Normal

 We have all been enjoying "normal" life and all our time together.  There's been family dance parties and hours and hours of playing with siblings, cousins, neighbors and friends.  I've been able to attend several special events at Wesley's school in the last couple weeks...probably doubling the amount of time I've been able to spend at the school this year.

Nate has been very good about wearing his mask, so we have let Nate get out to a few calculated places as long as he wears his mask and I have lots of Clorox wipes and "hanitizer" in tow.  One of those places was to Wesley's baseball practice and game.  Nate sat and cheered, "swing batter, batter, batter" and "come on Wesley, you can do it".  He's his brother's biggest fan.  He also got to be a big team helper and help the coach gather up all the baseballs after practice.  Next year...he gets to play...I can't wait to see him on that field.

The kids have been outside every single day playing with the best neighbors on the planet until it gets dark.  The weather is beautiful and other than some nasty allergies, we are really enjoying being outside every second we can.

We've also had the small matter of a big boy's 6th birthday to celebrate.  I've been busy planning a special angry birds party for my sweet boy.  There's nothing Wes loves more than a well planned party and even though we had to contend with some major wind...I think the party was a hit.

Nate helped me fill Wesley's room with balloons, on his actual birthday, while he was at school.  Then we celebrated with Wes's favorite meal, Chino Bandito, some gifts and chocolate cake.  Really, unless a beach is involved, you pretty much can't beat all the fun we've been having over the last couple weeks.

 Tuesday, Daddy took Ellie down to Phoenix Children's Hospital for an ultrasound first thing in the morning.  You see...Ellie has a big belly (yes, I am aware that rhymes)...she also has some chunky thighs to match.  The problem is that a large abdomen is one of the possible signs of neuroblastoma.  Ellie is also almost 18 months old and there is a "magic" age cut off for a possibly better prognosis if neuroblastoma is diagnosed prior to 18 months.  The chances of 2 siblings having neuroblastoma is extremely, extremely rare...but, it does happen and I now have a hard time seeing a big belly as merely pudge.  So, Ellie asked me to please go ahead and get her an ultrasound again because she was tired of me squishing her belly and feeling for a tumor every time I changed her diaper.  The results were back almost before Daddy and Ellie got back from the hospital.  Thank the Lord, all that is in Ellie's belly...is Ellie...and too many "crackas".

 A couple hours later, I took Nate to clinic.  I couldn't wait to get him on the scale.  He hadn't been weighed in a week and he is starting to look so filled out.  He officially weighed in (without boots) at 16.6kg (up a full kg from a week ago)!!  That is the heaviest he has been since before his first surgery in July.  I am just so happy and so proud of him for how well he is doing.  All his blood work came back great.  His hemoglobin is coming back up on its own and is almost normal and his platelets are normal.  We got to meet with Nate's main oncologist and discuss the next step after radiation which is antibody treatment.  We started talking about some dates so that I can plan out the summer a little bit.  I hope to sign Wes up for summer camps while Nate is going to be in the hospital and I hope find a week that we can plan our normal, summer San Diego trip.  Nate has been talking about going to "our big house at the beach" (a condo we rented last year), since we got back in July (5 days before our world eploded) and I would love to make this happen for him.  I know that trip will help pull us all through this treatment a little easier...I really hope we can work it out.

So now I am frantically getting ready for Easter and packing for Houston.  I can't believe we leave on Sunday.  As much as I'd like to stay suspended in these last couple of weeks of fun that we have had, I am anxious to get another part of this treatment checked off our list.  I'm nervous but I know Nate is a true super hero and I know he will power through this just like he has powered through the last 9 months.

Day +18...ESCAPE!!



What a whirlwind week it's been!  Monday morning the doctors did their rounds and came in to see Nate.  Nate was doing fantastic and because his fever had disappeared before the "heavy duty antiviral" was really even given, they felt pretty confident that his fevers probably had been benign and not due to the virus that showed up in his blood work.  They said that he could finish out another day of the antiviral and go home Tuesday morning!! Incredible!

I began packing up the U-Haul's worth of stuff that we had acquired in our little room over the last month.  I took several loads down to mine and my aunt's cars on Monday night, so we could make a quick exit on Tuesday morning as soon as they said, "GO"!

 Tuesday morning, Nate finished up his meds, we went over discharge instructions, finished packing, got unhooked (finally!), put on some real clothes, and hopped in the wagon...ready to go!

First, the staff had a little surprise departure celebration planned.  Nate and I ran through the streamers, so excited to be heading HOME!  Mike Leach, from the Arizona Cardinals, and his wife were even there to join in the "party just for me" as Nate says.  There's even a little story about it on the Cardinals website.  I feel like I have been pretty good at keeping my emotions out of this transplant process, as much as possible.  I had one really hard day, out of 26, I thought I did pretty good.  I kept my head in the game and concentrated on taking care of Nate's needs from one moment to the next and tried not to get caught up in the big picture of the sad situation we were all in.  As we were packing up the room to go home and running through those streamers...I let the tears flow.  We still have so much further to go in this journey...so many more treatments to get through...but, this was a big one.  A big, scary one.  I was just so overjoyed to be mostly "on the other side" of this part of the treatment...that I let myself be consumed by the emotion of it.  Then, I had to explain to Nate that sometimes Mommies cry when we are happy...cause Mommies are silly like that.

Nate got to breathe fresh air (through a mask) for the first time in 26 days!  We hopped in the car and were on our way...well, then we had to turn back a few miles up the freeway to retrieve a forgotten suitcase (man, I couldn't get out of there fast enough).

 We headed to Lizzy's to get baby sister, Ellie, and to do a little playing.  Nate had SO much fun playing with his sister and cousins.  Remember, Nate hasn't even seen another kid for 26 days.  It was just so awesome to watch.  He was so excited to just chill with his brother and watch cartoons when Wes got home from school that he didn't even take a nap all day.  Again, this is a kid who's body has been put under so much stress in the last month that he could barely manage a walk across the room without needing a nap.  There's no place like home!

It was just the most incredible thing to wake up Wednesday morning to my whole family in the same place.  Ellie climbed in Nate's bed to give him good morning kisses and all three kids played with their "pet hospital" before Wes had to head to school.



Let me tell you a little story about the sweetest "almost 6 year old" little boy that I know.  It's not easy having a little brother with cancer and a baby sister...as the oldest kid, your needs always seem to come last...you can always wait.  I try to make sure he knows how important he is to all of us...I tell him every day how special he is...but it's still hard.  I still have to rely on him to be much more mature than his "almost 6 years".  Sure, he has his moments (don't we all?), but he takes all of this craziness in stride.  He cares so much for his little brother and is so incredibly sweet with him that it brings tears to my eyes several times a day.  He gets things for Nate when he needs them, plays gently with him, reads him books, carries Nate's TPN and pumps (which is too heavy for Nate to carry on his own) around the house so that Nate can walk around, and even "wrote" a very special song for his brother.  Thursday morning, I heard two sweet little boy voices over the baby monitor (we have the monitor in Nate's room).  Wes had gotten out of bed and gone straight to Nate's room to check on him.  They had a very cute conversation about where Nate wanted to go (to watch TV in the living room) and how he was going to get there (Wes would carry his TPN bag).  Then Wes helped him put on his shoes, because Nate is having a hard time walking without shoes on.  I just laid in bed, smiled and cried.  Even Ellie has been a sweetie. She found his blanket in the other room and brought it to Nate on the couch and laid it on top of him.



How has Nate been doing at home?  Spectacular, really!  He wasn't eating anything, at all, for the first few days...only water.  He would ask for every food on the planet, and I would get it for him, but he would just stare at it, or spit it out.  He started out getting TPN for 15 hours a day, for the first few days home.  Thursday, we went to clinic and all his blood work looked great.  He didn't need any transfusions, which is awesome.  Platelets are the last thing to recover and his platelets weren't normal yet, but not low enough to need a transfusion and they had been holding their own for almost a week.  They knocked his TPN down to 12 hours a day.  Friday...Nate started eating!!  He's still building up slowly, and still getting TPN at night, but I am so, so happy.  He didn't lose too much weight during the transplant (though, he still has so much he needs to gain) and we just hope that he can continue to gain and grow.  He has also developed a taste for chocolate milk (which I have been ,making with Carnation Instant Breakfast).  This is awesome because, before he would only drink white milk (with nothing added...I tried everything), and it's so nice to know that I can get some extra nutrition in him through his "chocolate milk".

He has been playing and playing and playing with his brother and sister and all the neighborhood kids.  When he first saw one of his favorite neighborhood friends, John, he "ran" the fastest I have seen him "run" in months and gave John a great, big hug...it was so sweet!  He is just getting stronger and stronger every day.  Our main challenge right now is getting his oral medication down him.  He throws up at the sight of it.  It just sucks to watch all that food we try so hard to get down him, come right back up.  We're working on it.  The only other challenge right now is keeping Nate at home.  He cried the other day because I wouldn't take him to the mall or Costco.  He just wants to be out in the real world like a normal kid.  We've had a really long talk about germs and he's such a smart boy, he understands so much.  He has been really good about wearing his mask and washing his hands to keep those nasty germs away.

We head to clinic again tomorrow afternoon  and will find out how all of his blood and electrolyte counts are doing.  They will make adjustments to his TPN...maybe get rid of the lipids, or maybe get rid of the TPN all together and just have him on IV fluids for a little while longer.  I can't wait to tell them that he is eating!  That's all I can think of for now.  Thank you to everyone for all your support through this process.  Thank you for the child care, meals, laundry service, pool service, and help clearing the clutter.  Thank you for helping us take care of Nate, Wes and Ellie and thank you for helping us take care of ourselves by giving us a break, visiting us in the hospital, checking in on us and making us laugh.  Thank you for the moral and emotional support and for all the thoughts and prayers.  Thank you for all the fun and uplifting notes, cards and packages.  You all know who you are.  You are angels on earth and we couldn't have gotten through this without you.

Day +14, +15, and +16

Remember that whole pep talk I was giving myself about counting my blessings and not getting down in the dumps.  Yeah...well, Friday was my time to get down in the dumps.  This life is hard and it is 24/7 non-stop, with no breaks.  Sure, we can breathe slightly easier from time to time, but it is nothing like the life we knew before and some times it gets to me.  We've been here for 3 weeks now (really, we've been here for 8 months now) and I'm tired of the hospital, I'm tired of missing my kids and my husband, I'm tired of asking for so much help from everyone...I'm just tired.  We were really hoping to be hearing the word "discharge" sometime this weekend...but then these fevers wouldn't stop.  Thursday, the doctors began grasping at straws and testing everything there is to be tested to try and find a source for Nate's persistent fever.  He had another fever at 8pm on Thursday night, but by the time the Tylenol came up from the pharmacy, the fever had gone away on it's own.  I took that as a good sign and made my mind up that we had seen the last of the fevers (positive thinking and all).  Shortly thereafter, word came from one of the bone marrow transplant doctors...Nate tested positive for a virus and they are starting him on a heavy duty antiviral.  A heavy duty antiviral that is hard on the kidneys...on top of the other 3 heavy duty antibiotics and antifungal that are also very hard on his kidneys.  I had a ton of questions, but couldn't get answers to any of them because I wouldn't get a chance to talk to the doctors until the morning.  Friday morning, Nate had gone the whole night without a fever (woohoo!) and I was able to talk to Nate's doctor and her opinion is that this virus can be scary for bone marrow transplant kids (probably not as much for the stem cell transplant kids), so they don't want to fool around.  She thought it was most likely the virus causing the fever and if the fever never came back that we could possibly attribute that to the heavy duty antiviral...possibly not.  Here's the problem, the heavy duty antiviral is IV only and therapy is anywhere from 1 to 3 weeks, which means we just bought ourselves another 1 to 3 weeks in the hospital.  I was devastated, the thought of doing this another 3 weeks was just too much for me.  I headed home that afternoon, hoping to recharge and renew and be ready to fight another week.

Wes had opening day for baseball on Saturday, with team pictures, a hit-a-thon and a double header.  He smiled a big gap tooth smile for his pictures, won a prize in the hit-a-thon and played a great game with some great hits and fielding.  After everyone took a good nap, Wes and I got started on a surprise we've been planning for Nate for a few weeks.  Then Jen and family came over for dinner and to make some Super Nate capes for the GCU Run to Fight Children's Cancer next Saturday.

We got all our stuff together, bright and early this morning to head down to the hospital to surprise Nate before he laid down for a morning nap.  Wes, Nate and Ellie have not all been together for 3 weeks now...Nate hasn't seen any kids at all for 3 weeks.  I know I'm fun and all...but kids need to play with kids.

Wes got the idea from a book to hold a sign to Nate's window telling him that he misses him.  Nate's window is 7 floors up...so, we knew that would be a little tough.  Instead, we made a sign big enough for Nate to see from the 7th floor and took it to a place that I knew Nate could see from his window.  We also got a bunch of balloons and released them, so that Nate could watch them float by his window (if you look closely in the window on the bottom left of the picture above, you can see Nate's bald little head watching the balloons float away).  We wore our Super Nate shirts and capes and all the kids thought it was great.

Nate had a great, fever free, weekend with Daddy.  They have taken him off of all his antibiotics because they weren't treating anything and they were all hard on his kidneys.  They took his pain pump away last Wednesday and he has done great without any pain medication.  The rest of his meds are being weaned and switched to oral.  They heavy duty antiviral will stay on at least until tomorrow.  They will repeat the viral test and hopefully decide to switch to an oral antiviral.  It that happens, we are looking at possibly going home by the end of the week...hopefully.  Nate is happy and cute and willing to get up and walk and play and begin regaining his strength.  There aren't too many places to go when you're stuck in this room, so we can't wait to get him home where he can "run" and play.  The only thing left is eating...which is a big thing...but, we are hoping this will improve when he is home too.  Nate's taste buds have been destroyed, so nothing tastes how he expects it to...everything tastes "yucky".  Once we get home, we will have so many more options to offer him...at any time of day.  He will probably come home on some sort of feeding device (IV or tube) to get him through until he gets more used to his "tasters" and starts eating again.  Getting him to eat again is not a challenge I'm looking forward to, but it is what it is and I'm up for it as long as it means my boy can come home.

  The house is ready, of course there is always more clutter to be cleared, but the rugs are cleaned, everything is sanitized, air filters are changed...all we need is our Nater.



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.