Saturday, October 11, 2014

Hope and Gifts of Kindess

Time for a little, or a lot of updating.  It's past time, overdue and as usual I had good intentions for writing a post much sooner.  There are many reasons I procrastinate writing updates on the blog, the biggest one being that there are always changes and plan deviations with treatment and most of the time I am waiting for the right moment to tell the "good news".  I'm going to be honest, the good news is slow to come this time. Not that there hasn't been good things and good times, but the news of good progress and good options is still not exactly where we had hoped.

We were able to go to San Francisco in September to meet with a physician there.  The purpose of the visit with him was to get into better position and eligibility for a clinical trial and to hear about some alternate trial options that we might pursue. The reason for considering clinical trials is because as mentioned before, there are not a lot of good, successful options waiting around for us to try.  The best one's out there we have already given to Owen.  Clinical trials offer hopeful options but carry risks, and that is something we consider as we look into them.  While in San Francisco for our day visit we were able to drive around the city.  We saw the Bay Bridge. We were amazed by residential streets and architecture and we visited the Ghiridelli Square and sampled a little chocolate.  Owen probably only enjoyed these things about 1/2 as much as we'd hoped just because he was experiencing a lot of hip pain.
The Bay Bridge in the fog
 He could only walk short distances.  I carried him. Dad carried him.  It was actually pretty cold and the fog prevented us from truly enjoying the bridge because of a misty rain that pursued most of the day. Owen was not feeling too awesome after flying and before his appointment he was a different boy than the one that was excited to take an adventure to the doctors office for once.  A little medicine helped and the appointment went quite well. We were impressed by the care and interest  the doctor showed in Owen's case.  It's great to have understanding and involved caregivers. We discussed options, talked about his current situation and received a few papers to look over, consider timing, trial benefits and risks and research. Ultimately we left San Francisco with a little hope, more driven for a spot in a very coveted clinical trial, and felt like we had added to the small army of people fighting for Owen's sake. Needless to say, the spots have opened up for the trial a few time since then and we were still unable to get in. It's simply.....unlucky.

A small sample of Owen's art....he has some abstract stuff going on!
Owen is doing good.  He has been a little less energetic and not quite his smiling self over the past month, but he is a very strong and brave boy. Even strong and brave people have a hard time smiling sometimes. However, he is amazingly motivated.  He goes to school (still with the agreement that a parent sit outside of the classroom all day) unless he has appointments .  That fact that he has energy and drive to be in class every day is a true miracle.  He has undergone doses of radiation for tumor growth and pain in both his hip and back over the last 4 weeks. It was 5 days for his hip and 5 days for his back. Radiation side effects can make him very tired and can actually cause pain before it relieves pain. Still, he wakes up ready to go. I wake up hoping he'll want to stay home for a nap so that I can have one too. He finishes all of his homework with accuracy and speed and even goes above and beyond doing other work he missed. His motivation to finish his work and desire for accuracy is amazing. He's even started doing some art on his own.  He has plans to sell it. It's pretty cool and such a great way for him to express himself.
Working on his art cards.

His sleeping has been very sporadic due to some severe leg and back pain and insomnia from medications.  When he's not sleeping, I'm not sleeping. The whole family feels it, even though it's mostly Owen and I that have long hours dealing with stuff in the night. I hear this comment all the time from people, and I think this same thing to myself. "He has every excuse to feel too tired, too sick, uncomfortable and unmotivated to spend so much effort on school" but he uses no excuse and has a stronger drive and motivation and most kids there. I think that it's a blessing and it's his one way of feeling like an eight year old doing eight year old things.  It's pretty unconventional to sit with him and spend our days at the school, but cancer is pretty unconventional and it makes for a pretty unconventional family life as well. We want to give him every opportunity to do something he CAN do, because the reality is there are lot of things he CAN'T do.

Owen has been given happy moments and days through the generosity of others who give of their time and they want for him to find happiness.  He was given the chance to be the "Thursdays Hero" at BYU with the football program.  Of course there are perks and one of them is getting to meet people you might not normally have the opportunity to.  He was also able to watch an RSL practice and meet the players. People do good things to find ways to cheer him up, make him feel special and give him things to look forward to.  It is amazing that after 17 months of cancer treatment the charity never stops. People always want to help. I've said it before, but one thing I have learned is that people truly are GOOD!
Real Salt Lake
Players signed his shirt

A one-on-one meeting with Bronco. The guy in charge of the program said this was unusual and something he hasn't seen Bronco do quite like this before. Owen is getting the special treatment for a special kid.
Cheering out the team


Lucky to get a jersey of his own. 
There are some pretty exciting things on the horizon for Owen.  It was granted this past May that he get a wish from Make A Wish Foundation.  He was formally granted his wish and plans were set in place for him to go on his dream vacation.  He chose to go on a Disney Cruise with the family and that is now arranged for the near future. It is something that he has been so patient to receive because he waited the whole summer before the opportunity was made available.  A representative from Make A Wish came and gave him a true-life treasure hunt and announced his wish with the support of his 3rd grade class.  That day he was able to smile a quite a bit. He looks forward to experiencing every detail of the ship which he has fully studied. He has planned and watched many, many other families (all strangers of course) Youtube video vacation's aboard Disney Cruise lines. We pray and ask for prayers that he will be physically well and able to enjoy this gift as it is truly a dream of his.

What's next for Owen is the biggest question.  It's a question without a lot of sure answers. Miracles do happen.  He may get into a study, he may have strength to fight and win his cancer in ways that have not been presented and maybe one of the options that we have been mulling over will turn out to be the right one.  He has our love and attention beyond what he can comprehend.  It takes an army of people to get through this trial and we are so lucky to have been surrounded by so many of our good friends, family and strangers. Our other kids have been patient and mature people as they see us fight for Owen. It takes everyone, it takes time and it takes energy that isn't really there sometimes. Small round blue cell tumor is an aggressive cancer as we have found. It has been a real educational experience to search, study and ponder which things are medically "right" for Owen.  It is also frustrating, tiring and humbling as we try to understand this life.  It has taught that we must always trust in the Lord and find faith even when we most want to let go and give up.  I might be speaking for myself, but I think our family is finding great comfort in the closeness and time we enjoy with each other. There is a lot to be thankful for and finding something to be grateful for each day is what keeps us going.

Tuesday, August 26, 2014

Owen's Street, Literally!

It's easy to feel like there is too much information to share so I get overwhelmed and I don't share.  Then I feel like it means so much more to us to have so many people on our side thinking about, praying for and supporting us that I know that I should update the blog and share Owen's journey.  It is a journey that is constantly changing and the only sure thing is change.
Amazing geometric fish art hanging in the school hall, by Owen.
There are some things that haven't changed. The wait is still on to try and get an acceptance into a specific clinical trial. It is ongoing and openings are random as is being accepted into the study. It really has been tough to wait each month to hear whether there was a chance he could get in, then the chances came and went and that was just DUMB.  I don't have a good explanation of how the randomness of the study candidates are chosen other than to say I know that any parent in our position thinks their child needs it the most and every parent is right.  The problem is there is not really a first in line, top of the list sequence.  It is literally like I stated in my last post. It's a matter of clicking the mouse first and then passing all the criteria exams to be qualify as "a go". So far, not "a go".

Owen had his second round of this new Chemo. That is the best we have right now.  It wasn't our favorite week of side effects after, but we also didn't know that we weren't really facing just side effects....in addition he had C-diff (if you have had a hospital bound or immunocompromised family member you know this term, if not the Internet will tell you more).  He was so sick.
A common scene in the back seat of the car.  We keep plenty of pillows and blankets for a comfortable ride for him.
 The problem was the the side effects of chemo are similar, but not nearly as severe, to the C-Diff.  Let's just say it was a lot of time in a bathroom, very little eating, and stomach pain to level 10. I was unable to accept one more day of watching him be so uncomfortable so off to the clinic we went and after tests, fluids and correct meds to clear his infection, he perked up nicely.  I felt better because he felt better.  Our family actually had some time together because he could be out of bed and out of the house.  That is always so refreshing.

Just before the scan began.  He is amazingly patient and can handle lying still for a long time.
Early in August Owen had a PET scan which we miraculously made it through.  After days of Owen not being able to eat, drink or stay out of the bathroom I was amazed that he could drink the yummy :/ contrast juice and lay in a machine for 40 mins for images. He is a champ. Imaging time to check for cancer growth can be a nightmare, anxiety overload. Waiting for specialists to review and report is cause for a major gut ache.  We all try to anticipate positively, even though nobody at home really says much.  The morning after the scan we got a phone call from our oncologist.  The bump that we had noticed on Owen's leg was cancer as suspected.  The rest of the news was just a jumbled mess of other areas of concern and confirmation of very small but positive growth on his spine, lungs and liver.   Boo!  Needless to say that was a rough morning for me and my husband and eventually for my kids as we shared the news.  However, the tumor in his brain was nearly gone.  This cancer comes, goes and moves around.  I think I asked the unanswerable, WHY at least a hundred times that day?  In the past weeks, as parents, we have spent hours and hours of time doing our own research.  What else is out there?  What are the options?  Do we know what's best for him and for the cancer?  These questions have to be asked and have to be pondered.  We have 3 other kids and if you count all of the great things they are doing, the time we spend supporting them and all of the normal life stuff, it's a lot.  Add in a head full of thoughts, fears, decisions, and emotion of where and what the future is for Owen.  I'm not sure how we do it all.  I have been feeling a lot like I did in the beginning, wanting to push all life aside and not just focus on Owen's care, but forget everything else. It's unrealistic to think that dropping everything would make him better, but I wish it would work.  We give him all we have, and try and pray to give all  the rest to each other and our other kids as well. I don't know if we are doing very good at it, but we try.

While driving home from work, I was thinking (that is what a commute is good for). Life has so many parts, pieces, days, possibilities, and varieties.  Life goes on all around us.  In reality we only touch on a tiny part of the vast amount of possible scenarios our lives could take on.  In my mind I knew and I felt like there were millions of people who had no idea of my scenario. So many whose lives would never touch into a situation similar to mine or have understanding of how it is to live with a sick child. And likewise I would never fully understand other's scenarios of life.  It made me think. I didn't really have a moral of the story or an AH HA moment quote that came out of the thought. Mostly I just find myself amazed to know how big this world really is and how small we ultimately are as part the big picture.  I am grateful that I have an understanding of why I'm here, where I'm going and what forever means to me.  Not having a purpose in this world would be awful.  I'm grateful everyday for an understanding of the gospel, families and individual worth.  I expect that driving alone in the car will bring many more thoughts, and hopefully help me make the best decisions for myself and my family.
Speaking of decisions, we have decided to expand our research of options for Owen.  Partly by chance and with the help of friends, doctors and our own ideas we have been able to have doctors from CA looking into Owen's case.  It has been our hope to have (though obviously not yet happened) CHOC, a hospital in California accept Owen into the clinical trial, so they have been working closely with our doctors.  Now we have been contacted by a children's hospital in San Francisco who also reached out to offer help with possible treatment options and other ideas. Check the map for the name of the street the hospital clinic is on....We'll take it as a stroke of good luck!
 Details are still in the works and it is our hope that we can visit them in the next week to discuss more.  I have confidence another set of eyes and opinions is not going to hurt. We have so much faith in our Dr here at Primary Children's Hospital.  We are so grateful to her for her time and willingness to help us expand our options.  I don't know how those amazing doctors and nurses manage their emotions and relationships with all the kids.  It has got to take a special personality to give so much in an area of expertise that is so confusing and unpredictable.  We are looking forward to our visit to San Fran and feeling somewhat hopeful.

Despite some discomfort of his hip, feeling tired and overwhelmed at times, Owen has been able to be in school.  Of course it's only the start of the school year, but already way better attendance than last year.
1st day of school picture.

Already filling the halls with artwork and writing. 
 He doesn't feel comfortable there alone, so we are doing our best to be at the school and work, accomplish tasks, and attend third grade with him.  We want him to go and to feel like he's doing 8 year old, third grader things.  It has been great to see him enjoy it.  It's unpredictable how his days will be so giving him an opportunity to go when he can is important.  The school has been great and accommodated to our setting up office outside the classroom.  They have offered cushioned office chairs as a perk. It has given me time to sit here and post on the blog.  It all works out. We live our days in the scenario we are given, and today I'm grateful for the chance to sit outside of the 3rd grade classroom and realize that ALL of my kids are able to be at school.  That means it's a good day! :)

Friday, August 1, 2014

Clinical Trial Trials

Just a short post to share the information about the clinical trial I spoke of in the last post.  The information we got was that spots (we were unclear as to how many) for the trial would open up on Monday.  Those spots did open and it seems that they were few, as few as three.  We also learned that Owen was not able to get in to the trial this time around.  It turns out that even with doctors who belong to an organization which is involved in advocating for children with cancer and treatment study the way that the acceptance works is by a click of the computer.  The spots are opened and lucky first clicks on the computer get in.  It's kind of like trying to get into a course you need in high school or college, where you are fighting for 50-100 spots in a class and if you click fast enough, you get in.  Only for Owen, it means a lot more and is a matter of likely more successful treatment vs. continuing what we know has been used in the past.

So it means that we must move forward. We have started another round of chemo.  We will hope and pray that clinical opens up again soon and that the world of cancer study and treatment will continue to unfold great options.  For now we will do all we can to have faith that he can maintain his health and pray that the chemo will do as much good for him as it did in the past.

A quick visit to the zoo before chemotherapy side effects kick in.  Fatigue (pretty severe) and stomach disrupt have been the culprits with this type of therapy.....NOT TOO BAD TODAY, THOUGH!
In addition to being grateful for the hard work of the doctors in Owen's behalf, we also want to express thanks for the hard work and preparation for a fundraiser going on tomorrow. All who have participated should know how much it means to us. It's incredible to have such continued support.  Information is on the  Caring for Owen fb page.

Sunday, July 27, 2014

Super Summer 2014

From swimming, to soccer tournaments, to a sleep study and much more, Owen has been busy as has the family.  Our summer is more typical this year, not completely normal, but much more summer-like than last year.  The fact that Owen has been able to receive his chemotherapy out-patient (for the most part) has allowed the family to be together and do more together.  Last year we spent so much time apart due to required admit to the hospital for treatment and other complications. I wish I could say Owen feels fabulous compared to last year at this time, but I definitely think the side effects are more manageable this time around.  He is doing well.
One of the swimming days when we got 3 kids in the pool at the same time

So, an update since the post in May goes something like this:
We had 27 radiation appointments at Huntsman to deliver shrinking radiation doses to Owen's brain tumor, a small tumor in his left hip and also some irregular cancer activity in the heads of both his femurs. Those appointments finished approximately the end of the first week of June.  During that time he took an oral chemo that was mostly just fatiguing and caused some nausea. The chemo mixed with the radiation was especially fatiguing and Owen was able to do a little activity in between naps. He did quite well considering the treatment duration. Lucky for him he has MANY friends at Huntsman so it was nice to see their friendly faces each day.  He lost his hair, again.  That was due to the brain radiation and it was rather interesting how precise the target beam was because he kept a funny line of hair at the bottom of his neck that was exactly straight across.  I should have taken a picture.  We call it his mullet. During the radiation we consulted with many doctors and those we trust who have also been very helpful and supportive in our fight.  Many colleagues of our doctors and radiology specialists met and at the tumor board discovered that Owen may be best treated through a clinical trial that is taking place at a few locations across the country. As we researched further into the possibility of being accepted into the study (based on cancer type, areas of occurrence, Dr's recommendations, sites available doing the study, affects and outcomes) we felt like it was his best hope as well. Since then we have been working closely with our Dr to prepare and we are crossing our fingers that the acceptance into the study will come and that timing will be right for him to begin.  The hardest part of the study will be to arrange traveling and accommodations to the study site for treatment.  There is not a location in the state.  There are several locations across the country however, and most conveniently in CA.  Until we get accepted we really don't have a way to determine what the demands of travel will be and how we can make it possible.  We just know we will do it somehow and with whatever means we have or can get. The most recent news is that we should hear something for this round, MONDAY MORNING - TOMORROW! We have prayed and so many others have prayed that Owen will be able to take part in the study. Thank you for your support. We have faith that if it is the right thing, it will happen.


Luckily, after the radiation treatment we were given a couple of weeks of treatment free, appointment free time that we could spend time as a family doing some summer things.  We even took a little trip to Carlsbad, CA, which is a place we love so much.  We had generous friends and acquaintances who were able to share some connections they had to help us take our family and more importantly, Owen, to Legoland and to help us with a great near beach location for a week.  We loved our last minute trip and I have to admit I didn't realize how bad I needed it until we were there. We spent our time doing whatever, whenever and however we felt which is truly the definition of a "vacation" in my opinion.  No big plans, no have to be somewhere or meet someone and meal times and wake up/sleep times were not in accordance with the clock.  Now that's a vacation dream. Life for the past year or so has been nothing like that, and not that any family gets vacation time often, but it was void of anything medical and especially sickness or inability to go.  WOW!

The Lego cars were his favorite
The Carlsbad Seapointe Resort was a fantastic place to chill and play
We have been able to take Owen swimming which was off the table last year due to his central line.  He does not have one right now and hopefully won't have to.  We will see if the study or treatment plan changes but we are hopeful he gets to avoid that for now. We've been able to swim at our family friend's home who have been so generous with their pool.  This is great considering we are avoiding all the germs and crowds at a public pool. Our other kids have kept the family busy with their soccer schedules and summer activities, but the best part is we could all go to the games together.  Owen probably knows more about soccer than most kids who play soccer at his age simply because he has watched so many soccer games.  Not to mention the World Cup that was so conveniently going on during our trip. He doesn't love that he's not strong enough or agile enough to play for himself, but he's a great fan for his siblings.

Owen had a sleep study done last week.  Those are not fun.  The sleeping test part is fine.  Keeping a kid awake with only 4 hours of sleep prior is torture for the parent and the kid.  The rules were that he could sleep the night before, but for only 4 hours.  We chose his 4 hour block to be from 2-6 am.  We stay up late usually and it seemed easier to extend that than any other times. It was rough.  Not only was it hard to stay awake til 2, it was even more difficult to stay away and stay busy from 6 am to his appointment time at 1pm. Ouch, foggy brain, OUCH! We pretty much did it.  I let Owen sleep in the car for about 15 minutes on the way to Primary for the study because I felt so bad for him. I watched his head bob over and over again in the back seat. It was painful. Good news after the study is that they saw no seizure activity and were able to lower his medications.  It is a slow process to ween meds of that nature, but it will be great if we can get him off of them to help with his energy level.  He will still take chemotherapy orally in intervals if the study doesn't come through this round, but for the most part he is taking very little to manage symptoms and we are still using essential oils in addition (topically).  They are helpful for sure.
One of the tournaments with his sister! 2 championships in our family so far this summer!

It has been a whirlwind of a spring and summer with the unknown future of treatment and outcome.  We have done this before. We can and are doing it again.  I'm usually in good spirits about how things are going but occasionally I feel like there is just no way this can be happening.  Owen is typically more than positive and as resilient as ever.  It has been hard to consider school, fall plans and all else that is coming up simply because we don't know how or what Owen's health will be.  Those times are frustrating for me. For today, we just try to take advantage of the health and happiness he has.  He is still hoping and planning for the Make-A-Wish Disney Cruise that they were unable to grant him during the spring or summer due to availability and timing. It is set for the fall. We hope and pray that he stays strong during whatever treatment plan we undertake just so he can be healthy enough to go. It is still his main wish.  For now we will just continue to enjoy summer.  Hopefully the news about the study on Monday will give us a new focus and anticipation of what's next.  Please keep him in your prayers. Thanks to all for your support.



Saturday, May 31, 2014

Tough Kid and Take 2

Writing a new post is not difficult to do.  It's not even too time consuming if I just sit down and do it.  The difficult part is the content of this particular post.  I have been struggling to find words to share the latest with our HERO Owen. I may have put off blogging because there was a part of me that feels like this period of time is blurry, unreal and confusing. I have been taking time to just absorb reality and move in to the next step. I think I can share now....I'm going to try.

If  you are friend or family you may have already heard the news that cancer has reoccurred.  Remission was short.  Too short.  I guess that's what happens sometimes.  Owen was growing enough hair that we could have almost cut it.  He was active and much more healthy than he had been. We suspected nothing was going wrong or headed in that direction. Cancer is sneaky.  School was going well and Owen had begun physical therapy.  Our summer was within reach and we were all ready to take it on.  We still are, but it will be much different than anticipated.
Healthy just days before the tumor was diagnosed.
 On May 9th Owen was at a sibling's soccer game with me.  We watched, we played catch with a mini soccer ball and we planned a night of fun afterwards.  There was a moment where Owen mentioned some tingling in his right foot. His left foot and side had done this before and it was brief. Dr's advised that it was likely side effects of his prior surgery and chemo treatment.  I was not concerned as this new episode was a lot the same as before and should go away.  After 15 minutes it only got worse and after walking with Owen to a bathroom I was very aware that his right side was weak and uncoordinated.  He knew that too and was visibly scared. After discussion with Oncology at the hospital I decided that I felt strongly that I should take him to the ER. It was progressed enough by the time we got in the car that he could not lift his right arm or leg.  I suspected a stroke (which would be rare) and ER checked him for stroke symptoms as well.  It was found that he didn't have other stroke symptoms so it was on to the next checklist and planning of tests.  I was aware from previous discussions that cancer regrowth in his back could cause this, but I felt it would be too soon to have enough growth to cause the problem.  I denied the idea. As the hour progressed in the exam room, an MRI was ordered and preparations were being made. Then the next symptom started.  Owen could  not talk.  He was trying and I could see in his eyes he was trying.  It was scaring me and my instincts kicked in to be crazy "get someone in here NOW" mom.  I was feeling that now we were on to something even more serious. I wondered if this was in fact a stroke. They got more doctors, more nurses and more people.  They moved him into another room and started ordering more tests and more meds.  It was 10 mins and he still didn't talk and he looked more blank.  It was when his arm started pulsing that I knew he was having a seizure. Things progressed and doctors from many departments were all gathered and before I knew it (well, I knew what they were doing) Owen was intubated, had 2 IV's and was sedated to allow for an MRI and to calm the seizure. Did I mention that Dan, my husband, was out of town at the time?  I was sort of feeling alone. I called a sister and she and her husband came to be with me.

Time seemed to tick by slowly while I waited for answers.  I had support and company to keep my mind busy, but all I really did was think about the possibilities.  Finally at approximately 2 am a neurologist delivered the news.  I felt like I was being sucked into an UN-reality show.  I was hearing news I felt I could never hear again, nor did I want to.  There was a tumor in Owen's left side of brain.  Details were foggy, but it was big enough to definitely be the source of all of his symptoms and would unlikely be anything else but re-occurrence of his cancer.  I was devastated. I felt for Owen and I thought of all of his excitement for his upcoming summer.  He missed a lot of being a kid last summer and here we were again.  May 10th, 2am and we were hearing the initial report. Of course we wanted more details, but they would have to wait until they had more time to look and to talk to other doctors. Then it occurred to me.  The date, May 10th, was the same exact day we heard last year in 2013 that our boy had cancer.  This truly was UN-reality.  Once I got hold of my husband to give him the status and the news, I hung up the phone and tried again to get in touch of what was happening. We had discussed ways for him to get home quickly, but if there was a quick way it wasn't quick enough. It was almost 48 hours before he got there to see Owen, and I was probably unrecognizable at that point with barely any sleep and inability to eat. It was a blessing to for Owen to see dad and for me to have my other support and strength in decision making.

Minutes after Owen's intubation tube was removed and he was
dreaming about Chick-fil-A
Tests were performed, medications were adjusted and within a couple of days we were able to have an alert, but tired Owen. He was improving by Monday morning.  There were some lingering symptoms and pending decisions on how to treat them. The bigger decision was how to treat the tumor. It is inoperable. We knew we needed to do something and with advice from doctors and specialists who we trust, we were able to move forward with radiation therapy first. Bone marrow biopsy was done: negative for cancer cells. Spinal fluid was tested: negative for cancer cells. However, while testing, scanning and planning for treatment there was discovery of a second small tumor.  It was about 2cm on the pelvis. We are all a little confused at this strange, still mysterious, small round blue cell tumor cancer.  Many medical professionals are involved in research to help better understand the cancer and the best treatment plan.  Brain tumors usually respond well to radiation and we needed to move forward with a plan.  We started right away, and will now include a short round of radiation to shrink the already small pelvis lesion.  We are now about half way done with the radiation dosing and seizure and neurological side effects from the pressure of the tumor have nearly diminished.  Fatigue, hunger (from steroids) and a case of the chubby cheeks have set in.  Owen is amazing. He has been very compliant with procedures. He is brave and consistent in doing what we can to get this crazy cancer into remission...again.  He has shown moments of disappointment knowing he is missing parts of his summer, losing his hair, and feeling less than healthy.  I don't blame him.  I have felt those feelings with him, along with so many more.  He has great support and his siblings sure have given a great amount of love to him during this difficult time.  They are pretty amazing, too.
Getting hooked up to the EEG machine for observation and
confirmation of type of seizure activity

Sporting the "Olaf" hat during his testing overnight.
The range of emotions is wide each day.  We feel gratitude for so many people who truly care so much. Disappointment that cancer has it's own way.  Sadness that our amazing Owen has been inflicted with the disease.  I would be lying if I said I haven't felt Angry, because there are moments that I don't know who or what to be angry at, but I feel it.  Scared is a great word to describ being in the decision making position and for Owen when he has to face procedures and tests. Most of all we are OPTIMISTIC.   We are doing our best to stay positive and to recognize and hope for miracles. There are so many uplifting  and positive stories of brave kids, men and women who fight and battle successfully during cancer treatment.  We pray and make efforts to seek guidance from doctors, professionals and the spirit which we know helps us make better decisions and can give Owen a chance at remission. We know that there is no cure for cancer, but our chances of Owen getting better are still within reach.  Keep him in your prayers. He is such a kind, patient and strong boy and has so many friends, old and young.  We know he is loved.
Feeling so much better and ready to come home
Cool but restrictive face mask to help stabilize his head during radiaton.

After radiation in mid-June, we will meet and plan for additional treatment, most likely another type of chemotherapy. For now, we will take whatever good, energetic days that Owen has and summer will go on in a special way in 2014.
We've been able to attend the pinewood derby since his diagnosis.
Hooray for strength and improvement.

Also, a kind friend donated some REAL Salt Lake tickets and Owen and Dan
were able to attend. 


Monday, April 14, 2014

April Announcements

It's April.  I am amazed at the amount of time that has passed and how life is continuing to change and carry on post treatment.  It is definitely a part of time I am happy to be in, but it is also a strange and "new" part of living in cancer remission.  Owen is doing GREAT!  By great I don't mean that life has resumed as it was or that it is like he never had ailments.  He is however great in terms of how far he's come and how well he seems to be healing and recovering.  Emotionally, there has been some adjusting for everybody.  It's hard to find a way to resume with daily things, with life and normalcy when you've just spent 10 months learning to protect, stand guard and handle a sick child. Not to mention the rest of the family on the side. February 6th was his last hospital discharge date and since then for the most part it has been a time of healing and moving on.

Owen has been to school, not regularly, but going as well as he can for now.  He made it to primary for the first time today, since last April. He said he loved it, he missed it and now he feels like he's a part of it again. It's good to see him enjoy things again. He was able to get his broviac central line out about 3 weeks ago.  That was just in time to go to a soccer tournament in Las Vegas where it was warm enough to swim.  Waiting to get the central line out was quite a wait.  Blood counts are important in recovery from chemotherapy and just in general.  Dr's wanted (and so did we) Owen's body to be able to fight infections, not require IV medications or transfusions before his line came out just to avoid unnecessary IV insertions and needle sticks. It took his body a long time to recover so Owen became very anxious and by the time the actual day, came he was more than ready to have it gone.  He had a mental picture in his head that once that silly line was gone he would finally....."be just like a normal kid".
The line is out.  It was a quick procedure, sedation required, but recovery was fast.
 He felt so great about it that on his way home from the hospital he was already thinking of all the things he/we had avoided during the time.  Immediately he was ready to plan the next long awaited event.


We could not get enough swimming time to please Owen.   He had not even touched a toe into a pool at all last summer.  He was really more excited to get into the water than anything.  He swam and played so much that he wore the skin right of the bottom of his feet and we had to doctor them up. Luckily there was a nice pool where we stayed and with all of his sisters teammates who adore him he was able to swim and play without a lot of crazy other kids.  Most things we do now require some easing into and that was the way it was but for only a short time in the pool.

It seems like one of the things that is hardest in life is waiting for that next thing to happen. Knowing that change will make life easier and as humans we wait for a positive change that we know is coming. In reality it's better to live in the moment and enjoy things as they are. It's best to recognize blessings and see the brighter side of things.  Easier said than done though, right?  I have been thinking heavily on how to live more "in the moment" and though I am making an effort, I have a lot of work to do. Owen is better at doing that than me and he is also very patient. Moving forward with life after cancer treatment and knowing the statistics and possibility of cancer returning in the future make it a little harder for me to relax and live in the moment. I'm still guarding, anticipating and thinking ahead.  I have to stop.  I have much to be grateful for and want to be a better example of enjoying where we've come and from where we came in this situation and in life.

After all, being patient has it's rewards.  It's not the most important thing to have hair....but it's rewarding to grow hair again after not having it for a while.
At about exactly week 6 post chemo this was happening!!  HAIR

Owen and his fantastic snowboarding teacher.
Making some moves on the hill.

Being patient allowed Owen to heal and become strong enough to have snowboard lessons that were donated to him through an organization "Team Mason Foundation" and Canyons ski resort.  He made it to the resort once before finishing treatment and again just this week.  He is looking forward to continuing future opportunities to fine tune his skills and learn some tricks.

Coming up this month is a great milestone in Owen's life.  He is going to be baptized a member of the Church of Jesus Christ of Latter Day Saints.  At the time of his birthday he was not in a position which was comfortable for him and doctor's felt better about us waiting to do the ordinance when he was free from a central line.  He is very excited and has looked forward to his baptism for months now.  He also has the opportunity during the summer to go to a special camp just for cancer patients and their siblings.  We heard a lot about these camps during the summer last year, but he was much to fragile to attend. We are so grateful and excited for the volunteers who make it possible for them to mingle and enjoy the company of others in the same situation.

I wish for a rule.  The rule is: If you've been sick to a certain degree or for a long period of time, immunity tto all other ailments is granted.  That sounds like a lot to ask, I know. Some people are sick there entire life and I know that too. It's just difficult to watch someone suffer and be unhealthy. Because we live life it's not possible to have perfect health all the time but it just seems wrong that already Owen had a run in with pneumonia. Last week started out with sniffles, which turned into a lot of congestion. Almost like a light switch he developed a cough that was non-stop and was uncontrollable.  I had used my doTerra oils which previously worked great, but I could tell whatever he had was becoming medically concerning.  The next day's chest  xray confirmed pneumonia.  Not extreme, but enough that with his history and discomfort he was treated with some antibiotics, nebulizer and of course rest and fluids. It didn't take long for him to perk up, but my mind immediately went into protection and sanitization mode.  I am just so used to doing all of that and getting sick was something we avoided so well during treatment. 
Doing what it takes to get better.  He's always such a trooper.

I'm so lucky to have such great kids. I have watched Owen's brothers and sisters care for him through much of the last year.  They deserve a pat on the back as much as he does.  He's been an important part of their lives as much as they would like to have focused on their friends, social lives, and themselves as most kids do...they give a lot of time and attention to him.  As parents Dan and I have prayed to know how to help each of them feel important and hoped that we would have enough time and attention for their normal, busy, healthy lives.  I must say that it hasn't been easy, but they always seem to understand and they share their time with us by helping and giving support and care of their littlest brother.  What a blessing.  Each of them deserve a high-five.


Friday, March 7, 2014

Turning the Page

The timing is off on this post.  I should have written days ago, but it wasn't the right time.  I have had to take time to internalize some of the events and successes of the last month.  It isn't something I'm capable of fully explaining, how I feel, or what my emotions and the emotions of the family have been.  I'll do my best and I'm thinking that in the process there will be an element of therapy....I hope.

First off, the news (if you've already heard) that Owen is "cancer free" or in "remission" is true.  It is great news and very rewarding after all he has been through.  It is something we have wanted to hear and experience and have anticipated for a very long time.  It is worthy of exclamation....
Yay, Yahoo, Hooray and Thank Heavens ! 
What a blessing. 
Time to ride a bike !!!
In terms of how Owen is doing, he doing GREAT!  He feels energetic and ready to take on all the kid things he has missed.  Riding his bike, going to crowded places, and being able to wake up and go to school or play with a friend instead of go to a hospital or avoid other people.  He is waiting patiently to have stable enough white blood cell counts for his venous line to come out.  His immune counts are the only numbers still struggling, but doctors say as long as they are moving in a positive direction we will continue to wait for his body to build his immunity on it's own.  Little by little that is happening.  It is a simple procedure to remove it but will require sedation.  No big deal, but a procedure none the less.  He is scheduled to visit an orthopedic specialist next week for his spine curvature.  Hopefully treatment of that will be pretty easy and require something as little as physical therapy or possibly a brace.  If things go well we are looking forward to a baptism date.  Owen has been so patient, but is very excited to become a member of the Church of Jesus Christ of Latter Day Saints.  Most of his friends have been baptized recently and I know it has been hard for Owen to wait.  He looks forward to swimming lessons, outdoor water fights, playing more carelessly and going without the "flushing routine" and care of his line.  He missed a lot of his favorite activities last summer.  He is ready for summer this year.

 Thinking back to when I originally became the mom of a cancer patient that I thought that day of remission would never come.  I only hoped for it. As time went on during treatment I saw that progressively our efforts with chemotherapy and radiation were paying off.  Scans were coming back positive and eventually and now they show that we are in a very good place and that we can officially look forward to being and living as "normal" ? NORMAL? What is that?  Do you ever really get to feel normal....or cancer free if you've been where we have been?

I have had to dig deep to find out where I leave behind the active fighting stage of cancer with Owen.  After all, we just got really good at surviving chaos of hospital visits, emergency visits and unplanned blood infusions.  We were getting good at it. Now we have been looking for that new NORMAL.  It seems as though there is a place inside that says it's not possible to accept life like you used to have, but that Owen should be able to live as a healthy kid doing healthy normal kid things. I will try to describe the difficulty in this change.  Here's where it gets difficult because we now have finished the active treatment phase and hopefully we'll be in the percentage of people who get years and years if not life of remission and that's what we want.  But wait, then the Dr's give us a form planning for the next five years with a heavy schedule of observational scans, tests and procedural plans.  Of course we want to be proactive in watching and keeping an eye on Owen's healthy body to make sure he stays that way, but it doesn't feel very "normal" or "done" when you think about what it takes to continually watch for reoccurring cancer.  BOOOO!  I hate cancer.  I think everyone does, but I really hate it when I think about what we have done and still have to do.  In talking to my husband about how this phase feels he described it best.  He made the analogy of life being a book and us having just read/lived pages up to this point and now we are turning the page....but the page is blank and doesn't have the words of life already written on it.  I LOVE that.  Isn't that so true of life and of the situation we are in right now.  We can only write so much of what the pages say...the rest kind of get written for us and that's the part we cannot control.  It just means that in the meantime we have to create our own way of living life post cancer. We will do it the best we can and in a way that makes Owen,  our family and others happy.  It's a new NORMAL. It's different than the normal we used to know, and that's okay.

While thinking positively, having faith and remembering the blessings we have had up to this point it is so great to be done with treatment.  There is so much we won't miss.  There is so much to celebrate about having done.  There are so many new good friends and people at Primary Children's Hospital whom we have met in this journey.  There are "we don't have to do that anymore" thoughts everyday.  I cleaned out Owen's room in the past week.  I removed boxes of medical supplies, syringes, medicine, an IV pole and stacks of home health papers and bills. It was all part of helping things seem cancer free and giving Owen a room that did not make him feel like he was in treatment.  I asked him if he was ready to have his room back to normal and he said "Yes, because I don't want my room to feel like a hospital room anymore".  I don't blame him.  He needs all that space for his toys and favorite things.
No more of these types of things in his room
And we don't need these handy either.
Owen was also given some amazing opportunities during the last year.  From meeting some great idols, influential people, and strangers with encouragement and who also offered gifts of comfort.  Our family was able to have opportunities as well that we would otherwise not be able to achieve ourselves or even know of for that matter. From a donation of family pictures (Thanks Jody Murphy photography) with which we will always treasure, to tickets to a ballet that turned out to be a great experience during the holidays.  We are grateful always. Most recently Owen was granted a wish through Make a Wish of Utah.  He wished for a Disney Cruise.  He was well prepared with what he wished for as he literally spent countless hours researching, learning about the making of, and watching personal home videos of other families on the Disney Cruise.  If you were to ask him how the ships came about, what the ship details and itinerary of a Disney Cruise is....he can tell you. The timing of when he will be able to take advantage of the granted wish is undetermined right now, but he is looking forward to going.  What an amazing thing that a charity can do.  We can never adequately thank all of the generous people who donate to the cause. It means the world to him.  Here is his wish letter:



For now, we are looking forward to continuing with blood draws that come back with great counts meaning his line can come out and he can go to school before it ends for summer. First things first and then we will dive in to all of the other things our family has always done and continues to do.  Owen has been a good support to his siblings and their soccer lifestyles while he couldn't play for himself.  He is ready to not only continue to support them, but to play some soccer and enjoy other hobbies for himself. Bring it on :)

Sunday, February 16, 2014

We Heard the Bell

Finally ready to announce that chemo #14 was a success and is complete.  CHEMO IS COMPLETE. Owen was a real happy boy to have finished this sequence we started in May.   I was happy, the family was happy and friends and nurses too.  We spent the week at the hospital (5 days, 4 nights) in a unit off of the fourth floor ICS.  We stayed on the third floor which has some perks, but also makes it harder to enjoy the amenities of the parent room and laundry machines on the fourth floor. I don't think I ever ENJOY using them, but I have appreciated the convenience. The annoying part was being in a room where the radiant heat was struggling to get the room warm at first. Let's just say it was loud.  There were also a lot less friends/nurses and doctors to talk to being on a small unit.  We like being around all of the medical professionals we know, now that we know them.  The course, Owen schedule finished with his least favorite chemo drugs.  One of them stinks so bad (to him) that he has mastered the under the sheet with essential oils on a cotton ball and watch your ipad technique to avoid discomfort and odor.  We thought we better take a picture and document the way he finally managed to get through it.
Owen is under the sheet.  It only took us til round 4 or 5 to figure out that this was the best way to administer the stinky chemo.
The best part of the whole hospital admission was counting down the days to being DONE, DONE, DONE with chemo.
Celebrating the final dose and round of 14 chemo admissions.

If you've ever known someone, a kid, who has done cancer treatment then you probably have heard about the "bell".  The bell is something that kids who spend time at Primary Children's Hospital know about.  They hear other kids ring the bell, parents hear other kids ring the bell.  I thought the day that Owen would ring the bell would never come.  I bet he felt the same way. Well, he rang the bell.
The infamous bell

What an accomplishment.  It was a family adventure and we are proud of him.
 Ringing the bell signifies the end of a treatment course. It becomes a symbol of doing something very hard and enduring treatment to the end.  I had mixed emotions about the bell at first because I was perfectly aware that there are kids who start the course and never ring the bell.  I had no doubt that Owen could finish the road map of his treatment, but I was not sure in the beginning what the course was going to look like physically or emotionally. Physically I saw Owen change in appearance.  No hair, pale most of the time, skinny, sometimes very weak and sick and other times very strong and energetic.  Emotionally he was a Rock Star.  He had bad days and he had sad days.  More importantly his attitude was amazingly positive and he was an example to me.  He shared emotional happiness and cooperation with his medical care providers that made him kind of a celebrity.  He has a lot of nurse and doctor friends.  They appreciate his honest and mature personality and I hope that he knows that most of them found it a pleasure to care for him.  I'm not saying that any other kid at the hospital didn't have this same respect, but there was something there when caregivers met and built a friendship with Owen that meant something more than just PATIENT CARE! I am so grateful for those who showed interest in our family and in Owen's success as a survivor.  We have made friends for life.  Ringing the bell does not mean interaction with any of these people is over, but it just means that now we are in a place which is positive in the course of fighting cancer.

We have already been back for a day visit since the last chemo admission.  As it goes, Owen's red blood counts were low and within four days he already needed to get red blood cells.  Getting red's means improving energy and feeling better.  It takes all day but it makes Owen much happier.  The process goes something like this:
Arrive at the clinic at Primary
Get vitals, meet with a nurse and doctor
Take a blood sample and send for type and cross (to ensure he gets proper matching blood)
Wait 2+ hours for type and cross
Receive blood from bank and take vitals again and begin infusing
Wait 2 hours while blood infuses
Take vitals multiple times during process
Finish infusing and flush
Stay 45 mins for observation of any side effects or changes
Change valves and flush/lock lines
Drive home.
Watching a movie and waiting patiently for his new blood
Left home at 8:00am and home again at 4:30pm
Needless to say it is a great thing to have this blood from charitable donors, but getting it takes a whole day.
If he needs platelets in addition, add another hour. I'm not complaining, I'm just sharing another aspect of something I won't miss now that chemo is over.  Owen has had approximately 15-20 blood and or blood product transfusions over the course of treatment. We have a lot of strangers to be grateful for.

Next on the road map (this is a form they presented at diagnosis to help us know what to expect for Owen's course of treatment) is radiation.  Or should I say "was" radiation.  We had planned and were ready for a radiation course of 10 doses.  We had met with our radiation Doctor, went to the mapping appointment for scans and consultation.  Dan and I both had hesitations, questions, answers and some uneasy feelings. It seemed that it must be done and the doctor was in the process of finishing his plan and administration plans.  Our first appointment was scheduled on February 18th. Without knowing how exactly this second dose of radiation would effect Owen, it was a challenge.  The doctor felt the same. It was on Thursday when the planned radiation became no longer in the plan.  I got a call in the middle of the day from our Dr. informing me that due to several factors he felt it was no longer safe or wise to do the doses of radiation. There were several things leading to this decision.  I'd like to say prayers were answered in a way, but I don't know that the doctor had been praying? I'd like to think that he was, but I know I certainly was.  Dan and I wanted to do the best thing for Owen while giving him the best chance at beating every last cancer cell.  Side effects were not going to be awesome if they presented due to the treatment.  I think that as much as we were hoping it would be the last clean sweep of cancer cells, we also hoped that his scans up to this point would possibly show to be so positive that they may be able to reduce dosing amounts and even hoped that we may not need radiation. Overall, the decision to omit the last radiation treatment was due a combination of things and after weighing risks with benefits our doctor is not okay with going through with any more. It has taken me a few days, but the reality is we are truly at the end of the road map.  We are not done with the battle. Owen will always keep fighting, but we have made it through the biggest part of treatment.  Scans and appointments are still to follow. MRI, Echo-cardiogram, Orthopedic consultation and follow up appointments are still on the calendar. It is amazing and a blessing to be at this point.  POSITIVE RESULTS are what we have been hearing and plan to continue to hear.

Owen had a lot of friends, school mates and teachers
share Valentines with him.  It took a large box to get them home
Big plans are in the works.  Hopefully if things go well and as Owen recovers and his body heals from treatment, he can do normal things.  Normal things are things like going to school, going to church, not thinking about "counts" before going to the store or a movie or playing with a friend. Normal things are planning activities and knowing that they will likely happen because they won't be disrupted by hospital admissions or be restricted due to distance from a hospital.  It will take practice to allow normal things to happen as we have adapted to a new/different normal.  One step so far was allowing Owen to go to his Valentine class party at school.  Sure it was only 1 hour and he wore a mask the whole time and seemed a little hesitant to mingle with classmates. It was a step in a normal direction.  Since school started Owen has only spent about a total of 2 full school days at the school.  It is definitely something he has missed and is looking forward to going again.
Playing a Valentine game at school. 















Once again we want to thank family and friends for their support. It is week by week and day by day at times but we are so happy to be at a point where we can work on getting Owen completely healthy. We know we have been blessed and that without prayers of many, many others we would not have made it this far.  Keep sending us your positive vibes and as Owen continues his battle with cancer we hope to share many more great successes.  Total health is our goal, and his goal is to feel good and do kid things again, too.  We are definitely on our way.

Sunday, January 19, 2014

Holiday Happiness

Holidays have come and gone and the slowing down I expected never came.  I guess January is here and many new things are happening as Christmas news continues to get older. Our holidays were actually quite bright.  We avoided colds, flu, throw up bugs and fevers.  Hallelujah!! There were parties. Some we went to and others we didn't and couldn't go to. There were gifts from unexpected sources and some that were given in service and love from family and friends.  To all who made it so wonderful we THANK YOU!

The amazing thing about living with a unfavorable situation, such as having an ill child, is that it teaches you how many loving, giving and thoughful people there are right around the corner. Our family and Owen especially has received a great outpouring of service and charity and the Holidays were definitely a chance for so many to personally show us examples of that.

He was thrilled with everything he got.
Kids waiting for permission to open gifts


















We attended a local company dinner which we were invited to through close family.  Only some of the family got to go to the dinner, but Owen's older brother made sure to eat enough for all of us.  We also were invited to an organization Christmas event called Mac's Gift. It was about a week before Christmas. Both events were gifts of generosity and fun for the family. The organization Mac's Gift is incredible and provided many Utah county families with an opportunity to mingle, see Santa, receive gifts and much more.  The families are all in some way alike in that they have dealt with or are currently dealing with childhood cancer.  Luckily Owen was healthy enough to go and participate.  The BYU basketball team was there along with Santa Cosmo, the mascot.  They provided games for the kids, a toy shop for all of our kids to pick age appropriate gifts and other fantastic opportunities. I am grateful to know that I can be a part of this now and in the future it will be an awesome volunteer opportunity for our whole family.  This same organization allowed those who were able to come to the BYU men's basketball game during the holidays and spend a few minutes during half time on the floor. Owen was a more than thrilled to be there and BYU tv did a interview and aired it on the jumbo screen which starred Owen and Dan (dad).  That was unexpected, but exciting.
A familiy picture taken at the Mac's Gift party!

Consulting with Santa
Chillin' with the Cosmo Santa
There was also chemo during the Christmas break.

Owen got a gift from the Kids Crew within minutes of arriving for admission.
Thanks to another boys project who had gifts donated for those who were in the hospital.

His room was so cold for the first hour or so, they had to call maintenance to help us out.  BRRR
  It was 5 days in the hospital and went very well, mostly. There were a couple of hospital communication errors and a room/floor change in the middle of it all.  Those kinds of things can be a big deal, but lucky for us ended up being pretty minor in the grand scheme of things. One of the nights Owen threw a chocolate fountain party for any nurse, doctor or med tech that wanted to come by his room.  The turnout was small, but less people meant less germs and we only had it going for about 2 hours.  He loved having people stop by to taste a treat or two, dipped in chocolate.  That same night we went to a delicious dinner just outside of the cancer unit in one of the conference rooms.  It was a meal....not cafeteria food and not home lunch.  Owen was feeling great and got permission to come eat with me.  He loved it and loved the dinner rolls especially.  He ate 3 in one sitting and took 2 back to his room.  Those who were providing the meal chatted with Owen a little and made him feel special.  Little did we know that a week later that the short conversation over dinner would spark a chance at a charitable gift and opportunity for Owen and our family.  Shortly after Christmas we were invited to a drill team competition (which has nothing to do with our families' dancing skills. We have none), but rather a sweet and special half time event where our family had the opportunity to once again be the recipients of generosity from so many and for Owen to recieve something he has been wanting for a long time.  Both the hospital Christmas dinner and the dance event were produced by the Team Mason Foundation. They were able to help provide Owen with a fantastic snowboard package and lesson. 
Thank you Team Mason Foundation

Trying out the snowboard....full of excitement

 He talked about the fact that he wanted to try it out when he got better, and they made it happen even before treatment was over.  With some phone calls and lucky timing he was already able to go and was healthy enough to have his first lesson.  Thank You to all who made it happen.  He was definitely energetic and full of endurance. Though, he did admit that he was holding back tears at one point beause snowboarding is a lot harder than it looks. He didn't give up and learned a lot. It was perfect and hopefully he'll get out on the slopes again before the season ends.

Canyons Resort Park City






As you can see, or read I should say, we enjoyed our holidays.  The family was able to be together and spend time doing "normal" things. We wouldn't have been able to without so many people caring and giving on our behalf.  It was nice to hear from family and friends via Christmas cards, parties and through internet social media. We hope you all enjoyed the season too.

The new year is wide open for healing and happiness.  We are hoping for a couple more months of successful treatment and looking toward positive results.  The "roadmap" for treatment that we began so many months ago is nearing the end. It creates some anxiety, but we are counting our blessings and plan to have many more to count. It is a definite relief to have come so far, but we ask for your continued prayers during the completion of the planned treatment.  Owen is a truly positive kid with a champion spirit and he is very aware of all the love and encouragement he has been given.  #owenstrong