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.