The Beautiful Mind of a Child

Yesterday, we went to Toys R Us to get True Hope dolls for the kids.  They didn't have the boy dolls, so I let Nate get an Avengers cup and Wes a "grab bag" Lego minifig as a consolation prize.  On the way home, Wes opened his minifig and studied the leaflet inside picturing all the minifigs in this series.  He was excited to tell me that there was a girl Olympic swimmer, knowing that I used to be a competitive swimmer and triathelete.  I was just as excited and told him that we would definitely have to get our hands on that minifig.  A little while later, Wes turned the conversation to cancer and Nate running in to our ottoman.  It dawned on me that Wes may not understand that the ottoman did not give Nate cancer.  I explained to him that it was actually a good thing that Nate ran in to the ottoman because that is how we found the cancer that had been in Nate's body since he was born.  I explained that we were lucky that we found Nate's cancer before it grew all over his body...because we found it early, the surgery and medicine were able to kill all of the cancer.  Wes asked if sometimes the doctors find the cancer too late and the kids die.  He then asked if I would be sad if we didn't find Nate's cancer early and he died.  I told him that if anything happened to any of them...I would be sad for the rest of my life.  Wes then said, "Would you be so sad that even finding an Olympic swimmer minifig would not make you happy?".  No...not even that would make me happy.  To be a child again...to think that a toy could fix anything.  I love that sweet boy.

Nate has been doing well.  This round of antibody was definitely way worse than round 1.  He really didn't fully recover for over a week.  Luckily, he only has one more round with this combination of drugs, round 4.  His appetite, bowels, mobility and energy level are just now back to where they were before.  We went to clinic last Thursday, expecting for Nate to probably need platelets.  Super Nate did it again!  His platelets and hemoglobin recovered on their own and we went out to lunch at the mall and rode the carousel instead.  Much better than a day spent at the clinic.  We also don't have to go back to clinic until next Thursday!  Two whole weeks away from PCH!  That has to be some kind of record.  Nate has 4 more days of Accutane in round 2 (of 6) and is doing really well on it.  The peeling on his face actually seems a lot less this round.  He still takes it like a champ and has begun to give himself his other medications.  He really hates the flavor of one of them and he still gives it to himself.  Such a big boy!  He is still working on mastering the potty.  Some days are better than others.  He has even had a few days with zero accidents.  It's just a little hard because the key to potty training is consistency and it's hard to be consistent when he has to live in the hospital in pain every few weeks.  The major perk to the partial potty training is that Nate peed in a cup last week.  This is huge because the only way to get the needed urine samples before was to stick a bag around his penis...which he HATES.  Also, sometimes the bag doesn't stick well enough and the sample spills in to his diaper and is ruined.  Last Monday I told him he wouldn't have to wear the bag if he peed in a cup and he did it.  Woohoo!  It's the little things.

We are thouroughly enjoying our time home and are having lots of fun out and about and making the most of every moment.

Random Acts

Each day of antibody was a little better than the day before.  Wednesday (the 1st day) was the worst for pain and each day improved from there.  Thursday night, the bad fevers started and continued through most of Friday.  Friday was Daddy's birthday and we had a mini pizza party in the hospital room to celebrate.  Daddy stayed with Nate on Saturday and the fevers pretty much stopped.  So, Sunday at 12:30pm when the IL-2 infusion stopped, Daddy and Nate were released to come home.  Wes and I spent all morning cleaning the house and doing all of Daddy's chores, so he could come home and spend his Father's Day with his feet up, watching sports.  We relaxed and had a nice Father's Day dinner with Papa, Lou Lou, Grandma and Linde.

Nate is doing pretty good.  He is super tired and wears out easily.  We are trying to have fun in the little bits of time that Nate is feeling energetic.  He's feeling more like himself a little bit every day.  I like to compare antibody treatment to a REALLY BAD (and super painful) flu.  Nate is being forced to have the flu every four weeks.  He didn't eat much or get out of bed much for five days.  It's totally understandable and expected to feel super tired and a little funky for a few days after a really bad flu.  That's where Nate is at.  He's getting a bit better each day, and had a better day today at Tracy's house.  Monday, I took all three kids to clinic (yes, I am crazy) for Nate to get his blood check.  Everything looked pretty good except his platelets were 51 (an expected antibody side effect).  He will get them rechecked tomorrow and will need a transfusion if they have dropped below 50.  I am hoping that they have somehow started to come up on their own.  Nate hasn't had to have a single transfusion since being released from the hospital after his stem cell transplant (not even through radiation) and we'd like to keep it that way...not to mention that we hate spending all day at clinic waiting for platelets.

Last week was kind of tough.  It's always hard to "make Nate sick" by putting him through another treatment...especially when he has been doing so well.  It is so hard to see him sick and in pain.  Just when I thought it was going to be another really bad day, there was a random act of kindness.  There was the voice message from someone at Hubbard Sports Camp, who reads this blog and saw the scheduling changes we were dealing with, offering for us to change Wes's camp schedule around however we need to.  This person did not have to take the time out of their day to make that phone call.  We had figured it out, but it was so nice to know that this person cared enough about our little family to make such a nice phone call.  Then, there was the extra money in my pay check this week thanks to the sweet bookkeeper at my store who put my personal days in for me.  My schedule has been so sporadic this year, that I thought I would just have to forget about my personal days.  Honestly, I haven't even had the time to even think about submitting them, and still my store's bookkeeper took the time out of her day to notice my personal days that were about to expire and submit them for me.  Then today, I came home to a package from a couple women who went to pharmacy school with Chris.  These ladies sent us a gift certificate for a couple's massage package.  Wow!  How nice is that?!?  Out of no where, they decided to make sure that Chris and I would get some relaxing time together...and boy, do we ever need it!  Again, these things barely scratch the surface of all the wonderful, selfless things people have done for our family this year, they just seemed like such rays of sunshine in a very gloomy week for us.  So, thank you again to everyone, for everything.  We really can't wait to pay it forward.

The Greatest Dads I'll Ever Know

Wes

 I never knew exactly what a great Dad looked like until we had Wes.  Chris has been completely hands on since day one.  I've never had to ask for help with the kids.  He just jumped right in, changing diapers, rocking, snuggling, bathing, feeding and wrapping up babies in a super tight burrito.  Chris was in school when Wes was born and therefore got to spend a lot of one on one Daddy time with him while I worked.  Maybe this helped make him a great Dad?  I don't really think so.  I think it was just in him all along.

Nate

Now, Chris works hard all day to provide financially for our family, then comes home and does dishes, laundry, gives baths, brushes teeth, reads stories, put babies to sleep with ease...whatever needs to be done to keep our family happy.  You could say this year has been a rough one for us.  The one thing I have never had to worry about was if the kids are being well taken care of.  We have had to live completely separate lives for much of the year.  Going many days with only a few text messages sent back and forth.  One of us caring for one child in the hospital or in another city, while the other cares for the other two children.  This is never how we wanted this last year to go...but it has been an effortless dance, thanks to the great father that Chris is.

Ellie

It has meant so much to know that which ever child I could not be with was with their Daddy...their wonderful Daddy.  Ellie knows that Daddy can always comfort her and make her laugh, and the boys want to be just like him...dancing around the house singing They Might Be Giants and Beatles songs, and dreaming of being super heroes.  I know they WILL be super heroes one day...just like their Daddy.

There is one other especially great Dad that I know, who I suspect taught Chris everything he knows about being a wonderful, hands on father...Papa!  We certainly couldn't have gotten through this last year without Papa.  I'm sure this is not the way he pictured spending his retirement and yet he has never hesitated to jump in and help us anywhere and anyway we need it.  Sitting with Nate at the hospital and even sleeping there a few nights, watching Ellie while I take Nate to clinic, picking Wes up from school and taking him for smoothies, taking my car in for service, sitting at our house all day with workers...the list goes on and on.  It's no coincidence that one of all of the kids first words was, "Papa".  Thank you Papa, we love you and appreciate you more than you'll ever know!

Keepin' it Real

Usually, I try not to post less than attractive photos of myself on the internet, but in honor of International Neuroblastoma Awareness Week...we're keepin' it real.  This is what I look like after working 12 hours and a sleepless night of trying to comfort my sweet boy.  I also am too afraid to leave him to shower, so be thankful your computer doesn't have smell-o-vision.  This is what Nate looks like while there is a war being fought in his little body (he is actually "smiling" and saying "cheese" in this photo...everything is uncomfortable).  Cancer treatment is not pretty, but the alternative is so much worse.  As much as we hate this treatment, we are so thankful for it and the chance it is giving Nate at LIFE.

Nate had a little bit better day yesterday, pain wise.  The report from Papa, Grandma, Lou Lou and Linde is that he was mostly comfortable and sleeping.  The fevers really came with a vengence last night after the medication was stopped.  We spent all night giving him medicine and trying to make him comfortable.  The fevers would break momentarily, then come roaring back.  He is getting medicine every three hours to try and keep the fevers away...it's not working so great.

Nate is a trooper as always.  He is so sweet.  He keeps saying, "Mommy...I love you".  There is no way he could ever know how much I love him back.  The antibody started back up again almost two hours ago.  We are hoping that the pain and fevers today and tomorrow will be managable.  Sunday can't get here fast enough.

Bringing the Pain

I need a shirt that says, "Caution:  Cancer mom has had too much this week.  Watch the f@#$ out!".  We started our day at my favorite place on the planet...admitting.  Really...I despise admitting.  It takes forever.  I fill out and sign the same...exact...papers...every...single...time.  One time, I had to go to admitting 3, yes 3, times in one day because Nate had all sorts of different tests scheduled on the same day.  There really should be some sort of expedited admitting process for those of us who live at the hospital more than we live at home.  It's very stressful for me because Nate is always very anxious until we actually get up and settled in his room, so I want this to happen as quickly as possible.  I really do my best to smile, sign and answer their questions.  "No, we have not had changes since we were here last."  I would probably think to tell you if we happened to move or change insurance since we were here last...which was 4 whole days ago.  So, when the admitting lady told me that they didn't have a room ready for us and she didn't know how long it would take and we should just go sit in the waiting room...it took all my strength to keep my head from exploding.  I explained, loudly, that I knew it wasn't her fault but I was very angry because Nate's treatment had already been delayed for 2 days because someone didn't do their job correctly and I would not increase my child's anxiety by rotting away in the admitting waiting room.  Someone needed to get him a room and get him one now.  She eventually went to get the room assigning lady who said, "Nathaniel?  Here for the [procedure I've never heard of]?".  Um...no, Nathaniel Dinoffria, here for oncology.  Oh yeah, his room is all ready.  Oy!  My fuse in non-existent right now.

Nate was finally hooked up and started on all of his medications by12:30pm, with the antibody starting at 2:30pm.  The pain started, right on schedule, about 3 hours after the antibody started.  I sat and pushed his button every 10 minutes for about an hour, hoping the pain would get better and he could drift off to sleep.  Then, he threw up everywhere.  Even though he was complaining of stomach pain, I didn't expect him to throw up because he didn't throw up last time...but again, this is a slightly different cocktail of drugs, so you never know.  He was pretty upset at having to get cleaned up but seemed to feel a bit better after emptying his tummy.  We snuggled in bed, working through the pain.  Daddy, Wes and Ellie came to the hospital for dinner and for Daddy and I to switch kids.  I was worried that Wes and Ellie would be too loud and would upset Nate but they were very sweet and gentle with Nate and they all enjoyed getting a chance to say good night to each other in person.

Daddy is taking care of Nate tonight and trying to stay on top of his pain.  He still has about an hour and half of antibody to go, then hopefully he can get some good, pain free sleep.  Tomorrow, I work while Papa, Grandma and Linde will take care of Nate. I absolutely hate not being there with him on hard days.  I'm praying that he will be as comfortable and pain free as possible tomorrow until Mommy can come and give him special snuggles.

Delay

The infusion of IL-2 finished at 10:30am on Friday and we were out the door by 11am.  Nate handled it like a champ.  He started to get a rash on his shins and elbows on Wednesday night that threatened to slow down the infusion, but after a dose of Benadryl it started to look less angry and the doctor said he could continue at the full rate of infusion.  We headed home ready for a fun weekend and ready to gear up for the difficult week ahead.

I got a call from Nate's oncologist's fellow at 3pm on Friday.  The pharmacy did not receive the CH14.18 (the antibody) and would order it Monday to receive Tuesday and Nate would have to wait until Wednesday to start antibody.  This is a problem for so, so many reasons.  Nate was scheduled to be in the hospital Monday through Friday.  Chris's birthday is Friday and we had a date planned, Saturday we had plans to celebrate Chris's birthday and Aunt Jaime's birthday, then Sunday is Father's Day.  Now, Nate will have to spend Wednesday through Sunday in the hospital and all of our fun weekend plans are ruined.  I also have to work on Wednesday and Nate now needs a parent to be with him to check him in to the hospital, not to mention that the first day of antibody is the hardest and Nate needs his Mommy.  All of our childcare plans for Ellie now needed to be adjusted and Wes is signed up for full day summer camp to keep him busy while Nate is in the hospital and now it's too late to get our money back considering Nate and I will be home on Monday and Tuesday.  Then, the scariest problem...does this delay compromise Nate's care at all?  Will this potentially life saving antibody be as effective as it needs to be with this 48 hour delay?  Will all of his future cycles have to start on Wednesdays and subsequently ruin our weekends and my work days?

I would love to say I handled this news with grace and logic.  I did not.  I cried for three hours.  Sometimes I don't know how close I am to unraveling until something like this happens.  It's not just about one ruined weekend.  This last year has been so hard, spending more time in the hospital and traveling for Nate's care than at home as a family.  It just sucks that someone's mistake can cause us so many problems.  Once again, we figured out all new plans for the week and luckily all the people who have been helping us through this year came through once again at the last minute.  So, I'm enjoying these "extra" two days at home with my family and sleeping in my own bed.  Nate and I will check in to the hospital on Wednesday morning.  This week is supposed to be pretty tough, we aren't happy about the ruined weekend, but we are ready to get started and get this round over with...one round closer to the end.

Make the Most of Every...Single...Day

I have been avoiding writing this post.  I need to write about and pay tribute to a couple very special kids and I know I won't do them justice...so, I've been putting it off.  First, I'll write about the easy stuff...Nate.

Nate has been doing fantastic and we've been thoroughly enjoying our time at home.  He finished his first round of antibody strong and was discharged by Friday noontime.  We could tell he felt a little wonky on Saturday and Sunday, so we kept it low key and close to home.  That Tuesday, Nate had a clinic appointment and started his first, 14 day, round of Accutane.  Daddy is responsible for preparing it every morning and every night because it causes MAJOR birth defects if even touched by a pregnant woman.  No...I am NOT pregnant (despite my little April Fool's joke) and do not plan to be...but Ellie came a little earlier than planned and we aren't taking any chances with this medicine.  Chris just punctures the capsule, squeezes on a spoon full of fruit juice concentrate, and Nate takes it like a champ.  He's had a lot of dryness and peeling on his face from the Accutane, which we care for with lots of cream, but otherwise he is handling it very well.  Nate had another clinic visit on Thursday for some more blood work and we were told we didn't have to come back until he was admitted for round 2 of antibody...awesome!



Wes had his last baseball game and his last day of kindergarten (is it really possible that kindergarten is over already?) and we've got summer in full swing.  There's been lots of playing and playing with siblings, cousins and friends.  Lots and lots of messing up the house.  Swimming (or riding in a boat if you are Nate), the zoo, an eclipse, play dates, and movies (both watching and creating).

We don't have too many weeks that Nate is out of the hospital and Wes is out of school this summer, so I am planning fun for every possible second.  We took a day trip to Apache Lake last weekend with our buddies the Woods family and had such a great time.  It was a lot of fun, a little relaxing and we made lots of great memories.  The boys loved fishing and helping drive the boat.  Ellie loved the snacks.  Chris made all the kids call Sean, "Captain", Captain Sean spotted a few sea monsters along the way and Nate crawled under the bench and took a snooze until a wave of water splashed him in the face to wake him up...memories.

Nate and I checked in to the hospital Monday morning to begin round 2 of antibodies.  We knew this week would be an easier one because he is just getting a 96 hour infusion of IL-2, the immune system stimulating medication.  Most kids do fairly well with this, but sometimes they have allergic reactions and fevers.  Nate has been doing really well.  He is CRAZY!  He is running and jumping all over the hospital as I try to keep up with his IV pole.  We are playing, playing, playing.  I brought his potty to work on a little potty training.  We really haven't worked on potty training at all.  How can you effectively potty train when he has been too weak to even walk and had constant diarrhea for most of the last year?  I knew this would be an easier week, so I thought we'd give it a try while we're stuck in the hospital.  He has done really great!  We will just keep working.  Next week should be a pretty tough week with lots of pain and high fevers, so we'll take it one day at a time.  We should hopefully get to go home Friday and will check back in Monday for IL-2 combined with antibody.

 While I was enjoying every minute at home with my family, it was also a very heart wrenching, difficult week.  We lost two sweet children, from our clinic, to neuroblastoma, in the same week.  Two children that are both very dear to my heart.

First, I learned of Jake's passing.  You may remember me asking for prayers for Jake and his family a while back.  We met Jake and his mom at clinic and had an instant connection.  Jake was a sweet boy and a strong fighter.  He battled neuroblastoma on and off for 6 years, from the time he was 2 years old, with his family by his side.  I attended Jake's memorial service.  It was a Catholic service, entirely in Spanish.  As I sat through the service in tears, it stuck me.  I am not Catholic, I do not speak or understand Spanish.  Under normal circumstances, Jake's mom and I would not be friends, our paths would probably never cross.  Yet, here we are, bonded for life because of our little boys who have had to battle this disease.  It's so completely tragic and beautiful at the same time, but I would give anything for our paths to have never crossed...for our boys to not have had to battle this disease...for Jake to be here playing with his family.  We love you Jake...forever 8.

 Then there is Ava, sweet Ava.  Right when Nate was being diagnosed, before we even knew for sure what Nate's diagnosis was, a friend from high school mentioned that she had a friend who's little girl had neuroblastoma...Ava.  I contacted Ava's mom, who gave me some good information and the link to Ava's caring bridge site.  During Nate's first couple hospital stays, I sat and read through every single word of Ava's caring bridge...all 2.5 years of it.  The story I read was amazing, strengthening, encouraging, inspiring, and horrifying.  The amount of stuff this little girl had been through in her neuroblastoma journey through treatment and many relapses was incredible.  The fact that this sweet girl could still be smiling and her mom could still be standing gave me a such hope.  Here's the thing though.  They weren't just smiling and standing...they were living...living, loving and thriving.  Thriving in a world of cancer and treatments and endless traveling to search for a cure.  In those early days of Nate's diagnosis, I just didn't know that was possible until I read Ava's story.  We saw Ava and her mom around the clinic and hospital frequently, where I would continue to get great advice.  We were even lucky enough to fly on the private plane to Houston with Ava, her mom and Grandma.  It was such a pleasure to spend some time with this incredible girl and her amazing family.  Ava lived every day to the fullest until she was done fighting.  Ava was diagnosed at 18 months old and bravely battled neuroblastoma for 3.5 years.  We love you Ava...forever 4.

Hug your family and friends tight.  Tell them you love them.  Live every day to the fullest.  Do it for Jake, Ava, Ronan, RJ, and Brennan.  Do it for all the children whose time was cut way too short.