Good News

We received good news today!!!! Benjamin's LCH is improving! He had his CT scan today (and didn't have to be sedated- a blessing too!) and all of the lesions show good signs of improvement! We were so happy and relieved. Now he will only have to receive the chemotherapy every three weeks. He will take the full dose of the not-so-fun Prednisone again, but it will only be for the first five days after his chemotherapy every three weeks. And we start that tonight.

Follow-up testing will occur again after three more months for the next 12 months. We feel so blessed and grateful today! We know Heavenly Father is watching over Benjamin. He has been so happy and pleasant the last few days. It's nice to feel like we're returning to normal- sort of.

Also, the tree created by Jackie Petersen and friends at the Festival of Trees is just beautiful and so darling! It is on aisle E-17 at the South Towne Expo Center! Jackie even gave Benjamin a token of remembrance- a "Jimbo" the giraffe and he just fell in love with it! It's the same giraffe as the ones on the tree! He loves it and we have watched him several times playing with it's ears or tail while sitting in his crib. It's a precious sight! Thanks Jackie! This has been really fun for our family!

We hope you all have a great Christmas season, since it's December 1st! I'll still send periodic updates to keep you informed but probably a little less frequent. We can't thank you enough for your prayers and kindness towards us. We know this isn't over yet and this may not be over for many years (because of the likelihood that the LCH will reoccur because Benjamin is so young), but for now, we feel so grateful for the good news!

First Fever and Festival of Trees

Hope you had a great Thanksgiving! We did! It was Benjamin's first Thanksgiving and I would imagine he'd probably say however, that it wasn't so great for him! He didn't feel well and so he didn't take advantage of the yummy mash potatoes that normally would have been his favorite!

Wednesday was suppose to be the big day! The follow-up CT scan was scheduled for that morning (the 24th) but as it turns out, Benjamin woke up with a fever on Tuesday morning (the 23rd). We spent Tuesday at the hospital instead of Wednesday. After IV antibiotics and fluids and even a little oxygen too, he recovered enough to come home Tuesday afternoon. Nothing serious was found and they figured he must have had a viral infection. As a result of the fever, we had to cancel the CT scan (because they wouldn't sedate him). We were disappointed because we feel anxious to know the progress from the chemotherapy treatments. On a positive note, we didn't have to drive up to the hospital in the "blizzard" storm!

The CT scan has been rescheduled to this coming Wednesday (assuming Benjamin is healthy and well- today he has cold symptoms with a really terrible cough, as any of you who might have heard during church today!). After that, we will meet with the doctor and determine the next steps. We hope that the treatments will be reduced to every three weeks instead of every week. That is the plan IF there is enough improvement in the lesions. If not, then we will have to increase to a more aggressive treatment plan. Dr. Fluchel is optimistic. Yeah! We'll keep you informed.

Also, I wanted to inform you of a neat thing for our little guy! We have a family friend, Jackie Petersen and her friends who have decorated and donated a tree for the Festival of Trees in honor of Benjamin this year! We are so excited to see it as we know Jackie has put a lot into this tree. It is going to be an amazing tree! If you are interested in seeing it, the Festival of Trees is being held this Wednesday, Dec. 1st through Saturday, Dec. 4th at the South Towne Expo Center. Jackie also has made available some discount tickets if anyone is interested in going. The cost for them is $2.50 per child and $4.00 per adult. Of course, all the money raised there fully benefits Primary Children's Medical Center. I love the Festival of Trees and always have! (In fact, Doug and I volunteered there together on our first date!!!) We have gone almost every year in support of the Festival, but we never thought that we would be on this end of it, having a sick child who has greatly benefitted from the care at the hospital.

Let me know if you are interested in tickets. Also, we'll keep you updated this week on Benjamin and how the events of Wednesday play out! Thanks again for your continued prayers. We need them still!

Progress and Blessings

This picture was taken after his second surgery when his IV port was placed! He recovered so quickly from both surgeries!

I just want you all to know that Benjamin is doing remarkably well! We feel fortunate that he is happy and crawling all over the house! His chemotherapy has caused him to be more irritable than usual and he also is not sleeping well (of course, neither are we!), but we know this situation could be so much worse!

Yesterday, his chemo treatment went more smoothly than the last because they were able to access his port. With Emla cream (for numbing the site), he didn't seem to feel the pain from the needle placed in the port. He was more bothered by the nurse that was pestering him! The oncologist, Dr. Fluchel, was amazed by the improvement of Benjamin's eye! We continually feel grateful that his eye appears drastically better! The swelling is gone and we can't feel the lesion that was there. We're hoping that the other lesions will show as much positive change when we return for the follow-up testing in 3-4 more weeks!

We also are so excited that Benjamin's bone marrow biopsy results were normal! That is a huge, huge blessing! There are still some hurdles to climb and so we know that we still need your prayers.

Thanks so much again for your prayers, words of support, and acts of kindness! Thanks to ALL- friends, family, friends of friends, and friends of family who have prayed for us! We thank you for putting Benjamin's name on the prayer rolls of meetings, temples, and churches, even from those of other faiths! We are touched when we hear of many of you who have included him in your family prayers too. That just means so so much! We know that prayer is real, that it works, and that Heavenly Father hears them and answers them! So prayers for Benjamin are the best thing that anyone can do for us right now!

It's hard to describe the feelings of love that we have felt from you as well! This hard situation has felt much easier to bear because of our friends and family who have helped to "make our burdens lighter"! It really is true what the scriptures say, that bearing others burdens will make them light. I promise to you that we have really felt that! Our burdens have been lighter because of you! This has motivated us to have more charity and compassion for others and we hope that we will have opportunities in the future to repay you all for the charity you have given to us!

We love you and thank you.

First Day of Chemotherapy

First day of chemotherapy was much better than we thought! We are so thankful for that! We met Dr. Mark Fluchel, an oncologist at Primary Children’s (and an “expert” on LCH). He was wonderful! He spent a lot of time with us answering all of our questions. I will try to be brief and basic.

Benjamin’s chemotherapy will be a “mild” regimen. He will receive a chemo drug called Vinblastine via IV every Wednesday. This is in combination with Prednisone, which has the worst side effects of the two. I have to be the mean person and administer that twice a day, orally at home. They have said that his side effects will mostly include an upset stomach, irritability, and difficulty sleeping. (Most likely he will not have hair loss! YEAH!) He will have the puffy face soon and that will probably last the first 2 months or so. This will be his routine for the next six weeks (although they will wean him down on the Prednisone after four weeks).

After the six weeks, they will order another CT scan to recheck the lesions and growths. If there is improvement in the lumps on his skull AND the spots in his lungs, they will have us come for chemotherapy only every three weeks for the rest of the 12 months instead. The Prednisone will be for five days only during those three weeks- I am sure that will be a relief. If there is no improvement, then they will change the chemotherapy to stronger medicine.

We will continue with a few more tests as previously planned. The MRI of his brain will still be this Friday (Oct. 15th). Then next Tuesday, Benjamin will have a permanent (for 12 months) port placed in his chest so he doesn’t have to be poked for a new IV each week. At that time, they will also do a bone marrow biopsy to check and make sure his bone marrow is free of LCH. Then Wednesday will be his next chemotherapy treatment, which will be quick. The infusion itself was only maybe 30 mL and the nurse injected it all straight into his IV. It took maybe 1-2 minutes to give- much less time consuming than we were originally told. Yeah!

A few quick things about Langerhans Cell Histiocytosis:

1- Some professionals call LCH cancer and some call it an autoimmune disease. They don’t really know exactly what to call it, according to Dr. Fluchel. So much is still being learned about LCH- even in the last 15 years, they have learned so much. It’s hard to say why they don’t call it cancer, but that’s okay with us! Langerhans Cells are normally found in the body and maybe that’s why.

2- It can affect multiple organ systems and that is how they determine the severity. Because Benjamin has it in his skeletal system AND his lungs possibly, they are categorizing him with “moderate risk”.

3- Prognosis- Good! Dr. Fluchel said most children do well these days with 12 months of chemotherapy. Only a few years ago, they treated it with 6 months of chemo, and at that time there was a 1 in 3 chance that LCH children would get it again sometime after their initial chemotherapy. Now they think there is only a 1 in 4 or 1 in 5 chance that the LCH will return with the 12 month treatment.

As for the little guy, the real reason for the lengthy email, he’s doing fabulous! The hardest part of the day for him was the skeletal survey (which they found nothing new thankfully!). He didn’t like laying on the table for 20 minutes, while strange ladies were trying to hold him down for x-ray pictures. I gave his first dose of Prednisone tonight. We’ll see how he does with that.

Thank you all for your concern and support. It means so so much. More than you might ever know! Again, we know Benjamin is being blessed. Thanks for your prayers. We feel thankful for today.

It is LCH

This picture was taken just after his biopsy surgery. They biopsied the bump over his right eyebrow. The surgery went well and we were thankful to return home that evening rather than having to stay the night, which they almost had us do.

We just received the news! Benjamin does have LCH (Langerhans Cell Histiocytosis) like they thought. We feel relieved to actually know and we now have a treatment plan too. It will proceed as follows:

This Wedesday we will go to PCMC for 1- a skeletal survey (x-ray of his entire body) to make sure there are no other bone lesions. And 2- And appointment with another oncologist named Dr. Fluchel, who is more of an expert on LCH. Also at that appointment, Benjamin will receive his first chemotherapy treatment. This will be IV and will infuse for 30 minutes to 1 hour. We will then be released to come home!!! I am thrilled that there will be no inpatient stays with this course of treatment (unless there are complications of course).

Friday of this week, we will return to the hospital for an MRI to check his pituitary gland. Then next Tuesday, Benjamin will have a portacath (a permanent port to infuse IV meds) surgically placed. Then next Wednesday will be his next chemotherapy treatment.

The chemotherapy treatments will be weekly for six weeks and then he will have another CT scan to see the results. Then they anticipate this course of treatment to last for 12 months approximately.

We feel relieved to know his diagnosis now. We feel so blessed that they do know and that we don't have to wait and wonder any more. We also feel thankful that we can get this started so quickly. We have some anxiety and worry as to how the chemotherapy will affect our little guy. But we feel like we are in good hands with great doctors.

With so much support from you all, we know we can get through this! It is so difficult to express our gratitude to each of you for your thoughts, prayers and fasting. We know that many of you fasted yesterday on behalf of Benjamin and we can't thank you enough. PRAYER AND FASTING WORK! We know it. And we are overwhelmed at how you all have shown so much love and compassion towards us as a family and especially little Benj! Heavenly Father is watching out for him too and we couldn't ask for anything more than that. We feel so much comfort and peace from this knowledge. We know this is going to work out and that Benjamin will be continually blessed throughout this process. We just have to do our part in helping him the best we can and Heavenly Father will take care of the rest!

We love you all! Thank you, thank you.

The Very Beginning

It's been a crazy week for our family and I think I need to bring all of you into the loop because we will need your prayers. We learned this week that our little Benjamin has a serious health issue. What we thought was a bump on his eye from learning to crawl has turned out to be much more serious.


Here's the situation so far:

We know that Benjamin has 3 lesions and/or tumors on his skull which were found on the CT scan Monday (we took him in to be seen by our primary care doctor because we thought his eye was infected or had something in it- well, that we were right about, just not at all what we expected!).

Tuesday they found more lesions on his thymus (near the sternum) in his chest. They also found some small ones in each of his lungs.

The doctors are still considering the same diagnoses as Monday- that this is one of two things: 1- Langerhans Cell Histiocytosis (LCH), or 2- neuroblastoma.

The LCH is not cancer but is a cancer-like disorder. It spreads like cancer and is treated like cancer. The doctors leaned more towards this condition but they still are unsure. The LCH is more likely a 12 month process with chemotherapy. A neuroblastoma is a type of cancer that would more likely be 8 months with chemotherapy. However neither diagnoses is more preferable because one could be at more of an advanced stage than the other depending on his condition. Of course we hope for the one with the best prognosis- something the doctors really won't tell us until they know exactly what the situation is. Right now, Benjamin is doing great and shows no signs of problems other than the bumps on his head.

Tomorrow (Thursday), we will go back for the biopsy. Then we will receive the results from the Oncologist as soon as they get them, which we were told wouldn't be until most likely Monday afternoon.

The doctors were optimistic. Due to Benjamin's age (8 months), he should handle this well and probably come through with flying colors! We feel strongly that Heavenly Father is taking care of us! Benjamin received a special priesthood blessing by his dad and grandfathers on Monday evening. We know that with faith in the priesthood and the gospel of Jesus Christ we can have peace even in these trying circumstances. That's not to say that we think this will be easy. We know that this will be a difficult and prolonged process with serious challenges. But we do know we can get through it if we are faithful! Heavenly Father has taken care of us so often in the past and we believe He will take care of us again.

Benjamin is still the happy, crawling busy-body that he is! And we are so thankful for that!

If you will just pray for Benjamin, we'd greatly appreciate it!

NEVER thought this would be us! What a difference a day makes! We'll try to keep you updated. Thank you so much for your friendship and kindness towards us. We think you are all wonderful!