Yikes!

Whoa - we had a rough morning around here. First off, we found out last night that CHOP accidentally shipped out our med wrong. We had enough Millennium for 3 days, and needed more med by day 4, today. Whoops. Med is on a trailer somewhere between here and PA via UPS. Not due til the 2nd. Hans gets an unexpected 4day break in round 15??? We touched base with Dr. Maris via email. He said there is not much to be done about it over a weekend, but he did say given the fact that Hans has been on this med so long, that he wasn't too concerned about it.

Also, somehow my alarm didn't go off and we woke up late for soccer. We got to the field in time to start the game, but it was hairy. Elle is having some ankle pain and has been on and off the disabled list for the team. We are taking her to a Sports Medicine therapist on Monday.

Hans was able to make it through our friend Clay's Pump it Up party yesterday, but he's got a pretty nasty little cold. He didn't spike a fever last night, but I was sure watching him like a hawk. Oh, and Elle and her friends had a great time with the Rock A Thon! The kids had fun hanging out on a Friday night and I guess they raised $4,400 for their band! Isn't that great?

Lara

I got a couple dozen pictures from Carla at Kiss the Moon Photography today.
I'll have fun sharing these with you! Thank you so much Carla! Carla donated her time and talent to get these pics for us. I think it's so sweet of her.

Update: Hans is hanging in there on Day 3 of Round 15. It is a busy weekend around here with Halloween parties, get togethers, trick or treating, more pumpkin carving, soccer playing, bike riding (Kevin and I registered for the BP MS 150 next spring - so we have to start getting in training rides!!!), and more. Elle is doing a "rock a thon" tonight at school. Hans helped me haul my much beloved and well used glider rocker into the school today. She will rock for 4 hours with her bandmates to raise money for the band department. Sounds like fun! I'm just hoping this whole weekend gets to happen!!! I don't want to jinx us, but Hans has a pretty bad case of the sniffles as of this morning... but NO FEVER!!!!! He did have a pretty nasty headache last Saturday, but then Elle gets those too. Sometimes it feels like we are just hopping over landmines. Oh, how nice it would be to trick or treat from home.

My grandpa is to be sent home on hospice care today. My cousins and aunts have been working around the clock to retrofit his place for a new medical bed and various equipment. BIG job when you've been in a place 50 years. I wish every elderly dude had the love and support that my grandpa has!!! I wish I was there to roll up my sleeves and dig in. He'll be sure to have a good view of the TV for the World Series. In that vein, and for my grandpa, in fact for all of the grandpas (we've lost three this year - Kevin's dad's dad Len, Kevin's mom's dad Bud, and Kevin's stepdad's dad, Don!) I've got a few more Yogi Berra quotes, I love these!

"Nobody goes there anymore, it's too crowded."

"It was impossible to get a conversation going, everybody was talking too much."

"The towels were so thick there I could hardly close my suitcase."

"Slump? I ain't in no slump, I just ain't hitting."

"The future ain't what it used to be." - Yogi Berra

Peace, Love and Cure,
Lara

Hans is doing just fine. He is cruising along, counting his blessings. We went in for an office visit and a counts check yesterday. Everything checked out okay. We got the go ahead to start ROUND 15 of Millennium today. What a great trial this has been for Hans! We are looking forward to the day we get the all clear. Remember when I hoped we'd clear in 1 -3 rounds? Well, now I don't really care how many rounds it takes. I'm just pleased and amazed that we are moving in the right direction.


My mom called yesterday with very sad news that my grandpa has been admitted to the hospital and is not expected to recover. His whole family is gathered around and right now we are there in spirit! I had to share this picture again. Hans and Papa have a special connection. Hans gave Papa multiple long back massages this summer. They also made their annual raspberry jam together.



One of my favorite memories of Papa was the Christmas I bought him a book of quotes by Yogi Berra. It was really fun to watch him flip through the book, tears streaming down his face through his laughter! I am sure he was remembering some of these quotes straight outta the press.


In honor of my grandpa, I'm going to share a few of those quotes over my next posts. We've got all World Series Fever over here, rooting for SF! We actually WERE rooting for Phillies, but oh, they didn't quite make it. I guess I should explain, we used to live in CA - not far from SF in Santa Cruz. We are obviously huge fans of Astros, but don't know too much about the Rangers, so GO GIANTS!


"It ain't over till it's over." - Yogi Berra

"If you don't know where you're going, you might wind up someplace else." - Yogi Berra

"If you come to a fork in the road, take it." - Yogi Berra

"In baseball, you don't know nothing." - Yogi Berra

"It ain't the heat, it's the humility." - Yogi Berra

Peace, Love and Cure, Lara

Four Years

Hans was diagnosed with High Risk Stage IV MycN Amplified Neuroblastoma four years ago today.The funny thing is - I don't really feel like reflecting on it today! I don't think I will.

Usually I go through this whole thing on anniversary. Usually.

But, actually, today things are going well and I'd rather worry about Halloween and raking the yard, and keeping kids on track with their school work and upcoming events! I guess I'd rather look forward today than look back.

Hans is a beautiful boy. His life has never been the same since his diagnosis day. None of our lives will ever be the same. The medicines and procedures used to save Hans' life have caused him some serious harm. But, I believe with all my heart, that Hans would choose to fight for this life over and over. He rolls with his punches. Kids are resilient, and Hans is an incredible kid.

I hope science can keep the docs one step ahead of his disease. My heart is full of so many hopes and prayers that I sometimes feel greedy. My prayers are not just for Hans, but for each of these kids in this fight.

Today we will do home school, I will start on painting my bathroom, we will run some errands, get our girl to soccer and back, eat some dinner, hang out, play Sorry! And we will celebrate the fact that we are all here, all four of us. And I cannot tell you the gratitude and thankfulness in my heart for that fact - just that we are here.

Peace, Love, and Cure,
Lara

Kiss the Moon Photography

I just wanted to share a pic. Our friend Carla at Kiss the Moon Photography met up with us Friday to take some pictures at a local park. This is the first one i've seen.

Hans's picture day was supposed to be last Monday. We couldn't send him b/c we weren't sure his ANC had recovered. I think we got alot more that the typical first grade shot. Thank you sooo much, Carla. Carla is available for family shots, senior pictures, etc etc... check her out at Kiss the Moon Photography:)

Christmas Cards Now Available online

I wanted to share this link with you. Order your Photo Christmas Cards this year from Cure to the Kids and you can help fund a cure for NB while checking off one big item off your Christmas list. Elle submitted a Christmas card design and it was one of the seven selected for this project.
Check out the link!

ALSO....if you are looking for something fun to plan with the family - think of taking your kids to The Bootstrap Foundation's Fundraiser day at Dewberry Farm! Saturday Nov 13th.... CHECK IT OUT. This event is put on by friends of two other NB families. I think it's pretty sweet that they are doing this for the CNCF!

Peace, Love and Cure,
Lara

Homework "Genius"!

I just have some fun news to report. We have done a 180 on homework around here. Hans went from protesting any form of homework in the form of fit throwing tantrums, to going to the cupboard looking for more! I am loving this 180! Hans now says his homework is easy for him because he's a genius. Whatever it takes. I'll serve him his homework on a silver platter. I just want him to keep up.

I am thankful for Mrs. Parker's amazing diligence. We are benefiting from an extremely gifted and dedicated teacher. She is showing Hans all the care that she shows her classroom students. Our Homebound teachers are all stellar as well...seriously, pinch me! Our Ms. Kathy is going to be out for a total knee replacement until the new year. Poor thing - I can't help but cringe every time I think of her surgery. We are getting an excellent sub while she's recovering.

Hans is burning through several days of math and science this afternoon...right there from his comfy chair, with his food tray and his favorite shows in the back ground, but I guess there are a lot of different ways to learn, huh?

Monday

Not much to report on the Hans front. We just had our quiet weekend with a low ANC...so, we did take advantage of the weekend at home to get crackin' on some more house projects. We all sort of feel like we're 4 years behind around here!

Hans is doing super - just sort of on Cruise Control (right Ashton?)...He does complain of mouth sores a little, and of phantom leg pains...oh, but we'll take it!

I have to give a shout out to our babysitter Katie - who took orders for 18 lanyards from her education major classmates at Sam Houston State. Also have to thank a group of my beading girlfriends who spent Friday here beading with us to get the order filled. Awesome! AND we got a nice visit from Kevin's cousin Jessa who is here in Texas at College - she's a few hours away in Waco, but we were happy to finally get to see her! Elle was able to pack it all in with a b'day party (pictured above with her pal Kelly) and a soccer game. After the game, Elle and Kelly sure made me smile when they told me they get sad at the end of the game b/c they love the action and don't want it to end!

I have a very special request. Our dear friend Patrick just got news of new progression after giving the Seneca Valley oncolytic virus trial a shot. His sweet little family just hopped on a plane to Lourdes, France in search of a healing miracle. Please send this family some special love, prayers, and thoughts this week!

Round 14 Done

Yesterday Hans completed Round 14 of his Millennium. This is Round 14 of a possible 34. Hans is on a Phase II Clinical Trial on this drug. The way the trial is written, Hans is able to stay on the drug for 2 years. A cycle is one week on the oral med, two weeks off. So - if everything stays on track, you should be able to get 17 rounds into a year. We were delayed a couple of times this year, so we can actually only squeeze 16 Rounds into our first year on this med. I don't know if it is time-limited or round-limited, I'll have to ask. We'll cross that bridge when we get there. We are just feeling fortunate that we've stumbled upon a drug Hans' tumor responds to. When we relapsed for the second time back in December 2009, Dr. Maris had a pretty guarded optimism. He suggested that we may be treating the NB as a 'chronic disease' for Hans. Well, here we are ten months into the drug and things are looking good. For the first time during our last office visit, Dr. Maris indicated that the spot might just clear on this med. I always thought it would/could - but what do I know?

Hans' counts are holding their own. We got counts locally yesterday. His white count is actually quite low with an ANC at 500. His HGB is 11.9 and plts are fine about 250. That low ANC is the culprit for keeping Hans in a homebound school program on this med. But, I do think that Hans is fine with being homeschooled. I sure do miss his opportunity to socialize with the other kids, but ultimately, I just hope he can keep up academically!

That's the scoop for now.

Lara

10-10-10

We are back into the swing of things here at home.

It is nice weather this fall. We've been able to spend some time working around the house, on the yard, decorating for Halloween, going to soccer games,
etc etc. Kevin is getting his 'old' road bike out and cleaning it up this weekend. It's all the regular stuff of life that most families are doing, but we always feel so extremely grateful to be able to do these mundane things. I have this 'blown away' feeling after the news of those scans. I just really feel like we are in the right direction, in the right place, and it's all such a mystery of Science and Biology and God, and I am just so grateful! I feel like we can breathe. I have this amazing feeling that we are in the right place, for us, for Hans, for now...

I ordered Hans a Halloween costume with red light up eyes - it's a random costume called "Fade In/Fade Out Unknown Phantom" Costume. I'm just glad that Hans still wants to dress up. In some ways he is so "mature" for all he has been through that I wouldn't be surprised if he just said, "I'm not dressing up." He is getting really into it, and he has agreed to dress up for Halloween until he turns twelve - then he's done, apparently. He actually took great care in helping us set up the Halloween lights and he's the one who thought of getting the three-way plug in and ran to get it from his room for the job. He's already thinking ahead and said that we need to get more Thanksgiving and Easter Decorations (guess he feels we are okay on Christmas).

With all her big hair, Elle is going to be a Lion for Halloween. A group of her girlfriends are creating the whole cast of the Wizard of Oz around that idea. Fun!

Oh, we can keep voting! The Pepsi Refresh Challenge is still going on: Support Kids' Cancer Research has submitted their application once again, so we can keep voting for them HERE or Text* 102462 to Pepsi (73774)!

Guess that's about it for now...
Lara

Spot Very Faint

Hi,
Just got done with our Office Visit. The big news: CT scan Negative, aka normal. I swear I figured that was the case. Our techs cheered yesterday at the end of the scan. I didn't figure we got all that just for being good patients. The techs really aren't supposed to say anything, and I really try to NEVER ask or NEVER interpret their facial expressions or anything. But it was hard not to read a little something into the cheering!

The MIBG was completed this morning, and it is still very faintly positive right on the top of the skull. Dr. Maris told us today that it is very difficult to detect the spot. He said that if he shows the scan to another doc (a resident) he'll say it's a negative MIBG scan. But he also said that since they've been staring at it so long now (10 months now) they can detect it. We talked about what's next... and he is so strongly pleased with where we're at he's pretty much recommending that we stay the course with this med for up to the full two years or 14 more months/or 21 more rounds or so... He actually seems to think we are going to clear the spot if we keep it up. He is happy with the result thus far!

We are hanging out in the waiting room waiting for our next dose of MLN8237. One of the nice things about being on a clinical trial like this is that the medication is prepared in house, just for your child, and it's handed right to you. (Oh, and it's free, which is nice! But, really - that's the only thing about a clinical trial that is free - the rest of it goes through your insurance just like any other therapy. I think I used to think the whole tab would be picked up by the trial. Not the case, which is probably a good thing - keeping costs of trials down.) Sorry about that tangent, I get asked about that every once in a while so I thought I'd throw it out there.

That's about all for now.
Thanks to Kelly and her family for taking care of Elle in our absence, and thanks to Michelle for taking care of our animals!

Peace, Love & Cure,
Lara

Scanorama

Hi,
We are in Philadelphia. It's coldish and rainy here but not too bad so we are not complaining.

We got in LATE last night and today Hans got accessed for a lab draw and an MIBG injection and got a head CT. The day went very well. Hans is always a rock star getting his port accessed! I am not sure if I've described this process here. Hans's port is just under his skin over the left nipple. Getting it accessed means a nurse sticks a 3/4 " long needle into it. The needle is attached to a plastic head that tubing fits into. After he is accessed, he's all taped up with a dressing. When he gets deaccessed, the tape comes off and the needle and tubing is pulled out. Labs can been drawn through the port, and meds can be given. I think most kids with a port use a numbing cream or freeze spray before getting accessed. For some reason, Hans does not. Hans has had this port since he was four years old. He has never wanted any freeze spray or cream. He has always insists on taking it 'like a man"! On days like today when we are in an oncology clinic, Hans usually does really well. When we get accessed in the ER or, say, an ambulance, the accessing can go less well. Practice makes perfect. I think Hans is a pretty easy stick. We are kinda proud of him about this. Not usually a single tear. I'm just glad this doesn't have to be traumatic, since we have to do it at least monthly!

Most scans and other procedures go well for Hans as well. This Head CT today was a breeze. He had to be without food this morning, in case the IV contrast made him nauseous, but all went well. The CT is by far the best scan! Fast! No Sedation! Easy! And, we found out today that when you just get a head CT - no oral contrast is necessary. Hooray. This is good because drinking the contrast is icky and it takes like 3 hours! So - we had a pretty 'easy' hospital day today. in and out in less than three hours. MIBG scan and follow up office visit will all take place with Dr. Maris tomorrow. Needless to say, we are wishing up stars that these scans are as good or better than the last.

We had a special night. We were able to meet up with the Tenneson's for an early dinner. This sweet family lost their brave Braeden to NB. We've kept in touch and were finally able to meet up on a trip back. They are sweetie pies.

Thanks for checking up on Hans. Hope this is a good scan week all around. Our NB buddy Elijah is up here getting scans and Patrick is getting them back at TCH...

Peace, Love & Cure,
Lara

Perfect Days

We are fortunate to have nothing to report but some perfect days. Hans has been doing school, helping us in the yard, planting flowers, laying mulch, making soup! It's all good. Elle is going a mile a minute with school and extra curriculars and now working - she had her first job babysitting this weekend, thanks Shannon!

I'm sure everyone in the world has heard Arms Wide Open won the $250,000 for NB research. Yay! Thanks for your votes. I hope there are few more Pepsi grant applications that come through for us in the future. I know that Support Kids' Cancer Research has submitted their application once again, so we can keep voting for them HERE or Text* 102462 to Pepsi (73774)! NB probably has hundreds of different parent fundraising organizations - I sure like it when we all work together for the greater good.

I was posting nearly every day during September for Pedi Cancer Awareness month, I don't think I'll have as much to say this month, so we can go back to a couple/few times each week. We go to Philly this week. I am praying so hard for great news that I can't even tell you! I am praying for Hans and our friend Patrick who each have scans this week. Thanks for joining me and keeping these two and all the children in your thoughts and prayers.

Peace, Love & Cure,
Lara