Thursday, September 12, 2013

No News is Good News!

Is no news good news?  Knowing I haven't posted since April, things must be okay in my own mind.  And from the outside looking in, I would agree with that after an external examination of my own mind! But these mind games aren't fun and anxiety overcomes me off and on.  I think that I worry unnecessarily.  At Benjamin's last appointment in June, his skull still had three bone lesions but two were improved from April's scans and one had grown in size.  We have chosen not to have his port removed just yet.  But this news from our last visit was still not enough cause for concern for Dr. F.  We have moved forward on the same plan- the daily anti-inflammatory and follow-up in three months.  That three months is up next week when we will return to the hospital for another skeletal survey and oncology clinic appointment.  This is a record for Benjamin!  We haven't ever made it long enough with good health to wait three months.  Blessings are abundant and how wonderful it has been to enjoy Benjamin's wellness this past YEAR!  I can't believe it has been a year since his last chemo treatment. Perhaps it is finally time to remove his port.

Next Wednesday is the big day and we will know what is happening in that little, active body of his!  We continually pray for his health.  Maile, our six-year-old, never lets Benjamin's health elude her prayers!  She is very thoughtful and has the simple faith of a child.  How thankful I am for that too!

Benjamin's bumpy head doesn't let me relax, but when I pray and follow the example of faith from our little girl, my heart and mind are overcome with calmness which is difficult to express.  I am unsure how it works, but I know it does, as I have expressed before!  I am thankful for that knowledge and know God knows more than me!  So I remind myself, that no news (from the inside of Benjamin's body) is good news for now, and I never need to worry with my Father in Heaven on our side.

I will post "the news" from next week's appointment as soon as I can!

Angela

Wednesday, April 17, 2013

Second Port Removal!





From my last post, I wrote of Benjamin's third LCH recurrence in December.  He had two bone lesions (tumors), one on the top of his skull and one on his right femur.  An anti-inflammantory, indomethacin, was prescribed which he took for eight weeks.  Then we followed-up in Oncology with another skeletal survey (full body x-rays) which showed that the two lesions were the same.  They were not better, but they hadn't magnified and more lesions hadn't manifested.  As a result, he stayed on the same medication for eight more weeks. 

Today, after eight weeks, we learned that the two bone lesions have decreased in size and there are no new lesions!  We are thrilled that this probably is a sign that this medication is working (at least for now)!  The new plan includes staying on the indomethacin and follow-up in three months.  For now, we will have Benjamin's IV port removed and hope that we never have to replace it again!  The surgery will likely be scheduled for next week sometime!

So it is a good day!  We feel so blessed and happy! When speaking of going to the hospital and having his port accessed, he tells us, "I be brave and strong. Port no owies!"  He really is brave and strong!  He has amazed me how tough and resilient he has handled all of his disease!  I know that one day we will look back on all of this with gratitude for the blessings and the learning opportunity it has been.  However, this trial doesn't feel over to me and I think we will continue to fight this for many years to come, but it would be wonderful if we could call this the end!  Our lives are in God's hands, and whatever He chooses, we will do our best to accept.  For now, we are so thankful for the relief of today's results and pray it stays this way forever!

As we were on our way home from the hospital today, we stopped at a home improvement store right near the Salt Lake International Airport.  Our car was parked directly under the flight path of large passenger airplanes, one of Benjamin's favorite things.  So instead of racing home for a nap, we decided to sit and watch!  Every two to three minutes, a large jumbo jet would fly right over our heads!  He was awestruck!  It was a moment I cherished with my little boy!  I sat their filled with gratitude and just listened to some of my favorite music.  One song in particular is called, "All My Days" by Hilary Weeks.  I will quote the words as they were so fitting today.


All My Days

Love
And Grace
Brought Him here
A world to save
He suffered all
He felt our pain
He knew it was the only way

He
Understands
When I'm unsure
He knows the plan
And when I'm tired
Losing my way
He picks me up and gives me strenth
And I will praise Him

All my days
All my days
May my voice ring out in praise
For Him who died
To give me life
I will glory in His name
All my days

He sends His love
So patiently
He teaches me
Step by step
Leading me home
It's the greatest love I've ever known
And I will praise Him

All my days
All my days
May my voice ring out in praise
For Him who died
To give me life
I will glory in His name
All my days

And when I see Him again
I will bow down and say
 All my days
All my days
May my voice ring out in praise
For Him who died
To give me life
I will glory in His name
All my days








Tuesday, January 15, 2013

Third Recurrence!

I was reading scriptures yesterday when I came across one which speaks of blessings for "valiantly enduring."  Those are the blessings I want but sometimes life and trials get tiring just trying to endure each day!  I believe that that is where faith comes in.  And faith is not always easy, I know.  But I think too, that God knows our faith and recognizes when we are giving all we can give in life, and in turn, blesses us beyond what we can comprehend (although not always immediately recognizeable). Also, sometimes "all that we have" seems like very little to us, but we must exercise even a "particle of faith,"  and even when we "no more than desire to believe" (see Alma 32:37), we can be touched by God's hand.  He can and will reassure us of his love whenever we need it.  I experienced much fear and worry going into Benjamin's last appointment and have once again learned to not doubt my Heavenly Father.

In early December, about 10 weeks following Benjamin's last chemotherapy treatment, we took Benjamin back to the hospital for his first (of round 2)  post-chemo follow-up.  He had another skeletal survey and two new bone lesions were found.  One being on the back/top of his skull, and the other on his right femur.  After noticing this on his x-ray, the skull lesion was easily palpable on his head.  For some reason, I was not a bit surprised about these new tumors.  However, I felt very discouraged and tired of this dumb disease.

Dr. F had learned recently of a new study that has proven in mild LCH, an anti-inflammatory drug CAN be effective.  We will try this anti-inflammatory medication for eight weeks and then will check the progress.  His next appointment is February 6th and once again, that will be a nerve-racking day, unless. . . of course, we just have faith. 

Faith is that magic word that seems to be the answer to all things in this life!  Faith is the opposite of fear and I know that is true because when I choose to have faith instead of fear, I am much more calm.  I recognize that my trials are in God's hands!  I know that it is not always easy!  Trust me, I have had more fear in life the last two years, than I ever have in my previous thirty-six years. 

However, after the priesthood blessing Benjamin received by his dad and grandpas recently and many, many prayers, I feel much more calm.  I am reminded that I can cast my burdens upon the Lord, my Savior, Jesus Christ.  HE suffered for me and my family and especially in this trial, he suffered for our little Benjamin.  Christ has felt every pain we each have experienced.  That gives me so much comfort. He will be by my side and by the side of my little buddy during these next few weeks and always.  And to know that He will not give me or anyone else anything in this life that we can not handle, is reassuring.  He has always been by my side and has given me help (family, friends, scriptures, priesthood blessing, prayers, etc.) when I have needed it most, especially with Benjamin and his disease!  This is when "valiantly enduring" means something.  I will do my best to even "desire to believe," hang on with faith, even in the difficult moments, and valiantly endure! 

Thanks again everyone for your kind gestures and prayers! 





This is the cake from his 2nd round of chemtherapy celebration!


While everyone else was in the backyard celebrating this little guy, he quietly exited the party and went upstairs, turned on the t.v. and was sound asleep when we found him!  The slide was so much fun!