Everything's Great

I'm so sorry for the lack of updates.  I'm sure everyone is wondering how Nate is doing.  I will write a more complete update soon...most likely some time next week...but Nate is doing awesome.  Other than a few strange things, he really hasn't had any side effects.  He is FULL of energy, which is why I haven't been able to update the blog.  I have literally not had one minute available to get on the computer.  Nate has never really adjusted to the time change and is up until midnight every night, then up at 5:30am for radiation every day.  This makes Mommy tired too...so, I have been trying to nap with him every day...the days that he takes a nap.  Really, the amount of energy he has is incredible!!  I keep saying that the radiation must be energizing him...but, I think this is what 3 year old "normal" Nate is actually like...we have just never had the privilege of seeing him this way, and what a privilege it is.  So, I just wanted to take a quick minute to let everyone know that Nate is doing awesome and we are having a great time in Houston (despite missing Daddy, Wes and Ellie).  I will update more, when Nate slows down for a second...which I actually hope is never.

1st Day of Radiation

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



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

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

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.

Radiation Simulation

We got the radiation simulation results today.  This is one of the images.  There were 9 images total...slices through Nate's abdomen.  Honestly, when I first scrolled through the images, the room started spinning and I felt like I was going to barf.  I really just don't like seeing all of Nate's little organs that are going to be radiated.  This is actually the inside of his sweet, little tummy...and that is actually radiation.  Sometimes I just take a step back and say, "What the hell!".  It this really happening to my baby?

As you can see, though, proton therapy is clearly better for Nate.  The red is the highest dose of radiation, where they are actually aiming.  The yellow, green, blue is a descending dose of radiation.  Proton therapy is on the left...traditional (photon) radiation is on the right.  By getting proton radiation instead of traditional radiation, we will be sparing much of Nate's bowels, liver, heart and left kidney.  The radiation oncologist was even surprised at how beneficial protons are going to be for Nate.  Nate is a bit of a special case (which we've always known), because his tumor was taken out before chemo was started.  Normally, they don't even try to remove the tumor until after the 5 rounds of chemo...then they base radiation on the size of the tumor when it was removed (after it shrunk from the chemo).  Nate's tumor was never given the chance to shrink because it ruptured, so they will be radiating based on the initial size of the tumor (without any shrinkage from chemo).

  The real truth is that we will never know if choosing proton radiation for Nate actually will net him any benefit in the future.  Neuroblastoma patients get a relatively "small" dose of radiation compared to other cancers, but radiation is still radiation and it carries with it the risk of secondary cancers later in life.  We just feel that the potential benefit to Nate in the future outweighs the temporary inconvenience of being away from home for 2 and 1/2 weeks.

So...proton therapy in Houston it is.  We will leave on Easter night and Nate will receive his first dose of radiation at 7am on April 9th.  I'm scared.  I know that most people contend that radiation is by far the easiest part of treatment...and I'm counting on that.  It's just that Nate is doing SO well.  I don't want him to be tired or nauseous (the 2 most common side effects).  He's eating well, takes his medication without throwing up, and has so much energy.  He's gaining a bunch of weight and is even starting to look appropriately "3 year old chubby" in his face.  He has a little meat on his thighs and he has his butt back!!  It will break my heart if he loses his appetite and energy from the radiation.  Well...one day at a time.

Today...Nate is awesome!  We went to clinic today and all his numbers are great.  His hemoglobin started trending up on it's own, so no need for a transfusion.  He hasn't needed a single transfusion since being released from his bone marrow transplant.  He's been off of IV fluids all week and his kidney function and electrolytes were all perfect.  He spent the day fighting with his sister and playing with his brother and neighborhood buddies.  He's just enjoying being a regular kid.

Brotherly Love

Look at those boys!  Those faces just melt my heart.  These pictures were taken almost exactly 3 years apart.  So, so sweet!

Wes and Nate are getting to be the absolute best of friends.  Up until just recently, they would play nice from time to time but more often than not, a fight over a toy was more important than brotherly love.  The almost 3 year age difference meant that Nate was continually disappointing Wes and would never play "right".  Just recently, Nate is finally old enough that they are able to communicate well enough to have some real, meaningful play time.  They will play for hours, nicely, in one of their rooms or outside, disappearing into their own imaginary world, together.  Last night, they were asking to sleep together in Wes's bed.  I promised we will try a "sleepover" this weekend.  Wes is finally able to see what is so great about having a brother.  I don't know if this would have happened naturally anyways, or if Nate being away from home so much has made them appreciate each other more.  I do know, though, that it breaks my heart to keep separating them.  We will be in Houston for 2 1/2 weeks...then, over the next 6 months, Nate will have 7 more weeks of scheduled hospital stays (hoping for no extra stays for sickness or infection).  That is still a whole lot more time for my sweet boys to be apart.

Nate had a clinic visit today and is still doing spectacular.  They stopped his IV fluids and will recheck his electrolytes and kidney function on Thursday to make sure the fluid he is drinking by mouth is enough.  It sure will be nice to not have to continue hooking him up every night for 6 months like we were told might be the case.  His platelets are almost normal, but his hemoglobin fell a bit.  He is now taking folic acid in hopes that it will help his hemoglobin recover and we can maybe skip a transfusion later this week.

After Thursday's visit, Nate will be released from the bone marrow transplant team, back to his regular oncologist.  Another major step forward.  Nate will have an appointment with his oncologist next week and we will discuss our plans for radiation and I hope to get a better feel for when antibody therapy will begin.  We know it has to begin, after radiation, and by day +100, but Nate's radiation should be complete by day +67, so I'm not sure when antibody will start, or if he gets scans or anything in the mean time.

Right now, we are enjoying being home and looking forward to celebrating big brother Wesley's 6th birthday this weekend.

Long Overdue Update

I used to always wonder what I did with all my time before I had kids.  Now, I wonder what I could have possibly been doing with all my time pre-cancer.  Life is C-R-A-Z-Y right now!  I am terribly sorry for the lack of any updates on Nate (save a few quick Facebook updates), but the last two weeks have been so incredibly and completely crazy, busy that I have barely had time to catch my breath.  Let's see where I left off...a week ago, Monday, I took Nate to clinic and everything was holding steady.  They decided to remove the lipids from Nate's TPN and see what happened with his appetite.  I have been back and forth on the phone with MD Anderson for months regarding possibly taking Nate to Houston for proton therapy radiation instead of traditional radiation.  I received a call from them on Monday after clinic, for an appointment the following Tuesday!  It was perfect because Wes's spring break is that week and we could all go as a family...but, one week didn't give me a lot of time to make all the travel arrangements I needed to make for our family of 5.  I spent all week making phone call after phone call to try and get everything arranged.

Wednesday was his first day, after the lipids were removed, and my mom took care of Nate while I worked. She kept a log of what he ate throughout the day, and he ate SO good. I took the log to clinic with us on Thursday and everyone was quite impressed with his eating and weight gain. Nutrition decided to stop his TPN altogether and just keep him on IV fluids at night. I was told that Nate may have to continue IV fluids at night for up to six months. Until he consistently drinks 40 to 50 oz a day...and more in the summer...he needs the fluids. The chemo and antibiotics he received during transplant are all really hard on his kidneys and they want to make sure that he gets plenty of fluids to help protect those kidneys. Randomly, Nate's WBC count was slightly elevated, which could mean the start of a possible infection, so they took cultures from his central line, even though he hasn't had any fevers at all.  I didn't think too much about it.  Nate has been doing SO well.

Friday morning at 4:30am, we got a call...Nate's cultures grew bacteria...bring him to the ER immediately.  Let me tell you...there were a few "F" words flying around my house that morning.  Thoughts and emotions flew through my head...WHY?!  Why does he have to get a line infection now?!  How did this happen?  Could we have prevented it?  We just got out of the hospital...how long is he going to have to be in again?  What are we going to do about Houston?  I worked so hard all week to make all the travel arrangements and now everything is out the window.  Are we ever even going to make it to Houston to check out this possibly very important option for Nate?  Wes has spring break...are Nate and I really going to have to spend Wesley's entire spring break in the hospital?

Then, the real sadness hit when I realized that I not only had to tell Nate that he was headed back to the hospital after only being home for a week and a half...but, I also had to tell Wes that he was not going to get to go on a trip to Texas (which he was so excited about).  I screamed, I cried, I had a panic attack for about 2 minutes...then I jumped in the shower and got ready to take care of my boy.

When I told Nate we had to go to the hospital he cried and said, "We just got back from there!".  We got to the ER and went through the regular motions.  More cultures to confirm that it wasn't a contaminant, start antibiotics, monitor vitals, and head up to the 7th floor.  Once we were up on the floor, Nate was much more comfortable.  I grilled the doctors on if there was any way possible that we could still get on a plane Sunday...this was Friday.  The only way it was going to happen was if the positive culture was caused by a contiminant (something that got in there accidentally while it was being collected).  If the culture taken in the ER stayed negative for 48 hours...they would let him out Sunday morning.  Sure enough, contaminant it was.  It bought Nate 48 hours in the hospital...but he came bursting through the garage door Sunday morning..."I'm home!!!".

I continued packing and planning, like we were going to be able to leave Sunday afternoon and if it didn't work out, then we would cancel.  Luckily, we were able to get on that plane Sunday afternoon.  We were very fortunate to get a ride to Houston on NetJets through Corporate Angel Network.  Normally, Corporate Angel Network will only fly a child patient and 2 escorts.  We flew with another little girl we know, who is getting treatment in Houston, and her mom and Grandma.  They had an extra seat on the plane, and Ellie could sit on my lap...so, they let all of us fly.  It was so awesome!  They were so nice!  They had all sorts of food and snacks and movies for everyone.  Other than a couple overly excited, antsy kids...it was a great flight.

 We were also fortunate enough to be able to stay with our good friends, Stephanie and Charles.  They graciously opened their beautiful home to our crazy family...we more than tripled the occupancy (and noise level) of their house!  Stephanie even moved her work schedule all around so that she could watch Wes and Ellie for us while we took Nate to his appointments.  The kids absolutely love Steph and Charles and had a great time visiting them, even though Nate can't really get out to do much.

The first day we were there, we took the kids to a park for a picnic, rode the small train around the park and let the boys eat some ice cream by the pond.  The second day, we had Nate's appointment at the MD Anderson Proton Therapy Center.  Honestly, I have been back and forth on the phone with a representative from the center for months.  Getting them the records they needed, trying to get more information about proton therapy for Nate and arranging appointments.  It was a very frustrating process.  I never got any of the answers I was looking for.  I almost gave up several times.  I'm glad I forged ahead because actually visiting the center was a whole different experience then trying to communicate with them on the phone.  Everything was very personal and informative, everyone was very nice.

So, what is proton therapy and why are we considering it for Nate?  Proton therapy is a more specific form of radiation that more accurately targets the area you are trying to radiate and leaves the rest of the surrounding, healthy tissue alone.  This can be especially important in things like brain tumors, where you only want to radiate the tumor and leave the rest of the brain alone.  Nate's case is not that straight forward.  First of all, they are not radiating a tumor (there are no more tumors left in his body), they are radiating the tumor bed (where the tumor originated from).  They do this because neuroblastoma studies show that the combination of chemo, surgery and radiation is very effective at not allowing the tumor to regrow in the original area (relapse occurs in other areas, but that's a topic for another time).  So, how will Nate benefit from proton therapy?  What organs and structures will be spared from unnecessary radiation?  Those are the answers we have been searching for, for months and don't completely have the answers to yet.  The problem with proton therapy is that it is fairly new.  The oldest machine is about 20 years old and they have only been doing it in kids for 10 or 15 years.  The true, theoretical, benefit to Nate will be decreasing his risk for secondary cancers later in life.  They don't have the research yet to see if this prevention is really happening because secondary cancers don't show up for 20, 30, 40 years or so, and proton therapy hasn't been around that long.  We do know that it is equally as effective as traditional radiation.  So at worst, it will be the same...at best, we can save Nate from cancer later in life.  All of the chemo drugs he has gotten, as well as even the proton therapy...could cause cancer later in life.  So, it could still happen, but if we can take away even a little of his risk...shouldn't we do that?  We think that we should.  We plan on Nate living a long, healthy life and we want to try to make the decisions now that will help him do that.  The only problem is that proton therapy is only available in 10 centers in the US right now...with 4 more under construction (one being here at the Mayo...in like 2015...a little too late).  So, it would mean separating our family, once again.  We don't take this lightly and want to make sure that this therapy will actually provide a benefit to Nate, before he and I go and move to Houston for several weeks.

 What did we find out?  Well, the Dr. in Houston said that if Nate were his child...he would do proton therapy.  We decided that we wanted them to do the radiation simulation on Nate, to get the full picture.  Wednesday, Nate was scheduled to be sedated and have the simulation done at 1pm...and no eating before hand because of the anesthesia.  We successfully distracted Nate with a trip to the park and he was such a good boy.  He only cried for food a few times.  They put Nate under anesthesia and did a detailed CT scan of his abdomen.  The doctors will meet over the next week to discuss Nate and his treatment plan.  They will also do a work up of a traditional radiation treatment plan, so we can see the difference.  The Dr. thinks that they will probably save much of Nate's liver, his other kidney, his stomach and bowels from unnecessary radiation.  We will see what the actual simulation shows.  Most likely Nate will receive 12 radiation treatment, Monday through Friday, with anesthesia every day.  This is the same with proton or traditional (photon) radiation.

The simulation went well and we should hear from MD Anderson next week some time.  Nate woke right up from anesthesia ready to chow down and we spent the rest of the day playing with Stephanie and packing.  Corporate Angel Network was not able to find us a corporate flight home but was kind enough to get us 3 commercial tickets home...so, we only had to buy one ticket.  We are so, so grateful because the ticket prices at the last minute were through the roof!  We got on a plane Wednesday night and headed home.  All three kids were so, so good on the flight.

We got up early this morning and headed to Good Sam for Nate's radiation consult with the local radiation oncologist, about traditional radiation.  I had spoken with him once before and he told me that he believes in the theory of proton therapy saving normal tissue from future cancer in kids and tells parents to go if they can.  Today, he told us that if Nate were his child he would take him to Houston for proton therapy.  Wow!  Really, how can you argue with two radiation oncologists telling you to take your child to Houston for treatment?  So, it looks like we will probably be heading to Houston for treatment.  Nate is on the schedule already to begin treatment April 9th...hopefully for just 12 treatments.  We should have the full results of the simulation and treatment plan some time next week and will make our complete, final decision then.

The plane tickets are pretty affordable right now, so I think I will buy a bunch of tickets now, before the price goes up.  Stephanie and Charles have welcomed us with open arms and we are so, so grateful.  It will be nice to stay with "family" and not be alone in a city I don't know well.  We are also planning to come home on the weekends so that our family can be all together for a couple days each week during the treatment.  We are also trying to plan for Jen to come help me for a few days.  Jen, Stephanie and I met in pharmacy school and have been the best of friends ever since.  I think it will be a little fun for us all to look forward to.  Nate won't know what to do with all the Mommy and "Auntie" attention that we will lavish on him!

 I want to take this opportunity to again thank, not only our amazinly supportive family and friends...but, all the people that have helped us financially in all ways big and small.  Obviously, the Super Date for Super Nate was a huge success, but all along the way there has been help pouring in.  This decision...this moment...this treatment, has been made possible by you all.  We have been able to study the facts and speak with the experts and make, what we believe is, the best decision for our son based on this information.  We didn't have to think about finances or the care of our other children.  We knew that if this is the best decision for Nate...we can do it...thanks to all of you.  How amazing is that?!  One of the major problems with childhood cancer is the limited funding that goes into research for our kids means that many treatments and studies that are saving children's lives are only available in a handful of areas of the country.  Many, many, many children must travel if they have any hope of getting treatment that may save their life.  Many families, can not travel.  Many families don't have the option of searching for the best treatment for their child, they must accept the treatment that is available at their home hospital.  We feel so grateful and blessed that we have so many options for Nate.  This decision to separate our family again, is far from an easy one.  Thank you for helping to give us the opportunity to make this difficult decision.

Now, how is Nate?!  I can not even explain in words how great he is!  I keep saying that he is a "real boy" (Pinocchio style) again!  He is eating like a horse and gaining weight.  His weight is back up to what it was before surgery in December.  He is playing and playing.  His energy level is great and he is getting stronger and stronger every day.  Today, he climbed up the rock wall on our play set...boots and all.  I know, TMI, but he is pooping actual, solid poop!!  After 3 months of diarrhea...this is HUGE!  Really, there is no way to describe how sick he was in December and January and how hard it was.  He was starting to get stronger prior to transplant...but, never in my wildest dreams did I think he would be doing this good, this soon after transplant.  You would think that going through one of the harshest treatments there is, would knock him down pretty good considering he entered at such a weakened state.  Nope, not Nater Tot!  Those must have been some super, duper cells!  He went to clinic this afternoon and his platelets are up, almost to normal, and all his numbers look great.  They have also cut his IV fluids in half because he is drinking so well.  He is so completely, over the top cute.  He never stops talking and says the absolute sweetest, funniest things.  Someone at the hospital this morning was drawn from another room by his sweet, little, jabbering voice and just had to come meet him.  She asked, "How do not just laugh all the time?"...oh, I assured her, between him, Wes and Ellie, we DO laugh all the time!  He is also full of piss and vinegar...and I love it!

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.