The Tight Wire

 

 

 

 

When Nik Wellenda of "The Great Wellenda's" crossed Niagara Falls on a high wire I was in pure amazement and glued to the the screen every step of the way and I didnt know why until today. I have always been amazed by daredevils, not because they seem to cheat death, not because they practice so hard to perfect a stunt, not because there crazy, but because somehow they are just so focused on the end result.

When Wellenda initially setup this stunt he was not going to be tethered to anything. No safety device, no safety net, just his feet and the wire as well as all the practice to get things accomplished. He was bummed when his father in law who is his manager and stunt designer and someone who loves him, told him he would have a foot tether to the highwire. Wellenda made that crossing in about 25 minutes and is the only human to do it, but he did struggle along the way....

 

Two weeks ago my son Matt came off of chemotherapy and had his last lumbar puncture to inject chemo into his spine. He only takes septra now on the weekends to ward off any pneumonia. This was a huge change and really scared us as well as Matt. This medicine was saving his life and now it is not necessary. We would be walking the tight wire without a safety net. We do have a small ankle tether to the system, but for the most part we are now alot like Wellenda, staying focused, trusting in ourselves, and moving forward...

 

Two weeks later after being off of Chemotherapy brings us to today, the day after Christmas 2013. Matt had his pelvic bone marrow test to look for leukemia cells in his marrow. When we went in my daughter Kyra asked how long would it take and I said 5 hours. Turns out it was 7 hours. They finally called us while we were at lunch telling us to come back to the hospital for the results. We got into a room and waited about an hour for our main doctor to come in. First thing he said was his platellets were a little low but nothing serious. Next thing he said was Matthew has ZERO leukemic cells in his marrow. My wife Kat then spoke up and the conversation went as so," So zero, what does that mean. Doc says zero, Kat says zero, doc says zero. Kat says you mean none. doc says yes none. NO LEUKEMIC CELLS IN HIS MARROW. Zero."

So now we have monthly visits and just watch and wait. In 5 years if leukemic cells are still zero, I will have the same feeling Wellenda had when he step foot in Canada after crossing the Niagara falls on a tight wire...



The Green Bridge

 

 

 

 

Every Labor day weekend for the last 3 years we have taken a pilgrimage of sorts to a place not many have visited or would visit unless someone was really sick in their family. We get to enjoy other families that are experiencing what we have been going through and share our knowledge and ups and downs of treatment. On the way to this place we pass over a green bridge, which in a way is the divide between everyday society where some folks dont care or have a connection with our situation or there are others that are way to over caring and apoligize every other word to I guess make themselves feel better or to quell their discomfort with the situation.

 

Once you cross over this green bridge you are 15 minutes from a place where you can relax for 3 days, sleep under the stars, not worry about how much anything costs, and just breathe the fresh air. I have seen grown men cry, people filled with joy because their child is almost cured, and volunteers who really have a connection. Nobody stares at the bald kids, or the funny walks, or the funny colored skin. Everyone understands. I wish society as a whole on the other side of the bridge could someday, even if just a little, bridge the gap and care completely.



Defining Cancer

Loss: The harm or privation resulting from loss or separation.

Guilt: a feeling of responsibility or remorse for some offense, crime, wrong, etc., whether real or imagined.

Survivor: a person who continues to function or prosper in spite of opposition, hardship, or setbacks.

Privilege: a right or immunity granted as a peculiar benefit, advantage, or favor

Blessing: the act or words of one that blesses.

Pharmaceuticals-R-Us

So as we wind down and get closer to November 23rd 2012, which is Matt's end of treatment date, I have been reflecting on about how many pills he has taken over the last 3 years. This obviously does not include liquid medications, liquid chemo, or other drugs administered by needle. I have estimated the number to be about 4000 pills and that is low balling it. Am I worried about all that medicine he has taken and the long term affects. Yes, but the reality is all that medicine, which in the beginning of treatment we had to find very creative ways to administer, probably has saved his life...

These days I often poke fun at those medical commercials that say take this pill and it will cure what ailes you, but possible side effects might include a whole host of nasty things depending on the physiology of your body, and your diet, and if your family has a medical history of one thing or another.

So, if my son has bug eyes, itchy scalp, heart burn, abnormal tick, mood swings, steriod rage syndrome, and occasional dry coughs caused by side effects from all those pills he has taken, I smile and think I will take him that way. everyday, as long as the leukemia goes away...



Kids and Art Auction

http://www.eventbee.com/v/kidsandartorg 

Art inspiring kids with cancer. Please join us in an evening of family, friends and art.  All art that will be auctioned off has been created by kids with cancer and thier families.

Family game night

Wether it's yatzee or monopoly you cherish those fun times you have with your family. You laugh and have fun. Some times it has to be at the hospital
But it doesn't matter, as long as your playing together.

Special spaces

Over the past couple of days our rooms have been being renovated by an amazing company called Special Spaces and are very grateful for all the volunteering and donations. So thank you to home depot, best buy, okra and everyone else.
It's kind of sad being spite up with my brother, because for the last seven years he's always been sleeping in the bottom bunk of our bunk bed. But on its own it's also exciting to finnaly get my own space to do homework, hang with friends, ect. So very interesting I will show pics of our new rooms. (:

Making Memories

Once Mattie was well enough to start experiencing life and not the inside of a hospital room, we as a family were on the fast track to have experiences and do things that normal families dont get to do our would never consider doing with young children. For example, one of Matties favorite movies is Transformers 1 . Yes it is violent in parts, but after a long talk with Matt and having an understanding he was allowed to watch it. Yes this is a simple example so a more elaborate instance would be jumping into the ocean with a wet suit on and boogie board in hand and taking on 7 foot waves and having a ball. I was pleasantly suprised that his sister Kyra jumped into the fun as well and we had the most memorable time ever.

So last summer 2011 we were heading to our favorite beach on Monterey Bay called La Selva or Sand dollar beach.In passing Kat mentioned to one of her aquaintance Dottie that we were heading down and Dottie mentioned she had a condo beach house on La Selva. She knew of our medical sitiation and out of the kindness of her heart offered it to us anytime it wasnt booked up. Kat booked it for my Birthday this February 2012 and we will forever remember it as one of the best times ever.

Sometimes building sand castles and watching them melt back into the sea, swimming in the ocean, and hearing the waves and watching the sunset is what the soul needs...

Our Shooting Star

In reference to a post back in mid December titled "A star is born" we now have the link to the PBS News Hour piece that was done to bring attention to the fact that the advancements in drugs and therapies in the last 40 years have made all the difference. Mattie and I dont have a speaking role, but are featured about half way through the piece. If I had been diagnosed at Matthew's age, which would have been 1972, the probability of morbidity would have been very high and all that I have now would have never happened. I guess I am lucky...



http://www.pbs.org/newshour/bb/health/jan-june12/childrencancer_01-12.html

A Mother's Job

Cancer.  It is the worst 6 letter word anyone can hear in a diagnosis. It is life changing.  A journey.

3 years ago, when we got the call my focus was on saving Matthew’s life. We are so blessed that in 9 moths this will be all behind us and now we have been thinking about life after cancer.  Is there life after cancer? And, is it different? For Matthew’s sake, I hope so.

Oddly enough I have great respect for cancer. So much so that I took a job working for a company who manufactures much needed drugs to combat cancer.

So while Matthew’s journey down this road is nearing an end, mine will continue until there is a cure or I retire. A mother’s job is never done.

Friends, the good & the not so good

What I've realize over the past week is that friends will always be there even if they get mad for no reason. Friends will ALWAYS give you a shoulder, through thick and thin. Friends reach for your hand but touch your heart. To me there practically a sister.

Heres a shout out to my sisters: Alice, Nina, lauren, Elaine, Meiya amanda yes, I'm talking about you.

Staying strong

"Cancer". CANCER! When I hear people say that, that word, to me it's a slap in the face. People talk about how serious it is or how terrible it is, but they wouldn't know. I know because I live and breathed it second hand next to my brother. I hear it at school and in stores, and just about everywere. The hard part is when people find out they assume the worst even if you can almost grasp the end, and it feels like there pulling you away, shooting you down when your so close to success. So close now, hopefully.

My experience

This is Kyra and I am Matthew's older sister. In the beginning, I was scared and felt lost. I was now a sibling of a cancer patient. I remember our pediatric doctor calling my mom saying that we needed to go to Stanford hospital. we were there for 8 hours. Then dad took me home at 2 a.m.,while mom and Matt stayed behind. That's when it all started.....

Turn it up...

This week Matt goes in for his spinal tap, where they will extract fluid that surrounds his spinal cord and replace that fluid with liquid methotrexate. He has this procedure every 85 days and luckily after this he will only have this procedure 3 more times

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The build up of this compound was one of the reasons he had a CNS seizure in 2010 and since that time he had to be pre-medicated 24 hours before his procedure and 24 hours post procedure and it was done through an IV in liquid form using a medicine called amanopholine. This required a 3 day in patient visit to the hopital each time. The hospital ran into some issues last year with scheduling and having beds available so decided in order to streamline, they would make this procedure outpatient and he would take his amanopholine in pill form every 7 hours and the day of his procedure it would be about a 6 hour visit to the hospital. We had many concerns about this change and became obdurate to this new policy.We have agreed to make this change as long as no complications and will turn up our alertness to watch for anything out of the ordinary. In a way this whole thing is anything but ordinary...

Sometimes, the shoe doesn't fit.

Some people in America have forgotten how business and services work. You have a choice, shop around, get the people on your team that you trust, value, and you can profit from….You CAN fire your lawyer(don’t tell them I told you so), your accountant(if your assets need one), and your doctor or nurse practitioner at anytime you feel like it….

After or Fellow left, we were not assigned another Fellow, but an NP(Nurse Practitioner).

Erica was good, but obviously overloaded, and when we learned she was moving to the east coast because of her husband’s job, we were worried. We were assigned NP Christie and right off the bat it was a poor match. Her issues stemmed from a know it all attitude and a how dare you question my authority…We had a meeting with the head doctor and

Our social worker on the troubles and they tried to quell our emotions…

We ended up firing Christie, which was not fun, funny, or enjoyable but absolutely necessary. We now have NP Tara and she is awesome so far and we are back on track…

God bless the power granted the people and freedom we have to make choices…