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.