Oh, Hell No!

We've been having a fun couple of days at home.  Doing normal things like running errands and going to the park and out to lunch.  It's just so nice to see Nate feeling more like his normal goofy, ornery self.  He had a clinic appointment this afternoon to check his blood and electrolyte counts and talk about starting chemo.  He is due to start on Saturday, but I wasn't sure if they do hospital admissions on Saturdays, so I was anxious to find out when they would admit him.

The nurse came in to draw his blood and said she she was only going to change one of his line caps because he was being admitted and they could change the other one in the hospital.  HOLD THE PHONE!!  Being admitted?!? You mean, like tomorrow, right?!?  No...they had him listed to be admitted TODAY!  What the heck!  No...one...told...me...this!  I tried to quiet the screaming in my head and calmly explained that we were absolutely not prepared to be admitted today.  Not mentally, emotionally or physically.  They were very good, apologized that no one explained this to me and quickly changed the plan.

He got all the blood work done that he needed to be admitted.  They were going to send all the orders over and have the hospital call us tomorrow (Friday) when they have a bed open, then we will go right to admitting.  They also assured me that they will be able to start chemo on Friday, because I didn't want Nate to be admitted to the hospital on Friday just to sit around and wait for chemo to start on Saturday.  The good news is that this round is exactly 72 hours of infusions, so Nate should be able to come home some time on Monday.  Please pray that this round will be as easy on him as possible.  Realistically, this could be another rough one, but we know that Super Nate is capable of anything.

1200

I've been trying to calculate the miles we've driven for Nate's medical care since all this started, in the interest of keeping track of all of his medical costs. Since 7/7/11, we have driven over 1200 miles back and forth to PCH for Nate's care! Wow!

We could have gone to Houston to visit my good friend, Stephanie. We could have gotten out of the heat and sunshine and taken a trip to Portland...I hear it's a great city. We could have even gotten our passports and almost made it to Calgary or Acapulco! 

I wish we could have gone one of those places instead. 

When this is all over, maybe we should take a trip to a destination that's distance from our home equals the "distance" we've gone to defeat cancer. Though, by then it will probably be so many miles that it may take us around the world and right back home...which is where we really want to be after all.

Round 3

Well, Round 3 was awful, but I feel like I can actually say now that it is over.  Nate started to really make a turn around on Sunday.  His electrolytes normalized and they took him off of the TPN (IV nutrition) late morning on Sunday.  He was taking a nap when they turned it off and when he woke up, he immediately started asking for food.  See...I knew that thing was making him not want to eat.  They wanted to watch him for the next day and make sure his levels stayed good with oral electrolytes and eating normal food. He still had a little diarrhea, but all of his cultures came back negative and it was decided that the diarrhea was due to the chemo, or because he hadn't eaten in so long.  Everything looked good on Monday.  His electrolytes were still good, his ANC (immune system) came back up and he was eating really well.  It was time to go home!  We just had to wait FOREVER for the doctor to sign the order for us to leave.  Several times I thought about just taking off.  Who was going to stop me?!  The doctor finally came in to go over all the stuff I already knew and said we were free to go.  I threw Nate in the stroller and practically ran out the door.  I got right out the front door of the hospital and got a call on my cell phone.  "Mrs. Dinoffria, you didn't sign the discharge papers.  Come back up please".  Damn it!  Back up to the 7th floor we went.  Nate was not to happy about it, and neither was I.  I signed their stupid papers and we sprinted quickly to the car and headed home for a nap in our very own beds.

So, now we're home.  Enjoying every second of being together, before we have to start Round 4 (we think on Saturday).  The time is much too short, but we'll take what we can get.  Round 3 was supposed to be a tough one...and it was hell.  I guess Round 4 can be a little tough too, but in different ways.  We are going to take a few days and not think about that though.  There will be plenty of time to think about it when Nate is actually going through it.  I woke up to the most beautiful sounds this morning...a husband in the shower getting ready for work, a little blond boy in my room asking to eat hot lunch at school, a little bald boy calling, "Mommy" from his bed and a sweet baby girl singing a sweet baby song in her crib.  It may be simple, but it's really all I've ever wanted in life...and I appreciate it so, so much more than I ever thought I could.  My heart is full.

Slowly but Surely

Lou Lou asked Nate for a smile and this is what she got!

Sorry for the lack of updates.  There isn't a whole lot to report right now and I haven't really felt like writing about it.  Nate is doing much better, but he is far from recovered and we have no idea how much longer he will have to be in the hospital.  He is due to start round 4 of chemo a week from tomorrow, so we are praying that we get a few really good days with him at home before we have to check back in to the hospital and start this all over again.

Nate's electrolytes have pretty much returned to normal levels, thanks to IV supplementation.  Now we have to see if they can back off on the IV supplementation and begin giving it to him orally and see if the levels stay the same.  The good news is that the kidney doctors do not think this problem was due to kidney damage.  They think it was strictly due to the amount of vomiting he did and the fact that he wasn't eating anything for so long.  The vomiting has stopped...thank God.  We are still having them give him anti-nausea medication around the clock because we don't want to take any chances.  Unfortunately, as soon as he checked in to the hospital, diarrhea started.  This is probably due to the chemo or the electrolyte replenishment.  They have cultured his stool and everything is coming back fine.  It's already a problem because diarrhea is another way to lose electrolytes, but it really became a problem yesterday afternoon when Nate started rolling up in a ball in pain and moaning and crying.  I really scared and worried me at first.  I spent most of last night crying with worry.  After several talks with doctors and after paying really close attention to Nate's behavior, it seems that it must be stomach cramping from the diarrhea.  I'm praying that the pain and diarrhea will stop soon for my sweet, sweet boy.

The chemo is still doing it's work on his body because his ANC (immune system), hemoglobin (measure of red blood cells) and platelets are still dropping.  He gets shots every morning to help his ANC.  He got platelets on Tuesday at the clinic and got blood today.  Hoping that his ANC will come up tomorrow morning instead of continuing down and that his platelets will increase also, so that he doesn't need another platelet transfusion.  Then last night, he started to teeter on the edge of a fever, and again today during his blood transfusion.  It's important that he doesn't get a fever now that his ANC is low, because that will mean they have to start a whole new round of tests and start him on antibiotics and will delay his homecoming even further.

Nate is eating little bits here and there, but not a ton.  It seemed he was eating much more before they started the IV food (called TPN), even though he wasn't feeling great.  There is some controversy over whether or not the TPNs cause patients to not want to eat, but I really believe that it is decreasing Nate's appetite.  It also doesn't help that he is on a GI upset diet which means no dairy, and dairy is pretty much his favorite food group.

Nate is super tired and gets drained of energy quickly and is sleeping a lot.  When he is up, he is feeling pretty good and is acting more like his normal, goofy self...as evidenced by the photo above.  It's very important to us that we get him as strong as possible, as quickly as possible for round 4 and then get him through rounds 4 and 5 as strong as possible to prepare for surgery.  We don't have exact dates yet, but it looks like we will be heading to New York around November 7th for surgery.  Sometimes, it's scary how quickly everything seems to be moving by, but really I just want to get my baby through these treatments as quickly as possible.  I want him to be running and playing and being a kid again.

Overwhelmed

Playing with Playdough that a dear friend brought over for him. One of the few times he perked up while he was home.

So, today was a doozy.  It began with jumping out of bed at 6:30am to the sound of Nate starting to throw up.  I ran to his room in time to coach him through some gagging.  Chris was in the shower and comes in to Nate's room shortly after, hunched over in pain...soon, rolled up in a ball on the floor in pain.  I knew immediately that it was a kidney stone because he had one when I was pregnant with Ellie and I remember the pain he was in.  He apparently had been up for a couple hours trying to will the pain away and not mess up the plan we had for the day.  I quickly rallied our troops.  Papa took Chris to the ER, Lizzy came and picked up Ellie, Grandma came to take Wes to school, and Lou Lou came with me and Nate to the clinic.  Happy to report that Chris felt much better after they gave him morphine and by the time he got the xrays and CT done, the stone had finished it's painful decent in to the bladder.  He is doing fine.

Nate was pretty much the same as he has been, but seemed to perk up a bit when he got to see all his sweet friends (nurses) at the clinic.  They drew his blood...then the bad news started.  His platelets were low.  Ok, pretty much expected something like that.  His electrolytes were also dangerously messed up.  His sodium, potassium and phosphorous were extremely low.  If the sodium gets too messed up it can cause seizures, the potassium can cause heart problems.  He needed this to get fixed.  At first we thought they were going to put an NG tube in and send us home with a solution of electrolytes and some nutrition to put in the tube. The doctors had their morning meeting and decided that Nate needed to be admitted to the hospital.  The thing I was dreading.  I have mixed feelings.  On one had, I of course want Nate to be safe and have all the care he needs.  On the other hand, I hate the hospital.  I just want to be home and be a Mommy to all 3 of my sweet, sweet kids.  It kills me that I don't get to spend the time with them that I so desperately want to.

So, we hung out at the clinic all day and Nate got fluids and platelets.  Then we checked in to the hospital and they will watch him closely and make sure his electrolytes are correcting.  Now, why were his electrolytes so messed up?  We won't know completely until the kidney doctor sees him in the morning, but they think the chemo did some damage to his kidneys, on top of the fact that he was vomiting so much.  The damage should reverse itself, but he will have to take an electrolyte solution until it does...then round 5 he will get hit with the same nasty drug again.  He may still need to get an NG tube.  That will be decided over the next few days in the hospital, depending on how he does.  We are trying to avoid the tube, but will of course do what we have to do.  Once we checked in to the hospital he seemed to have perked up quite a bit and was interested in eating Cheetos, so I'll take that as a good sign.  Lou Lou is nice enough to stay with him tonight, so Chris and I can get a good night of sleep.  We haven't had one in almost 2 weeks and Chris especially didn't sleep last night.  Then, all the grandparents will take turns with Nate at the hospital tomorrow while Chris and I work.  He will be in the hospital for several days at least...they have to check him day to day to see how he is improving before they will know when he will come home.

Tonight, I left the hospital and went to a "fundraising meeting" that our friend, Jen, set up.  I wanted to try and make it to the meeting to answer any questions people had.  I walked up to that Starbucks and see all the sweet people gathered inside to discuss helping my little boy and my family.  I immediately started crying.  My day was fairly overwhelming, with all the stress we had been through, but that's not why I feel overwhelmed.  I feel overwhelmed with love and support.  Our day began with all of our family swooping in and scooping us up when we needed it most and ended with a beautiful group of family, friends and friends of friends all taking time out of their busy lives to help us.  So...many...people.  When Nate was first getting diagnosed, I dropped to my knees, sobbing, repeating over and over again, "I can't do this".  Well, I was right...I can't do this...alone.  To everyone in our family, to everyone at that meeting tonight, to everyone who takes the time to make us a meal, send a gift, write a note, or email, or blog or Facebook comment, to donate or help raise funds, who says a prayer, gives a hug, or tells Nate's story.  Really...every little bit of it means so much to us.  On days like today, when I feel like I got slapped in the face again by cancer, all the people around us remind me that I CAN DO THIS.  I can be strong for Nate, and get him through this.  Thank you.  I love you all more than you know.

This is what childhood cancer looks like...

I'm sorry if this picture is too sad for you to look at. Imagine how I feel...this is my child. Imagine how he feels. The treatment is doing this to him and we have no choice. This is his only shot at life. No baby should have to go through this...ever...and I'm mad. I'm mad because I didn't know, and neither does most of America. Here are the facts about childhood cancer.

•  Every school day 46 children are diagnosed with cancer.
• Sadly, over 2,300 children with cancer die each year.
• 1 in 330 children will have the disease by age 20.
• Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
• Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.
• 80% of children have metastasized cancer at the time of their diagnosis. At diagnosis, only 20% of adults with cancer show evidence that the disease has spread or metastasized.
• Detecting childhood cancers at an early stage, when the disease would react more favorably to treatment, is extremely difficult.
• Cancer symptoms in children – fever, swollen glands, anemia, bruises and infection – are often suspected to be, and at the early stages are treated as, other childhood illnesses.
• Even with insurance coverage, a family will have out-of pocket expenses of about $40,000 per year, not including travel.
• Treatment can continue for several years, depending on the type of cancer and the type of therapy given.
• There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
• The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
• The American Cancer Society spends less than 70 cents of each 100 dollars raised on childhood cancer.

What Causes Childhood Cancer?

• Every family is potentially at risk.
• In almost all cases, childhood cancers arise from non-inherited mutations (or changes) in the genes of growing cells.
• As these errors occur randomly and unpredictably, there is currently no effective way to predict or prevent them.
• Most adult cancers result from lifestyle factors such as smoking, diet, occupational hazards and exposure to other cancer causing agents.

Cancer Research Funding

• Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
• Pediatric AIDS receives 4x the funding that childhood cancer receives.
• In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.

Most drugs used for childhood cancer treatment are over 20 years old and were developed to treat adult cancers.

Cancer treatment can cause serious side effects that often last a lifetime.

These kids need effective, less toxic treatments. They need a cure. So, why is childhood cancer so grossly underfunded? Are the kids just too sad to think about? Do they not have a voice?

I used to see the St. Jude kids on the TV...or I heard stories of a friend of a friend who's child had cancer. I gave money here and there, but why didn't I do more? I didn't know...I didn't think it could happen to my child. Well it can, and it did. So please, do something without it slapping you in the face too. Use Nate's pain and the pain of every other child fighting with all their might, as your motivation. I know most of the people reading this are now aware...go out and make your friends aware too. Many of these children are too little to ask for help. They need our support and our dollars, so they can have a chance to grow up and live the life they were meant to live.

Nate is not doing well. Every time we think we're starting to turn a corner, we aren't. He's keeping water down, but not much else. As you can see, he's probably lost all the weight he worked so hard to put on...I'm too scared to weigh him. He barely has enough energy to lift his head or talk. We called the on call Dr this weekend and were assured that this is fairly normal. As long as he's keeping fluids down, he's doing ok. We have an appointment at the clinic in the morning. We'll see what they say when they see him. Chris and I are not doing well either. We're mentally and physically exhausted. I'm having some major stomach problems...maybe it's sympathy pains. Please pray for us. Please pray that Nate will start doing better soon, so we can have a bit of a break before they hit him with round 4. Please pray that Chris and I can continue to stay strong and positive. I think we are doing a pretty good job, especially around the kids, but it's not easy.

Perspective

I wish I could report that Nate is back to his old self...he's not. He's getting better, but not there yet. He is vomiting less and is drinking and keeping down a good amount of water. He still has little interest in food but will ask for things every now and then...they usually come back up. His energy level is nil. Who can blame him though? He hasn't had any real food for almost a week and he might need a blood transfusion (we'll find out Tuesday). It's all about baby steps right now. First he keeps down fluid, then food, then he gets his energy back. My poor baby boy. He doesn't deserve this, no one does really, but especially not a child. Yesterday, he should have been out in the backyard running, climbing and sliding down the slide with his brother; not slumped on the couch trying to keep his water down.

I'm working this weekend which is hard. All I do is think and worry about him when he's like this. I know Daddy's got it under control, but I want to be there by his side, making sure he's ok.

This weekend, our whole pharmacy is moving to the front of the store. We also lost our technician a few weeks ago and our new one hasn't started yet. This would normally be enough to send me over the edge with stress. Now it's just a blip on my radar. "What? I have to work 12 hours by myself? Ok. Oh, we have to move the whole pharmacy to a new space? Alright.". These things that would have been such a big deal are really nothing in the shadow of my child having cancer. Not that life's little stresses aren't still there, but I hope we can at least take from this experience that we shouldn't "sweat the small stuff". Enjoy life, love your friends and family and let the little stuff slide. In the grand scheme of things, they really don't matter. I hope I can carry that idea with me when all this is over.

Gut Wrenching

I was planning on making a collage of photos from this hospital visit and putting it with a cheery post about round 3 being done.  I'm just not feeling it.  I hope to write that post in the next few days, but right now...round 3 is not done.   Sure, the poison finished going in to his body on Tuesday, and my mom got to bring him home for us yesterday while we were at work...but this round is not over.  Nate is not doing well...and it kills me.  My world is black and dark.  He's thrown up more times than I could possibly count and he has nothing in his stomach, so it has been the most awful dry heaving I have ever witnessed.  He hasn't eaten since...gosh, I don't know...what day is it?  He has had little to no interest in drinking either and what little sips he does take, come immediately back up.  He finished getting IV fluids yesterday at noon...if this isn't better by the morning I'm probably going to have to take him to the clinic or hospital to get some more.  He has no energy at all.  No energy to run and play, no energy to walk and barely enough energy to sit up or even talk.  It's really indescribably awful.  This is not my active, mischievous boy.  I just want to make him better...make it all go away.  I don't remember it being this bad with round 1.  My mom and Chris say that it was this bad for a few days.  Somehow this makes me feel better...I guess because I know we got through it.

We may have turned a corner this afternoon.  He woke up from a nap at noon, I gave him anti-nausea medication and offered him a popsicle, which he ate, then threw up 5 minutes later. He was interested in eating ice chips when they were offered and kept it down for a bit, but then threw up at 3pm.  I gave him more medicine and laid him down for a nap.  He woke up about 2 1/2 hours later, sat up and started talking about water, pulling water sippy cups from the side of his bed and drinking them.  This was the most animated I had seen him all day and the first time in several days that he drank anything without our prompting.  He then asked for chips...BBQ chips...that he'd seen Wes eating earlier.  I offered him ice chips instead.  Over the next several hours he started asking for different types of food and I think he ate a 1/4 piece of bread, a mini popsicle, a spoonful of applesauce and some cheese...and has kept it down!!  He is now sleeping and I am praying so hard that he is done throwing up for this round and can start eating and drinking tomorrow and building his strength.  Mommy can't take much more.

This just sucks

Really, there isn't anything that doesn't suck about cancer. How is this our life now? Wasn't it just 2 1/2 months ago that our family was enjoying a lovely trip to San Diego and our biggest worry was that Jaime might go in to labor while we were gone? Did I appreciate my life enough? I think I did. Maybe not though. Did I take our happiness for granted? Maybe just a little...but really, not much in life has come easy for me, I've worked and struggled for most everything I have, so I feel like I appreciated the life we had. I thanked God every day for my family and especially my children. I really don't think I took them for granted. I've always only wanted to be a mom and after struggling with infertility and finally getting pregnant with Wes, I always felt like I appreciated motherhood that much more. Every night I kissed and snuggled my babies and told them how important and special they were to me. So, why me? Did I not do enough to help children with cancer? Well, I know for a fact I didn't, but it's not like I was totally ignorant. I get mail from several different children's cancer organizations, not because Nate has cancer, but because we gave to them long before any of this happened to us. In the few months before we knew anything was wrong with Nate, I was working on some kits to give sick kids something to do during those long hours in the hospital and clinic. I was doing something. Sure, it wasn't enough, but how was I to know that?
You'll have to forgive me, I'm feeling sorry for myself today. It's just been one of those days. The forth day of chemo has built up on Nate and he's throwing up about every hour, though he doesn't have anything to throw up but stomach acid because he's completely lost interest in eating or drinking. I'm not even going to bother ordering him dinner. We found out this morning that we will not be coming home tonight because Nate needs 24 hours of IV fluids after the last dose of chemo. I want what's best for him...but they could have told us this yesterday, when the Dr told me he was coming home tonight. Once again, all of our plans have changed...what else is new. I'm also having a problem with my own Drs office getting my thyroid medication. They want me to get a blood test. I understand this, but really, when exactly am I supposed to do that? Not to mention the fact that I haven't taken my medicine consistently for the last 3 days, let alone the last 4-6 weeks (which is how long you need to take it to get an accurate blood test). I'm already not eating right or exercising...take away my thyroid medicine and I'm sure my energy and mood will just be spectacular (that's sarcastic). The medical assistant on the other end of the phone, says in her sing songy, happy voice "I understand but there's nothing we can do for you". Really?!?! You understand?!?! I don't think so! I totally would have punched her if she was in front of me. Ok...enough feeling sorry for myself [pulling up boot straps]. Tomorrow's another day...and Nate gets to come
home tomorrow.

Treatment Options

Many of you have been asking about New York. When we are going and why? Well, the short answer is...we aren't sure yet. I will try and explain all of the information we have floating around in our heads as best as I can. If we stayed in Phoenix for all of Nate's treatment, this is a simplistic breakdown of what it will look like.

Surgery (done)

Chemo Round 1 (done)

Chemo Round 2 (done)

Stem cell harvest (done)

Scans (done)

Chemo Round 3 (receiving now)

Chemo Round 4

Chemo Round 5

Scans (though these could possibly be done earlier)

More surgery if necessary

Chemo Round 6

High dose chemo and stem cell transplant

Radiation...probably to the abdominal area (I think this is when this happens, though I'm not positive)

Antibody treatment (up to 6 rounds depending on how many he tolerates)

So, where does MSKCC in New York fit into the picture? 

First, I'd like to help everyone understand the importance of the decisions we are making for our little boy. We are very confident that Nate will beat this disease, but it is not easy and we have to consider the realities of this disease as we are deciding on the best treatment for Nate. High Risk Neuroblastoma is a nasty, aggressive cancer. Our Dr., who is not that old, says that he remembers a time when almost all of the children diagnosed with this cancer died. They've made great strides in recent years and research is constantly moving forward...6 months from now there could be a new, major development. What percentages of beating this are we looking at? Our Dr. says that every child has a 100% chance of beating this, and we wholeheartedly believe that! Not only as a mom to a very special, strong little boy, but also as a pharmacist, I understand that percentages are just percentages and mean nothing to the individual patient. With that being said, Chris and I are still considering all the facts when making our decisions. With the standard treatment of 6 rounds of chemo, and a stem cell transplant they give high risk patients a 50% chance of survival (I've seen numbers online as low as 20-30%, but our Dr says the latest research shows about 50%). Adding antibody therapy at the end of treatment is shown to increase survival by about 5-20%, depending on how many antibody treatments the kids can get through, up to 6 treatments. Radiation and successful surgery also increase the rate of survival.

So, the numbers aren't too bad really, but the treatment he has to go through is rough...really rough. The side effects are common and harsh. Heart failure, kidney and liver damage, hearing loss, trouble with math, short and long term memory problems, infertility, rotten teeth (even the adult teeth), secondary cancer later in life, and even possible death due to infection are just a few. Neuroblastoma survivors are also shown to have lower rates of marriage and lower paying jobs. Nate has always been a tall, smart, handsome, healthy boy...it kills me that he only has had a chance to be that for 2 short years and everything he is going through now, will change the course of his life forever. I know you're going to say (and I have said myself) that this IS the course of his life, we just didn't know it until now...and I know this. Still, when you are snuggling your perfect little newborn you want only the best of everything for them. Nate is a curious, precocious 2 year old who had a gorgeous mop of wavy red hair. We used to always talk about having to chase girls away from the house during the boy's teenage years, with Wes's blue eyes and Nate's touchable hair. I've always said that I can't wait to see what kind of adult Nate will be because of his independent and playful spirit. I can't handle the thought of him struggling in his life because of these treatments we are putting him through.

Chris and I are trying to figure out a treatment plan that will get rid of the cancer completely and leave Nate with the least amount of side effects...which is where MSKCC comes in. They do things a little differently there. They have Drs there that are neuroblastoma experts, they also have the absolute best neuroblastoma surgeon.  Of the about 700 cases diagnosed each year, they treat about 250-300 of them...PCH treats about 10-15. That doesn't mean PCH doesn't know what they are doing. They follow a protocol from Children's Oncology Group (COG) which is a network through the rest of the country that treats the rest of the kids that don't go to MSKCC. MSKCC has found in their research, that a stem cell transplant is not necessary....they haven't done them for 10 years. Their studies show that they get the same results (percentages) as the COG protocol, but they skip right from chemo to antibody treatment. They also do antibody treatment for longer. COG (and PCH) will do up to 6 treatments. MSKCC will keep doing them until the child can't tolerate it any longer.

So, are we going to New York and when? Chris and I had decided pretty quickly that if Nate needed more surgery to remove either of the 2 remaining spots, we would go to New York. The surgeon at MSKCC has been described as "walking on water" by everyone I've spoke with...including Nate's oncologist. Apparently he doesn't even take credit for his own skill...he says that God gave him the gift to remove these tumors. This is the man we want taking care if our little boy. It looks like we will indeed be going to MSKCC for surgery after round 5, probably sometime in November. Our Dr is starting to get this in the works for us.

We have also considered skipping the stem cell transplant and just going straight to antibody therapy in New York. If we did decide to skip the transplant...Nate would not be able to get antibody at PCH because their protocol requires the transplant to get the antibody. The stem cell transplant is no joke. Basically, they give Nate the highest amount of chemo that they possibly can without killing him. It wipes out all of his bone marrow and immune system. Then they rescue him with his own stem cells. It is so much chemo that if they didn't give him his stem cells back, it would take so long for his body to recover (if it ever did) that he would die of some sort of infection. Because they can rescue him though...it will take about 4 to 6 weeks. He will be in total isolation, in the hospital for 4 to 6 weeks, constantly being monitored and the Drs will treat each complication as is comes. It is possible to die from the transplant, but their success rate of getting patients through it is very good...above 90%, I think.

This decision is much more complicated for us. Every Dr has told us that whatever decision we make will be the right one, but I honestly feel the opposite. If we don't do the transplant and the cancer relapses...I will never forgive myself. If we do the transplant and Nate suffers devastating long term consequences...I will always wonder if we should have skipped the transplant.  Things can always change, but at this point, I think Chris and I have decided to do the transplant. Whatever long term consequences Nate experiences, we can figure out a way to deal with it. We can not, however, deal with the cancer winning and losing him. This cancer likes to relapse and there is currently no treatment that is known to work for relapsed neuroblastoma. We need this to go away and stay gone...forever! At this point, after speaking with many Drs, we feel like we need to hit this thing with guns blazing.

Now for antibody treatment. We can stay at PCH for antibody treatment, or go to MSKCC. Simply put, Nate will be injected with antibodies that go in, find any remaining neuroblastoma cells and force them to mature and die. The infusion is very painful and eventually the body will make antibodies to the antibody and you have to stop treatment, but the more treatments you can get them through, the better. The more chances the antibody has to find every last neuroblastoma cell. The treatment also has no known long term side effects. MSKCC has been doing this for over a decade and they are the experts. They use a mouse antibody and are currently trying to humanize it, which will cause less rejection. I heard they might have just gotten approval
for this. PCH uses some sort of manufactured human antibody that causes less rejection but worries me because it is not the mouse antibody that MSKCC knows works well. We need to do much more research on exactly which antibody PCH is using. The other thing to consider is that MSKCC gets ALL of their kids through 6 treatments and sometimes many more...they just keep going. I think the most they've gotten up to is 2 years of treatments. Our Dr said they've been lucky and have gotten all of their kids through all 6 treatments at PCH (that's not necessarily the case throughout the COG...sometimes they only get 3 or 4), but I recently figured out that PCH has only been doing antibody therapy for less than a year and have only got maybe 3 kids through it. Three!!! Holy crud. I don't think that's good enough numbers for us. So as of right now, we are strongly considering going to New York for Nate's antibody treatment. It would be something like 1 week in NY, 3 weeks home for 4 treatments, then 1 week in NY, 8 weeks home indefinitely (probably up to 2 years).

It really is so much to consider.  I think about it constantly and it weighs very heavy on me. How are parents supposed to make these decisions for their child? If only we could see the future...but we can't. So, we're taking these decisions one step at a time and trying to prepare for any possibility. We are going to do whatever we have to, to get Nate to the other side of this as strong and healthy as he entered it but it's not going to easy. We will absolutely go to New York of that's what we determine will be best for him. Unfortunately, it will be financially and logistically difficult for us. We are very fortunate and are thankful every day that we are in a position to make these kinds of decisions for Nate (many families do not have any financial means to explore other options for their children), but we have also worked very hard for everything we have and would be devastated if we had to lose our house. So, thank you to everyone who's planning fundraisers or us. It means the world to us and we can't wait to pay it forward one day to other families in need.

We are doing as much research as possible and praying and praying. We may not know the "right" answer, all we can hope to do is figure out the "best" answer for Nate. So far, things seem to be falling into place.

Pain

Where was I 10 years ago today?  I had just graduated pharmacy school a few months prior and was living with my mom and aunt, preparing for my wedding in 2 months.  I was asleep when I received a call from my college roommate to turn on the TV, "the world is ending".  I turned on the TV to 2 burning towers.  My mind immediately raced to our good friend Brian, who was going to be a groomsman in our wedding and  who lived in New York and worked downtown somewhere.  I quickly called Chris and asked if Brian worked near the World Trade Center...Brian worked IN the World Trade Center.  We soon found out that Brian was late to work that day.  He even managed to make it to our wedding 2 months later.  Going to work later that day was a totally surreal experience.  The roads and the stores were empty.  Everything was uncertain.  We are thankful every day that we don't have a story of losing a loved one that day...unfortunately, there are far too many that do.

I woke up this morning on the 10th anniversary of September 11,2001, thinking of pain.  I've experienced much pain in my 33 years.  The pain of drug and alcohol addiction in my family, the pain of an uninterested father, the pain of infertility, the pain of loss, depression, obesity, disappointment, abandonment, isolation, regret...and now the pain of a sick child.  Still, there is so much more pain that I have never experienced, and hope to never experience. Much like we all felt in those first days, weeks and months after September 11, 2001, everything is uncertain for us now.

Why is there so much pain in the world?  Original sin?  So that we appreciate the joy?  To test our faith?  Why?  Of course I have no answers, but for now I'm trying to focus on the blessings.  For every pain I've experienced...there is always something that is worse, and something good to come out of it.  Sure, my child has now been given a percentage of a chance at life. Seven years ago, I wasn't sure if I was ever even going to have a child.  Some children die in accidents and have no chance at life, we are thankful for the chance to fight.  There are also the little blessings along the way.  The new tower at PCH with the big, private rooms, the fact that I went part time at work 2 years ago and we don't rely on my full time salary, our trip to San Diego in June which we have ALWAYS taken at the end of July or beginning of August and would have been missed if we didn't move it up because Johnny was due to be born, so many little things along the way.  Then of course there are the big things, finding the tumor fairly early the way we did, Nate's good response so far to therapy and the love, support and generosity of our family, friends and complete strangers.  Almost daily, I am brought to tears by the kindness of those around us.  Maybe the pain is there, so that we can appreciate the joy.  That really sucks though.  Why can't we just see the joy?

I don't think the joy will ever replace the pain...but maybe, it can dull it just a little.  So, for now I will try my hardest to focus on the blessings and the joy.  The only other option is to give in to the pain and give up.  Sometimes it feels like I might just do that...then I pull myself up and remember that it is NOT an option.  We must continue on and fight.  Thank you to all of those who fought on September 11, 2001 and every day that has followed.  Thank you to those who lost their lives that day and to those who survived to tell about it, to the fire fighters, police officers, soldiers and family members to all.  Thank you for reminding me today to keep fighting.

Round 3 Begins

After several urine samples, no one is quite sure where the blood came from, but it was decreasing with each sample and no infection was detected, so they started the chemo this morning. The whole blood in the urine thing makes me a little nervous though. Yesterday after the procedures, Nate had two different instances where he grabbed his crotch, pulled his knees to his belly and screamed, "Owie, my penis, my penis hurts!". Then it was over and it hasn't happened again. So strange. I couldn't see anything wrong with his penis or penis area, but they found blood in his urine. I can only figure he must have had some small cut or something and it burned when he peed, now it's healing and not bleeding or hurting anymore?? This is why I have gray hair.

Chris was with him all morning and I relieved him in the afternoon to go to a work function. Nate was taking a long nap (knocked out from the antinausea medicine) when I got there. I was exhausted and laid down to close my eyes for a second, when I heard Nate start throwing up. It happened to be exactly time for another dose of antinausea medication...I guess Nate knew this. I got him cleaned up, he got more medicine and was good to go.

We watched some toons, played in the play room and wandered the halls. We've decided that we can not leave the room without our hats. Tonight, he chose his "snow hat" and let me wear his bear hat. He ate a big dinner and a red "posisicle" for dessert that I hope Chris won't be cleaning up in the middle of the night. I tried getting him settled in for bed but he was literally jumping on the bed, so we put on our hats and headed out for a late night patrol of the hallways...complete with marching. I guess I finally wore him out because he fell asleep right before Daddy came back for his sleepover.

I also found out that this round of chemo is actually only 4 days. So, Nate will still be able to come home on Tuesday even though chemo was delayed a day. This is good news, not only because we love to have him home, but also because it makes our Wednesday less complicated with my long work day. Yay for more good news!

Facebook

Our friends are using Super Nate's Facebook page to keep everyone informed about fundraising efforts for Nate's care...and eventually for research and to help other families.  Please take a second to "like" Nate's Facebook page.

http://www.facebook.com/SuperNateDinoffria

They have also made a twitter account...though I admit, I don't totally understand twitter.  If you prefer twitter, you can follow him there.

http://www.twitter.com/SuperNate_D

Thank you to everyone for your love and support!!

For Ronan

In May, I was up late one night surfing the Internet and stalking Facebook. A high school acquaintance had posted a link to her family's blog and I clicked over to read her post. I scrolled back and read a few past posts, including one where she showed her son releasing a balloon for a little boy named Ronan and put a link to Ronan's mom's blog. I clicked over and read the most raw, real, heart wrenching story I had ever come across. Ronan was a beautiful little boy who was taken by cancer in May, a few days before his 4th birthday. My family was all asleep and I wept as I read his mother's brave and beautiful account of sweet Ronan's last moments on the earth. I then went in to all of my babies rooms, my face still wet with tears, and kissed them all, thanking God for their health and praying that he would continue to bless them and keep them safe.

Then...July 7th came, and our world exploded. In the first few days of diagnosis, when the word "neuroblastoma" was being thrown around, this little boy's story started to gnaw at me. I knew it wasn't a good idea for me to start searching the Internet, because I was still in shock...but I felt like I had to know that Nate had something different than Ronan had. I found Ronan's blog and there it was, staring at me...NEUROBLASTOMA. It actually ended up being a good thing because Ronan's mom, Maya, had a bunch of helpful links on her site for parents of kids with this disease. I wanted to write to her but decided against it. It had only been 2 months since Ronan's passing, I didn't think she needed to be burdened my story.

I thought about her and her sweet boy constantly for the next couple months and finally decided that I wanted to contact her to let her know that she and Ronan had inspired me to cherish my family more...even before we knew that the same monster was growing inside of Nate. I sent her a short email and almost immediately received a response from her asking how she could help us. I am in awe of the strength, bravery and compassion Maya has shown. She is living with a deep, searing pain every single moment and she is still willing to reach out to help another little boy and his family.

I met with Maya last week to seek some advise about this path we are on...also to get and give a hug. We talked, cried and held hands as she gave me a number of tips that will make this process smoother for us. She said she would be there for us, no matter what we need.

Maya has a foundation, The Ronan Thompson Foundation, and she and her "mafia" are raising money for research and to help other families. I really feel like Maya will make a real difference in this disease. She is determined to fund research that will find a cure and I believe she can do it.

Ronan was a beautiful little boy with haunting blue eyes who she describes as full of life and mischief. She says that he was totally obsessed with Star Wars and they always used to say "I love you to the moon and back" to eachother. I met with Maya at the end of last week. Then, this weekend Nate wanted to watch Star Wars and play light sabers...a little strange because as much as Chis and I love Star Wars, neither of our boys is way too interested in it. Nate has also been OVERLY mischievous....I've been tearing my hair out a bit. Then, Tuesday morning Nate dug through our DVDs to find Star Wars and insisted on bringing it in the car to take Wes to school. On the way home from dropping Wes off, Nate hollered at me to turn the radio down...I did..."Mommy, I love you to the moon and back", he said. I almost drove off the road. This is something I have said before...mostly with Wes...but it has never been a "thing". Maybe it's Ronan, maybe it's not...but I feel him around us, helping Nate fight this cancer, helping him through...and it makes me smile.

This morning, I found out that Maya is nominated for a blog award on Babble.com for moms that are changing the world. She is in second place and the winner receives $5000. Maya said that if she wins, she will donate the money to Nate!! It would be such a blessing to us as it would help to alleviate some of our financial burden. I am so blown away by the generosity of everyone around us. Today, Maya wants to help us "cure" our little boy. Tomorrow, I swear I will help her raise the money for a real cure.

So please, click on the link below and go to Babble to vote for Maya Thompson! Post it on your Facebook page and ask your friends to vote too!

http://mom.babble.com/mom/mominations/mominees/charity/maya-thompson

Results

Thank you to everyone for your thoughts and prayers.  Keep them coming...because they're working!  Nate's procedure went well.  It took a long time, but my mom and I managed to pass the time reading magazines and chatting.  They called us back to recovery and he woke up slowly but was soon his full-on goofy self.  The nurse asked if he always acted this way after anesthesia.  I said, "No...he just ALWAYS acts this way".

The Dr. called me with most of the results a few hours later.  You may remember that Nate had two areas left behind after tumor removal. One along the edge of his liver, and one down between his kidneys that I guess was along his aorta.  The spot along his aorta is GONE!!!  That's right, GONE!  The Dr. says he can see scar tissue where it used to be, but it is not lighting up on the MIBG scan (the scan specific for neuroblastoma).  The area on his liver is a little more complicated.  I guess after he had his initial surgery to remove the tumor, his liver was full of fluid, which is normal after major abdominal surgery.  On his last scan, the area on the liver looked like it was wrapped around the fluid filled area of the liver.  The fluid is now gone from his liver which is good...and expected...but the shape of the tumor has completely changed in to a ball.  The shape has changed so dramatically that it is impossible to know if the area has shrunk and is responding to the chemo.  The Dr. will be sending the scans off to Memorial Sloan Kettering Cancer Center (MSKCC) in New York to get their opinion, but he is pretty sure it will just be an opinion...not fact.  If he had to venture a guess he would say that it had indeed shrunk...but it's just a guess.  The good news is that the area is operable...he thinks it will indeed have to be removed with surgery.  The surgery won't happen until after round 5 of chemo, maybe some time in November.  Chris and I had already decided that we want to take Nate to New York if he needs any more surgery.  We are forever grateful to the surgeons who removed most of Nate's tumor in July, but there is one Dr. in this country (maybe the world), who is the absolute best Neuroblastoma surgeon...and he's in New York.  We want our baby boy operated on by the absolute best.  We want this spot gone...100%.  We have not received his bone marrow biopsy results and don't expect to until early next week, but we expect nothing but clear bone marrow.  It was clear before, there is no reason why it wouldn't still be clear, so we are really not worried.  The final test result we got back was the ECHO (measure of how healthy his heart is).  They check this because chemo can damage the heart and he must have a strong heart to continue treatment.  The Dr. said they give it a score based on a number of different factors and the top score is 70.  Nate had a 64 prior to chemo treatment...and had a 65 today.  Leave it to Super Nate to use the poison to make him stronger.

He is having a sleepover at the hospital with Daddy tonight, waiting to start chemo.  They found some blood in his urine and have to determine where it is coming from, especially if it is an infection, before they can start the chemo. Hopefully, he can start tomorrow.  It's a little frustrating because we don't want to delay treatment any further, but we also want to make sure that Nate is safe.  Please pray that they will be able to figure out where the blood is coming from and resolve it easily, so he can start chemo tomorrow, and that this round goes smoothly.

Thank you so much to everyone who thought about Nate today, to those who prayed for him, to those who called, sent a text, wrote and email or wrote a note on Facebook or this blog.  Whether I know you personally or not, it means so much to us and to Nate, we all feel the love and support and could not do this alone.  There are twists and turns along the way, good days and bad.  I'm marking today in the "good day" column.  We'll take as many as we can get.

Recovery

All done with biopsy and scans. Having a snack and waiting to go to his room.

I Wish Tomorrow Wouldn't Come

Snuggled up watching movies.

I feel like I've almost been blissfully unaware for almost the last month that my baby boy has cancer.  Sure, he has a shining bald head and a tube hanging out of the middle of his chest, we spend most of our days at the clinic, there's medicine and shots to give, lines to flush and dressings to change, and I suddenly can visualize the germs on everything...but, we've been home.  We've been together as a family of five, eaten dinner together and snuggled into our own beds at night.  Nate has been feeling great!  He's sneaky and mischievous and almost too much for me to handle...and I love it!  Really?! How can this kid have cancer?!  Chris and I even discussed wanting to see the tumor.  It's so hard to believe that there was a killer growing inside of him.  The only thing that has been making him not feel well is the poison we are putting in him to kill the killer...so strange.

So...my bliss is being put on hold starting tomorrow.  I know we'll get back to it...hopefully sooner, rather than later...but it sucks.  I feel like I'm living a life in two different worlds.  One foot is in the "regular" world, where nothing on the outside has changed much.  The other is in the "cancer" world, where all of our lives are changed forever.  Sometimes I get a sick feeling in my stomach and have to think for a second about where this feeling of dread is coming from...oh yeah...Nate has cancer...and it's hitting us in the face again tomorrow.

We get to the clinic at 7:30am for a quick blood draw, then head over to the hospital.  Nate will be put under anesthesia for a bone marrow biopsy, scheduled for 9:30am, then he will be moved to radiology and handed over to another anesthesiologist and given a CT scan and MIBG scan.  He will probably be under for a couple hours.  Then, he will wake up and we will check him into the hospital to start chemo round 3.  He will be in the hospital for at least 5 days getting the chemotherapy.  This round is totally different drugs than he had the first 2 rounds, so we won't know how he'll handle them until we're in the middle of it. I'm cautiously optimistic that he will handle them fine.  It also helps that Chris and I have learned a bit about what makes him throw up and how to prevent it the best we can.

We need lots and lots of prayers tomorrow.  We know that Super Nate has been handling his treatments like a champ, but until we see the scan results we just don't know what's going on inside of his little body.  Handing my baby over to be put under anesthesia...and then having to wait for the scan results, is almost more than I can handle.  I feel like my insides are going to explode in anticipation.  I've heard it called scanxiety...I call it hell.  My mom is coming to sit with me while we wait...she's going to make sure I don't actually explode.  Please pray that the procedures go smoothly and the scans show a reduction (or maybe even disappearance) in the 2 spots that showed up in his last scans.  This poison better be doing it's job!

Gearing Up

 

 It's been so nice being "normal". This has been the longest stretch that we've been home since all this started and I've LOVED it. You never know how much you appreciate simple things like shopping trips to Target and Costco, going to the movies, lunch at the mall, going to church, having friends over...until your child is constantly in the hospital or their immune system is too weak to leave the house. I'll still take "stuck at the house" over "in the hospital" any day, but it's been so nice to have Nate's immune system strong this past week. We've taken advantage of it and done all of the above, and more.

The plan this week was as follows:

Wednesday (Chris took the day off work) : MIBG injection (the radioactive element they use to look for neuroblastoma), CT scan

Thursday : anesthesia for MIBG scan (the scan was scheduled for 12pm which meant that Nate couldn't eat breakfast or lunch...and Nate LOVES to eat)

Friday : anesthesia for bone marrow biopsy then check in to the hospital to start chemo

We had everything all planned, where we were all supposed to be at what times and who was taking care of the kids. Then I got a call right as I was about to leave for work this morning. The MIBG injection was not available today (I guess they have to get it from Canada and their shipment didn't get here), so everything had to change. Listen Cancer...I know you don't want me to plan anything...but, I have to make sure my kids are taken care of. So, I have to plan a little bit.

As of right now, we still don't have a concrete plan. Nate is due at PCH tomorrow afternoon (Thursday) for the MIBG injection and I plan on talking them into doing the CT scan. No one could give me a definite answer as to if he could get that done tomorrow, but I'd like to get as much out of the way as possible. Friday he needs to get the MIBG scan and bone marrow biopsy both done under anesthesia, but I have not yet been given a time. I'm hoping it will be early in the morning so that I don't have to starve him too long. Then, he will check in for chemo round 3. I'm also hoping the scan and biopsy will get done early so he can get started as early as possible on the chemo. The earlier in the day he starts, the sooner he can go home, 5 days later.

It's just so frustrating! I realize that Cancer now trumps all, in our life, but we do have jobs and other children to take care of. The hospital could help us out a bit. Chris took the day off from work, for no reason, and we're trying to save as many of his days off as possible for when we have to go to New York. The most frustrating thing, though, is that apparently the radiology schedulers and the bone marrow biopsy schedulers can not talk to each other! I've been asking (anyone who would listen) from the beginning if Nate could do everything under one anesthesia. I was told, after going back and forth for a week, that it couldn't get worked out and it would have to be on two different days. Somehow now, he'll only be getting one anesthesia. That's great, but why couldn't it have been scheduled that way from the beginning?!? He's going to have to get a bunch more of these scans and biopsies done through this process. I guess I better figure out how to navigate their scheduling.

Wake Up To Childhood Cancer

Hope

I can't wait until the day we can share Nate's story of hope.

http://www.azcentral.com/arizonarepublic/local/articles/2011/05/22/20110522perry-high-school-montini.html

Time

Seeing movies in the theater is one of our favorite family activities. Nate went to his first movie at 1 week old. Last summer, when Nate was 18 months old, we went to the Harkins summer kids movies every Friday morning and he would start squealing and clapping as soon as we pulled into the parking lot. This summer, Nate only got to go to the first 2 or 3 summer kids movies because cancer took over our summer. He's been asking to go to the "vovies" since that first hospital admission and we haven't been able to make it because his immune system hasn't been good enough, at the right time.

So, I promised Nate and Wes we could go see a movie tonight in the theater. Unfortunately, I promised this before looking at the movie schedule to see that there are only 2 kids movies playing right now and the last showing at all the theaters nearby was 7pm. The problem was that Daddy didn't get home from work until close to 6:30pm. We were really cutting it close on time. Chris didnt want to rush it and thought it would be easier to just rent a movie and make a special night at home, but I had promised the boys a trip to the theater and they were begging. So, we got our stuff together quickly, I whipped up a quick dinner and we were off to meet Grandma and Linde for the movie. It wasn't the easiest thing, but we got to the theater just in time for Spy Kids.

Nate loved the movie. He kept gasping and saying, "Wow", at all the special spy effects and laughed his silly, loud laugh at all the goofy humor. He also
enjoyed the preview and has chosen Happy Feet 2 as his next movie going experience. As we were leaving he told Chris, "Spy Kids was rearry good!". I kept thinking how glad I was that we went because both boys enjoyed it so much...and so did I.

The movie was about a villain who was speeding up time. As it turned out, he was actually trying to turn back time to spend more time with his father. Jeremy Piven delivered a sort of corny but rather poignant monologue about making the most of the time you have with people because you can never get that time back. Chris told me that Nate touched his shoulder right in the middle of the monologue and his heart almost exploded. That's exactly what we did tonight...we made to most of our time together. We are not going to sit around and wait for these cancer treatments to be over to live our life. We will take advantage of any time that Nate is home, healthy and feeling good. When he is not, we will make the most of those times too.