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!