Day +10, +11, +12 and +13

 First, I want to apologize for the lack of updates.  I don't mean to worry anyone.  I am tired...mentally, physically and emotionally.  Sometimes at the end of the day I just don't have the energy to recount the day's events.  We are all still good...just tired.  Nate's been in the hospital for 3 weeks now and we are all just more than ready to go home and all be together.

This week has been good...and frustrating.  Nate started off the week in the OR to have his broviac (central line) removed and replaced.  Our favorite surgeon (Nate's only surgeon here at PCH) removed the month old broviac and placed a new one in the same spot that his original one was located.  He did this to minimize the number of scars he has, which we appreciate, not to mention that we far prefer it's location in the middle of his chest to when it was off to the side.

Nate has been getting better and stronger every day.  His ANC has been skyrocketing, day 10: 3162, day 11: 8127...stopped G-CSF shots (to increase WBC)...day 12: 10,920, day 13: 8512.  Basically, this means that his cells are fully engrafted and his immune system is starting to work and heal his little body.  The only problem is that he keeps getting fevers.  Normally, the fevers stop when engraftment occurs.  This hasn't happened for Nate.  Nate engrafted a few days earlier than most kids (we knew he had super cells!), so one possibility is that his engraftment occurred early but the benign fevers are hanging around the "normal" amount of time.  The other possibility is that he has some infection hiding somewhere that is not showing up in cultures or being treated by the multitude of antibiotics he is on.  While we hope and pray that the fevers are due to the first possibility, we have to assume that they are actually due to the second possibility.  We can't take any chances, because if there is a hiding infection somewhere, it could literally kill him if left untreated.  So, this week has been full of antibiotic changes and additions and cultures and tests too look for and treat any possible infection.  If his fevers continue (his last one was at 6am this morning), they will do a head to toe CT scan this weekend to rule out anything hiding.  I'm really praying that we have seen the last of these fevers.

Other than that, Nate is doing spectacular.  He has some energy back and is willing to get up and play a little.  We played baseball this morning, he rearranged his floor, alphabet puzzle a bit and we looked out the window with binoculars.  He tires out pretty quickly and is sleeping it off now, but it's so nice to see him actually want to get up and play, even if he is wobbly.  Man, we had SUCH a rough December and January.  I was so fearful that we were headed right back there after this transplant.  I am so grateful to already see him so far ahead of where he was then.  He is not eating yet, but is drinking a decent amount of water.  He keeps asking for food, but everything tastes "yucky" to him because the mucositis destroyed his taste buds.  We keep telling him that his "tasters" are broken but they will heal up soon.  He is still getting nutrition by IV (TPN) and will probably go home on TPN and IV fluids for a while, until his "tasters" and stomach heal and until his kidneys are more out of the woods and he can get by with more normal (drinkable) amount of fluids...his fluid requirement right now is over 40 ounces a day.  Really, the fever is the only thing keeping him here.  As soon as that stops, they can start taking away antibiotics and we can go home.  We had hoped for Sunday or Monday...but, that doesn't really seem feasible now.  We will just have to wait and see when these fevers stop.  I'm still hoping for next week.

I'm going to get to work on the house this weekend.  Nate now has the same immune system as a newborn baby (all his immunizations have even been wiped out).  We have to make sure that everything is exceptionally clean for him, he has a special diet (including no restaurant food), and he can not be around big crowds for several months (about day +100), especially with the coughs and colds that are going around right now.  We would love, love, love play dates and visitors as we are home bound for the next couple months.  Please just be careful and don't come over if you think you or your children may have a scratchy throat or a sniffly nose.  Also, flu shots are a must until flu season is over (sometime in April or May)...and you can still get one if you didn't and would like to.

Getting the house prepared is no small feat, considering I'm not there to do anything.  Thank God for all our helpers!  Papa was there this morning to let the carpet and upholstery cleaners in.  My mom will pick up the dogs from the groomers for me tomorrow and will keep them at her house until we can get the dog doors installed.  The sweet lady that has been cleaning our house every couple weeks, changed her schedule around to come do a deep clean on Saturday, in case Nate can come home on Sunday or Monday.  I will work on more clutter over the weekend, take down and wash the drapes, replace the shower curtains, wash the front room couch cover and see what I can do about our moldy washing machine gasket (I hate our front loading washer)...the internet suggests bleach and a toothbrush, but I'm open to suggestions.  Whatever it takes!  We want our boy home.

Day +7, +8, and +9

 We've had a crazy, busy, whirlwind weekend.  Thursday, Nate's blood work showed 6 cells and Friday there were 25 (no neutrophils yet...so, no ANC), and his white blood cell count had gone from 0.1 to 0.3.  Still a long way to go...but we were so excited to see movement.  Nate was still fighting fevers but they were further apart and the temperatures were lower.  I also got Nate up and playing and walking around a bit on Friday. I left the hospital on Friday evening, with Nate in Lou Lou's loving care, to get home in time to take Wes to see the school play.  Three of Wes's neighborhood, bestest friends, were in the play (they are in 4th and 6th grade) and it was really fun.  All the kids did a great job!  Then, I met my friend for a late movie and got to sleep in the same bed as my husband!  This was all just on Friday night!

Saturday, Lou Lou and Papa took care of Nate and Grandma and Linde took care of Wes and Ellie, while Chris and I took a little time off to do one of our favorite things...race!  We competed in The Great Urban Race (which benefits The Ronald McDonald House and St. Jude's...by the way), which is part 5K, part scavenger hunt where you have to run around the city, solve clues and compete in challenges.  It's like a mini Amazing Race, and we love it!  Our team name was Super Nate, of course, and we wore our Super Nate shirts and our capes the whole race.  I even ate a scorpion...really, after the last 7 months, I certainly am not afraid of a little scorpion.  We finished 21st out of almost 400 teams and the top 25 qualify for the National Championship race in Vegas in November.  Who knows if we will be able to go, with Nate's treatment schedule, but we are certainly going to try.  Of course, Chris and I can't actually have a couple hours break from being cancer parents.  I was literally running down Scottsdale Road (in between balancing a beer on my head and eating a scorpion) talking to Nate's doctor about his central line being blocked...now, that's multitasking!  Turns out, that some time on Saturday morning, Nate's line stopped working.  They did some tests and found out that it has a small hole in it and is not fixable.  They had to put him under anesthesia Saturday evening and place a temporary PICC line in his arm.  Tomorrow morning at 9am, he will go back in to the OR to get his permanent line removed and a new one placed...the line that he JUST had placed a little over a month ago.  Ugh...always something.  We did get the good news from Lou Lou on Saturday morning that Nate's ANC was 75!  Woohoo!  An actual ANC...things are happening!  Go, cells go!

This morning, first thing, I got great news from Chris.  Nate's ANC jumped up to 840 and his fevers have slowed quite a bit!  Spectacular!  They consider his cells to be engrafted when he has 3 consecutive days of ANC above 500.  We are on our way!  He has several other things he must do before he can go home...such as, taking all medication by mouth and be able to go a couple days without a platelet transfusion...but, we are looking at possible discharge maybe next weekend.  I'm trying not to get too excited...but I'm excited!  I'll take 3 weeks in the hospital over 6, any day.  We started off our day, today, with a balloon release in honor of RJ.  His family had his services today and asked anyone who could not attend, to release a balloon in his honor.  It's the least we could do.  My sweet friend, Jen, her husband and kids blew up over 20 balloons this morning and we attached cards I made with some of RJ's information.  We hope to spread a little awareness where ever those balloons end up...RJ where show them where to go.  One of them hit a tree in the park and dropped it's card right in front of a woman walking her dog, which gave me the opportunity to talk to her about RJ, Nate and neuroblastoma.  See RJ, you're making a difference already.  It was sweet and emotional.

After the balloon release, we headed out to Mesa for my sweet nephew's baptism.  It was a really nice ceremony and a fun party with great people.  I am really so, so proud of my brother and my sister-in-law and I sure do love that little boy!  This evening, after a trip to Costco to get Wes some muffins he has been asking about for weeks (poor kid...I don't get to the store much these days), I headed back to the hospital.  Daddy, Nate and Softie were hanging out watching shows and watching Nate get stronger and stronger.  This week should be challenging and exciting as we work to get Nate the heck out of here and back home with our family where he belongs.

The pastor of our church posted this quote on Facebook earlier this week, "God never promised the perfection of heaven in our earthly existence, but because of his love and grace, He will bring blessing out of trials."  Man...aint that the truth.  There are a lot of things that suck about our life right now.  It is not fun to have our family constantly separated, to watch Nate suffer, to not be able to care for my family in the simplest ways that I used to enjoy so much....but, wow!  Look at our blessings!  Three beautiful children, a strong, fun marriage, a family and extended family whose love and support of us is unparralled, new and old friends and aquantainces who have come out of the woodwork to help our family, solid careers at amazingly supportive companies, and so much more than I could ever list here.  It would be easy to get down in the dumps about our situation...and believe me I do (though, I guess you all already know that), but I am trying EVERY DAY to focus on the blessings that God has bestowed on us.  Even in this most awful trial, the blessings still far outweigh the hardships...how is that even possible?!  Only through God, I suppose.

No More Bugs!

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

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

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

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

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

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

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

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

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

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

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

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.



Beautiful Words

I just heard Nate's oncologist say the words, "Nate is surgically CANCER FREE".  Now, we are not fooling ourselves.  The hardest part of Nate's fight is still to come, but we will REJOICE in these victories along the way.  The results from the surgical biopsies have come back.  The tumor from Nate's liver had clear margins, which means that the surgeon got it all!  He took 6 lymph nodes, one that was right next to the tumor and the 2 next to that one tested positive for neuroblastoma.  The 3 lymph nodes around those, came up negative.  These means that the lymph nosed essentially have clear margins as well.  All this adds up to the fact that Nate has NO DETECTABLE CANCER IN HIS BODY!!!!

That does not mean that it is not possible that there are microscopic bits of neuroblastoma hiding in Nate's body that can not be picked up by the current technology.  One neuroblastoma cell is too many.  That is why Nate must continue to fight and complete the rest of these terrible treatments.  We have faith and we BELIEVE that these treatments will do what they are supposed to do and Nate will continue to be CANCER FREE!!!



You Just Have to Laugh...Right?!

Nate woke up this morning and immediately asked for a cookie.  He had a few bites of cookie and some milk for breakfast and that was about it, then we headed to the clinic.  Nate had blood taken, was examined, and I told them what had gone on over the weekend.  Nate's oncologist thought the vomiting was most likely due to the fact that he recently had such a major surgery.  I guess, "motility issues" are not uncommon.  All Nate's numbers came back great and he was cleared to start chemo.

I decided to take Nate to Target to pick out whatever he wanted to decorate his hospital room.  I also thought a little "non-hospital" lunch might encourage him to eat something.  Liz was out running errands with Jack and Lucy and met us at Target for a little shopping and lunch in the food court.  Nate picked out a silver tinsel tree, we got brightly colored lights and ornaments to hang from it and a red (Nate's favorite color) bow for the top.  We also picked up another set of lights, a mini stocking (and some candy to go inside), some gel window clings and an LED snowflake that changes colors.  I then took Nate down every food aisle and bought everything that he pointed at.  We ended up with breakfast bars, pretzel sandwiches, hot dogs, mac and cheese, yogurt, and cheese.  He never eats very well in the hospital, so I want to have lots of options for him if he feels like eating.  We headed to the food court and Nate ate one bite of an apple (because I begged him) and drank some juice.

Nate and I then headed to the hospital for Nate to be admitted.  Nate fell asleep in the stroller and I transferred him to the bed when we got upstairs.  He had a nice nap and when he woke up, we decorated his room.  We ended up switching rooms (they were nice enough to let us switch to a room with a bench, which is so much better than the chair to sleep on) and I decorated a second time...what else do I have to do.  Nate did end up throwing up this afternoon, and still won't eat anything...really, anything.

Fluids were started and not surprisingly, one round of hydration wasn't enough to start chemo.  They have to make sure his urine is really dilute and fluid is running right through him so that the chemo doesn't sit in his bladder and do damage.  So, he's on his second round of hydration and hopefully it will do the trick, so he can start chemo around midnight.  On another note, I mentioned that Nate had a kidney test when we were in New York to see if chemo had done damage to his kidneys (one of the major side effects).  The test showed no damage!  Thank you God!  Normal GFR (kidney filtration rate) for his age is 70 and Nate's was above 100!  Go Super Nate!

This evening I got a call from Daddy...Ellie is throwing up all over the place.  So, apparently this is a bug...not surgery related.  Something Nate picked up in New York or on the way home and passed on to Ellie.  I had the nurse call the on call doctor to make sure it is still safe to start chemo, and it is.  Ellie was supposed to go to Liz's house tomorrow, but we don't want to purposely expose their family to this bug.  Our wonderful family comes to the rescue again and the Grandparents will switch off taking care of Nate tomorrow, so I can go home and take care of my baby girl.  Please pray that Nate wakes up feeling like a million bucks tomorrow and starts eating...a lot.  Also, please pray that Ellie recovers from this thing quickly and the rest of our family is spared.  Honestly, a stomach bug seems like such a small problem right now, though I'm sure Chris isn't feeling that way as he takes care of our vomiting baby by himself.  Thank you, everyone, for your support, love, thoughts and prayers.



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.

Post-op Day 3

Another great day for the Nater tot! The chest tube was taken out this morning, so no more extra tubes! Lots more walking with less complaint. Though, they stopped his pain pump and switched to oral meds which made his evening walk a little more painful. All steps to getting discharged. Lots more playing in the play room and a little bit of eating. He doesn't have a huge appetite yet, but he's working on it.

Tomorrow, he's going to have a kidney test done that was requested by our oncologist to be done between round 5 and 6. We tried to get it done before leaving for NYC, but with an irritating radiology scheduling department and the Thanksgiving holiday, it wasn't scheduled. So, while they'll have to put an IV in, and he won't be happy about it, we will be glad to get it out of the way and not have to spend another whole day at the hospital to do the test when we get home.

Hopefully, Nate will be able to be released from the hospital on Wednesday and on a plane home by the end of the week. The only hang up is a fever that he keeps spiking at night. He did it last night and again tonight. All his blood cultures, so far, are negative. We aren't sure where the fever is coming from. The nurse practioner said we aren't worried about it but it is "of note". If he keeps spiking though, they probably will not release him. Please send prayers that he is now done with these fevers.

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!

The Meetings

Our beautiful boy, watching TV, waiting for surgery.

Nate was taken back for surgery at 11:30am.  He was not able to have anything to eat or drink from midnight last night on...so, none of us had breakfast this morning.  Needless to say, we were all getting a little cranky as the time was wearing on.  We just got our first update at 2pm and they said that Nate is doing well.  The resection is under way and the doctor got started at 12:35pm.

On Wednesday, we had our meeting with the surgeon and one of the doctors from the Neuroblastoma team here at MSKCC.  Nate was being a crazy goof while we met with both doctors, but we wouldn't want it any other way.  They surgeon sat down and looked at Nate's CT scans and reviewed his history with us.  He said on a 1-10 scale of difficulty for the Neuroblastoma that he sees here (he sees some of the most challenging cases in the country), Nate is about a 2.  He said he gave it this difficulty rating only because he has to shave off part of Nate's liver and there is a risk of bleeding.  He also talked about making sure there is no part of his adrenal gland (where the tumor originated) left.  If there is, he will remove it.  The surgeon also said that he will look at all of Nate's lymph nodes in the area and if any of them look diseased (apparently, they look different), he will remove those also.

We were given the low down on what to expect after surgery.  Most of which we already knew, because Nate has been through this once before.  Basically, he may come out of the OR on a breathing tube and ventilator.  If this is the case he will have to go the the PICU (pediatric ICU), which is across the street at New York Presbyterian Hospital.  If he is able to come out of the OR breathing on his own (which he was, after his first surgery), he will stay here at MSKCC.  We are REALLY hoping and praying for him to come off the ventilator in the OR.  It's very normal and expected if he still needs the breathing tube, but I am not looking forward to seeing my baby sedated on a breathing machine.  Nate is our champ and we think he can do it!  He will have a chest tube to drain fluids, another (temporary) central line and an arterial line (which he pulled out the last time!).  We really don't know how soon Nate will get to come home.  It all depends on him and his ability to heal.  He did really well last time, so we are hoping for the best.  Most likely it will be anywhere from 5 to 10 days (we were told 7 to 10 by the surgeon, but have been told as short as 5 by the oncologists).  We just have to wait and see.

Chris and I both came out of the meeting with the surgeon with the impression that he didn't understand why we were here...why we had traveled across the country to have this "2 difficulty" tumor removed.  Strangely, this makes me feel good.  We know exactly why we are here.  We are here because Nate is our son and we would do anything for him.  Nate was lucky enough to have most of this tumor removed already in Phoenix, but the key word is MOST.  We want to make sure that ALL of the tumor is removed this time and who better to do that than the best Neuroblastoma surgeon in the nation (maybe the world).  No one in Phoenix ever said anything about Nate's lymph nodes.  The surgeon here is very thorough and that is what Nate needs.  Studies have shown that surgically removing the tumor, all of the tumor, is an important component to curing Neuroblastoma patients.  We have worked hard and are fortunate enough, with the help of so many awesome people and great organizations, to be able to bring Nate here...that is why we are here.

One other bit of information we got from the surgeon, was about the "spillage" that Nate experienced when his tumor ruptured as he jumped on our ottoman.  I off-handedly mentioned this to the surgeon as we were talking about Nate's history and he said that they have found in Neuroblastoma that "spillage" does not matter.  In some tumors, it is an issue, but not in Neuroblastoma.  This was awesome news to me.  Not that it makes a ton of difference, but when they kept talking about spillage at the beginning, my mom brain was running wild with mind pictures of nasty little cancer cells running wild on his insides.  I kept wishing we could have some how found this tumor, fairly early like we did, without the rupture.  All coulda, shoulda, woulda...but still puts my mind at ease a bit, and I'll take all I can get at this point.

We then met with one of the oncologists on the Neuroblastoma team to discuss Nate's 6th round of chemo and the antibody therapy they do here, versus the one they do at PCH.  It is still up in the air as to if Nate will receive his 6th round of chemo here in NY or at home.  It will all depend on how long it takes him to recover from surgery.  We will make the decision as the days go on.  If he is able to come home quickly, he will do the 6th round at home.  If his recovery here in NY is extended, he will probably receive the 6th round here.  Chris and I will make the decision in the next few days.  I drilled the oncologist pretty good about the antibody treatment and we got all of our questions answered.  I will explain more about it, once we have made some decisions as it gets closer.  It was just nice to talk to a doctor here, face to face, and get the information we need to make decisions for Nate's care.  We will drill the oncologists in Phoenix and make some decisions...we know which way we are leaning right now, so that feels good.

I'm typing this as we wait for Nate to get out of surgery.  We went to lunch with some great friends and have had some good distractions.  Chris is mastering Angry Birds.  I think I'm going to make a game called Angry Moms (and Dads), where we can launch bombs at cancer...in real life.  Well, I guess that's what we are all doing every day.  Surgery, chemo, radiation, etc.  These are the only bombs we have right now.  I just wish our babies weren't standing in the way.

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".

New York, New York

I've been trying all night to upload pictures of Nate's early birthday party for a fun post, but I'm having no luck because the internet connection is so slow here.  So, I'll save that post for another day.

We arrived in New York, yesterday evening after a pretty uneventful plane flight (uneventful plane flights are a good thing).  We were picked up by a car service, courtesy of The Corporate Angel Network, another amazing organization that we have come to know through this journey.  Unfortunately, they were unable to locate a corporate flight for us but helped me change our 7 1/2 hour long flight with two stops to a 4 1/2 flight with no stops.  We flew into a different airport that was further away, so they offered to have a car service pick us up.  I didn't even know this was an option.  Really, all of these organizations are amazing!

Speaking of amazing organizations, The Ronald McDonald House here is incredible!  It is just like a hotel, but better, in my opinion.  We have a hotel sized room with two twin beds, a pull out couch and a private bathroom.  The house has a giant play room, a dining area that has several different, shared, fully stocked (plates, pots, utensils, etc.), gourmet style, kitchens and a beautiful family room area.  We have a mail box, a cabinet in our kitchen and a giant bin in the refrigerator and freezer to keep food.  They frequently have meals brought in from generous, outside groups.  The whole house is being beautifully decorated for Christmas and Nate was handed 2 new toys within seconds of walking in the door (we've been warned that at this time of year the kids can get a little spoiled, because lots of toys are brought in from outside organizations).  We are a short walking distance from the hospital, but the RMH also has a shuttle to the hospital available.

When we were given the tour, I held it together through the whole thing, but started bawling as soon as we got back to our room.  It's just so nice here!  In college I used to take collected pop can tops to The Ronald McDonald House in Tucson and one time I helped clean up after a family meal.  I remember pitying the families.  It was so sad to me that all those families had a sick child and had to be away from their home to get care for their child.  Are we really that family now?  I guess we are...and I'm so grateful to have the opportunity to travel with our son, to the best surgeon in the nation, and to have such a beautiful place to stay.

After our tour, some lovely friends picked us up and took us for a delicious BBQ dinner. Nate was a pretty good boy at dinner, but got a little wiggly at the end, so we headed home to get some sleep. We spent all day today at the hospital meeting with doctors...but that's a post for tomorrow because I need to get to bed. Goodnight from New York. I promise to write all about our meetings, tomorrow.

Scan Day

Nate had a CT scan today to assess his tumor prior to surgery. Usually scans make me into a giant stress ball, but I was really not too worried about this one. It wasn't the full battery of tests, so he didn't have to be put under anesthesia, and we pretty much knew what the scan would show us.

As the scan approached, I actually started to get more worried about getting Nate to lie completely still for the scan, than I was about the scan results. We went to clinic bright and early for a blood check. All his numbers were good. He is making his own platelets again, so he doesn't have to rely on transfusions, for now, woohoo! Then, we headed over to "Nate's big hospital" for the scan. Softie got a CT scan first in the play CT machine. There are so many of these cool things out there for kids with cancer and their siblings. I have mixed feelings about these things. First, they are SO cool and totally invaluable tools to help these kids through this fight. On the other hand...how messed up is it that there has to be a toy CT machine, and books and cartoons about kids with cancer?!?! Kids should not have to be dealing with this! But they are...so, we are grateful for the play CT machine. Softie held very still, like a good boy, for his scan that Dr. Nate gave him. Then Nate held very still, like a good boy, for his scan too. We were out of there and on our way home for fun, by 10:30am!

Nate is 2...almost 3, and they really try to push putting him under anesthesia for these scans when you schedule them. I had to fight with the lady on the phone and insist that it was a short scan and I knew he could...and would hold still for it. There was NO WAY I was going to let them put him under. He did great and there was no risk of anesthesia or waking up a groggy boy afterwards. He just hopped off the table and we went on with our day.

I got a call from the doctor this evening with the exact results we were expecting. The remaining tumor that is on the edge of his liver has shrunk, a little, but still needs to be taken out...as expected. Everything else looks good. So, off to New York we go. We leave next Tuesday, 11/29 for an appointment on 11/30. Nate's surgery is then scheduled on 12/5. We are so, so thankful that it looks like we will have a Happy Thanksgiving with family and NOT in the hospital!

Nate's Blood and My Gut

I published the last post and started to head to bed when I heard a panicked, "Mommy!" coming from Nate's room. I ran down the hall, not sure what I would find, to see my sweet, little boy standing at his doorway in his one piece monster sleeper jammies and blood covering his entire face. I yelled for Chris and grabbed a baby wipe to squeeze his nose as I saw that there were several pools of blood on his pillow and bed. Chris and I took turns squeezing and cleaning. These nose bleeds are truly one of the things I hate most about this treatment...because Nate hates them too. He screams, hits, kicks, cries and begs us to stop the entire time were squeezing his nose. Some nose bleeds stop quicker than others. So, I usually start off with a 2 minute hold, then go to a 5 minute, then a 10 minute if the previous two don't work. If the 10 minute hold doesn't work, we're supposed to call the doctor and probably bring him in. It was 3am and we knew if we had to bring him to the ER, we would both have to go (one to drive and one to hold his nose) and we would have to call someone to sit with Wes and Ellie. So, I think we tried a couple 10 minute holds before we gave up and called the on call doctor. She said to try holding an ice pack to his nose while squeezing it, but if it didn't stop in the next few minutes, to go to the ER to be admitted for platelets. We had an appointment at the clinic for platelets in less than 7 hours...we just had to get this thing to stop for 7 hours. We finally, after about an hour and a half from start to finish, got it to stop and tucked Nate into his freshly cleaned bed. Literally 3 minutes later, just as I was sitting down on my bed, we heard a giant sneeze come from Nate's room. I booked it down the hall again to find Nate with a GIANT blood clot on his face. He said, "Mommy, I sneezed a strawberry!". I sat him up and the blood started flowing again. We decided to squeeze his nose with an ice pack for another 10 minutes and if it didn't work to call my mom to sit with Wes an Ellie so we could head to the ER. It didn't stop.

Chris and I took turns squeezing and getting dressed and ready to go while we waited for my mom. I was sitting at the kitchen table putting my shoes on when Nate came toddling down the hall (have I mentioned how stinking cute he is in those one piece jammies?!?!)...with no nose bleed! My mom got there and we all sat around the kitchen table, at 3:30am, and stared at Nate's nose while he went through the Target toy catalog and showed us all the things that Santa is going to bring him. We watched him for about 20 minutes and decided to send my mom home and make one more attempt at getting through the night without another nose bleed. Thankfully, we did.

Nate and I headed to the clinic where we found out that his platelets, hemoglobin, and ANC had all tanked over the weekend, but you would've never known it by looking at him. His platelets had been 55 on Friday (normal is 150-400, but they don't usually transfuse until they get to about 10-20), Monday they were 9. So, we were at clinic all day long on Monday for Nate to get platelets and blood...it's a very long process, and the doctor said he didn't need to see Nate for a week, on this coming Monday. Now, this sounds awesome in theory but I was kind of nervous about going the through the weekend without knowing what any of his numbers were doing. I followed my gut this time and made the appointment for Thursday.

We went to clinic on Thursday and his hemoglobin and ANC were great, but his platelets had only come up to 12! He needed more platelets. I'm very thankful that I followed my Mommy gut and I have definitely learned not to second guess it. If we had waited until Monday to come in, Nate certainly would have had another bad nose bleed. They are truly horrible and we all want to avoid one at all costs.

Here are some facts about blood, platelets and donation that you may not know (I didn't, before Nate's diagnosis):
1. Platelets are yellow
2. Someone needs blood every two seconds.
3. Only 37 percent of the U.S. population is eligible to donate blood – less than 10 percent do annually.
4. One unit of blood can be separated into several components: red blood cells, plasma, platelets and cryoprecipitate.
5. Transfused platelets only last 2 to 3 days. Many cancer patients must get these transfusions every couple days until their body starts to make them again.
6. Donated platelets can only be stored for 5 days.
7. Children being treated for cancer, premature infants and children having heart surgery need blood and platelets from donors of all types, especially type O.
8. Blood centers often run short of types O and B red blood cells (Nate is O negative).
9. Shortages of all blood types happen during the summer and winter holidays.
10. If all blood donors gave three times a year, blood shortages would be a rare event.

I always knew that donating blood was a "good thing to do" and I've donated a few times in my life, but I never realized how truly important it is. Sometime soon, when things slow down (ha!) I would like to coordinate a blood drive in honor of Nate's fight. I hope you'll all help me with that. In the mean time though, there are lots of places to donate. Check out unitedbloodservices.org. Also, consider donating platelets. You can donate platelets more often than blood because they take out the platelets and put your blood back.

Ok, off my soapbox for now. Nate continues to do and be incredible! He has his appetite back and Thursday he had 3 waffle for breakfast and ate 2 lunches (one at the clinic and one with Mommy, Grandma and Linde after clinic). He's packing on the weight so he can be big and strong for surgery. He's smart and funny and so, so totally cute even when he's being naughty (which is a lot of the time). I sort of feel like I'm on a natural high all the time right now with my family home and happy. It just doesn't get any better!