A Good Day

Today was a good day.  I woke up to Nate at the foot of our bed, hollering for food...music to my ears right now.  He apparently gave up while I was getting Ellie up, because when I returned to our room to find out what Nate wanted to eat...he was gone.  I found him coming out of the kitchen, eating cinnamon toast crunch.  Apparently, he decided I wasn't moving fast enough and he needed to take matters in to his own hands.

We had made plans to go to Liz's to play with Jack and Lucy.  I told Liz we would be over after 10am.  At 8am, Nate said he didn't want to watch any cartoons.  He wanted to go to Jack's house, right now.  I explained that I had to take a shower and get dressed first.  He told me he would wait in the car for me.  Haha!

By the time we got to Liz's, he was too tired to walk in by himself.  I carried him in and set him on the couch.  I went in to the kitchen to put his milk in the fridge and by the time I got back to the living room, he had hopped off the couch and was playing with Jack.  I even saw him attempt a little bit of a run.  He's basically like a baby deer, walking on his skinny little legs, but he's trying.  He climbed down into their "toy pit" on his own and even shot some basketball.  I pretty much had tears in my eyes all morning.

He would get tired every now and then, and say that he needed to take a "little rest".  I set him up with a blanket and pillow on the couch.  He would lay down for 15 minutes or so, then pop up and say his rest was over and he was ready to play again.  Oh, my sweet boy!

As you can see from the video, Liz taught Nate how to wink.  So cute!  He also got to take a spin around in Jack's electric jeep.  Ellie sat in the passenger seat, while her big brother took her for a little ride.  As weak as he is, it was truly an answer to my prayers to see Nate "run" and play a bit today.

Blessings

Thursday morning, Nate went in to surgery to have his line put back in.  He kept telling everyone that he pooped on his line and it had to be washed to get the bugs out.  He then talked about getting scissors and putting the clean line back in himself.  Yikes!  Most parents have to worry about their kid getting a hold of scissors and cutting their own hair...we have to worry about ours trying to insert his own central line!  He was such a card this hospital stay.  I think it was because he was feeling pretty good.  He's always funny (when he's feeling good), and he had all the doctors and nurses cracking up, all week.  The surgery was quick and easy.  He was a little nervous before, but the happy medicine (Versed) helped.  I told the anesthesiologist that I needed some too, unfortunately, he did not agree. When I went to see Nate in post-op he was sitting up (with his eyes closed), asking to get back to his room.  He was happy to have his line back...and boy, so am I.  I think I missed it more than he did.  Poor kid had to get stuck so many times during those 2 days without a line.  Thank God for the Broviac!  We had to sit around the hospital for a few more hours, so that he could get his afternoon dose of antibiotics.  On the way out, we swung around the other side of the floor to give Nate's favorite nurse "knuckles" before we left and we were told that there was a Diamondback in the play room.  Nate got to meet and get an autograph from Paul Goldschmidt.  He was pretty excited to meet a "real baseball player".

Home health came Thursday night to show us how to give Nate his IV antibiotics every 8 hours.  It's pretty amazing how easy they can make things, these days.  We don't need an IV pump, or anything.  The medication is in this contraption called an Eclipse (or "party ball").  We flush Nate's line, hook up the "party ball", unclip it, and it goes into his line over an hour via compression, then we flush his line again.  The only pain in the butt part is that it ends up being a 2 hour process because the medication is refrigerated, but needs to be taken out of the fridge an hour before we hook him up.

Home has been great for Nate.  I knew it was a good sign, when we got home and walked in the house...he saw one of his stuffed animals on the kitchen table and let go of my hand to walk and grab it.  Those were the first unassisted, unforced steps he had taken in a month and a half.  Later that night he actually got off the couch to do a floor puzzle with Linde.  He has been eating well and moving a little bit more every day.  This morning, Chris got out of the shower and was surprised to see that Nate had gotten out of bed and walked to the couch in the living room (carrying the "party ball" he was still attached to)...he hasn't gotten out of bed by himself in almost 2 months.

We've been basically doing anything that Nate wants to do, which means eating at all sorts of random places, chosen at the last minute.  Friday, Nate wanted to go to Costco for lunch and Chick-fil-a for dinner. We went to a friend's birthday party at the railroad park on Saturday and had friends over for dinner.  Sunday, Nate wanted to go to Dilly's for lunch and Chris and I went to dinner and a concert that night and left the kids with Grandma and Linde.  Nate wanted Chick-fil-a again and they remembered upon driving over there that they are closed on Sundays...he then decided on McDonalds.  Today, Linde took a half day off at work.  She works near the airport, so we headed down to meet some of Linde's work friends who have been very supportive.  Linde, then had the idea to go to Friday's Front Row at the ballpark and Nate thought it was pretty cool to watch the men cleaning the field after the monster truck rally they had over the weekend.  Tonight, he decided on Corleone's cheese steaks for dinner.  I know he still has Chuck E. Cheese's on his agenda, so we will fit that in somehow.  Wes asked tonight, why Nate always gets to pick what we are going to eat.  I explained that we need to get Nate whatever he wants for little while, until he gains more weight, and Wes was very understanding.  He has been such a great big brother to Nate.

Nate finally finished his neuro psych evaluation, after no less than 5 visits from the psycologist.  He really just wasn't in the mood to deal with her questions most days.  He started calling her the "pointing doctor" because she mostly went through these big books and asked him to point to different pictures.  After 5 days of testing, she came back with her final evaluation.  Nate is very, very smart.  Well, duh!  We could have told you that 5 days ago.  I have the full written report but basically it says "very advanced" and "very superior" all over it.  Nate's IQ came up as 135, and on the IQ assessment she administered, 128 and above is considered "very superior".  What can I say?  He's pretty special.

We have an official transplant date now.  The process will begin on 2/6.  He will be admitted on 2/9 and the chemo drugs will start on 2/10.  We have decided to drop out of the study and only put Nate through one transplant.  We truly feel this is the right decision for Nate and will never look back.  We just don't want to put his little body through any more of these drugs than he truly needs to beat this.  We really feel that one extra round of high dose chemo with stem cell rescue (stem cell transplant) will only do Nate more harm than good.  If Nate's disease had a different presentation, we would possibly be making a different decision, but we are making what we feel is the best decision for our son, in his own unique situation.

So now, we are trying to feed Nate as much as possible and build up his strength as much as possible in the next week, and also have as much fun as possible.  Nate has big ideas, and unfortunately no energy to go with it.  This is what Nate would like to do this week.  Play baseball, basketball and tennis; play goofy golf, go to Chuck E. Cheese, see a movie in the theater, and climb to the top of a tall mountain.  Right now, Nate can barely walk from one end of our house to the other before he tires out and needs a nap.  So, we hope to go to Chuck E. Cheese, see a movie, and maybe play goofy golf with the help of a stroller. This morning Nate told me that he isn't sick anymore and that he doesn't need to go to the hospital anymore.  I explained to him that he will have to go back to the hospital soon because there could be tiny cancers in his body that we can't see and he has to get more medicine to find those cancers and get them out.  He repeated this several times today, to different people.  He's just so smart and cute, we can hardly stand it.

I watch Nate struggling to move and it kills me.  Then, I count my blessings again.  The neuroblastoma world seems to have exploded with bad news over the last few weeks.  My heart aches for these families and children (some I have met, some I have not) who I have come to love.  With all that Nate has been through, he is smart and strong and he is beating this.  He may be completely beat down compared to what he was two months ago, but he is so far ahead of where he was, even a week ago.  Wes is thriving in Kindergarten (the picture above is him dressing up as a 100 year old for his 100th day of school party) and Ellie is just the happiest, sweetest baby ever.  Chris and I have been able to take some time for us, we are all home together right now, and I'm going to enjoy every single minute.

No More Bugs!

We're still here...waiting for negative cultures.  Every day they have taken cultures and every day they grow bacteria.  The first cultures that sent us to the ER grew out of both lumens (his central line has two tubes...or lumens)...both gram negative rods.  They identified the bacteria as e. coli, which wasn't surprising at all.  Nate has been having such bad diarrhea for almost a month that caused him to poop all over himself, literally from head to toe...no, I'm not kidding...at least once a day, sometimes more.  His lines got pooped on, over and over again.  We cleaned them of course...we cleaned them well, but apparently not well enough.

They have Nate on antibiotics and every day they take cultures.  Every day, they have been growing...but only in one lumen now.  So, it is pretty obvious that the infection in his blood is being treated well, but there are still bacteria stuck in his line.  Many times they are able to knock out the bacteria stuck in the line by running the antibiotics through the line, but sometimes the bacteria form a thick "biofilm" on the plastic of the line and hang on tight.  It seems that these bugs are hanging on tight.  So, after five days of positive cultures, they decided to pull his line today.

They placed a temporary IV in his arm, which took three tries...poor baby.  Then, this morning Nate went in to surgery to have his line removed.  We've told Nate from the beginning of this hospital admission, that he had to go to the hospital because he had little bugs in his line that could make him sick and the doctors had to give him medicine to get rid of them.  Chris told Nate last night that they had to take his line out and clean all the bugs out, then put it back in a few days.  Chris said Nate was pretty upset about the thought of his line coming out.

This morning he woke up asking for food and couldn't have any because of the anesthesia.  He was upset but I was able to distract him until transport came to get him.  He then started to get upset about having to go downstairs to have his line removed.  I think it was a combination of the thought of this thing that has been a large part of him for the last 6 months being removed...and leaving the comfort of his hospital room (he always gets a little nervous when transport comes to take him somewhere for some test).  He was a little mad at me in pre-surgery, telling me he didn't want his line out and he wanted me to go home.  The anesthesiologist gave him some happy medicine, he started smiling and was wheeled away.  The procedure took about a half an hour and as the volunteer was walking me back to see him, I could hear him screaming.  He was P-I-S-S-E-D that his line was gone, and it was all...my...fault.  He wanted me to go away and for Daddy to come.  He didn't want his nuk, he didn't even want poor Softie...he didn't want "ANYTHING!".  The nurse gave him a tiny bit of dilaudid and we went back to his room.  He was much happier settled back in his familiar room.

Then he began to eat.  He ate a breakfast bar, 12oz of milk, popcorn, drinkable yogurt, a bite of cheese, some fruit loops, some little sprinkle cookies, a fortune cookie, part of a banana, half a bag of chips, some bites out of his muffin snack tray and an entire PB and J sandwich...over about 2 hours.  He's been eating so great since we've been here.  It's a bit of a challenge because he doesn't like the hospital food, so we are keeping a steady stream of outside food coming in, but it seems to be working.  He is up about another 0.5 kg from being weighed at clinic on Wednesday.  Some of that is probably fluid weight that you gain when being on IV fluids in the hospital.  He is also weighing in a diaper and hospital gown, as compared to jeans and a sweater at clinic, so I'm hoping it evens out.  He is up to 14.1kg.  His ideal weight is 17kg but he has never been above 16.5kg.  His lowest, earlier this month, was 12.7kg.  If we can get him near 15.5kg before transplant, I will be over the moon!

Right now, his line is out.  They took it out this morning, gave him a few more doses of antibiotics and drew cultures out of his hand 6 hours later.  Really, there is no reason these cultures should grow anything.  Assuming they stay negative (which they should) for 48 hours, Nate will go back in to surgery on Thursday to have a new line placed (he thinks he is getting the same one back...after it goes through the dishwasher).  He can then come home.  Hooray!!  He will come home on IV antibiotics that Chris and I will be able to give him.  I'm kind of happy that the antibiotics will be IV, because the poor kid is already taking 17 doses of oral medication a day (not counting his Flintstone vitamin and the Culturelle I put in his milk)...and he hates every drop of it.  He is a very good boy about taking his medication though, he kicks and screams for a second, then takes it like a champ.  I think I'd kick and scream a bit if I had to take 17 yucky medicines a day too.

What's that?  You wanted to know about Nate's poop?  I knew you did!  Nate has had three...count them three...solid bowel movements over the past few days.  Remember that head to toe diarrhea at least once a day for a month I was talking about earlier?  Chris and I have never been so happy to see a solid poop in our lives.

I have Nate up and walking the halls several times a day and the whole floor knows when this is, because he screams at the top of his lungs the entire way.  It also tires him out pretty quickly, but I am determined to get this boy as strong as possible before transplant.  He really wants to go to Chuck E. Cheese (because the Peter Piper Pizza that is right by our house that he has been asking to go to...closed), and I promised him that we will take him before transplant admission.  A little NED celebration...but it's not going to be much fun if he won't walk.  So, we will just keep walking...screaming and all.

I found out that we have no worries when it comes to the timeline for antibodies.  So, that is a huge weight lifted.  I was not succeeding at the "don't worry until there is something to worry about", and was quite literally losing sleep over it.  As of right now, we still don't know when his transplant will start.  The earliest will be next week, with admission a week from Thursday, though it could be pushed back another week.  Infectious disease and transplant are discussing and deciding.  It is a balancing act between starting transplant ASAP and not giving any hidden cancer cells a chance to grow, and making sure Nate's infection is completely gone.  The biggest risk to transplant patients is infection, so we need to make certain that he enters the process, infection free.

Overall, Nate is doing pretty good.  I just can't wait to get him home, so we can be home for almost a week before transplant.  He's eating and pooping and walking (sort of).  He's getting stronger and stronger every day.

I want to ask for some prayers for a little friend of ours.  A couple weeks ago, we met a little boy named Jake at clinic.  Jake has been battling Neuroblastoma for 6 years, from the age of 2.  Jake does not have a Facebook page, blog, or Caringbridge site.  His family has been quietly and privately fighting this war for years.  Jake's battle is coming to an end.  He has been in the hospital since we met him and his family has been getting one piece of bad news after another.  They have been told that there is nothing more that can be done for Jake.  Anything more would cause more harm than good.  On the outside, Jake looks great.  On the inside, Neuroblastoma is quickly taking over his body.  The doctors have been preparing his family for what will take place over the next couple weeks or months.  Jake's mom says that sometimes he says he wants to fight and sometimes he says he is done fighting.  Unfortunately, the disease is now making this decision for him.  Please pray for Jake and his family.  This is not something that a little boy and his family should ever have to go through...it's just too much.

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.

Dear Jennifer

I have avoided thanking too many people individually on this blog, because so many people have helped us in so many ways, big and small, it would literally be impossible to properly thank everyone.  I am afraid of leaving anyone out and hurting feelings.  So, first I want to say that every single thing you have done for us (you all know who you are) means so much.  We are forever grateful for everyone's love and generosity.  You all are truly pulling us through this.

There is one person, though, that I have been meaning to thank.  She knows how I feel, but I really want the world to know what a wonderful person she is.

Dear Jen,

We have been friends for 15 years.  We have been there for each other through thick and thin...fat and skinny.  We have gone through the crazy nights and stressful days of pharmacy school (boy, we thought we had it so hard then), we have traveled many places together, we stood at each other's weddings, and rocked each other's babies, we've been there through divorce, infertility, family problems and life's every day stresses.  We've laughed until we cried and cried until we laughed.  It is truly special to have a friendship like ours.  Though, I never knew how special until my son was diagnosed with cancer.

You have truly been there for me and my family in a way I could have never asked of anyone.  From the first day's of Nate's diagnosis, you called, sent texts, visited and brought meals.  You planned two amazing fund raisers for Nate.  You check in with me almost daily, to check on Nate and always know when we might be having a hard day or a great day.  You bring us lunch and friendship to the clinic when we are stuck there all day.  You come to visit us at the hospital.  You picked all of the marshmallows out of a box of Lucky Charms and brought Harkin's popcorn to the hospital for Nate!  You have gone above and beyond for us in too many ways to ever count.

You left your husband, three children and full time job, to come to New York and take care of me and Nate.  You really didn't give me a choice but to accept your offer.  You said, "I'm coming, just tell me when".  Plans changed, then changed again (at the very last minute), as they often do in this cancer world.  You didn't flinch.  You said, "Ok, now when do you need me".

I was thrust in to this world of childhood cancer, with no choice but to be strong.  You have chosen to throw yourself so completely in to our world now, mind, body and soul...you are truly strong.  This is not a fun place to be...a lot of days it is a very sad place.  This doesn't faze you.  You have read and learned about Nate's disease.  You follow and care about the other children out there fighting, just like Nate.  You are truly the only person I know I can unload all my worries, fears and sadness on (especially when I can't burden Chris or my mom).  You always listen, understand, encourage and never judge me.  You cry, scream, cuss and laugh with me.

I know it is not easy or fun to be my friend right now.  I will never be able to thank you for choosing to walk this path with me.

I love you forever,

Beth



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.

Losses and Gains

I haven't taken any pictures in the last couple of days.  So, I thought I'd share an oldie, but a goodie.  This is my sweet, little 5 month old Nater Tot.  This is still his favorite lounging position and we know he is feeling ok, when he lays back with his arms behind his head.  Man, I love this kid!

We had Nate's appointment with the audiologist on Tuesday and our fear was confirmed.  The chemotherapy that Nate has recieved has permanently damaged his hearing.  Nate has significant high frequency hearing loss.  Some high frequency sounds are, "s", "th" and "p".  Left untreated, this will absolutely affect his speech and learning.  The doctor said that he will probably be a good candidate for hearing aides.  This will all be addressed when Nate has completed more of his treatment and is a little more stable.  Right now, he said we could help him by keeping background noise to a minimum.  Turn off the TV and music, if we are not directly watching TV or listening to music.  No background noise for background noise sake...it makes it hard for Nate to hear.

We knew this would probably happen, but I am finding myself far more sad about it then I thought I would be.  A small hearing loss, seems like a small price to pay for Nate's life, but I don't want my son to have to pay any price for his life.  The doctor, who was a very nice man, seemed so sad to give me this news.  I was instantly taken back to watching my babies have their hearing tests when they were first born.  They would take my brand new, tiny baby and strap a big black contraption to their head.  I held my breath as I waited for the results...your baby can hear.  I just want nothing but the best for my kids.  I don't want Nate to have to deal with hearing aides the rest of his life...but now, it is his reality.  God help the first child who makes fun of Nate for wearing hearing aides.  They will get the wrath of his mother!  Oh yes...I WILL be that mom if I have too.

I close my eyes and picture Nate as a big, tall man.  The only evidence of the war he is waging right now...the scars on his chest and the hearing aides in his ears.  I try to think of the hearing aides as a blessing that he will be able to use them to talk to people about childhood cancer and how he had to fight for his life at 2 years old.  Cancer has already taken so much from us...but we have gained awareness and perspective like I never knew was possible.

There is not much time to mourn the loss of Nate's hearing.  I let myself cry about it yesterday...then, put it away.  We have to get back to fattening this boy up for transplant.  Nate went to Tracy's house today while I worked and he nibbled all day long...and kept it down!  Really, I think he ate more today then he has eaten all month.  It seems that maybe the new combination of drugs is working.  I pray that his eating grows exponentially from here and we can see some real weight gain on this kid!

Take That Cancer!

Here we are, sporting our Super Mommy and Super Daddy capes that were made for us by a very, very sweet lady.  Nate loved to see Mommy and Daddy, zooming around the room in our capes.  Thank you Mary and Aunt Lizzy.

We can mark today down as a victory for the Super Dinoffrias!  Super Nate, our sweet baby boy, is officially NED!!!  We got all the results from his scans and bone marrow biopsy back today, and there is no evidence of neuroblastoma in his body.  Praise God!

Nate also gained 1 pound over the weekend and everyone was really impressed with his progress, so they did not put the NJ tube in.  I am still nervous about Nate's ability to gain enough weight in the coming weeks, but I am happy that he didn't have to get the tube placed today.  We will keep a close eye on his eating and weight gain and hopefully he can be the Super boy that he is and gain this weight all on his own.  His echo cardiogram and EKG also came back normal.  I had a nice visit with Nate's main oncologist, who we haven't seen in a few weeks, and got a lot of questions answered.  Apparently, Nate's vomiting, which appears to be due to delayed gastric emptying is completely normal after the surgery he had.  They had to remove a "significant amount" of his liver, which is right near his duodenum and his problems are all expected.  We are going to try a medication to help speed his GI tract along.  It may or may not work, but we're going to give it a try.  We also talked about some scary side effects of stem cell transplant that I've been worried about and my mind was put at ease, the best it could be.  We will be having some big meetings with the actual transplant team in the coming weeks.  I also spoke with Nate's doctor about an alternative form of radiation that we will be researching a bit more.

All in all, it was a good day at the clinic.  Nate's platelets were a bit low, but not enough for a transfusion.  So, we have to be wary of a nose bleed in the next couple days and return for a count check, and possible platelets on Friday.  Nate has an audiology appointment tomorrow morning to see if he has experienced hearing loss and to what extent.  The reality is that most kids that receive the type of chemo that Nate got, do experience hearing loss.  So, I am expecting this.  I pray that if there is loss, it is not too significant...but if it is, we will teach Nate to wear the hearing aides proudly as a badge of honor in the war against cancer.  Thursday, Nate has to be at the hospital all day again, for a kidney function test.  Then Friday, back to PCH for a neuro psych evaluation.  Basically, to see where Nate falls developmentally.  We just can't get away from that place.

Nate did ok with his eating today.  Not a ton, but more than the days before and he has kept everything down.  He is also getting more and more perky each day.  It is apparent that he is totally exhausted, but he is just more "Nate".  Talking constantly and saying the cutest, funniest things.  Also, being a little stinker...which I truly love, no matter how much it makes me want to pull out my hair.  He still does not want to walk, at all, and cries when I make him do it, but he is sitting up a bit more now.  It's just baby steps right now, that are super frustrating because we are on a time crunch with the transplant looming, but he will get there.  Stronger and stronger every day.  Thank you to everyone for your kind words and prayers.  I read all of the comments and messages, and they mean so much to us.  A special thank you to Nate's special friend Nadia, who is in her own battle with leukemia, and her mom, Jeanie  They searched all over the hospital today and tracked us down to bring Nate a special book.  Nate loved the book and immediately identified with the characters in it.  I had a hard time getting through it the first time without crying.  Then, I read it again to both boys tonight.  It really meant a lot to all of us.

6 Months

Yesterday marks 6 months since Nate ran in to the ottoman.  A little over 6 months ago, I would have told you that there is no way we would have survived what we have been through...but we are here...barely, some days...but still here.  This last month has definitely been the most difficult time in any of our lives.  I wish we could say that we have now come through the worst of it.  Unfortunately, we know that the worst is still to come.  At this point, I really do question how we are all going to make it through, but I know that God has brought us this far and will see us through to the end.

Nate's little body has had too much.  I can't even describe to you how skinny he is.  His bottom has literally disappeared and his bones are sticking out everywhere.  He looks like a skeleton...he is starving.  We have tried everything we can up to this point and have a new plan starting tomorrow.

Nate came home from the hospital on New Year's Eve with a tube down his nose, and sadness in his heart.  We had Nate's Christmas on New Year's Day night (Christmas Eve) and the next morning (Christmas morning).  Nate's Christmas Eve at Grandma's was decent.  He was excited about all the presents and even sat up on his own for a bit to open a few.  He even enjoyed driving over to Grandma's and looking at all the Christmas lights along the way.  Chris and I got everything ready for Santa's arrival that night just as we did the week earlier for Wes and Ellie.  There was no jumping out of bed to see the wonder of the gifts under the tree.  No running in to our room to wake us up.  We carried a crying Nate to the living room and tried to get him excited about the presents.  He just wanted to sleep.  He sat and cried and said that he was a "bad boy" and a "naughty boy" and that none of the presents were his.  My sweet, special 3 year old boy, who has never done a bad thing in his life, is depressed.  It is hard to get in to the mind of a 3 year old, but I think he thinks he is sick because he was bad.  When Nate was first diagnosed, I spoke with another family who's daughter is older than Nate and they said that she had these feelings.  At the time, Nate was little enough that he really didn't over think things and just went with the flow.  He is 6 months older now, and has 6 months of torture under his belt...I think he's starting to wonder why.  So this is how Nate's Christmas morning went.  Oh how I wish I could say it was different.  The fact is that this Christmas was the first Christmas that Nate "got it", and it was completely stolen from him by cancer.

The whole weekend, Chris and I were fighting with Nate's feeding tube.  He was throwing up every single feed we gave him.  We tried everything, a constant drip, slowing the rate, speeding up the rate, giving boluses, giving smaller boluses.  No matter what we did, once a full can got in his belly, no matter how fast or slow we put it in, he threw it up.  Nate also would barely talk and wouldn't swallow anything with this tube in.  He was asking for all kinds of different food and desperately wanted to eat, but was too afraid to swallow, so he would chew the food and spit it out.  It was awful to watch, it was making him so sad.  By the time we went to clinic on Wednesday, I demanded they take the tube out and give him a couple days to eat.  They were not happy with me and we discussed many options.  Basically the only other option for him, for many reasons, is an NJ tube, which goes through the nose and down the throat but in to the intestine.  They are thinking this will be good for him because we won't have to worry about him throwing up the formula.  I asked for them to give Nate a few days without the tube, so that he could remember how to eat.  At this point, he hadn't eaten more than a couple bites since November.

They agreed to give him the weekend, as long as he was eating and drinking.  The second that tube came out, he said "Mommy, the tube is gone.  I can talk and eat dinner now".  Oh, my poor baby boy.  The first couple days he had it out, he ate SO, SO much it was incredible...then he threw it up.  I don't think his little belly that hadn't eaten in so long was ready for the volume of food he ate.  The last couple days, he hasn't eaten much...but he has kept it down.  He is still also fighting bad diarrhea from the c. diff.  He just can't catch a break.  Just as I was typing this now, Nate threw up in his bed again.  Fuck!  When will this end?!  He desperately needs nutrition to be strong enough to have his stem cell transplant.  The transplant is the ultimate hell and will put his body through so much torture it is unreal.  He needs to be as strong as possible, and at this point he is as weak as he could possibly be.  The transplant is scheduled less than 2 weeks from today and can't be put off much...if any.

The only good thing that has happened in the last few days, is that glimpses of Nate's personality have been peeking out, here and there.  He has very little energy and can barely hold his head up, let alone sit unassisted or walk, but every once in a while Nater tot will poke out and those moments have brought me to my knees in gratitude.  I miss my little boy so much.

Tomorrow, they will place the NJ tube.  I am praying so hard that this is the miracle answer we have been looking for.  I am also praying that Nate will continue to swallow food and talk to us, even with the tube in, and that he will not get depressed by it again.  I had a talk with him tonight about the tube and told him that it was a new kind of tube that he could eat and talk with and that it was going to make him strong again, so that he can run and play and not be "wobbly".  He said it was ok, that they were going to put the tube in...I hope he still feels this way tomorrow.  I just want to see him run and play for a couple days before they knock him down again with this transplant.  I want to see his butt again.

We've all just had too much.  Chris and I don't sleep and are stressed beyond belief.  I cry myself to sleep every night and wake up crying every morning.  It's the only way I can get the emotions out without spending the entire day crying.  Wes has widespread stress induced eczema that showed up shortly after Nate was diagnosed and we are just now getting around to treating.  The other day, Wes said to me, "Mommy, did you know that sometimes kids get cancer and they die?".  Why does my 5 year old have to worry about his brother dieing?  We have, and continue to talk through all aspects of Nate's disease with Wes, but I don't want either of my boy's to have these kind of stresses.  This is why I cry.  The only one seemingly unscathed is our sweet Ellie Belle.  She toddles around like she owns the place, singing, dancing and clapping to "We Will Rock You".  The only sign she shows of our family stress is a double chin and super chunky thighs because all of Grandmas, aunties and adopted aunties are taking such good care of her and letting her eat...anything...she...wants.

I know everyone wants to hear about the results of Nate's scans.  We don't have them yet.  Nate's doctor doesn't like calling us with results.  In the past, I have pushed but didn't bother this time.  I really am not nervous about the results and we really can't give him his official NED status until we get the bone marrow results back, which can take up to a week.  Really, I've had too much on my plate just trying to get Nate some nourishment to even think about scan results.  We should at least hear about the MIBG tomorrow, and I will update everyone.  I'm sorry this isn't a more uplifting post.  We are keeping the mood in our home as light and fun as possible, but our reality is anything but right now.

Scan Tomorrow

I'm sorry I haven't written in awhile.  I'm sure everyone wants to know how Nate has been since he's been home from the hospital.  I will try and write in more detail tomorrow, but the short answer is...not good.  I haven't had the energy to write.  Hovering over Nate is literally a 24 hour a day job.  The tube feeds have not been going well...at all.  I'll explain more later, and I don't want to jinx it...but, Nate ate A LOT tonight and is so far keeping it down.  We are praying and praying that it will stay down.

Nate will be put under anesthesia tomorrow morning at 7:30am for a bone marrow biopsy and MIBG (neuroblastoma specific) scan.  I hate putting him under, but I know he always does well.  Normally, scanxiety would be taking over right about now, but honestly I am kind of excited for these tests.  This is officially the "re-staging" of his disease before he goes to transplant.  We BELIEVE we will hear nothing but the most wonderful three letters in the world...NED (no evidence of disease).

Please continue to pray for Nate's eating and weight gain, as he has very far to go before transplant in a couple weeks.  Please pray that the procedures go smoothly tomorrow and that we hear the news of NED, as soon as possible.  Thank you for all your thoughts, prayers and support.