Hard week and no chemo yet

Our little two-year-old! Happy 2nd Birthday buddy!


After port-placement surgery on Wednesday, February 1st.


Just before surgery, being silly!

Eating cupcakes!

That was a fun challenge!

Benjamin and his big sister, Maddie at Chuck-E-Cheese to celebrate!

Benjamin and his new LCH/Histio buddy, Hayden!

Hayden taught Benjamin how to make silly faces for pictures, and since then Benjamin sticks his tongue out when it's time to take a picture!

We love Hayden and his family! He and Benjamin enjoyed showing off their port scars to eachother.

Wednesday was port-placement day. The surgery began an hour and twenty minutes late but went well. We were disappointed that Benjamin's new port is in a different location than the first, however. The surgeon did not think he could place in the same position as the last because of too much scar tissue. Rather than having future problems, we decided to trust him and go with the new location. His port is now located on his upper right chest instead of his lower left chest area.

Recovery took longer as well because Benjamin threw up. As a result, they kept us longer and we were not able to make it to the Oncology Clinic before they closed. At that point, chemotherapy was going to be post-poned a day.

Again, the poor little guy threw up on our way home from the hospital and we then attributed this to having the same flu virus that our four-year-old, Maile had the same day. He seemed to feel much better later after he was able to eat our yummy dinner (brought to us by some wonderful friends) waiting for us at home!

The CT scan was scheduled for the next morning and once again, Benjamin was forced to fast as per requirements for the scan. I worried because he seems to dehydrate fast. We hoped he wouldn't have to be sedated as he hasn't ever needed to be in the past. After waiting for a while, the nurse was unable to use his port for the CT. At that point, we needed to go to Oncology so they could fix his port access. Instead of fixing it, they had to re-access it, which was the most miserable experience of the entire week for Benjamin! After having the surgery the previous day, and having pain because we couldn't give him any pain meds due to the fact that he was still fasting, they had to re-access it with a new needle and no numbing cream. Thankfully, the nurse was quick and able to access the port.

Finally, we were able to return to CT to get the procedure done. Because Benjamin didn't feel well, and had been fasting for so long, he was irritable and wiggly. They chose to sedate him at that point which ended up not being quite as bad as we thought. He was barely conscious of what was going on and didn't seem to be too bothered after all. We were then sent to recovery and that is where we figured out that he had a fever!

Dr. F decided that he didn't want to make Benjamin even more miserable that day. He concluded that is was okay to post-pone the chemotherapy initiation. Instead, we did the fever work up where Benjamin received IV antibiotics and fluids. He was such a trooper! He finally perked up around 4:00 when they de-accessed his port! I think he was just so relieved to be free of that miserable thing!

From the CT scan, we learned that he actually has three or four more lesions than they thought from the x-rays- two on his right ribs, one on his left rib, three or four on his right parietal bone (skull bone on the back top of his head), and still the one on his third left toe. Thankfully, the LCH this time is limited to only his bones so far.

His treatment map is a little different that what we originally thought. He will have the Ara-C and Vincristine for four days in a row, with Prednisone for five days, every four weeks, right now. This will continue for a total of 32 weeks, which is about 7 1/2 months- not a full year like we thought, assuming all goes well!!! We pray that all will go well!

As far as symptoms go, we have been told that he may experience stomach upset and hair thinning (probably not hair loss). Also, leg and jaw pain are common in kids this age with this dose. One symptom we are not excited about is the fevers. He seemed to have multiple fevers the last time and now it seems even more likely with the Ara-C.

All in all, we can do this! Wednesday should be the day that he will begin these treatments in the clinic at Primary Children's. Home health will come for the subsequent days of chemo, unless his blood counts are down or he is sick.

Thanks everyone for your concern! I don't feel like there are words enough in the English language to say thank you appropriately! I pray that God blesses you all for your compassionate service and caring on our behalf! We couldn't survive without all of your uplifting and encouraging words! The spirit of God fills our hearts with warmth and love when we think of you and your wonderful friendship to us! We will get through this, we know we will, but only with the strength of the Lord!

LCH is back

Southern California on Thanksgiving Day!

We had a lot to celebrate and be grateful for!



Riding the Teacups at Disneyland! Maile and Benjamin are buddies!

Celebrating at Disneyland! No more LCH (or so we thought)!!!!

This is not at all what we expected! We certainly knew that Benjamin's LCH could recur, but we were hoping for the best obviously! Benjamin's chances for recurrence were about 20-30%! We thought he was going to be in that 70-80% group but God has a different plan than what we thought and so we will just go with it to the best of our abilities! Sadness and fear have once again overwhelmed our hearts, but we have faith that Benjamin is in God's hands and that He will guide us every step of the way as he often has in the past. The latest story goes like this . . .

Last Wednesday was Benjamin's second birthday! As it turned out, Dr. F was in the clinic that day too. We had been concerned with the pain that Benjamin had been complaining of for the past 10 days or so. Each time we picked him up under his arms, he would wince as if something was tender there. After our appointment in Oncology, we took a trip down to Radiology for a skeletal survey. Because it was late in the day, Dr. F told us he would call us that evening or the next morning with the results. That night, we were able to celebrate the life of our little guy by having his special birthday dinner and then cake and ice cream with only our little family! We gave him his birthday present, which was a tee ball set and then played ball for a short time before everyone went their separate ways for the evening.

We received the surprising news the next morning when Dr. F called. He explained that Benjamin has four new bone lesions. One being the result of the pain in his side- the bone lesion is located on his rib. Another lesion is on his toe, and two are on the parietal bone of his skull. The treatment plan will include Ara-C and Vincristine, two commonly used chemo drugs and a little more aggressive than what we did before. This treatment plan will begin tomorrow after the placement of his port. He will then have a CT scan on Thursday along with chemo again. Friday and Saturday will also be chemo days. A week later will be the next treatment, then two weeks later, then three weeks, four weeks, and then five weeks later. After that, he will go every five weeks assuming he shows improvement.

I worry about these next few days knowing that Benjamin could potentially have some severe side effects with these drugs. However, I have learned too that because he will be on smaller doses than others who take these, his side effects should still be minimal. We pray that Heavenly Father takes care of him once again during this hard time. We have faith that "angels will bear him up!"

Thanks to my Aunt Pam who sent me the most comforting words today:

Isaiah 41:10, "Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness."

I believe these words with all of my heart! We as a family are so thankful and feel so comforted by the knowledge that God lives and Jesus Christ is His son who lives today! It is because of Him that we can have comfort in times of trial and challenges! These thoughts bring us joy and gratitude and hope for better days ahead even if things don't go as smoothly or as well as we might hope. Adversity in this short life is all part of the plan of eternity and salvation. We grow and change for the better if we are willing to accept the challenges God gives us and do our best with them as we know how. I know these things are true because I have experienced these emotions and many blessings from past hard times! Thank you all for your kindness, support, and especially prayers! It means a lot!

Here we go again!

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!