Logan's Battle with LCH

02/08/10

Home
Guest Book
Tips for Parents
Photo Gallery
How To Help
Links
Journal
Contact Info
Logan's Gift Shop

 

"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

Monday, 2/8/10

MRI results show no issues. GREAT NEWS! Logan is looking forward to his birthday party this week... seven years old! Donna and I remember when we were worried if we were going to see his third birthday. They grow so fast. We're just happy that he's healthy!

Tuesday, 1/26/10

Long delay, huh? We are still all here. Lots of things have happened in the last year, but we're all still here! Logan is doing well. He just had a follow-up MRI and we are awaiting results.

Thursday, 11/13/08

No news is good news. We have been doing well, all settling into our new respective roles. The boys are doing extremely well at school, and Logan won 1st place in the Reflections art contest given by the school PTA. He entered one of his many photos he loves to take. Anytime the camera comes out, Logan runs up and says, "Can I take a picture?" He's getting really good at it, and his entry now goes to the district level.

The boys are fighting colds, as am I, but otherwise doing fine. Both boys are back in soccer, and I am a first time coach. Mind you, I've never played soccer in my life; but I've learned a lot and the kids have fun, which is what it's all about. Erik and Logan each have been awesome this season. Last week I had Logan sub on Erik's team because we were short a few players. Logan had already played a full game with his team, was fighting a cold, and then was asked to play at his brother's game with kids that were 2 years older then him! His answer? "SURE!" He did Fabulous, and more then held his own! Go Logan!

Some Houston area histio families attended an update on Dr. McClain's and Dr. Allen's histio research, which was very interesting. They are so busy at their histio center now...it's amazing! The number of new histio patients they see has sky-rocketed to over 100 NEW cases a year...not including the continuing patients they see (like Logan) and the flood of consultations they do.

I hope you're all doing well. Sorry I've been so slow in responding to some of you. To be honest, I've been overwhelmed by all that's been going on at home this past year. Be sure to stop and reflect on what you're thankful for during this holiday season. Keep things in perspective. I'm thrilled to be alive, for my wife/best friend,  and for our fantastic boys and their good health! I hope you are as lucky and as thankful as I am!

Saturday, 9/27/08

Logan, Donna, and Dr. McClain participated in a fashion show and auction to benefit Texas Children's Cancer Center on 9/25/08. It celebrated the survivors as well as their support team. Five children were chosen to be in the event, and Logan was one of those five. Logan is normally a very casual dresser...T-shirt and shorts. As you'll see, they chose a suit and tie for him for this event. When he came out all dressed up at the fitting before the event, he was so proud. "Dad, can I wear this suit home?" Check out his run-way appearance with Donna, Dr. McClain and Mital, his social worker from TCCC. He looks so serious in the video, you may not recognize him!

It was also at this fund-raiser that I was introduced to the following poem, written by Terra Phillips, who had been treated at Texas Children's Cancer Center. She was 14 and undergoing leukemia treatment at the time. Parents, I wonder if you see your own child as you read.

The Warrior is a Child

Gazing in the mirror
I see a warrior's face.
Fully clothed in armor,
No fear and no disgrace.

A tear it never offers,
A smile it always gives,
No sadness does it show,
But what life it lives.

Needles going in
As blood is taken out,
But still no sign of pain,
No cries to make you doubt.

Each day you see this person,
And think that they're so brave,
Each day you see us laughing,
The tears are ours to save.

So when you see our armor,
And think we're calm and mild,
Remember this one thing,
The warrior is a child.

- Terra Phillips

 

Sunday, 9/14/08

Remember when Logan had his Make-A-Wish trip? Our local news channel did a story about Logan's wish. Our thanks to CW 39 reporter Steve Simon who did the story and gave us permission to post it here. Click on the photo below to watch for yourself.

Saturday, 9/13/08

The worst of Hurricane Ike has passed for us, and we're doing fine. A little water in around a few windows and doors, but nothing serious. The boys had a 'campout' under the stairs on an inflatable mattress and slept through the whole thing!

Friday, 9/12/08

Thanks for everyone checking on us. For those of you who don't know, we are in the cross-hairs of hurricane Ike, which is expected to make landfall in about 9 hours. We are on the west side of Houston, so we aren't expected to get the storm surge that the east-side is expecting. We should only get rain and wind. So far...just wind. We've made all our storm preparations, and are now locked inside the house. I'll post again when the storm passes, utilities permitting. We're not too concerned at the moment. After living through Charley just two miles from the coast in Florida, this should be a little less stressful. I just wish these houses in Houston were built for hurricanes like the houses in Florida were!

We've all been doing well. The boys are back in school (2nd grade and Kindergarten), Donna started working again after an 8 year break, and I have the new and very unfamiliar position of 'House Dad.' It's been fun so far, but always so much to do! Hope I get better at it soon!

 

Tuesday, 7/29/08

We have returned from Logan's Make-A-Wish trip, and have sufficiently recovered to tell you a little about it. As a reminder, Logan is a Star Wars Nut, so it was no surprise that his Wish was a trip to Disney World so he could attend Jedi Training School.

Our accommodations while at Disney were at a delightful place called “Give Kids the World.” All the guests face similar challenges as our family, and the staff was absolutely fabulous. The children and fun are the focus of everything. Our host told Logan a “house rule.” “Logan, you can have ice cream anytime you want, even if your parents say NO!” This immediately became Logan’s favorite rule of the entire trip.

Logan’s big day began with his most treasured wish: Jedi Training. With a light saber in hand and dressed in his Jedi robe, he was trained to battle the forces of the Dark Side. This culminated in one-on-one combat with the evil Darth Maul. Logan was absolutely thrilled!

Next, Logan was whisked off to a parade with every Star Wars character you could imagine…not just to watch…he was IN the parade. The whirlwind continued with meeting movie stars, the director of the new movie (who sketched a special drawing for Logan), and dozens of characters in costume, who all stood and talked to Logan as the VIP. We were all blown away, and Logan had a million dollar grin all day!

Logan loved his “Magic Button,” which let us avoid the lines in the park. He was able to ride Space Mountain four times! There were many times during Logan’s treatment when we wondered if he would ever live to see his fifth birthday. We are overjoyed just to see him run. Words can’t describe the feeling you get as a parent when you hear your child scream “This is the greatest ride in the WORLD!”

We were treated to a “Fourth of July Sneak Peak” fireworks celebration on our final night. We stood in awe for the spectacular show. After the grand finale, Logan looked up and said, “WOW! That was a once in a lifetime experience!”

Thank you Make-A-Wish, and everyone who made our son’s wish come true!

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. 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!

1/23/10: MRI shows nothing out of the ordinary. Great news!

 

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!"

  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.

 

 

Home | Guest Book | Tips for Parents | Photo Gallery | How To Help | Links | Journal | Contact Info | Logan's Gift Shop

This site was last updated 02/08/10