at the nurses’ station, holding her bags and an armload of stuff from the meeting. She hitched a ride to the hospital in Salt Lake City after hearing about Bryce’s admission! She wanted to relieve Jenni of babysitting duties so they could all be with Bryce. Dani was at the fair with Jenni, Mac, Brady and Ashley (Bryce’s siblings and niece) for the evening, so Mom drove back to Heber. Dad still had some speeches to deliver, so he had to stay. My mom is the most selfless, compassionate, loving person I know. She is AWESOME.

Besides Bryce, another victim of this lurid ordeal is Dani. She just turned 8 months old, and has spent the past 2 months being passed around. We miss her SO much! Our families, being ever so helpful, have kept Dani at their homes for the past several nights so we didn't have to worry about her if something were to happen. I just want to hold her right now and kiss her chubby cheeks, and squeeze her chubby legs, and rock her to sleep singing, "There's a great big frog, sitting on a log; shhhh...he's fast asleep.." (our favorite lullaby). I miss her little baby teeth, her tiny baby hands that grab at my face, and her little baby coos, “daa-daa”, and growls—yes, she growls like a bear! Grrrrrr…. J

Hopefully things will start looking up. I’m praying and wishing and hoping the TKI drugs work. We don’t know yet. Hopefully that’s not a bad sign. It’s Saturday morning—whoa, it’s after 6!!—and I want to get him home, back in our bed, and bring our daughter into bed with us to watch some cartoons. I wrote this post off and on all night, because the nurses were in here at least every ½ hour. I’m learning a lot about the human body and sleep. It’s totally unnecessary! His IV started squirting donor blood all over his bed in the middle of the night, so they tried his PICC line again and it worked. He has been breathing all night, his color is getting a little better, he’s getting his third bag of blood, and it’s almost time for me to give him his chemo.

My friend Becky is coming over today to make a plaster cast of Bryce’s hand holding my hand and Dani’s hand. What a beautiful gift. I’ll post a picture.

Please let today be a good day.

Bryce’s family took Dani overnight, as my parents did two nights ago. They were all hoping we’d get some good sleep, but it’s past 5 a.m. and I haven’t slept yet. I’m so tired I’m nauseous. I just got Bryce back to sleep after he was awake for an hour, coughing up stuff and measuring his very low blood oxygen saturation. I keep hearing strange noises, which scares me since we have about 70 dB of noise in our room at all times (2 oxygen concentrators!). It sounds like animals are running around my house or cats fighting, but all of my animals are gone. I won’t wake Bryce up to protect me, because he doesn’t have the strength to get out of bed and waste any bad guys. I don’t want him to feel useless (that’s not my word—it’s what he called himself when I heard a loud noise in the middle of the night), so I won’t bring it up. I feel like puking, crying, sleeping, etc., all at the same time. Another scary thing is if I fall asleep, I may not wake up fast enough to help Bryce breathe. I would give anything right now to spend a few days alone with Bryce, sleeping. Sleeping without interruption or feeling irresponsible, like I’m neglecting my baby. (Poor Bryce is moaning, groaning, sniffling and talking in his sleep right now…)

Many of you have tried calling and not gotten an answer. I’m so sorry. I wish I had a great excuse for each of you. The truth is, I just can’t do it sometimes. I hear the phone ring and can’t handle the sound. I’m totally overwhelmed. I may be having a “moment”, or on the other line, or talking to a guest at our home. Some times I just can't talk and at other times I can’t seem to put it down (when Bryce and Dani are sleeping). The best time for chatting is late at night, which sucks for my East Coast friends and family.

Brycey visited a new oncologist and started his new round of chemo on Monday. It’s a month-long combination of Temodar and Nexovar, and they’re pills; --I SWEAR, I hear noises in my house!!:( -- He hasn’t suffered any side effects yet. These are the TKI drugs—tyrosine kinase inhibitors. These are our last shot, so everybody pray for a miracle!!

After the oncologist, we went to the hospital for a chest x-ray. Papa Rog drove us around to our appointments, so he took Bryce out to the car after the x-ray for air conditioning while I ran the films to Dr. Voldemort for his opinion. His opinion was not good. The tumors in Bryce’s lungs have doubled in volume since the last chest x-ray from 2 weeks ago. A very somber Dr. V came out to the car to talk to Brycey and listen to his lungs, and he heard tumors. (I have no idea what tumors sound like, either!J) He scheduled Bryce for a bronchoscopy the following morning. Papa Rog and I took Bryce home to his bed, and then we went to Huntsman Cancer Institute pharmacy to pick up the chemo pills, since it is the only pharmacy that carries the stuff. Two hours, four days’ worth of pills and $500 later, we came home and tried to get Bryce to swallow the pills. His throat is so swollen and he is so nauseous, he kept “losing” everything he swallowed. I had to violate the pharmacist’s orders and break the pill into some juice just to get the chemo into him. Our dads, Brady, Cousin Jon and Bishop B all gave Bryce a blessing that night.

We were at the hospital at 7:30 Tuesday morning for the bronchoscopy. Bryce’s parents and sister were there, as well as my good friend Mikey. Dad had surgery upstairs just after Bryce’s procedure, so he was able to sit in and watch the bronchoscopy. The procedure went well, and Dr. V was able to pull out two large tumors from Bryce’s lungs. Bryce was able to breathe better immediately. We were home by early afternoon. What a day. Thank you SO much, Dr. V!

Bryce has been fighting nausea and taking his chemo for the past day. We’ll all cross our fingers, pray, and do whatever else we can so that this stuff does something!! Dani is growing 6 teeth, so she’s absolutely delightful to be around right now. I DO love that baby!!!! Please keep praying for Bryce! I’ll do my best to keep everybody up to date.

We keep checking Bryce’s oxygen saturation every few minutes, hoping to see a number above 80. He is now on 10 liters of oxygen with CPAP, and not maintaining too well. If the chemo had worked at all, he’d be finishing round 3 today. Instead, he’s breathing shallowly and desperately, praying that tomorrow will bring the one thing that will extend his life here with us.

This turning point from “stable” to “whoa” happened last night, after Dani went to Bryce’s parents’ house for the night. We were hoping to get some good sleep, but instead we were up a lot, checking the monitors and praying together. Bryce noticed a definite change in his lung volume yesterday, which was a depressing reminder of how real this situation is. He is having a more difficult time with both inhaling and exhaling, and can’t seem to catch his breath. Last night, he ate some solid food (yay!) and then took a shower (double yay!), but he started vomiting and losing his strength while in the shower. (Reminder to self: clean the tub…) I helped him crawl into bed and we checked his saturation, which was hovering around 70% on 9.5 liters. I turned his machine up to 10, which is as high as it will go. I called Dad, who is in Jackson Hole (he just completed the LOTOJA bike race—congratulations!), who instructed me to call Dr. Voldemort. (Seriously, Dr. “V”—this is so much harder to type than your real name.) Dr. V said it was our decision—we could come in and have a scan and a bronchoscopy, or watch him over night at home and decide what to do in the morning. Bryce said it best, “I have a feeling if I were to go to the hospital, I would never come home again.” Dr. V agreed with that statement. We stayed home. His sats are in the low 80’s this morning, and Bryce doesn’t feel like going to the hospital. I don’t blame him. We’ll hang out at home today. With Dani gone for most of the day, I can stay in bed with Bryce and keep an eye on him.

The Las Vegas plan changed a few days ago, when we found out that we had to wait another week because of his radiation. That doctor wants Bryce to be four weeks out from any and all treatments. Our friend Christine had left me a message about her doctor in PA, saying we should call him and get his opinion. I gave the number to my Dad, who called the doctor and ran the situation by him. He said to just have an oncologist here in SLC administer the drugs, because we’re running out of time and Bryce doesn’t need to be a guinea pig right now. The plan now is to visit Dr. Casing tomorrow at noon and discuss starting the drugs ASAP. The new drugs are tyrosine kinase inhibitors, or TKI drugs. They have been successful at treating other cancers, but melanoma is fairly drug resistant. This is a shot in the dark. The most successful drug for melanoma is IL2, which Bryce isn’t stable enough to take.

Please pray for Bryce today. We’re scared and trying to remain calm. We’re praying too.

We'd love to know who is following our story! Would everybody please indulge us by posting a comment with your name and location? If you are new to blogging, just click on Comments just under the heading. Type in your name, e-mail address, your website (if you have one) in the URL box, and then put whatever you want in the comment box. Click "Submit" when you are finished.

The comments have done so much for our hope, outlook and general mood. Thank you all for leaving us such wonderful, inspirational and informative messages!

There's nothing new to report right now. Las Vegas sill isn't certain, because tests have to be run  before a plan can be formulated by the doctors. Bryce continues to spend most of his time sleeping. The Home Health nurse is coming in the morning to do some blood tests, so maybe we'll have some news tomorrow night.

Here's some good news: Bryce's little brother got engaged a few nights ago! Congratulations, Brady and Ashley! Want some advice? Enjoy every quirk, don't be afraid to hold hands in public, take lots of pictures, and remeber that life is too short to argue about stupid things. Oh, and elope.

 

 

Tammy's brother Scott sent in this picture of his family showing off their "Killing Cancer" wrist bands.

Qwest’s DSL issues are really getting on my nerves. I had to speak to tech support in India who called a coworker in the Phillipines, etc., to figure out why I have gone without internet for a few weeks. The new hardware and software arrived today, but not even my local techno-hero, Matt, could make it work. Qwest still hasn’t figured it out on their end. Please excuse the sporadic updates until I get my internet worked out. Also, my laptop (which belongs to my company—thanks, AlloSource, for allowing me to use this computer!!) has many fatal errors that randomly shut down the machine. When my finances are stable, I should invest in my own laptop.

As we are very well aware, we have virtually run out of options for Bryce. The Dartmouth protocol didn’t shrink the tumors, but the radiation did shrink Larry a little. (Right under Christine’s coin!) Bryce is still very tired and nauseous, but he is on the upswing. He is getting so thin, which is alarming to me and exciting for him. As he has no appetite, I have to keep reminding him that this is not a diet plan, and that he needs to eat as much as he can. Cancer is like a fetus, and will take the nutrients it needs from the healthy surrounding tissue. Chocolate Boost drinks are his only source of nutrition. Bryce reminds me that I need to eat also, but I’m not too worried about myself right now.

Bryce had a blood transfusion on Friday, which seems to have helped his energy level. His color is better, too. He was so worried that he would end up in the hospital again, and was wary of the transfusion. The process lasted about 9 hours, but he was able to come home and sleep in our bed. (We saw our neighbors, The Wrights, after Luke was born. Congratulations!) Thank you John Barlow for taking Bryce to the hospital and loitering with him most of the day! Bryce loves having you around and is so glad to have you in his life again. I was manhandled into having my hair done Friday at noon (faded red hair with blonde roots IS pretty ghetto, but I feel guilty and pointless even putting on mascara lately. Does that make sense?), so I missed part of the transfusion day. (More props to Paul at Salon Keiji—I love my hair!! You always know exactly what I need!)

We have had some time to think and formulate Plan B, which is completely contingent upon Bryce’s health during the next two weeks. The other known melanoma drug, Interleukin 2 (IL2), was initially supposed to be part of Bryce’s original chemo cocktail along with Interferon. These two drugs were originally removed from the protocol due to the condition of Bryce’s heart and lungs. Some major side effects of the drugs could very easily have killed Bryce during treatment. Since the current chemotherapy isn’t doing anything, the only Plan B we have is adding IL2 despite his odds of surviving the treatment. If we do nothing, Bryce’s days are numbered. If we do IL2, Bryce will feel like crap yet his days are “most likely” numbered. Neither the Utah specialists nor Dr. Gonzales feel like it is worth it to try IL2.

Our reaction to a plan with those odds was flat-out refusal. I’m sure my dad saw 254 missed calls on his cell phone when he checked it later that afternoon. By the next morning, Dad had spoken to every doctor involved with Bryce’s care, and he included Dr. Samlowski in the discussions. Dr. Samlowski was Utah’s melanoma specialist until early this summer when he took a position in Las Vegas. I spoke with Dr. Samlowski six weeks ago when this all began, and he pointed us toward Denver, since there are no melanoma specialists here anymore. When Dr. Isotope seconded the motion, we were set.

My dad explained the latest situation to Dr. Samlowski, and found a possible alternative to Plan B. Dr. Samlowski is working on some drugs right now for late stage cancer, which are in clinical trials. He is willing to bring Bryce to Las Vegas to participate in the trial, but Bryce must be one month out of chemotherapy before he can start the next protocol. That is in 2 weeks. Bryce MUST stay healthy for two weeks! It sounds doable, but last time he was between treatments and starting to feel better, his cancer grew back quickly and he ended up coughing up blood. Then there’s the issue of transport. How would we get him to Vegas? A six hour car ride through the desert? I don’t think a commercial airliner would allow his oxygen onboard. We’ll figure out the details when the day approaches.

This new plan has given us all renewed hope. Even if the medication will extend Bryce’s life for a couple of months, those months will be priceless to our family. Dani loves her daddy so much, and having a little more time to grab his nose, pull on his beard and play with his mouth will be wonderful for both father and daughter.

I am slowly getting the message through to some people about the negative effects of Mr. Sunshine. I dragged my dear friend Beth to the doctor to have a mole biopsied (no results yet), and my sisters and friends are eschewing the sun! One of my favorite teenagers has moved toward spray tanning—a miracle in itself. This is part of my mission. It will be a very meaningful act of love toward my sweet husband. Perhaps other melanoma warriors will join this fight. WE’RE KILLING CANCER!!!

Hi, this is Bryce. I have been watching Tammy type the blog tonight, and I felt like I needed to add something. I just want to thank everyone for all their support. Everyone from Christine and Suzan with their many tokens of love, to all the doctors who have been working so hard to find a solution to this tough problem, to my caretakers. Cheese sandwich, baby. I felt pretty strong today. I’m going to do everything possible to keep my strength up for the next two weeks so it won’t become an issue for getting me to Las Vegas. Thanks again for all of your prayers and love.

As I am going through this trial, it has become clearer to me how easy it is for us to allow small issues to become big problems in our lives. Having one giant problem to focus on has really helped me to realize what is important—the love of my family and friends. Thank you for that love, and please keep the prayers coming. We’re all going to make a miracle.

 

My dear cousin Nathan sent me this picture last week. He is an amazingly talented artist, a new father, and a gentle listener. Nathan made this piece several years ago, not knowing the message would give his cousin renewed hope some day. Thank you, Nathan. We will not give up! 

Several years ago I was experiencing some challenging times in my life. When this happens I often turn to artwork as a means of self expression. Yesterday I was looking at some of my work and this piece made me think of  you two. I have sent a picture of it. You have truly lived the message of this piece. I pray that you can continue to do so. Our hope and prayers are with you.

Posted by Matt the web guy - filling in for Tammy while her internet connection is on the fritz!