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.