Looking good

They are still working on insurance, but the sweet charity funded our temodor for the rest of this week. Hoping they will figure it out before the next round. Of course I'd hate for that to determine future treatment options for Hans! It was sad to see how much of our docs and staff time has been spent on these insurance issues. Time better spent taking care of kiddos for sure!

We had a long day yesterday! We finally checked out of here in the evening after a great check up with the Neuro opthamologist. He pretty much unequivocally said Hans' double vision would go away. It may take time, but he is already making great improvements and all sings point to complete vision recovery.

We are getting chemotherapy in the day hospital at CHLA. It is an adjustment. The inpatient unit is brand spanking new. Hans can deal with it. However, the clinic side is rather ancient and Hans is having a little bit of an adjustment period. When he found out he would be getting chemotherapy here he literally said "that isn't gonna work for me!". I guess my bday present of an iPad doesn't seem so indulgent after all! Hans has had very very long days. The treatment bays are not all equipped with tvs, etc. I'm sure it'll all get assimilated into a new semi normal. Just trying to focus on the good news, that he's getting better!

Thanks to A for putting us up this week, and to Kevin and Elle for driving down after school and work to keep us company last night!

Round 2

Hans at the day hospital today for more chemo and then radiation...

We have Irino/Temodor Day 1 under our belts! I'm pleased that the stresses we had today weren't over Hans' health! I'll share with you just for the heck of that it that we are having insurance issues:( Our insurance doesn't wanna pay for the Temodor! They are okay with the Irino, but they've denied the Temodor. I'm rather shocked that we've made it this far without finding ourselves in this situation! Our Nurse Practitioner was really working hard to fight it or fund it. Kevin and I told her - whatever happens, don't delay treatment, we'll just pay for the meds.

This med is pretty pricey - the five pills we need are $1100! Ha. So, the NP had a great idea, why don't we just fill it one day at a time.. So we paid for one pill today, we'll see if we can fight insurance tomorrow. The NP has a lovely go-to charity for just this situation, but the funding agent had gone home sick today. Just a day in the life....

In really nice good news, Hans is tolerating Day 1 of this round MUCH MUCH better! Thank goodness! He is a chatterbox:)

We had a pretty great b'day wknd. Our Santa Cruz friends Megan, Phil, and Desmond came down to not only help me celebrate my 40th birthday but volunteered to lay the floors in Elle's room to help out! How sweet is that??? Friends Stefano and Heidi and our new neighbors were able to join us for a fun night out. We felt it quite a little luxury to be at home, all weekend, with friendly and helpful assistants on our crazy project!

2nd post of day

I just have to round this post out with another note. For about two hours today I was under the impression that Hans' MRI had shown "signs of a stroke". There had been some concern, because of the increased pressure and its proximity to the main vein draining from the brain. That was why they had ordered the MRV. But as soon as I hit send on my response email and the dozen of questions it contained, our Fellow immediately called me, apologizing for his Gross Type-o. He corrected himself. He meant to say that there was NO SIGN OF STROKE. In fact, they are canceling the orders for the MRV based on the favorable findings and evidence of blood flow on the MRI.

Just one more tally in the "weird things that happened this month" column. What a relief that the error hadn't been the opposite. Our Fellow, Dr. Tran, went on to say that not only were they impressed with the reduction in Quantity of Hans' tumor, but that it also appeared to be reduced a good deal Qualitatively in strength/intensity/aggressiveness. Dr. Marachelian emailed that they are very pleased with Hans now. We are too! I'm excited that the Radiation and Irino/Temodor will have one more opportunity to work together against Hans' tumor next week.

>50% Reduction

Hey - we just got some news...

We just found out there is a greater than 50% reduction in the tumor burden on Hans' skull.

There is still disease present and signs of increased pressure on the brain, so our docs have agreed it does make sense for the radiation to continue. We get today off but will start back up tomorrow. Like I said, we have to be at CHLA all next week for Inrino/Temodor anyway.

I just found out we'll do a total of 8 more sessions for a total of 20 radiation sessions. Looks like we'll be in LA all next week, and then finish up Radiation the Tues/Weds after Labor Day.

They may want to do a blood flow study, or an MRV in addition. We are just hanging in there while we let the docs get down to the bottom of our boy! Just praying we are all lead to the most effective, least harmful treatments for him at this time! Thanks for your thoughts and prayers as well.

Another MRI today

E's first day of the seventh grade. Hans has yet to even be registered for second!

I'll work on that in a week or two.

We are on Day 12 - what is scheduled to be our last day of Radiation today. Dr. Marachelian is concerned that Hans' vision hasn't totally corrected, and she suggests that we take another look at the MRI of the brain today, and decide if there is still room for improvement. If there is still is some tumor to work on, we may add additional days of radiation. It actually won't affect our schedule much because we were heading back in all next week for Irino/Temodor Round 2 anyway.

Hans and I are traveling back and forth each day this week. It actually isn't that bad, since the radiation appointments are so quick. We are keeping an eye on Hans' Potassium. Hans is walking around pretty slowly these days...I'm not sure what's up with that. But - he was up for a 3 mile bike ride after clinic on Monday:) We will stay in LA tonight, and we hope to learn of the Doc's new treatment plan quickly after the MRI...

Elle is doing pretty well. She started school Monday. We are incredibly lucky to have 3 7th grade girls in a row right here as our new next door neighbors! They've hit it off and E is of course making new friends at school as well. She will start soccer tonight. Hans has had fun using the girls as target practice with his squirt gun arsenal.

I'll update with the new MRI results and the new plan as soon as I know.

Sweet Lily

Today I learned of the loss of dear sweet Lily. I'm still whirling from her story. Lily had a fabulous Kindergarten Year (Off Treatment! NED!) and turned up at CHOP in July to scan just a bit early b/c of a few suspicious symptoms. Hans and Lily were on the CT scanner on the SAME DAY back on July 19th. Her scans showed progressive disease. Lily rushed back home to celebrate her 6th birthday in NC. At one point, Lily and Hans were slated to start the ALK trial on the same day (Aug 3rd). We considered sharing a beach house on the shore and living it up. Well, both Lily and Hans' plans were to change. Lily started radiation. But then, everything happened very fast and it was time for her to go home.

Ashton, Lily's amazing mom, has truly blown my mind. She has cherished each moment with her daughter and looked for the silver lining. Lily didn't suffer and is now free of pain and free of cancer. Please add her and her sweet family to your prayers tonight.

Lara

PS - we are simply having a restful, productive weekend at home. Hans is okay. He is still seeing double and has had a couple of headaches, but no more back pain! He has burned through his birthday gift cards and has completed about 14 new Bionicles this weekend! He is thrilled. He is gonna need a bigger shelf;) Thank you to everyone who has sent cards, birthday cards and care packages. Soo sweet - we are feeling the love!

Oh, what a long strange trip its been

Hans this evening enjoying a little RnR and Aimee's with pizza, wings and the remote!

Well we got some unexpected bad news today. I thought I had absorbed all the bad news that could possibly be dolled out, but no. It seems the pathologist, Dr. Shimada, was out of the country last week. Upon his return from Japan, he took one look at Hans' bone marrow biopsy and apparently saw the NB with his naked eye. Whoa, I wasn't prepared to walk into that information in today's office visit!

BUT to tell you the truth, I had been truly truly struggling with making any sense of Monday's MRI results until I got this piece of information. I hadn't wanted to post about them until I could meet with the Onc today. I guess the good news from the MRI: no big bulky disease apparent on the spinal column. This is what Dr. Marachelian had been looking for and we were all so happy to hear was not there. There were some "Bony Changes" in a couple of the vertebrae. That is actually consistent with the findings of the CT. This is where the waters get mucky and I'd like to go buy an "I hate MRIs" T-shirt. I feel like I'm pretty good at understanding MIBG results, but every time Hans has had an MRI result, I feel pretty desperately confused. The cause of "Bony Changes" could be: treated tumor, active tumor, bone marrow disease, or some other factor. Are you as confused as I am yet? Hans has never had disease there. Well, now that we know he has a little bone marrow disease, maybe it explains the "Bony Changes" on the MRI.

Today's office visit was unpleasant, but I don't want to paint all too negative a picture. I feel like Hans' scans make total sense to me now. I feel like we have a pretty clear sense of what we're up against. Yes, I had to hear the phrase "Rapid Progression" uttered about my boy today. BUT at the same time... we were working together to do an assessment of Hans' response to therapy. The Fellow in our office visit today literally used the word "AMAZING" to describe the complete disappearance of the lumpy NB across the top of his head. Dr. Marachelian was also very pleased to point out that Hans's lymph nodes shrunk back to normal and the little pea sized lump on the back of his skull is GONE. This is exciting because these areas are not being irradiated. The fact that they are gone is an indicator that Hans is systemically RESPONDING to the Irino/Temodor. For the time being, I'm hanging my hat on those last two facts. Oh, in addition, he had a robust CBC: HGB 12.1, ANC 6K, and Plts nearly 300!

At the end of a long strange month, it's a wine and chocolate dinner for me tonight. Hans is eating well on Pizza and Wings. We got sprung from the hospital yesterday. We are lounging around at Aimee's. She has been soo accommodating!!! Thanks, A! We will head home this weekend:) Kevin and Elle have come down as frequently as every other night and Kev is able to be in on most of the big office visits through speaker phone.

Thanks as usual for checking up on us and thanks for your thoughts and prayers for Hansie and his NB buddies especially Lily and Ava right now. xoxo

Waking Up

I wanted to share that our big week of treatment is over. Hans received 5 days of radiation and 5 days of Irinotecan/Temodor. You can already SEE the results! The bump on the top of Hans' head is almost FLAT!

His vision is improved (his eyes are less crossed and he is tracking the doctor's finger tests better), but he still says he is seeing double.

Hans pretty much spent last week asleep and not eating at all. He would actually throw up several times a day, after each of his little meds. He already looks better, awake to watch Saturday morning cartoons at least, but the appetite may take a day or two to come back.

He has only had one complaint of a headache (no more back pain) all week, so we have been weaning him down and off the IV Methadone. He should be on an oral pain med by Sunday or Monday. I am hoping the back pain doesn't come back once he is off the Methadone. He is also being weaned off the Decadron and will go back to his Hydrocortisone tomorrow.

Hans has his MRI of the spine on Monday morning (with Sedation). We must be inpatient to get that slot! Sooo... we will have a mellow hospital weekend. Today and tomorrow will be his first two days that Hans won't have to have any treatment or tests in TEN STRAIGHT DAYS, so we will look forward to it, and hope to be fetching food requests far and wide as his appetite returns.

My mom is going to go ahead and go home for now. Her BFF Pat flew down to make the road trip back up with her. Thanks, Pat!

This week Elle got registered for school, and she is trying out with a couple of different soccer teams. Kevin was able to take three days off this week and has been knocking out our major DIY flooring project and spending time between CHLA and Bakersfield. This is a crazy time, for sure!!!

Mid-Week Update

I'm sorry to have kept you waiting.

There is good news and bad news.

The good news:
Hans' bone marrows were negative for Neuroblastoma!
Hans' kidney function is normal!
Hans' CT scan was "unrembarkable" (Yay - no bulky disease!)
Hans has now had three days of radiation and chemotherapy (thank God we are giving this kid some treatment!!)
They are radiating two spots on his head and they are giving him IV Irinotecan and oral Temodor. His Radiation therapy is scheduled for 12 sessions m - f, which he can do on an inpatient or outpatient basis. His Irino/Temodor is on a 21 day cycle, he gets chemo the first 5 days and has 16 days off. At this point we haven't planned any farther out than the first cycle. We will make our additional plans shortly.

The bad news:
THe MIBG looked worse than the one we did in Philly on July 14th.
There are more spots on the head (consistent with MRI and what we anticipated to see).
The spot is still there on the hip - this is the new one that showed up in Philly on July 14th.
There are a couple of question mark spots on the spine.
We will do another MRI to confirm these or rule them out.
In all honesty, with Hans' pain, and with the rapid growth of what we can actually see on the skull, I was bracing for worse news on the MIBG.

Hans is having a rough week! He is just wiiiped out. The pain team actually switched him out to IV Methadone for the pain in his back:( With the combination of all three (methadone, radiation, and chemo) he is just sooo sleepy and has no appetite. He has had nothing to eat since Sunday night. He is being very closely monitored by the endocrine and pain teams. The good news: we are weaning him back to a lower dose of methadone and a lower dose of his super high dose steroid, decadron. We are all hopeful that we will have home/oral dosing in place for a possible weekend discharge.

Our Outlook: We are treating all of the NB with the combination of Radiation and the Chemotherapy.
We are optimistic that Hans will respond. In fact, I am putting all of my eggs in that basket. I don't have another basket.

Emotionally we are pretty fragile. This has all happened so fast and it's terrifying. I am sure I take out my emotions on the staff here. When something goes wrong, and for some crazy reason we have had at least a half dozen communication errors, I freak! I actually sat our attending and fellow down and gave them a little presentation on those errors. Since then, I have been treated like the Duchess of York! Oh, I also fired one resident from coming into contact with Hans. We are sort of fragile, in a war zone. A little PTSD going down. I'm trying to chill out!

But, I have to say that we have found in Dr. Marachelian everything we could need or want from a local oncologist. I am satisfied beyond my wildest expections. We are in communication with Dr. Maris and Mosse, and the two teams continue to communicate about their decisions for Hans.

Thank you for checking up on Hans and thanks for your thoughts and prayers! Please put all your eggs in one basket along with us.

Monday Can't Get Here Soon Enough

We are looking forward to tomorrow because Hans will finally start on a therapy to treat this new NB! Tomorrow Hans will have a simulation for XRT (radiation), and he will begin both Radiation Therapy and Irinotecan/Temozolomide (chemotherapies). They are scheduled together because Irino/Temodor is a radiosensitizer and they work better in conjunction with radiation. It seems like so very many days have somehow passed us by since we first got news of progression back on July 14th. We can only charge full speed ahead and move forward from tomorrow.

What has been happening? Hans had an opthamology exam on Friday. They believe that the pressure from the mass on the skull is causing the double vision. They also believe that as soon as the mass is treated the pressure will be relieved and the symptoms should go away with no long term effects! We also had a consult with radiaiton. The Radiation Oncologist believes the mass should respond well to this therapy as "neurobalstoma usually does" to radiation.

Our oncologist consulted with Neurology and Neuro-opthamology and determined a lumbar puncture shouldn't be necessary at this time. A lumbar puncture would detect NB in the Cerebral Spinal Fluid (if I understand this correctly). At this point, that is not indicated, this does not appear to be a CNS (central Nervous System) replase. If it did, our path would likely take us to a well known treatment in NYC, but at this time we do not have to go down that road. Our oncologist also ultimately decided against an biopsy of the skull lesion. She felt that it is pretty clear that this is NB, and that he could face the risk of infection or complications as he is about to go into radiation of this area.

Yesterday he had a CT of the neck chest abdomen and pelvis. We do not yet have those results back. They are doing a full work up of Hans this week. Today he is doing a urine study to test his kidney function. Tomorrow he will do another Bone Marrow Biopsy and Aspiration. Tuesday/Wednedsay he will do another MIBG. We will be inpatient until at least Friday so that Hans can be monitored for his first five days of Radiation and Irinotecan/Temodor. I am not sure how many days total we will be here for radiaiton, but it could be anywhere for 10, to 12, to 20 on an out-patient basis after the first five days.

Hans has been having some back pain in the last 36 hours:( He is getting IV morphine to control this pain. There is a bump on his neck that is bothering him. We are hopeful that the CT, bone marrows, and MIBG won't bring us more bad news.

Hoping and praying for a complete response to these therapies for our beautiful boy!

MRI

So we met with our onc on Wednesday. The mystery symptoms, specifically, those bumps reemerged on Hans' skull, and a vision problem of seeing double or a little bit crossed eye, persisted. The onc took a look at him and ordered a STAT CT of the head. Wednesday evening we were relieved with the news that the head CT was "relatively preliminarily okay". However, yesterday's MRI proved the CT very wrong. The bumps along the top of Hans' head are NB. What they suppose happened is that the skull lesion that has been under control on the Millennium for so long has grown up and out. There doesn't appear to be any brain involvement at all. There are a couple of other little spots indicated on the outside of the head as well. The lesion(s) that are there are outside the skull.

This is a really big, unfortunate deal. We are going to get started on radiating these spots as early as we can, today or Monday.
We are inpatient once again (our fourth inpatient stint in 5 weeks) to expedite some additional tests that need to happen including a neuro opthamology exam, possible biospy, radiation consult, possible lumbar puncture, CT of neck chest and abdomen, and another MIBG scan. We hope that all of these tests will be completed by Wednesday of next week. However, treatment can start as soon as possible since we are not enrolling on a study at this time. We will do radiation in combination with some chemotherapy such as Irinotecan/Temodor, (to which Hans has responded before). We'll find out shortly, but the radiation will likely be on an outpatient basis, approx 20 sessions, or four 5-day weeks here in LA.

This is awful, terrible news in comparison with our hopes to do something low dose and oral and from home for Hans now.
I am just hoping and praying that Hans will continue to be the great RESPONDER to therapy that he has really always been. We can get these lesions under control over the next 4 weeks, and eventually find that great, low dose therapy we can do from home... For now, we are glad to be here at our home hosptial, even if it is a 2 hour drive from home! My mom brought Elle back home early this week. They are here with us now - they are staying at the beautiful nearby Ronald McDonald house and Kevin is able to work and come and see us and be here for important meetings. We have our sweet friend Aimee who has proven to be at our disposal!

Thanks for your thoughts and prayers for our beautiful boy. We could really use them now.

Love, Lara