All Clear and Good to Go!

Final scan day- a day to celebrate!!!! 11/10/11

Let's just play outside and enjoy life for a small moment!

Before Chemotherapy: October 2010 This is a great view of the bone lesion under his eye. It was swelling so quickly that it seemed that it would have affected his vision soon. The bone lesions over his right eye brow are visible in this picture too.


Also October 2010. This was taken just after the biopsy of the lesion on his forehead.

After Chemotherapy: September 2011! The forehead bone lesion is still a little noticeable but may never be invisible unless he "grows into it." (The scrape on his left side of his forehead was from a fall on the cement, a normal toddler thing to do!)
WOW!!! We are grateful for the chemotherapy medications!

Today, November 19, 2011!

Benjamin with our friend and neighbor, Hunter. We got to attend Hunter's Make-A-Wish follow-up party this afternoon! Hunter and his family got to see a Rascal Flats concert in Florida recently for his Wish. He was diagnosed with a brain tumor in June of 2010, just months before Benjamin was diagnosed with his LCH. We have felt so appreciative of the bond we have had with Hunter's family!

Friday, 11-11-11!!! A good day for Benjamin- port removal surgery!

He did great through the twenty minute surgery, but didn't want to wake up afterward!

11-11-11

Just waiting for surgery and trying to distract the hungry little guy!

Daddy is so much fun! He was "speeding" down this surgery hallway with Benjamin in the wheelchair. Daddy is the best!

11-11-11, Still waiting for surgery and watching the fishies in the fish tank!

November 10, 2011, scan day. Benjamin and all of the Park cousins

My sister-in-law, Christine, said she was going to bring us dinner

and instead they had a big surprise party planned for us! It was so special to celebrate our good news, especially with our family. They are wonderful!!!! Thank you to the Parks!

Short version of the last scan day story:

*Thursday, November 10th: Benjamin's skeletal survey showed no bone lesions or any other problems! Head CT, the same, and Chest CT, the same!!!! The mass in his chest is gone and the lung nodules are gone as well. ALL DONE with chemotherapy (unless we have a recurrence)!

*Friday, November 11th: Surgery was done to have his IV port removed! All went well and we were so very excited! Benjamin did great! Now we ask him where his port is, and he points to the sight and we tell him, "All gone!" I think he gets it!

*We will follow-up in three months (February) and then every three months for the next year. They will continue to follow him until he is six or seven, unless he has a recurrence.

WE HAVE SO MANY REASONS TO BE THANKFUL!!!!

Long version of the scan day story: Yay!!!!!!! Last Thursday, November 10th, was Benjamin's scan day and what a great day it turned out to be! Here's the story . . .

After having his port accessed, we learned that he would have to have an IV in addition because they won't put the dye for the chest CT in his port anymore. (They have had too many problems doing so.) The positive side to this is that Benjamin got to choose a toy out of a toy chest they had and so he chose two bouncy balls- one, a basketball, and the other, a soccer ball! He and his daddy played ball during the long waiting room waiting times! The CT's were first. We were worried that they actually would have to sedate him this time because of his increased inability to hold still, but he did great for the CT's! Thankfully, daddy is a great bubble blower and mom a great bubble popper!

Skeletal survey (full body x-rays) was next. Usually this is the worst part, but I was allowed to stand next to Benjamin this time and that seemed to help with his anxiety for the first several pictures.

Later, we were able to see the wonder Dr. F, the world traveler. We are so happy that he is back in the country so that we could see him this time. It was especially sweet to have him present the good news! He had all the results and explained that Benjamin's LCH is all clear and gone right now! We are so excited! In fact, we are so excited that we decided this news and blessing is worth big celebration for our family and so WE ARE GOING TO DISNEYLAND!!!

When we told Dr. F. that we are going on our vacation, he wanted Benjamin to be able to have his port removed asap or wait until after our trip. We were hoping to be able to have it removed before we go to California so that we don't spend a Disneyland day in a hospital ER for another fever (which would very likely happen considering how many fevers Benj has had). Surprisingly, we were able to have the surgery scheduled for the very next day, Friday. Yes, he had his port removed Friday and all went really well! It was another long day at the hospital, but a day to be so grateful for!

It is so difficult to express the emotions we feel with this whole experience over the past year! Immense gratitude overwhelms our hearts! What a Thanksgiving we are going to have!

Lastly, I just want to share a quick thought along these lines. A couple of months ago, I received an answer to prayer(unrelated to this situation with Benjamin) that I had needed for a long time, but it wasn't the answer I necessarily wanted. I have learned much from that particular experience and have been reminded about how life is not always what we think it will be, no matter how much we plan, work, and organize for. Life takes it's turns, and sometimes not always happy, good turns, such as this trial we have had with Benjamin and his LCH. But when we put our trust in God, things will work out for the better- ALWAYS!

I experienced my answer to prayer that I didn't necessarily want while I was reading an April 2011 LDS General Conference talk by Elder D. Todd Christofferson, of the Quorum of the Twelve Apostles. The talk was about divine chastening. Suddenly while reading, it seemed that these words stood off of the page and were meant just for me! "Divine chastening has at least three purposes: (1) to persuade us to repent, (2) to refine us and sanctify us, and (3) at times to redirect our course in life to what God knows is a better path." (I added the emphasis). Once again, God has redirected my course in life to a better path! Benjamin's LCH has been trying at times and I wouldn't have chosen this trial for us, but we have learned so much. A lot of good has come from this whole experience and I wouldn't trade it for anything! I feel so thankful that God knows me and knows what is best for me! I know that He knows each of us on this earth, and He knows how to redirect our courses to better paths!!! We must have faith in Him and allow Him to do so, however, and sometimes that isn't so easy. BUT I do know, from my own experiences, that as we do this, HE WILL PROVIDE AND TAKE CARE OF US! I know it! Phillipians 4:13 states, "I can do all things through Christ which strengtheneth me." I have great faith in that scripture!

With these thoughts, I am reminded of a wonderful family that we met last Thursday while in there in the hospital. A young boy, Coulter K., (is about the same age as Benjamin) had a stroke earlier that morning and was undergoing extensive testing still to see how serious his condition was. The last we heard, they were concerned that he will have to re-learn how to talk and walk. Doug and I spoke with his two grandmothers, who coincidentally live not far from us. We have thought about him and his family a great deal this past week and have prayed for them. We will continue to pray for Coulter and ask if any of you read this, if you would pray for him too. Prayers have been everything for us in Benjamin's situation! I know they work even and maybe especially for strangers as well. We needed them so much. I am sure that they do too!

I thank you once again for bearing with my need to share! I hope you all have a wonderful Thanksgiving! As many of you have prayed for Benjamin over the past year, will you also remember with us to thank God for his mercies and blessings on behalf of Benjamin too? Thank you, thank you!

Happy Thanksgiving!

Angela

No More Chemotherapy (Forever)!

NO MORE CHEMO FOR BENJAMIN!!!!!!!!

Well, as it turned out, the clinic was ready to celebrate for Benjamin even before we were. We thought with yesterday being his last treatment, and scans scheduled in three more weeks, that we would celebrate after we had results from his scans. Apparently, with his positive progress, the clinic staff decided it was all good and well to rejoice!

So after we saw the doctor and after the nurse accessed his port and took his blood, we moved to the infusion room where we routinely get the Vinblastine (his chemo drug). That large room is like an open hospital ward where patients line up in chairs against the wall and wait while their chemo and other medications infuse. We sat down on an empty chair in the middle of the row. To our left, was a nine-year-old blonde girl interested in Benjamin. While she and her mom were waiting for her infusion, she inquired about Benjamin's age and we had a brief conversation. She was just darling and happy! To our right, was a boy, about seven or eight, who was bald from his treatments obviously and busy playing video games during his infusion. The nurse brought Benjamin's medication, and injected it (his is only a 2.3 mL injection) and they gave him a flu shot which made him cry for a moment! He was surprisingly tough however! She then de-accessed his port (removed the needle) and applied an Elmo bandaid.

Then, as I was waiting for discharge papers, I noticed a group of the staff collaborating and walking towards us with a large gift and a sign that said, "Way to go Ben!" (They call him "Ben" there and always have-which is just fine with us!) As they surrounded us, my eyes filled with tears! They then began to sing us a song. Unfortunately, I was so overcome with joy and gratitude that I have no idea what they sang. I realized this morning that I cannot recall a bit of anything they were singing! (It was so exciting however that I might just ask them to do it again the next time we go! Just kidding!) I think Benjamin was a little intimidated with that many adults around him, but excited about the fabulous present on the floor by his feet! I couldn't believe the gift they gave to him. It is a large mega blocks dump truck, big enough for Benjamin to sit on and drive around, full of blocks, a DVD movie, a Richard Scarry book, a new and cute tied doggy blanket, some bubbles, a Lowe's work apron just his size, AND a plush doggy with a real collar! Thankfully I had my camera and we got some fun pictures! This moment of celebration made the day so much fun! It is so hard to put in words the gratitude I feel for these good people at this clinic too. They have acted with so much kindness towards us since last October. I am so thankful to all of them so much! Primary Children's Hem/Onc Clinic is the best!

As we were leaving, I experienced a "tender mercy" from heaven in running into some very special people! A "famous" little boy and his mom were also there sitting in the corner of the infusion room and I felt so strongly that I had to say hi to them. I did and I am so happy that I did! Jessica, if you read this, thank you for your positive attitude and inspiring words and experience. I have thought of you and Jonah and your daughter so much over the past few months. I pray for you! I pray for Jonah! I have great faith that God will provide in His own way and in His own time- just as YOU said to ME yesterday! HE has a plan for each of us, which is much better than our own plan for ourselves! Thank you again. Our conversation meant a lot to me!

Lastly, as we left the clinic with our large gift and treasured sign in tow, we got to ring the chemotherapy bell! I can't clearly remember what the inscription said below the bell, other than I was to ring it three times as a sign of triumph and gratitude for the treatments we have received there in the clinic. I did just that. I rang the loud, echoing bell three times with peace, happiness, and sheer joy in my heart! I looked down at my little guy who was quite unaware of all that had just transpired and so proud of his new toys, and we quietly exited the clinic.

Thanks be to God for his grace, unconditional love, and abundant blessings today! We know that He is aware of us. And we are so thankful that He has chosen to bless us at this time and in this good way. This certainly will be a day that I will look back upon with fond memories forever! I hope and pray that Benjamin will be able to benefit from this year of LCH and chemotherapy in some way throughout his life and use this for the benefit of others. I am sure that he will not remember any of it and so perhaps through my documentation he can understand some of the emotions and experiences he has undergone.

Now we just hope that his scans really are good in three weeks. We don't feel too worried since they have been so great in the past and the doctors aren't too concerned. Thanks again for all of your support and love.

Angela

Tomorrow could be it!

Tomorrow could be Benjamin's last chemotherapy! We hope it will be and that all goes well! I feel so excited and feel like we are at the end. The doctors have said that three weeks following tomorrow's treatment, we will have his follow-up scans- probably a full body x-ray and a CT too. Then if they show good results, we will schedule surgery to remove his port! Yay! We are anxious to have his port removed which will prevent us from having to take him to the ER or clinic every time he gets a fever.

Speaking of fevers, we took another trip to the PCMC ER on Saturday night. Benjamin was sick with a nasty persistent cough and low-grade fever. We left home at 7:30 p.m. when his fever was high enough to require his ER visit (>101). This experience was especially miserable for the poor kid because they had to poke his port twice, then the nurse pushed around to try to get blood return. This was the first time I have heard him say, "Ow", as he cried out in pain! They finally decided his port was clotted, so they placed some medicine in it to de-clot it, and then started an IV in his foot! It was the worst time we have had in a while. I felt so bad for him, and he didn't feel well on top of being poked and prodded! After de-clotting his port, they did the usual work-up with blood work, cultures, and IV antibiotics. He also had a chest x-ray to check his lungs. All was clear, and once again, they chalked this all up to another "virus!"

I counted his fever visits and they total to about 15 or 16 since November of last year! (And $200 co-pays each time are daunting!) So it will be really nice when we can have the port removed to prevent all of this, and have his blood counts normal so he won't get so many "viruses"!!!!

All in all, we are still thankful for all of the great care we have received. The nurses are fabulous and eventhough we are tired of going to the ER, we still think the care they give there at Primary Children's is superb!

Hopefully tomorrow, we can experience the goodness once again and just hope this is our last chemotherapy (forever!!!!). Pray for Benjamin!!!!



I am having trouble uploading pictures today. I'm not sure why. Hopefully pictures to come soon.

One year ago today!

Mangum Family BYU fans with Brigham Young himself!




Benjamin, our HopeKid, and his daddy sporting our new HopeKids t-shirts!

Our first HopeKids event! We joined HopeKids in June of this year. It is a fun non-profit organization for families with a child that has a life-threatening illness. We get to do fun activities and this was their annual fundraiser and 5K race. Doug, Thomas, Maddie, and Nicholas all ran the race. Me, Macey, Maile, and Benjamin participated in the kids walk.

Benjamin, our smiley 20-month-old BYU fan!

Hello Family and Friends!

One year ago today, our Benjamin was diagnosed with LCH! Our family is celebrating today with lots of gratitude and prayers! We feel thankful that Benjamin's health is so much improved from last year and that he will soon complete his chemotherapy, assuming all continues to be well. We are grateful for his great medical care- medications, doctors, nurses, and hospital staff. The research that has been done on histiocytosis is effective and ongoing! We are thankful for the knowledge gained by scientists to know how to treat his condition (we have been told that only 15-20 years ago, they didn't know how to treat histiocytosis).

I want to especially thank you all today for your kind support, service, and friendship during this past year! We have felt your love and prayers, and as we have said before, they have meant more to us than you probably know.

Most importantly, we feel thankful to our Father in Heaven who has watched over Benjamin and taken such good care of him! We owe all of our praise and thanks to God and we know that He will continue to watch over Benjamin as we complete his treatments. His final chemotherapy treatment is scheduled two weeks from tomorrow and then three weeks following that, he will undergo more scans. Assuming we receive good results from the scans, he will then be able to have his port removed! Then the waiting game begins to see how well he does off of therapy!

Today we just feel thankful and we are celebrating his health and blessings!!!!

Thanks again to all of you and we hope you all have a wonderful day!

Angela and family

Counting Down!

Top picture: Our sleepy little guy while we were at Lagoon!

The bottom three pictures: Benjamin at the hospital. The middle two pictures were at one of our many trips to the ER for his fever work-up. He is just becoming aware of his port on his tummy. The bottom picture was a good day in the clinic just before he received his treatment. He had just discovered this hand print toy in the exam room!

We are thrilled and feel so grateful! We finished week 46 of 52 today! Only two more treatments assuming everything continues to go well! Benjamin was very happy and didn't seem to even flinch when the nurse poked him to access his port. Chemotherapy was quick and painless today and we feel thankful. Now the plan is for his next treatment again in three more weeks, which will be week 49. Then three weeks after that will be the final treatment on week 52! One whole year of chemotherapy complete! Our little warrior has really fought this LCH and I feel so proud of him! Three weeks after week 52, we will have follow-up scans to check his progress and make sure that all of his tumors and LCH is in control and gone. If so, then we can have his port removed. That will be so exciting! We will celebrate for sure. I've been thinking as to how, but have decided to not jump too far ahead just yet. We'll celebrate when we know for sure that we have reason to. I believe that we were told that the most likely time for his LCH to recurr is 6-12 months after therapy is complete. We will have follow-up clinic visits every three months for at least the first year and he will probably be followed until he is six or seven years old. We have heard from so many other Histiocytosis families and know of the likelihood of recurrence. We just pray that Benjamin stays LCH-free after October!!! As for today, we just feel thankful and really enjoy the little grin on his face!

Holiday Sickness (again)!

Top picture: taken by Maile (our 4 year-old) who stole the camera , evidence that she and Benjamin were getting into trouble! Where was mom?

Bottom picture: Our recent family vacation to Mt. Rushmore! What a great trip!

Thankfully for Benjamin the next holiday isn't until Labor Day- almost two months away, which probably means we are almost two months away from his next fever!!! Or atleast it seems that way (and we hope it will be atleast that far away). I think that Benjamin has been sick on almost every holiday and several weekends (which means we have to go to the ER and not the Hem/Onc clinic). Poor Benjamin missed our family barbeque and fascinating fireworks on the 4th of July! Instead, he and I spent the evening at the PCMC ER because of another fever! On a positive note, we missed the crowds (we beat the firework injuries apparently) and we made record time arriving home 3 hours and 45 minutes after we left! Yeah!!! So the routine work-up was quick and his blood work was fine.

Yesterday, it was apparent that he still didn't feel well. We did our best to avoid another ER visit and hung in there until this morning when he had his chemotherapy appointment. His fever seems to be subsiding and his blood work was still okaytoday. I was grateful that they still chose to give him his chemo so we don't have to return to the hospital another day.

These small inconvenient "viruses" are such a pain, and yet I feel that I really can't complain. I am learning more and more about the hardships of other "histio warriors" and feel grateful that Benjamin is pulling through this so well (so far). We pray that he continues to be strong and that his little body continues to fight, fight, fight!

Dr. Fluchel, if you read this, I want you to know how fabulous we think you are! We appreciate your knowledge, caring way, and especially your patient and listening ear! From the very first day we met you, we were thankful that you took your time listening to our concerns and answering our questions! You have been outstanding! We also have appreciated the clinic staff. I have especially appreciated Karen (who we will miss because she is leaving), Dan, Jason, Pam, and Sandy. Also, Dr. Bruggers and Dr. Wright have both been so helpful and kind.

Again, to all who care to read this, I ask for your thoughts and prayers for the other histio warriors in this world. As I have mentioned, I have met many others on the Histio Family Facebook group (almost 700 members) and learned a lot about LCH from this great "family". I also read that an 18 year-old girl lost her battle with HLH (a more severe form of LCH) last week. She's now a "histio angel!" I am still thinking of her family and pray for their comfort and peace.

Lastly, because Benjamin sadly missed fireworks on the 4th of July, we anticipate the other firework holiday here in Utah (July 24th, Pioneer Day)! We will have great fun watching Benjamin's eyes light up on the 24th and our little guy can enjoy them then! We'll be grateful that night for no fevers, and just to be with our family. Maybe for years to come, fireworks will have a new meaning for us!

Post-poning Chemotherapy

Bottom picture: Benjamin attempting to color at the activity table in the Oncology Clinic.

Top picuture: Our family at Temple Square on Easter morning! That was a wonderful day!

Benjamin has been sick again, the poor guy! He has had a fever and cold symptoms. We spent Friday evening at the PCMC ER for the routine fever work-up. Then throughout the weekend he seemed to improve. Monday morning he was still showing signs of being sick. Finally, yesterday afternoon he had a fever again. We arrived at the clinic at 1:45, just me and Benj. Once again, the usual routine was done including IV fluids infusion, which is always nice because it seems to help him perk up quicker. They discovered from a viral panel done on Friday that he does have rhinovirus again (just a simple cold virus). But this gives them a possible reason for the fever so they don't seem to worry quite so much that he could have a bacterial infection in his port.

As a result of this, his chemotherapy which was suppose to be today will be post-poned until next Wednesday. This will give him a chance to recover. However, he still has a low-grade fever right now and an awful cough. We'll see how tonight goes!

Our Histio Warrior is Winning!

Our little Benjamin is fighting his LCH! We learned today that his bone lesions on his skull are once again much improved, or "substantial reduction in size" is the description the Radiologist used in his report. The LCH spots in his lungs are non-existent. There is no evidence of the mass in his mediastinal area of his chest as well! No new lesions or problems were found- which was a worry for us. We feel so relieved and excited! Another significant blessing that I haven't mentioned before is that Dr. Fluchel told us that he is a little surprised that Benjamin doesn't have DI (Diabetes Insipidus). Because of Benjamin's lesions near his CNS (Central Nervous System- brain), he has a much higher likelihood that he would have DI. So far, Benjamin has no signs of it and we are so thankful! Feeling hopeful, we watch him constantly and pray for the best! We feel overwhelming gratitude to Heavenly Father for all of these blessings. He has been watching over Benjamin- we know it. There is no question in our minds that these blessings are the result of the many prayers, fasting, and the priesthood blessings on Benjamin's behalf! We owe Heavenly Father our gratitude for it all! No coincidences here- just direct blessings from heaven!

This past week, I have finally taken the opportunity to contact other "histio" (histiocytosis) families on-line. As rare as the disease is, there are many in our country who do suffer from LCH. Most are young children and babies like Benjamin. There are a few adults as well. As I have learned from my new "Histio Family", these affected people are called "Histio Warriors"! There are too many of them suffering every day along with their families. Many of them have a much worse case of the disease than Benjamin, where their more vital organs are affected, or their condition is more advanced. With all of the gratitude we feel today, I am still remembering the many new "family" members we have come to know recently who fight and fight this horrific disease!

In addition to our histio family, we are thinking of our wonderful friend and neighbor, Adam, who was diagnosed with Non-Hodgkins Lymphoma this past week. If you know Adam, or even if you don't, we are asking you to remember him in your prayers. Adam will begin his course of therapy (chemo, then radiation)next week! Adam, we know you will be blessed and watched over! Heavenly Father is mindful of you and your family! Have faith in all the prayers to heaven that will be said on your behalf! Prayer is real and it most definitely works! We think you are wonderful!

As for our little Histio Warrior, (the real reason for this blog) he was so happy and pleasant today. Once again, it pains me to give him his steroid that will make him not so pleasant and happy, but it is worth it to have such good results as we did today! The plan is to continue his every-three-week treatment plan through October. Then, if all continues to be well, we should be able to have his port removed. He will then be followed at Oncology every three months for a year approximately, then every six months for a couple of years. Then maybe every year after that for a couple more years- assuming he has no LCH recurrences!

Thanks for always inquiring about our little guy! We appreciate all of the love and friendship we have felt all around us.

Sickness in the Spring

Last, Wednesday, April 27th, was supposed to be chemotherapy day. As it turned out, Benjamin had a fever during our clinic visit. Instead of getting the Vinblastine, the routine fever work-up was done because they have to rule out any bacterial infections that might be caused by his IV port. A viral panel was done in addition where they found that he had Rhinovirus (just a plain old cold!). Nothing more was ever found but the poor little guy is still sick almost a week later, only without a fever thankfully!

The next day, Benjamin still had the fever. Only this time daddy, who played Mr. Mom for a couple of days while I was gone to BYU Women's Conference, got the opportunity to spend the day at the hospital with Benjamin! It was a long day for all of us, especially Dad! (I didn't enjoy Women's Conference as much as I would have liked to due to worry and concern for Benjamin and a possibility that they would admit him to the hospital again.)

Doug was ready to go back to work pretty quickly after playing "Mom" for those two days! But he was a trooper and took great care of Benjamin and the kids. We continued to worry about Benjamin's fever until Saturday morning when it finally seemed to break.

The doctor who saw Benjamin on Thursday insisted on giving him his chemotherapy afterall. If I would have been there, I would have protested. But now this week I am thankful that I don't have to make that long trip to the hospital again after all. Unfortunately for Benj, he still doesn't feel well and is having to take the dreaded Prednisone on top of it all for the next few days.

Interestingly enough, the Prednisone makes Benjamin hyper (in addition to the irritability). His hyperactivity is kind of funny! We laugh at him as he suddenly becomes intense at running, throwing things, and yelling! He cracks us up as a family! This morning, just after I got Benjamin dressed, Maile, his four-year-old sister, took off Benjamin's pants and then his diaper. He was running free throughout the house with her following and they both were having a great time! I decided to laugh with them and then was touched with a satisfactory mom moment! I realized that I LOVE my job as a mom! I'm thankful that Doug loves his job at his work and is supportive of me being at home!

Happy Mother's Day to all of the moms, grandmas, and women everywhere! What a blessing in this earthly life! I especially am thankful for my children, including my sick, but happy little guy! It is a privilege to be Benjamin's mom!

Follow-up testing for his LCH will occur in two weeks. I will blog the results then!

A Great Day

Top picture: Benjamin next to "The Hat Tree" in the Oncology Clinic. Kids who need a hat may take one and thankfully that hasn't been us yet. I feel constantly thankful for the volunteers who do such kind things to donate to the hospital! It is so amazing! We have benefited a lot from such generosity in the last six months.

2nd picture: Outside in front of Primary Children's observing the fascinating pinwheel blowing in the wind!

3rd picture: Just waiting for the doctor and the drugs in the exam room!


We had a normal chemotherapy day! Yay!!!! Everything went well yesterday! We were in and out quickly which is always a geat thing! I think however that Benjamin, at the age of 14 1/2 months, is beginning to figure this all out. Many of the clinic personnel know Benjamin as "Smiley Ben"! When they know we are in the clinic, they'll come to find him just because they love him and think he's so cute (my perception anyway)! Historically, he has been incredibly happy when we are there (except the times he has been sick of course)! I worry though that he is beginning to understand our purpose for being there in the hospital and clinic. He does seem less smiley each time we go. I'm sure this is partly because he is getting older too.

Yesterday, I talked to another family while waiting in the waiting room of the Oncology Clinic. Their 15 year-old son looked unwell and had a large bandage covering the one side of his neck. I realized again, as I have many times before, that I am thankful that at least Benjamin is young enough that he really is unaware of all that is going on around him. Assuming all goes well, Benjamin will be less than two-years-old when we complete his 52-week course of chemotherapy. Most likely, he won't remember any of this throughout the rest of his life! I felt so sad for this poor 15 year-old and his parents. They were from Utah County and fairly new to the health problem world. They didn't offer much more information than that and of course, I hate to pry too much. That boy is probably missing a lot of high school and other fun times of his teenage life. I just pray that people like them can find comfort and peace. I cannot imagine struggling through these tough times without my faith to sustain me!

More reason for my gratitude today, is another thought from my Thomas. Benjamin had his fourth real haircut last week! Thankfully, he still has that fine baby hair that doesn't show all of my little mishaps in haircutting (I am self-taught, thanks to my friend Amy who inspired me many years ago!). He is so so wiggly and of course, when I told him to hold still, he was not very obedient! (Laugh out loud, I know!) Anyway, while I was cutting, Thomas, our almost 13 year-old, told me that I shouldn't be cutting Benjamin's hair because we should be thankful that he even has hair! I have had that thought in the past but didn't consider it this particular time, just being anxious to trim the shagginess around his little ears. Thomas reminded me that I should be more grateful and I realized too that I should especially be grateful for Thomas' thoughtfulness. I AM thankful for Benjamin's hair! I am SO thankful for Benjamin's hair! And I am thankful that my almost-teenager was so full of wisdom!

At every visit to the Oncology clinic, I watch the cute little masked-face, bald-headed children! Usually they seem happy and fine. But occasionally I see them with throw-up buckets under their chins being wheeled in wheelchairs, and my heart aches! I imagine them at home where their hair falls out in chunks and how sad and scared they must feel! Benjamin's chemotherapy right now doesn't cause him these severe side-effects, and I often try to remember how thankful we are that we don't have to worry about a bald little head! I pray that we will continue to be blessed in this manner. I pray too for those we know and these children we see at the hospital that do have bald heads. They all MUST have angels being their guides!

More thoughts of angels have filled my mind recently. I LOVED the story in our LDS General Conference this past weekend, told by Elder Kent F. Richards of the Quorum of the Seventy. He spoke about trials and pain in life and told the story of a young 13 year-old who underwent a lengthy surgery to remove a tumor on her spinal cord. As she regained consciousness in the ICU following her surgery, she told her dad all about the many individuals there standing in her room and around her bed. She described each person in detail while her dad recognized her descriptions as family members who had passed away into the next life. For almost an hour, she went on telling of the people there. She told her dad that all of the children in the ICU have angels. I do believe it! I do! I believe in earthly and heavenly angels as I have felt their presence in that hospital and at different times throughout this experience with Benjamin. Angels must follow all of us at different times in our lives. What a wonderful blessing! I will attempt to post the link to Elder Richards talk if anyone is interested in watching or listening to it again or for the first time. It is very inspiring and about 10 minutes long.

Have a great day!

Finally a blog!

Hello everyone! I am so excited to finally have this blog ready enough for you all to hear Benjamin's story. For the most part, all of the past posts are copies of the emails I have sent out. I won't email anymore except to notify you that the blog is updated.

I am so thankful to have the opportunity to share "Benjamin's Bumps" story and hope that it can help someone, somewhere. Please feel free to share it with those you know.

I have not yet taken the opportunity to connect with other families around the country whose children have the same illness as Benjamin- LCH. Through the Histiocytosis Association of America, I have found that many of them have much more serious forms of LCH than Benjamin does. I hope to get in touch with some soon. I feel deep strength in sharing with others who have been through similar things. I appreciate our friends, the Allens, and especially Desirae who not only greatly contributed to the formation of this blog, but has been a wonderful friend that I feel a great bond with. Her nine-year-old son, Hunter, had a brain tumor last June and continues to have difficult trials as a result of it. Thanks Desirae for your support and friendship!!!

Next Wednesday is chemotherapy day again. Currently, Benjamin is doing well and we hope that continues. We are just waiting for the sun to shine! At the end of our visit with Dr. Fluchel two weeks ago, and thinking that this has been the longest winter of my life, I asked him if the sun was going to shine again (I meant it literally and hypothetically, because it seems that we have had nothing but cloudy skies here in Salt Lake this spring). He responded enthusiastically that, "Yes! The sun will shine because we are in Utah!" He then stated that he gets that question a lot this time of the year. Maybe we aren't the only Oncology patients of his, wondering if the light will come again.

I have relied on his confident reassurance a lot recently eventhough I have lived here in Utah my whole life. With constant cloudiness, I am beginning to wonder if the sun will shine again! Obviously, it has caused me to empathize with many who must wonder as they experience hardships and trials in life, where the light is and if it will shine again in their lives. We have hope right now with our good prognosis with Benjamin, and we especially have hope because of our belief in God, and his Son, Jesus Christ! Because of my faith in the light of Christ, and just as Dr. Fluchel knew the sun will shine again because we live in Utah, I know that through adversities and pains, if we rely on the Lord, we can have peace and hope! He has provided a way to return to live with Him, our Heavenly Father, and our families for eternity! We can and must have hope because of these things! It can bring us more joy than we can imagine, here in this trying earthly life, and especially throughout eternity! I KNOW IT! And I know that the sun will shine again!

Angela

Improvement!

Hello everyone!

As I last wrote, we were concerned about the bone lesion on Benjamin's forehead getting larger. Almost four weeks ago, we learned from the results of an x-ray, that it is actually getting smaller! We were thrilled with that news and figure that the bump must just swell or something at times. Also, Dr. Fluchel, our Oncologist, decided that because of this good news, that we could post-pone his follow-up treatment as well. So instead of doing all of the testing in March, we will wait until the beginning of May! That is wonderful because it's time-consuming and not fun for Benjamin!

Also, since I last wrote, Benjamin has been hospitalized again(AND had the chicken pox! Crazy enough! But that wasn't so bad after all!) as a result of different viruses he has had. Because of his central IV line (his port placed in his chest), the doctors have to rule out any bacterial infections anytime he gets a fever. Both times with a fever, the virus has caused him to be neutropenic (his neutrophils, a type of white blood cell, are too low.). So after a day or two of separate trips to the Oncology clinic/ ER where septic work-ups have been done on the little guy (blood work and blood cultures and then IV antibiotics), he finally has been admitted because the virus caused him to be neutropenic and immune compromised to the point that they worry about his susceptibility of getting another more serious illness. During his first hospitalization in January, they never found anything to attribute the fever to (and figure it was the result of one of hundreds of viruses in this world!). This last time (two weeks ago), they found that he had Infuenza B- a very minor virus. But atleast they had something to attribute the fever to and so Benj didn't have to stay in the hospital more than one night.

We thought he was much better after the flu, but then he had to deal with stomach flu too! So last week, he was sick again, only this time his neutrophils didn't drop. He was able to get his chemotherapy but they gave him some IV fluids to help! And it was a help! He recovered mostly by Thursday just in time to feel the side effects from his steroid he takes for the five days after the chemotherapy! He was very irritable all weekend. But today I am so happy to report that there is a smile on his face (and ours too) because we are done with steroids for two weeks and two more days! YEAH!!!

Thank you all for your concern for Benjamin! We still appreciate your thoughts, prayers, and acts of service on our behalf!

First Hospitalization and Birthday!!!

Hello everyone again!

It has been a while since I have updated about our Benjamin. He's been sick and we celebrated his first birthday!!! I'll try to be brief.

As you may remember, in early December Benjamin had follow-up testing to see how his LCH is improving. "Significantly improved" was the description we were given by the doctors!

Since then, the bone lesion on his forehead keeps flaring just before each chemotherapy treatment, which obviously has been concerning. Our Oncologist has been saying that because of this "annoyance", we will probably have to return to some more aggressive treatment, which was going to be today. However, we have had a little hindrance in this plan due to the fact that Benjamin was exposed to chicken pox last week from his big sister Maddie.

In addition to the chicken pox exposure, he got a fever on Tuesday of last week (which happened to be his birthday! Poor guy!). This has caused us multiple trips to the hospital in the last week and even a two-night stay. Because he has a central line (permanent IV port in his chest), they have to rule out any bacterial infections in his body. After many blood tests, cultures, and antibiotics, nothing bacterial was ever found and they figure he just had a virus. But with all of that too, his white blood cell counts became significantly low. He was finally able to be discharged from Primary Children's on Saturday but he had to be on IV antibiotics at home. Yesterday, we received word that his blood counts are improved enough to discontinue the antibiotics- YEAH! It was a little annoying having his port accessed 24/7 (It's like having an IV in your hand or arm if you've ever had one, only this of course is in his chest.).

Today was chemotherapy day! They were able to give the Vinblastine (the chemotherapy drug), thankfully. We were concerned that they may not because of his low white blood cell count. But our doctor did want to wait on the Prednisone because of his chicken pox possiblilty! Typically he gets 5 days of Prednisone after the Vinblastine. He is just having us wait a week on that- which means we are post-poning the irritability as well for Benjamin! This really is nice actually!

Now the plan is to wait three MORE weeks and THEN Dr. Fluchel, the Oncologist, said we would do an x-ray of his skull to check the lesion on his forehead. If it does show signs of flaring on the x-ray, THEN we will probably do a three week induction (chemo weekly and prednisone daily). The rest of the follow-up testing should occur around the beginning of March. This type of pattern will continue through October when Dr. Fluchel expects that all of the LCH will be under control.

Benjamin appears healthy and well! He's almost walking and is such a little delight! We finally had his birthday party last night with our family (our fourth attempt and nine days late due to his illness.)! His big sister Maddie planned the party with games, prizes, decorations, and "mouse" cupcakes! It was so much fun just celebrating this little guy's life! We feel so fortunate and blessed that he has been part of our family this past year! He has been such a blessing to our family! This whole experience has brought new meaning to the word "celebrate" for us!

Lastly, I just want to share with you all some thoughts I have had. While Benjamin stayed in the hospital, he was on the ICS unit (aka: "the cancer floor"). Each young patient there was missing his/her hair, which made us feel especially thankful (he just had his third real haircut!). We were surrounded by families going through much harder things than we have had to deal with so far. Because of Benjamin's exposure to chicken pox, he was in an isolation room. As we were leaving the hospital, just the two of us, I realized it was the first time he had been out of that room in 48 hours. I was so excited that we were going home! I then realized that he was feeling it too! His little bright eyes were fixed on all that was going on around us as we made our way to the elevator of the fourth floor. We entered the elevator alone and then were stopped on the third floor. A man and woman entered the elevator with a child-size toy wagon with the inscription "Ivy's Cancer Wagon" written on the back. Assuming that "Ivy" was their daughter and that they have spent too much time in the hospital, and that they have enjoyed their trips going home as well, I enthusiastically stated to them that we were happy because we were going home! The man replied, "Oh, that's good. We are going to be here until the end of February." Suddenly my excitement left me! I asked where they were from and when they replied by saying, "Vernal", (about a three hour drive from Salt Lake) my heart sank, imagining the trial it must be to live such a great distance from the hospital. What a burden these people were carrying! After wishing them well, Benjamin and I exited the hospital. As I drove home, I could only think about them, the other children I saw on that cancer floor, the children in the Oncology clinic that we have met, and even little Azalea Butler, whose mother we met in the surgery waiting room a few months ago. (Azalea's story is for another day. But to quickly summarize, she is a seven-year-old with a rare heart disorder who was having her sixth brain surgery; whose mom is single with four other children, only an apartment to live in, relying only on public transportation, and no family or friends nearby to help, not to mention having financial struggles too.)

With these thoughts, I recalled the moments in the scriptures when the Savior himself loved those who were less fortunate, sick, and afflicted in many ways. He especially loved the little children. I think my favorite part in all of the scriptures is the time when He appeared to the Nephites and blessed the little children.

3 Nephi 17:21-24 says, ". . . and he took their little children, one by one, and bblessed them, and prayed unto the Father for them. And when he had done this he wept again;
And he spake unto the multitude, and said unto them: Behold your little ones. And as they looked to behold they cast their eyes towards heaven, and they saw the heavens open, and they saw angels descending out of heaven as it were in the midst of fire; and they came down and aencircled those little ones about, and they were encircled about with fire; and the angels did minister unto them."
I hope and pray that angels do minister to these children daily like I have mentioned above. I know that Jesus Christ would take each of these children on his lap and hug them and love them if he were physically here today! He would weep for their pains and sorrows and then bless them and heal them too! I know that He would! He did it in times of old and He will do it again when He comes again.
I hope you all have a good night. I thank you for bearing with my need to share! And thank you so much for your concern for Benjamin!