Post-poning Chemotherapy

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

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

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

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

Our Histio Warrior is Winning!

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

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

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

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

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

Sickness in the Spring

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

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

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

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

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

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

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

A Great Day

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

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

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


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

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

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

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

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

Have a great day!

Finally a blog!

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

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

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

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

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

Angela

Improvement!

Hello everyone!

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

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

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

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

First Hospitalization and Birthday!!!

Hello everyone again!

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

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

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

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

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

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

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

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

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

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