Awaiting Follow-up Results

We had a great big party in October to celebrate!  With a huge, 18-foot blow-up slide, and lots of friends, and cake, we had an enjoyable day!  Benjamin had a fun time and even wore himself out to the point that he had to take a little break in the middle of the party.  Quietly he went upstairs and turned himself on a t.v. show and fell asleep, unbeknownst to the rest of us! We were so thankful to all of the friends and family that have supported us throughout this challenging time.  It was just a great day to celebrate with those we love, and appreciate a big triumph in the the life of our two-and-a-half-year-old!

Now, this week we await results from his three month follow-up appointment on Wednesday.  We pray for good news, but have faith regardless of the outcome!  Possibly, Dr. F will recommend that his port be removed before Christmas if we have good results (meaning there will be no LCH found).

Thanks for your continued inquiries!  We love all of you!

The x-ray table, which Benjamin has a love-hate relationship with! 

 He now seems to feel quite at home there!

Time to Have a Party!

September 2012

This time we really have a reason to celebrate!  We are going to have a party to rejoice in Benjamin's health and life with us!  He finished his second round of chemotherapy and is once again in remission from his LCH.  The blessings are numerous and we feel grateful!

Of course, we had to have a last trial before the end when Benjamin was hospitalized during his last chemotherapy treatment.  His fever from the Ara-C was so high and his blood pressure was alarmingly low, which was a cause to almost admit him to the PICU.  Thankfully, he was okay otherwise, so the ICS unit was sufficient for a day.  He was just miserable with vomiting and a high fever, which thankfully only lasted 1-2 days.  Poor little guy.  The hard times have really helped us appreciate the good times!  SO LET'S CELEBRATE!!!!!

We also now begin the waiting game to see if this LCH monster will return again.  His next follow-up appointment will be the week before Christmas.  If all is well, then he will have his port removed that week!  We continue to pray . . . and for now, we will just be thankful and celebrate!!!!

Round Two Almost Complete!

  

On August 2nd, Benjamin had follow-up scans and his seventh chemotherapy treament of round two.  What a blessing it was to see that there were NO MORE BONE LESIONS, and no new lesions either!  The chemotherapy has been effective once again and we feel so blessed.  We are so thankful to our Father in Heaven who has blessed Benjamin in this way.  All of our praise and thanks we owe to Him and that this is His will at this time. 

One more treatment for round two will begin next Wednesday, the 29th.  It is a bitter sweet feeling knowing that we still have one more treatment to endure.  Because he has been so sick the day or two following his first dose, it is a dreadful emotion thinking of fevers, possible vomiting, irritability and such.  However, we are so thankful that we only have one more treatment knowing that we are at the end again! 

Now the plan is to follow-up in four weeks after his last treatment with scans.  If everything is clear, then we will just wait for a couple of more months before we follow-up and remove his port.   And speaking of his port, we aren't so anxious this time to have his port removed because we dread having to replace it AGAIN.  So Dr. F said that we should hold off a little while but perhaps we can have it removed before the end of the year for our insurance purposes, which would be helpful!  Maybe a Christmas present for our little buddy?

Chances for recurrence this time?  We are not sure.  Still at least 20-30%, but with Doug's probability knowledge from college, he says chances are higher knowing that we have already been in that 20-30% category!  So we just hope and pray that Benjamin stays clear and free of LCH, but if he has another recurrence, WE WALK BY FAITH!

Oh, and I forgot to mention that he suddenly lost most of his fingernails and toenails a few weeks ago!  At least it wasn't his hair!

Thanks for all of your continued support, faith, and prayers for Benjamin!

We recently spent a week at a cabin in Bear Lake with my family.  Daddy flew Benjamin up to the top of this mantle, and he thought he was pretty neat! 

Mt. Naomi Berry Farms, in Hyde Park, Utah, invited HopeKids to come and pick berries there.  Since we were nearby in Bear Lake, we had a fun adventure eating and picking!  Benjamin did more eating that picking!  Who could blame him?  They were delicious!

Papa and Nana got to join us at the berry farm too!  We got so many blackberries that I even made blackberry jam- my first jam-making experience!  It was a new and fun time!

Monkey Grins!

 

 Thanks to Sydney in Texas and her parents, we received a surprise package in the mail this week!  A "Monkey Grin" box full of six monkeys and six lollies, one for each of our six kids perfectly fitting their gender, showed up at our doorstep on Tuesday!  This really did put a smile on each of our kids' faces (and I think some tears attempted to be concealed as well). 

We have constantly been praying for the comfort of little six-year-old, Sydney who, only two weeks previous, lost her three-year-old brother, Jenson, to LCH.  WE were suppose to be sending THEM a happy package, not THEM sending US one.  Needless to say, we were so touched!  Each of our children were so thankful and carried their monkeys around most of the week!  "Monkey Grins" were inspired by Jenson who apparently wanted other "histio warriors" to have monkeys.  So Jenson, Sydney, and their parents decided to put into action his great plan!  I have learned from reading Jenson's mom's blog, that those family and friends that attended Jenson's funeral brought monkeys to donate!  What a positive act of charity in such difficult circumstances.  We have been deeply touched by their family!

Now, we have reality to face as we consider another chemo week this week for Benjamin.  Honestly, I am dreading it again.  But I remind myself that we just need to endure for four or five days and then the poor little guy will be back to his normal self.  He makes us all laugh as he triumphantly shoots the basketball in the net and yells, "Oh yah!"  We think we have a future Jimmer on our hands- or at least his almost fourteen-year-old brother, Thomas, would like to think so, knowing he has taught him everything he knows about the game!  He is an amazing two-year-old ball player!  We need some video for future use on ESPN!  (Just kidding of course!)

I am also thankful for a day off tomorrow and a day together as a family!  This Memorial Day we will honor those family and friends who have passed on before us, and particularly this year we will continue to remember Jenson and his family as they grieve but have given us hope and "Monkey Grins!" These acts of kindness help us to continue to go forward! Thank you to Histio Angel Jenson!  Little buddy, you and your good family have inspired us all!

I hope you all have a great week! 

Angela

Steroids and Terrible Two's Don't Mix!

 Last Wednesday, clinic and chemo day, was a good day!  Dr. F said that we might only have to do 8 cycles instead of the expected 9 due to the fact that Benjamin is currently doing well and responding to this treatment.  Or he might spread out the treatments- rather than doing them every four weeks, maybe every five or six to the end of the 32 weeks.  We will see!  But this means that we are most likely half done with Round 2 (and hopefully forever!)! 

So Wednesday  (May 1st) was a good day especially because Benjamin was finally healthy otherwise.  Somehow I forgot about the 50% chance that he had of getting a fever from the Ara-C.  Sure enough, the next morning, Thursday, he awoke with a 102 fever and was almost 104 on Friday.  We spent Thursday and Friday in the clinic for IV antibiotics, blood cultures, and IV fluids.  He finally seemed to be better on Saturday.  We held the dreaded steroids during those two days but he still got the chemo each day.  Of all of those days though, I think we would all say that the fever was better than the steroids! Next time Dr. F jokingly said we should just make a fever appointment for the day after knowing he will inevitably get a fever from the Ara-C! We will certainly hope that he doesn't!

Steroids and the terrible-two's don't mix!  He becomes so irritable and difficult.  He is just not himself during that time.  He often cries for long periods too and has a difficult time relaxing.  Both Doug and I decided that for some reason, this time around was the worst steroid pulse for poor Benjamin.  We endured the Prednisone until Monday morning and finally he had a smile on his face just in time to go to bed Monday night!  No more chemo and Predisone for another three weeks!!!!  Thank goodness!  It seems harder to go back to chemo each time.  We can't decide if it is because we have had a longer break in between treatments and Benjamin seems healthy during those times, or if we have just been doing this so long that we are feeling a little tired of the whole routine.  I just try to remind myself that it could be so much worse.

Speaking of things being worse, I want to share my quick thoughts about little Jenson in Texas.

I found Jenson's blog from my histio Facebook group.  Jenson is a three-year-old with LCH, like Benjamin.  He has been fighting the disease since he was nine-months old, almost the exact age of Benjamin when he was diagnosed.  While Jenson has been spending his last moments hanging on to life, his only sibling received a concussion at school last week and was admitted to the same hospital Jenson is in.  I prayed that she, Sydney, could be released from her hospital bed so that she and her parents could spend their last moments with Jenson. Jenson did lost his battle with Histiocytosis on Tuesday of this week and they were able to be there with him, thankfully!  My heart aches for Sydney, and her good Christian mom and dad.  I have been deeply touched by their story.  Although it is so sad, you can feel of their faith by reading their thoughts and experiences.  They know that Jenson went to heaven, a better place for him, without pain and suffering!  I feel a greater desire to appreciate my little family a little more!  So hug your children, parents, family, and friends just one extra time today in honor of little Jenson!

All of this makes our five-year-old, Maile's new broken elbow, and Benjamin's disease, and any other trial I am facing seem so insignificant!  We go forward with faith and know that God will provide in His way and in His time, and life somehow seems to work out just fine!

Here is the link to Jenson's blog:  http://www.jensonsjourney.blogspot.com/

HAVE A WONDERFUL DAY!

Angela

Our "beautiful" little boy!  Oh, how he wants to be just like his big sisters!



Benjamin and Maile!



Moving Right Along!

Me and my buddy!

He loves making silly faces and has learned that he gets a lot of attention for them!

His port has to be accessed (with the needle and IV tubing connected) for four straight days for chemo treatments.

Mom giving chemo at home. The first day of chemo he gets in the clinic and the following three days we do at home. It is a 30 minute process with someone, usually daddy, holding Benjamin. He is a good sport!

I apologize that it has taken a while since I have updated. Benjamin is doing great! At our last chemo appointment, he had a skeletal survey (full body x-rays) done to check his progress. We received great news, that all of his bone lesions are "almost completely healed," as stated by the Radiologist, and no new lesions found! We are thankful for this news and feel fortunate that Benjamin is having success on this chemo regimen. However, we know that the real test comes when he completes this course of chemotherapy in September/October.

As for the effects of Ara-C and Vincristine (his chemotherapy drugs), he does okay with them. It is evident that these drugs are stronger than his first-round drugs were. He appears more pale, acts a little more irritable, and just wants to be held during the five days of treatment, and is just not a happy little guy. He has occasional jaw pain (a normal side effect), and still has to tolerate the effects of the dreaded Prednisone! All in all though, he seems healthy and well which we feel thankful for. We are also very thankful that his hair hasn't thinned yet. Dr. F. said that it probably would have by now if it is going to. So . . . WOW!!!! That is a huge blessing! I try to remind myself of that when he hands me a comb and asks me to "get hair done" every morning. I feel thankful for his hair!

I want to post a link to my favorite LDS General Conference talk again from this last Conference. (Actually, I had many favorites!) Elder Ronald A. Rasband of the Quorum of the Seventy spoke about his grandson who was born with a rare chromosomal disorder and spent a lot of time in the NICU at Primary Children's Medical Center (our second home- not the NICU of course, but across the hallway in the Hem/Onc Clinic). It was an inspiring talk!

He quoted Elder Russell M. Nelson saying,

“For reasons usually unknown, some people are born with physical limitations. Specific parts of the body may be abnormal. Regulatory systems may be out of balance. And all of our bodies are subject to disease and death. Nevertheless, the gift of a physical body is priceless. …
“A perfect body is not required to achieve a divine destiny. In fact, some of the sweetest spirits are housed in frail frames. …
“Eventually the time will come when each ‘spirit and … body shall be reunited again in … perfect form; both limb and joint shall be restored to its proper frame’ (Alma 11:43). Then, thanks to the Atonement of Jesus Christ, we can become perfected in Him."

I know that is true! I am thankful to know that! I am thankful for the Atonement of Christ and know that we can all be perfected through Him one day, including little children who seem to suffer so greatly at times on this earth, like my little Benjamin. I am thankful, we are thankful . . .

Here is the link to that talk:

Elder Ronald A. Rasband, "Special Lessons", April 2012 LDS General Conference

Thanks to you all for inquiring about Benjamin. You are all so very thoughtful! What a blessing it is to have friends. I will try to post a little more often. Have a wonderful day!!!!

Kindness and Awareness

The Activity Day Girls in our LDS ward gave us a "heart attack" just after Benjamin's recurrence news!

Many people have been so kind to do similar small acts of service that mean so much!

Liam's Lighthouse Foundation logo

Posters of children (and some adults too) all around the world who suffer from Histiocytosis. This was taken in Rockefeller Center, I believe, on February 24th. Liam's Lighthouse Foundation organized this Histio awareness campaign where many affected families stood outside of the Today Show and were visible to the entire nation for two days in honor of Rare Disease Day on February 29th.

First off, I hope you will all take a moment a view the video we as a family have been recently touched by. "Liam's Story" is sad but has inspired a drive in me and us to do more and to do better! I will post the link here to Liam's Lighthouse Foundation and you may click on "Liam's Story" on the right hand side of their page. To go straight to the video, you can go to my "Other Links" section on the left hand side of my blog. Here is the link to their website:

http://www.liamslighthousefoundation.org/

Thank you, thank you to Liam's Lighthouse Foundation for all of the work you are doing!

Keep it up!

As for Benjamin, he is doing well! His first chemo treatment (of round 2, of course) was on February 8th. He received the Ara-C and Vincristine in the clinic that day. He seemed to tolerate it well other than some minor stomach pain that he complained of. The next three subsequent days were at-home treatments. The home health nurse came on Thursday and taught me how to administer the chemo (scary thought, I know!). It turned out fine, thankfully.

With the flu and cold season being at its peak, Benjamin did have a miserable cold and cough for a couple of weeks. One day included a fever and a fever work-up in the Oncology clinic. But he seemed to get over it fairly quickly. Thankfully the fever subsided quickly too!

He also has had weekly blood draws and last Wednesday for the first time, his blood counts were low, another expectation. We have done our best to keep him away from germs, which is sometimes hard because we haven't been able to take him anywhere with us. But with so many of us to share the load and take our turn, I have been able to get out and get errands and such done. AND thanks to my mom and a other kind friends that have stayed with him, I have been able to attend church and do other necessary tasks. I appreciate it so much!

We have been abundantly blessed once again with so many friends and family who have watched over us and taken care of our needs. Thanks for caring. It means more than you know. Words can't adequately express our gratitude!

Benjamin's next cycle of chemotherapy begins this Wednesday, March 7th. We hope he does well and we will pray for no fevers as we continue to pray for his complete healing!

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!