1st Day of Radiation

We had an absolutely wonderful Easter on Sunday.  I'll post some pictures when I get a minute to get them out of my camera.  Sunday night, Nate and I headed to the airport to catch our 8pm flight to Houston.  With the time difference, we got in at 12:30am, but Nate didn't sleep a wink on the plane.  Some kind gentlemen helped me get all of our stuff from baggage claim to the rental car shuttles and Nate promptly fell asleep in the stroller while I was signing the rental agreement.  By the time we picked up the car and got to Stephanie's, I didn't lay down until after 2am.  Radiation is bright and early at 7am, so I got up at 5am to make sure I knew where we were going and we wouldn't be late.  Everything is a well oiled machine at the proton center.  We check in, go down stairs and see the nurse for vitals, then Nate gets to play in the play room until they come get him for his treatment.  Softie got his radiation treatment first...administered by Dr. Nater.  We headed back to the proton machine which Nate calls "the Star Wars machine" (he calls all scan machines "Star Wars machines" too).  The machine is pretty intimidating...much, much larger than a CT scanner.  When he saw the machine, he said, "No!  I want the smaller Star Wars machine.", referring to the CT scanner.  The child life specialist was there to help me distract him, though, and he quickly forgot about his fear.



I sat on the end of the long table with him in my lap.  They hooked up his line to an IV pump and let Nate push the buttons to start his anesthesia.  The white medicine makes it up the tubes and through his line...he half screamed, then got completely limp in my arms.  The nurses and technicians helped me do the "proton dance" as I carried his limp body to the positioner at the other end of the table.  Softie and I gave him a quick kiss and went to wait in the waiting room.  I managed to only shed a few, silent tears.  The actual radiation treatment probably took about a half an hour.  They gave me a pager, like at a restaurant, that goes off when I can go back to recovery to see him.  For some reason, my pager didn't go off this morning and they came out looking for me.  When I got back to him, he was P-I-S-S-E-D.  I don't know if he would have been better if I got there a little earlier.  We will see how tomorrow goes.  He just didn't want anything.  He cried for Stephanie (who was at work), he cried for Stephanie's car, he wanted to go home (to Phoenix), he was just mad.  He fell asleep in the car on the way back to Steph's and after a little bit, it was like a switch turned on and he was happy and wanted an ice cream sandwich.  He's doing awesome!  No side effects, that I can tell, at all yet.  He ate well all day and was full of energy.  He was running around, tiring me out and being a total stinker.  I couldn't ask for anything more.  He is such a loving, sweet, funny boy.  I'm taking this time to soak up everything that is 3 year old Nate.  I pray that he continues to do so well, through this treatment.  One down, eleven to go.

While I am enjoying every, single moment with my sweet boy...my heart is heavy.  There are so many children and families suffering right now in our cancer and specifically, Neuroblastoma, community.  I don't know what is going on, but every time I turn around there is another child that is relapsed, progressing or suffering complications of treatment.  Neuroblastoma is a nasty, nasty disease.  Please take a moment and say a prayer for all the warriors and their families who are suffering so badly right now.  Brennan, Jake, Ila Jean, Emily, Ethan, Brooke, Codey, Jack and countless others that I don't even know about.  Please pray for all the children that are fighting through treatment and are doing so well (like Nate).    I pray for miracles.  I pray for peace and comfort for the children and their families.  I pray that those who are doing so well, will continue, and will beat this nasty disease forever.  Amen.

Day +4, +5, and +6

I accidentally left my laptop at home and can't upload the pictures I've taken over the last few days with my camera, I only had this picture on my phone. I know it looks pathetic, but it pretty much sums up how Nate is feeling...like poop. He actually is trying to smile for Daddy in this picture. His mouth just hurts too much to smile well and his fever is too high to open his eyes much. My poor punkin'.

The last three days have brought a constant fever that does not fear Tylenol. His temperature has ranged from 101 degrees to 105 degrees almost constantly since Sunday night. Tylenol helps to bring it down a bit, but never really breaks it. The fever (and pain) causes his heart to constantly race. The lowest we have seen his heart rate in the last few days is in the 160's (normal is 70 to 110), but he is frequently running heart rates in the 180 to 190 range and even over 200. This makes him feel pretty yucky and exhausted.

The mucositis has gotten pretty bad. His mouth is sore, his saliva is thick and he has a little skin breakdown on his bottom. A scan today showed that his esophagus is pretty swollen and damaged from the sores. They are increasing the medication he is getting to help protect and heal his stomach and esophagus. His damaged esophagus could be a problem when it comes time to start eating again but we'll cross that bridge when we come to it. He is still sucking his pacifier (or at least holding it in his mouth) but he has stopped wanting to drink because putting anything in his mouth makes him throw up thick spit and blood.

All of his cultures are still negative, but he is on 4 antibiotics, an antifungal and an antiviral just to make sure they aren't missing any hiding bugs. The scan today showed a possible area of infection in his lung (the antibiotics will help with that) or it could be from inactivity (we are trying to get him up and blowing bubbles to help strengthen his lung). The scan also showed congested sinuses. They don't really think any of these things are the cause for the fevers (it is probably just due to his low counts), but everything is being covered by the antibiotics. As soon as he is fever free for 24 hours, they will start peeling away antibiotics.

Nate is on constant anti nausea medication, every 2 hours (two of which cause sleepiness), but I doubt the throwing up he is doing is really from nausea. His saliva is thick and gross, I think it sits in his stomach or esophagus for awhile and then just needs to come out. The throwing up is my least favorite part of this (I think it's Nate's too) because it is truly painful for him and I don't like seeing the blood that comes up with it. They are keeping his platelet levels fairly high because of the bleeding and damage in his esophagus, so he is getting platelet transfusions every day. On a side note...they had trouble getting his platelets the other day because the blood bank was out. So, go donate your platelets if you can, there are kids (and adults) waiting for them. He has also had a couple blood transfusions.

Nate has a morphine pump with a constant drip and a button to push if he needs a boost. He has done so well and doesn't seem to be in much pain, except for the throwing up. We really haven't had to push his button much. He is SUCH a tough cookie! Most people I know whine more when they have a cold than Nate has through this whole process. He's mostly been sleeping off and on, waking up every once in awhile to say something cute. I think I have to be careful or one of the doctors or nurses might just take him home, they love him so much.

This all probably sounds pretty bad...and it is...it sucks watching your baby go through this. We are all doing ok though. This is all to be expected and really is going much smoother than we really expected. Really, it could be much, much worse and more complicated. We are very happy and grateful that Nate's transplant process is pretty "text book" at this point.

Nate had a pretty good day. His blood work showed 6 white blood cells this morning. It's not much, but it means that those little cells are starting to do something. Come on super cells, GROW! The doctor thinks that Nate will start feeling better around Sunday. After hearing about Nate's lung today I decided we needed to get him up a bit. I hated to do it because I would just want to sleep too, if I felt like he does...but it had to be done. I had him sitting up and blowing and popping bubbles. We played some games, read some books with his Tag Jr. pen and painted a rock. Then the physical therapist came in and we actually had him walking around the room, bending and climbing...without any whining and crying. Such a strong boy!

I had kind of a rough day. Last night I found out that a little boy named Ben, who we see around the clinic and the hospital, passed away after fighting a very rare cancer for several years. Then, I woke this morning to the news that RJ also lost his fight last night. These were the first babies that I "knew" who have passed away since Nate was diagnosed. It hit me pretty hard. It's just too much. I haven't even written anything to RJ's parents yet. I don't know what to say. I'm sorry just doesn't cut it. I know there are no words that will comfort them right now. I pray that God gives Ben and RJ's family a peace that surpasses all understanding.

Day +1, +2 and +3

I headed home for the weekend with Wes and Ellie again, and Daddy took great care of Nater.  Nate got his first fever on Friday night and they were able to break it with Tylenol.  Then began the familiar cycle of fevers and now mouth sores.  So far all cultures are negative, which is a good thing, but they will continue antibiotics and daily cultures until his fevers stop.

I had a great weekend at home with the kids.  I had a few very sweet helpers (thank you ladies!) come over on Saturday morning to help kick off "Operation: prepare the house for Nate's homecoming".  Our house has become hopelessly cluttered over the last 7 months as my cycle of clearing out kid's clothes and toys has come to a complete hault and we seem to be acquiring more and more stuff.  I have been home so little and when we are, I either spend my day by Nate's side (when he's not doing well) or we are off seizing the day (when he IS doing well).  Now, I've always lived by the old poem, "The cleaning and scrubbing can wait till tomorrow
But children grow up as I’ve learned to my sorrow.
So quiet down cobwebs; Dust go to sleep!  I’m rocking my baby and babies don’t keep.",

but our house needs to be as clean as possible for Nate's homecoming.  So, we got to work.  We got a good start on Saturday and I continued to work in to the night after everyone left.  Wes and I tackled his room on Sunday morning and by the middle of the day, we had gotten a lot done but it looked like our living room and hallway had exploded and there were still pieces of toys scattered everywhere.  Then Chris mentioned that Lou Lou offered to stay the night at the hospital with Nate.  I was really missing him by then, but knew that this would give Chris and I some time to complete the work I had started.  Plus, we would actually get to spend some time together and sleep in the same bed!  We still have much decluttering to do, but I feel like I can breathe a little easier knowing that we got through the kid's rooms and craft area and through all of their toys and clothes!

Today, I had lunch with Wes and Ellie then headed to the hospital.  Lou Lou had taken great care of Nate, as always.  He's feeling pretty yucky right now.  He has had a fever all day long that decreases, but won't really break, despite fluid and Tylenol.  His heart rate has been running super high all day because of it.  He got some blood and his heart rate decreased a bit, but is still running high.  He is having some mouth pain and is starting to throw up mucous.  He was started on a pain pump today.  I'm hoping that the mouth sores do not get much worse, because that is really one of the worst parts of this.  I hate to see him in pain.  Nate had a turn in the play room today and made two, short trips in the wagon.  He doesn't have enough energy to do anything more than stand for a few moments while getting showered or weighed.  He is such a sweet, strong boy.  He is in good spirits and is still drinking.  He is just very tired and sleeps most of the day on and off.

I hate to be away from him but know that my weekends with Wes and Ellie and my Wednesday at work are really good for both of us.  I feel positive and strong.  This is not easy to do when you watch your baby suffer like this.  Picture your child's worst flu (with vomiting, diarrhea, fevers and sore throat) times 100...for 7 months (with a few breaks).  It's exhausting and depressing.  It's hard not to get sucked in to his pain, but I can't.  I need to stay happy and positive, so that he knows it's going to be ok.  I can't look back and I can't look ahead too far.  I have to stay in the moment and help him get through this moment and on to the next.  Soon, we will be over this hump too.

This weekend, Nate said to Chris, "I would like to take all my medicines so I can get better and go home.  Then I can go wear underwear like Wesley, because I don't want to wear diapers anymore.  I'm a big boy".  Oh man...my poor boy.  He's getting so big and smart.  He's starting to realize that this life he lives is not a normal life for a three year old.  How am I going to explain to him that we still have a good 8 or 9 months of intense treatment to go?  Radiation every single day, probably with anesthesia.  Then, on to week long hospital stays again for antibody treatment which causes so much pain that it may end up being the worst treatment of all.  I guess I will just have to explain it all to him...one day at a time.

We Can Do This!

It has been so great being home!  Nate has really made great strides.  It took much longer for him to bounce this time...but, bounce he did.  He's not 100% by any means, but he is doing so, so well.  Yesterday, he was riding his tricycle, running around and playing hide and seek with the neighbors.  Really, it is all I dreamed of and more.  I had almost forgotten how beautiful it is to see him play.  We've tried to shove as much fun in as possible and Nate has been living it up.

We started the transplant process on Monday.  I met with Nate's transplant doctor, who I love, to go over the process again and to sign new consents (the previous consents I signed are not valid now that we have dropped out of the study).  We have heard nothing but awesome things about the whole transplant team, and I believe it.  Nate's doctor makes me feel like we can do this...like it won't be as bad as I fear it will be.  They will take great care of Nate, I know it.  After the meeting, Nate had some blood drawn, then received a medication called palifermin that should help decrease the severity of the mucusitis (mouth and GI sores).  Unfortunately nothing can prevent it completely, but I hope and pray that Nate's mucusitis will be as minimal as possible.  He already had such a rough time with it during rounds 4 and 6 of chemo.

Tuesday, I took Nate to the dentist.  Nate had gone to the dentist a month ago for his pre-transplant exam and everything looked good.  Then on Friday, I noticed that all 6 of his bottom front teeth have extensive decay.  It just happened so quickly.  We had to have the dentist take another look to make sure that none of the decay could cause an abscess any time soon.  Nate can not have any known risks of infection, going in to the transplant process.  Luckily, he is not at risk for infection, but his bottom front 6 teeth are destroyed from the chemo and vomiting.  The enamel on the rest of his teeth isn't great either...they aren't far behind.  Just another gift cancer treatment is leaving behind.  I am trying not to let it get to me.  I am trying to concentrate on the task at hand...transplant.  But it's hard not to dwell on those sweet little teeth that I watched come in and brushed so carefully, begin destroyed so quickly and completely.  We will do our best to slow the progression of the decay so that it doesn't decay his adult teeth, but the hard truth is that his adult teeth are most likely already affected.

After the dentist, we went to clinic for Nate to get another injection of palifermin.  He also had to have both of his sinus cavities swabbed for viruses.  Certainly NOT one of Nate's favorite things to have done.  I then took Nate over to the "big hospital" to get an xray of his abdomen.  He has been having a lot of abdominal distention and bloating since he has started eating again.  This has been worrying me, in the back of my Mommy brain, because his abdomen is where the tumor was.  I got a call from his doctor last night saying that the xray was normal, except for an "emormous amount of stool".  I've never been so happy to hear the we have and enormous amount of stool coming our way!  The doctor assured me that the chemo he gets for transplant will give him such bad diarrhea that it will clear everything out.  Wes had a half day of school on Tuesday.  So, after the xray we went home and got Wes and Grandma and went to Jambo indoor amusement park.  Nate had been asking to go there and had a blast playing goofy golf, riding the train, bowling and playing skee ball.

I worked today and Grandma took Nate for his last palifermin injection.  Tomorrow after lunch, Nate and I will check in to PCH for an indefinte amount of time.  They say to plan on 4 to 6 weeks.  I will write a post tomorrow that will better explain what a stem cell transplant is and the process we will be going through, over the next 4 to 6 weeks.

I am so thankful for this fun time we have had at home and the strides that Nate has been able to make.  Nate is up to 15kg, which is still a couple kg below where he should be, but is really incredible considering where he was.  I really wanted to see that "15" number on the scale before transplant...and there it was!  I know we have a really tough road ahead over the next few weeks (all of us, but especially Nate), but I know we will make it through.  God has brought us this far and we have faith that he will continue to carry us (especially Nate) through the storm.

I would like to ask for some prayers for our little buddy RJ and his family.  We met RJ when we were in New York for surgery.  RJ's disease is progressing through treatment and his family has been told that there are no treatment options for him and that he has days to weeks left.  RJ just turned 2 and his family was forced to make the decision today to take him home on hospice care.  You know, I have now been introduced to this world of childhood cancer.  I have heard many stories of progressing disease and children not doing well.  I just can't help to think that...I rubbed this little boy's head...I hugged his parents.  This is just too real, and my heart is broken.  I believe that there could be a miracle out there for RJ, I will continue to pray for that miracle and for peace and comfort for him and his family.

What a Difference a Year Makes...

Nate wanted Valentine's Day cookies.  I brought home a cookie decorating set that I found at work after I got off last night.  He was very excited and as he was decorating and eating his cookie, I realized that we had done this same activity last year.  Honestly, it is very painful for me to look at the picture of Nate from last year.  I am grieving the loss of that little boy, and have not had adequate time to do that.  For the last 7 months we have been on a crisis freight train, that we will continue to ride for almost the next year.  We are constantly pushing forward, trying to get Nate to the next step so that we can be through this nightmare.  We keep moving forward and somewhere in the back of my mind, I have these thoughts that we just have to get through this treatment and Nate can go back to normal.  The hard truth is, though, that we can never go back.  That life...is gone.  That little boy...is gone.  He is not a baby anymore.  He is growing up...in a cancer world.  Last year, Nate didn't know any more of a hospital than coming to visit Mommy when his baby sister was born.  Healthy boy that he was, he barely knew a doctor's office.  Last year, none of us had ever stepped foot on the oncology floor of a children's hospital...now, it is home.  It is hard to look at that picture and see what cancer treatment has done to Nate's body.  I am sure that Nate weighed the same or more, in that picture one year ago, than he does now.

Don't get me wrong.  I am grateful for my son and where he is, in this treatment right now.  This morning, he came in to the bathroom 3 times during my shower to tell me things.  THAT...is the Nate I know and love.  I have never loved and appreciated his feistiness more than I do now.  We have also met some of the most beautiful, incredible people through this process.  I don't think I would have EVER known the amount of beauty and strength that exists on the 7th floor of PCH.  I am grateful that my eyes have been opened to the world of childhood cancer.  These babies NEED US!  They need awareness and they need money.  They need less toxic treatments.  They need treatments that won't ravage a small child's body the way that Nate's has been ravaged over the last 7 months.  They need a cure!

I am grateful...but I am still grieving.  This is the life of a cancer mom...I don't think I'm alone.  I hope and pray and BELIEVE that next Valentine's Day, I will have a photo of Nate decorating another cookie...cancer free, chubby, and with a full head of hair.

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.

Life is Hard

I know this is not news, everyone knows that life is hard.  I've had my share of hardships, but never knew exactly how painful and cruel it could really be until July.  Why does Nate have to experience this intense pain at barely 3 years old?  I have to believe there is a reason somewhere in all this, but I don't think I'll ever think it's fair to learn these lessons through a child.

I haven't written in awhile, for several reasons.  Really, I've barely been holding it together for Nate.  I haven't been in a good place and any post I wrote would be so chalk full of four letter words that my computer would probably have exploded.  I've also been so physically, mentally and emotionally exhausted that rehashing the days events was just more than my brain and heart could handle.  All I could handle was a few Facebook posts, pleading for prayers for my little boy.

Nate is sick, very sick, and has been for awhile.  His poor little body has had too much.  First, he had major surgery and just as he was beginning to recover and regain his appetite, he was hit with a nasty stomach virus.  He was not even given time to recover from the stomach virus, when his sixth round of chemo was started.  All this has resulted in a little boy who has not eaten more than a couple bites in more than 3 weeks.  He has lost more than 5 pounds, which is a lot on a 35 pound boy.  He vomited non-stop for almost 2 weeks, despite (and sometimes because of) constant anti-nausea medication.  He spent his 3rd birthday in his corner of the couch, propped up by pillows with barely enough strength to open a present.  He has barely been able to walk for more than 2 weeks and hasn't walked at all for almost a week.  He doesn't have to strength to sit, let alone stand.  Chris, Nate and I haven't had more than a couple hours of sleep in the more than 2 weeks.  We all...especially Nate...need a break.

Last Monday, I took him to clinic and despite his lack of energy, all his numbers looked good.  He was given some IV fluid and anti-nausea medication and we hoped he would start feeling better.  The real pain began on Wednesday.  He woke up with what I assumed to be mucositis (inflammation of the mouth and GI tract all the way down to his rectum), because he had been through this before...when he had these same drugs for round 4.  He could barely talk or drink.  It was clear that his ANC had tanked and we prayed that he would not get a fever.  He was running warm all day, but I never got a temperature greater than 99.8. 

Thursday morning, he was warm again and it was time for his clinic visit.  He was very tired and lethargic, but he also had not slept at all the night before.  We were a little late because he had vomited all over both of us as I was carrying him to the car.  We had to wait in the waiting room for a while and by the time he got in to have his vitals checked, he had a fever and his blood pressure was very low and heart rate very high.  His body was clearly under a massive amount of stress.  His blood was drawn and when his ANC came back as zero, they began to move quickly.  When you have a child going through chemotherapy, with no immune system, a fever and a system that is under stress, they automatically assume he is septic.  Blood cultures were drawn, fluid and antibiotics were started and he was admitted to the hospital.

The past few days in the hospital have been frustrating and tiring.  He keeps spiking fevers several times a day.  Two nights in a row he had fevers above 104.  They initially start with 2 antibiotics and add a third (big dog) antibiotic if cultures come back positive or if fevers keep coming.  He was started on the 3rd antibiotic because of the fevers, but his cultures are all still negative.  Next they look at the poop.  Especially because he has been having bad diarrhea.  The doctor ordered a stool culture on Friday and he had some big poops on Friday, but the culture didn't get done.  Saturday, his diarrhea was so watery that they couldn't get anything to do a culture.  Finally, Sunday morning he had a poop that they were able to culture and it came back with c. diff., a common infection for kids on chemotherapy to get (Nate has had it once before).  This was actually great news because we now had a possible explanation for the fevers.  He was started on a 4th antibiotic which is given by mouth and is specific for c. diff.  Since starting this antibiotic last night, we have seen some improvement.  He is still getting fevers, but they are much more low grade and he is a little more perky.  Probably because the fevers have been making him feel like crap.

The fevers are still no good though, so tomorrow we think they will be starting a fungal protocol.  He will be started on an antifungal and will get a CT scan of most of his body, looking for a fungal infection.  The problem with the CT scan is that it could show a false negative, meaning there could be a fungal infection that doesn't show up on the scan...so, they have to start the antifungal anyways.

We are also discussing his nutrition, because until his ANC comes back up and his mucositits heals, he will not eat anything.  They may start him on TPN (IV nutrition) tomorrow.  All this means that it may be a long time before he is able to come home.  The more things they put him on, the more things they have to be confident they don't need and can pull him off, before he can come home...even when his ANC comes back up.  Unfortunately, he may not need any of it.  The only confirmed infection is the c.diff. and the medication he gets for that is by mouth and can be given at home.  Everything else is being given because they can't take a chance that he has an infection hiding somewhere.  His body can't defend an infection and it would kill him.  We are desperately hoping to get him home by Friday so that we can turn our New Year's Eve and Day in to a 2nd Christmas Eve and Day, just for Nate.  We also just can't wait for him to be happy and feeling good again.  That just can't come soon enough.

Christmas was hard...that is why I want a second chance at it.  We had to do our best to make it special for Wesley...but it was not easy to paste on a smile when you are only getting 2 children ready for church and filling 2 stockings.  All of our family took turns at the hospital so that Chris and I could be everywhere we needed to be for all of our kids and families, and we couldn't be more grateful.  Nate mustered up enough energy to open up one present and to smile for a picture with Santa, but honestly, he couldn't give a crap if it was Christmas or not.  He was in pain and just wanted it to stop and for everyone to leave him alone.  He's pretty pissed off and so am I, so how can I blame him.

Instead of listing all the things I'm pissed about (though the above gives a pretty good description), I will list all the things I am grateful for.

1.  Strength from God himself.  I am mad and sad, but I am strong right now.  I prayed for this strength and I know it comes only from God, because otherwise there is no way I would have enough strength to move.

2.  My babies.  Wes and Ellie are healthy and Nate may be in pain and stuck in the hospital, but he is here with us.  There are many, many children who are not.  Way too many.

3.  Surgically cancer free.  I look at Nate and the pain he is in and I am beyond grateful that the problems he is experiencing are purely treatment related.  There are many children who are in much greater pain because the cancer is winning.  FU cancer!

4.  Spectacular hospital staff.  Nate has had the privelege of being taken care of by some really spectacular people.  Everyone at the clinic is awesome and our clinical nurse coordinator is the best.  We also have a favorite nurse at the hospital who happened to be Nate's nurse for several days of this hospital stay, which has truly been awesome.  I want to write an entire blog post about how awesome this nurse is, but I want to ask their permission first.

5.  Our family.  Really, we are so, so blessed.  Taking care of us and our children, sitting all day and sleeping at the hospital, wrapping gifts...everything.  I don't even know where to begin.

6.  Big private rooms.  It may seem isolating at times, but we never experienced the old building and I know that this has to be better.  I was able to bring all of our family's presents to the hospital to wrap while Nate slept, it was quite a sight.  There's no way I could have done that in the old hospital.

7.  An empty hospital.  The 7th floor was really more empty than I had ever seen it on Christmas Day. Someone from Hope Kids came for a visit and to bring a treat to all the Hope Kids who were stuck in the hospital.  She said most of the kids that were supposed to be there had gone home.  I am so happy that they were able to get so many children home to be with their families on Christmas Day.

8.  Nate's age.  Nate's age and stage of development has made a lot of things easier with this cancer treatment.  One example is Christmas.  Nate has absolutely no expectations for Christmas.  He doesn't know what day Christmas is and he doesn't remember our traditions.  We can do anything for him on any day to make it super special.  I am so grateful that he was not in the hospital in pain...and depressed about missing a normal Christmas.  Just another year or two older and it's a whole different ball game.  Wesley had the seconds counted down to Santa's arrival this year.  So, I am grateful that we were able to give Wes the Christmas that he wanted and deserved and we will be able to give Nate something equally as special when he is feeling up to it.

I think I will stop there.  I am grateful for so, so many more things, but I need to get some sleep and get ready to fight another day tomorrow.  Thank you for keeping Nate in your thoughts and prayers...he really needs them right now.



Home Again

We're home...and so happy to be home!  We had a fine flight home with some of the friendliest airport and Southwest crew that I've ever come across.  Security at Newark was nice and went out of their way to help us (Jen and I looked a little ridiculous with the amount of stuff we were lugging around).  While we were getting through security a lovely flight attendant asked where we were headed and if she could help us carry anything.  Turns out, she was one of the attendants on our flight and she carried Nate's car seat for us and put it on the plane.  She was absolutely the sweetest thing and took great care of us (and everyone else) on the plane.  During the flight, one of the pilots invited Nate to come in the cockpit after we landed.  Nate was very excited and shy and nervous.  Everyone was just over the top nice to us and it made the flight that much nicer.  You might think that everywhere we go, people would go out of their way to be nice to the little bald boy, but really it isn't the case.  Most people stare while trying to look like they don't notice him.  It's just so nice when people acknowledge my strong little boy and the battle he is fighting right now.

Nate has an appointment at clinic in the morning to be admitted for round 6 of chemo.  This is hard.  I've been away from home, mostly in the hospital, for almost 2 weeks.  We get 2 days home, then back to the hospital for 4 more days.  This also means the the timing of Christmas just sucks.  This is the worst time to start this round of chemo because it means his counts will be dropped at Christmas time.  There is a small chance that he could be on the upswing at Christmas...and we will pray for this.  Worst case scenario, he gets sick or gets a fever and is in the hospital for Christmas...this will just kill me.  The other possibility is that he makes it through Christmas without a fever, but his counts aren't recovering, which means we will have to limit his exposure to people (no church or big family Christmas party).  This would also be no fun, but if he is able to wake up in his own bed and run to the Christmas tree on Christmas morning, my holiday will be complete.

So, tomorrow he will start more chemo and we have to protect him from the many, many germs that are out there this time of year, if we have any hope of having him home for Christmas.  That means that this weekend was the only time we had to do anything fun for the holidays with the kids.  Visiting Santa at the mall, picking out our small "real" Peanuts Christmas tree, visiting the train park Christmas lights, going to a friend's Christmas party or seeing a movie in the theater, because all of this stuff will be off limits starting tomorrow.  I would love to tell you that we ran all over the city and had a grand old time this weekend.  We did not.

Saturday morning we got up and got everyone dressed in their cutest red outfit.  We headed to the mall for lunch and a visit with Santa.  Nate would not eat anything.  He laid his head on the table and said he wanted to go home...so we did...without seeing Santa.  He took a nap, and we hoped he would wake up feeling better, eat something and we could go pick out our tree.  He woke up and threw up when Chris gave him some medicine.  The rest of our weekend was spent trying to get Nate to eat and drink, without throwing up.  We don't know why he is throwing up.  We'll see what the doctor says tomorrow.  He finally started asking for some food tonight and ate a handful of stuff...then threw it up when I gave him his nightly medicine.  We're not sure if this will delay chemo at all.

This has been really hard.  I am happy to be home.  I am happy to have this surgery behind us, but Nate, and our family's fight is so far from over it makes me sick.  Some days I can handle the enormity of what we are going through, some days I can't.  I have so much to do and really, I don't want to do any of it.  I want to crawl under my covers and hide.  I tried on Saturday...it didn't work.  There is just so much I hate about this life we are living now.  Am I thankful that Nate is here with us and beating this?  Yes!  I am beyond thankful, but I am pissed that I have to be thankful that my little boy is alive.  How often to you actually think about how thankful you are that your children are alive?  This is something I think about constantly.  Also, I'm convinced that Ellie has Neuroblastoma.  This is not a logical thought (we actually had an ultrasound of her abdomen done after Nate was diagnosed), but I think about it all...the...time. 

All I want to do is bake cookies and decorate gingerbread houses, snuggle on the couch with my family and watch Christmas movies.  I want to get hot chocolate take the kids to see all the pretty lights in the city and pick out and decorate our Peanuts Christmas tree.  I want to do Christmas crafts and help the kids find the Elf on the Shelf every morning.  We can't do any of these things.  Our family is separated, half of us in the hospital, half at home.  This is not how it is supposed to be during the holidays...or ever.   It's been a really rough weekend, but I'm ready to tackle this thing in the morning.  I may hate this cancer life, but it is our life and all I can do is get up each day and try to make it through the day with a smile on my face.  So, that's what I will do tomorrow.

Discharge!

I woke up this morning, rubbed my eyes and looked at the clock...5am...fever time.  I jumped out of bed (hospital couch) and checked Nate's forehead...no fever!  I went back to bed for a couple hours and when we both woke up, I confirmed with the nurses...no fever!  Hooray, we are out of here!  We could have walked out of there first thing in the morning but we had to wait for the pharmacy to send up his pain medication to go home.  Jen walked over with the stroller to help me carry Nate's stuff back to the Ronald McDonald House...and we waited...and waited...and waited.  Dang pharmacy.  After several hours we decided to leave and come back later for the pain medicine.

We made it back to the Ronald McDonald House and ordered some lunch for delivery.  Nate ate nothing and as soon as we got back to our room he fell right asleep...he was just pooped.  We let him nap for a couple hours while we showered and I ran a few errands to find some snacks that Nate would eat and some rain gear (it has been raining all day today).

When Nate woke up we took him (ok...really we took Jen) back to the Toys R Us in Times Square.  We got some dinner at the Hard Rock Cafe and Nate ate half of a hot dog and a bit of a chocolate shake...more than he's eaten at a single meal, in a couple days.  He's still complaining of pain when it gets to be time for another dose of pain medication...which kills me.  I hate to see my little boy in pain...it just sucks.  I'm so thankful for a successful surgery and a fast recovery but sometimes it just gets to me that we have to be doing any of this.  I'm a little sad today...I think I'm just more than ready to come home.

Nate has a follow up appointment with the surgeon tomorrow morning.  I'm hoping we can get in and out of the visit quickly and hopefully it won't be raining and we can see a few more sights.  We have plane tickets heading home on Friday and I can't wait.

Post-op Day 4

Another super day for Super Nate...if it wasn't for those stinkin' fevers last night.  No one is sure where they are coming from.  Everything has been cultured and everything is negative.  Most likely, it is a little virus.  He came to NY with a slightly runny nose and when they swabbed his nose, it came up positive for rhinovirus (the common cold).  If it wasn't for the fevers he had last night, he would have been released from the hospital today. 

Unfortunately, when you have a kid with cancer and a Broviac (central line in his chest), no fever is a small fever.  They are talking about changing out his Broviac as a precaution.  They can't take the chance that there might be an infection hiding in his line that they are not catching with the cultures.  Unfortunately, this means more surgery.  Right now, we are just praying, waiting and seeing.  If he doesn't spike a fever tonight, we will be released tomorrow, Nate will have a follow up appointment on Thursday morning and we can be on a plane on Friday.  Then we will talk to Nate's doctors in Phoenix about possibly replacing his Broviac (this will more than likely have to be done at some point during his therapy...they don't last forever).  If he spikes a high fever tonight, he may have to get his Broviac replaced here.  We are hoping that doesn't happen.

The last few days, he seems to have been getting a fever at about 9pm, which we usually got to break with Tylenol, then he would spike another at 5am.  So far tonight, he got past the 9pm fever.  His temperature did rise, but didn't quite get to "fever range".  Now, he has cooled off quite a bit.  I'm anxiously awaiting 5am because I'd like to get out of here and headed home ASAP.  I miss my babies and I need a fountain drink something wicked (New York City does not believe in fountain drinks).

Other than that, Nate had an awesome day.  His kidney test was simple (I don't know when we will get the results).  Daddy caught a flight back home to Wes and Ellie and we got a special surprise visit from Uncle Chris, who is in town for business.  Chris was very surprised at how well Nate is doing.  He is no longer hooked to an IV pole, because he doesn't need anymore IV medications and he was almost running around the halls.  He played ball with me, the physical therapist and Uncle Chris and was kicking and bending and throwing like a champ.  I don't think Chris expected to be playing ball with a boy who had major surgery 4 days ago.  My super sweet friend, Jen, arrived tonight, after a long, delayed plane flight, to take care of Nate and I until it's time to come home.  I feel so much better having her here.

One last story for today...because I have to get this written down to keep for all time.  While we were waiting in nuclear medicine for Nate to be injected for his kidney test, we were going through all the pictures and particularly the videos on my phone.  I was sitting in a wheel chair with Nate in my lap and we'd been there for a long time.  In the middle of one of the videos of Wes and Nate that we were watching, Nate started to whimper and cry.  I quickly turned off the video and started asking where Nate was hurting, worried that I was holding him in a way that was putting pressure on his incision.  He whimpered, "I miss my brother".  Oh my gosh, it was all I could do to not break out in tears right then and there.  It was the sweetest and saddest thing.  Nate hasn't, through all of this, all the hospital stays, really expressed much sadness for missing home or people.  He really just goes with the flow.  Wes and Nate fight like cats and dogs most of the time.  Just recently is Wes starting to see the value in having a little brother.  Most of the time Nate ducks and swings as he approaches Wesley, as a defense mechanism.  It was just so sweet to see him cry over missing his brother.  Now, I REALLY can't wait to get home.

Chick Magnet

Nate's scar...before and after.  The surgeon used the same incision and extended it a bit around his side so that he could get at his liver under his rib cage.  Part of me says, "Hey, we just got that thing healed!", but it is nice that he will only end up with one scar from both surgeries.  One..."totally awesome, they cut my tummy in half, twice, when I was two, don't you feel sorry for me and want to hug me, ladies"...scar.

Post-op Day 2

Nate continues to do fantastic! He walked part way to the play room last night and played for a while.

Walking really hurts, so he is NOT happy to do it, but it's good for him so we smile and cheer him on. Part of the pain of walking right now is the chest tube. It really isn't draining anything anymore, and hasn't all day, so it should come out tomorrow. He was also able to start a full liquid diet yesterday afternoon, instead of just clear liquids which allowed him to drink his favorite drink of all time...milk!

 

 

Last night, he was talking on Skype to Grandma and Linde and they asked how he was feeling. He said, "My tummy hurts, I can't go home". Then he said, "My tummy got cut in half when I was sleeping". Oh my gosh!! The poor kid! Really, what must he think of all this?! We tried to explain what was going to happen, but he isn't even 3 yet, how could he possibly understand it.  I just hope he doesn't become afraid to go to sleep.  I already know it's going to be rough getting him to sleep in his own room when we get home, because he has had so many days now with me and/or Chris in the room with him.

Last night, he spiked another fever that never really went away.  They ended up starting him on an antibiotic.  I guess they usually give an antibiotic for 24 hours after surgery and never started Nate on one.  They also took some blood cultures but we haven't heard anything in regard to those yet.

This morning he got up and had a waffle, 3 cartons of milk, and a Gogurt.  I got him up and walking and he and I played in the play room for 2 hours while Daddy went back to the Ronald McDonald House and showered.  I kept asking him if he wanted to leave the play room and he didn't.  He was having too much fun.

Last night, before he was allowed to eat food, he requested McDonalds, after seeing a commercial.  The poor kid was probably thinking, "We've been staying at McDonald's house for several days now and the guy hasn't even given me a Happy Meal!"  So, Daddy brought him a Happy Meal for lunch.  He ate all his apples, one nugget, most of his milk and most of a Danimal smoothie.  He then requested more McDonalds for dinner (more McDonalds in one day then I usually let him eat in several months) and got a Baskin Robbins milk shake for dessert.

I know you wanted to know this, but Nate has also pooped a couple times today.  This is all great stuff when you're talking about being released from the hospital.  He has been fighting a little fever, since surgery and also a racing heart rate.  His heart rate runs a little on the high side normally, but it hasn't been under 150 since surgery, which is pretty high.  A high heart rate is usually due to pain (check), fever (check) or a fluid imbalance.  We've been trying to keep his pain and fever under control but the heart rate hasn't been dropping.  Right now, as I type this, I've been watching his heart rate drop.  It's now down to 126 and he doesn't feel warm to me at all (the nurse will come in soon to get the official temperature).  I also asked him if he wanted me to push his button (pain medicine button) before he went to bed and he said, "no".  I'm hoping this is all an indication the his fever is gone for good and his pain is subsiding a bit.

We walked to, and played in the play room again tonight, right before his milk shake and bed time.  He cried a lot on the way there, but barely complained on the way back.  Such a strong boy.  I'll check with the doctor in the morning to see how much longer they think they'll keep him.  Once the chest tube is out...he's eating, walking and pooping.  As long as the fever stays away, I can't imagine they'd need to keep him a whole lot longer.

Post-op Day 1

Shortly after I sent the last blog post, Chris and I were able to call Wes and Ellie and video chat with them.  Nate was opening his eyes now and then, apparently heard his brother's voice and wanted to talk to him.  We put the phone in front of Nate and as soon as he saw Wesley's face he stuck out his tongue and blew raspberries at him!! It was the most beautiful sight!  I laughed hard as tears rolled down my cheeks.  He had just come out of major surgery a couple hours before, was still coming out of anesthesia and was on a bunch of pain meds to try and dull his pain...but that feisty personality...it's in there and can not be contained!

The night was ok.  Nate was obviously in a lot of pain and spiked a fever, which was causing his heart to race...all very normal after a big surgery like this.  I was in and out of consciousness all night and tried to be helpful but kept falling back asleep without knowing it.  Luckily, Nate had a great nurse who stayed on top of his pain and got the fever down.  Next thing I knew, it was 8am and Nate was sleeping soundly.

This morning, they took out the IVs he had in each hand and the arterial line he had in his wrist.  Hooray for free hands!  He has been sitting up all day watching TV (he even quietly sang the Phineas and Ferb theme song this morning) and playing a little.  They took his catheter out (another big HOORAY) and we took him for a short little walk.  As soon as he got up and moving, his chest tube drained a ton of fluid...that is a good thing.  The chest tube is his last "extra tube" and as soon as that comes out, he will be on his way to being discharged.  They will remove the chest tube as soon as the drainage from it slows down.

His lungs are a little crackly...also normal...so we are having him sit up, blow bubbles, we will have him walk again in a bit, and we are gently percussing his back to break some of that stuff up.  We have to help him get that stuff out of his lungs so it doesn't sit in there and cause an infection.  He has been taking sips of water and juice today and will slowly build up to eating.

Pretty great progress considering he came out of surgery less than 24 hours ago!!  Such a little champ!  Softie is faithfully by his side, helping him every step of the way.

Success!

This may not be the prettiest picture I've ever posted of Nate, but it's real, and really it's spectacular.  As you'll notice, our little super hero did it again and he is sucking on his Nuk...not a breathing tube!  He was able to come out of the OR off of the ventilator which means they also were able to take out the NG tube and we get to stay at MSKCC and not have to go across the street to the other hospital.  They also didn't have to place the central line.  So, he came out of the OR with 3 extra lines/tubes instead of 6.  The sooner the tubes come out, the sooner he'll be ready to go home!  The less tubes that have to come out, the better.

He is doing great.  As you can imagine, he is in pain.  He is on a good deal of pain medication to manage his pain and we are hoping he will mostly sleep tonight.  Tomorrow, we will get him up and started walking.  He has woken up a few times, briefly.  Once to take off his pulse ox meter (the little sticker wrapped around his finger to monitor his vitals) and tell me that he wanted his catheter out.  Never mind the giant gash in his side...he just wants that thing off his finger and that tube out of his penis!  Poor kid, hopefully the catheter can come out tomorrow.  Then he woke up to tell us that he wanted the oxygen mask off and his Nuk in.  Wish granted, they'll just keep an eye on his oxygen levels and make sure everything stays good.  The third time he asked us to turn on the TV, then fell back asleep before we got a chance to turn it on.  So, we're currently watching the Disney Channel so he doesn't wake up to yell at us to change the channel to "kid shows".  Such a little fighter!

The surgeon said that he lifted Nate's liver out and chopped out that tumor!  Hooray!  He did take some funny looking lymph nodes in the area that probably have Neuroblastoma in them.  This is a little scary but is very normal, I guess.  There are a lot of lymph nodes in the area and they frequently get Neuroblastoma in them.  We will have to wait for the biopsy results to see if they have active or inactive (killed) Neuroblastoma in them.  Either way...they are not inside my baby anymore!  The surgeon said that he lifted up Nate's aorta, vena cava, kidney and portal vein and looked all around...no Neuroblastoma!  Crazy...and awesome!

Nate will have round 6 and then will have a full work up of scans and bone marrow biopsy.  We are trying not to count our chickens before they are hatched...but we BELIEVE that Nate will be considered NED (no evidence of disease) at this time.  Amazing!  He will still have to complete his full course of treatment to make sure that every last Neuroblastoma cell is destroyed, but we love being ahead of the game.

Thank you to everyone for your thoughts, prayers and kind words today as we sent our baby into surgery.  I know God heard our prayers and Chris and I (and the rest of our family) really appreciated all the support.  It helped carry us through another rough day...with relatively few tears.  I will keep everyone updated on Nate's progress over the next few days as he recovers.  We love you all!

Surgery in the morning!

I really want to write a post explaining everything we learned at the meetings with the doctors on Wednesday, but I need to get some sleep.  The hospital called at 4:30 this afternoon and asked if we could move Nate's surgery up to tomorrow morning, instead of Monday.  So, we have to be at the hospital at 6:30am for pre-op preperations and he is scheduled to be in the OR at 9:30am New York time...7:30am Arizona time.  I cried...a lot...when they called and asked us to change his surgery.  This is better, for many reasons, which is why we are doing it, but it is still hard.  I wasn't quite ready, mentally or emotionally, to be putting my baby boy through this tomorrow.  So, please send prayers and good vibes to my sweet, super boy and to the surgeon and doctors.  I will try to write a more informative post tomorrow as we wait for Nate to come out of surgery.  It will be a long surgery, 5 to 10 hours probably...or as the surgeon tells all of his patients, "as long as it takes to do a good job".

Giving Thanks

I thought I was thankful last year.  I didn't even come close.  Cancer has taken many things from us, but I feel like somehow, this is a gift we have been given.  A gift I never wanted and wish I could  take back, if it meant my little boy wouldn't have cancer anymore.  It is not returnable, though, so I will enjoy it.  I feel like my super hero of a little boy has given me the super power to enjoy every, single, thing in my life.  Everything beautiful is amplified.

We are surrounded by THE most awesome people on this planet.  I know this must be the case.  People who have dropped everything, bent over backwards, and sacrificed to help our little boy and our family when we could not do it ourselves. I will never, in my life, be able to thank you all enough.  Chris and I keep joking that we are going to have to be REALLY good people after all this is over...but we are not joking.  For the rest of our lives, we will always strive to make a difference in the lives of others that you all have made in ours, because now we know what it truly means. 

So, on this day of Thanksgiving, I am brought to my knees with gratitude.  I am able to spend this day with my family, all of my family.  I now know how truly precious that is.  I thought I was grateful for my family last year.  I didn't have a clue.

One of my dreams, is that Nate will pass this grateful super power on to all of you.  That you may look around and see the beauty that is around you.  That you may really, truly appreciate your friends, family and especially your children.  I don't want any of you to ever be in the position that we are now, with a sick child.  If Nate's story can amplify the beauty in your life, without you having to suffer the pain, if cancer can give you this gift also...well, it still won't be worth it...cancer can go eff itself...but it will certainly make our journey a little bit sweeter.

My Heroes

Any time I was asked to write about my hero as a child, I always wrote about my mom. I didn't really know the extent of her strength back then, but I knew she was heroic.

My family has been affected by a cancer before...addiction. Really, we've always been affected by it. My father was an alcoholic, probably his entire adult life, until it took his life at the age of 58. My mom was wise and brave and got us away from that situation, the best she could. Then, the cancer spread to my brother...a childhood cancer. Really, the situation we faced back then and what we are facing today are so completely similar, it's sick.

My brother was 16 years old...and he was sick. There is no known cure...only treatment. Treatment that does not have a very high success rate. Really, he had a much lower chance of survival than Nate does. My mom was brave and she was strong, when she really wanted to hide under her covers and never come out. She also used a whole lot of four letter words...I wonder where I get it from?! She found the best course of treatment she could for her baby, jumped in with both feet...and prayed.

She had to give up absolutely every idea she ever had of what my brother's path would be. His path had totally changed now. She traded in thoughts of high school proms and graduations for lots of stinky, recovering boys sleeping on our floor and sobriety anniversary chips. She let him stay out until all hours of the night forming bonds with these kids that were fighting the same fight as him. She bought him cigarettes because, crazy as it sounds, smoking is an important part of recovery for a lot of kids.

My brother had to do all the work...and still does to this day, but my mom was the strength and the backbone behind it all. We had no idea if this treatment would work for him. We operated on faith alone. Many, many kids did not make it out the other side. Addiction took many of their lives in one way or another. My brother is one of the lucky ones. Lucky that the treatment was the right one for him and that the hard work he does every day, has paid off.

My brother will have 15 years sober, next summer. He is a spectacular man, and has a beautiful wife and son. His life is different from the life I bet my mom had envisioned for him...it's better. I'm sure she never wanted her son to struggle with addiction. Yet, without the struggle, he would not be able to help all the people he is helping today that are going through the same thing. He would not have met his wife. He probably wouldn't be the amazing, honest, down to earth guy that he is. How could she ever have imagined this amazing path for her son.


I tell this story because it keeps me going on my hardest days. We LIVED through this. My son is only 2 years old and while I didn't think I had any preconceived notions about where his life was headed, I guess I did. My plan certainly didn't involve cancer. When Nate's treatments are over, cancer will never be completely out of our lives. Even after he has several years of remission and is considered "cured", he will always have to be followed for whatever effects the chemo and radiation leave behind. This was certainly never in my hopes and dreams for him. Then I remember my mom and my brother. There is no way that I can possibly foresee the beauty this will bring to all of our lives. So, I remember my heroes. My mom, my brother...and my son. I cling to their strength. For whatever reason, this is the path that God has chosen for us, I have to bravely walk along, one day at a time, and enjoy the beauty along the way.

To my mom...I'm so sorry you are having to go through this with us. I know this is as hard on you as it is on me. You have been through too much in your life already. Some things are just not fair! You deserve a much easier road than this. Thank you for standing with me in this fight. I love you more than you'll ever know.

Life's A Beach

NATE IS HOME!!!!  Ah...life is good.  Everything...and I mean everything is much, much easier and better when we are all home together.  How did I ever think life was hard before this?  Now I know what hard is.  We are not happy that chemo has been delayed...but there's always the blessing...we are so, so grateful to have a happy, healthy weekend at home.  We are going to take FULL advantage of it...we haven't had one in a long, long time...almost 2 months.  Nate is due at the clinic bright and early Tuesday morning to see if his body is ready to start chemo again.  I think it will be...so, we will be prepared to start that day.  As soon as he gets the go ahead to start chemo, I will start making phone calls to New York to see if the chemo delay changes our travel plans.

Nate has asked several times, since all this started, to go to back to "our big house at the beach"...we rented a condo right on the boardwalk this year.  Does he just love the beach, like his Mommy?  Or does San Diego represent for him an escape from all this...a time when there was no cancer in our world?  We had been home from our trip less than 5 days when our world exploded.  I really think it's a little of both.  I sat with him on my lap at the computer and we looked at pictures of our trip together.  These pictures are truly painful for me to look at.  I want to go back to "our big house at the beach" too, Nate.  I want to go back there and freeze our life forever.  Life was easy and carefree.  Life will never be like that again.  Even when we make it through this, we will always KNOW childhood cancer, and once you KNOW, there is no such thing as carefree.  We will always have scans and an oncologist in our lives.  Our life will be a different type of beautiful.  We will have a SURVIVOR and we will have WARRIORS.  We will continue to fight for the little ones who fight for their lives every day.  Yes Nate, we will go back to the beach...soon.  I can't wait to take you back to the beach.

A Best Friend's Perspective

My sweet friend, Bethannah, moved to Wisconsin shortly after Nate's diagnosis. She was in town last week to visit and help me get Ellie's birthday party together. She stayed with us and got an unfiltered look in to the every day life of a "cancer family". As close as our friends and families are to this, I don't think they still completely understand what our every day life is like...they get to walk away occasionally...we do not. Bethannah got a little taste of our life this week and returned home with a heavy heart. She felt the need to write about her experience to share with others. So, I thought I'd share it with you...


It was a heavy, heavy week and my heart is heavy even now as I write this.  My best friend’s 2 year old son who also happens to be my husband’s baby cousin is fighting for his life.  You may have heard of him by now, his name is Super Nate Dinoffria.  He has Stage 3 High Risk Neuroblastoma, a very rare aggressive childhood cancer.  (I can’t even write this without crying). 

Beth and I had been planning this trip for a few weeks now.  The plan was for me to come out to Phoenix the week before her daughter Ellie’s 1st Birthday to help get the party ready since she has very little free time and we were hoping to get in some girl time and get her mind off of things for awhile.  At that time Nate was looking good.  He had just finished a round of Chemo and seemed to be handling this round better than the others.  Even though he was supposed to be home the week I was there, we knew there was no guarantee.  Sure enough a couple days before my arrival he spiked a fever and had to be taken to the ER and then was subsequently admitted.  This was devastating for Beth and Chris.  At that time it had been 90days since their little boy was diagnosed and 60 of those days had been spent in the hospital.  Not only did this mean he was in the hospital but it meant he might miss his baby sister’s 1st birthday party.  In tears Beth said to me, “Well it looks like I won’t see much of you this week.”  I knew how badly she needed this break but I honestly didn’t grasp the full concept of what she was saying until I arrived.  Nothing could come close to preparing me emotionally for the week ahead.

  I talk to Beth everyday and felt I had a pretty good understanding of what life (or I should say her schedule) looked like.  Let me say, I feel like last week I got a rare opportunity to be a fly on the wall, so to speak.  I could and will never understand what it is to walk in her shoes, but at this moment God had me see things I had never seen before and maybe it was so that I could write this and share their story so that others had a better understanding.  I know for me personally, this last week has forever changed my life and impacted me on such a deep and profound level that I will never be the same.

  When I walked into the Dinoffria home there was this energy about it.  I was expecting there to be a deep layer of sadness but there wasn’t.  You walked in and could feel the love in this family. There are pictures all over the walls of friends and family and of course of their 3 children.  Wes 5 years, Nate 2 ½ and Ellie Belly who just turned 1 years old.  I joked with her that her house was like Disney Land for kids.  You can see how much love and energy goes into their children just by being in their home.  Beth was able to have a quick bite to eat with me before she had to head back to the hospital to be with Nate and relieve her father in law.  I wouldn’t see her until late that night.  I was left alone in this big house with my little boy and my thoughts.   I walked around looking at the pictures her children had drawn for them that hung on a string across a wall, children’s books scattered around with title’s like, “This is How Much I Love You.”  Toys in bins bubbling over.  A big play-set in the backyard where I pictured Nate and Wes running and playing with their Nurf guns…. but then was reminded of Nate’s weak state and how this family has only seen glimpses of his former rambunctious 2 year old self over the last 3 months.  A little garden that I knew she had planted seeds with her boys, that was now overgrown and dying off.  The pool that had turned green the 1st few weeks of chemo because no one was home to care for it, still had pool toys around it even though I knew they hadn’t been swimming since July. (They now have a “great” Samaritan that comes to their house once a week to treat and care for their pool for free). I remembered Beth telling me how she put Nate on the float to make him feel like he was swimming with the family when in reality he couldn’t because of the open chemo port in his chest.  The kitchen was left with a full dishwasher, dishes scattered from the mornings breakfast that they weren’t able to get to because they were rushing out of the house to get Wes and Ellie off to “that days” caregivers at two different homes in different areas of town.  (Wes had had the stomach flu for the last few nights and wasn’t feeling well enough to go to school and Ellie was still recovering from mouth, foot and hand disease that was very contagious and spread to both her brothers and a 2mo old nephew.  Did I mention that Dad, Chris was just in the ER that last week with kidney stones and then sprained his ankle and was still reeling from the pain of that).  Yes, this home was undoubtedly filled with an abundant amount of love but the air was heavy. 

  I opened the door to this precious little boys room.  All of his favorite stuffed animals were all piled high on the floor in the corner.  He had some toys left out from when he was home playing with them.  The room was beautifully decorated to match little Nate’s personality and interests.  His bed was unmade from the last time he slept in it, more than 4 days at this point.  His changing table had all the things I have for my precious baby boy on top of it like baby powder, lotion, diapers and wipes…. but somehow it was different.  There was a basin there for when he had his bad nights of throwing up.  There was a medical pillow that was plastic so that it would be easier to clean in case he didn’t make it to the basin in time.  Medical supplies were peppered throughout and it made me realize I wasn’t in “any” little boys room, I was in Nate’s room and this is where I would stay for the next 7 days. 

  Suddenly the enormity of what this family is up against and what they have been through over the last 3 months hit me like a ton of bricks.  I fell to my knees in front of Nate’s bed and began to sob from the pit of my belly.  When I was able catch my breath I started to pray, plead and beg God out loud to make the pain stop! 

  I prepared dinner for Beth, Wes and Ellie at the “normal” family dinner time but was reminded that this was no longer a normal family when they arrived at 9pm.  Chris had worked all day and went straight to the hospital to stay the night with Nate.  The family didn’t cross paths that day and that was now the new “norm”.  You would think Beth would be exhausted, drained and exasperated from her long day of running around and her emotionally difficult day at the hospital with Nate, but she wasn’t.  HA HA HA… That’s a funny statement, let me take that back!  She most certainly was exhausted, drained, and exasperated but this was the 1st time since 8am that she had seen her son Wes and her baby Ellie and one of the only times she would see them that week.  Many of us would have called it a day and just kissed the kids goodnight and put them to bed right away, but she met them with such enthusiasm and love.  She ate with them, did homework with Wes, played a game of Go Fish, bathed them and read them stories.  She made sure their teeth were brushed and they got their hug and kiss before tucking them in, all with the sweetest, loving smile on her face as if she didn’t have a care in the world.  When she came to meet me out in the living room I could see her brokenness and the deep sadness in her eyes.  She missed her babies, she missed her husband and her family was no longer together.  (Tears, tears, tears are rolling down my face).  It was now after 11pm and the 1st time she got a moment to “unwind”.  This ball of yarn was much too wound and tangled to be unwound in one night!   I told her she should go to sleep.  She told me, she doesn’t sleep anymore.  She keeps her-self as busy as possible up to the last second just to keep her mind off of things.  On this day and everyday thereafter this week Nate was in excruciating pain.  This round of chemo had caused mouth sores that went down his esophagus, clear down to his rectum.  He would lay there in his bed with his mouth open, drooling because it was too painful to swallow his own saliva.  He wasn’t able to eat all week and had to be fed through a tube and by the middle of the week he stopped talking all together because of the pain.  Ask your-self day in and day out how you as a mother could watch your child suffer like that?  I can’t even for a second imagine how I could manage the pain of that.  On the nights that she wasn’t able to stay with Nate and it was Chris’s turn to sleep in the uncomfortable pull out hospital chair, Nate would cry for his mommy.  How do you choose that as a mother?  Your heart is ripped in half.  You want nothing more than to be with your son who is fighting for his life and 90% of the time that’s exactly where you are, but then you have your other precious children that need you too and are too young to understand why mommy and daddy aren’t home together anymore.  Why they don’t sleep in the same bed, why they don’t have dinner together anymore, why they can’t just go to the park when they feel like it or why mommy can’t drive me to school or pick me up anymore or volunteer at school like the other mommies.   Suddenly Wes’s best friend, his little brother is never around anymore to play with and when he is, he’s too weak to play.  Children can’t put those emotions into words like adults can, so his pain comes out it other ways and that is so painful to watch.  I wished I could talk my dear friend into going to sleep because she had a 12 hour day the next day as a Pharmacist at the local grocery store.   She couldn’t because this was the only times she had to prepare for her baby girls 1st birthday and this would be the 1st major family event since the diagnosis and she was going to make damn well sure this cancer didn’t get to steal this moment from them too.

  The next few nights I spent with Chris as Beth stayed at the hospital with Nate.  It was a time that I will always treasure because I got to know Chris in a way I never had before.  (Chris is Greg’s cousin and they were close growing up)  He is a private man with deep convictions that loves his wife and family so much.  He is very protective of his family and has such a soft heart for his wife.  Like most men the pain runs so deeply but they don’t express it as openly as woman do.  I could feel his pain and see the exhaustion in his eyes.  This family needs a break!  He was just like Beth with the kids and it was so heartwarming to watch.  Almost every night someone would bring dinner for them or had ordered them take out that was delivered (which warmed my heart and made me realize there are so many good people still left out there).  Chris would eat with the kids, talk about Wes’s day, share his excitement over the happenings in kindergarten life, bathe them and read to them every single night!  These parents brought joy to their children even in their darkest moments and that was inspiring to me!!!

  The other parts that were inspiring to me were the unsung heroes in this family.  It was like watching a well oiled machine.  I would ask Chris or Beth, “Who is taking Ellie today?” Or “Who is picking up Wes from school?”  “Who will stay with Nate while you run to the store?”  Sometimes it was 11pm and they didn’t know and I would ask and the answer was always the same, ”I don’t know right now, but we know it will be taken care of and work out somehow.  It always does. “   I personally have never witnessed anything like this in my life.  Both sides of the family astound me from Chris’s parent’s who spend many days and hours at the hospital with Nate so that Chris and Beth can get just the everyday mundane things done like going to the store, or when Beth has to work every Wednesday and some weekends they are there without questions. There is no complaining of their lives being put on hold or an attitude of look at all I’ve done for you, you don’t hear that they ever say things like, “well I had plans.” I am sure David who is Chris’s dad never imagined spending his retirement like this.  They just do what they feel they need to do for their children, they do what’s right, they are just there loving on that child and making sure his mouth is cleaned, he gets his pain meds on time and wipe his mouth after he throws up for the millionth time that day and on his good days keep him entertained.  There are nights when they sleep at the hospital just to give Chris and Beth time to be together as a family, a chance to sleep in the same bed.  I watched as Chris’s dad came to pick up Wesley and Chris to take them to Phienius and Furb.  All on his own this man bought tickets to take his grandson that he knew was hurting to a show to get his mind off things.  You should have seen how excited these 2 grown men and little boy were to be going to this kid show… It blew my mind!  Lol Beth’s mom and Aunt are just as deeply invested both physically and emotionally.  Everyday Beth’s mom picks Wes up from school and cares for him until Beth or Chris get home, which is as I said before is often very late at night.  She is a doting grandmother that pours love into her grandchildren.  At the time I was there she was sewing a vintage style dress for her granddaughter to wear for her 1st birthday.  She and her sister were over late one night helping with party decorations.  They too spend many hours at the hospital with Nate without flinching.  Ellie is 1, so those of you who have a 1 year old or who have know they are hard work.  In the beginning I remember Beth talking about maybe having to find childcare for her or having to quit her job to stay home with Ellie… those thoughts lasted a matter of seconds because once again these angels came into rescue them.  Chris’s Sister Liz has 2 toddlers of her own and has become the primary caretaker of Ellie along with their longtime babysitter Tracy when Nate is in the hospital.  Beth brags weekly to me about how well taken care of Ellie is and how blessed she feels to have these 2 amazing woman in her life.  Along with the children being taken care of you had food being dropped off, someone picking up their laundry to clean, pool man stopping by, a friend that threw together a car wash that raised a little under $2,000 for Nate’s medical bills and long term care.  A high school friend she hadn’t seen since then make Ellie one of the most beautiful birthday cake’s I have ever seen along with a smash cake and cookies for the party.  The out pouring of love from family, friends and the community alone is emotionally overwhelming.  It’s beautiful.  I felt like all of these people are such a beautiful example of God’s love for us.  They are each a light in a very dark time of Chris, Beth, Wes, Nate and Ellie’s lives.  Chris and Beth are very blessed to have the support they do and that became a very real statement when both Chris and Beth told me that there are children from babies, to toddlers and up that sit in the hospital all day with no family around them, no visitors.  At first I was so angry when I heard this!  How is that even legal?  The truth is many of these famiies have no family support, they have to work and take care of their other children.  Some of them are single mothers or grandparents.  It prompted me to want to look into volunteering to go visit these kids at the hospital.  Its heartbreaking and so inhumane!  You just don't realize how many families are suffering until it hits this close to home.  

   Saturday was the most heart wrenching day.  It was the day before Ellie’s 1st birthday party and we knew at this point that there was no way Nate was coming home.  His numbers were at 0, he had no immune system and he still was unable to eat.  At this point he had been in the hospital for 8days.  Chris was gone with Wes and it was just me, Ellie, Elijah and Beth.  Maybe Beth had had other days where reality hit, but it was safe to say this was the 1st day I had seen her at her lowest point during this process besides the day she found out.  It was the 1st major event they were spending  apart. They had to figure out who was sacrificing going to the party to stay with Nate and Beth had to muster up the strength to put this thing on.  I found her curled up in a ball in her bed with the covers pulled up over her and she was crying.  She complained of her chest hurting so badly she could hardly breath and she said she had felt that way since she found out her little boy had cancer.  I told her she was having an anxiety attack….   We talked through her feelings and I rubbed her shoulders as she cried it out.  I prayed with her.  She said she wasn’t sure she would be able to make it through this, it was all too much!  I agreed, it was all too much!!  I wish I had all the right answers or knew all the right things to say and do, but I don’t.  I just know that God see’s every tear, he hears every cry for help and he wraps his loving arms around you as you weep.  He will and is carrying this family through this and there is light at the end of this dark horrible tunnel.  I pulled back the covers, smacked her ass and told her to get her ass out of bed and let’s get this party done!  I got a glimmer of a smile and we went on our way.  (Another angel came through named Lilly who is Liz's Best Friend... she sat with Nate so that Chris and Beth could be together as a family to celebrate their little girls special day.  Blessings abound!)

  The day after Nate was diagnosed Beth, Chris and the kids were supposed to be heading to Sedona to have a family camping trip with us.  Our friendship was normal and carefree.  We met for lunch, planned play dates, family vacations and giggled about what our kids did that day.  This diagnosis feels like what the pictures looked like after the tsunami hit.  It had devastating effects and although their lives can be rebuilt and Nate’s chances of survival are looking good at this point, they will never be the same.  Nate is in the fight for his life for at least the next 2 years.  The side effects of the chemo, radiation, blood transfusions, stem cells transplants and so on won’t be known until or if they hit.  We are praying for a covering over his little body.  I couldn’t have anticipated our friendship going into this new dimension.  I am as real as Beth is, and perhaps that’s why we click so well.  I will say this is difficult.  Its not easy to see your friend go through something so painful.  I have asked God if I am strong enough to be there for her.  I know he wouldn’t have matched us up when He did if He didn’t feel I was.  This is painful all the way around, and honestly I need prayer to give me the wisdom to be the friend she needs right now. 

  I am sharing this story to raise awareness.  I am sharing this story for Nate.  He and the rest of this family; grandparents, aunts, uncles … they all need your prayers tonight.  I laid in Nate's bed every night and prayed with tears in my eyes to please heal this precious boy and give this family strength, peace and longsuffering.  Tomorrow will be day 12 in the hospital.  Please pray with me, please share their story.  Beth writes a blog that has become quite famous about her journey through cancer with Nate.  You can find her blog at www.supernatedinoffria.blogspot.com , you can also find Nate’s Facebook page by searching SuperNate Dinoffria or www.facebook.com/supernatedinoffria .  If you feel led to donate towards his long term care you can donate by going to ANY Wells Fargo Bank and ask for The Nate Dinoffria  Donation Fund or you can donate through paypal on the blog or his facebook page.  They also sell Super Nate bracelet's for $5 each that you can find on her blog and FB.
 
  Thank you for your outpouring of love for this family.  Thank you Lord for seeing them through this and being such a loving God.  I am reminded of the song “Blessings” by Laura Story.  You never know if what you’re going through is truly a blessing in disguise.  Nate has had this tumor since he was growing in Beth’s womb.  There was no sign, rhyme or reason for this…. It is hard to detect early and many times takes the lives of these beautiful children.  Read her blog to learn more.  Thank you again.
~From a best friends prospective; Bethannah Guzman