Benjamin's Bumps: May 2012

Tuesday, May 29, 2012

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

Thursday, May 10, 2012

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!

About LCH and Benj

LCH, Langerhans Cell Histiocytosis, is a rare blood disorder that is thought to be like cancer and an auto-immune disorder. It can spread like cancer and is typically treated like cancer with chemotherapy. Histiocytes are a type of white blood cell that over produce in particular areas of the body and then can be problematic in various organs. It can manifest itself in different organs of the body, some being more high risk than others. Benjamin's LCH is in his bones and lungs which categorizes him as having a "moderate" case of LCH. In October of 2010 at the age of eight months, we noticed Benjamin's swollen eye was not improving. We thought it was the result of a fall. However, after visiting our primary care doctor and a CT scan of his head was done, bone lesions (tumors/"bumps!") on his skull were found, including the one under his eye, and we were told he had this serious condition. Benjamin underwent 52 weeks of chemotherapy (Vinblastine/Prednisone) afterwhich he was declared clear and free of LCH in November 2011. We enjoyed two-and-a-half months of health and wellness until we discovered some pain in his side. On January 25, 2012, his second birthday, more bone lesions were discovered, including one on his right rib cage where he had been having the pain! He had 7 or 8 new lesions in his body- three on his ribs, three or four on the parietal bone of his skull, and one on his third left toe. His second-round of chemotherapy included Ara-C and Vincristine, along with Prednisone about every four weeks for four days consecutively each time. This concluded after week 32 (about 7 1/2 months), when his scans were once again clear and he was declared in remission again in October of 2012. In December of 2012, a third recurrence was discovered with two more bone lesions. Benjamin took an anti-inflammatory for one year without any major recurrences. He then had his second port removed in December 2013 and has since had no active disease. We feel so thankful that he is a happy and a healthy little guy! We love having him in our home and part of our family. This disease has brought some new meaning to our lives and we hope we can help someone by sharing it with this blog. Here is his story . . .