Long Overdue Update

I used to always wonder what I did with all my time before I had kids.  Now, I wonder what I could have possibly been doing with all my time pre-cancer.  Life is C-R-A-Z-Y right now!  I am terribly sorry for the lack of any updates on Nate (save a few quick Facebook updates), but the last two weeks have been so incredibly and completely crazy, busy that I have barely had time to catch my breath.  Let's see where I left off...a week ago, Monday, I took Nate to clinic and everything was holding steady.  They decided to remove the lipids from Nate's TPN and see what happened with his appetite.  I have been back and forth on the phone with MD Anderson for months regarding possibly taking Nate to Houston for proton therapy radiation instead of traditional radiation.  I received a call from them on Monday after clinic, for an appointment the following Tuesday!  It was perfect because Wes's spring break is that week and we could all go as a family...but, one week didn't give me a lot of time to make all the travel arrangements I needed to make for our family of 5.  I spent all week making phone call after phone call to try and get everything arranged.

Wednesday was his first day, after the lipids were removed, and my mom took care of Nate while I worked. She kept a log of what he ate throughout the day, and he ate SO good. I took the log to clinic with us on Thursday and everyone was quite impressed with his eating and weight gain. Nutrition decided to stop his TPN altogether and just keep him on IV fluids at night. I was told that Nate may have to continue IV fluids at night for up to six months. Until he consistently drinks 40 to 50 oz a day...and more in the summer...he needs the fluids. The chemo and antibiotics he received during transplant are all really hard on his kidneys and they want to make sure that he gets plenty of fluids to help protect those kidneys. Randomly, Nate's WBC count was slightly elevated, which could mean the start of a possible infection, so they took cultures from his central line, even though he hasn't had any fevers at all.  I didn't think too much about it.  Nate has been doing SO well.

Friday morning at 4:30am, we got a call...Nate's cultures grew bacteria...bring him to the ER immediately.  Let me tell you...there were a few "F" words flying around my house that morning.  Thoughts and emotions flew through my head...WHY?!  Why does he have to get a line infection now?!  How did this happen?  Could we have prevented it?  We just got out of the hospital...how long is he going to have to be in again?  What are we going to do about Houston?  I worked so hard all week to make all the travel arrangements and now everything is out the window.  Are we ever even going to make it to Houston to check out this possibly very important option for Nate?  Wes has spring break...are Nate and I really going to have to spend Wesley's entire spring break in the hospital?

Then, the real sadness hit when I realized that I not only had to tell Nate that he was headed back to the hospital after only being home for a week and a half...but, I also had to tell Wes that he was not going to get to go on a trip to Texas (which he was so excited about).  I screamed, I cried, I had a panic attack for about 2 minutes...then I jumped in the shower and got ready to take care of my boy.

When I told Nate we had to go to the hospital he cried and said, "We just got back from there!".  We got to the ER and went through the regular motions.  More cultures to confirm that it wasn't a contaminant, start antibiotics, monitor vitals, and head up to the 7th floor.  Once we were up on the floor, Nate was much more comfortable.  I grilled the doctors on if there was any way possible that we could still get on a plane Sunday...this was Friday.  The only way it was going to happen was if the positive culture was caused by a contiminant (something that got in there accidentally while it was being collected).  If the culture taken in the ER stayed negative for 48 hours...they would let him out Sunday morning.  Sure enough, contaminant it was.  It bought Nate 48 hours in the hospital...but he came bursting through the garage door Sunday morning..."I'm home!!!".

I continued packing and planning, like we were going to be able to leave Sunday afternoon and if it didn't work out, then we would cancel.  Luckily, we were able to get on that plane Sunday afternoon.  We were very fortunate to get a ride to Houston on NetJets through Corporate Angel Network.  Normally, Corporate Angel Network will only fly a child patient and 2 escorts.  We flew with another little girl we know, who is getting treatment in Houston, and her mom and Grandma.  They had an extra seat on the plane, and Ellie could sit on my lap...so, they let all of us fly.  It was so awesome!  They were so nice!  They had all sorts of food and snacks and movies for everyone.  Other than a couple overly excited, antsy kids...it was a great flight.

 We were also fortunate enough to be able to stay with our good friends, Stephanie and Charles.  They graciously opened their beautiful home to our crazy family...we more than tripled the occupancy (and noise level) of their house!  Stephanie even moved her work schedule all around so that she could watch Wes and Ellie for us while we took Nate to his appointments.  The kids absolutely love Steph and Charles and had a great time visiting them, even though Nate can't really get out to do much.

The first day we were there, we took the kids to a park for a picnic, rode the small train around the park and let the boys eat some ice cream by the pond.  The second day, we had Nate's appointment at the MD Anderson Proton Therapy Center.  Honestly, I have been back and forth on the phone with a representative from the center for months.  Getting them the records they needed, trying to get more information about proton therapy for Nate and arranging appointments.  It was a very frustrating process.  I never got any of the answers I was looking for.  I almost gave up several times.  I'm glad I forged ahead because actually visiting the center was a whole different experience then trying to communicate with them on the phone.  Everything was very personal and informative, everyone was very nice.

So, what is proton therapy and why are we considering it for Nate?  Proton therapy is a more specific form of radiation that more accurately targets the area you are trying to radiate and leaves the rest of the surrounding, healthy tissue alone.  This can be especially important in things like brain tumors, where you only want to radiate the tumor and leave the rest of the brain alone.  Nate's case is not that straight forward.  First of all, they are not radiating a tumor (there are no more tumors left in his body), they are radiating the tumor bed (where the tumor originated from).  They do this because neuroblastoma studies show that the combination of chemo, surgery and radiation is very effective at not allowing the tumor to regrow in the original area (relapse occurs in other areas, but that's a topic for another time).  So, how will Nate benefit from proton therapy?  What organs and structures will be spared from unnecessary radiation?  Those are the answers we have been searching for, for months and don't completely have the answers to yet.  The problem with proton therapy is that it is fairly new.  The oldest machine is about 20 years old and they have only been doing it in kids for 10 or 15 years.  The true, theoretical, benefit to Nate will be decreasing his risk for secondary cancers later in life.  They don't have the research yet to see if this prevention is really happening because secondary cancers don't show up for 20, 30, 40 years or so, and proton therapy hasn't been around that long.  We do know that it is equally as effective as traditional radiation.  So at worst, it will be the same...at best, we can save Nate from cancer later in life.  All of the chemo drugs he has gotten, as well as even the proton therapy...could cause cancer later in life.  So, it could still happen, but if we can take away even a little of his risk...shouldn't we do that?  We think that we should.  We plan on Nate living a long, healthy life and we want to try to make the decisions now that will help him do that.  The only problem is that proton therapy is only available in 10 centers in the US right now...with 4 more under construction (one being here at the Mayo...in like 2015...a little too late).  So, it would mean separating our family, once again.  We don't take this lightly and want to make sure that this therapy will actually provide a benefit to Nate, before he and I go and move to Houston for several weeks.

 What did we find out?  Well, the Dr. in Houston said that if Nate were his child...he would do proton therapy.  We decided that we wanted them to do the radiation simulation on Nate, to get the full picture.  Wednesday, Nate was scheduled to be sedated and have the simulation done at 1pm...and no eating before hand because of the anesthesia.  We successfully distracted Nate with a trip to the park and he was such a good boy.  He only cried for food a few times.  They put Nate under anesthesia and did a detailed CT scan of his abdomen.  The doctors will meet over the next week to discuss Nate and his treatment plan.  They will also do a work up of a traditional radiation treatment plan, so we can see the difference.  The Dr. thinks that they will probably save much of Nate's liver, his other kidney, his stomach and bowels from unnecessary radiation.  We will see what the actual simulation shows.  Most likely Nate will receive 12 radiation treatment, Monday through Friday, with anesthesia every day.  This is the same with proton or traditional (photon) radiation.

The simulation went well and we should hear from MD Anderson next week some time.  Nate woke right up from anesthesia ready to chow down and we spent the rest of the day playing with Stephanie and packing.  Corporate Angel Network was not able to find us a corporate flight home but was kind enough to get us 3 commercial tickets home...so, we only had to buy one ticket.  We are so, so grateful because the ticket prices at the last minute were through the roof!  We got on a plane Wednesday night and headed home.  All three kids were so, so good on the flight.

We got up early this morning and headed to Good Sam for Nate's radiation consult with the local radiation oncologist, about traditional radiation.  I had spoken with him once before and he told me that he believes in the theory of proton therapy saving normal tissue from future cancer in kids and tells parents to go if they can.  Today, he told us that if Nate were his child he would take him to Houston for proton therapy.  Wow!  Really, how can you argue with two radiation oncologists telling you to take your child to Houston for treatment?  So, it looks like we will probably be heading to Houston for treatment.  Nate is on the schedule already to begin treatment April 9th...hopefully for just 12 treatments.  We should have the full results of the simulation and treatment plan some time next week and will make our complete, final decision then.

The plane tickets are pretty affordable right now, so I think I will buy a bunch of tickets now, before the price goes up.  Stephanie and Charles have welcomed us with open arms and we are so, so grateful.  It will be nice to stay with "family" and not be alone in a city I don't know well.  We are also planning to come home on the weekends so that our family can be all together for a couple days each week during the treatment.  We are also trying to plan for Jen to come help me for a few days.  Jen, Stephanie and I met in pharmacy school and have been the best of friends ever since.  I think it will be a little fun for us all to look forward to.  Nate won't know what to do with all the Mommy and "Auntie" attention that we will lavish on him!

 I want to take this opportunity to again thank, not only our amazinly supportive family and friends...but, all the people that have helped us financially in all ways big and small.  Obviously, the Super Date for Super Nate was a huge success, but all along the way there has been help pouring in.  This decision...this moment...this treatment, has been made possible by you all.  We have been able to study the facts and speak with the experts and make, what we believe is, the best decision for our son based on this information.  We didn't have to think about finances or the care of our other children.  We knew that if this is the best decision for Nate...we can do it...thanks to all of you.  How amazing is that?!  One of the major problems with childhood cancer is the limited funding that goes into research for our kids means that many treatments and studies that are saving children's lives are only available in a handful of areas of the country.  Many, many, many children must travel if they have any hope of getting treatment that may save their life.  Many families, can not travel.  Many families don't have the option of searching for the best treatment for their child, they must accept the treatment that is available at their home hospital.  We feel so grateful and blessed that we have so many options for Nate.  This decision to separate our family again, is far from an easy one.  Thank you for helping to give us the opportunity to make this difficult decision.

Now, how is Nate?!  I can not even explain in words how great he is!  I keep saying that he is a "real boy" (Pinocchio style) again!  He is eating like a horse and gaining weight.  His weight is back up to what it was before surgery in December.  He is playing and playing.  His energy level is great and he is getting stronger and stronger every day.  Today, he climbed up the rock wall on our play set...boots and all.  I know, TMI, but he is pooping actual, solid poop!!  After 3 months of diarrhea...this is HUGE!  Really, there is no way to describe how sick he was in December and January and how hard it was.  He was starting to get stronger prior to transplant...but, never in my wildest dreams did I think he would be doing this good, this soon after transplant.  You would think that going through one of the harshest treatments there is, would knock him down pretty good considering he entered at such a weakened state.  Nope, not Nater Tot!  Those must have been some super, duper cells!  He went to clinic this afternoon and his platelets are up, almost to normal, and all his numbers look great.  They have also cut his IV fluids in half because he is drinking so well.  He is so completely, over the top cute.  He never stops talking and says the absolute sweetest, funniest things.  Someone at the hospital this morning was drawn from another room by his sweet, little, jabbering voice and just had to come meet him.  She asked, "How do not just laugh all the time?"...oh, I assured her, between him, Wes and Ellie, we DO laugh all the time!  He is also full of piss and vinegar...and I love it!

Super Date for Super Nate

Wow!  Really, wow!  I will never be able to express in words how Chris and I (and the rest of our family) feel after Nate's event last night.  It was nothing short of completely incredible.  There were SO many people there...I guess the final count was over 300!  The line to get in was wrapped around the building and there was a constant line all night for dinner.  There were so many people that we knew and that we did not know...all there to support a sweet little boy fighting with all his might.  Miss Arizona was there and she is a beautiful person inside and out, who truly cares for and does a lot to support children with life threatening illnesses.  The parent's of another little fighter, Elizabeth (the family who delivered the Elf on the Shelf), were there and we were finally able to officially meet.  High school friends, who I haven't seen since high school and my good friend Stephanie even surprised me and came from Houston.  So...many...people.  Thank you so much to everyone who came out to support Nate.  There were so many people that I don't think I could have said hello to and met everyone, but your love and support means so much.

It took so much work and love for this event to come together, I don't think I even know the extent of it.  There were so many people involved that we don't even know where to start thanking people.  Coach and Willies was completely amazing.  Not only did the owner, Eric, selflessly donate the restaurant time and space for the event...but, the manager, Jason, helped our family and friends in an endless number of ways to put this on.  He helped plan, sat through meetings with them and fed them.  Have I mentioned that the food is delicious!  Really, an incredible business with some REALLY incredible people behind it.

There were SO MANY raffle and silent auction items that I really wasn't able to look at every single item.  There were just too many...and they were all incredible.  I was told that everyone who gave an auction item, gave without hesitation and without question.  Such complete and total generosity, like I have never seen before.

Then there is the Super Crew!  All the people who spent endless hours planning and preparing for this event...have I said incredible yet?!  Everyone couldn't believe how well run, professional, and most of all FUN, the event was.  They did the most phenomenal job!  I only have an inkling of how much work this was to put together. Emily, Alison & Joe, Lily, Taylor, Gary & Sandy, Mary & Dave, Donna & Ray, Kim & George, Liz & Chris, John & Barb and Shay...you are all, simply the best!  We also want to thank Sean & Jen, for their love and support and for getting everyone together at the very beginning.

I tried to thank everyone at the event and I got most of my words out, around my crying, though I'm not sure if anything made sense around all the blubbering.  The fortune Nate is holding, in the picture above (the best of the bunch) says, "Focus on your long-term goal".  That is precisely what you all are giving us the privilege to do.  Focus on Nate's long-term goal...being CANCER FREE FOR LIFE.  As we've learned over the last 6 months, the road to this goal is twisty and turny and rocky as hell.  At the beginning of this journey we had so many questions.  How were we going to get Nate through this?  How were we going to continue to work, pay the bills, take care of our house, pets, our other children?  How were we going to be able to make sure that Nate got the absolute best care, to ensure that he would beat this forever?  Getting Nate through these treatments is hard, really hard.  It's more than a full time job.  You all have taken so much of the burdens, big and small, from us.  Everything from meals, to laundry, childcare and finances.  This event raised so much more money then Chris or I could ever have hoped or dreamed for Nate's care.  We really feel like we can now financially handle any curve balls this treatment throws at us.  This frees up so much of our head, heart and soul to now solely concentrate on Nate.

Our sweet little boy was well taken care of at the hospital last night by Tracy, who once again selflessly offered to miss the event and take care of Nate, so that Chris and I could attend.  I wished that we could have brought him, for everyone to meet.  Once again, cancer treatment had other plans.  He would have liked seeing his face everywhere, but honestly would have had no idea what the night truly meant.  Can you imagine, Nate as grown man, fully comprehending the love and support he received as a 3 year old child in the fight of his life?

I will tell him this story every day.  The story of an entire community of people who came together to love, support and lift up a special little boy and his family in their time of need.  An entire community of the most giving, kind hearted, generous, truly caring people I've ever met.  I hope he will grow up knowing how special he is and how important it is to take care of others, in any way possible.  There have been times in my life that I wondered if there was any good left in the world.  After this experience and especially seeing and feeling it all together in one place last night, I will never question the good in the world again.  There are so many beautiful people out there.

We are truly blessed to have so many of you beautiful people in our corner.  The love and support we feel from all of you every day, and especially feeling it all in one place last night, is just what we need to help us get Nate throught this next, most difficult part of his journey.

I know that I am not adequately expressing our gratitude to everyone who came, gave and helped plan this event last night.  Words can not express our feelings.  If you were there, I think you know.  You could feel the love in the air for miles around.

Blood Infection

It's always something.  For about the last week and a half, Nate has been having these episodes where he would get uncomfortable and moan, then he would get warm, and then poop.  He is still fighting the c. diff. infection and is having really bad diarrhea.  These episodes were mostly happening after bedtime, almost every night.  I mentioned it to the doctor last week and he thought Nate was clearing the toxins from the c. diff. from his system.  A few days ago, I started to think that these episodes were also happening a couple hours after we flushed his lines, which we do at bedtime.  On Monday, I decided to flush his lines before nap to see if he got warm and uncomfortable during his nap instead.  Sure enough, two hours after flushing his lines, it happened.

I called our nurse clinician on Tuesday morning and asked if we should have his lines cultured.  She thought it was unlikely that he had a line infection because he would be much more sick and feverish, but she was going to check with the doctor.  I flushed them at naptime again and again he got a little warm, two hours later.  Our nurse called that same afternoon and said that the doctor did want to culture the lines to be safe, so we made an appointment for Wednesday morning.

My mom brought Nate to the clinic on Wednesday morning, because I had to work, and they had a rather nice visit.  His weight is up 1 kg from his lowest point, which means he has gained a half a kg a week.  They said that is what they would aim for him to gain with the NG tube in, so I am very happy with our decision to have it removed.  Really, I don't feel like he has even eaten that much and feel like he is capable of so much more.  I spoke with the NP on the phone for a while and told her exactly what has been going on with Nate.  She said that it didn't seem likely that he had a blood infection, because he would be much more sick (at that point he was in the stroller munching on Cheetos and chatting with everyone).  They took the cultures anyways.  We discussed his weight gain, future appointments and blood work.  His hemoglobin had dropped and she thought a blood transfusion would be a good idea.  I said that I would rather my mom not have to sit around the clinic all day for him to get blood and I would bring him in on Thursday morning.  They sent Nate and my mom home with a container to try and get a stool culture to see if that could be the source of his "warm episodes".

Grandma said that she and Nate had a lovely day.  They drove around and chatted.  Went home and played, watched TV and napped.  He also ate a bunch with Grandma.  Far more then he has been eating in the past weeks.  They had flushed his lines at clinic, so I had my mom be on the look out for a fever.  She thought maybe he got a bit warm, but no fever.

Then at 4pm I got a call at work that his cultures had grew bacteria and we had to get him to the ER, now.  Apparently, his blood grew gram negative rods which is very serious.  Nate's transplant doctor today told me that she "respects gram negative rods".  Usually, kids get very, very sick with this infection.  They usually have hours, not days, before they can become septic and even die.  Yet, somehow it seems that Nate may have been fighting this infection for a week and a half.  Wow!  Crazy.  Super Nate to the rescue.

So, here we are.  Nate is actually doing quite well.  His spirits are high and his appetite is the best it has been.  He has been eating all day long.  I brought him a HUGE bag of all different kinds of foods.  At the suggestion of Grandma, I brought a muffin tin and Nate and I filled each muffin cup with a different snack.  Since he only wants to eat a couple bites of each thing, the muffin cups are perfect and he has been snacking out of them all day and has even eaten a bit of hospital food.  His new favorite food is fortune cookie.  He saw one on TV a couple nights ago and has been obsessed ever since.  He called me last night and asked me to bring him some, then told the nurse first thing this morning that Mommy was going to bring him a "whole box of fortune cookies".  Well, I found a bag of them at Albertson's after work yesterday and he ate TEN fortune cookies today!  The kid is going to turn in to a fortune cookie!

I met with the stem cell transplant doctor and nurse today while Maya entertained Nate (thanks Maya).  I found out that Nate was indeed randomized to two stem cell transplants.  Ugh.  Chris and I have to talk a bit more but we are pretty confident in our probable decision to drop out of the study and only put Nate through one transplant.  Nate's doctor mentioned that she has another family that really, really wanted their child to receive two transplants and was randomized to one.  Really, it makes me sick to my stomach that we can't switch with this family.  It just doesn't work that way...it has to be random.  I don't know their child's situation, but it breaks my heart that this family's mind could be put at ease and here we are stuck with two transplants and don't want it.  We have until Monday to give them our decision.

Nate's transplant will indeed need to be moved back a week.  There are some possible timing issues with this and I'm trying not to worry about them until I know there is something to worry about.  I am concerned that this set back (as well as the set backs we have had along the way) could put Nate's ability to get the antibody treatment at risk.  The antibody treatment has to be done a certain number of months from diagnosis and I don't know what that number is, or if we are getting close to that number.  I just know that Nate has had several timing set backs and it is making me nervous.  We should know some more information soon.

Right now, we are waiting for the bacteria that grew in the cultures to be identified.  Once they know what bacteria we are dealing with, they will know better how to treat it.  He may then be able to go home in the next couple days on antibiotics (probably IV).  Just waiting and seeing right now.  He is currently getting two broad spectrum antibiotics.  He spiked a fever last night, two hours after they flushed the antibiotics in to his lines, but has not had any fever since.  They drew more cultures today and last I heard, nothing had grown.  The other question we don't have answered yet is if they are going to put him in to surgery to replace his line.  Three teams of doctors are discussing and will decide.

I am trying to look at this blood infection as a blessing.  Maybe this was the answer to my prayers.  God does work in mysterious ways.  Nate has the extra week now that I so desperately wanted for him to work on building his body mass and strength.  This would normally be an infection that would make a child very, very sick...but Nate is not sick.  He is better than he has been in over a month.  Crazy that a serious blood infection could be the answer to our prayers, but you never know.  We are now praying that there will be no problems with a timeline and Nate receiving antibody treatment in the future, that we make the right decision about Nate receiving one transplant or two and of course that this blood infection is cleared up quickly and completely.

Unfortunately, now we will not be able to bring our little super hero to the benefit tomorrow night. Chris and I will be there for a bit, though, and we are really looking forward to it.

Plugging Along

We are ok...Nate is ok.  I wish we could say we are spectacular.  Nate is still skin and bones and still does not have enough energy to walk.  He had a clinic visit on Friday and Nate had gained another 0.3 kg (about 2/3 of a pound).  Yes, it is progress.  I just wish I could see it on his body.  The fact is that he is still 7 to 8 pounds under weight...and that is a lot.  He is eating...small amounts.  He asks for food constantly and then only eats a bite or two.  I literally spend my entire day, making food and going out to get food that he asks for, only to watch him take two bites and throw the rest away.  It seems like a never ending battle.  Then, we have made him throw up twice in the last two days, by giving him medicine.  Plus, the diarrhea continues...with a vengence.  Really, it's a battle.

Now, for the good news.  Nate's little personality is back.  He is still very, very tired, but when he has a bit of energy, he is acting like himself...except for the not wanting to walk and run around like crazy.  He wanted to see a movie in the theater (one of his favorite things to do), so we took the boys to seen Alvin and Chipmunks on Friday night.  Nate loved it, especially the exploding volcano at the end (rockets and volcanos are his favorite things right now)!

We learned on Friday at Nate's appointment that his platelets were starting to slowly creep up on their own, so he didn't need a transfusion.  If his numbers all recover completely, on their own, they are looking at starting the transplant process on January 23rd.  The first three days are injections in the clinic...then he will be admitted on the 26th and the chemo drugs will start on the 27th.  I don't know if it is a possibility, but we want to try and push it back a week, if at all possible.  A few people have asked, "What is the rush?", "Why can't they put off the transplant until his little body is stronger?".  The short answer is that his cancer treatment protocol requires that the transplant be done within so many weeks of the last round of chemo.  The protocols are based on research and the research says that you can not let his body have too much time to recover, because you may then be giving any hiding cancer cells a chance to grow.  We have an appointment on Thursday to discuss things a little more.

After Nates's clinic appointment, we went for his neuro psych (developmental evaluation) appointment.  Nate cooperated with the woman for about 10 minutes...then, was not going to give her the time of day.  We rescheduled for next Friday.  I hope he will be feeling a bit better, but if Nate doesn't want to cooperate...Nate will not cooperate (sick or not).  So, we will see.

We then went back to the clinic, so I could sign all the papers consenting to the transplant process.  Really, it's some pretty heavy stuff.  I can't tell you how much I hate signing those papers saying that they can torture my baby...but we have no choice.  We have to give Nate the best chance at life and this is the only way to do that.  Now that the papers are signed, Nate will be randomized to either one transplant or two (back to back mega dose chemo with stem cell rescue 6 weeks apart).  Nate is enrolled in a study to find out if two transplants is better than one...at this point the research is not definitive.  I am very, very nervous about finding out Nate's place in this study.  I am praying that he will be randomized to one transplant.  Chris and I feel that with Nate's presentation and his fragile state, that two transplants would just be too much.  If he is randomized to two, we will most likely pull out of the study and only have him receive one transplant.  The reason I am praying that he will be randomized to one is that it will make our decision for us (two transplants is experimental and can not be given unless randomized to that arm of this study).  I worry that if Nate is randomized to two transplants and we decide to pull him from the study to only receive one, and Nate's cancer ever relapsed, I would always wonder if we made the right decision.  I just don't like these awful decisions being placed on our shoulders.  Nate's oncologist poked his head in the room after I finished signing the papers and said that he knows I have probably heard of some other neuroblastoma kids not doing so well lately.  He wanted me to know that Nate's MIBG scan was EXTREMELY clear (sometimes there are questionable areas) and he feels like Nate has a few more percentage points in his favor.  While I don't like my son's life to be reduced to percentage points and we wholeheartedly BELIEVE that Nate has a 100% chance at life...it was still kind of nice to hear that (in a weird way) from a doctor.

We are getting very excited for Nate's benefit on Friday night...Super Date for Super Nate.  We are happy that the transplant process has not started yet and we will be able to attend.  We are hoping to even bring Nate for a little bit, so that everyone who may not have met him will have a chance to meet a real life super hero.  If you are interested in attending and have not got your tickets yet, please contact Donna Mobilia at dmobilia@aol.com.  There are still tickets available for the dinner and poker tournament.  There will also be a silent auction and raffle with lots of fun items.  There is more info available on the flyer and ticket form that is posted on the right side of the blog.  There are so many lovely people who have been working so hard on this for us, it is truly amazing.  We can't wait to see everyone there.  Thank you so much for your support.

Super Date for Super Nate

Some lovely friends and family are working hard putting together this fund raiser for Nate, to help us with medical bills, the expense of this trip to New York for surgery, and his further treatments.  It will be a dinner and poker tournament at Coach and Willie's in downtown Phoenix on January 20, 2012.  I know they are still looking for sponsors for the poker tables and items for the silent auction and raffle.  All the details can be found on the invite and ticket form links posted on the right side bar of this blog and you can contact emilyamead@yahoo.com if you need more information.  Please share with your friends.  Thank you for all your love and support!

Day 10

Our goofy boy is back!

Yes, Nate is still in the hospital.  I have not really felt like writing and there really hasn't been much to report.  Yesterday and today, he finally is starting to make some progress.  He had much more energy yesterday and was speaking much more clearly.  He still wasn't swallowing much and was still having a bunch of spit build up, but not as much as before.  I was able to talk him in to eating a couple bites of food and a few sips of water.  Not much, but 100% more than the previous 7 or 8 days.  Today was even better.  He kept saying "no" to any food I offered him, so I decided to try his favorite candy, PEZ.  Sure enough, he downed 3 packs of PEZ in no time flat.  Clearly, the sores in his throat are better, or he wouldn't be able to swallow PEZ.  He is still on TPN and I'm still convinced that he won't eat until they turn it off.  I talked them in to turning it off in the morning.  I also haven't had to push his morphine button all day yesterday or today, hopefully we can have them turn the drip off tomorrow.  Over the weekend, his ANC went from 0 to 100 and back to 0.  Argh!  Monday it was 47 and today 115.  We are praying and praying that it is above 250 tomorrow.  Even if his ANC does get to 250 tomorrow, we aren't sure if they will let him go home, but Chris and I are surely going to push for it.  We've all been tortured long enough.

Nate is feeling much better and has a ton of energy, which is hard because they won't let him leave the room.  Once he comes in to the hospital with a fever, he can't leave his room until he leaves the hospital...even though we have been there for 10 days and he has been fever free for over 6 days.  I've been coming up with lots of games to keep us occupied, but it's getting difficult.  He even missed meeting Larry Fitzgerald and some ASU football players because of his isolation.  Good thing he doesn't care that much about football yet...and no one in this house cares about ASU football. :)

Nate is supposed to start round 5 of chemo on Friday.  I talked with one oncologist who said he didn't think that Nate would be ready...but he didn't really have a lot of answers for me, so we're just waiting to see what Nate's body does.  The Dr. (who is not Nate's main oncologist, who makes the decisions) said we could wait until the following Friday.  That would be so, so great to have a week off...except...there's this little detail of a surgery in New York.  I know that everyone involved is used to these delays, but it really can't be delayed too much because it will start pushing Thanksgiving and the surgeon is not there...major problem.  So, Chris and I have decided we will push them to keep checking Nate and start chemo as soon as his little body will allow.  Not really what we want to do, but it's what must be done to secure this surgery.  All of our travel plans are up in the air and I can't even make any phone calls until we see that Nate's numbers have recovered and we can start round 5.  I'm taking deep breaths, but to say that this causes me anxiety is an understatement.

This has been rough, really rough.  It's just so awful to see him in pain and it really hit us like a ton of bricks how quickly he went from being totally awesome to totally awful...and he has been in the hospital SOOOO long.  The hardest part about this is that we didn't really get much of a break this round and we know we are not getting any kind of a break after the next round either.  We have to take him right from chemo to surgery, and that is so hard.  This weekend was pretty tough.  We had a really cute 1st birthday party for Ellie...but Nate was not there.  Our family was not together and it kills me.  I am really happy that we at least celebrated together on Ellie's actual birthday, the day before everything went downhill.  I also had a super emotional day on Saturday, partly due to the outpouring of love and support for Nate and our family.  My sweet friend, Jen, organized the most amazing car wash to raise money for Nate's care.  She told her boss at Walgreens about Nate and he immediately jumped in to action to help.  So many people I don't know worked their butts off organizing the event, washing cars, making hot dogs, collecting donations and doing so much more that we probably don't even know about.  I was not there because I was trying to get things together for Ellie's party after having been stuck in the hospital all week, and also because I really didn't think I could handle it emotionally.  I was already in tears all day from the outpouring of support I saw on Facebook.  The turn out was incredible and the amount raised far exceeded any of our hopes!  Thank you so much to everyone.  There is no way I could ever thank you enough or show you how much it truly means to us.  We promise to pay it forward one day soon.  Also that day, a friend from high school, Leigh Ann, came to drop off the cake she had offered to make for Ellie's birthday party.  I have always made the kid's birthday cakes and I had a hard time accepting the offer from Leigh Ann at first.  I am so glad I decided to give myself a break because there is no way I could have made a cake with Nate in the hospital for so long.  Leigh Ann made the most perfect, beautiful cake for my sweet girl's 1st birthday piggy party...and it was so delicious that our guests gobbled up the whole thing in no time flat. She also made the absolute cutest smash cake...and little pink pig cookies.  She went so totally above and beyond, I almost couldn't handle it.  The love and support from all around is just so much to emotionally handle sometimes.  We have thoughts of..."do we deserve this", "how are we ever going to live up to this", "how could we possibly thank all these people" and "we wish we were helping with these efforts, not having to ask for the help".  Not to mention that sometimes having your heart so full of the love around you, makes it feel like it will burst.  These are just two examples of the many, many, many ways people are helping us through this.  I want you to know that if I forget to thank you personally or through a note or on this blog, it does not mean that we are not eternally grateful.  I really don't actually have enough hours in the day to thank everyone...wow...isn't that incredible!

I'd like to clear some things up about this blog.  I know that I did indeed ruffle some feathers with my naughty language a few days ago.  When I said I was sorry if that word offended you...I meant it.  I really don't want to offend anyone...but this blog is really, my story.  I know that many of you come here to get updates about Nate and he is obviously the reason for all of this...but he can't write a blog and Daddy has no interest, so the task of updating everyone is left to me.  When I started this, I had no intention of letting everyone in to the mind and heart of a mother to a child with cancer...but here you are.  It's not a pretty place to be and there are many, many four letter words here...only because there is no word in the English language that accurately describes how I really feel about cancer.  Ultimately, this has become and outlet for me and I need it, but I want everyone to know that I am not as "bad off" as maybe I seem in my blog entries.  I spend ALL day being happy and positive for Nate, Wes and Ellie.  I am absolutely positive that Nate will beat this cancer.  I search for our blessings daily and usually they grab me before I have a chance to look.  I take each happy, free of cancer worries, moment that my family is given and I run with it and do something incredible and fun.  The reality is though...that this is not a positive experience.  Yes, I look for the positives in everything, but really I just want to be taking Nate and Ellie on play dates to the park and to be volunteering at Wesley's school.  Not, taking Ellie to the babysitter and Nate to the hospital and never able to even pick Wesley up from school. We are constantly making the best of it...but really it sucks.  Cancer is stealing this year from all of us and I'm not happy about that.  I need a place to scream and yell and kick...and this is my place.  When Nate throws a royal fit about having to take another medicine or get another shot...I want to throw myself on the ground and throw a royal fit too...but I don't.  I smile, encourage, use my happy voice and tell him that he's strong and brave and it will be over in a second.  Then I come home, get on the computer and throw my fit to you all.

Are You Aware?

 
September is over, which brings Childhood Cancer Awareness Month to a close.  Did you do something to spread awareness this month?  If not, you still have plenty of time...these children need our support year round, not just in September.  What does awareness mean anyways?  A fellow Neuroblastoma mom, that I met through Facebook, did a radio interview this month and was asked this question from a caller.  

"I'm trying to figure out how me personally being aware of any cancer helps anyone? My boss has cancer and I'm aware, but I'm not a doctor and don't have money to donate, so how much can just awareness do? A friend of mine's son had cancer and they replaced his leg with metal and he was 10. I'm aware of that also, but again, my awareness did nothing to help this child either. Isn't reaching out to people with money to donate more of a help than just being aware?"

At first, this made me mad, but really it's a very good question.  What good is awareness anyways?  What if you don't even have an extra $5 this month to donate?  There is still plenty you can do.  The point of spreading awareness, as I see it, is to teach people who have never been close to a child with cancer what it truly means for them and their family.  If you are really, truly aware and know what these children go through every day to fight for their lives, you  will do something...anything.  So, what can you do?  Here are some of my ideas.


1. Spread awareness.  Give these children a face and a voice.  Get the word out there.  Maybe you don't have any money to donate, but someone does.  The more you spread the word, the better the chance that the information will get to those that do have the money to contribute.


2. Volunteer your time.  There are so, so, so many ways and places to volunteer.  You may not have any extra money to donate to an organization that raises money for children with cancer, but do you have an extra hour a week?  How about an hour a month?  Whatever time you have will be valued.  These organizations rely on volunteers to make miracles happen.


3. Make a child smile or make the family's day easier.  Do you know a family with a sick child?  How about a friend of a friend of a friend?  Can you make a meal, run an errand, babysit their other children, do a load of laundry, sit at the hospital with the sick child so the parent can get a brief break?  So many people have done so many nice things for us, we surely would have gone crazy already without all the help.  If you are lucky enough to not be close to anyone with a sick child, then go to your local children's hospital and volunteer to get to know some children.  I guarantee spending an hour of your day on the oncology floor of a children's hospital, will change your life forever.


4. Use your talents.  Maybe you don't have any extra funds in your bank account to contribute, but you can be creative.  Have a garage sale, make something for a craft fair, hold a bake sale or a lemonade stand.  Use a little of your time and talents to raise some money for sick children.  I'm sure it will be time well spent.  Maybe you only raise $50.  It's still $50 more than the organization had before your efforts and lots of little things add up to big, big things.


5. Donate blood, platelets and sign up for the bone marrow registry.  I've donated blood before, because people need blood...right?  I never really gave a ton of thought to where this blood was going.  In the last three months, Nate has had 5 blood and 2 platelet transfusions.  Each round of chemo, knocks out the blood making system in his bone marrow.  He gets shots every day to help his white blood cells recover, but the only way to help his red blood cells and platelets, is to get transfusions. Donating blood has taken on a whole new meaning.  Please, take some time and donate.  I have also thought for years about signing up for the bone marrow registry.  My only hesitation was that if they needed my marrow, I would be put under anesthesia and it would hurt.  Really?!?  It would hurt?!?  What the heck was wrong with me?!?  These brave little souls fight every day to stay alive and I was afraid of a big needle?!?  Nate is lucky enough that he will be able to receive his own stem cells, but many more children (and adults) rely on donor marrow to LIVE.  Go sign up!  Maybe you'll be lucky enough to be chosen...it will hurt a little...but you will always know that you helped to save someone's life.


Those are my ideas.  If you have any more, feel free to leave them in the comments.  I am also going to work on a list of great children's cancer charities, in case someone does have some money they would like to donate.  So please, don't let September end...keep spreading the word...kids get cancer too.


P.S.
Nate's first day of round 4 has been smooth sailing.  He's fighting like the super hero he is and we pray that this will continue to be as easy on him as possible.

Overwhelmed

Playing with Playdough that a dear friend brought over for him. One of the few times he perked up while he was home.

So, today was a doozy.  It began with jumping out of bed at 6:30am to the sound of Nate starting to throw up.  I ran to his room in time to coach him through some gagging.  Chris was in the shower and comes in to Nate's room shortly after, hunched over in pain...soon, rolled up in a ball on the floor in pain.  I knew immediately that it was a kidney stone because he had one when I was pregnant with Ellie and I remember the pain he was in.  He apparently had been up for a couple hours trying to will the pain away and not mess up the plan we had for the day.  I quickly rallied our troops.  Papa took Chris to the ER, Lizzy came and picked up Ellie, Grandma came to take Wes to school, and Lou Lou came with me and Nate to the clinic.  Happy to report that Chris felt much better after they gave him morphine and by the time he got the xrays and CT done, the stone had finished it's painful decent in to the bladder.  He is doing fine.

Nate was pretty much the same as he has been, but seemed to perk up a bit when he got to see all his sweet friends (nurses) at the clinic.  They drew his blood...then the bad news started.  His platelets were low.  Ok, pretty much expected something like that.  His electrolytes were also dangerously messed up.  His sodium, potassium and phosphorous were extremely low.  If the sodium gets too messed up it can cause seizures, the potassium can cause heart problems.  He needed this to get fixed.  At first we thought they were going to put an NG tube in and send us home with a solution of electrolytes and some nutrition to put in the tube. The doctors had their morning meeting and decided that Nate needed to be admitted to the hospital.  The thing I was dreading.  I have mixed feelings.  On one had, I of course want Nate to be safe and have all the care he needs.  On the other hand, I hate the hospital.  I just want to be home and be a Mommy to all 3 of my sweet, sweet kids.  It kills me that I don't get to spend the time with them that I so desperately want to.

So, we hung out at the clinic all day and Nate got fluids and platelets.  Then we checked in to the hospital and they will watch him closely and make sure his electrolytes are correcting.  Now, why were his electrolytes so messed up?  We won't know completely until the kidney doctor sees him in the morning, but they think the chemo did some damage to his kidneys, on top of the fact that he was vomiting so much.  The damage should reverse itself, but he will have to take an electrolyte solution until it does...then round 5 he will get hit with the same nasty drug again.  He may still need to get an NG tube.  That will be decided over the next few days in the hospital, depending on how he does.  We are trying to avoid the tube, but will of course do what we have to do.  Once we checked in to the hospital he seemed to have perked up quite a bit and was interested in eating Cheetos, so I'll take that as a good sign.  Lou Lou is nice enough to stay with him tonight, so Chris and I can get a good night of sleep.  We haven't had one in almost 2 weeks and Chris especially didn't sleep last night.  Then, all the grandparents will take turns with Nate at the hospital tomorrow while Chris and I work.  He will be in the hospital for several days at least...they have to check him day to day to see how he is improving before they will know when he will come home.

Tonight, I left the hospital and went to a "fundraising meeting" that our friend, Jen, set up.  I wanted to try and make it to the meeting to answer any questions people had.  I walked up to that Starbucks and see all the sweet people gathered inside to discuss helping my little boy and my family.  I immediately started crying.  My day was fairly overwhelming, with all the stress we had been through, but that's not why I feel overwhelmed.  I feel overwhelmed with love and support.  Our day began with all of our family swooping in and scooping us up when we needed it most and ended with a beautiful group of family, friends and friends of friends all taking time out of their busy lives to help us.  So...many...people.  When Nate was first getting diagnosed, I dropped to my knees, sobbing, repeating over and over again, "I can't do this".  Well, I was right...I can't do this...alone.  To everyone in our family, to everyone at that meeting tonight, to everyone who takes the time to make us a meal, send a gift, write a note, or email, or blog or Facebook comment, to donate or help raise funds, who says a prayer, gives a hug, or tells Nate's story.  Really...every little bit of it means so much to us.  On days like today, when I feel like I got slapped in the face again by cancer, all the people around us remind me that I CAN DO THIS.  I can be strong for Nate, and get him through this.  Thank you.  I love you all more than you know.

This is what childhood cancer looks like...

I'm sorry if this picture is too sad for you to look at. Imagine how I feel...this is my child. Imagine how he feels. The treatment is doing this to him and we have no choice. This is his only shot at life. No baby should have to go through this...ever...and I'm mad. I'm mad because I didn't know, and neither does most of America. Here are the facts about childhood cancer.

•  Every school day 46 children are diagnosed with cancer.
• Sadly, over 2,300 children with cancer die each year.
• 1 in 330 children will have the disease by age 20.
• Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
• Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.
• 80% of children have metastasized cancer at the time of their diagnosis. At diagnosis, only 20% of adults with cancer show evidence that the disease has spread or metastasized.
• Detecting childhood cancers at an early stage, when the disease would react more favorably to treatment, is extremely difficult.
• Cancer symptoms in children – fever, swollen glands, anemia, bruises and infection – are often suspected to be, and at the early stages are treated as, other childhood illnesses.
• Even with insurance coverage, a family will have out-of pocket expenses of about $40,000 per year, not including travel.
• Treatment can continue for several years, depending on the type of cancer and the type of therapy given.
• There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
• The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
• The American Cancer Society spends less than 70 cents of each 100 dollars raised on childhood cancer.

What Causes Childhood Cancer?

• Every family is potentially at risk.
• In almost all cases, childhood cancers arise from non-inherited mutations (or changes) in the genes of growing cells.
• As these errors occur randomly and unpredictably, there is currently no effective way to predict or prevent them.
• Most adult cancers result from lifestyle factors such as smoking, diet, occupational hazards and exposure to other cancer causing agents.

Cancer Research Funding

• Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
• Pediatric AIDS receives 4x the funding that childhood cancer receives.
• In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.

Most drugs used for childhood cancer treatment are over 20 years old and were developed to treat adult cancers.

Cancer treatment can cause serious side effects that often last a lifetime.

These kids need effective, less toxic treatments. They need a cure. So, why is childhood cancer so grossly underfunded? Are the kids just too sad to think about? Do they not have a voice?

I used to see the St. Jude kids on the TV...or I heard stories of a friend of a friend who's child had cancer. I gave money here and there, but why didn't I do more? I didn't know...I didn't think it could happen to my child. Well it can, and it did. So please, do something without it slapping you in the face too. Use Nate's pain and the pain of every other child fighting with all their might, as your motivation. I know most of the people reading this are now aware...go out and make your friends aware too. Many of these children are too little to ask for help. They need our support and our dollars, so they can have a chance to grow up and live the life they were meant to live.

Nate is not doing well. Every time we think we're starting to turn a corner, we aren't. He's keeping water down, but not much else. As you can see, he's probably lost all the weight he worked so hard to put on...I'm too scared to weigh him. He barely has enough energy to lift his head or talk. We called the on call Dr this weekend and were assured that this is fairly normal. As long as he's keeping fluids down, he's doing ok. We have an appointment at the clinic in the morning. We'll see what they say when they see him. Chris and I are not doing well either. We're mentally and physically exhausted. I'm having some major stomach problems...maybe it's sympathy pains. Please pray for us. Please pray that Nate will start doing better soon, so we can have a bit of a break before they hit him with round 4. Please pray that Chris and I can continue to stay strong and positive. I think we are doing a pretty good job, especially around the kids, but it's not easy.

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.