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

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

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!

Awaiting Follow-up Results

We had a great big party in October to celebrate!  With a huge, 18-foot blow-up slide, and lots of friends, and cake, we had an enjoyable day!  Benjamin had a fun time and even wore himself out to the point that he had to take a little break in the middle of the party.  Quietly he went upstairs and turned himself on a t.v. show and fell asleep, unbeknownst to the rest of us! We were so thankful to all of the friends and family that have supported us throughout this challenging time.  It was just a great day to celebrate with those we love, and appreciate a big triumph in the the life of our two-and-a-half-year-old!

Now, this week we await results from his three month follow-up appointment on Wednesday.  We pray for good news, but have faith regardless of the outcome!  Possibly, Dr. F will recommend that his port be removed before Christmas if we have good results (meaning there will be no LCH found).

Thanks for your continued inquiries!  We love all of you!

The x-ray table, which Benjamin has a love-hate relationship with! 

 He now seems to feel quite at home there!

Time to Have a Party!

September 2012

This time we really have a reason to celebrate!  We are going to have a party to rejoice in Benjamin's health and life with us!  He finished his second round of chemotherapy and is once again in remission from his LCH.  The blessings are numerous and we feel grateful!

Of course, we had to have a last trial before the end when Benjamin was hospitalized during his last chemotherapy treatment.  His fever from the Ara-C was so high and his blood pressure was alarmingly low, which was a cause to almost admit him to the PICU.  Thankfully, he was okay otherwise, so the ICS unit was sufficient for a day.  He was just miserable with vomiting and a high fever, which thankfully only lasted 1-2 days.  Poor little guy.  The hard times have really helped us appreciate the good times!  SO LET'S CELEBRATE!!!!!

We also now begin the waiting game to see if this LCH monster will return again.  His next follow-up appointment will be the week before Christmas.  If all is well, then he will have his port removed that week!  We continue to pray . . . and for now, we will just be thankful and celebrate!!!!

Round Two Almost Complete!

  

On August 2nd, Benjamin had follow-up scans and his seventh chemotherapy treament of round two.  What a blessing it was to see that there were NO MORE BONE LESIONS, and no new lesions either!  The chemotherapy has been effective once again and we feel so blessed.  We are so thankful to our Father in Heaven who has blessed Benjamin in this way.  All of our praise and thanks we owe to Him and that this is His will at this time. 

One more treatment for round two will begin next Wednesday, the 29th.  It is a bitter sweet feeling knowing that we still have one more treatment to endure.  Because he has been so sick the day or two following his first dose, it is a dreadful emotion thinking of fevers, possible vomiting, irritability and such.  However, we are so thankful that we only have one more treatment knowing that we are at the end again! 

Now the plan is to follow-up in four weeks after his last treatment with scans.  If everything is clear, then we will just wait for a couple of more months before we follow-up and remove his port.   And speaking of his port, we aren't so anxious this time to have his port removed because we dread having to replace it AGAIN.  So Dr. F said that we should hold off a little while but perhaps we can have it removed before the end of the year for our insurance purposes, which would be helpful!  Maybe a Christmas present for our little buddy?

Chances for recurrence this time?  We are not sure.  Still at least 20-30%, but with Doug's probability knowledge from college, he says chances are higher knowing that we have already been in that 20-30% category!  So we just hope and pray that Benjamin stays clear and free of LCH, but if he has another recurrence, WE WALK BY FAITH!

Oh, and I forgot to mention that he suddenly lost most of his fingernails and toenails a few weeks ago!  At least it wasn't his hair!

Thanks for all of your continued support, faith, and prayers for Benjamin!

We recently spent a week at a cabin in Bear Lake with my family.  Daddy flew Benjamin up to the top of this mantle, and he thought he was pretty neat! 

Mt. Naomi Berry Farms, in Hyde Park, Utah, invited HopeKids to come and pick berries there.  Since we were nearby in Bear Lake, we had a fun adventure eating and picking!  Benjamin did more eating that picking!  Who could blame him?  They were delicious!

Papa and Nana got to join us at the berry farm too!  We got so many blackberries that I even made blackberry jam- my first jam-making experience!  It was a new and fun time!

Monkey Grins!

 

 Thanks to Sydney in Texas and her parents, we received a surprise package in the mail this week!  A "Monkey Grin" box full of six monkeys and six lollies, one for each of our six kids perfectly fitting their gender, showed up at our doorstep on Tuesday!  This really did put a smile on each of our kids' faces (and I think some tears attempted to be concealed as well). 

We have constantly been praying for the comfort of little six-year-old, Sydney who, only two weeks previous, lost her three-year-old brother, Jenson, to LCH.  WE were suppose to be sending THEM a happy package, not THEM sending US one.  Needless to say, we were so touched!  Each of our children were so thankful and carried their monkeys around most of the week!  "Monkey Grins" were inspired by Jenson who apparently wanted other "histio warriors" to have monkeys.  So Jenson, Sydney, and their parents decided to put into action his great plan!  I have learned from reading Jenson's mom's blog, that those family and friends that attended Jenson's funeral brought monkeys to donate!  What a positive act of charity in such difficult circumstances.  We have been deeply touched by their family!

Now, we have reality to face as we consider another chemo week this week for Benjamin.  Honestly, I am dreading it again.  But I remind myself that we just need to endure for four or five days and then the poor little guy will be back to his normal self.  He makes us all laugh as he triumphantly shoots the basketball in the net and yells, "Oh yah!"  We think we have a future Jimmer on our hands- or at least his almost fourteen-year-old brother, Thomas, would like to think so, knowing he has taught him everything he knows about the game!  He is an amazing two-year-old ball player!  We need some video for future use on ESPN!  (Just kidding of course!)

I am also thankful for a day off tomorrow and a day together as a family!  This Memorial Day we will honor those family and friends who have passed on before us, and particularly this year we will continue to remember Jenson and his family as they grieve but have given us hope and "Monkey Grins!" These acts of kindness help us to continue to go forward! Thank you to Histio Angel Jenson!  Little buddy, you and your good family have inspired us all!

I hope you all have a great week! 

Angela