new spots/new plan

i am giving everyone a very quick note tonight. i am wiped out mentally and emotionally...but here's the quickie version: New spots have popped up around the spine on a couple of spots, there is a new soft tissue spot on the skull, there are two boney lesions...pelvis and head...and the two spots we already knew about...the lymph node and the kidney/spinal area. Overwhelming news, but not 'devastating' . The doctor said she did not see anything 'life-threatening'. Today our doctor said that Hans must have two different Neuroblastoma mutations. That has blown me away over the course of the day. Hans has not one Neuroblastoma to fight...but two. His boney disease tends to respond to one type of therapy, his soft tissue disease another. We will begin to treat him on Monday. We will start up radiation therapy concurrently with chemotherapy. They will radiate his spine and skull. We will use Carboplatin. It is a 'radiosensitizer' chemo. I am sort of wordless for any kind of thoughtful commentary on all of this. Just keep on praying...looks like we have a taller order than we had bargained for for Hans' 18th miracle... I just wanna thank you for hanging in there with us. Thanks for your thoughts and prayers and all of the little and grand kindnesses. It is holding us up!

Building, anyway

Hans is somehow having a better day than yesterday. He has been awake and playing and even building... Nice! Thanks, mom for sending him Green Lantern. You somehow knew he'd be up for it. Yesterday Hans slept most of the day away. Kevin had returned home, and our neighbors Larisa and Claire came down for a real spoiler visit... supplies, snacks, sushi. Wonderful:) We are so fortunate to have them right next door. Larisa has offered to be points person for me. At at time like this, we tend to get a lot of kind offers to help and I'm not too good at fielding them. Thanks, neighbor!

We have the first part of our plan. Thank Goodness! It feels awful to have news of progression and no plan to deal with it. I always say that as a cancer parent your Plan is your life raft. The time without one is pretty choppy waters. Our lovely oncologist and nurse practitioner came by today. We plan to scan Hans with both an MRI of brain, neck and spine, and an MIBG this week. Dr. Araz is looking into using stem cells if we need them. On Friday we will gather the facts from all three scans and make a treatment plan of attack. I was really concerned about things like low platelets and # of  days since last therapy.... but Dr. Araz has assured me we will be fine. Hans' platelets have been about 50. Hans' tummy can't tolerate much right now. He is even taking his meds just one pill at a time. Usually he can down a mouthful. He hasn't really eaten anything in 7 days. They plan to hang TPN/IV nutrition tonight, it will run 24 hours. But, as I type this, he is eating some Ruffles Cheddar Sour Cream Potato Chips. He says he is hungry, and he has asked his daddy for some Popeye's. Kevin and Elle are on their way back tonight.  Kevin will go back and work Weds/Thurs and be off again to join us for the weekend (if we are still here!). 

Elle is done with school Thursday.  Roxie is driving down to be with us tomorrow! Elle brought popsicles to the nice kids at Warren today. So sweet.  Hans had wanted to come to school one more time and hand them out.  He has missed a lot.  He has barely had any school, computer class or speech therapy in the month of May:(

Rest in Peace, Sweet Ava!  This dear girl lost her 3.5 year battle against the beastly NB last night.  Bless her sweet little family.   Jack, Olivia, and Isabella have also been thrown back into the ring in difficult situations.  What do we make of all these gorgeous, lovely, regular, super kids all in the fight for their lives???

Thanks for checking up on us.  Lara

ER/Xray/stat CT

So we have some pretty rough news. Hans' abdominal pain was not getting any better, he even pooped three times for us! Kevin took him into the CHLA ER yesterday morning. Crazily, Elle and I took the opportunity to drive north to Santa Cruz for our friend Megan's baby shower. Kev and Hans went through the ER and got admitted last night. They did an xray that eventually showed "something" right where he has been hurting. They ordered a STAT CT. The CT revealed a new soft tissue lesion between Hans' left kidney and his spine. This tumor was not there in the scan the week of April 18th. The scan also revealed a clump of small lesions at the right neck/lymph nodes. Elle and I made it back to LA shortly after Kevin got this news. We are likely to remain inpatient for now on pain control. Hans is getting regular IV morphine as well as oral oxycodone. He is not feeling well, and he is still not eating or drinking much at all. We are hoping they will get him into an MIBG scan early this week to see if there is anything else going on. We hope to have a game plan soon. Not sure what it will entail at this point. We had those five glorious days last week, from our discharge Friday, to the start up of this new pain on Wednesday. We thank you for rallying together behind us once again to help push us through this next hurdle. We thank you for our thoughts and prayers for this precious boy of ours!

Not sure

I'm not sure what's going on, but Hans started to have stomach pains on Weds PM. He isn't doing so hot:( We actually took him down to CHLA/urgent care yesterday so that they could get a peek at him. They were convinced that it was just constipation. We are just not so sure. That's possible! We are actually holding Accutane for the moment! UGH. Hopefully we have some action around here and things start to turn around soon!

Whiplash

I feel like we could get whiplash with the news we get some days. We went in for a post-therapy check up on Monday. We got good news and potentially bad news. AMAZINGLY, Hans' pain is still GONE. Amazingly, Hans' bone marrow biopsies all came back NEGATIVE for disease! They were triple stained for NB by the one and only Dr. Shimada. Earlier, we had learned that the aspirate was slightly positive. I feel I should give you a little more detail. When they draw Hans' bone marrows they draw on the right and left sides of either the front or the back of the hip. They get two samples with each draw. The aspirate is the gushy/fluffy stuff that comes out. The biopsy is the hard bony stuff. The good news is that Hans' marrow is clearly in good shape. I was concerned for these results with all the pain he was having. But, who knows. That pain is gone now. It's just one more mystery of Hans.

The bad news is we are now on a lymph node watch. Hans has some swelling at the lymph nodes in the right neck. It feels like two hard peas. Dr. Araz says they are suspicious for NB! :( :( :( I think they popped up in the middle of our ch14.18 week. The bummer is that Hans may have to change up therapies if they grow. We will go back in next Wednesday for another exam. Dr. Araz says that if it is NB that is not controlled by this therapy, it will reveal itself. Now we now what we need the 18th miracle of Hans to look like. Oh I hate that we have to be so greedy for miracles!

 Hans was cleared to start Accutane! We started Monday night. Boy - we are a little nervous about this. Hans was on Accutane alone back in the 2007. It caused him problems of insane headaches that landed us in the ER for a CT of the brain - looking for tumor or pseudotumor! We just remind ourselves that Hans is a bigger boy now. Hans will be on the Accutane for 14 days between each inpatient cycle. While on Accutane you have to watch your sun exposure... good thing our pool is pretty well shaded by palms.

 Nutrition is our other problem right now. Usually Hans' taste buds evolve slightly with each therapy he starts. Right now he is weighing in at his teensiest, a mere 16.2 kgs. He seems to be trying, but not devouring his old standby's... We'll have to stumble on some new delicious discoveries for him.

For fun, a pic of my mom, Elle and me at the beach in Santa Monica last Friday night after discharge

Home with no pain

Just to quickly let you know that we are all home now! Hans has been pain free, just as we had hoped and prayed! I feel like if I were counting, this would be, what, Hans' 17th miracle??? He'd be in the pool, but for his Insuflon.. his subcutaneous shot device. That'll keep him out of the water 'til we pop it out on Thursday. I'm praying the pain will stay away. But I wanted you to get the happy news with us:) A few more thank you's... thanks to Mich for the soup and books! Thanks to mystery friend for the amphibious rv device! Thanks to Edgington's for the cool Bionicle waiting for us in the mail box. And, thanks again to my mom for coming:)

Days 4/5

I meant to post yesterday, but I fell asleep.  Yesterday was really more of the same!  Hans seems to be handling the Antibodies well!  The docs yesterday told us that subsequent rounds tend to mimic the first. So, he might just be able to handle it all well.  What a relief!  I am now asking myself if I was psyching myself out and making it out to be worse than it is.  But, I don't think so.  Some kids don't tolerate it well and have issues with blood pressure and heart rate that can even land them in the ICU:( On Monday, one of the Fellows we know well here pulled me out into the hall and tried to prepare me for the worst.  He said, I want you to be prepared. I don't want to sugar coat this.  This therapy is rough.  Kids can get into trouble with it...  Pain, fever, blood pressure and heart rate issues, allergic reactions, etc.  UGH...  I feel better to now have Round 1 under our belt.   

We are now getting our 2-hour GMCSF infusion and we should get the IV removed and get discharged in a few hours.  Kevin and Elle came to join us last night.  They came bearing gifts from our friends the Toth's!  Thanks, guys!!!
The guys will return  home tonight, and us girls are gonna stay in LA since we have to get my mom to LAX in the AM.  I think we will go have some fun in Santa Monica.  I like to go catch a couple of the street performers.  Why not??  Hans and Kev will be happy to have a guys night in.  Pizza, spaghetti tacos and some good snuggles with Honey, Black, Orange and Cotton.

Day 3

Today really went smoothly!  I guess so far Day One has been the worst.

Hans received his ch14.18 at the higher rate all day.  He is just now finishing up the dose and flush.  Ten hours!  I'm pleased.  He didn't really have an eventful day.  He has been grazing on food and thirsty for drinks.  My mom has been keeping him in Popeye's chicken.  He has been snacking on popcorn, peanuts, goldfish, raspberries, grapes, fruit roll ups and drinking his favorite Mt. Dew, as well as cran raspberry juice and water. He has been thirsty!

We had just a little excitement this morning.  Hans' Albumin was low.  I learned today that Albumin is a blood product; a volume expander. If your Albumin is low you can retain fluids.  It's one of the levels they watch closely on this therapy. They gave him an infusion and then more Lasix to help drain off the fluids.  He also had just a low enough HGB to warrant a transfusion!  Hans' HGB was 9.7 and it needs to be 10.0 to get the antibody infusion.  This morning was a little chaotic...he didn't have enough lines for all of his infusion needs.  They actually debated added a second IV.  I just calmly shook my head no.  They were able to use his Insuflon device for his GMCSF injection and save him one two-hour transfusion.  Ultimately, they didn't have a line for morphine during the first hour of the ch14.18 infusion, so he got a loading dose, and then went with out.  He did well!  I am relieved.  Sometimes Hans is soooo tough, and sometimes he's pretty vulnerable.  We just never to what to expect.  Whew. 

We got a sweet treat today.  Ms. Hodges came down to see us.  She delivered us this banner from Warren as well as a new Lego set and a beautiful gift for me:  a Vera Bradley duffel bag.  Wow.  So dang nice!  She broke me out of the hospital for a couple of hours while we went for a nice lunch and a pedi:)  Fun!  Thanks Sally!  You, Janet and the kids at Warren are making us feel so special!  Special thanks to Elle, Claire, Madi, Eszter, Daz, Jr, Roman, and the whole gang!!! You kids just prove it that it's cool to care!  xoxo

Round 1 Day 2

Today went better for Hans.  Thanks everyone for thinking of him today and sending your thoughts and prayers his way.

I wanted to let you know that he did a little better.  I think it helped to be on a good dose of morphine.  Hans started the Ch 14.18 at the 5 ml/hr rate and it was quickly upped to 10ml/hr.  He tolerated the faster rate for over 6 hours!  We had to slow it down at about 7pm when he started to get rashy cheeks.  It should run til about 1 am, and then they'll probably give Lasix to try to draw off some of the fluid he is retaining. (They did this last night too.)

Much better day today.  We shall see what tomorrow brings.  Thanks everyone, for your kindnesses towards our family!

Antibodies Round 1 Day 1

Well, Day One was a doozy.  Poor Hans - he had to get an IV placed and that is something he just doesn't do anymore.  He has had his Port au Cath for 4 years now and normally doesn't have to deal with an IV.  Hans has excellent coping strategies for all the procedures he does on a regular basis, but he has a lot of anxiety about procedures he isn't used to handling.  It didn't help that it took THREE tries to get the IV in:(
The Antibody (Ch 14.18) is incompatible with the morphine, so he needs two separate lines.  He actually has an additional device placed, an insuflon.  We can inject the GMCSF shots right into the insuflon and save him a poke for each dose he is to get for two our of every 4 weeks.  There's a lot going on!  Hans is hooked up to a continuous IV morphine drip with self-control button and he is being monitored by pulse ox, HR monitors and BP cuff.  He's all weighed down.

100 ml of the CH 14.18 goes in per day for four days.  They tweak the rate according to what each kid can tolerate.  They start at 5 ml/hr or a 20-hr transfusion, and try to bump it up to 10 ml/hr or a ten hour transfusion.  Hans did well with the 5 ml/hr and started to have some trouble when it bumped up to 10ml/hr.  All day they were tweaking the antibody rate and the morphine dose.  Antibody is painful because it is a foreign substance.  I think they got him to a semi-comfortable spot. The afternoon was the worst. I've also heard Day Three is the worst overall.  We'll see how it goes.  It is nice to have my mom here!  Sort of a two-person job the first time around, at least.

Hans' IV is in his right hand.  And, he's pretty much knocked out cold since all the meds started!  All that adds up to not so much Lego building. That's too bad because we went in on the Death Star with my mom!  He'll get to it one day.  I think it was honestly a little bit much for Antibody Therapy.

Dinner and a GoKart Ride

Well, Hans is still certainly in pain. It is still a 4 - 6. But we think the GMSCF shots may just be helping him feel a little bit better! He said he was up for an early Mother's Day Dinner last night. We went to Los Aguacotes where we ate well and Hans left the tip out of his own wallet! Then, we decided, what the heck, let's go to the Go Kart Track. Pretty excellent Mother's Day Eve if you ask me.

 So, it's Mother's Day! Happy Mother's Day to all the mama's out there. Especially to our moms and grandmas! Stephanie, Kathy, Jean, Diana and Shirley too! xoxo My heart is also with all the angel mamas out there. I read online today that Mother's Day was originally developed to honor mothers of fallen soldiers and to repair families destroyed by the civil war.

 It is not even hard for me to have Hans admitted today on Mother's Day. Although it is sad that we are leaving Kevin and Elle here to trek down to LA. I am just excited that we are helping him. And, I get to spend Mother's Day with my mom for the first time in about a dozen years since we moved out of state.

 I know a lot of people cannot fathom our sustained fight against NB. But, you know what, primal instinct just takes over. There's no "choice", no other desire. Sure, your heart and soul lament the "normal" everyday life experiences of your peers. Your heart laments and covets a healthy boy. But, there is a tidal wave of protective instinct and you do everything you think you can do for your boy, for your kid. It's a powerful force. You just look at your boy, his gigantic eyes, you see the fight is there, you see the hope and faith. You hear him talking about his future plans.  Lately his has been talking about the apartment he will get in the foothills one day!  You just do what you gotta do.

By the skin of our teeth...

What a couple of days.... I don't even know how much of this story to tell you. I guess I should say that CLINICALLY things are sort of deteriorating for Hans. He is in pain. It hurts to get up, get picked up, or to move around much at all. It is shocking how fast things change! He isn't eating well and has lost the 5 pounds he packs on when he is doing well. He is down to his "fighting weight", a mere 16.5 kilos, when he is not doing well. I checked out a wheelchair from the hospital yesterday because it hurt him to be carried around by me. I've never had to do that before.

We have been through the wringer here! At yesterday's office visit we got preliminary news that bone marrow aspirates were clear. I was consented for the Antibody therapy. All plans were made to START by giving shots as of today and admit Hans on Sunday, and off we went. BUT THEN... on my way to the pharmacy to pick up the yet-to-be-approved-by-our-insurance GMCSF injectable, I got a call from our doctor. My Pollyanna self never ceases to amaze me. I thought I had left my consents in the office. NB mamas will probably chuckle, the docs never call you for the little things. The lab had called her back. They found some NB in the aspirate. Long story short, the NCI approved him for the antibodies again this morning, since the aspirate was less than 10% positive. However, the biopsy (bony part) is still pending for 48 hrs.

 We are going to start today! This is the rough schedule: Shots at home for three days, inpatient for 5 days for antibodies, shots at home for another week, Accutane at home for 14 days. Then, round two is a little different. I still plan to go into more detail on the shots (GMCSF), the Accutane, and the IL-2 that he should get in rounds 2 and 4. This therapy will continue, if Hans is successful on it, for 5 months.

 I am both terrified and grateful. It is clear that Hans needs to be on a therapy now. His bone marrow aspirate, as well as his clinical picture, are telling us that. We don't like it that Hans has a positive marrow. But I remind myself that his marrow has always (somehow) cleared quickly. To my memory... he has had positive marrows at FOUR points in his treatment history. Each time, the marrow cleared as soon as the next therapy began. Hans is a responder. His bone marrow is particularly responsive. Unfortunately, his "Zombie Tumor" tends to go away for a while, and then come back to life again. Dr. Araz pointed out that MIBG isn't particularly effective on marrow disease. Hans hasn't had another type of therapy in now nearly 5 months. We've let the NB act up. I find it hard to wrap my mind around the fact that Hans had near-perfect scans just THREE WEEKS ago! And once again, we found ourselves in the situation of biding time to wait for the perfect therapy. Our doctors had to jump through a lot of hoops to get this therapy approved for Hans. I am going to choose HOPE. This is the only therapy Hans has ever attempted that will actually train his immune system to attack the NB all by itself after the therapy ends. How I wish he wasn't going into this therapy at the lowest end of his weight range though, and in pain....

Thanks to everyone for keeping this kid in your thoughts and prayers.  He still has a lot of fight in him.  He is All-In for the next round of therapy.  He says he just wants to get it over with!  He has nothing but faith and hope in his team for and their care of him.   Thanks: to Gramma Kathy for the cool Ninjago above, thanks to Larisa for your expert Elle-care, thanks to Michelle for your special HEB Chicken Noodle Soup shipment.  Thanks for pooling together and keeping this little family afloat.  Thanks too, to my mom!  I called her in the middle of our "stupid week" and I told her I was nervous and that I thought I'd need her for our first week of Antibodies.  She bought her ticket last night.  She flies into LA on Sunday.  She'll hang out in LA and help us navigate the first week of that therapy.  Better go call the Ronald McDonald House...