Some Good News!

Things seem to move so slowly, don't they?  Dr La Quaglia has looked at Case's scans and wants to take Case's case to MSKCC Tumor Board, which is a meeting of the minds (oncologists, surgeons, radiologists, etc).  That Tumor Board is tomorrow afternoon.  They won't confirm or schedule anything until after they decide what to do.  So hopefully Wednesday morning we will know our game plan.

In the meantime we are tentatively penciled in for a consultation next Tuesday the 8th, with surgery to following in a few days.  We are planning on flying up this coming Monday and will stay until Case has recovered from surgery.  We are estimating two weeks, but as the last month has taught us, anything can happen!

Xavier's dad, Colin, has flown in from New Zealand to be a third parent while we go through all of this.  Colin and Graydon will come up to New York with us, as we can't bear to leave Graydon behind for that long!  While we wait around this week we are having fun and doing some projects.  Just hanging out.

But we do have some great news!!  Case has decided to let go of our finger and he is now walking on his own!!!  It is so wonderful!  It all started last Saturday night when we were at our friends', the Hart's, for dinner.  Case was standing in front of his cancer-pal, Brooke, and took two independent steps to her.  It was the first time that he decided on his own to walk...and it was to Brooke.  How sweet is that?  Love it.

Here are the two of them in the pool.  Kindred spirits.

A few days later he just let go and walked across the playroom to me.  Then the next day he did it some more.  And within a few days he was cruising!  He does not crawl anymore and is completely mobile, walking everywhere he goes!  Granddad took him on a two-block walk this morning and he did it all himself...no lie!  The bad thing is, I actually don't have one picture of it yet.

But here are some pictures of the boys playing at the Harts.  Case is the definition of a "water baby."

Graydon in every ounce of pool gear they had!

His smiles are the best!

I really love this baby. 

Sigh of Relief

Okay, so an update is in store and I can happily start it off by saying that we have a plan!  Hooray!

Today we met with Dr. Meghan Granger in Ft. Worth, who is a neuroblastoma expert.  I fell in love with her; she's great.  She was able to answer all of our questions and even some random ones that I've had for a long time.  But best of all, she reconfirmed our plans for surgery at MSKCC in NYC.  She said that if Case were her child no one would be allowed near him with a scalpel except for Dr. La Quaglia (pronounced la-qual-ee-ah).  She confidently said that he is hands-down the best neuroblastoma surgeon in the WORLD.

She recommended a biopsy with a "de-bulking" procedure.  She definitively said "do not let anyone touch his pancreas!"  I told her that we didn't have Dr. L's surgery plan yet and what if he came back saying he wanted to do the Whipple.  She said that would never happen, that Dr. L is conservative and "better than that."  She said that he will be able to open Case up and know right away just by looking exactly what he can do.  And, as a side note, it will not take him 20 hours to do it!  Yahoo!

A biopsy of the removed parts will be taken to see where the tumor is in the malignancy spectrum.  If results show that it is "differentiated" and maturing into benign cells (from neuroblastoma <bad/malignant> to ganglio-neuroma <good/benign>), then we can monitor from there.  That would consist of a scan 1 month after surgery, followed by scans every 3 months, and the urine catecholamine test every month to measure neuroblastoma levels.  If the cells are still in the "bad" range, we can follow up with a few rounds of chemo.

However it turns out, she was confident that Case would do great.  She spoke with a surety that he would be fine and would make it through this mess.  He is in the "intermediate" group and, fortunately, does NOT fall into the high-risk category that almost always relapses and has low survival rates. 

So we feel great!  And it feels great to feel great!  Dr. L is out of town later this week, so there is no reason for us to go up to NYC for a consultation now.  They feel that we can just schedule surgery and go up a few days early for appointments.  Right now, we are looking about 2 to 3 weeks out.  I felt a heavy load lifted when I realized we weren't going to be doing a last-minute, harried trip up to NYC.

Prayers are answered.  Heavenly Father has a plan for us all.  When we let Him guide us down those paths, our lives are easier.  Looking back at the tender mercies is always a treat!  Good night!

p.s. to everyone who has offered help in NYC with friends and contacts and whatnot, you all ROCK.  I don't know what we need right now, so hang tight until we do!

And the winner is...Surgery...probably

For those of you who check here often, I felt that I had to do some sort of update.  The last few days I have felt my head reeling and spinning with the influx of information.  Here is what has happened:

I met a wonderful woman whose son has neuroblastoma.  They have been battling it since 2005 and have learned pretty much everything there is to know about the disease.  They have sought out new, experimental treatments and have traveled far to make sure these treatments happen.  We had lunch with her and she has taught us so many things.  I am very thankful to her for opening our eyes.

I feel like last week I was sitting happily inside my little bubble of "following our protocol, doing what the doctors told us, feeling safe at our hospital."  Now I feel a huge feeling of responsibility in seeking and securing the best team and plan for my son.  That involves different treatments, surgeries, and hospitals spread all across the country.  And, new flash, I am not a doctor, so most of this stuff doesn't make sense to me anyway!

So besides all of that heavy weight on our shoulders, we have made some progress.  We are still meeting with the Cook's Children Neuroblastoma team in Ft. Worth on Tuesday, and at this point don't know their opinion. 

The Neuroblastoma team in Houston does not think that doing anymore chemo would improve the operability of the tumor.  In other words, while chemo may still kill part of the "live" tumor, it wouldn't shrink it, and the complexity of the surgery remains the same.  So we might as well safe our son the horrors of more toxic drugs and just go straight to surgery!

Arguably the best neuroblastoma oncologist (Dr. Kushner) and surgeon (Dr. LaQuaglia) are up at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City.  Dr. Kushner has agreed with Houston in saying that chemo does not help our situation.  He made this call based on written reports, but he will be receiving all of Case's scans on Monday and will hopefully be able to be more detailed in his opinion.

Dr. LaQuaglia will also be receiving all of Case's records this week and will hopefully be able to tell us what kind of surgery they recommend.  The Houston team is recommending a "de-bulking" surgery that would take out as much tumor as possible, but would leave the pancreas intact.  The last surgery they did like this took 20 hours.  Wow...I don't feel too good about that.

So tomorrow morning (Monday) we will hopefully be having some intense phone conversations with the folks at MSKCC in NYC in helping us determine when and for how long to come up.  Do we come up for a consultation and then come back up a second time for surgery?  Do we try to do it all in one trip?  This Tuesday will be 5 weeks since chemo and we don't want to wait more than another 2 weeks for surgery.  So then we have the complexity of travel to expensive NYC added to the craziness of trying to secure a plan for our son.  I will most definitely be calling the Ronald McDonald House in the morning!

Bottom line is: we are still thankful for our 2 beautiful sons who are currently, and unbeknownst to Case's tumor, enjoying life fully.  Are we completely stressed out?  Yes, but it will all work out.  Thank Heaven for the wonderful gift of family, friends, and a feeling of comfort through this all. 

Be thankful for your life, no matter what the craziness is.

And, oh yeah, Honey, Happy 8th Anniversary!  Maybe we can take a trip to NYC to celebrate our anniversary! ;)  We've packed a lot into these 8 years!  Wouldn't do it with anyone else.

An Empty Update

Still Nothing... These second opinions are taking their time coming in! Case is, obviously, our first priority, so it's hard to understand why he isn't everyone else's first priority. If we have learned anything with this cancer, it's that things in the medical world take FOREVER!

We will probably be meeting with Dr. Granger (neuroblastoma expert) in Ft. Worth at Cook Children's on Tuesday. Texas Children's Hospital in Houston was supposed to discuss his case today. We have spoken with some people at Memorial Sloan Kettering Hospital in NYC. There is supposedly a miracle worker up there, Dr. LaQuaglia (" Dr. L") who is a master surgeon with neuroblastomas. We are also waiting to hear from a contact at St. Jude's in Memphis to see if we fit into their "out of the ordinary" type of patient. So the balls are rolling, just slower than we'd like.

I'd like to think that it is because his case isn't a severe one. The scary side of my brain says that it's because everyone wants to confer with each other before anything is said to us because there's something crazy going on. Either way, we are learning patience in the meantime.


Meanwhile, I am pretending that we are normal. It's nice not going in for labs twice a week or anticipating the next round of chemo. Case is almost recovered from his Hand, Foot, and Mouth virus. It caused him to have a fever last Thursday and Friday, which require us to go into the clinic for an infusion of antibiotics. They do this just in case the bacteria is in his port. The poor guy has little red bumps all over his hands, wrists, toes, and ankles. But like always, he's a trooper! I am just so glad that this happened after his blood counts recovered from chemo. Otherwise, that would mean a 2-week in-patient stay for us.

The little guy really likes to feed himself these days

We think it's pretty cute. He looks like a little man.

Still cute...even after cleaning up messes like this everyday! Who wouldn't let him have his fun?

And his cute brother, just because.

Update

So we don't have much of an update, but surgery for this Wednesday is cancelled. We will be getting our expert second opinions next week, so in the meantime we are just "hanging out." The second MRI Case had on Tuesday showed that he would definitely need a Whipple procedure at this point. The general consensus between his oncologists here is that we would do two more rounds of chemo and then reassess with more scans. Not excited about that endeavour, but it could be worse. The hope is that more chemo would shrink the tumor away from the pancreas. I think he'll end up needing a Whipple after more chemo anyway, but we'll try anyway!!

Update...Read All About It!

So usually "no news is good news," right? So when your son's oncologist calls you before your scheduled appointment and even gives you her personal cell phone number to talk about results, it usually makes you want to throw up, right? Yeah, well, shockingly enough, I didn't need the barf bag and am feeling pretty calm right now.

We look so normal, don't we? This was after church on Easter Sunday yesterday.

Case's scans actually looked really good. The scans showed further shrinkage of everything, and that's great! The problem that needs to be addressed is the location of what's left of the "live tumor." The mass that is still in him is 3 cm x 5 cm, but a portion of it is already dead, calcified tumor...hooray! There is a portion that is still alive, and that portion is causing the ruckus.

Tomorrow morning poor little Casers needs to go in for ANOTHER MRI scan. This one will be a much more detailed look at the pancreas. The tumor is located either in, or right up against, the pancreas. So as everything stands now, if we moved forward with surgery, he would need what is called a Whipple Procedure.

A Whipple Procedure is "also called a pancreatoduodenectomy. The surgery is named for Dr. Allan Oldfather Whipple, who pioneered the procedure. During the complex operation, surgeons remove the upper section of the small intestine, the gallbladder, the head of the pancreas, a section of the bile duct and sometimes the lower section of the stomach. After the organs' removal, the surgeon reconstructs digestive tract. This risky surgery has several serious complications associated with it and a long recovery time." (You can read more here)

It's not a procedure that we want Case to have if it's not necessary, as there are serious, lifelong side effects. So here are the scenarios/questions:

1) Would more chemo shrink the tumor away from the pancreas so that a Whipple is not needed and in time a simple removal of the tumor would be possible?

2) Even if he had more chemo, would he still need a Whipple in the end? If so, let's avoid more chemo and just go straight for the Whipple.

3) Is the size of the active, live tumor small enough that we could just leave it in? I know this sounds crazy, but Neuroblastoma IS crazy. In babies like Case, the tumor cells often mature into benign cells that can be left inside the body for the rest of their lives with no side effects or risk of malignancy.

Bottom line, we are doing more tests tomorrow. The Children's Hospital Oncology group will be reviewing his case, and we will be seeking a second opinion from a group at Texas Children's in Houston (who are very experienced with Neuroblastoma) and from an expert at Cook Children's in Ft. Worth.

I called our initial oncologist, Dr. Pass (the one who retired the week Case was diagnosed). She said that we need a doctor who sees 10 Neuroblastoma patients a day to make this call for us; hence, the second opinion. It was so nice to talk to her! Love that woman!

So, I really don't know what is going to happen. Hopefully the events of the next few days will unfold quickly so that we can all move forward with a well educated decision on how to help our sweet baby. All we need are prayers that the doctors looking at Case's case will be inspired; and also that these other doctors will be willing and able to review Case's case so that we know if surgery should be cancelled or postponed.

I just have to add that I am so thankful for the support of family, friends, and the Lord because I feel so unusually calm. I usually freak out in this kind of situation, but I know everything will be okay. Now we just need to wade through all of the brambles to find the answer!

Hair

Case lost his hair two weeks after the first round of chemo. I know it didn’t look like he had a lot, but he did. It was the same color as his skin, so it was hard to see. So it was still really hard for us when he lost it. Harder yet when his long dark eyelashes fell out after round 4.

His hair tried to grow back in between rounds. By the time 3 weeks had rolled around, I could see a very fine growth of a short stubble. Two weeks later, shiny bald head again as the chemo drugs made the new growth fall out each time. There were a handful of hair strands that braved it all the way through chemo and got really long and scraggly, so we cut those down so that they will blend in with any new growth.

His eyelashes also went in phases where all would fall out except a line of super short lashes. They would get moderately long, and then fall out again. His eyebrows also thinned out by about 50%.

This is Case last week. You can see, very up close, little fluffies on the top of his head, back by the crown of his head. You can also see the tell-tale signs of the chemo-kid-head...bright blue veins popping out of the bare skin!

Check out that baldy head (and the best pudding face ever!).

Remember his cute little head of hair?

Now that we are three weeks from the last round of chemo, his determined new stubble is getting a chance to grow!! I love it! You can run your hand over his head and feel little fluffy hairs everywhere. It’s still super light in color, so it’s not easy to see, but it’s there. I’m so excited for his bald head to not be so bare, especially with summer and the sun’s harsh rays around the corner.

Week of Scan

Here are some pictures from this week. A picture is worth a thousand words, so here are quite a few precious ones! Prayers have definitely been answered this week as Case has been a sweet, cuddly bug instead of a mad, screaming baby, like I imagined with him fasting.

Love the thumb-sucking

The sink is one of his favorite places these days! He is such a fan of water! This was a good distraction.

Trying to eat paper towels (the whole thing is shoved in) because he is so hungry from fasting!

Looking at the train display with Nana.

Case also loves elevators, and dances and walks in circles while riding. This was another distraction today. We visited all 12 floors.

Pushing all the buttons!

Walking up and down the stairs...over and over again!

Most of the time clowns are pretty scary, but this one had bubbles!

...and she had a "Number 2 Pencil!" ahhaahahaha! I laughed so hard!

Love the accordion playing clown on the right. She was getting into it!

Flirting with the nurses. We were here 3 days this week, so they all cheered when we walked in today. They loved him. He was smiling it up with them!

Eating more paper towels!

The roughest day was Wednesday, when they had to insert an IV just to give him the medicine for his MIBG body scan. Remember how I said that no one can get a needle in him? Yeah, well, they wouldn't access his port because it would cause that area to look like cancer cells on the scan. So they called the "magic worker," Ida from the E.R., who can insert IV's in the crook of the arm. It worked, after an hour of waiting and trying. He wasn't a fan of that.

I am currently waiting for him to get out of his MIBG scan and his MRI. It's been over 4 hours. We will get results next week from all the scans and the plan for surgery. Thank you all for your prayers!

Power Port

This is what the port looks like. A needle is inserted into the bubbly-plastic looking part outside his skin, and stays in his skin for as long as needed (like an IV). It is taped down and the tubing usually comes out of a special hole in his onesies that his Aunt Kendra made him.

(the other two pointy things in this picture are his ribs! He has protruding ribs! So it's just one port...not three!)

The port has been a huge blessing because Case is almost impossible to access by needle. The special IV teams at the hospital have had a hard time getting an IV started on him. He has one place, in the crook of his left elbow, where blood can be drawn. We put a numbing cream on the port an hour before accessing so that he doesn’t feel pain. It’s funny because the cream is held in place by putting a piece of press-and-seal saran wrap (or plastic wrap) right onto his skin. It surprisingly holds tight! After an hour we take the saran wrap off and it’s numb for about 5 hours.

There is tubing that goes from the plastic bubble and goes up his chest toward his shoulder, does a u-turn, and inserts into an artery. That way they can collect blood, or directly administer drugs. I can actually feel the tubing under his skin.

Case will keep his port in for probably a year, at least, after surgery and if he is clear. The doctors do this in case of a relapse. And also because he will have scans every 3 months and it just makes everything easier. So the port is here to stay for a while.

We have had to readjust the way we pick him up because the line that goes from the port to his artery is right where adults put their hands under a child’s armpit to pick them up. And we have to be careful while wrestling. It’s a small price to pay for such a wonderful invention!

Here the nurses are cleaning and disinfecting the skin with that swab. It needs to be cleaned for 1 minute and then sit for 1 minute to dry.

Then they put the needle in and tape it down! Case is so, so good with accessing and de-accessing! He honestly hardly ever squirms or cries. He is such a champ! What a brave boy!

Case has pulled his port out twice before and it was very traumatic! One time the tape around the port was just not quite tight and he pulled the pin out. Sadly, though, the tape was still on, so that needle was free under the tape to move around and poke his skin. I noticed it because he was fussing and rubbing at his chest. Fortunately only IV fluid was going at the time! We had to clean the area with alcohol (fresh cuts included) and put in a new port without any numbing cream. Poor baby. He did not like that!

The other time he pulled it out was when a nurse was de-accessing his port. Before they take the port out, they always flush the line with saline solution, and then put in some Heparin (an anti-clotting medicine), which will stay in the port and line until the next time he is accessed and the port is flushed. This keeps blood from going into the line and clotting while he doesn’t have his port accessed. The nurse had taken the tape off the port, but was still flushing with IV solution. Case reached down and quick as that, ripped it right out. The bummer was that we had to re-access the port with a new needle just to administer the Heparin! Accessing a new port (without numbing cream) for 2 minutes was not fun!

Other than those two times, he hasn’t had a problem. If he ever gets a fever, the doctors have to assume a port infection straight away and send him to the hospital for antibiotics. I count ourselves blessed to have avoided this. We will continue to go in once a month as long as he has the port to have it flushed and have Heparin put in.

Day 1 of Scans

Just wanted to give you all a quick update. Honestly, I was dreading today and the crazy, angry baby I would have to deal with. But, once again, we are blessed with a tender mercy. Case, who is usually really not happy when tired and hungry, was instead an angel baby. Through all the waiting he cuddled with me and laid his head on my shoulder, sucking his cute little thumb. He even fell asleep cuddled in my mom's arms in the middle of the busy Radiology waiting room. When he came out of it, he was this perfect, cute little angel again.

So thank you everyone for your prayers. They are listened to and answered.

Big Week!

I know our blog has been a bit quiet lately, but it seems like too much work these days! We are all worn out after walking around the house in circles all day. Case is still "pretending" that he can't walk without our assistance!

He has become such a little boy...wanting to eat dirt, swim in little puddles on the sidewalks, and open and close everything! And we get to go on each and every adventure! We definitely know how to cherish every moment and we are so happy that he feels good enough to want to do these things (but we're tired - hence the lack of posts!). It has been really hard to tell him "no" on so many things, too, like on eating dirt. His oncologists eyes got huge when I told her he wants to eat dirt!

We finished our last round of chemo on March 19th. It was a quick, one-day infusion. We had quite a bit of yuckiness and "angry baby," but we are DONE with chemo! Whoopee!

Now, this week is going to be a big week for us. Case is undergoing a slew of scans. Monday is a bone scan and a CT scan. Wednesday he gets injections of nuclear medicine for the MIBG (soft tissue body) to follow the next day. Thursday is the MIBG and an MRI. Poor guy.

He has to be sedated for all of these, which means he is fasting from the night before. All of the scans are scheduled for the afternoon, so I'm already know it's going to be H.A.R.D. But from these scans we will be able to determine what is left and what can be taken out by surgery. Surgery is scheduled for April 18th.

So please keep Case in your prayers this week. Please pray for his comfort as he obviously doesn't understand why he has to fast and undergoes the stress of sedation. We won't know the results until the following week, so stay tuned!