Logan's Battle with LCH

07/22/08

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"Your child has a tumor on the side of his skull that has entered the brain cavity."

We received this news regarding our 2 year old son on 4/20/05. It was an agonizing 9 days later before we knew the extent of the disease, and could put a solid name with it: Langerhans Cell Histiocytosis (LCH). An extremely rare disease (1 child in every 200,000 born, usually children, so maybe 1,400 cases in the whole U.S.), LCH can be deadly or cause life-long disabilities. Kids are treated with chemotherapy, and have a 50% chance of recurrence even if they're successful in forcing the disease into remission. Since the disease is so rare, it receives no government funding for research.

This website follows Logan's progress, shares info regarding the disease, provides tips to other parents, and raises funds to search for a cure.

Have you just been diagnosed? Read this...

Most Recent News

Friday, 6/20/08

Sorry for the long delay. Aside from some challenges we have been doing OK. Logan is fighting a virus, but seems to be fine otherwise. His latest office visit with Dr. McClain was uneventful. That's a good thing!

Logan's Make-A-Wish trip is fast approaching, and we are all looking forward to our trip to Disney World! To keep Logan's interest up, the Make-A-Wish team sent a limo out to pick us all up and bring us into the office for a "small surprise." They had mentioned that an anonymous donor had given his collection of Star Wars toys to Make-A-Wish with the intent of giving them to one deserving child. For those of you that don't know, Logan is a Star Wars Nut, and his wish is to attend "Jedi Training" at Disney World. Well, Donna and I were thinking maybe a dozen or so Star Wars figures. We were in for a big surprise.

Princess Leia (a dressed-up Make-A-Wish staff member) met the boys at the door. They dressed Logan in his very own Jedi robe and handed him a light saber, then took him in to see a counter full of Star Wars toys. Both Logan and Erik ran in to check them all out, and were thrilled to name each of the characters and ships. "Are all these for me?" Logan asked. "Oh yes, and all these boxes on the floor, too." The entire office was stacked full of box upon box of toys. We were surrounded! Most we had never seen before, which is truly remarkable, for I thought we had seen every possible Star Wars toy...

When we finally left the office, the limo was packed so full of toys that Logan had to ride home on my lap!

The generous donor (Thank You, whoever you are!) is probably horrified. The collection is likely worth thousands of dollars. However, Logan and Erik see them only as magical toys, not as collectibles. We have let them open a few of their favorites. Their imaginations run wild, they play for hours, and believe they are the luckiest and richest children in the world. Thanks Make-A-Wish! And Thank You to the wonderful donor!

Tuesday, 4/22/08

Walter Dawes rode in the Big Fix 500 this past weekend to raise money and awareness for histiocytosis! We all went out to cheer him on, and he was really rolling inside the Velodrome in Houston. Unfortunately, at mile 330 another rider who was keeping Walter company lost traction and slid under Walter's bike. Both riders went down and Walter fractured his collar-bone. We are SO PROUD of Walter's commitment and effort to the histio cause! Thank you Walter! We hope you heal fast and are back in the saddle soon.

The boys are doing well. They've been fighting infections, but the drugs are winning. And the "Magic Spot of Pain" on the side of Logan's head has disappeared. Here's hoping it was just coincidence.

Grandma has been struggling with her food and water intake, so we're all very worried about her. Add her and Donna to your prayer list. Donna's stress level is overwhelming at the moment.

There's a strange irony in taking the same drugs as your child did for his rare disease. As you may know, I've had my share of medical challenges this year. Started, I believe, from a drug allergy to Bactrim. Most every histio child has been on Bactrim to prevent pneumonia while taking chemo. Now, 4 months later, I'm on Prednisone to help clear up the mess left behind from everything else. Prednisone is part of the front-line therapy for LCH-III. Now, I've never had eating issues or weight issues before (unless you want to classify 'thin' as a weight issue). You all laughed at your kids when they were on Prednisone and asking for cheeseburgers at 3am. It took about a week, but let me state for the record, that little switch gets flipped in your head and you're ready to EAT!

Five or six meals a day seems like a good thing to me. As an example, last week I ate a giant dinner, then took Erik to karate. On the way home I told Erik we were going to Arby's. "Great!" is always Erik's response anytime we go out to eat...a rare occurrence for us. So I sat and ate another meal an hour after the previous one. When I finished my last bite, Erik looked up at me and said as only a 7 year old could say, "Dad, are you going to go up and get another meal to eat?" To be honest, I was really thinking about it, but the new feeling of frequent hunger is a bit scary at times! I passed and said, "Maybe we should get home." Tonight is karate night again, though...

I am, by the way, feeling MUCH better lately.

Thursday, 4/10/08

All three of us are happy to have Mom home from visiting Grandma. Grandma is stable, and in better condition then when Donna arrived to see her.

Our other issue, if you remember, was the side of Logan's head. The week of anti-inflammatory med's didn't seem to help a whole lot. Strangely enough, however, the 'magic spot' of pain has moved from over his ear to just behind his eye. It doesn't seem to bother him, and he will only comment if I ask him about it. We're not excited about putting him through a whole MRI for something so...vague. At the moment we are waiting.

Erik sounds like he has a cold or allergies. Other then that, we are doing OK.

More History Can Be Found in the Journal

Announcements

Learn about Histiocytosis, in your underwear!

The 7 part (1 hour total) series "LCH 101," presented by Dr. Ken McClain, is now posted on YouTube. Watch it right from home!

The 2 part (20 minutes total) series "LCH in Newborns," presented by Dr. Sheila Weitzman...

The 4 part (40 minutes total) series "An Overview of Histiocytic Disorders," presented by Dr. R. Maarten Egeler...

The 3 part (30 minutes total) series "Bone LCH," presented by Dr. Sheila Weitzman...

The 3 part (24 minutes total) series "Endocrine Problems in LCH," presented by Dr. Vasanta Nanduri...

Just added, the 3 part (28 minutes total) series "Central Nervous System Involvement in LCH," presented by Dr. James Whitlock...

You can access all videos here.

 

Logan is raising money for the Histiocytosis Association and research via The Big Fix cross-country bike ride. To make a secure online donation, click:

DONATE

Logan put all his Note Cards and Greeting Cards on sale in his Gift Shop.

Proceeds benefit Histiocytosis research. Check them out here!

Having a biopsy?

If you or your child is having a biopsy of a suspected histiocytosis site, please Please PLEASE contact me to get a portion of that tissue donated to Dr. McClain for his histiocytosis research here at Texas Children's Hospital. This is one thing that could really help in the battle against histiocytosis.

There's no cost involved, and the tissue would normally just be thrown away.

Dr. McClain held a press conference at Texas Children's prior to leaving for The Big Fix. Watch the video here (thanks to Channel 13).  Two handsome boys figure prominently in it, and I wasn't even directing the camera!

 

If you live in TX or LA, we have Kroger Share Cards. A percentage of your grocery bill will be donated to the Histiocytosis Association of America. Email us with your address, and we'll send you a handful. Pass them out to friends, family, or anyone that shops at Kroger.

If you don't live in TX or LA, contact your local grocer and ask if they have a similar program to benefit the HAA. If you'd like to know how we did it, send us an email.

Summary of Major Events

4/20/05: CT scan shows Logan has a tumor on left side of his skull that has eaten through the bone and appears to have entered the brain cavity. Neurosurgeon says that surgery would be extremely difficult and very risky due to location of tumor in relation to major nerves.

4/22/05: Biopsy report suggests Langerhans Cell Histiocytosis (LCH). Question is, is it anywhere else?

4/29/05: Extensive scans reveal LCH is isolated to the skull and possibly skin on Logan's head. Logan begins 6 weeks of chemotherapy (Vinblastine) and steroid (Prednisone) treatment.

6/13/05: Scans show tumor has shrunk by 60% Logan starts another 6 weeks of Vinblastine and Prednisone.

7/21/05: New scans show "No Change." Most LCH cases are resolved by 12 weeks of treatment (NOW!).

8/5/05: Logan's Vinblastine and Prednisone continue once every three weeks, and now another chemo drug (Methotrexate) is added. Three doses, every other week, for a total of 6 weeks.

9/21/05: Scan's show only a 10% improvement. Logan is moved to a different chemo drug 2-CdA...a salvage therapy for kids who don't respond to traditional treatment. All other chemo and steroids are discontinued. This treatment is 2 hours of chemo per day, 5 straight days, once a month, for at least 4 months.

11/11/05: We're now Texans! We moved from Florida to Houston so Logan could be treated by Dr. McClain at Texas Children's Hospital.

12/5/05: MRI of 12/1 shows additional 40% improvement. Logan starts round 3 of 2-CdA.

2/20/06: MRI shows additional improvement, but persistent disease. Logan starts round 6 of 2-CdA on 2/27/06.

3/20/06: Dr. McClain feels the main tumor should now be gone. Logan starts maintenance therapy of 6MP (Oral chemo given at home). Will continue for 1 year.

4/10/06: 6MP appears to be toxic to Logan's liver. He's switched to Thioguanine as maintenance chemo.

5/1/06: After detailed research it's decided that Thioguanine is NOT a long term solution, since it's not intended for maintenance therapy. Logan is temporarily switched back to 6MP at a slightly lower dose.

5/8/06: The wrong CT scan was done, so we know nothing more about Logan's current condition.

8/30/06: 6MP (chemo) dose is increased to 3/20/06 levels. Happy 8th Anniversary, Donna!

9/27/06: MRI & CT from 9/25 show great news! Temporal (skull) bone is healing well. Activity in left mastoid is essentially gone...thought to be only scar tissue that continues to decrease. Pineal cyst (in brain) approximately 20% smaller. No other lesions seen. No abnormal activity in brain. Next scans will be 6 months from now. All excellent news. Only bad news, 6MP (chemo) dose is too much for Logan's liver, so we will decrease that.

4/18/07: MRI of 4/13/07 shows more good news, and Logan is given the all clear to stop all chemo and have his port removed! Yahoo!

4/24/07: Logan has the port removed from his chest. Histiocytosis, we never want to see you again!

12/5/07: MRI of 11/26/07 shows continued improvement. Yeah! Logan's first Auditory Brainstem Response (ABR) test "...may (show) a subtle sign of auditory brainstem pathway disorder."

3/13/08: CT of 3/12/08 show nothing out of the ordinary on Logan's right mastoid (where he has complained of pain). Great news! There does seem to be some inflammation on Logan's right jaw-bone where it connects to the skull, perhaps from a recent injury (??). We are to give ibuprofen to try to reduce the inflammation. If that doesn't work after a week, we'll be in for an MRI. Here's to it being something so simple...

Upcoming Events & Things to Check Out

Almost the entire National Conference on Histiocytic Disorders was video-taped this past August. Soon it will be available for you to watch from home!

Watch this space for future updates!

The video Trailer from THE BIG FIX cross-country bike ride to benefit Histiocytosis is now online.

YOU can raise awareness about Histiocytosis by simply watching the video and ranking it 5 stars. Tell all your friends and family to watch, too!

 

For those of you more fitness minded then me(!), check out www.Team-Histio.com and see what's happening in the triathlon world for histio.

The mission of Team-Histio.com is to provide increased awareness of Histiocytosis and raise funds to be donated to the Histiocytosis Association of America through triathlete participation and family and friend fundraising

"Saving a child, one mile at a time!"

Hike for a Cure 2008

September 28, 2008

Half Dome, Yosemite, CA

A huge annual event to raise money for histiocytosis research...Hike for a Cure is one of the most successful fundraisers EVER! Learn more at

www.HikeForACure.com

Watch the story of one boy's battle against histiocytosis:

Zachary's Battle

 

Zac's Memory Chests

After losing their beautiful son to histiocytosis, this family decided to help other families remember their loved ones who have lost their battle with histiocytosis.

Read more about the  family keepsake "memory chests" they custom build. It's their way of supporting the histiocytosis community.

 

 

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This site was last updated 06/20/08