Second Opinion

 

 

I really wanted a  second opinion before we started treatment. It did not look like it would happen; however, our regular peds doctor somehow (pretty much a miracle) made this happen this morning. We were seen today at Children's Hospital in L.A.  Mr. Blue Eyes was not thrilled, and I can't blame him, but I had to do this for him and for our peace of mind. We saw Doctor Sun, and she confirmed the diagnosis. Then she gave us her protocol for treatment: 18 weeks of ALCL 99 Therapy — five days  in the hospital and then three weeks off to recover, repeated over and over again.  

 Oh yes, I wanted to throw up all over her hearing this...... MY mind went crazy.  What treatment is best for him? How will I know? I launched into a dark place.  Fortunately, my husband being the man he is, he just stays calm and cool as can be.  He holds my hand while I do my wig wig, and then I am OK again!

WOW overload!!!!!!!!!!

We got in the car and called our doc. He confirmed that this is a treatment he uses, but only on stage 3 and 4 lymphomas. He said he would call and collaborate with Dr. Sun a bit. FEWEE! WE ARE FEELING GOOD! We love our Doc and we are sticking with him. We have prayed for his inspiration  in Corban's case. We are trusting this and not looking back now. Onward we march. We get up at 4:40 a.m. to head to the hospital and be there by 5:30 a.m. to check in.

Happy Birthday to a special aunt today from Corban!!!!  xoxo

Strength

I open my mouth to share, I look up numbers, I compose emails......nothing happens. I feel as if I am frozen. Maybe that is why you are reading this for the first time and you did not even hear it from one of us. I have a voice that does not speak.  

In the past I have heard news like this before. It always made me hold my kids closer, weep, pray, and count blessings.

Part of it is denial; if I don't say it, it is not happening. If I don't share, you will not hurt with us.  I am working on finding my voice to share openly instead of hiding my terror behind a text or this blog. However, for now, it is the only voice that works.

Last night we had some pretty amazing prayers in our home. They were special priesthood blessings (see lds.org) given to Corban and myself, calling upon the powers of heaven. For Corban, consecrated oil was used for healing the sick (James 5:14-15).  It has really brought peace and hope. I could feel the strength of God behind every word my husband spoke. He blessed the doctors to be inspired with treatment plans and insights special for Corban. He blessed Corban to be strong and happy. I was blessed with strength to support Corban and our family and with the ability to accept help...

This morning Corban still has a headache, but is better than yesterday. :) I sat with him, stroking his cute head. I asked him what we are doing tomorrow and why we are going to the hospital. He replied, "I have cancer. It is lymphoma...I am going to get really strong medicine, and I cannot remember what it is called." Corban then asked, "Can cancer go away on it's own?" I told him that it usually does not, but that would be really cool if it did. I asked if he had any questions. He said, "Do you think I can bring How to Train your Dragon to play it at the hospital? Usually there is nothing good on T.V.. Oh, and Mom, are they doing surgery???" I replied, "Definitely no surgery, and yes, bring the show and we will see." He gave me one of those adorable smiles that he flashes, so happy that at least he did not have to have surgery.  He then said,  "I am not toooo scared anymore." 

This is him at one year. He always smiled with an open mouth; his smile was just too big to keep it closed. LOL!  I think inside he still smiles the same way.

This is him in true form — undies on backward showing his battle wounds. We all had a laugh over this. Mr. Blue Eyes said, "Stop making me laugh; it makes my headache worse." It was not us that put our underwear on backwards. Well, I haven't actually checked myself, so perhaps I have.... This week anything could have happened.

  Laughter is a medicine I cannot live without.  

Stage 2 now after 3 Radiologist reviewed pet scan... A BIT BUMMED

Corban woke up fine today. He had slept in bed with us, kicking us, and acting like it was his bed, not ours. lol! We love this kid. We were headed to his regular peds doc, and he suddenly developed the biggest headache and was crying at  the doctor's office. It was alarming doing a well check for a kiddo with cancer.  Why do we have to even bother?  He has been poked and prodded so much.  

I called the oncologist for help on what to do for him. He felt certain it was a spinal headache. He called in a prescription, and we are hoping for some relief. It has been tears and pain all day for Mr. Blue Eyes. Then, on that same phone call, the oncologist told me that they had several radiologist look at his scan, and the consensus is that his cancer is stage 2 because the two spots are not connected to each other in any way.  One spot that lights up with cancer is in his side that was ulcerated; the other is in his body (one of his lymph nodes), not connected at all. The cancer is considered systemic now. He also said that this is not a game changer. The treatment still will proceed the same way. We check into the hospital on Thursday morning and he will stay overnight for his first treatment.

99.5% sure we finally have a proper Diagnosis SEE POST OF 7/30 for the stage 2 update

 

 

Today was hopefully the last in a long list of tests to determine the diagnosis and treatment for Corban.

He does have ALCL Lymphoma. In the PET/CT scan, it was revealed that the cancer has spread into his body, but just on one side of his body. So the really good news is that it appears to be STAGE 1. The bad news is, it is still cancer. 

We still have to wait for the results of the bone marrow and spinal fluids labs (which were taken today), but hopefully they will be clear of cancer cells. Corban was so funny when they sedated him. He was slurring words together, and he asked me why I had four eyes when he woke up. He was rearing and ready to go home, but we all needed to sit with him and talk to him about the final results of this long mystery. Dr. Arminion told him that he had something called lymphoma and it contains cancer cells. He then told him that we need to treat those cells so that they go away and NEVER COME BACK!  This will be done with chemotherapy. 

When it was all over, he jumped into the wheel chair and wanted to do it all by himself. So he happily wheeled himself out to the hospital!

More updates when we know more.  He will start treatment within the next week.

A Radioactive Birthday.....

 

 

 

 

Back pack and Mr. Blue Eyes. The bag was filled with food for when the test was over.

 

Happy Birthday Corban!  Today was probably not the most exciting birthday he has ever had. Starting last night at five, he had to have a high protien diet, which consisted of chicken, broccoli and beans with no hot sauce. He was so bummed! For breakfast,  it was eggs and bacon (with no hot sauce again); this was certainly not enough for Corban, who has a ferocious appetite. He could only have water until the test was over. By the time we left the house around noon, he was just feeling awful.

We started first with vitals and the I.V. and three more blood draws. He really was not too thrilled, but took it like a champ. We were all really shocked by the many tender miracles of today. The staff in the office sang Happy Birthday to Corban. He was embarrassed and blushed a bit. He was then handed a Bionicle and a handwritten card with a $25 gift card to Toys R Us and signatures from all the staff and the doc. It was just what he needed to fill his day with hope and excitement. They made him feel so special. He really needed it. I have reflected so much on that generous offering; how it really helped during such a hard time for our son.  Next time you make a donation somewhere, just know that it does matter, and it does make a difference.

The next part was the radiation shot to make imaging of the PET/CT scan work. (Can I just say that, as a parent, seeing that silver container roll in feels like you're in a sci-fi movie; it's a weeee bit alarming.)  Nothing like having a radioactive kiddo for the next 24 hours. After getting this shot, he had to sit still and not even talk for one hour. We encouraged Corban to sleep, and he did for quite some time.  The PET/CT scan took about an hour. We got to be in the room with him for some of it. He said later that it was scary. I knew it was; I had seen his moist eyes while he was being scanned. He was so sick by the end, and it took several hours for him to recover, even after he had food in his tummy. 
A long day but it is over...  

THIS IS LIFE

 

Today I have been thinking a lot about how we live life and never expect to have these types of things happen. Who am I kidding? This is life, with its bumps, bruises, and insane roller coaster rides. Mind you, this week I feel I am on that roller coaster without a stinking seat belt. I have whiplash; I can't eat, I am angry, I can't sleep, I tear up all day long. Then I found this quote by Orson F. Whitney:

“No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God . . . and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father and Mother in heaven.”

So for today, I found comfort; for today I am just expecting this ride to continue, and I will build a seat belt out of duct tape if necessary. I will not give up, and I will fight with everything I have to help Corban in his journey with Lymphoma. 

Today I explained to him that he is going to have really cool pictures taken of the entire inside of his body when he gets his PET/CT scan. I told him he would have an I.V. He took it like a champ, but is a little nervous about the I.V. He was thrilled about the machine he gets to go in. It is even happening on his birthday, and he is just a trooper. His final request of the day is that we get to watch two movies for his birthday fun. Then Monday he will have a bone marrow sample taken in two parts of his hip. We did not get into detail, but he knows that this is so the doctors can solve the mystery of Corban's  ulcerated side. 

It is strange to not just tell him, but I think it is good to wait until we can see the entire picture and know what stage the lymphoma is in.  It has also given Todd and me the time to take in all that we are digesting about having this happen to our sweet blue-eyed boy and our entire family.  So if you're reading this, you too have decided to take this journey with the Larsen family.  Thank you for your love and support. Thank you for the prayers, and thank you for being willing to suffer with those who suffer. I never thought I would be on this end of the suffering, but since we are here, we choose to live to love and to fight.  

Toooo Much!

The day is at a close, and I feel I have lost a voice for sharing this news. I just cannot bring myself to share. I will quietly type, quietly sit, and quietly take in this event. I can fake the voice well enough over the phone, but I fall apart with hugs and visits.

Life will never be the same as it was; somehow this is changing me — it is changing so many things. How do we live life to the fullest? What dreams need to happen together in this family? What are Corban's dreams that we can make happen???

I think it is safe to say this is a parent's worst nightmare. Today it is TOOO MUCH.

The Call

The call came just after 9 a.m. this morning. The results from the second biopsy had come in. Corban has ALCL Lymphoma. In order to determine the extent of treatment needed, we will need to get a PET/CT scan, and a sample of his bone marrow. The doctor's name is Dr. Armenian, Saro D.O., M.P.H. Assistant Professor, Medical Director, Pediatric Survivorship Clinic, Childhood Cancer Survivorship Program. He was very kind. He told me he would rush the test and hopefully know everything by the end of the week. I managed to get out through my tears, "How do I tell my son he has cancer?" He assured me that we should wait and tell him together once we have enough information to share. I then started to call my husband, Todd.  Ugh, not fun news to share.
While I would have rather had better news, I am so relieved to know what Corban has. I am relieved to know that more tests will be done soon, and then sooooon, but not soon enough, treatment will begin. 

Waiting for the second time.........

Today we were seen at City of Hope by a group of three doctors and two assistants. Upon entering the room, I was wondering what was up. They had already received our biopsy results from Idaho, and we had just done Corban's seven vials of blood to help determine the results. The doctor told us that this was in fact not a Xanthogranuloma....... It was a malignancy. My heart sunk; we were just here to make sure that it was not rare leukemia sometimes associated with a Xanthogranuloma.

Corban had to get a biopsy on his side for the second time. I had to hold him because the needle was not as friendly as he liked. After they shot in the litocane, they took multiple samples. He played Mine craft on my IPod while they took the samples. He was brave! 

It is the little things everyday that shake our reality. Corban cannot swim because of the his huge ulcer
 on his side, and we have been at a family reunion. It has been emotional and difficult to be in this waiting stage alone at  a family reunion without anyone knowing what is going on.
 
So I have tried to become creative with what kinds of things he can do. Pictures is a new one. I am letting him explore his world using one of my nice cameras. YIKES! He said to me after taking a few pictures, " Mom, I want to learn how to use a camera so I can take pictures of my kids when I grow up."  I pray with all my heart that that "someday" is in his future. 

Corban knows that we do not know what is wrong with his side, but he does not yet understand the entire extent of what could be wrong. We will wait until we have solid information to share with him.   

To say there have been angels is an understatement. Two friends have brought dinner, and even my neighbor helped while we were at the appointment. I have felt my grandma with me and have found great comfort in prayer. One night, in a really dark moment of many tears, I read  in the Doctrine and Covenants, "I will be on your right hand and on your left, and my Spirit shall be in your hearts and mine angels round about you to bear you up." I am so, so grateful for the strength this brings; grateful for so many little things.

History

It all started November 2012 with a small round lump on Corban's right side. At first, we thought it was a spider bite. It just never healed, and finally we took him in to the pediatrician, only to be told it was eczema.  After two doctors and many tubes of steroid creams, it only got worse.

It has been much like a whirlwind. It all started at a family reunion in Idaho. Mr. Blue Eyes removed a bandage from his right hip. (It had a scab from what we thought was a severe eczema ball, which we had been treating with steroid creams.) What was revealed was alarming at best. It was a large, inflamed, open wound of ulceration. It had puss and red lifted welts. It was roughly the diameter of a baseball.

We left the reunion early and went to the E.R. in the Boise area. They were alarmed  by what they saw, and the doctor said we needed a biopsy but we would have to see the dermatologist first.  He said that it could be anything from cancer to an infection. Our hearts sank. The  E.R. doctor put him on an antibiotic called Septra.

The next day was a holiday, so on Tuesday we tried to find a dermo office. It was amazing how many offices were so nice and friendly, but unable to help or even look at his wound. I called Andrea, desperate to find someone to see Corban. Within one hour, she had found a doc in Twin Falls that could get us in. We packed up, leaving my cousin Jan's house, and headed for Twin Falls. Andrea, being the sis she is, met us at the office.

My nerves were on edge and my stomach was in knots. The doctor came right in and saw us. His face said it all. He said that this would be something unusual we were looking for, something out of the ordinary. A biopsy was taken and Corban got his first stitch. It would be one week before we would get the results, and he could get his stitch out. That week was one I know many others have lived through, with the same worries and fears that rage through your heart and soul. I feel for all those who have been in my shoes.

By the time the week had passed, I felt I had aged, and my stomach and entire system was a wreck. In the end, I just prayed for the strength to handle whatever came our way. The wait in the office was so long, and then finally, the doctor came in. He said that it was not cancer, or a virus, bacteria, fungus, or even an infection. He then said that because it did not show up on any of these tests, it would fall into the class of a Xanthogranuloma. We do not yet know what kind, but we will have to follow up at a university hospital. So we all took a deep breath and said a million prayers of thanks. The wound is very sore and ulcerated, so it will be a journey ahead, but we are so so grateful for what we think is a smaller problem than some others.

Now that we are home, the journey has been long and very difficult with insurance. Finally after being home for over one month, we will see a City of Hope doctor named Doctor Karras. She will be looking at his pathology and blood test to see if Corban has any risk of cancer.

The Wound itself....

May

First week of June after the first biopsy

Mid June

July after the second Biopsy

End of July

We are trying to document to course of Corban's ulceration on his right side. 

This is the only band aids and supplies that worked to protect the wound. Not cheap, but it was worth it to save him the pain from band aid changes.