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.

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.