Rocky Road

I'm officially the worst blogger in the world.  Before you cross us off your list, please hear me out.  Reason #1: We still need to buy a home computer.  With so many other priorities in our life, that task keeps getting pushed further down our list.  Someday we will and then I will be a great blogger once again.  Reason #2: I'm exhausted and truthfully don't know what to say about our current status. 

Our goal has always been to stay positive, be grateful, and joyfully endure this journey.  As hard as those first days, weeks, and months were along this road, we believe we've now found the low point.  It's like climbing up that hill only to get to the top and realize you are at the base of a mountain.  When we first were told the diagnosis, one of the reassurances our drs emphasized was that Mitchell's personality would not be affected.  I wouldn't necessarily say his personality has been affected, but maybe that he's added a new one?  For some moments he is our gentle giant Mitchell, expressing love and affection to all around him.  A split second later he is trying to bite, hit, claw, or pull our hair for absolutely no reason at all.  And the crying...oh the crying!  In an effort to both teach and control, he has to be isolated quite often so our other babes don't get hurt.  We've had some pretty serious injuries and don't want to find out what else could happen.  It breaks my heart to put my little angel in his room for so much of the time.  Often he'll read books or play with toys to calm down, but occasionally I will go to get him and he's just laying on the floor staring at nothing and it makes me so sad.  Then when he cries and says, "I'm so sad!" I want to cry right along with him.  He still seems to be so close to the spirit.  He continues to offer spiritual insights that amaze us.

We want to be careful not to label Mitchell or make him sound like he's been spoiled or is just acting out.  It really is more than anyone can understand until they've spent time with him.  One thing we know for sure is this clearly is NOT our Mitchell.  Our hope and prayer is that we will be able to find help for him so that he will be able to live and not be stuck in this miserable half-life.  He's such a beautiful, sweet boy and we love him so very dearly.  We are going to work tirelessly until we figure out how to help him.  Just tonight my brother called who happens to also be a DPT and he mentioned he felt it had to be the amygdalas.  As we've been reading we have to agree that seems the most obvious culprit, but then why wouldn't our drs/therapists think of that?  Too obvious perhaps, but something to look into for sure. 

One thing we would like to clarify as well is the presence of Mitchell's tumor.  We've noticed that many people think Mitchell is great now, no cancer, etc.  Mitchell will always have his brain tumor (of course unless a miraculous healing takes place) and will be subject to it for the rest of his life.  He will have MRIs every 3 months for the next couple of years and then every 6 months and then every year for the rest of his life.  This is never going to "go away."  Not only does he have the tumor (which theoretically has a terrible prognosis) to deal with for the rest of his life, but he also will likely have side effects of radiation and chemotherapy to deal with, along with his physical impairments.  This behavior issue seems to be a result of treatment.  We feel if the tumor was growing it would result in more physical symptoms as it did before. 

Because this is something we will always be dealing with, we will always need prayers, love, and encouragement.  We really appreciate any one of those three.  We have a lot to be grateful for and know that "this too shall pass."

I'm so grateful for pictures to capture good moments...it helps make the bad memories go away. 

 Beach in CA

 Love this picture from Space Mountain



Spring 2012

I am sincerely apologetic to those who are looking for updates on Mitchell's blog.  We don't have a home computer, so I really struggle to find time to post updates.  Mitchell is doing well health wise.  His last scan (Feb. 13th) was stable, which we expected.  The May MRI will be much scarier.  Physically he is great; his eyesight is stable/strong, and his muscle strength is still pretty good too.  

What we've really struggled with the past six months is Mitchell's behavior.  It started with hitting our baby, Eden, and our older son, Jackson.  It was mostly occasional and we thought it was just fatigue/moodiness.  It has escalated to a very difficult point.  He cries A LOT, hits, bites, and tries to run away, which is a problem at school/church/public.  We've met with his school administrators/teachers, and are starting an in-home program here in town to help him work through this.  He wakes up at all hours, which is both difficult for his and our energy/ability to control himself/ourselves.  It's a big, exhaustive, learning process!  I have been more of a "strict" parent with high expectations in the past, and have definitely learned to relax A LOT and let things go.  As a good friend counseled me, "You can't parent out of fear of what others think about you or Mitchell."  That has been hard for me, but I feel like I've achieved a lot of progress there.  Mitchell is special and normal parenting techniques do not work with him.  

He is still his sweet Mitchell self a lot of the time too.  I think what hurts most is to watch his frustration.  I know he is still just a normal little wild boy inside a restricted body.  He wants so badly to move freely and interact with people.  He's very aware that people--children especially--see him differently.  I struggle with my mama bear instincts, wanting to protect him, and with his need to learn and overcome his challenges.  We're going through a rough spot, but I know we'll get through it.  I have faith that we will continue to be lead and God will give Mitchell all he needs.    

 Mitch is taking a break now, but really loved his gymnastics!

Feb. MRI

"I DID IT!!!"

Our brave little guy made it through the finish line!  He finished his final dose of chemotherapy today and we are so incredibly grateful and excited to make it to this point.  We had faith that he'd make it this far, but certainly had moments of doubt when the facts and statistics glared at us.  We don't know exactly what's in store for this gigantic spirit  but we are very humbled to be pulled along for the ride. 

Most kids struggle to make it through the entire treatment because the medications are so difficult on the body.  The temodar in particular causes a lot of stomach issues and is notorious for crashing the body's immune system.  We feel so blessed that Mitchell was able to tolerate the entire 12-month cycle.  His blood counts only fell ONE time, (when we forgot to bring his essential oils on vacation with us).  It truly is a miracle. 

We know that Mitchell is a miracle, that our Heavenly Father has blessed him to remain on earth.  We feel Mitchell has a great mission and pray that we can help him learn and grow so he can discover what that mission is.  We know that life is hard and will likely throw a few more curves at us, but we have felt an immeasurable peace through all of this that truly does surpass understanding. 

Thank you all for your love and support in all forms.  We feel it every single day.  Although these (almost) two years have been the hardest of our life, they've also been the best. 

 "I did it!"  All done with chemo.

 Last temodar--the most difficult chemo on his body and to swallow!

 Mitchell has a very important role in our family as middle child.  He's both playmate to his older brother and his little sister's sweetheart.  She loves her brother VERY much.  She's looking at him with googly love eyes although it doesn't look like it. 

He threw up on himself and I forgot extra clothes this day.  He wanted a picture to send to his dad.

MRI and more

I'm so sorry that we haven't updated since our November 28th MRI.  It's really hard to update since I don't have a computer at home.  The tumor looks stable and although they don't notice a difference, I thought it looks a little better.  At this point in the game, the next possible hurdle is the MRI in May a few months after we go off the medications.  The tumor might looked flared, but that could just be that a larger amount of blood flow has returned to the area since we will not be taking the med that restricts blood vessel growth anymore.  We'll see.  It could look great too, which we're optimistically hoping for. 

We got all of his scans on CD and I was hoping to put one on here to show everyone, but it's copyrighted and there's no way to save the images.

Mitch has been trying really hard to improve his behavior and seems to have suddenly grown up in the past week or so.  I was really proud of him the other day at school when one of the little girls was bossing him around and instead of fighting with her, he handled it by soliciting the teacher's help.  I know it doesn't sound like a big deal, but it was a glimpse at my old Mitchell a bit older and I loved it. 

Our sweet little friend Luke who has an epyndamoma successfully completed his radiation and chemo this past June after 8 months of treatment and was stable until this past week when they discovered more tumors had grown including one on his spine.  Please pray for him and his family.  They are really great people and our dear friends during our stay in Seattle.  The hardest part about this trial is the constant ups and downs.  There's rarely a middle ground and it becomes exhausting. 

Thanks for your support everyone!  We cannot do this without all of you.         

Finally Pictures!

Poor Mitch has had a hard few weeks.  Still doing great, just struggles day to day with behavioral outbursts.  We'll get it figured out and I'm sure things will be well.  Our next MRI is Nov. 28th.  Here are pictures from this summer and fall. 

 Mitch at the library.

 Playing with brother and sister.

 Mitchell and Aunt Sharon's baby sheep.

 Always love the pony rides at Remlinger Farms!

 With cousins Jake and Mackayla

Snoqualmie Falls

 Cherry Hill

 We love to see the temple!

 Lagoon! 

Thumbs up meant he wanted to go on that ride again, thumbs down meant no thanks.

 Cooling off in the fountains with grandma. 

This was a double chemo week for Mitch, plus he caught a horrible stomach flu but he was a trooper!

 Wipeout course with our cousins.

 HAPPY HALF BIRTHDAY MITCHELL!!!

He wanted a water gun fight and we had tons of friends show up to play and celebrate. 

 Central Washington Fair 2011

 Climbing through the laser beams at Jackson's spy training birthday party.

"Take a picture of me mom!"

 Happy Halloween MJ!

We love our sweet Mitchell dearly.  Yes, this is all very hard, but we can do it and we'll keep doing it because we love this little boy "To infinity and beyond!" (Then Mitchell replies, "I love you Woody!")

On October 23, (Jackson's birthday,) our sweet little friend Peyton passed away.  We pray for comfort for her family.  I KNOW these special angels who come to earth and fight these battles hold special places in their Heavenly Father's heart.  I pray I can care for my little sweetheart as his Heavenly Father would have me do. 

Oh-Bla-Di, Oh-Bla-Da, Life Goes On

The craziness of life seems to have taken on a snowball effect.  Although I keep thinking life can't get any busier/crazier, it does.  And yet I still think that just around the corner is a patch of easy peacefulness--must be a mirage! 

Our church's general conference was this last week and it was as if I came into sit by the fire after plodding along through a blizzard.  I felt that patch of peace; a feeling of optimism that I CAN do all of these things; and such a happy gratitude as well.  Now I'm back out in the blizzard with that memory of the fire to keep me pushing forward. 

I've had two dear friends struggling with major illness and I want to serve them and their families.  My responsibilities at church are also very important to me, but time consuming.  Our little puppy is as good as they come, but still, it's another body to care for.  The kids' schedules keep us occupied every night of the week.  Not to mention drs appointments and volunteering in classrooms.  My house is definitely not as tidy as I'd like it to be these days and my chances to run are few and far between.  I know I need to let some more things go.

Mitchell is doing really well physically.  For the past month we've had him in gymnastics and put PT on the backburner.  He lost interest in our sessions, and the idea to try gymnastics came to mind.  He LOVES it and exerts more effort in class than the rest of the week combined.  He has made progress too!  He's jumping off two feet now (albeit not very high), and seems more agile to me.  Tonight during his class I tried to hold back tears.  He tries so stinkin' hard and yet there still is such a large deficit in what he can do and should be able to do.  It's so hard not to remember my wild little boy bouncing off the walls and wonder what's going through his mind now as he can't make his body do what he wants it to do.  Yes, I am so grateful that he's come this far and yet for him, I'd be so ecstatic to see him free from these limitations.  Tonight as I thought about all of this and his innate optimism, I realized that his little spirit is compatible with this trial.  I know he gets frustrated, but his optimism will always carry him through and continue to push him forward.  That is something to be very grateful for. 

He has also started preschool and seems to really enjoy it.  He's spent some time on the "watching chair" (their term for time-outs), and of course I knew that would happen.  He's angelic most of the time and suddenly a switch goes off and he loses all control.  For that reason I don't like him out of my sight, but I know it's best for him to be in the world and learning how to deal with it.  He told me a boy stuck his tongue out at him and that made him feel sad.  He also said he plays by himself at recess.  All things to be expected, but still so heartbreaking for a mama who is already so scared to send her little ones into the harshness of the world. 

Other than the behavioral outburts I think we're doing really well.  We are so grateful to all of our supporters out there!  On a sad note, our sweet little friend Peyton (a dipg patient) is declining.  I think about her and her family a lot each day.  Please pray for them.   

September is Childhood Cancer Awareness Month!

• Every day, 36 children are diagnosed with cancer.
• The average age of children diagnosed is six.
• More than 40,000 children undergo treatment for cancer each year.

I am copying this from our friend's blog because she did all the work for me and I couldn't have said it better!  Often we don't get involved in causes until we understand exactly what it feels like to be on the receiving end.  Take time to say, "Thank you's," for your family's health and then look around you at how you can help and bless others. 

1) Donate money for children's cancer research. Curesearch.org  If you donate $36 this month, you are entered into a drawing for some vacations. Also, donations are matched by sponsors this month!

2) Volunteer with a local cancer organization. You can volunteer for a fundraising event or a community event in support of families dealing with childhood cancer. If you aren't sure what's available in your area, you can start with the American Children's Cancer Organization, the largest grassroots children's cancer organization in the U.S.

3) Give the gift of music. Purchase songs on iTunes through MyMusicRX.org and iTunes will donate up to 5% of proceeds to the Children's Cancer Association. Other examples of gifting music to local children coping with cancer can be found here.

4) Participate in a Fun Run/Walk, Bike Ride, etc. There are so many out there. Here are a few:                
     a) Find a Curesearch Walk near you.
     b) You can walk or ride your bike to support the National Brain Tumor Society.
     c) Leukemia and Lymphoma Society's Light the Night Walk (in Oregon and Idaho)
    
5) Donate your hair. Each organization has different guidelines which you can check out by following the links below.
     a) Locks of Love For children who have lost hair from various types of medical conditions/treatments.
     b) Childhood Leukemia Foundation
     c) Pantene Beautiful Lengths For all cancer patients, not necessarily children.  (This is the place I donate my hair because 100% of hair goes to wigs.)

6) Create your own event. I would like to do this!