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

Saturday, January 4, 2014

From Then to Now

Just had to post this picture today.  I have been feeling a little mixed in emotions during this Christmas Holiday break.  I found this picture of Owen and was really struck with the realization of how much our lives have changed since this monumental "last" soccer game Owen had in May.
May 4th, 2013.  Saturday soccer morning and then a visit to the Dr in the afternoon for pain.
Owen was very energetic and played a full effort game that morning.  Now, 8 months later we just celebrated Christmas (which I will post about soon) and are looking ahead at the end of what we hope will be a very successful treatment for him.  As much as we have been readjusted to what is normal for our family, it's also hard to remember sometimes what it was like to have 4 healthy kids. This picture has two sides.  One that reminds me of how in an instant life can turn upside down. And the other reminder is of how we just do what we have to in life and when we get to a new challenge, we take it on.
We are nearing the end of the treatment plan we started in May.  Two more chemo admissions at the hospital and then we'll create a plan with Dr's for one more round of radiation.  In eight long months we have come a long way, but there is a part of me that fears the end a little knowing that all the scans previously have looked good and so we expect that we will continue to have positive results, nothing negative. Almost miraculously things have improved and disappeared.  Nothing would indicate that the treatment we have done so far is not kicking Owen's cancer.  More scans will be done after the chemo is complete.  I am thinking positively and I know Owen and our family has great plans for the post treatment celebration.
Just feeling a little excited and a lot proud of my little champ, Owen!  Sharing some feelings
and updating the blog at the same time.  Win, Win!

Sunday, December 22, 2013

The December Digest

At Primary Childrens Hospital Dec 2013.  He just got a fresh bag of red blood cells and felt fantastic.
There is nothing I can do to make up for the lack of posts.....except to post. Part of the reason I put it off for so long is because there is so much to share.  Sadly enough my personality says don't do it because you're already so far behind that no information will be adequate. Which if I truly tried to share all the highs, lows, successes, achievements, and details of Owen's last couple of months it would be pages and hours of info. I won't overwhelm myself or readers with that.  Here  goes to a shortened but good enough blurb.
November was the great Harvest fundraiser. First of all I must say that I have learned that people are more good than you can imagine.  I never thought that in my little world there would be so many people wanting to do so much.....FOR MY FAMILY??  The fundraiser was a success because the people who put it together and donated time and goods to make it happen we're interested in making it the best that it could be. "Best" in the sense that if there was going to be a fundraiser for Owen and our family they wanted it to be something special. I couldn't believe how well it went and how many people actually came.  People came to help. People came to eat. People came to donate and people came just to see what was going on.  I was AMAZED. The highlight of the fundraiser was the live auction with an auctioneer who truly knew how to make a night of donating so much fun. Our family is so lucky to have friends and family who care so much. I'll forever be grateful for the hours of preparation that went into the night and for the generous ways that people have served us.

Owen attended the fundraiser.  He was for the most part pretty healthy. He was fresh off some low blood counts and was mildly low on energy, but was thrilled to be there. It was so much action for him and after seeing friends and cousins and hearing the auctioneer.....he informed his dad that he needed a break.  They went outside for some air. They made it toward he truck at which point the build up from so much activity came to a head. The result was a return of his dinner onto the parking lot, along with his NG tube (nasal feeding tube).Though he had a ton of fun and felt very special being at the event, it was overstimulating. The tube has been out ever since and as long as he promises to keep eating and not lose weight he can go without it. He's kept his weight up great without it.
Don't judge the cake.  I let him blow the candles out even if the cake was a fail.
Also in November was Owen's Birthday! He turned eight and that was great! Cheesy, but I had to write it. His birthday was spent hanging out with family, playing with presents and going out in the cold for family pictures. Thanks @JodyMurphyphotography. I tried to make Owen happy with an attempt at a Lego cake. I'm not a baker. Owen told me I should've just bought him one. It was bad but it tasted great. The cake will be memorable because it was blue and very unlike a Lego. We celebrated a few days before by doing something together. We always go out to dinner as a family when we celebrate a family members birthday. Owen's dinner was at Red Robin. The coolest part about that was for once in a long time he was healthy enough to eat out without being susceptible to so many germs. It felt good to be together and to do something normal.
Visit from Grandma and Grandpa for Owen's Birthday!
The streak of feeling well comes and goes as Owen gets through his treatment. We've been in the hospital to get blood or platelets or both in between chemo. He has evaded several sniffle and cold bugs -knock on wood- during the last couple of months. He had a MRI scan performed about 3 weeks ago. The results look super encouraging. We are down to 3 chemo rounds and he is currently being dosed so by Monday we can officially say we only have 2 left. Understand that 2 rounds of chemo could take a month + to get through. It's good to be looking forward to a more promising end of treatment. We have a schedule of radiation to do again after the chemo is done. That is a unhappy thought, but Owen has been a champ and even though radiation is by far what caused him the most discomfort, he will be strong through the next round I'm sure. I would like to say that by March we may have a more normal lifestyle. But with cancer, it's never really normal again. March is just where I have mentally created a possible done with chemo zone. People ask all the time when his treatment ends. If cancer patients bodies responded ideally....he would have likely been done or close to it already. There is a plan when it comes to treatment, but I have learned that all things are subject to being modified. The last 7 months have taught us that it doesn't always GO AS PLANNED!
Kids getting warmed up at Temple Square.

Date night with mom at the Nutcracker!
While Owen was in between treatment we were able to go to the Salt Lake Temple and see the lights.  We were given some tickets to the Nutcracker at the Capitol Theater.  Owen, his sister and I made a date of it and went to dinner before the performance.  We were a little disappointed because though Owen's counts were good, there was a young girl in front of us coughing on and off throughout the performance.  It wasn't just a cough, it was a bark.  I was able to help Owen stay far enough away and thank Heavens she was in front and not behind us.  Not that those people in front of her should have been the victim of her droplets, but I would assume they had an immune system stronger than Owen's if they were to be infected.  Just another simple reminder that if your kids are sick, they are better off at home, PLEASE :)

Owen hanging out with Cosmo at a Christmas party.
Tyler Haws in the background and Owen's second
chance to meet him as well.
Currently we are in treatment at the hospital for chemotherapy.  Owen is doing very well and the worst part of this dosing is a smell that he can't tolerate of one of the drugs.  We have figured out that if we make a tent over the bed with a blanket before the nurse brings in the meds and make sure he has his essential oils for smelling then the smell is not an issue.  Now that we are at dose 12 of 14 for chemo, we have it down. Christmas will be here before we know it.  The New Year is upon us.  We are very blessed this season to have many people doing many great things to help financially, emotionally and to share words of encouragement.  I have struggled a little to figure out how to adequately express gratitude to all, but I will fail if I try because there are too many to count.  From those who are supportive anonymously to those who are very involved and asking and serving in so many ways "THANK YOU".  We have felt your love and also the love of our Savior who is very aware of us.  May you all be blessed in many ways throughout the season and in the new year.  We are looking forward to a great Christmas break with family and at home enjoying time together.

Tuesday, November 12, 2013

Good things about November

November. The month of November brings lots of things I enjoy. I'll share the good things first, before I even bring up the negatives about November. November is my birthday month.  I don't hold my birthday very high on the list of things I get too excited about, but I share my birthday month with Owen.  We are on the opposite ends of the month, but it's still November.  Thanksgiving is in November.  My favorite holiday is Thanksgiving.  No gifts, less stress because it's group effort, and good food.  How can you go wrong?  The leaves are beautiful, the air is crisp.....and in comes the negative.  It begins to get cold. Suddenly the pressure of Christmas shopping kicks in.  The landscape changes to "brown", wet and often dark. I don't like winter. I shouldn't complain because there are a lot of great things, but in all honesty that sums up my November mumbling.  November this year has all those usual feelings, plus add in a whole new set of feelings and thoughts about Owen, his condition, and the unpredictable holidays. I'm overwhelmed.
Though we are in the hospital for a chemotherapy treatment, Owen has had a few days of awesome health over the last weekend.  Before that, he endured at least 6-8 weeks of discomfort and various problems.  I thought we would never make it out of that slump, but it was actually quite a miraculous recovery which allowed him a weekend plus a couple of days of FUN!

He went to a BYU basketball game, visited a fire station, and played at grandmas house.  He even had enough interest in building a Lego set to finished it completely.  He had not even felt well enough to do that for at least 4 weeks. The most monumental improvement was eating by mouth.  He finally asked for food and he asked for lots of kinds of food.  It started with flavored Vitamin Water and from there his menu widened. Hallelujah for food!  Hopefully he'll start gaining weight again and if we are lucky his chemo won't effect his eating too much.

 Excitement of November this year will include a fun evening event coming up on the 19th.  The Helping Harvest for Owen Fundraiser which has been organized by family and friends is near.  I have tried to express our gratitude for the incredible generosity and hard work that has gone into making this event great. I feel like I will never be able to express adequately how humbling it is to have my family and Owen be the recipients of so many good and thoughtful people.  If you are interested in knowing how INCREDIBLE this event will be, check out small sample of what you could win and or bid on:
Hotel nights at a Utah lodge and Hilton
Car maintenance package from Ken graft Honda
Hand made quilts - all sizes
Lots of home decor donated by Westco
Hunting accessories by Quackie Ridge Archery
Boutique Purses
Professional Photography sitting by touch of fun photography
Auto detailing
$25 Mountain America Visa cards
Several salon services
Restaurant gift certificates (several different restaurants)
Dental services from Blue Mountain Dentistry and Platinum Dental
Zoom whitening and a Sonicare toothbrush from Blake dental
Swimming lessons for 2
Girls accessories
Scarves and hand knitted items
DoTerra essential oils (4 separate kits)

Dinner, fun, and exciting's the flyer! (Pass it on) and get a pdf link on the Caring for Owen Facebook page so you can print and share.  

Friday, November 1, 2013

Playing for A Purpose and Much More

Days full of feeling great have been skim lately for Owen. His latest post described the radiation side effects that he is just finally tapering down from.  Talk about a sore throat. He has still not eaten only about a cup of food by mouth in the last 4-5 weeks.  His NG tube is thankfully life sustaining when it comes to nutrition. I can't imagine the weight control I could have if liquid vanilla shake supplement was all I could eat.  I just count my blessings that he is okay with that one option. Plain instant potatoes (1 TBSP total at a time) string cheese cut into mice sized bites, and shaved plain ice have been the only foods that have gone in his oral cavity beyond medication. The hope is that this week as we see his pain subside from healing esophagus tissue, he'll hopefully be open to swallowing a larger variety of food. Although the days have been long and I have been impatient for Owen to be able to feel good, some awesome moments have occurred.  The following video link is a GREAT clip of a awesome opportunity involving Owen and his big sister.  Ultimately it was great for the whole family to share in the high school soccer success last Friday. Video link championship dedicated to Owen Check it out! Thank you KSL for a well put together story with accurate information! (photo credit Daily Herald)Photo: Love this photo; thought you would too!  Send me your email, and I'll send you a full res file. These young athletes were willing to put themselves out there for a cause for someone else and play for a purpose beyond there own.  I have learned so much about lightening the burdens of others from all the great examples of those who care so much for our family and especially for Owen.

Halloween was not about candy or costumes. We had fun thinking about those things as the holiday approached. The reality of the night was that the discomfort Owen was feeling required him to think more about nausea control, relaxing, and sleeping than treats and ghoulish things. He felt crummy enough that Halloween would have to happen next year, and being sad about it took more energy than he had. I felt for him in the sense that a kid should be doing kid things, but in another way I was glad to be avoiding germs, cold weather and the exhaustion he would pay for later.
The door bell was ringing with trick or treat kiddos......hopefully Owen was at least dreaming about it!

Toy suction cups and low platelets = perfect round bruises in an instant!

This was the biggest smile he could muster up before we carved his pumpkin!
October is gone, November is here.  We are hoping for the last 5 chemotherapy doses to be productive, quick and as least invasive to his system as possible.  Here's looking forward to November for a fantastic fundraiser event planned for NOVEMBER 19th. A Helping Harvest for Owen. There has already been so much work put into the event and the donations that are coming in are remarkable and humbling.  Mark your calendars and watch the Caring for Owen facebook. Click here to visit the page. Come back here as well for upcoming posts with more information.

Tuesday, October 8, 2013

Fevers and Finishing Radiation

(Written Friday Oct 4th) It's fall! It snowed for real today.  Snow was on the ground when we woke up this morning. I don't like cold weather, or snow, and I especially don't like that we are going into the worst part of the year for "colds" as in getting sick. One bug has already made it through our house and most of the family (imagine that 2 weeks after school started? How absurd?) Luckily Owen didn't get it.  It was a crazy stuffy head, runny nose headache cold.  Not too bad, but definitely would have been uncomfortable.

We didn't however make it through the week without a trip to the hospital for a fever.   Owen has been struggling for about 48 hours with a pretty significant temperature and we have been in our "time share" at Primary.  Luckily there is no sign of a bacterial infection at this point. It's either viral or a response to chemotherapy or radiation treatment.  Either way, it requires a hospital stay.  On top of that there is a serious case of inflammation in his esophagus.  Imagine your throat burning with heart burn symptoms all the time, with something stuck in the same area and it's aggravated by movement which causes you to heave and throw up.  Owen feels like that. It's a tough situation in addition to the 102-104 degree fever. Miserable

There is one thing about Owen and that is his amazing ability to cope.  He is really a champ when it comes to being able to go through with his treatment in a mature, patient manner.  His radiation has required a lot of daily driving, staying completely still for about 5-7 mins and dealing with early mornings when he may not feel like even opening his eyes. The staff at the radiation center is amazed at his tolerance and ability to "just do the procedure". I can't say he never gets upset or mad about treatment, but he really does have a reputation for being pleasant in a very unpleasant circumstances.  He's popular - in a sort of great patient sort of way.

One of my favorite things this last month has been watching my other kids really try to grasp the magnitude of time, energy, sacrifice, money, and emotion that goes into caring for an ill family member .  I think there has been some key turning points in their understanding of how they play a role in the family unit.  I'm certainly not a role model mother, but I feel like we have helped them find ways to make moments mean more when they are with each other and especially with Owen. It's hard to have the family split apart in terms of hospital, work, school and everyday activities.  Having a parent at the hospital day after day has certainly been difficult.  But there is no other way to provide personal love and comfort to Owen without being by his side. Our other children have been more than understanding and patient as they have had to take responsibility for themselves a lot more.
Owen and Kara make Halloween Bats to decorate the house while he was feeling good!


Radiation this round is DONE, FINISHED, NO MORE! This is a great accomplishment for Owen and our whole family because the biggest reason he has been hospitalized this time is likely due to radiation side effects and especially the pain it caused.
Today is a good day.  We can feel good about sticking to the plan and finishing the whole course of radiation, even though I was very anti-finishing only days ago.  It is truly a blessing to have trusted Doctors, myself a little and especially Dan as the days came and went and I didn't stomp my foot down and say "no more"  I will not look back. It is done.
Some nice gifts, words of encouragement and decorations to keep Owen's spirits up. 

Though we are likely spending another 48 hours minimum here, it feels like things are looking up.  Fever has dramatically improved (knock on wood and hope that I don't jinx something by saying that). Pain in his esophagus is still an issue, but we are comfortable with the management now.  If Owen can find moments of positive and happy in all of this, I must do my best to do the same.  He is a champ!
During his 45 mins of feeling "okay" he opened a gift from his radiation therapist.  They were
so good to him and after spending time with him almost daily for a month they are friends.  We won't miss
going to radiation every day, but we will miss the great people who took care of Owen.

Tuesday, September 24, 2013

Getting the Hang of It

I'm going to admit something.  I meant to be a lot better at updating and informing family and friends about the status and condition of Owen throughout all of his treatment.  I haven't been very good at it. There is something overwhelming about writing down all of the good, the bad, the busy, the crazy, and undesirable sides of cancer.  It claims our entire family in many ways.  Lately I've  had a few bitter days.  Sometimes it's just bitter moments, but honestly there has been a few bitter DAYS.  However, I have had many more positive, blessed and great days to reflect on and thank Heaven for that. I made a declaration to several people at this point that deciding what to do, how to do it, when to do it and which thing is good, better or best for Owen and our family has become all I can focus on. I have had to make myself okay with the fact that making ONE MORE DECISION is sometimes just too much.  There is just something about decision making. It has never really been my best friend.  Having to make hard decisions and so many decisions has really brought me to know myself.  So, back to the part about being poor at writing and posting, deciding when to do it and what to write about is the overwhelming part. It's one more decision I tend to avoid.

I know one day I will appreciate all the documentation of this part of Owen's life.

Owen started chemo dose #8 today. It's a hospital admit for 5 days.  We've done this before.  It marks his first dose into the second half of treatment.  Chemo is not the only thing he is doing.  He has been receiving radiation dosing for 3 weeks, everyday  (weekdays only). The process of radiation each day looks something like this:
1. Get up
2. Get ready
3. Leave with enough time to drive to Hunstman in SLC
4. Arrive at Huntsman
5. Wait for radiologist to take Owen to his treatment vault
6. Proceed with treatment of radiation
7. Finish and gather belongings
8. Leave the radiation clinic
9. Drive home

Numbers 4-7 take approximately 10-15 mins.
The travel time takes up the rest, approximately 2 1/2 to 3 hours a day. As you can imagine it is difficult to plan for much on a regular day, and when you have 3 other kids and their lives to manage, it is even more difficult.  I won't go into what it is like to manage a work schedule for either parent. You can imagine.

Let's just say I'm glad we won't be doing that forever. Owen is remarkably pleasant about the whole process and is very liked by the technicians.  His attitude and cooperation is fantastic.  I'm grateful for that and I know that the technicians and nurses like that about him too

Look closely and you can see the last brave eyelash hanging on for dear life.  One left :(  #theygrowback

Owen is doing remarkably well.  Drs and nurses all say he looks great.  We tease him at home that he is "running out" of eyelashes and eyebrows.  He takes it very well..  Having no hair has got him some great options for a Halloween costume.  Dan and I suggested he should be a monk.  He says that no kid is going to know what a monk is and that it's dumb if nobody knows what you are.

We had some great days at home together in between chemo.  We had to visit the hospital twice, once for blood and once for platelets.  But it was almost 2 weeks off from chemo treatment.

Summer came and went and one of Owen's biggest complaint about that is how he spent most of the warmest days in the hospital.  They were probably days that were too hot to play outside anyway, but he missed them. He watched his siblings play a lot of soccer.  We braved the back row into a movie theatre while his counts were high last week which made him feel a little normal.  Matinee movies, back row, no coughing, sneezing or sickness spray into the air over your head is the only way to go. And just yesterday he was able to go to the school carnival - antibacterial hand sanitizer in hand - and he loved it.   

This is a picture of Owen and dad taking a picture of the big "O" for Owen created by the smoke stream of an airplane that flew over for him during the carnival.

Finding ways to make a family function with a HUGE HICCUP in the way we thought we would live, is definitely a process.  I have to express my gratitude to all who have offered and helped in so many ways and still continue to be a great support to our family.  It is great to learn and grow through experiences. I don't always learn very graciously, but I am learning to trust more in the Lord's plan. I recognize that the changes that are required by our family to get through this time will build character and testimonies.  It requires sacrifices in ways that are uncomfortable for us and especially for Owen.  There is no better way to describe it than this quote I found. 

It's frustrating to say that we are getting the hang of cancer treatment.  Who wants to get the hang of that?  But, that's just how it goes.  For now it is good.  Treatment is working and our fingers are crossed that the second half of treatment does what it's supposed to.