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!