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.