Mitchell's 5th Birthday

Mitchell's 5th Birthday

Mitchell's 4th Birthday

Mitchell's 4th Birthday
February 2011
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Nov 2010

Mitchell's 3rd Birthday

Mitchell's 3rd Birthday
Feb 2010

Saturday, May 5, 2012

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 helps make the bad memories go away. 

 Beach in CA

 Love this picture from Space Mountain


Saimi said...

Oh Amy you're family is truly remarkable and such an example to me. I can't even imagine what Mitchell must be feeling at times, perhaps he doesn't either. It is sad.

I love his smile and that picture of him with his sister is absolutely precious!!

mtnhomequilter said...

Amy this is DanaKae again. Mtnhomequilter is just my google acct name. I understand so well what you're going thru. The physical exhaustion is overwhelming, but the emotional exhaustion is just as exhausting and is often forgotten. I can't tell you how many times well meaning people have come up to me and said how they admire my strength and fortitude to endure this trial. I want so badly to just say, you know what, I have days that I don't want to even get out of bed, that I want my old life back so badly it hurts. That there are days that I just can't take it anymore & don't feel strong anymore. Or that I will scream if I have to jump thru one more hoop to make sure my child's next drs appt is covered by insurance. Unless someone has cared for my son overnight for several days, and gets a good idea of what I go thru on a daily basis, they just don't have a clue. And thankfully I have a couple good friends who love my son just as he is and will give me & my husband the break we need for an overnite date. They always wonder how I do it each day though. I've explained that what they see as abnormal is our new normal and has been for the last 7 years. Its just what we do because we agreed to be a parent to whatever child God sent us. I understand the feelings of who is this child in my house? It has taken years to come to terms with the fact that my son may never be the same child he once was. I had to grieve for the son I lost to this terrible disease they call cancer. And on the same hand I have to praise God that He didn't take him away from me, that he trusted me enough to finish the work my son is here to do. You will definately have days of never ending fighting, and days of pure bliss. Take those pictures of good days. It really does help to block out the bad. One thing we've done since the get go, was be very involved with our local cancer society. My son has gone to their kids camp for the last 7 yrs, and 4 yrs ago our daughter was able to start going to a siblings camp yearly too. the kids camp was a Godsend b/c it was a full 6 days of vacation for you as a parent. You didn't have to think about caring for that child for 6 blissful days! You could concentrate on your other kids or yourself and recharge your batteries & not feel guilty about doing it. Another thing we've been able to do is go to Family Camp. It's a retreat in the mtns for the whole family for 3 days & it's just nice to have your meals made all day and all you have to worry about is what kind of fun are we going to have today? And all of the camps are free of charge. We only pay gas to drive 2 hrs away to sun valley for the family camp. Money well spent to us! And it was helpful to be able to talk to other parents who understand the upheaval that cancer is in ones life, they understand so well even if it wasn't the same cancer as your child has. All one cancer family. As far as the amygdalas being the culprit for the outbursts, its very possible, as well as the chemo & radiation. we are in the throws of long term side effects from those awful poisons. All you can do is listen to the advice from the drs you are getting & weed thru it and decide what's best for your child. This definately takes prayer and faith, but don't discount your mother's instinct when it comes to your child. You will still know what's best for him. My prayers will always be for your family. I will always be an ear to hear and a shoulder to cry on, all you have to do is ask.