Flying with out the safety net

It is hard to believe that Matthew has been off Chemo for 4 months now. We have had some wonderful and great days and some not so good days but most importantly his confidence to face the world is larger than life itself. 

Not only am I counting the days, weeks and months but I am also counting my blessings. 

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

.

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…

Why

Why?

Why ask why?

Why does such a small three- letter word carry with it such incredible angst?

Why mommy? Why GOD?

Why does a child get cancer? Why does one survive the insurmountable? Why is one taken into heaven?

Our grip to understand why is so much stronger than the most strongest bond ever and the need to understand is, perhaps stronger than that of heroin or crack.

I did not really have the time to ask why, my focus has always been free to take care of Matthew and Kyra.  John went down that path until he quickly realized it had become paralyzing  and he could no longer focus on living or healing.

I prefer to ask what? What next? What do I need to do to take care of this? What do I need to do to move forward....ahh.....relentless forward motion....my dear friend.

Life on Chemo is like a Wild Roller Coaster

Matthew's numbers finally tanked! WHOOT And somehow I feel so much better. High numbers CAN be an indicator that the Leukemia is brewing again. When Matt's numbers take a nose dive, it means the chemo is working. Treatment is such a roller coaster and I am holding on for dear life! Sometimes it is easy to feel complacent like there is nothing wrong with Matthew, he is just your avereage boy, being a boy and driving me CRAZY. And then...in the next moment he is just blah and tired. Overall there is more highs than lows these days and I hope it stays  this way!

Merry Christmas 2011

Merry Christmas 2011. This blog will be revealed to my co-authors(Kat,Kyra, and Matt) on Christmas Eve because I figured with all the get togethers we are going to be doing on Christmas day everyone whould be a little busy to read through what I have already posted. I sure hope they like it and know that they will be adding posts in places about things I have completely forgotten over the last 2.5 years. I hope they will remember that this blog is about a journey with cancer and that it is just not for us to look upon in the years to come, but other families in the future that we will meet who are new to their journey with cancer and hopefully it will help. Gob bless and Merry Christmas...

Order and Chaos

At one time before cancer our lives felt like it had some order and was good. It was alot like a jar of clear marbles and in one complete row you had a even row of blue marbles somewhere near the middle and it was orderly. Then one day someone came along and shook up our jar of marbles and or neat orderly row of blue marbles was scattered among all the clear marbles and very chaotic. Unfortunately for us in life it is easy to go from order to chaotic, but almost impossible to go from chaotic, back to the order we had...
But we try and try and try everyday and slowly inch towards a new order of things and are slowly leaving the chaos behind...

Five hour tour

So today was my day to take Mattie in for his blood draw and he enjoys when Sean does the blood draw and he even got him a small ugly doll named minus that he was going to give him for Christmas. Sean likes Poe who is Matt's green bat ugly doll so when we found out Sean was out sick today he was bummed.

Matt woke up with a 99.7 temperature which progressed to 100.7 by late morning
At that point the rule of thumb is to call in and they asked to see him right away in the ER. So we knew then our 20 minute visit with Sean wouldnt have happened anyway, even if he wasnt sick. Instead, they checked vital signs, got a run down of events, put a PIV in and took blood for cultures, took a urine sample, took two xrays and by the time we left five hours later, his temp was down to 98.7   But a couple hours later he was up over 100 again. He took some tylonol and headed for bed. We are on edge even though his numbers are not even close to being neutropenic, which would hospitalize him, but with all the tests not showing anything, this could possibly put a damper on our family Christmas and New Years. We pray this fever breaks and he feels better for the holidays...

Movie Star is born...

So on December 14th we are sitting in the waiting room waiting to be called for a blood draw and a lady approached us and let us know she was with the hospitals media and communications department and stated there was a film crew onsite that was filming a documentary for a national PBS broadcast highlighting the advances in the last 40 years in cancer treatments. I discussed this with Matt and to my astonishment he agreed to do it. All the nurses were asking for his autograph and so proud of him. They took a bit a b-roll photage of us while doing our thing and will inform us when the broadcast will air. Stay tuned for the broadcast date and time.

Anatomy of blood

So just a brief overview of the components of your blood. There are red blood cells(RBC), white blood cells(WBC), platelets, and something called ANC(absolute neutrophil count) . Each component has its specific purpose, but ANC is especially important because if it drops too low you are considered neutropenic and have no defenses against germs.

Every week we go in for a blood draw and they give us the counts, the nurse calls to confirm the high dose of chemo on Wednesdays. The chemo thus creates an auto immune deficit and the numbers ebb and flow as cells are destroyed...Sometimes RBC can go low and then you need a blood transfusion, which Mattie has had roughly 6 to 10 times...Also, if platelets are low your blood wont clot and also if real low, if you lightly touch someone they will instantly bruise. Mattie has had platelet transfusions as well. They cant transfuse WBC because your body has to create those on its own...

Winter sing

Well in mid December Matties class had been practicing two Christmas songs, one being deck the halls and the other I didnt recognize, but Mattie was very excited because he missed it the previous year due to being at the hospital instead. He stood on stage with the biggest smile and you could just feel his happiness rolling off of him. His class did very well and he had the time of his life . I think he wants to start practicing songs now for his spring sing, but I told him let's get through winter and then we will begin. He liked that idea...

Angels on deck

So in mid November our child life advocate Jake from the hospital invited Bear and I to a guys day on the bay. It was just nine fathers with their sons, Jake, and a nurse cruising up to the city in a limo to ride on a coast guard cutter that would anchor right in the middle of the bay near the GG bridge, have some lunch in their galley, get an awesome tour and history of the cutter and make the local news. It was an awesome day and the kids loved seeing the jets and the big show, the blue angels...

Halloween Party 2011

So Mattie dressed up as one of the Mario Bros. for Halloween and I was a hockey player, Kat and Kyra were vampire steam punks...we went to Kat's lifelong friends house for a kid/grown up party and had a tone of fun. The food was great, just an overall fun atmosphere. Those Greeks sure know how to throw a cool party.

The day after, Kyra turned twelve and is inching into those teenage years and attitudes, but overall she is a really good kid, who has endured many challenges and frustration with respect to cancer. She has been a real fundraiser for cancer research, spearheading  donations at school for pennies for patients, being a lead for her light the night walk, donating her art for an art in action fundraiser, and many more events to come...

2 Year milestone

In August of 2011 we celebrated a milestone of 2 years of treatment, Matt was still in remission from cancer and zero relapses. Just around that time we received more great news from Infectious Disease doctors that were treating his fungal infection. His last MRI showed little or no indication of fungus on his organs and was taken off his fluconosol medication and just setup with a followup visit for early January 2012. What a hard road that had been on top of fighting cancer. We were so glad we could cross that one off of our worry list...

Tahoe or Bust

In July we took our annual trip to Camp Richardson and camped under the stars, survived a bit of a ran storm in our tent, then trekked to the northeastern part of the lake where we found a new favorite stomping ground. We saw wonderful fireworks on Independence day. We did have to visit the ER once due to a bit of lack of energy and no pep, but he checked out okay, and we were on or way back to camping within a few hours...Life is Good !

Made a wish?

So, every child that has a life threating illness earns a wish through the Make a Wish foundation. Some wishes are to meet a singer, sports start, a dignitary or political figure and some wishes are fairly vague or cant be met because of restrictions, whether it be the age of the child, their condition, or the foundations resources. We had some troubles with Mattie's wish. They ask for 3 different wishes and cant guarantee which could happen. Mattie wished to take the Disney cruise in the bahamas not to go somewhere tropical, but he saw a video of the boat and it had water slide tubes on it, and he has been infatuated with water all his life. They said he had to be 12 to take the cruise to international waters. His second wish was to learn how to surf in Hawaii, primarily because he was a huge sponge bob squarepants fan and thought bikini bottom meant Hawaii. I think that was discounted due to budget issues. His third wish was to ride in a monster truck that was completely discounted. Instead we got a 10 day trip to Orlando disneyworld all expenses paid. We settled with that and had fun being VIP visitors, but learned many wishes get put into this category and their real wish never developes. We partly fulfilled Matts wish by taking him to a water park and swimming in a shark pool and doing the wave pool, but are planning that trip to Hawaii sometime after his treatment end date....

Boy of the Year campaign

A new year comes with new joy, promises, and hurdles. Matthew honored as the Leukemia Lymphoma societies Boy of the Year for Silicon Valley and Monterey chapter for fund raising. Candidates were chosen and could use the Matthew or Marrisa(the girl of the year) in their campaign to fund raise over a 10 week period. We went on a photo shoot down in Cupertino on a cold crisp day and they created a poster and some media to use in the cause. We went to a kick off party in San Jose to meet all the candidates and to strategize.. Some candidates followed through and some were all promises and no follow up...ironically the person that did win Man of the year used Matthew and the woman of the year was once Crowned Ms. America...

The candidates raised over 200k in 10 weeks and the man of the year Dustin Davies raised 49k by himself. Dustin did a makeover for Kat and Kyra, arranged a photoshoot from a pro photographer to use for media, and threw a circus maximus party, which we went to and had a wonderful time...Our friend Randy who we know through Team in training was a candidate and raised upwards of 12k in 10 weeks and used Mattie and Kat in a promotional video that turned out awesome. The video link is below and a huge thank you to flathead productions and Justin for volunteering his time and sharing his personall cancer survivor story.

http://flatheadproductions.wordpress.com/2011/04/25/boy-of-the-year-matthew-mingus/ 

Kindergarten part Deux

Our small school of some 200 students at Crestmoor where happy to hear Mattie was giving his education a second chance. Mrs. Byrne has a father with adult Leukemia and was in tune. She also had a second child in Matt's kindergarten class who had cancer and was being treated at the same hospital.  The current principal was stalling and stuttering on working on Matt's IEP, but after Mattie had graduated over the summer we were informed she was leaving due to a demotion and would have a new principal for 1st grade. Mrs. Duffner was a no nonsense teacher and was reasonable and was informed of his circumstances. Kat arranged for Matt's 504 plan and all were onboard to put an IEP(Individual Education Program) in place. Matt was having some issues in some areas and falling behind. We had a meeting with eight individuals from the district and a person from the heal program at our hospital. We went over Matt's strengths and weaknesses and put some goals in place that will take effect beginning of 2012 and run all the way up until he starts college with yearly reviews and needs. Basically, Matt gets tutors, extra time for tests, some occupation therapy for memory and other items will be addressed as they arise. The methotrexate medication he is receiving has a tendency to eliminate part of the brains outer lining and effect some gray matter which causes issues. We are very hopeful for the future and see he is taking care of...

The fragments of 2010

So a few other events happened in 2010. Matties port cathetor was removed as stated in another post and a second PICC line was installed in his arm. It eventually was removed after 5 months and we decided to just go with butterfly needle blood draws, PIV's for heavy meds, and our warrior responded so well to this change we still are bewildered by how far he had progressed. In summer 2010 we laid low, but signed up to go to a family camp called Camp Okizu up near Oroville. It was very special for our family and they work upon donations, so look them up, go to their functions, and spend money. I recommend the Lobsterfest in Burlingame, it was awesome...Below is Bear and I at camp in September 2010...

A place in Nature...

With 2010, the worst year in our lives, in the books we planned a very special trip. We had often talked about taking a trip to Yosemite national park, but never followed through. We made lodging, partly outside the park, partly inside and set off for our trip. It was a dreary rainy trek and when we got to the entrance of the park, it was lightly snowing and the clouds and fog were very low. With most of the tall grand landmarks under of veil of clouds, we roamed the village saw some of the bottom part of a couple of falls and had fun. The kids made a snowman and captured snowflakes on their tongues. The weather was getting worse so we slowly trekked out of the park seeing some coyotes, hawks, and families at play either having snowball fights or building snowmen. It was magical.

The next day we went skiing at the badger pass ski area and it was crystal clear blue skies and crisp. We had another magical day and will remember that trip for a very long time...

God I'm angry...

As I had remarked in a previous post, I was trying to point the finger at who could be responsible for such a horrible thing and at one point I went right to the top and got very angry with God. God had done this, but obviously had a plan I wasnt in tune with and how could he take my only son . I was so mad I started researching different religions like Hindu, the Koran, Judism, Shintu, but I settled with Buddhism. Funny thing is, Buddhism isnt a religion like I had thought, it is a philosophy and is very deep and interesting.
I learned about inpermanence, the eight fold path, and meditation and a new light was lit inside. I asked God for forgiveness for doubting him and was healed. I was enlightled to see the world differently and calmly.

One of the most stiking proverbial Buddhist quotes is stated as such:

The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or to anticipate troubles, but to live the present moment wisely and earnestly.

This really hit home when we attended a funeral for a nine year old boy named Amaey who lost his battle and this same message was relayed at his service. Live in the moment, enjoy every moment as it comes, then move to the next moment...This is a very very hard thing to do, but is so rewarding as you live life

Time and Laughter heals all...

As 2010 progressed and Matties fungal infection finally subsided from the fluconosol medicine he was taking, he would have some CATscans and MRI's to monitor the fungus on his organs and to monitor the toxicity on his kidneys. All seemed moving in a positive manner but there was some large globs on his spleen and kidneys. The doctors said try ad keep things as normal as possible, so we tried soccer again and he started and stammered. We dropped out and then tried Tball and the same result. Mattie was very self concious about how he ran now and it was obvious kids were asking questions. Matt is shown in his team picture wearing his Life is Good hat and tootsie pop in hand.

So we have now put him into individual sports, golf, swimming, and eventually tennis and he seems to be responding well. One of our worst years was coming to a close and we had new hopes and goals and adventures planned for the 2011 year.

Cancer Culture

After a meeting with my wife and eight other officials at Bear's school, the principal mentioned something interesting that got me thinking. He said that cancer is part of our culture in our developed nation and the more awareness and education the masses have the more leverage we as a society will have to make changes to help cure cancers. Early on in Bear's diagnoses I had two haunting questions hanging over me and they were why did someone or something do this to my son, and who is responsible. I went through a list of culprits and I was on that list, and slowly I crossed out all the offenders and realized it didnt matter why or who did this, what mattered was how are we going to cure Matt and where can we get support from societies that could help financially, spiritually and emotionally.

One of those societies is Team in training sponsored by the Leukemia Lymphoma Society (LLS)

My wife Kat ran her first marathon in 2009 in honor of a friend with cancer who lost her battle and she also always vowed and set a goal to run 26.2 miles for her 40th birthday. The kids and I hopped around the city cheering her on th whole way and were so very proud of her. What a wonderful role model for our kids. We have connected with many people through LLS that seem to have a passion and insight into cancer research and pure friendship. We are very blessed to have met and share common interest with people who have more to say than, I am sorry to hear about your son, which is the most common statement you will hear from someone who doesnt know what to say or do...

Camp Hospital

So if you ever have had the pleasure of a prolonged stay at a hospital, you have the realization that you are there to get well, but the vacuum of boredom really messes with your Zen. You can only watch so much TV or cartoons, walk the three floors of the hospital, play in the play room, or just walk the long hallways before you need a break. For us as the parents we generally would work in 48 hour shifts and it tended to work well. For Mattie, it wasnt so easy, but found if we laughed and giggled and did silly things, went to the roof garden to play darth vader vs obi one, or driving a remote control car in the bamboo laden fung shue garden, we got by. Some of the most pleasurable time was during pet therapy days, and Mattie really loved going to those and getting lost in the interaction of a boy and a dog.

CNS seizure

Towards the end of April 2010 with taking medication for his yeast fungal infection and still not doing so well, he had a CNS (central nervous system) seizure and once again we that we were going to loose our battle. He went through many tests and by mid afternoon he was back to normal. These seizures are well known with patients taking intrafecal methotrexate and oral and it is basically a build up the medication in his system that creates a toxicity and therefore a seizure. Most often it is a one time occurance, but we opted to have a pre dosing of amanophaline and a post dose when he had his interfecal poke in his spine. Amanophaline is used with asthamitics and constricts blood vessels and makes him very hyper...No more seizures since that one occurance

I'm just a Bill...

My insurance had a medical cap of 3 million dolls and withing 8 months of treatment we were edging very close to that mark. It started to put a strain on us on what avenues we could take, and strained our marriage. I was gearing up to leave my company and find something new that would have better coverage, when Mattie got feverish and neutropenic again. This was in mid March and he was hospitalized for 30 days. During that time he developed little red pestuals on his body, so they put him into an isolation room. First diagnoses was chicken pocks, which would have been very bad, one because he was neutropenic and if it was chicken pocks, he could die. Two because I had never had chicken pocks, I was banned from seeing him. Luckily it was only for 1 week, because they soon determined it was candida tropicalis( common yeast infection). Not a bad thing for most people to overcome, but it was inside his body causing huge, hard masses all over his body and sticking to everything internally. It was in his jaw, his collar bone area, his neck, his abdomen, behind his knees, and in his calves. He was in so much pain he could not walk for several months. They had to remove his Port cathetor due to the yeast sticking to it and causing complication.

The only positive thing that happened during this period was that the President Obama medical reform went through and was initiated. This meant our medical cap was removed and removed much stress.

Pill or Shot, oh the horror

Taking the oral medicine, mainly methotrexate and mercaptipurin, was a real struggle. We could wrestling with him for an hour to take some pills, dress it up with a little apple sauce or dress it down with some yogurt, it was just plain horrible. At one point we had to get trained and give him cytaribine shots at home, which was twice as horrible and stressful on the whole family. Matties first PICC line was removed after about 5 months and a Port cathetor, which looks like an over sized life saver candy with a spongy center, was placed under his skin right above his heart. That made blood draws a bit easier but usually it required a parent, the hematologist, and a nurse to draw blood. It could take 30 minutes sometimes. During this January he spent 2 weeks in the hospital and was feverish and neutropenic. A very bad combination and can be just as deadly as the leukemia itself. He was neutropenic quite often and back in the hospital for 2 weeks in February with fevers and it was the second time during our journey I thought we might loose the battle, but once again his guardian angel was there and he pulled through...

All hail the king...

So an interesting dynamic happens especially when you have more than one child, in Matt's case it was his sister Kyra that is 5 years older than him. When one has a deadly disease Grandparents, parents,cousins and strangers treated him differently. Mainly giving him "anything" he wanted. People want him to experience life in a consolidated amount of time, if his fate turns for the worst and the ramifications of that sort of treatment is he becomes a tyranical king and learns some very bad behaviors. People want to help or comfort and feel good  by giving him anything he requests helps, but it does not...Especially with his sister who is confronting cancer in the family in her own way and dealing with not as much attention and love...
In mid 2010 Mattie was stabalized and doing well and we began to put a cap on the kings tyranical reign and things have somewhat turned for the better and Kyra seems happier. She suffered terribly early on being pushed aside, not knowing what was happening and why. She was truely terrified that her whole family was going to come crashing down. We got help for her at the childrens health council and she went to Siblings camp on her own to be with others that are in her boat...

School days, School daze

Matthew had been already enrolled and ready to start kindergarten in September 2009 well before his diagnoses in mid August, so it made things a little bit tricky. Due to some complications in 2010 and long hospitalization and the influence of chemo dragging him down, his studies went on a bit of the back burner...

He tried going to the school at the hospital, but we hit many road blocks and it became apparent he would have to repeat kindergarten, but it was our decision as parents and the school would do what we wanted. We decided to keep him back and it was the best decision ever to help Mattie.

By September 2010 the teacher was onboard and Mattie was excited to go back to school with his sister Kyra who was in 6th grade. Kids at school had questions about Matt, because he looked very sick, had lost his hair, and they were not educated about cancer. The academic year went along well, and Mattie  graduated kindergarten in June with a fresh head of hair.

Doctor Who ?

So it took some effort, but we finally had got down the hierarchy of the staff at the hospital. You had your nurses, nurse practitioners, and newbie nurses. Then when it came to Oncology doctors you were assigned one main doc, who we met on the night of Matties diagnoses, then you were assigned a fellow, which Mattie always called Dr. Aimee (a fellow is a physician that undertakes a specialty training program or residency in a specific field or in our case child oncology).

Since our hospital is a learning hospital, whenever we were inpatient you would get a flood of intern and resident, poking and proding and they usually wear dark blue scrubs. Next you would find if your normal head doctor was not available for a visit you would get a visit from one of ten main doctors in the oncology group. So if your completely confused about who's who and why are they in your room, look on their hospital badge for their name, and ask politely,"what the heck you doing here?"

The Blast...

Mattie was in the PICU(intensive care unit) for about 2 weeks, so Christmas 2009 and New Years was very different than other years. They set a date to take him off of the inhaletor breathing tube because he was responding so well and his "nose hose" which is a tube that goes from an external basin for collection through his nose and down into his lungs and collected residue from the inhaled vomit. The basin was very full when he was removed from the system and after a day or two of being stable they were ready to give him his first dose of chemotherapy..
Chemo is yellow in color whether in liquid or pill form and you need to wear masks, gloves, and dispose of those materials in proper manner. After doing extensive research and drawing my own conclusions,  in the world of leukemic cancer the medicine does not descriminate between good or bad cells. It kills indiscriminitly. It is the one time in my life I would vote for descrimination...

So the doctor informs us he will get his first day of chemotherapy and it will blast away 99.9% of the leukemic cells from his body in a single swoop. The before xray above shows his PICC line through his right arm, and you will notice the little bulge on the lower right and that is his empty stomach. The after picture shows a well norished stomach, almost bulging, but you will notice  matter above the stomach on the upper right is gone, and a good portion on the left is missing. His glands in his nech subsided and were not swollen anymore and he was officially placed on remission.

This basically means he responded positive to the initial treatment and there is .1%  of the leukemic cancer left. One tenth of a percent, wow within 2 days of chemo treatment we have come so far, but I would soon find out we had about 3.5 years of treatment to go if everything went okay. So if you consider the average number of cells in a childs body Mattie's age is about 50 trillion, then the one tenth of a percent that were still cancer is some 500 billion cells...

Nil Per Os !

Learning the acronyms of the hustling and bustling hospital took some getting used to in the beginning. Doctors tend to be a little forgetful to dumb down the acronym lingo, and unless you ask questions,  generally you have their attention for a short time at about 400 bucks for 5 minutes, something will get missed in the translation even if try to figure it out yourself, ask a nurse, or even research on the internet. Get the laymans info from the docs mouth...

NPO as it is called is Latin and basically means NO food or drink 24 hours before any major procedure.So the day after his diagnoses on August 15th in the afternoon was the first time we almost lost him, because Bear was hungry and we didnt know better. It unfolded like this...

Mama Bear new her cub was hungry so went out and got one of his favorite sandwichs. Turkey and Advocado with cheese on a roll. He nearly ate 2/3 of the sandwich and was content. We were informed that in the late afternoon he would have what is called a PICC line installed in his arm for administering chemo agents. Basically, the doctor described it as putting a fishing line through a large vein(the diameter of a spaghetti) in his right bicep and ending up right in one of the four chambers of his heart. I left with Mattie to go upstairs for the procedure. Doctors said good to go and to step out, kissed Matt and said I would see him soon. Standing in the halway 20 minutes later and no word, except someone dashing out of the double doors, running to a window calling a code 87, getting a kit and rushing back in. This couldnt be for Matt?

But it was.

Code 87 means cardiac arrest. As the line was fished through his spaghetti sized vein it tickled his heart in such a way to make him vomit his lunch. He then inhaled alot of the vomit and went into arrest. He was revived, but they had to put him in an induced coma, inhalated him(tube down throat), and put a cathetar in so he could pee. I was there the next 36 hours with no sleep doing research, talking to nurses, getting to know the lay of the hospital, and doing a lot of praying to send a guardian angel for my son.

Poe, a real friend

Christmas 2009 was different. We spent it at my cousin Dan's house and had a good time. The kids always ask if cousin Renee is going to come, because they say she always gives the best and most meaningful gifts.

This year did not disappoint and she gave Mattie a stuffed Ugly Doll. It was a green bat and we soon discovered that Poe, as he would be named, would be unseperable from Mattie especially on hospital visits. Poe has undergone chemotherapy, MRI's, CATscans, blood draws, surgeries, and when Mattie lost his hair Poe lost some hair too. Everyone at the hospital knows Mattie as the boy with the bat named Poe. The Ugly Doll company discontinued the bat, so we are very careful to know where Poe is. It is almost like a second son that I have that I never have to discipline...

P.T.S.D and me

My wife knew I had a fear of hospitals, doctors, and long hallways and I knew there would be a big hurdle that I would have to jump, and quickly to overcome this fear/phobia as I called it at the time. So, when I was eleven years old I was in a serious bicycle accident and broke my right femur in one place, but way at the end near my hip. I was transported in an ambulance to SF general, went into surgery to have a pin put in my leg and put into tractions. Bad news was my Mom, who was a single mom was not aware of the accident for many hours. I can remember feeling all alone, lost, worried, and scared. My mom arrived at the hospital and was somewhat comforting, but very mad a me. We were informed I would be in tractions for 3 months and then a cast over 35 percent of my body for another 2-3 months and then months of physical therapy. I spent many nights and days all by myself and seemed like I had very little visitors than I actually had, because I missed home so much. This trauma was warping my psyche and created this fear/phobia of hospitals that would last about 30 years. I was sitting in my sons room watching him sleep and this guy pops in and introduced himself as Jake. Jake is a social worker at the hospital and he was there to explain and show Bear with some props what this disease was, what to expect, and to quell his stress. Right at that moment I realized that I had suffered for many years with post traumatic stess disorder. I felt a gorilla literally jump off of me and I felt so much more courage and determination to work with the people at the hospital in any way I could. Jake has been a great asset during our journey and Mattie likes him alot. Especially when he gets hot wheels, or gets to go to a special event...

Sharing the News...

Kat and I shared the dreadful news with our mom's and cried for what seemed like an eternity. We shared the news with close friends and some were responsive, some could only say they were sorry, and others responded with," I guess I cant stress about our problems, knowing what you now have to take on." I told my work and my boss was very supportive and still is. He leaked the news to some of my co-workers and I had to tackle the questions, and hear the works unfold from my lips that my son, yes my son has cancer. A cancer which I did not know how to spell, or what it was doing to my son, but I would find out by doing alot of reading, learning, and a new kind of cargiving. Now that I look back on sharing the news, the people that could truely support us and really understand where families that had kids with cancer, and were already in the machine, working towards a cure...

Onset of "cold"

In May Mattie had just turned five years old and he had contracted a pretty bad could. We let it try and run its course for the next 2 weeks, but the congestion, flem, and coughing just wasnt breaking and the poor guy was in misery. We waited another week and still not getting better. He went in to see his pediatrician and she recommended antibiotics. He took the antibiotics and this was in early July. He was also having some difficulty breathing while sleeping, and it appeared at times that he would actually stop breathing. We went to our annual family reunion to the Stanislaus county fair and by that time we noticed his lymph glands on the sides of neck were swollen. When we got home we talked again to his pediatrician and she told us to go to the hospital to get an MRI. We went out for sushi dinner beforehand, and then had the MRI done. The doctor who did the MRI didnt give us any results, but I can remember when leaving the doctor actually walked with me to the exit of the hospital just making small talk about his family and kids. At the time I thought it very strange, and when I shook his hand to say goodbye, he said take care of your boy, and good luck. I had never heard of a doctor wishing somebody luck, but we soon learned from a call that my wife took that Mattie probably had some form of cancer, and to head to Stanford emergency room for immediate treatment. That is the night we met Dr. Gary Dahl and got the heartbreaking reality. Mattie had cancer, but had an 80 percent chance of being cured. Wasnt feeling very lucky at all...

Why blog now

Bear has been in treatment at Lucille Packards Childrens Hospital for 2.5 years and it has been very rocky, stressful, and emotionally draining for all of us. Right now he has been stable and doing very well and at the start of the new year 2012 he is creeping towards his end of treatment date 12/12/2012. Then 5 years after that in 2017 he will officially be cured. Then the lifelong healing begins for all of us and I thought for this Christmas I would begin assembling this Blog and reveal it to everyone Christmas morning. We have 2.5 years of triumphs, tradgedies, and turmoil to back Blog to get up to real time blog dates but I am up for the challenge and believe by compiling this will be very theraputic.

Life before diagnoses

Matthew's life before diagnoses was fairly ordinary. He was always jumping around and very energetic. He was walking and talking just about the time any ordinary child would. He played soccer and played with his cousin Danielle at his grandmothers house during the week and was very close to his sister who is five years older than him. He was not a sickly child, but did have colds, flu, and ordinary bumps and bruises any child would have. He was a very happy, giggle prone, and sometimes serious kid. He enjoyed snuggling with his mom often and that's how he got his nickname, Bear...