Some Pics

Elle and Friends at Kamp Kickapoo

Marla, me and sheri in cabin

me and Elle at camp

(for vickie!) Elle (2nd girl back) on Water Weenie

Elle and Caley

Hans at Cole's Pump it Up party!
Hi,
Just want to let you know that Hans is doing great. He is getting used to his new teeth, though he will say that he likes his old teeth better. We went in and saw Dr. Russell on Thursday. She told me that Hans is by no means alone in having serious dental problems. In fact, some NB kids, when they have certain therapies at the 'right' stage of development don't even form permanent teeth buds. It's a very brutal therapy. Some kids come through it with no dental problems, but many have issues. And, the kids who have to battle relapse just go through that much more. We actually don't have xrays to see if Hans' permanent teeth have developed or not, we just have to wait and see. Yikes! Of course, the Oncology dept is very fccused on making tumors go away, so they don't always have a lot of time for hand-holding around other, less crucial issues. At least now Hans is eating normal lion-cub diet. When he couldn't do that for a couple of days on his teeth, I was pretty freaked out about him not having enough reserves to make it through the night. So, we've been stress-dosing him with his steroids, and will finally start to wean him
off. Hans actually isn't scheduled to go back to TCH until after we go and do scans in Philly 6/23 and 6/24.

We have another round of ABT-751 under our belt, with little or no issues. There are some docs and parents out there starting to think that the ABT751 is the wave of the future to keep kids in a first or second remission. How cool is that?

We have been busy around here with end of the year stuff. Elle has four more days at Glen Loch. I am going to miss her being there! She'll be at Wilkerson, a 4th/5th Intermediate next year. I keep running over the logistics of everything. It's going to be a little tricky. Glen Loch is close and we can easily bike there. I'm going to miss that a lot! We are working with the staff up there to get Hans set up for Kindergarten there in the Fall. He's going to do a full Diagnostic. I am hoping they will have some kind of aide available to help keep an eye on him, and watch for signs of Adrenal Shock (he seriously seems more sensitive to it while on the ABT-751 but maybe it's just chance). But, they might actually recommend a homebound program. I have no idea, I am just hoping that they are able to do the diagnostic sooner rather than later! I think we'd all do better if we had time to prep Hans for what to expect in the Fall. He's says he's ready for Kinder though.

Hans is thrilled that our community pools are open for business this summer! He has a slow and steady dog paddle that works for him after he goes off the diving board. I guess I just have to 'advocate' for him with some of the lifeguards. He can stay afloat and get to the side, just not quite as quickly as the other kids. I really don't think it's anything to have to kick him out of the deep end over, tho. He also is so funny, he asked me to buy him a back scratcher - an item long on his wish list. He is pretty cute ooohing and aaaahing while he scratches his back now.

I'm going to try to sign Elle up for a 6 week course in Baton Twirling with some of her friends. This isn't her usual style, but hey, a girl can't have too many skills. Other than that, she'll do a soccer camp the first week of summer at Rice, and she hopes to be in Washington for Grandpa Dean's golf camp again this summer...

The golf tournament yesterday was pretty fun. Scott, Becky, Athena, Tracy and Shannon were all working so hard. We just showed up to have fun! I want to thank my friends Carmen, Ginger, Michelle, Vickie and Dana and their families for coming out to support that event! The guys got to golf and then all of us hung out poolside and the big kids did paddleboats. Very neat event! But, sorry, mom, I totally forgot my camera. I think Carmen/Jim may have snapped a couple shots. Here finally, are some other pics.

Upcoming Amazing Grace Golf Tournament

I wanted to share this announcement with all of you from the Houston CNCF. I am so excited to be planning to spend the evening with good friends from both The Woodlands, and our TCH NB 'family'.

We’d like to announce the 3rd Annual Amazing Grace Golf Tournament. We hope that many of you can come out to join us on Saturday May 30th, 2009 at the Houston Oaks Golf Course in support of children and their families fighting Neuroblastoma. www.amazinggracegolf.org

Neuroblastoma is an aggressive Pediatric Cancer. On Average, 10 – 20 Houston-area youth are diagnosed with this cancer each and every year. Stage IV Neuroblastoma claims the lives of nearly 60% of children diagnosed with the disease. Little 2 1/2 year old Gracie Scasny, a bright and funny girl, lost her fight against this disease in 2006. The golf tournament is lovingly held in the memory of her and her many friends. Please tee up to join us in the fight against this beast.

The Amazing Grace Golf tournament is set amongst the picturesque rolling hills of Hockley, just west of Tomball. Our tournament is special in that it welcomes whole families out for an entire evening of fun. Two tee times are followed by a crawfish boil dinner, silent and live auctions, a brief presentation by a TCH renowned Neuroblastoma researcher, Dr. Heidi Russell, followed by Stephanie Wade a long–term Neuroblastoma survivor and a stunning Neuroblastoma warrior, Ms. Anna O’Conner. We will round out the night with a live Zydeco Band and Dancing.

The whole community can get involved – as a sponsor, a volunteer, a golfer, or by simply attending the dinner and auction portion of the event. (Tickets to the dinner are only $25.) Children can enjoy fun activities the evening of the event including swimming, fishing, baseball, horseshoes and a playground…

All monies raised will be used to fund Clinical Trials and to provide ongoing parent education through the Children’s Neuroblastoma Cancer Foundation. Thank you for your support! www.nbhope.org

For additional information please contact Houston@nbhope.org

Kickapoo Kamp

Hi -
Sorry to go so long b/w posts! I was running around busily this past week. I got to help Carmen celebrate her 40th b'day with a couple of fun events. Our usual Mom's Night Out, and then we pulled off a surprise b'day lunch at her mom's Friday. Happy Bday Carm! I seem to hit it off really well with Tauruses - so we have a lot to celebrate this week - My BFF Kerry turned 38, My dad turned 62, Papa turns 89! And Joshua turns 2. Happy b'day to all of you. You are so fun to be with - it must be in the stars that we get along so well!

This past weekend Elle and I joined our friends Sheri and Caley for a mom/daughter weekend at Kickapoo Kamp in Kerrville Texas. It was pretty AWESOME. I wished all our friends could have joined us for the fun. We rode a water weenie (a big banana pulled by a speed boat), did a huge water slide and I fired my first rifle (didn't do so great/can't close my left eye) but I got a bulls eye in archery:) Elle and I mostly had a very relaxing girl-time in the pretty Texas Hill Country. We slept in cabins and all meals were prepared for us. We did have some rain on Saturday morning, so we missed out on the horseback ride, but we took a nice hike on Sunday before packing it in. We both want to go back next year. If you are looking for a first rate camp for summer - check it out at www.kickapookamp.com. Kevin and Hans hung out back at home and were so very sweet about letting the girls go off and have all of the fun!

Hans has been doing GREAT. And then today, a little not-so-fun thing happened. He had a dental surgery scheduled for one cap on the front tooth. And, he did, in fact, get a few more. (I actually can't even bear to type out the number of caps he got today, not quite yet!) We have been trying to schedule this surgery over the entire past year. It kept getting cancelled due to situations like - being inpatient for chemo/being in Philly for scans/or being inpatient for Rota virus. Today we finally were able to go through with the surgery. When the dentist got in there and did xrays, there was a lot more going on than they had originally thought. It was a little bit brutal, and I had one of my signature emotional breakdowns. UGH. But, as usual, the staff down at TCH is there for us. I actually just picked up the phone and dialed my pal, Breanna, from child life. She was there within five minutes and sat with Hans and I for at least an hour and walked us into a stable recovery. Hans was having some pain after intubation. I haven't actually seen him like that before. A huge thank you to Breanna for going above and beyond her job description. She's supposed to be there to support the kiddos, but today she was truly there for me.

I owe you pics, and I will try to post tomorrow. I'm going to try to get to bed early. I was up way tooo early with a surgery arrival time of 6 am today. Hans is doing better now and he is enjoying a new Wii game with his doting daddy. Thank you, Kathryn Hallberg, for sending Hans such a sweet gift!

Lara

Splint is off

Hi,
Just wanted to let everyone that Hans had good visits with both Endocrine and Clinic on Thursday. Actually, the Ednocrinologist gave us a prescription for Glucagon - this is another immediate line of defense for any possible future Hypoglycemic events. My friend Tamiko had told me to ask about it for Hans, and then, just as it was on the tip of my tongue, the doc offered it up, actually puzzling himself with why he hadn't thought of it earlier. I do feel a little better about this. The Ambulance is FAST here, but it's nice to have a back up if we're ever not right here, or have no phone service in a power outage, etc. Glucagon is safe for parents to deliver and is an immediate dose of sugars to the blood stream. Yay!

Also, Hans just looked great up at the Cancer Center. Dr. Russell took a good look at him and told me we could ditch the Splint. Hooray! Hans is hobbling around pretty well. I am just a bit leary to let him back on the bike yet. That kind of pressure to the center of the foot can't be good after a break, - can it? He also can't walk too far on it. So, I carry him or use a stroller if we've got far to walk.

Elle has decided to 'go for it' and she'll be playing competitve soccer for the first time next Fall on the Texas Rush U11 Swoosh Pool. She's played for 6.5 years already, but this league ups the intensity. She'll have professional trainers - most of which are former pros from Europe, and she'll have another night or two a week of training. It's a big commitment, and we are acutally just a little nervous that it's maybe too much/too soon. Kev's mostly nervous that she'll have to let some other things go. But, we'll do our best to keep her involved in her interests. That's the scoop.

Hope all the mamas out there enjoy their nice day tomorrow. I'll especially be thinking of all the lovely ladies celebrating the day sans one of their precious bebe's.

Lara

School's back on

Hi - We found out late Tuesday afternoon, that since the CDC changed its recommendations, Glen Loch was back on for today. I missed having my little helper around today! She helped me stain the front deck on Monday! I had more projects in mind for her too. Ah well. Hans and I can still get some things done around here. It seems like everything needs another coat of paint. ugh. I have to be in just the right mood for painting - and it doesn't strikke too often.

Hans is walking around pretty well, still in the splint while we are at home, but he is allowed to wear tennis shoes when we go out. He struck a pretty good deal there with Dr. Russell. We'll go back in again in the morning, but the foot does still have some bruising, so I wouldn't be surprised if Dr. R. made him use the splint for several more days. We'll see! We are also going into Endocrine tomorrow for a regular check up.

I was surprised to get an email on Monday inviting Elle to a Girl Scouts award ceremony last night. We just learned she was in the top ten of cookie sales for her service unit. She came in at no 6 with 500 boxes sold. The next several girls on the list sold 500 - 600 boxes and the top seller sold 1014! Wow - I don't know how you do that. I told Elle we'd have to drop a few other activities if we wanted to double her sales. She was very sweet about it all, and said "they practically sell themselves." Thanks to all our buyers out there. How fun! I also want to congratulate: Brittany, Kelly, Vika and Carsen, all girls from our troop who sold 300 or more boxes.

Somehow I forgot to mention that May 3rd marked one year into relapse. What a milestone to pass. I remember it was very emotional for me to cross the 8 month point. I guess I was too busy on May 3rd to to think about it too much. Congrats to our friends Joey and Sylvia who received their first communion on that day. Quite a happier occasion to mark!
Lara

Third Spring Break!?!

Wow - what are the chances - with only 800 some cases worldwide, 40 in Texas, that Elle's Glen Loch Elementary would be the first to close in our district - with 3 suspected cases of the H1N1 or swine flu virus!?! We don't know who the kids are, but do know of several who have been sick. I hope that they are each able to recover quickly. I guess my first thought is that it may just have been a blessing that Hans' injury has kept him out of the hustle and bustle for the past week or so... So far none of us are getting sick. School will be out for a minimum of one week.

Hans is doing well! For the last couple of days he has been wearing out one of the Shrek Soundtrack CD's and seriously perfecting some of his signature dance moves. I may have to post another video soon.

For an Elle update - she selected the Clarinet as her instrument of choice next year, and she tried out for her soccer league's competitive division this weekend. She did get an offer, but now she is debating going for it, or playing recreational again with her friends from this past team.

Off to a block party - but I wanted to post a quick note about Swine Flu!

Take Care - Lara