Life Goes On

It's not that I want to quit Mitchell's blog, or that I just don't care.  It's not even that it's too hard, at least not to my conscious mind.  Perhaps subconsciously I don't want to "deal" with any of these emotions so I avoid them instead.  I don't know.  I do want to keep remembering and maybe this is a good way to do that.


Our friend, Keith, passed away within one hour of Mitchell.  He was an almost five-year-old sweet boy battling medulloblastoma.  His mother, Darcee, and I have corresponded for almost two years.  She definitely understands how I feel.  I hope she doesn't mind me linking her blog, but if you're interested in reading my thoughts, hers are almost identical.

We are doing okay; that's the only word that can capture the essence of our feelings.  I am mostly grateful for the beautiful life we live; we have the gospel of Jesus Christ, each other, necessities of life, and our health.  I am so grateful for my husband and other children--they mean everything to me.  Gratitude fills the emptiness in my heart and allows me to continue forward being happy.  That being said, there are minutes, hours, and days that come where I feel really sad.  None of this seems possible or real.  How can he be gone?  Why did he have to suffer so much?  Although I remember many good, beautiful memories, I am also haunted by recollections of his frail brave body, pushing forward day after day.  That breaks my heart and always brings tears.  Sometimes I just have to sob and feel it all as much as I try to avoid it.  It's hard...there's no way to change that.

I've dreaded certain days coming, but have been amazed that on those days I don't feel sad at all.  Obviously it is a blessing and I am grateful.  I admit that the holiday season itself has been a challenge.  Nothing in particular sets me off, but there's just a feeling of sadness.  I am, however, very proud of myself because I did put up Christmas decorations even though I had about zero desire to do it.  I am excited to celebrate with my children and this Christmas we have some service planned that I hope will make things brighter.

We continue to appreciate all of the love and support we receive from our family and friends.  Whether a text to let us know you're thinking of us, or a treat left on our door step, it all means so much.  I was talking to my cousin the other day and she said her friend who lost a child mentioned how those acts acknowledged to her that others still remembered her child.  I think an underlying fear for us parents who lose children is that everybody's life moves forward and there's a desperate feeling to keep your child's "life" going.  It's just so hard to do because the truth is, the world DOES keep moving forward even though our lives are stopped/slowed.  It hurts, but it's just the way it is.  That's why it feels so great to read of other's service in Mitchell's behalf.  Even though he can't be here any longer, it is nice to see his memory moving forward along with everyone else.

We pray you all have a safe and happy holiday season.  Cherish your time with your loved ones and focus on those things that matter most: the Savior, family, and caring for those who need.

In Memoriam of our Angel

This is the slideshow Chad made for Mitchell's funeral.  It's so beautiful--I had to share.  Chad put a handful of the recurring quotes Mitchell always said.

Mitchell Barclay Hatfield: February 20, 2007 - September 2, 2012

Mitchell Barclay Hatfield came into this world on February 20, 2007.  The pediatrician from the first called him "stubborn," which although initially made his mommy mad, in retrospect is very true and a gift.  He knew his mission and that he didn't have long to complete it.  He was always a very funny, playful little boy who liked attention and to be in the action of things.  Life for him changed suddenly in April of 2010 when his first symptom--a droopy, non-tracking right eye occurred.  Yet, he was still able to run and play until November of 2010 when he suddenly awoke unable to walk.  He was then diagnosed with a brainstem glioma and endured 15 months of treatments.  Every doctor and nurse he came in contact with were immediately drawn to his sense of humor, smile, and playful warmth.  Wherever we would go, he'd say, "Hi, I'm Mitchell!" and proceed to divulge every detail he had.  He loved his brother Jackson and sister Eden very much.  He and his brother would often be found sharing the same bed and staying up late talking.  Of his sister, he often commented, "Isn't Eden beautiful?"  The love was and is mutual.  His mommy always knew he was special and laughed at his antics.  His dad was and is his best buddy, "No matter what...we just are."  Although we are sad that today, Sunday, September 2nd he left our earthly home, we are so grateful for the knowledge that we will be together again.  Mitchell was just too good for this world and came to bless our lives and those of all those who met him.  We love you always and forever Mitchell!  We will miss you; until we meet again!

Share Mitchell's Smile

I know many are anxious for an update on Mitchell since things are always changing.  He has seriously declined and as of the last couple of days has not been able/willing to swallow food and drink.  This is common as our bodies slow down and prepare for death.  He sleeps almost all day and is almost completely unresponsive/communicative.  Obviously he no longer "feels" like our little boy, but it does feel like we're holding an angel and we are cherishing these days.  While this is obviously painful and heart-wrenching, we are trying to focus on what we know to be true.  Death is not the end, but another glorious beginning.  Just as when we come into this world, death is the portal to move into the next; a world of peace, free from pain and sorrow and full of joy and love.  We have felt angels administering to us and Mitchell in our home and it has been so special to participate in such a sacred sphere.  Even still, there are moments of intense sadness, fear for how I can ever let his little body leave my arms--and I KNOW it's just a body!--and pain watching his little body deteriorate.

One thing that keeps us going is our Mitchell's ongoing service to us.  While he can't talk or move, he still tries so SO very hard to smile for us.  It is truly inspiring and heartwarming.  He has done this all through these past two and a half years and we never cease to be amazed at how he knows we need this and how much it lifts us up.  He is totally amazing!

After weeks of prayer on various issues, one of which is a way to honor Mitchell and who he is, we received a very (and I mean VERY) strong impression that we are to hold a day of service in Mitchell's honor.  September is Childhood Cancer Awareness Month and we feel it is fitting to honor Mitchell as well as all of these amazing souls who have both succumbed to or survived cancer.  This service can be big or small; individual or as a large group.  We plan to wear yellow and feel that this service will make a big difference for both those who serve and those who will be served.  We are working on a website: mitchellsday.org, which should be finished later this week.  We also should have some publicity materials, ie video, out soon too.

The day is SATURDAY, SEPTEMBER 15th, but if for some reason that date doesn't work for you, please make an effort on a day of your choice in September.  We are hoping for people to email us via the website and we'll post your stories: what you did, how you felt, how it impacted your community, etc.  We hope this will be an ongoing annual event, and possibly might have a facebook page with monthly ideas of service activities to keep us all going.  We believe service more than anything else can change the world faster and more effectively than anything/anyone else and to this end we strive to honor Mitchell's legacy!

Mitchell's greatest desire in life was to be a missionary, which essentially is a life of service.  We know this is how we are supposed to honor him and his smile.  PLEASE get out there and "Share Mitchell's Smile" on Mitchell's Day!

Our Mitchell Boy

We have had a wonderful month of family time.  We were able to see extended family members at a family reunion as well as our cousins, aunts, and uncles.  Mitchell has a difficult time in crowds because of noise, so we stayed home part of the day so he could relax.  We also spent a lot of the month going on and off of medications trying to find something that would bring him relief.  He was spending approx. 6-8 hours each day screaming.  He couldn't respond to questions so we didn't know how to help him and he didn't like to be touched so we pretty much just had to sit there feeling helpless and frustrated that he has to go through such agony.

As always we continued to pray for direction in how we can help him and for him to feel how much we love him.  We also prayed for at least a level of relief to come to him so he would not feel such suffering.  Knock on wood, but we are hoping we've found the right equation of meds for him to feel a bit of comfort throughout the day.  It will be a constant evaluating process as to what level of intensity he should be at, but at least we know these particular meds can work.


We started hospice a couple of weeks ago.  They come in twice each week to check vitals and make sure we are stocked with the necessary medications.  They also have a person who comes in to talk with Jackson, making sure he is emotionally healthy and well.  I feel our family has been blessed with amazing strength through all of this. I do think overall Jackson is doing well, but I also want to make sure he is able to express his deep-down feelings to someone because he doesn't always like sharing them with us.

Both of our families have been amazing helping us through this.  We're very fortunate in that regard.  I feel a large part of this trial is learning to allow others to help us, but I am really struggling with how to make that happen.  I truly do spend time each day thinking about how someone might be able to help me, but I end up feeling a lot of stress by the end because I can't come up with anything!  That is why it is so wonderful when little "treats" show up at my door or random forms of service because I feel the love and it was something someone else thought to do.  Does that make sense?  We have learned a lot about service and supporting people in trials from so many who have done so much for us.  It is a priceless blessing.  Just last weekend some amazing individuals spent hours and hours putting on a garage sale fundraiser for our family (and another dear friend going through a similar trial) and it was so touching to see the time and thought put into us.   There are so many wonderfully kind-hearted people in this world!

These are some of the beautiful pictures our very talented friend, Mary Thompson, took for us about a month ago.  She captured our family beautifully.

Living in the Moment

I'm not quite sure where to begin.  I guess I'll start with the June 22nd MRI.  The poor doctor filling in for our oncologist (who was on maternity leave until July 2), was sure put in a difficult position.  The MRI showed stable results, yet we were telling him all of Mitchell's symptoms, which are certainly alarming.  Because of the conflicting accounts he brought the MRI to tumor board the following week and after looking very closely, the team decided there could be growth on the opposite side of the tumor.  We went again this past Monday to speak to our regular oncologist, and she basically said that if Mitchell had no symptoms she would just chalk the MRI up to the drug he was on, which often produces sketchy MRIs.  But, because his symptoms are so quickly and heavily returning, she agreed the tumor is definitely growing back.  

Our oncologist had not seen Mitchell since February--our last MRI she was present for--and she was very saddened to see the decline he had experienced.  She shared that she was emotionally invested in Mitchell and had very high hopes for his outcome.  She was very sorry that not only was he declining in health, but that he had experienced such a drastic behavioral change.  She agreed that treating the tumor at this point is not worth it, nor would it be extending a "quality life."  Mitchell's behavioral challenges are truly a mystery to all involved.  They have never heard, nor seen a brain tumor patient have these struggles to the extent Mitchell has them.  He was struggling with harming others for several months, but in the past month especially has done a lot of harm to himself.  He bites his own arms, legs, hands, etc; tries to choke himself; drown himself; fall down the stairs; and many other random and sad acts.  All of this is definitely NOT our Mitchell. He has said he hears voices and often seems conflicted.  

Medically, both eyes are almost completely shut all of the time; his right arm shakes; his balance is gone; his swallowing reflux is disappearing; and his speech is becoming less intelligible.  He cries a lot of the day and night (although we just started a sleeping pill--yay!).  His doctors said there are no pain receptors in the brain, therefore he should not be experiencing pain, but it makes no sense.  He is clearly in discomfort.  Despite their claims, we are still giving him small doses of oxycodone hoping to alleviate whatever it is that bothers him.  

I realize this is all quite depressing and dismal, but we choose to be grateful.  We are very grateful for the time we've been given with him.  He is such a special and powerful little spirit that has brought so much happiness and joy not only to us but those around him.  How lucky are we to have been entrusted with such a boy?  My sweet husband still continues to hope for a miracle.  As he says, the angel didn't come to intervene with Abraham and Isaac until the last possible second.  I admire my pillar of strength for his faith and hope.  I feel guilty that my hope is so weak.  I blame it on the mom in me who is trying to be prepared.  I worry for my sweet boy and the pain and suffering he is and will endure.  It breaks my heart.  I worry for my other children who will be confused and heartbroken to lose their brother.  I worry how in the world we will ever be able to do this.  But, then I remember I don't have to worry about any of this.  Heavenly Father is asking us to do this and He will take care of Mitchell and all of us.  He has a plan.  He will never leave us and He will embrace my sweet angel boy in His arms.  

Handsome father and his sons. 

Our pup Tucker came for a visit!  

We enjoy every moment, especially the happy ones!

 Grateful.

Our Little Hero

These pictures are from the Selah Days Parade in the middle of May.  It was an idea I had for several months, but when it came down to it, I wasn't sure we'd pull it off.  We have been so busy and exhausted, but thanks to the help of our family it all worked out and Mitchell had a blast!  It was so fun to see him so excited, especially since we hadn't seen that in ages.  

Last update I mentioned we began a medication in hopes of diminishing Mitchell's aggressive behaviors.  We've been on it at least a month and unfortunately it has provided absolutely NO benefits and all the bad side effects.  His aggression has actually been worse and has turned into self-inflicting harm, which to me is very scary.  It's physically exhausting to keep him from his brother and sister so he cannot hurt them, but it's impossible to watch him all day so he doesn't seriously hurt himself.  I just have no clue what we should be doing.  We're trying to get into a psychiatrist here in town.  

Our next MRI is Fri, June 22.  I don't think we're nervous, because we are completely accepting of the Lord's will either way.  It has just been so difficult because Mitchell has not been himself for a long time.  He is so miserable and tortured and it is so heartbreaking.  We love out little boy so incredibly much and just pray that what is best for him will happen.  

Mid May 2012

The first two are facebook posts...


Monday, May 14th: Quarterly MRI
Just have a second to update, but it was as we expected to hear. Two spots showed up away from the origin of the tumor. It's a 50/50 chance it could be new growth OR pseudo-growth. We knew coming off the avastin, which reduced inflammation, that we could have some tricky scans. It could be that those spots absorbed the contrast more. The origin of the tumor stayed the same, which is usually the most potent and reoccurring location. Also, inflammation is non-existent, which usually goes hand in hand with regrowth. Tough to say. They'll discuss at tumor board and we'll have a follow up MRI in 6 weeks. Neuro-psych evaluations tomorrow and possibly neurology.

Wednesday, May 16th: After seeing neurologist

Just finished our Seattle trips. Neuro-psych was fine yesterday. Mitchell was able to get through all of the cognitive exams and we'll hear back on the results in a few weeks. 

We drove back this morning to meet with the neurologist and he prescribed risperidone for us. We weren't really expecting to start off with such a "heavy hitter" of a medicine, but they are starting him at a low dosage. The doctor said that medication management is a trial and error process, but he felt this particular medicine could really help the range of symptoms Mitchell is experiencing. The thought is that whatever the cause (biopsy, radiation, chemo) the areas of the brain that control impulsivity have been interrupted. The goal of the medicine is to slow the impulsivity so that he has a chance to process thoughts before acting out. We are really hoping this well help. Mitchell is very frustrated that he cannot control his anger. He wants to be happy and have fun with others so badly. We want our little sweet Mitchell back on a full-time basis.

Tumor board met today and they are leaning towards thinking it is the avastin wearing off causing an increase in the imaging enhancement. The radiologist that works with the tumor board compared Mitchell's original growth from Apr 2010-Nov. 2010 and this looks nothing like that. Originally the enhancement (or brightness of the tumor on the scans) was the same and the flare (inflammation/size of tumor) changed/grew. This time the enhancement is brighter, but the flare stayed the same. Hopefully that makes sense. In sum, we have to wait for a new MRI scan (June 22nd), but members of the tumor board think that the "new growths" are more likely the results of treatment and not the tumor actually growing. That is what we are hoping for (as the tumor growing would be very very bad news). So, that is encouraging. All in all, despite what the board says or doesn't say, we remain optimistic. Mitchell has beaten the odds so far and there's no reason to stop believing.


UPDATE May 20th, 2012: On medication 4 days
We aren't noticing too many changes yet.  If I had to decide, I'd say his behavior is worse--he's done some pretty strange and yucky things the past few days.  He does seem to be even groggier and more tired if that's even possible.  The dr said it might take a week to see effects, so we're crossing our fingers.  His quality of life is terrible and he often cries saying, "I don't want to be angry!/Sad!"  It is so heartbreaking.  We're trying to not look into things too much, but he does seem to be dragging his left foot a little more and his eyes are not opening as wide anymore (his original symptom of the tumor).  We honestly try not to think about the what ifs and analyze what's happening.  All we can really do is enjoy the good moments however sparse they may be.  We just want this little guy to feel peace.  

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.