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...

it all comes down to the marrow

Superquick update: Hans' wart was treated today. Part one of 4 anyway. It hurt and it was unpleasant, but at least we are finally making some progress somewhere! We also found out that Hans was finally approved by the trifecta of committees...the NCI, (or NIH...I seriously can't rmemeber!) FDA and IRB. The IRB approval came in today during our office visit. Hans is cleared to start immunotherapy or antibodies...provided his bone marrow aspirate is free of NB. We will go in tomomorrow for the bone marrow procedure. Thanks for any prayers, thoughts and good vibes you can send our way for tomorrow. The last several bone marrows have been clean. But of course, with this back pain, bone marrow disease is something that needs to be ruled out.

Stronger

This You Tube Video is certainly worth checking out: Seattle Children's Oncology Ward's take on Kelly Clarkson's Stronger. Grab a tissue...it's pretty sweet!

We hope to be able to figure some things out this week.  Wednesday might just be a big day for us. Not only will Hans see the Dermatologist, but he will also see the Oncologist and hopefully get some of our questions answered about Immunotherapy/Antibodies....

In the meantime, we are just trying our best to live around the pain.  We had a pretty packed full weekend. My neighbor Larisa came over and helped me get pictures up on the wall!  Fun. (I think I'm overly proud of myself for getting these types of things done.)   We are STILL moving in! Kev's done with the hardwood flooring in all but a a couple of small closets.  Now we are focusing on storage and needed furniture, etc...  We still need to tile the kitchen and  hearth, and do all the baseboard and transition pieces for the floor.  Huge project!  We are finally starting to appreciate this crazy house a little bit as we are seeing the light at the end of our tunnel on some of our projects. Kevin made it back from his boys trip to Indio - those guys did 72 rounds in 2 days of golfing. 

Anyway, we just proceeded with "regular" life and Hans was able to pop in and out of activities as he was able.  We had a fun weekend of bowling, a campout in the back yard with Elle's friends, grilling of course, roasting marshmallows, making s'mores, swimming, playing Super Mario Bros on the Wii, snuggling up for two movies - Chipwrecked and We Bought a Zoo (thanks Aunt Holly, it was really sweet!).  Hans loved those movies, but not quite as much as he recently LOVED watching Jack and Jill.  We all enjoy watching it just to watch Hans watch it.  It's awesome. 

Elle's pain eased away as soon as she hit Day 4, thank goodness.  She is just trying to figure out how and what to eat. Hans' pain has remained between a 4 and a 6 since we went into urgent care last Wednesday.  We just give him three half tabs of oxycodone over the course of the day and it seems to hold him over.  The crazy thing is that this pain seems to roam.  Sometimes it's in his low back, sometimes it's up in his right shoulder.  I am not sure what that means?

  

Unknowns...

Hans woke up at about 4:30 am on Wednesday asking for a warm bath.  His back pain was peaking at a "ten" on the pain scale.  We tried everything, got packed, got Elle all set up for school and headed off towards LA.  We were fortunate to get a slot in urgent care.  We were also fortunate to be cared for by a kind and knowledgeable nurse, Alice!  There are some days when your psyche just needs to be in gentle and competent hands and you are endlessly grateful for wonderful ladies like Alice. They checked Hans out and ordered another x-ray.  We were bracing for a compression fracture.  I was hearing phrases like "back brace for months", etc etc.  I have sort of trained myself not to let that stuff sink in all the way until it is truly, absolutely necessary.  Luckily, after hours of waiting for results, they told us they did not see a fracture.  Hans got a couple of doses of IV morphine and we devised an around-the-clock oral home pain management plan.  I voted to come home to get back to Elle with her sore mouth, and to let Kevin hit the road.  The radiologist suggested an MRI to further explore what is going on with Hans' back.  Since we've been home, taking a smallish dose of Oxycodone every 6 hours or so, his pain has remained at a "4" on a ten scale.  Elle's mouth pain has also turned around!  It is much better here on day 4, but she is still learning how to chew and I'm the queen of soft foods.  We were fortunate that our neighbor took care of everything from a soft foods dinner menu for Elle Wednesday night, to a mocha delivery for me this morning.  So sweet!

We are now playing the waiting game.  I am sure our team is trying to hash everything out, and I also fear that this new pain has put a question mark over what is best next.  We are waiting to hear if and when we can start Antibodies, waiting for an MRI, and waiting to see if we need another Bone marrow aspiration before antibodies or the next therapy, and waiting to get this wart taken care of next week.  The waiting game is one thing, but then you don't want your head to mentally "go there" thinking that the Neuroblastoma isn't particularly adept at playing that game.

braces for elle!

We spent yesterday morning at the Orthodontist hooking Elle up with some new hardware. Adorable, huh? She chose the pink bands. I didn't realize how much braces hurt the first couple of days. She is pretty miserable. I'm just ridiculously proud of myself that we actually got it done. In the last year things have been crazy and the thought of keeping multiple ortho appointments was more than daunting. We chose Dr. G. in large part because he promised flexibility and understanding if we have to reschedule follow up appointments. Braces need to be tightened every 6 weeks nowadays! Dr. G trained at CHOP, and met Hans, so I feel like we are on the same page. Elle should have to wear them for about 18 months. She wants them off by high school, but that might not quite happen...

After really being laid up for nearly a full week, Hans was starting to feel better. And then, his back started to bother him in just the last day or two. Who knows. We are just hanging in there, we have to wait to see what is happening with Antibodies, and see what happens at the dermatologist next week, and just try to stay on top of it all.

 I somehow failed to get a pic, but we had a fun visit from Grandpa Dale, Uncle Quinn and "Uncle" Mel. The guys stopped by for the night en route to their guy's golfing vacation in Indio, just East of Palm Springs. It was a lot of fun to have them! Kevin is going to go out and join them for a long weekend (aka Kev's third spring break). It's sure to be a lot of fun, there will be 16 guys out there from Kevin's hometown of Ellensburg!

I know all the ladies are probably reading this - what about Lara? - well, I actually had a fun weeknd in Vegas planned with my girls in mid April. It wound up falling through. I missed the chance at going, but I was relieved that it didn't fall apart because of Hans' situation this time! More fun is to be had all around, I'm sure.