Day -4

I swear that time is not a constant in the hospital.  It either goes very, very slow...when you are waiting for chemo to start, or waiting to get the heck out of here.  Or it goes very, very fast and before you know it, it's 9pm and you have had a shower or dinner yet.  Today was definitely a time suck day.  Though, I do know where our time went today.  We were very busy.

Nate continues to do well.  His eating seems to have slowed down a bit, but he is still eating.  I spend a lot of the day running back and forth between our room and the family lounge (where there is a fridge and microwave) making and getting food for Nate.  He can't decide exactly what he wants most of the time.  He is still throwing up at the thought of medication, but then, gets right on with his day.  They've gotten rid of some of his yucky medicines, but as long as his tummy is still wonky, as soon as he sees those syringes...he turns green.  Still, I am very happy with his level of nausea because he is only throwing up a couple times a day and it isn't slowing him down at all.

We moved rooms today.  Some rooms have benches to sleep on and some have chairs that lay flat.  We far prefer the "bench rooms".  The bench is much more comfortable to sleep on and it is right by the window and provides a nice place to have Nate walk over to during the day to sit and play.  I requested a switch to a bench room if possible, when we got here, and one became available today.  This room rocks!  Really, it's the little things that get me excited.  It's quite a bit bigger and just a whole lot more comfortable.  We are going to be here awhile...we might as well get comfortable.  It was a bit of a process to move over (we are going to need a U-Haul to move out of here when this is over), but we are all settled in now.

Today was also "Nate's day" in the play room.  They have a play room on this end of the 7th floor for the bone marrow transplant kids.  Normally, the kids are allowed to play in there as long as their ANC is above 250...they also used to be allowed to wander the hall.  This is not the case right now because it is RSV and flu season.  Apparently, last season they had a flu that got on to the floor and almost killed a couple kids, so all the kids have to stay in their room, no matter what their ANC is.  They have decided to let the kids have access to the play room one day at a time and it gets cleaned in between each kid.  Today was Nate's day.  Unfortunately, we didn't get confirmation that he could go to the play room until the afternoon, when most of the day was over.  Nate was a good boy and wore his mask to walk to the play room...something he NEVER does.  Really, the play room was nothing to write home about.  A few toys, but not as much fun as the main play room.  It was just nice to get out of the room for a bit.

I also spent a great deal of the day talking to the doctor, nurses and pharmacist about a medication error.  Two of Nate's chemo drugs are 24 hour infusions.  They were hung yesterday afternoon at about noon and because of a tubing change, started infusing about 2:30pm.  Which means the infusions should end at 2:30pm today and the bags would be switched.  Last night, about midnight, one of the bags went dry...all the medication had been infused.  I didn't know anything about any of this until this morning, but apparently last night everyone was called at home and trying to figure out what happened.  All of the nurses checks and balances were done.  All of pharmacies checks and balances were done.  We sit here and watch the nurses check themselves when hanging the chemo, making sure to double check the patient, the drug and the infusion rate.  I asked to pharmacist to come up and talk to me about their checks.  The pharmacist spent a lot of time going over their whole process.  Everything checks out.  So, what happened?  We don't know.  It will probably always remain a mystery.  Was Nate given the medication too quickly?  Honestly, this would be the best scenario because this chemo can be given faster and would probably cause no harm.  Was he given the correct medication?  Everything from pharmacy says that he was.  The only conclusion they can come to, is that it was a faulty pump...the same pump that gave the meds correctly the previous two days.  Unfortunately, a faulty pump is not very likely...but, there is no other explanation.  I am choosing to give this to God.  Everyone involved has gone over this again and again.  There is nothing more that can be done.  I am praying for protection for my boy.  Protection from the poison we know is going in to his body at the correct rate and protection from the unknown that happened yesterday.

At about 2:30pm tomorrow...a little over 15 hours from now...Nate's chemo will end...FOREVER!!  That's right!  Nate will not have any more chemo...God willing...EVER!!  We still have so far to go, but I am grateful to have that part of this journey behind us.  I am excited to see his hair again.  Nate has been off chemo so long (clearing up the blood infection) that peach fuzz has started to grow all over his head.  He also has a bit of eyebrows and beautiful lashes coming in.  Unfortunately, this will all fall our in another week...but, it is a beautiful glimpse of what we will get to see in the next couple months.

Day -6 and -5

Daddy took the weekend shift, so that he could spend some time with Nate and I could give Wes and Ellie some Mommy time.  It did dawn on me yesterday, though, Chris and I will not get to see eachother (other than a couple minutes in passing) for as long as Nate is in the hospital...4 to 6 weeks.  That's a long time to go without hanging out with my best friend.

Nate had a fun weekend with Daddy.  He is still doing great.  Lots of energy and eating...lots of playing.  He didn't start throwing up until Saturday.  Three times on Saturday, two times today.  All related to medicine taking or mouth care.  He has such a strong gag reflex and when he's on chemo, he just doesn't tolerate anything yucky in his mouth.  Unfortunately, all the medicines he takes (9 doses right now) are yucky and the mouth care he has to do 4 times a day is also yucky.  So, we get the bucket and cross our fingers.

His other least favorite time of the day is shower time.  It is important to keep his skin clean and healthy through this process, because it is another site of possible infection.  Nate is just not a big fan because we have to put tape over his dressing, which means we have to take the tape off...ouch!  Also, Nate does not tolerate being cold AT ALL right now because he is so thin.  So, we do his shower right before bed and he's pretty worn out and ready for sleep afterwards.

That's pretty much all I know right now.  Nate is snoozing and tomorrow will be his last day of chemo.  Here are a few pictures of Nate's fun weekend with Daddy.

Day -7

So, today was the day.  Chemo started at about 11am.  It started with a 30 minute infusion of a drug called Melphalan.  Common side effects (21-100% of patients): nausea, vomiting, loss of appetite, increased risk of infection, need for blood and platelet transfusions, mouth sores, hair loss and diarrhea.  Occasional side effects (5-20% of patients):  weakness, weight loss and inability to have children.  Rare side effects (1-4% of patients):  Low blood pressure, excessive perspiration, allergic reaction, a new cancer or leukemia resulting from this treatment, and damage/scarring of lung tissue.  Nate will get Melphalan on days -7, -6, and -5.

Then Carboplatin and Etoposide began as a 24 hour infusion that will be given throughout days -7, -6, -5, and -4.  Common side effects of these two drugs: nausea, vomiting, loss of appetite, increased risk of infection, need for blood and platelet transfusions, and inability to have children.  Occasional side effects: abnormal hormone function affecting levels of salt in the blood and urine, causing too much or too little urine, decreased blood pressure during the infusion, hair loss, and diarrhea.  Rare side effects:  metallic taste, numbness, tingling, clumsiness, damage to the liver, damage to kidney tissue, damage to the ear causing hearing and balance problems, mouth sores and a new cancer or leukemia resulting from this treatment.

Fun stuff, huh?  Not anything I ever thought I'd consent to giving my child.  Eight months ago, I hesitated even giving Tylenol unless he really needed it.

Nate handled the poison like a champ today, though.  He played and ate, all day long.  He was up out of bed, wandering around, pushing his IV pole (that was dripping poison into his veins) looking to "do something fun" and searching for snacks.  He played with a beach ball, bowled, drove cars around a painter's tape race track, did puzzles, watched movies, ate tons of snacks and rode the Smart Cycle video game...all without leaving the room.  Nate was a ball of energy all day long and continues to eat well.  So far, no sign of nausea or vomiting...which will be the first side effect that we will see.  Nate is getting IV anti-nausea medication around the clock every 3 hours, with 2 more meds available if he needs them.  I'm praying that this regimen can keep the nausea and vomiting to a minimum.

Nate did ask to go home...specifically to go to Chuck E. Cheese with Daddy...or to at least go to the play room or out in to the hall.  He can not go any of these places.  He was disappointed, but understood and accepted it.  Other than that, Nate and I had a really fun day, then Papa came to relieve me in the afternoon, so I could take Wes to his first baseball practice of the season. 


Sometimes I don't know something is going to be difficult until I'm in the middle of it.  Taking Wes to his baseball practice was hard.  The first thing that really struck me, is that I find it really difficult to be around a group of "normal" moms, especially ones that don't know about Nate.  It makes me sick to think that someone would look at me with Wes and Ellie and think that I am a mother of two.  I feel like I need to walk around with a shirt on that says, "I have 3 children, Wes is 5, Nate is 3, and Ellie is 1...Nate is in the hospital, bravely battling cancer".  It is also very difficult to listen to the "typical Mommy conversation".  "Joey walked at 15 months, but Susie walked at 9 months.  I have a roast in the crock pot.  We're remodeling our kitchen."  These thing used to important to me too.  I even try to pretend to engage in this "normal" conversation from time to time.  What do I really have to add to these conversations now anyways?  It just feels so empty now.  Will I always feel this way? 

Then, about 15 minutes in to Wes's practice, it hit me.  Nate is not here.  I started sobbing and had a hard time containing myself.  Nate LOVED going to Wesley's practices and games last season.  Nate actually thought that HE was playing baseball on the team as well.  He would always ask to go to "my baseball game".  I would bring his Little Tykes baseball tee, bat, balls and glove, and he would have a grand time running around and playing with the other brothers and sisters.  At the end of the season, I was given a trophy for being team mom and I gave it to Nate...he truly earned it for being their honorary player and number one fan.  When I left the hospital today, I didn't tell Nate where I was going because I knew it would break his heart.  I just didn't know that it would break mine to be there without him.  Then my mom pointed out that he may be missing this season...but, next year, he will wear a uniform.  Then, I REALLY started to sob.  I CAN NOT wait for that day...talk about sobbing!  Now, I'm the crazy mom who doesn't engage in "normal Mommy talk"...AND I cry at baseball practice.  Yep...that's me.

Stem Cell Transplant: Day -8

Today has been a pretty good day.  Grandma, Nate, Ellie and I met Liz, Lily, Jen and the kids at Chuck E. Cheese for some lunch and fun.  Nate is just doing so well!  He doesn't tire as easily, he was running around playing everything and even climbed up in to a monster truck a couple times by himself.  He also ate almost 3 pieces of pizza!  It was a perfect send off.

We dropped Ellie off at Liz's, said goodbye to Grandma and headed over to the hospital.  He was tired and cranky in admitting and was asking (ok...screaming) to go up to his room, so he could take a nap.  As soon as we got in his room, he started making himself at home.  He hung his Valentine's Day window clings up, unpacked his bag of snacks and carefully arranged them on the shelf.  Child life brought in a pile of new toys for him and he started searching for places to put them in the room.  He was taken downstairs for a baseline chest x-ray and by the time we got back up to the room, his need for a nap apparently disappeared.  He spent the rest of the afternoon playing with his new toys and eating snacks.  He kept climbing in and out of the bed and wandering around the room to get himself things.  This was awesome for me to watch because normally, no matter how good or bad he is feeling, he is perfectly happy to park his butt in bed and bark orders.  He almost never gets out of bed without someone making him, so I hope we can keep up the activity as long as he is feeling up to it.

He fell asleep right before the nurse was able to come in to do his dressing change and had to be woken up for it. Dressing changes are no fun...being woken out of a dead sleep for a dressing change, is a real bummer. He did awesome as always (with a little screaming and crying) and was then hooked up to some fluids and heparin (a blood thinner that will help prevent liver problems that are associated with this chemo). He also received 4 yucky medicines and took them like a champ. The chemo drugs will start in the morning.

So...what exactly is a stem cell tranplant?

First, high-dose chemo is given to destroy any remaining cancer cells in the patient's body.  Then, stem cells from the child, previously collected, are given back through the central line to allow their bone marrow to recover from the side effects of the chemo.

High dose chemo, in addition to destroying the child's neuroblastoma, will also destroy normal marrow.  This will result in low blood counts that will increase the risk of infection or bleeding during the first 2-3 weeks (or longer) and could lead to death.  During this time the child will stay in an isolated room with special care attempted at reducing the chance of infection.  The child will need IV fluids and feeding, medication for infection, and transfusions.  The doctors will try to prevent or correct any medical problem along the way.  After marrow function is recovered, the likelihood of developing an infection or bleeding is decreased but will continue as a risk for several months.  If the transplant proceeds as expected, the child will spend 3-5 weeks in the hospital.  It may be necessary to spend a longer time in the hospital if complications occur.

Nate will receive high dose chemo on days -7, -6, -5, and -4.  Days -3, -2 and -1 are considered "rest days", where he doesn't receive chemo drugs but will continue to receive supportive therapy as his body starts to decline.  On day 0, he will have his stem cells infused.  I've been told that the actual infusion of the stem cells is pretty anti-climactic.  There is a chance for a reaction, so the doctor will be in the room during the infusion, but it doesn't take very long and most children handle it fine.  We've also been told that the preservative they use to pack the stem cells, smells awful.  It's been described as smelling like creamed corn and apparently Nate may smell like it for several days...yum!  The stem cells take about 10 days to graft, or "take" and Nate will be feeling his worst probably around day +4 or +5.

I like to think of the stem cell transplant process as similar to Nate's worst round of chemo...maybe, plus some.  He would be in the hospital for 5 days getting chemo, come home for 5 or 6 days, all the while declining.  Then, he would get a fever and end up back in the hospital.  The worst round had him in the hospital for 12 days, battling fevers, mouth sores, vomiting and diarrhea.  This will be very similar, the only difference is that he won't come home for the 5 or 6 days in between.  This time, he will also get his stem cells back to help his body recover, rather than sitting around waiting for it to recover on it's own.  The other advantage is that he will be able to get IV anti-nausea medication around the clock while we are here.  Nate's vomiting always was worse at home when we had to rely on oral anti-nausea meds.  I am optimistic that his vomiting will not be too bad and that his stem cells will help him bounce back faster than ever.

I think that's enough information for one day.  I'll spread the love over the next couple days and go over the chemo drugs he will be receiving.  If any of this bores you...feel free to skip to the cute pictures.  This blog is as much a way to keep everyone up to date as it is a record for myself and for Nate one day, if he's interested.  Some time yesterday, this blog surpassed 100,000 hits!  That is pretty amazing to me.  There are actually people all over the world reading about Nate and praying for him!

Thank you for following his story, spreading awareness and praying for Nate and all the other babies battling this horrible disease.

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.

46/7

Today is World Cancer Day, a day for the world to unite in the fight against cancer by raising awareness, educating the public and lobbying for change.  No one needs this more than the littlest fighters who can't speak up for themselves.  I wanted to share this beautiful video that a mom to a fellow little fighter made...keep an eye out for Nate.  Do you know what 46/7 means?  It means that every single day 46 parents hear the words "Your child has cancer", and every single day 7 of those children lose their fight.  These babies need us.

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.