Treatment Options

Many of you have been asking about New York. When we are going and why? Well, the short answer is...we aren't sure yet. I will try and explain all of the information we have floating around in our heads as best as I can. If we stayed in Phoenix for all of Nate's treatment, this is a simplistic breakdown of what it will look like.

Surgery (done)

Chemo Round 1 (done)

Chemo Round 2 (done)

Stem cell harvest (done)

Scans (done)

Chemo Round 3 (receiving now)

Chemo Round 4

Chemo Round 5

Scans (though these could possibly be done earlier)

More surgery if necessary

Chemo Round 6

High dose chemo and stem cell transplant

Radiation...probably to the abdominal area (I think this is when this happens, though I'm not positive)

Antibody treatment (up to 6 rounds depending on how many he tolerates)

So, where does MSKCC in New York fit into the picture? 

First, I'd like to help everyone understand the importance of the decisions we are making for our little boy. We are very confident that Nate will beat this disease, but it is not easy and we have to consider the realities of this disease as we are deciding on the best treatment for Nate. High Risk Neuroblastoma is a nasty, aggressive cancer. Our Dr., who is not that old, says that he remembers a time when almost all of the children diagnosed with this cancer died. They've made great strides in recent years and research is constantly moving forward...6 months from now there could be a new, major development. What percentages of beating this are we looking at? Our Dr. says that every child has a 100% chance of beating this, and we wholeheartedly believe that! Not only as a mom to a very special, strong little boy, but also as a pharmacist, I understand that percentages are just percentages and mean nothing to the individual patient. With that being said, Chris and I are still considering all the facts when making our decisions. With the standard treatment of 6 rounds of chemo, and a stem cell transplant they give high risk patients a 50% chance of survival (I've seen numbers online as low as 20-30%, but our Dr says the latest research shows about 50%). Adding antibody therapy at the end of treatment is shown to increase survival by about 5-20%, depending on how many antibody treatments the kids can get through, up to 6 treatments. Radiation and successful surgery also increase the rate of survival.

So, the numbers aren't too bad really, but the treatment he has to go through is rough...really rough. The side effects are common and harsh. Heart failure, kidney and liver damage, hearing loss, trouble with math, short and long term memory problems, infertility, rotten teeth (even the adult teeth), secondary cancer later in life, and even possible death due to infection are just a few. Neuroblastoma survivors are also shown to have lower rates of marriage and lower paying jobs. Nate has always been a tall, smart, handsome, healthy boy...it kills me that he only has had a chance to be that for 2 short years and everything he is going through now, will change the course of his life forever. I know you're going to say (and I have said myself) that this IS the course of his life, we just didn't know it until now...and I know this. Still, when you are snuggling your perfect little newborn you want only the best of everything for them. Nate is a curious, precocious 2 year old who had a gorgeous mop of wavy red hair. We used to always talk about having to chase girls away from the house during the boy's teenage years, with Wes's blue eyes and Nate's touchable hair. I've always said that I can't wait to see what kind of adult Nate will be because of his independent and playful spirit. I can't handle the thought of him struggling in his life because of these treatments we are putting him through.

Chris and I are trying to figure out a treatment plan that will get rid of the cancer completely and leave Nate with the least amount of side effects...which is where MSKCC comes in. They do things a little differently there. They have Drs there that are neuroblastoma experts, they also have the absolute best neuroblastoma surgeon.  Of the about 700 cases diagnosed each year, they treat about 250-300 of them...PCH treats about 10-15. That doesn't mean PCH doesn't know what they are doing. They follow a protocol from Children's Oncology Group (COG) which is a network through the rest of the country that treats the rest of the kids that don't go to MSKCC. MSKCC has found in their research, that a stem cell transplant is not necessary....they haven't done them for 10 years. Their studies show that they get the same results (percentages) as the COG protocol, but they skip right from chemo to antibody treatment. They also do antibody treatment for longer. COG (and PCH) will do up to 6 treatments. MSKCC will keep doing them until the child can't tolerate it any longer.

So, are we going to New York and when? Chris and I had decided pretty quickly that if Nate needed more surgery to remove either of the 2 remaining spots, we would go to New York. The surgeon at MSKCC has been described as "walking on water" by everyone I've spoke with...including Nate's oncologist. Apparently he doesn't even take credit for his own skill...he says that God gave him the gift to remove these tumors. This is the man we want taking care if our little boy. It looks like we will indeed be going to MSKCC for surgery after round 5, probably sometime in November. Our Dr is starting to get this in the works for us.

We have also considered skipping the stem cell transplant and just going straight to antibody therapy in New York. If we did decide to skip the transplant...Nate would not be able to get antibody at PCH because their protocol requires the transplant to get the antibody. The stem cell transplant is no joke. Basically, they give Nate the highest amount of chemo that they possibly can without killing him. It wipes out all of his bone marrow and immune system. Then they rescue him with his own stem cells. It is so much chemo that if they didn't give him his stem cells back, it would take so long for his body to recover (if it ever did) that he would die of some sort of infection. Because they can rescue him though...it will take about 4 to 6 weeks. He will be in total isolation, in the hospital for 4 to 6 weeks, constantly being monitored and the Drs will treat each complication as is comes. It is possible to die from the transplant, but their success rate of getting patients through it is very good...above 90%, I think.

This decision is much more complicated for us. Every Dr has told us that whatever decision we make will be the right one, but I honestly feel the opposite. If we don't do the transplant and the cancer relapses...I will never forgive myself. If we do the transplant and Nate suffers devastating long term consequences...I will always wonder if we should have skipped the transplant.  Things can always change, but at this point, I think Chris and I have decided to do the transplant. Whatever long term consequences Nate experiences, we can figure out a way to deal with it. We can not, however, deal with the cancer winning and losing him. This cancer likes to relapse and there is currently no treatment that is known to work for relapsed neuroblastoma. We need this to go away and stay gone...forever! At this point, after speaking with many Drs, we feel like we need to hit this thing with guns blazing.

Now for antibody treatment. We can stay at PCH for antibody treatment, or go to MSKCC. Simply put, Nate will be injected with antibodies that go in, find any remaining neuroblastoma cells and force them to mature and die. The infusion is very painful and eventually the body will make antibodies to the antibody and you have to stop treatment, but the more treatments you can get them through, the better. The more chances the antibody has to find every last neuroblastoma cell. The treatment also has no known long term side effects. MSKCC has been doing this for over a decade and they are the experts. They use a mouse antibody and are currently trying to humanize it, which will cause less rejection. I heard they might have just gotten approval
for this. PCH uses some sort of manufactured human antibody that causes less rejection but worries me because it is not the mouse antibody that MSKCC knows works well. We need to do much more research on exactly which antibody PCH is using. The other thing to consider is that MSKCC gets ALL of their kids through 6 treatments and sometimes many more...they just keep going. I think the most they've gotten up to is 2 years of treatments. Our Dr said they've been lucky and have gotten all of their kids through all 6 treatments at PCH (that's not necessarily the case throughout the COG...sometimes they only get 3 or 4), but I recently figured out that PCH has only been doing antibody therapy for less than a year and have only got maybe 3 kids through it. Three!!! Holy crud. I don't think that's good enough numbers for us. So as of right now, we are strongly considering going to New York for Nate's antibody treatment. It would be something like 1 week in NY, 3 weeks home for 4 treatments, then 1 week in NY, 8 weeks home indefinitely (probably up to 2 years).

It really is so much to consider.  I think about it constantly and it weighs very heavy on me. How are parents supposed to make these decisions for their child? If only we could see the future...but we can't. So, we're taking these decisions one step at a time and trying to prepare for any possibility. We are going to do whatever we have to, to get Nate to the other side of this as strong and healthy as he entered it but it's not going to easy. We will absolutely go to New York of that's what we determine will be best for him. Unfortunately, it will be financially and logistically difficult for us. We are very fortunate and are thankful every day that we are in a position to make these kinds of decisions for Nate (many families do not have any financial means to explore other options for their children), but we have also worked very hard for everything we have and would be devastated if we had to lose our house. So, thank you to everyone who's planning fundraisers or us. It means the world to us and we can't wait to pay it forward one day to other families in need.

We are doing as much research as possible and praying and praying. We may not know the "right" answer, all we can hope to do is figure out the "best" answer for Nate. So far, things seem to be falling into place.

Pain

Where was I 10 years ago today?  I had just graduated pharmacy school a few months prior and was living with my mom and aunt, preparing for my wedding in 2 months.  I was asleep when I received a call from my college roommate to turn on the TV, "the world is ending".  I turned on the TV to 2 burning towers.  My mind immediately raced to our good friend Brian, who was going to be a groomsman in our wedding and  who lived in New York and worked downtown somewhere.  I quickly called Chris and asked if Brian worked near the World Trade Center...Brian worked IN the World Trade Center.  We soon found out that Brian was late to work that day.  He even managed to make it to our wedding 2 months later.  Going to work later that day was a totally surreal experience.  The roads and the stores were empty.  Everything was uncertain.  We are thankful every day that we don't have a story of losing a loved one that day...unfortunately, there are far too many that do.

I woke up this morning on the 10th anniversary of September 11,2001, thinking of pain.  I've experienced much pain in my 33 years.  The pain of drug and alcohol addiction in my family, the pain of an uninterested father, the pain of infertility, the pain of loss, depression, obesity, disappointment, abandonment, isolation, regret...and now the pain of a sick child.  Still, there is so much more pain that I have never experienced, and hope to never experience. Much like we all felt in those first days, weeks and months after September 11, 2001, everything is uncertain for us now.

Why is there so much pain in the world?  Original sin?  So that we appreciate the joy?  To test our faith?  Why?  Of course I have no answers, but for now I'm trying to focus on the blessings.  For every pain I've experienced...there is always something that is worse, and something good to come out of it.  Sure, my child has now been given a percentage of a chance at life. Seven years ago, I wasn't sure if I was ever even going to have a child.  Some children die in accidents and have no chance at life, we are thankful for the chance to fight.  There are also the little blessings along the way.  The new tower at PCH with the big, private rooms, the fact that I went part time at work 2 years ago and we don't rely on my full time salary, our trip to San Diego in June which we have ALWAYS taken at the end of July or beginning of August and would have been missed if we didn't move it up because Johnny was due to be born, so many little things along the way.  Then of course there are the big things, finding the tumor fairly early the way we did, Nate's good response so far to therapy and the love, support and generosity of our family, friends and complete strangers.  Almost daily, I am brought to tears by the kindness of those around us.  Maybe the pain is there, so that we can appreciate the joy.  That really sucks though.  Why can't we just see the joy?

I don't think the joy will ever replace the pain...but maybe, it can dull it just a little.  So, for now I will try my hardest to focus on the blessings and the joy.  The only other option is to give in to the pain and give up.  Sometimes it feels like I might just do that...then I pull myself up and remember that it is NOT an option.  We must continue on and fight.  Thank you to all of those who fought on September 11, 2001 and every day that has followed.  Thank you to those who lost their lives that day and to those who survived to tell about it, to the fire fighters, police officers, soldiers and family members to all.  Thank you for reminding me today to keep fighting.

Round 3 Begins

After several urine samples, no one is quite sure where the blood came from, but it was decreasing with each sample and no infection was detected, so they started the chemo this morning. The whole blood in the urine thing makes me a little nervous though. Yesterday after the procedures, Nate had two different instances where he grabbed his crotch, pulled his knees to his belly and screamed, "Owie, my penis, my penis hurts!". Then it was over and it hasn't happened again. So strange. I couldn't see anything wrong with his penis or penis area, but they found blood in his urine. I can only figure he must have had some small cut or something and it burned when he peed, now it's healing and not bleeding or hurting anymore?? This is why I have gray hair.

Chris was with him all morning and I relieved him in the afternoon to go to a work function. Nate was taking a long nap (knocked out from the antinausea medicine) when I got there. I was exhausted and laid down to close my eyes for a second, when I heard Nate start throwing up. It happened to be exactly time for another dose of antinausea medication...I guess Nate knew this. I got him cleaned up, he got more medicine and was good to go.

We watched some toons, played in the play room and wandered the halls. We've decided that we can not leave the room without our hats. Tonight, he chose his "snow hat" and let me wear his bear hat. He ate a big dinner and a red "posisicle" for dessert that I hope Chris won't be cleaning up in the middle of the night. I tried getting him settled in for bed but he was literally jumping on the bed, so we put on our hats and headed out for a late night patrol of the hallways...complete with marching. I guess I finally wore him out because he fell asleep right before Daddy came back for his sleepover.

I also found out that this round of chemo is actually only 4 days. So, Nate will still be able to come home on Tuesday even though chemo was delayed a day. This is good news, not only because we love to have him home, but also because it makes our Wednesday less complicated with my long work day. Yay for more good news!

Facebook

Our friends are using Super Nate's Facebook page to keep everyone informed about fundraising efforts for Nate's care...and eventually for research and to help other families.  Please take a second to "like" Nate's Facebook page.

http://www.facebook.com/SuperNateDinoffria

They have also made a twitter account...though I admit, I don't totally understand twitter.  If you prefer twitter, you can follow him there.

http://www.twitter.com/SuperNate_D

Thank you to everyone for your love and support!!

For Ronan

In May, I was up late one night surfing the Internet and stalking Facebook. A high school acquaintance had posted a link to her family's blog and I clicked over to read her post. I scrolled back and read a few past posts, including one where she showed her son releasing a balloon for a little boy named Ronan and put a link to Ronan's mom's blog. I clicked over and read the most raw, real, heart wrenching story I had ever come across. Ronan was a beautiful little boy who was taken by cancer in May, a few days before his 4th birthday. My family was all asleep and I wept as I read his mother's brave and beautiful account of sweet Ronan's last moments on the earth. I then went in to all of my babies rooms, my face still wet with tears, and kissed them all, thanking God for their health and praying that he would continue to bless them and keep them safe.

Then...July 7th came, and our world exploded. In the first few days of diagnosis, when the word "neuroblastoma" was being thrown around, this little boy's story started to gnaw at me. I knew it wasn't a good idea for me to start searching the Internet, because I was still in shock...but I felt like I had to know that Nate had something different than Ronan had. I found Ronan's blog and there it was, staring at me...NEUROBLASTOMA. It actually ended up being a good thing because Ronan's mom, Maya, had a bunch of helpful links on her site for parents of kids with this disease. I wanted to write to her but decided against it. It had only been 2 months since Ronan's passing, I didn't think she needed to be burdened my story.

I thought about her and her sweet boy constantly for the next couple months and finally decided that I wanted to contact her to let her know that she and Ronan had inspired me to cherish my family more...even before we knew that the same monster was growing inside of Nate. I sent her a short email and almost immediately received a response from her asking how she could help us. I am in awe of the strength, bravery and compassion Maya has shown. She is living with a deep, searing pain every single moment and she is still willing to reach out to help another little boy and his family.

I met with Maya last week to seek some advise about this path we are on...also to get and give a hug. We talked, cried and held hands as she gave me a number of tips that will make this process smoother for us. She said she would be there for us, no matter what we need.

Maya has a foundation, The Ronan Thompson Foundation, and she and her "mafia" are raising money for research and to help other families. I really feel like Maya will make a real difference in this disease. She is determined to fund research that will find a cure and I believe she can do it.

Ronan was a beautiful little boy with haunting blue eyes who she describes as full of life and mischief. She says that he was totally obsessed with Star Wars and they always used to say "I love you to the moon and back" to eachother. I met with Maya at the end of last week. Then, this weekend Nate wanted to watch Star Wars and play light sabers...a little strange because as much as Chis and I love Star Wars, neither of our boys is way too interested in it. Nate has also been OVERLY mischievous....I've been tearing my hair out a bit. Then, Tuesday morning Nate dug through our DVDs to find Star Wars and insisted on bringing it in the car to take Wes to school. On the way home from dropping Wes off, Nate hollered at me to turn the radio down...I did..."Mommy, I love you to the moon and back", he said. I almost drove off the road. This is something I have said before...mostly with Wes...but it has never been a "thing". Maybe it's Ronan, maybe it's not...but I feel him around us, helping Nate fight this cancer, helping him through...and it makes me smile.

This morning, I found out that Maya is nominated for a blog award on Babble.com for moms that are changing the world. She is in second place and the winner receives $5000. Maya said that if she wins, she will donate the money to Nate!! It would be such a blessing to us as it would help to alleviate some of our financial burden. I am so blown away by the generosity of everyone around us. Today, Maya wants to help us "cure" our little boy. Tomorrow, I swear I will help her raise the money for a real cure.

So please, click on the link below and go to Babble to vote for Maya Thompson! Post it on your Facebook page and ask your friends to vote too!

http://mom.babble.com/mom/mominations/mominees/charity/maya-thompson

Results

Thank you to everyone for your thoughts and prayers.  Keep them coming...because they're working!  Nate's procedure went well.  It took a long time, but my mom and I managed to pass the time reading magazines and chatting.  They called us back to recovery and he woke up slowly but was soon his full-on goofy self.  The nurse asked if he always acted this way after anesthesia.  I said, "No...he just ALWAYS acts this way".

The Dr. called me with most of the results a few hours later.  You may remember that Nate had two areas left behind after tumor removal. One along the edge of his liver, and one down between his kidneys that I guess was along his aorta.  The spot along his aorta is GONE!!!  That's right, GONE!  The Dr. says he can see scar tissue where it used to be, but it is not lighting up on the MIBG scan (the scan specific for neuroblastoma).  The area on his liver is a little more complicated.  I guess after he had his initial surgery to remove the tumor, his liver was full of fluid, which is normal after major abdominal surgery.  On his last scan, the area on the liver looked like it was wrapped around the fluid filled area of the liver.  The fluid is now gone from his liver which is good...and expected...but the shape of the tumor has completely changed in to a ball.  The shape has changed so dramatically that it is impossible to know if the area has shrunk and is responding to the chemo.  The Dr. will be sending the scans off to Memorial Sloan Kettering Cancer Center (MSKCC) in New York to get their opinion, but he is pretty sure it will just be an opinion...not fact.  If he had to venture a guess he would say that it had indeed shrunk...but it's just a guess.  The good news is that the area is operable...he thinks it will indeed have to be removed with surgery.  The surgery won't happen until after round 5 of chemo, maybe some time in November.  Chris and I had already decided that we want to take Nate to New York if he needs any more surgery.  We are forever grateful to the surgeons who removed most of Nate's tumor in July, but there is one Dr. in this country (maybe the world), who is the absolute best Neuroblastoma surgeon...and he's in New York.  We want our baby boy operated on by the absolute best.  We want this spot gone...100%.  We have not received his bone marrow biopsy results and don't expect to until early next week, but we expect nothing but clear bone marrow.  It was clear before, there is no reason why it wouldn't still be clear, so we are really not worried.  The final test result we got back was the ECHO (measure of how healthy his heart is).  They check this because chemo can damage the heart and he must have a strong heart to continue treatment.  The Dr. said they give it a score based on a number of different factors and the top score is 70.  Nate had a 64 prior to chemo treatment...and had a 65 today.  Leave it to Super Nate to use the poison to make him stronger.

He is having a sleepover at the hospital with Daddy tonight, waiting to start chemo.  They found some blood in his urine and have to determine where it is coming from, especially if it is an infection, before they can start the chemo. Hopefully, he can start tomorrow.  It's a little frustrating because we don't want to delay treatment any further, but we also want to make sure that Nate is safe.  Please pray that they will be able to figure out where the blood is coming from and resolve it easily, so he can start chemo tomorrow, and that this round goes smoothly.

Thank you so much to everyone who thought about Nate today, to those who prayed for him, to those who called, sent a text, wrote and email or wrote a note on Facebook or this blog.  Whether I know you personally or not, it means so much to us and to Nate, we all feel the love and support and could not do this alone.  There are twists and turns along the way, good days and bad.  I'm marking today in the "good day" column.  We'll take as many as we can get.

Recovery

All done with biopsy and scans. Having a snack and waiting to go to his room.