Neuroblastoma

I'm sure some of you have googled "neuroblastoma" after hearing this is what Nate has been diagnosed with. I will do my best to give you a description of the disease and how Nate fits in.

Neuroblastoma is a rare childhood cancer.  Really, all childhood cancer is rare (about 7-10,000 kids are diagnosed with cancer every year, compared to about 11 million adults), but neuroblastoma is very rare (only about 700 cases per year). It is a cancer of the sympathetic nervous system (the fight or flight system), with tumors originating anywhere along the sympathetic nervous system but commonly on the adrenal gland. These tumors are usually formed in the womb or shortly after birth (crazy to think that this has been silently growing in my baby all this time). Neuroblastoma can range from benign (watch and see) tumors, typically found in newborns, to super aggressive tumors that can spread to almost anywhere in the body.

Neuroblastoma is very hard to diagnose because it rarely has any symptoms until disease is wide spread and the symptoms generally mimic common childhood illnesses. The rarity of it also means that your pediatrician has probably never seen a case of it and would therefore not catch it. While the rupture of Nate's tumor that occurred when he ran in to our ottoman caused "spillage" (which could mean cancer cells circulating in his belly), we are very grateful that this occurred, otherwise we probably would have never found this until Nate was a very sick little boy.

Neuroblastoma is categorized a number of ways depending on the tissue and genetic make-up of the tumor, the age of the patient at diagnosis (less than 18 months is best) and the spreading of the cancer. Patient's are categorized as low risk, intemediate risk, and high risk. This risk assessment refers to the aggressiveness of the tumor and therefore the necessity for more or less aggresive treatment. Neuroblastoma is also staged from Stage 1 to 4. Nate is high risk, Stage 3, which means that Nate has a VERY aggressive tumor with a high risk of spreading, but it has not spread. As far as the treatment he will receive, it doesn't really matter if he is Stage 3 or 4, all that matters is that he is high risk. He will receive the same treatment as a Stage 4 patient. The reason he was categorized as Stage 3 is that no metastases were seen on any of his scans and his bone marrow came up clean. There is one spot on his liver where the tumor was sitting and one area down low between his kidneys that are showing "neuroblastoma activity", but the doctors are calling these "invasive areas" or areas left behind at tumor removal and not metastases. These areas will be watched and Nate may need to have more surgery to remove these.

This cancer is rare already...but Nate is VERY rare. In the last 10 years, there have only been about 100 patients in the same position as Nate (with a very aggresive tumor but no spread of disease). Usually a 2 1/2 year old with this aggressive of a tumor would be VERY sick and have cancer all over their body. Nate is breaking the mold already!

So, how do we treat this and make Nate CANCER FREE? Here is a brief overview of Nate's treatment if we stay at PCH. 6 cycles of high dose chemo therapy. Each cycle is 21 days, with 5 days of chemo (usually in the hospital) and 16 days "home". I put home in quotations because, at best, we will be spending lots of long days at the clinic and, at worst, Nate will have to be admitted to the hospital during his "home" time (any time he has a fever, we have to be admitted). The cycles may also be more than 21 days apart if Nate's blood levels do not return to the correct levels fast enough.

After cycle 2, he will have his stem cells collected, where he has to sit still for 4 to 8 hours a day for 2 to 5 days in a row. After cycle 5, Nate will have surgery (if necessary) to remove any remaining tumor areas. After these 6 cycles, Nate will undergo a stem cell transplant. A stem cell transplant is a procedure where they will give Nate a HUGE dose of chemo (about 10 times the amount he already received) that will wipe out his bone marrow and entire immune system. They will then give him his stem cells back so
that he can rebuild his bone marrow. This procedure requires total isolation, in the hospital, for 4 to 6 weeks. Finally, Nate will receive an special antibody treatment that is specific for neuroblastoma. This is a VERY painful infusion, but doesn't have too many side effects. This will take about 6 months to complete, but hopefully can be done mostly outpatient (spending all day, every day for a week every month in the clinic but at least we can sleep at home at night). This is all assuming that Nate's scans remain clear and that he tolerates all the treatments well. Oh yeah, he will also probably have radiation to his abdomen at some point along the way but I dont remember when and I dont really know what that entails yet. Completing all of these treatments gives Nate the best chance at being CANCER FREE FOR LIFE.

Chris and I are also considering a protocol only available at Memorial Sloan Ketteing Cancer Center (MSKCC) in New York City.  I will write more about that later.

I have always been a planner. Pretty much anyone who knows me, even a little bit, could tell you so. Unfortunatley, cancer and cancer treatment don't like planners. We are literally living one day at a time. It's amazing, that after 33 years of planning, it's only taken me 3 weeks to switch to living this way...one day at a time. This cancer and treatment will surely throw us for some loops along the way and we will face them...one day at a time. One day at a time...we will get Nater to living CANCER FREE.

As you can see, the next year and a half are going to be SUPER tough and not at all the way we expected to spend 2011-2012, but I know we CAN get Nater through this.  Especially, with all the love and support of our wonderful family and friends. I keep wondering how at this, really the most difficult time of my life (and I've already been through some doozies), how can I still feel so happy (a lot of the time) and blessed?!? Wow, we must be really blessed!! Thank you all for the outpouring of love and support. You are really lifting us up in our time of need. Please continue to pray for us as we wade through this treatment. We have already had many prayers answered and need many, many more.

Strength and Renewal

I'm sorry for the lack of any real updates recently. At the end of most days, I'm just to wiped to sit down and write about it. I will do my best over the next couple days to catch everyone up on what we've been up to, the treatment plans and decisions we have to make and the lessons I've learned so far.

Our time home was awesome! Nate recovered quickly from his surgery and was back to his old self in no time. It was nice to sleep in our own beds, with all 5 of us in our home at the same time. It was also nice to do "normal" things like, go to Costco.

Nate's main oncologist wanted to delay the start of chemo until the results of all the tests on his tumor we're duplicated by COG (Children's Oncology Group), a nationwide network of children's cancer doctors who all collaborate to ensure kids are getting the best care. Nate was discharged Friday night and due to return Tuesday to start chemo. They called and pushed it back to Thursday because they hadn't received the COG results.

After packing as much fun and normalcy in to the week as possible, I took Nate to clinic Thursday knowing that we were probably going to delay chemo again because we still hadn't received the COG results and Chris and I were trying to make some decisions about the future of his care. Thursday's clinic visit was really rough for me. I was by myself and our main doctor was not there and the doctor I spoke with was pushing to start chemo, even without the COG results, which didn't make any sense to me because we had already delayed it 5 days waiting for the results (at the recommendation of Nate's doctor). I also felt like they were pressuring me to not consider the other therapy course we are considering. Ultimately, we decided to delay chemo until Monday when, hopefully, the COG results would be back and Chris could come with me to meet with Nate's main oncologist and discuss therapy options.

I am so glad we delayed chemo a few more days!! We had an amazing weekend! I took the kids to Imagination Avenue (a place we won't be able to visit once chemo starts because it's a germ fest) on Thursday afternoon. Friday we went to the Harkins kids movie. Nate loves going to the "voo-vies". Then had Chino Bandito for lunch and checked out toys at Target. That afternoon, we learned that Jaime's water had "accidentally" been broken by her doctor and that my nephew was on his way!! Friday night, Chris and I went to see Captain America. I woke up Saturday morning and headed to the hospital with my mom and aunt to wait for my nephew to be born. I had the great privilege of helping Adam and Jaime's mom and sisters coach Jaime through her labor and to watch my nephew be born!! How awesome is that! It was a hard labor, Jaime pushed for 2 hours with minimal help from her epidural and she wanted to give up twice, but she didn't and she was awesome! I can never thank her enough for letting me be a part of her special day. What a great reminder that we can get through anything, no matter how great the pain, if we take each moment as it comes and NEVER give up. Sunday we had a fun filled day. We attended church and spoke with so many nice people who we have only before met in passing who offered help and prayer. We also listened to a great sermon on not giving in to fear. We took the kids to meet their new baby cousin, then met the Schneider's for lunch and a fun filled trip to Jambo Indoor Amusement Park (another chemo no-no germ fest), where we learned that Nate would like to live in an indoor amusement park because he cried when we left and said he wanted to live there "fo-ever".

That night, I took the boys in the pool (no swimming for Nate because of his central line (a tube into his chest that they can use to deliver chemo, other meds and draw blood) so he got in an inflatable boat with a "Mommy motor" and was as happy as a clam). I looked at my sweet little Nater and thought, "I CAN do this...whatever it takes...I can and will do it". Unfortunately, in those first few days of diagnosis I did not always feel this way. In fact I think I said "I can't do this" over and over. Really, I have no choice. I don't yet know why this is Nate's journey, but it is, and he's worth it. There is no time to fear the future or mourn the past, we must take this disease on, one day at a time. I feel strong, I feel prepared. I CAN DO THIS!!

Here we go...

Starting chemo soon. Please send prayers and positive thoughts that this will be as easy on him as possible.

Update

We are pretty sure Nate will not be starting chemo tomorrow. We are still waiting for confirmation on the risk assessment and we are strongly considering a treatment regimen through Sloan Kettering in New York City. Too much to think about! Please pray for us as we wade through all the information on our way to making decisions.

Back at work today

Everything's the same...and yet nothing's the same. My goal was to not cry at work...I made it until 9:20am.

Slight Change of Plans

Nate will now be admitted Thursday morning to start chemo. The doctors are sending everything off to double and triple check that they have the correct diagnosis and staging prior to starting treatment. Hooray for a couple more days at home!

Here it is...

I'm still not ready to write it, but here it is...my little boy has cancer. The last week has been so horrific it is completely indescribable to those who have never been there and for those who have, I am so sorry. No one should EVER have to experience this. I have a constant crushing pain in my chest that I fear will never go away, my heart is broken.

Nate has been diagnosed with neuroblastoma. So far they are giving it a stage 3 (because it has shown no signs of metastasis), pending a bone marrow biopsy tomorrow. Please pray your loudest prayer that his bone marrow is clean. It's very important and very scary waiting to hear.

I'll go into more detail about his treatment as I feel up to it, but we have a very hard and very scary year or so ahead of us, with a LOT of time spent in the hospital. I have every confidence and faith that my sweet little boy will grow into a VERY special man with no signs of any disease. We just have to pull together and get through this year, which I know we can do with the help and strength of our family and friends and God.

We will most likely be bringing Nate home tomorrow night (please pray this works out as we hope) to spend a few nights at home before checking back in to the hospital on Tuesday to start chemo.

Thank you for all the thoughts, prayers, notes, phone calls and meals. It all means so much. I hope you guys are up for a year of this too.

I want to share a story...
When Nate was a baby, about a year old. My mom, Wes, Nate and I were having lunch at Pei Wei. Out of no where a gentleman walked up to our table and said, "Sometimes God speaks to me and usually I don't tell anyone about it because people think I'm crazy, but I really felt that God wanted me to tell you this". He pointed at Nate and said, "that little boy is very special, God has big plans for him". Then he walked away. My mom and I couldn't figure out if that was cool or creepy, but it stuck with me for a day or two. Then, I hadn't thought about it again until the day after all this started. Well, I can't wait to get my boy through these treatments and see exactly what big plans God has in store for him.

Prayers Needed

Heading down for another big scan soon. Lots of prayers and positive energy please!

7/13/11

Nate had a good day today. Being a goof, sitting in a chair to eat his meals, visit from a therapy dog and playing in the play room. Please keep him in your thoughts and prayers in the days that follow as we start a battery of tests, scans and procedures and start to get some answers as to exactly what this is and how we are going to fight it. Please pray for a short, gentle treatment regimen for my sweet boy

A Note from Daddy

Hey all…

   I wanted to send a note so we could get an update about Nate out there.  I'm sorry we couldn't get this out sooner.  Everything tends to move so quickly, but the information never comes fast enough to satisfy.  Beth is much more avid on the internets with the Facebook, so I'm having trouble keeping track of which people know what stories.  Feel free to share any of this to anyone that you see fit (relying on the rumor mill tends to take a great deal of work off our plates):

Thursday night, Nate had a fairly innocent jump onto a 2-foot ottoman we have in our family room.  He flopped onto his belly, only to start complaining of abdominal pain.   The pain didn’t subside and led to vomiting.  Considering how indestructible he’s been, and how little he complains, since he’s been born, Beth and I both figured a trip to the ER would be necessary.  They ordered an abdominal CT as a precaution, only to find a fairly large mass that appeared to have ruptured and bleeding.  He was as PCH within the hour, and in the OR the following afternoon (while they attempted to pinpoint where they were going to go in and resect).  They were able to remove the whole tumor, which turned out to be adrenal in nature, requiring removal of his right adrenal gland.  The surgical team reported no signs of invasion into any of the surrounding organs (kidney, liver), and subsequently Nate’s been doing quite well in his surgical recovery.  He’s down to two access sites (central line and peripheral IV) without any sign of site-infection, which is a great relief…and continues to improve post-op.

Histology and pathology of the tumor are pending, as they tend to take their very careful time with diagnosis of a tumor.  Because of the rupture, they do have a concern of what they call “spillage” in that cancer cells were floating in his abdomen for just shy of 24 hours.  At this point, there could be upwards of 10 or so possibilities that we’re facing…each with varying courses of action.  They’re leaning towards neuroblastoma but trying  not to get ahead of the diagnosis.  A PET/CT scan of the chest prior to surgery did show no indication of any spreading to the lungs.  A battery of tests to rule out cardiac involvement is next…and a bone scan  today to ID any possible bone mets.  From there, it's more tests to continue to rule out further complications before we dive headlong into treatment.

We'll continue to do our best to get the word out.  The vast majority of the sadness and drama is from us...Nate is fairly unfazed.  These types of things tend to have very positive prognoses in children, but we have to get through the preliminary grind before we get him on the road to recovery.

Thanks for listening,

-Christopher.

Nate Updates

Last night, Nate was goofing around and slammed his belly into our ottoman. He started complaining a lot of pain in his belly (and he's not a complainer) and then began throwing up. We decided to take him to Scottsdale Shea ER. They did a CT scan and found internal bleeding and a mass near his kidney. We were air lifted to PCH. He's been given a transfusion and is now under anesthesia getting a PET scan and then off to surgery. Not sure what surgery will involve until they get in there, obviously they will try and remove the mass. We'll let you know more when we know more. He has been very brave. Please pray for my sweet Nater Tot, that the surgery goes well and he will be treated quickly and completely.

Surgery went very well, as well as we could have hoped for. They were able to remove the entire mass (along with the adrenal gland it was growing on). The mass was huge, about 2x the size of his heart (though we know his HEART is much larger than any tumor could ever be) and was pushing his kidney and liver way out of the way. He did very well and was groggy but awake and talking right after. Thank you for all the prayers, thoughts and notes. I'm reading them all, please forgive me if I fail to respond. Please continue to pray for a speedy recovery from the surgery and that we will hear good news, quickly from pathology (it could be weeks).


Thank you for thinking of and praying for Nate. These are the texts I sent out yesterday with the information we know right now.