Friday, November 27, 2009
Nick and his sisters had a wonderful time spending Thanksgiving at their dad's with their aunts and uncles, cousins and friends. Lee and I took off to southern Utah to spend time with Lee's family, which was also a special time with family. We arrived home around midnight Thanksgiving night. Friday morning, Nick called me to tell me he had a fever. As he drove home from his dad's house (about 30 minutes away), I called the hospital to get a bed for him on the 4th floor and packed his bags. His fever only reached 101.4 and by the time he got checked in with antibiotics and Tylenol, his fever dropped to normal. He will be here until he can go 24 hours with having a fever. It has been going up and down a little bit - not too bad.
I'm so thankful he had the time to enjoy his family and FOOD. I'm also thankful we don't have to cancel anything due to this sudden hospitalization. One of our favorite docs on the floor came in to see Nick before we had even unpacked. She said, "Ok, what do you have going on this weekend that we have to hurry and fix you up for?" She was one of the docs that tried to get Nick healthy enough to go to the Mayweather/Marquez fight. Ironically, the last time he was hospitalized for neutropenic fever (which caused him to miss the fight) was when he had the same chemo he had this last time - exactly the same number of days when his counts crashed. I'm thinking we need to stop this treatment; could be me, but...
We also had a scare when he had a nasty bloody nose on Monday. We were sound asleep when Kelsey came knocking on our door about 11:45 p.m. She said, "Nick needs you." I raced downstairs to find him sitting on his bathroom floor, crossed legged, with his head over the toilet. I ran up behind him and saw blood everywhere; he couldn't get his nose to stop bleeding. With blood being my kryptonite, I broke out in a sweat, saw stars and felt nauseous. Lean on me, Nick, I've gotcha covered. Lee came down too, and while I was calling the hospital, Lee and Nick tried cold compresses, pressure on the bridge of the nose, etc. Docs told us to come in to get his nose packed, but Nick stalled, saying "just give me a few more minutes" At one point, the blood was flowing so fast, it sounded like someone was going potty. I was fully dressed with Nick's pj's in one hand, car keys in the other when he finally got it under control - took over an hour. Lee, bless his heart, brought down the paper towels and 409 to clean up the murder crime scene. We tucked Nick in the upstairs guest room next to ours so we could hear him if he got in trouble again. Apparently it was Kelsey that finally came to his rescue as he hollered for help. As I was giving him a kiss goodnight, avoiding the tissue stuck up his nostril for good measure, he grinned and said, "Mom, can you hear me now?" Then when I left to go to my room, he continued to say, very loudly, "Hey, MOM! I'm having a hard time in here!" "Hey, MOM! Can you hear me?" Then he'd chuckle - he's his own best audience, grinning ear to ear. We're a twisted, sordid family. And yes, I'm thankful for that, too!
Goodnight, my angel friends. Happy Thanksgiving
Monday, November 23, 2009
It never was about the race,
But all about her smiling face
And never ‘bout the given prize,
But always ‘bout her plaintive eyes
We first began as though a team
That shared a very special dream,
But Dorothy’s witch spoke up to say,
“You cannot run, you cannot play”
So even though she wasn’t there.
Joella’s spirit rode the chair,
And as it is, each day and night
She showed the way, and led the fight
My plan was just to push the chair
And pray about who wasn’t there
And through the thin and all the thick,
My thoughts would be on her and Nick
But that was not what fate had planned,
In ways that I can’t understand
There never was a time that I
Was in control though I would try
It seemed to me the chair was more
Than even I had bargained for
It never was too hard to roll
It carried me and thrilled my soul
No hill became too steep to climb,
(Though no one envied me my time)
Each mile marker passed right by
As I continued just to try
I thought of course of slowing down,
Or walking in some parts of town,
But when each tempting stretch appeared
The chariot rolled and I just steered
Of course the crowd stood by our side,
Not knowing who had got the ride,
And all they saw was just the chair,
No image of the spirit there
When it was done, no one could see
The fighter who had rode with me.
Not one of them could ever know
The power of our A-I-O….
fyi - A is for Adapt, I is for Improvise and O is for Overcome. Tony wrote a very nice story about his sister and why he participated in the marathon - he has pictures and everything. I'm going to have to get help to transfer his file to this blog - please check back next week.
Joella is still fighting, although the cancer seems to have the upper hand right now. Tony and his brothers are by her side, cherishing every moment with her.
Impressive, touching, real. Cancer warriors continue to march on!
Thursday, November 19, 2009
Here I sat Tuesday night, reading up on the latest updates, specifically Lisa Buechler: http://www.caringbridge.org/visit/ihavewhat - and can I say this website cracks me up every single time, because that is exactly what you say when the doctor gives you those words of diagnosis, "I have what?" Lisa is our new friend up at Huntsman as she is fighting the exact type cancer as Nick, in the same original place - the sinus. She has additional complications of health issues before cancer was ever introduced to her life. I continued to read that a "friend of Nick & Lori" came to help Lisa on Monday. Lisa is confined to a wheelchair and has an aide help her to all of her appointments, except on Mondays. Our friend, Ruth Taillac, had also read Lisa's updates, and knew she needed some help with transportation. She made arrangements to drive to Lisa's apartment across town, drive Lisa's van equipped for a wheelchair, and assisted Lisa to her radiation appointment and back home. Now, I know Ruth as she has kindly invited me to Christmas and neighborhood parties in years past, but she is much closer to fairy godmother, Denise. Denise had just visited with me all afternoon at Huntsman while Nick was getting chemo and she never mentioned Ruth's act of kindness. Turns out she didn't know, either.
Denise and I spoke later and we determined that between the fairy godmothers (Denise & Jennie), myself and Ruth, we can make sure Lisa gets to her appointments on Mondays. Serendipity played a roll as I saw Lisa yesterday afternoon at Huntsman; I gave her a big hug and kiss and let her know Mondays would be taken care of. Lisa's relief and gratitude overflowed. Because Lisa is a transplant from Alaska, her support system in Salt Lake City is not as strong as Nick's. I think we can do something about that. Nick asked me if I'll get emotionally attached (because he does) and I responded, "I already am!"
Ruth, thank you for your kindness. So many people think about helping, but can talk themselves out of it before the thought is even complete. Do we risk the emotional attachment? Do we compromise the convenience and comfort of our own family to reach out to a stranger? Ruth looked beyond Nick's story to Lisa's story and found a need she could fulfill. She has set an amazing example for her husband and children, her community, her church and those that observe from afar. All because she gave someone a ride.
Just one story among many, I'm sure. Timing is perfect, as always, because my maternal heart needed a little comfort. Nick's ANC count (number of baby white cells being produced) is .7; he is supposed to be at 1.0 before chemo can be administered but the powers that be decided to go ahead anyway. I'm worried his counts are that low after having 3 weeks off chemo (rather than the usual 2 weeks). He slept for 15 hours last night and is totally wiped out. All I can pray for is that the remaining cancer cells are wiped out, too.
We also ran into the young man - Mike Gorley - who visited Nick during his absolute worse in 2007, doing radiation and chemo at the same time. Mike just celebrated his 2-year remission anniversary. He had the exact presentation of cancer as Nick, except he had embryonal rhabdo vs. alveolar rhabdo that Nick has - alveolar is more aggressive. I encouraged him to visit the online rhabdo support group as we need a good survivor story right now.
With loads of gratitude,
Tuesday, November 17, 2009
Anyways, it was a great trip and I never find myself looking for things to do when I am there. We did some jeepin, horseback riding, roping, bar-b-que (choices of buffalo, elk, beef, and lamb), and even a hike up to Dead Horse Point and The Top of the World. Really cool.
I was also given some awesome gifts from some awesome people. First, Robin, who is a cowboy at heart and a very nice guy who is also a cancer survivor gave me a goalie stick he has been hanging on for years that was once used by a pro goalie. Name doesn't come to me now but it doesn't matter. Awesome and thoughtful gift. It will be going on the wall between my Crosby and Sundin jersey! Then the night of the bbq, the true horse whisperer, James, gave me a "moki marble" which is a piece of volcanic rock that has slowly been whethered over hundreds of millions of years to become this small "marble" looking piece of rock that is really dark and said to contain a lot of energy. Once again, very thoughful and awesome. Thanks James! Then last but not least, after learning more on the art of roping steers with Colin and James, Colin said he wanted me to take one of the ropes home with me and keep practicing so that I can try it on a horse in the spring (I tried to get my mom to run but she didn't go for it). Awesome!!
It was just an awesome weekend. Thank you Jennie and Dean!!
Anyways here are some pics.
ps... did my chemo today that was supposed to be my last but 2 more still to go. It sucks but gotta do it.
pss... I signed up for classes next semester at the U so I will be a college kid again as of Jan 11.
Monday, November 16, 2009
Dr. Chen gave her opinion from Taiwan - she recommends 6 more rounds of chemo - 3 of cycle #1 and 3 of cycle #2;
Dr. Grier gave his opinion from Boston - he thinks Nick's chance of recurrence is really, really high and chemo is only shot to fight it. Would like to see Nick finish up 6 months of treatment, using cycles #1, #2 & #3. He also respects Nick's decision to stop treatment.
Dr. Gouw gave his opinion from Huntsman - his suggestion is somewhat of a compromise as he a little more optimistic than Dr. Grier - 3 cycles of #1, which is one-day infusion of vincristine, dactinomycine and cyclophosphamide. This is the cycle that put Nick in the hospital last time, so he'll reduce dosage. This will also qualify Nick for Ariad's Success clinical trial, should Nick decide to enroll early next year. Dr. Gouw, Chen & Albritton all agree to save cycle #3 if relapse should occur.
Nick, of course, has his opinion, believing today was to be his last day of chemo treatment, just waiting to hear which cycle they decided upon. Discussion in doctor's office today was a lot to digest and filter through, leaving the decision ultimately with Nick. How many more? What a ridiculous decision for a 20-year old to make; he decided to go with 3 more. He'll have the first one tomorrow, 2nd one on Dec 7th and last one on Dec 28th.
He was to go with his dad on a cruise to New Zealand on Dec 31st. This would put him at risk with his counts low and feeling pretty crappy - he isn't sure about going now. On a positive note, he will go ahead and register for at least one class up at the U of U for spring semester.
On more positive notes, he went to Moab, Utah this past weekend - more pictures and stories to follow in a day or two. Lee and I hosted a couples retreat in Scottsdale, Arizona this week and my highlight was sharing a video on Nick's journey. Nick's little sister, Kelsey, and her team "Bukoos" took first place champions in the 12 & under softball tournament in St. George - first away softball trip with just her and her dad. And his other sister, Carly, tended to the house while we were all away, and the dogs survived!
Please say an extra prayer for the Paganelli family - visit http://www.caringbridge.org/visit/jordanpaganelli as well as for Zach McCulloch and his family - visit http://www.carepages.com/carepages/SublimeLBC. Rhabdo is a particularly brutal cancer and although there are innumerable numbers of children I follow, it is the young men that are Nick's age that really hold a special place in my heart.
May blessings of Thanksgiving be in abundance to you all. Thank you!
Tuesday, November 10, 2009
Tuesday, November 3, 2009
So now I have a super rad jersey to wear to the Kings vs Penguins game this Thursday with the Raitt family. There might even be a chance of meeting some of the team!! Lets cross our fingers.
But I want to thank Brad again for the super awesome gift! It was truly one of the coolest things I have ever received. Crosby is my idol! ha
Anyways here are some pics:
Note from mom:
Brad Salmons and I have corresponded occasionally over the past several months as our sons had so much in common: both worked at Discount Tires, both played high school hockey, both diagnosed with rhabdomyosarcoma at age 18. I have mentioned Ryan in previous posts as he referred to Nick as his "twin in another city". Sadly, Ryan passed away May 1st, 2009 after a valiant effort. He built quite a legacy through his perseverance, attitude and spirit - affecting all those who knew him. Brad and Ryan began to bond with the players of the Columbus Blue Jackets, as the entire team embraced Ryan and his fight, "Refuse to lose!" Brad and Ryan's story can be found at: http://www.teamsalmons.com/.
Brad has continued to read Nick's blog and when he saw that Nick was going to see the Penguins, he called me to ask if it was ok to do something special for Nick's visit. He has become quite close friends with several of the NHL players and they are all willing to do anything possible to help out a fellow hockey kid in need of a boost. Brad's tender heart has begun to heal by his help of others and without embarrassing him, there are many young cancer survivors who are a little (a lot) better because of Brad's acts of kindness. God bless you, Brad, as Nick is one of them. You represent Ryan's memory and legacy with honor and grace. Thank you.
Lee commented that it would take surgery to wipe the grin off Nick's face, but I don't think even that would do it! He kept saying over and over with the jersey sitting on his lap, fingers running over the fabric, "This is the coolest gift I have EVER received, this is amazing, I can't believe it!" He spoke to Brad later this evening and I'm not sure if he was able to express his gratitude verbally to match how he felt internally.
Nick leaves tomorrow for California and I believe the motorhome will be a foot off the pavement the whole way there, Nick grinning all the way.
Sunday, November 1, 2009
There are 600 buffalo on antelope island, and we probably moved around 200 in the two days we were there. Saturday we spent 8 hours in the saddle just moving them 13 miles. They simply would only move if they wanted to. But today (sunday), we got them to a full on run right off the bat so it was a lot easier. Once those guys get moving they don't stop. I felt like Kevin Costner in Dances With Wolves when he is on the buffalo hunt at a full on run. I mean you are right there with them, and you can hear them gruntin' and runnin'. Its pretty loud! I think they were easier to push today since it was a smaller herd and not as many bulls.
Anyways it was a great time and I wont forget it. Thanks Colin for the invite and I plan on coming down in a couple weeks to learn how to rope some steers.
Here are some pics of the trip, couldn't get any close up pics of the buffalo due to the fact you had to be ready to "high tail" it out of there at any moment. Only had to do it once! Call me a quick learner... ha