Closing This Life Chapter

Benjamin is our Superman!!!  Two years post chemotherapy and no active LCH as of yesterday gives us an opportunity to celebrate once again!  We feel so blessed and grateful that this boy is healthy and well! He was so brave yesterday as he had to get his blood drawn (not routine for him because he previously had it drawn through his port, which was a much easier route). But everything was just fine!  After our traditional lunch with dad, we left the hospital with prizes in hand, and smiles on our faces planning for another six months before we return again!  

We only hope that we are done with this yucky disease for good!  Still with chances for recurrence, especially before the age of 10, we pray that Benjamin will continue to fare well with good health.  Now that it has been more than two years since his last chemotherapy treatment, we are feeling safer with "normal" health.  It seems okay to mentally close this life chapter, including this blog, and move forward with our focus for Benjamin, for our family, and even for myself. 

Benjamin and "Wofie" in the new entrance to Primary Children's.

After his skeletal survey yesterday, the radiology tech asked Benjamin what he wanted to take a picture of. She suggested his pants would be fun and he chose his new toy dragon which he had just been given in the lab.  This is a picture of that x-ray!

Benjamin and his buddy Dad were playing while waiting in the exam room for Dr. F.  Benjamin was teasing Dad about how Dad likes to dress up like a princess!  It was funny to all of us because usually that is what Dad teases Benjamin about.

Still waiting in the exam room and taking selfies!

Benjamin with our hero, Dr. F!  He is such a great doctor. We are so blessed that we were assigned to him!  He never rushes our time and makes an effort to answer all of our questions.  He always seems confident in his decisions regarding Benjamin's care.  We are thankful for his professionalism and goodness!

When we returned home after our long hospital day yesterday, I asked Benjamin how he wanted to celebrate his good news this time.  He replied, "Let's make 'no-bake cookies!'"  So we did, just the two of us!

So as I close this blog, there are a few points I want to make. 

1- Blessings come from trials! As I reflect back upon this whole experience, I am reminded of so much good that has come from this trial.  Despite the fear, sickness, bone lesions, surgeries, fevers, chemotherapy, ER visits, scans, doctors, steroids, sleepless nights, medical bills, and much more challenging things, we have been blessed with faith, love, kindness, friends, new friends, dinners, babysitting, treats, more faith, more friends, more kindness, and much more!  We have learned to trust in God more than ever, and when we do that, peace fills our hearts!  Peace is a priceless gift.   Christ is truly the giver of peace, the Prince of Peace.  I am so thankful to know that He can provide that to me at all times if I seek it.

Doug's favorite scripture is John 14:27.  "Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you.  Let not your heart be troubled, neither let it be afraid."  May we all have peace in our trials, and learn the lessons we are intended to grow from in this life!  

2- Having good health is vital to experiencing life to the fullest and we should never take our health for granted!  It seems that I often take my own good health and the good health of my family for granted.  Because Benjamin's health has been compromised these past few years, I have often felt deep gratitude for his good health.  But I must remind myself how vulnerable we all are to sickness, or accidents, or any infirmity possible!  We must not take life for granted!  Each one of my family members is so precious to me. In my prayers each day, I pray for the health of my family.  I will continue to do so, knowing that it is never something to take for granted!  And each night, I will thank my Father in Heaven for blessing us with life on this earth and physical strength so that we can live life to the fullest!

3- People have blessed our lives abundantly and taught us about true charity!  To list all of the people who have shown us the meaning of charity during Benjamin's disease, would be no small task!  But I would be amiss to neglect at least a general list.  

How thankful we are for 1) our family members who have prayed for Benjamin, brought us dinners, babysat, celebrated with us, and so much more!  My mom, specifically, for her listening ear, her thoughtful texts, endless babysitting, dinners, gifts, and much much more!  

2) Our LDS ward family is next on my list!  Our Relief Society Presidents were especially kind and concerned as they arranged for meals, rides for our kids, babysitting, dedicated visiting teachers, homemade bread, texts and phone calls to check in, and much much more!  My visiting teachers were truly dedicated to visit, bring dinners, and also lend a listening ear!  Our home teachers were helpful with visits, dinners, and more than a couple of priesthood blessings! And since Doug was the bishop of our ward in the beginning, our Stake President, President Homer, and other stake friends were so thoughtful during this hard time, with phone calls, visits, treats, and other kind acts of service. 

 3) The hospital staff was truly outstanding!  After being reminded of all of the sincerity to Benjamin yesterday, the techs, the aids, and the secretaries were just awesome! (Sandy, the secretary in the Hem/Onc Clinic always calls us by name and remembers Benjamin.  For one example, the day he was diagnosed, she couldn't get a hold of us to get him scheduled for an emergency visit for the next day, so she called us from her home late that evening!) The nurses, and of course, the doctors, particularly Dr. F were particular heroes in our minds!  It is so hard to limit my writing as I mention all of these great people!  I would love to write about specific things each of these great people have done for us!  

 4) Lastly, we are so grateful for all of our friends who are truly that- friends!  Thanks to you all for your caring and concern.  Each time I would see most any of you, you would ask about Benjamin and how he was doing.  So often you would offer to help wherever you could!  Sometimes, we all think that we or others verbalize that offer with hollow intent, but I have seen time and time again, those offers of, "Let me know if I can help," come to fruition with acts of service and kindness!  Your hearts are filled with charity which in turn, has taught me how to give charity myself!

As I close this life chapter with Benjamin's LCH, (hopefully for good, but with awareness that a possibility of recurrence can happen anytime), I hope that my efforts to serve others will, in some way, reflect my gratitude for all that we and I have been given during this time of our lives, and especially to my Heavenly Father who has given the most important and abundant blessings to us! I love you all, I love my family, I love my little buddy, Benjamin, and I love my Heavenly Father!  I will do all that I can to give all that I have as often as I can to show my thanks, praise, and love. And I hope I can teach my children, Benjamin included, to do the same.

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

Steroids and Terrible Two's Don't Mix!

 Last Wednesday, clinic and chemo day, was a good day!  Dr. F said that we might only have to do 8 cycles instead of the expected 9 due to the fact that Benjamin is currently doing well and responding to this treatment.  Or he might spread out the treatments- rather than doing them every four weeks, maybe every five or six to the end of the 32 weeks.  We will see!  But this means that we are most likely half done with Round 2 (and hopefully forever!)! 

So Wednesday  (May 1st) was a good day especially because Benjamin was finally healthy otherwise.  Somehow I forgot about the 50% chance that he had of getting a fever from the Ara-C.  Sure enough, the next morning, Thursday, he awoke with a 102 fever and was almost 104 on Friday.  We spent Thursday and Friday in the clinic for IV antibiotics, blood cultures, and IV fluids.  He finally seemed to be better on Saturday.  We held the dreaded steroids during those two days but he still got the chemo each day.  Of all of those days though, I think we would all say that the fever was better than the steroids! Next time Dr. F jokingly said we should just make a fever appointment for the day after knowing he will inevitably get a fever from the Ara-C! We will certainly hope that he doesn't!

Steroids and the terrible-two's don't mix!  He becomes so irritable and difficult.  He is just not himself during that time.  He often cries for long periods too and has a difficult time relaxing.  Both Doug and I decided that for some reason, this time around was the worst steroid pulse for poor Benjamin.  We endured the Prednisone until Monday morning and finally he had a smile on his face just in time to go to bed Monday night!  No more chemo and Predisone for another three weeks!!!!  Thank goodness!  It seems harder to go back to chemo each time.  We can't decide if it is because we have had a longer break in between treatments and Benjamin seems healthy during those times, or if we have just been doing this so long that we are feeling a little tired of the whole routine.  I just try to remind myself that it could be so much worse.

Speaking of things being worse, I want to share my quick thoughts about little Jenson in Texas.

I found Jenson's blog from my histio Facebook group.  Jenson is a three-year-old with LCH, like Benjamin.  He has been fighting the disease since he was nine-months old, almost the exact age of Benjamin when he was diagnosed.  While Jenson has been spending his last moments hanging on to life, his only sibling received a concussion at school last week and was admitted to the same hospital Jenson is in.  I prayed that she, Sydney, could be released from her hospital bed so that she and her parents could spend their last moments with Jenson. Jenson did lost his battle with Histiocytosis on Tuesday of this week and they were able to be there with him, thankfully!  My heart aches for Sydney, and her good Christian mom and dad.  I have been deeply touched by their story.  Although it is so sad, you can feel of their faith by reading their thoughts and experiences.  They know that Jenson went to heaven, a better place for him, without pain and suffering!  I feel a greater desire to appreciate my little family a little more!  So hug your children, parents, family, and friends just one extra time today in honor of little Jenson!

All of this makes our five-year-old, Maile's new broken elbow, and Benjamin's disease, and any other trial I am facing seem so insignificant!  We go forward with faith and know that God will provide in His way and in His time, and life somehow seems to work out just fine!

Here is the link to Jenson's blog:  http://www.jensonsjourney.blogspot.com/

HAVE A WONDERFUL DAY!

Angela

Our "beautiful" little boy!  Oh, how he wants to be just like his big sisters!



Benjamin and Maile!



Moving Right Along!

Me and my buddy!

He loves making silly faces and has learned that he gets a lot of attention for them!

His port has to be accessed (with the needle and IV tubing connected) for four straight days for chemo treatments.

Mom giving chemo at home. The first day of chemo he gets in the clinic and the following three days we do at home. It is a 30 minute process with someone, usually daddy, holding Benjamin. He is a good sport!

I apologize that it has taken a while since I have updated. Benjamin is doing great! At our last chemo appointment, he had a skeletal survey (full body x-rays) done to check his progress. We received great news, that all of his bone lesions are "almost completely healed," as stated by the Radiologist, and no new lesions found! We are thankful for this news and feel fortunate that Benjamin is having success on this chemo regimen. However, we know that the real test comes when he completes this course of chemotherapy in September/October.

As for the effects of Ara-C and Vincristine (his chemotherapy drugs), he does okay with them. It is evident that these drugs are stronger than his first-round drugs were. He appears more pale, acts a little more irritable, and just wants to be held during the five days of treatment, and is just not a happy little guy. He has occasional jaw pain (a normal side effect), and still has to tolerate the effects of the dreaded Prednisone! All in all though, he seems healthy and well which we feel thankful for. We are also very thankful that his hair hasn't thinned yet. Dr. F. said that it probably would have by now if it is going to. So . . . WOW!!!! That is a huge blessing! I try to remind myself of that when he hands me a comb and asks me to "get hair done" every morning. I feel thankful for his hair!

I want to post a link to my favorite LDS General Conference talk again from this last Conference. (Actually, I had many favorites!) Elder Ronald A. Rasband of the Quorum of the Seventy spoke about his grandson who was born with a rare chromosomal disorder and spent a lot of time in the NICU at Primary Children's Medical Center (our second home- not the NICU of course, but across the hallway in the Hem/Onc Clinic). It was an inspiring talk!

He quoted Elder Russell M. Nelson saying,

“For reasons usually unknown, some people are born with physical limitations. Specific parts of the body may be abnormal. Regulatory systems may be out of balance. And all of our bodies are subject to disease and death. Nevertheless, the gift of a physical body is priceless. …
“A perfect body is not required to achieve a divine destiny. In fact, some of the sweetest spirits are housed in frail frames. …
“Eventually the time will come when each ‘spirit and … body shall be reunited again in … perfect form; both limb and joint shall be restored to its proper frame’ (Alma 11:43). Then, thanks to the Atonement of Jesus Christ, we can become perfected in Him."

I know that is true! I am thankful to know that! I am thankful for the Atonement of Christ and know that we can all be perfected through Him one day, including little children who seem to suffer so greatly at times on this earth, like my little Benjamin. I am thankful, we are thankful . . .

Here is the link to that talk:

Elder Ronald A. Rasband, "Special Lessons", April 2012 LDS General Conference

Thanks to you all for inquiring about Benjamin. You are all so very thoughtful! What a blessing it is to have friends. I will try to post a little more often. Have a wonderful day!!!!