Successes

Reading through this page will sound negative at times. I just want to give thanks up-front for the great successes we've had.

Journal

Most recent stuff first!

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!

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.

Friday, 3/21/08

The three boys have been home alone this week. Donna is in Michigan taking care of Grandma. We are having fun, but missing Mom. We haven't had to resort to eating dirt or wearing dirty clothes. I don't have the cooking skills of Donna, but we're doing OK. And laundry, well, all those college laundry skills are coming back quickly!

Thank you all for your comments in the Guestbook! They've been great, and we really enjoy them!

Thursday, 3/13/08

The latest CT scan results are in. There is nothing out of the ordinary on Logan's right mastoid. Great news! There does seem to be some inflammation on Logan's right jaw-bone where it connects to the skull. Dr. McClain said it looks like it might be from a recent injury (like a bump or bang??). Logan hasn't mentioned one, but who knows? For now 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 to see if there is a soft tissue component to the swelling. Here's to it being something so simple...

Thanks to everyone who sent their wishes and prayers to Logan and our family. Y'all are the greatest and really cheered us up!

When it rains it pours... first me, then Logan, and now Donna's Mom in Michigan is struggling with her health. Donna (and maybe the rest of us) may be making an emergency trip to visit Grandma. Just a little chance to breath...that's what we wish for...a little chance to catch our breath...

Friday, 3/7/08

It's been a challenging new year, and I've been battling my own health issues. Life has a way of throwing you curves.

Logan started this week with the words that terrify every LCH parent, "My head hurts here when I touch it," while pointing to his right mastoid area (around the ear). As a reference, Logan's original lesion was on his LEFT mastoid (opposite side of his head). We waited a few days to see if the pain would go away. It didn't. So we took a trip to see Dr. McClain, who saw it suspicious enough to warrant a head CT, now scheduled for next week. As you can imagine, we are all concerned and pray for a clean report.

It's hard to explain to a family that hasn't faced an orphan disease with no known cause. A simple thing like immunizations can worry you sick. Immunizations can't be done while your child is on chemotherapy, nor for 6 months after chemo is stopped. Logan missed his final immunizations while on chemo, so he's just at that stage to be 'caught up' for school. Couple this with the coincidence (??) that Logan was diagnosed with LCH just 4 months after his last batch of immunizations, and that his chicken pox vaccine didn't 'take' when he had it, as well as the loose link of immunizations and LCH's cousin HLH, and all of a sudden, you get a stress builder for parents who worry about their children. Yesterday we took Logan in for 5 immunizations. He sat on my lap like a trooper and never even said "Ouch." I think it hurt Mom more then Logan. In the end a Blizzard from Dairy Queen made things much better.

Make a Wish is in full swing in an attempt to schedule Logan for this summer. Logan's wish is to go to Jedi Training at Walt Disney World, and to check out the Lego Store as a side trip. We look forward to celebrating this time with him. The Make a Wish people have been very nice.

I've posted the latest video, "Bone LCH," on YouTube for the Histiocytosis community. Dr. Weitzman presented this three part video at the National Conference on Histiocytic Disorders this past August, sponsored by the Histiocytosis Association of America. It is a great learning resource for families and physicians alike. I've also added Dr. Nanduri's presentation, "Endocrine Problems in LCH."

Our special thanks go out to our local Cub Scout Pack 424 in Katy, TX. Our oldest son, Erik, is a Tiger Scout in this pack. Members of the pack have read about Logan's story via this website. To our surprise, they all stepped up and donated $1,000 to the HAA for research to fight this wicked disease. It's hard to put into words, but there is NOTHING in this world that means more to a parent of a sick child then when family, friends, and even complete strangers reach out and try to help your child. We were speechless. From the bottom of our hearts, THANK YOU to all in Pack 424!

Wednesday, 1/30/08

Logan and Erik are both fighting a cold, but they are doing well otherwise.

The rheumatoidologist saw nothing she could explain regarding Logan's fingers and thumbs. So we are no-where with that issue. Logan's neuro-psych report came back fine, so that's good news. All in all, after everything he's been through, we were told he's a very bright little boy ready for Kindergarten. Donna and I knew that already!

Logan's big brother Erik is in Cub Scouts, and this was his first year to race in the Pinewood Derby. The boys and I made two identical cars, and each boy picked favorite colors and decorations. Spiderman and New Goblin are the latest hits with the boys, so that's what went on the cars. Erik raced in the "Tiger" division, and came in 5th out of 23 cars. He did very well. Logan, since he's not old enough to be a scout yet, had to race in the "Open" division with other siblings (young and old), Mom's, and Dad's. Logan came in first out of 17 cars. If he would have been able to race for a trophy against the scouts, he would have won first place in the entire pack! He was very excited; but a little disappointed when they just handed him a ribbon instead of a trophy like the scouts received. Dad and the boys had a lot of fun, and are looking forward to next year's race!

Tuesday, 1/22/08

Sorry for the long delay. Logan has been doing well, though it sounds like he's coming down with a cold or flu.

Saturday, 12/22/07

Our hats off to Miranda Crohan in Orlando. A former LCH patient, she was treated from 18 months old until she was 7. Now, at the tender age of 10, she raised her own money so she could play Santa and pass out toys to the other children at the Children's Hospital.

Thursday, 12/6/07

The Histiocytosis Association has released the second of many videos from the National Conference on Histiocytic Disorders, presented in August of 2007 in Orlando. This new video, An Overview of Histiocytic Disorders, is a four part series (about 40 minutes total) presented by Dr. R. Maarten Egeler from Leiden University Medical Center in The Netherlands. Links to these videos and more are here under YouTube videos on Histiocytosis.

Logan's blood tests and MRI came back great. The blood test looks essentially normal. His MRI shows continued healing. Logan had an Auditory Brainstem Response (ABR) "hearing test," which shows the brain's response to sound. This test shows how the brain processes sound information, and a theory is that an abnormal ABR *may* be an early warning of Central Nervous System disease. However, Dr. McClain said the theory is so new and untested that many questions still remain. He's doing some more research to understand the implications.  The results of the test show that Logan's left ear (where he had his lesion) does show a poorer response then the right ear. CNS issues? Damage from the tumor being there and moving things around? Quirk of nature? Like many things in histiocytosis, we have far more questions then answers.

Logan still complains of pain in his index fingers and thumbs, on his nose, and in his mouth. This has been going on for probably over a year. His nose may be allergies (Texas is a strange place). Mouth, maybe teeth coming in...we saw the dentist and he didn't see anything suspicious. The fingers and thumbs, however, are a curious condition. Dr. McClain is checking into those. We may be going to a rheumatoidologist to investigate some more.

Wednesday, 11/28/07

It was Dad's turn to get sick. Everyone else had it in the house, I thought I might get away untouched. Oh No! We share in our family.

Logan did have his MRI on Monday. They weren't very concerned about his vomiting, since he seemed to have recovered quickly. Logan was trying to be brave, but he was obviously scared to go in to get his poke. He came through with flying colors, and was back to wrestling with his brother by the afternoon.

The sale on cards ends today. Save some money and order today! Lot's of families have joined in raising awareness this holiday season. Thanks for all your help!

Sunday, 11/25/07

The Histiocytosis Association has released the first of many videos from the National Conference on Histiocytic Disorders, presented in August of 2007 in Orlando. This first video, LCH in Newborns, is a two part series (about 20 minutes total) presented by Dr. Sheila Weitzman from The Hospital for Sick Children in Toronto. Links to these videos and more are here under YouTube videos on Histiocytosis.

Logan has started the steps to get a complete neuropsychological baseline study. Many children with LCH in the skull (about 40% of all LCH patients) run the risk of late effects or neuropsychological damage. Having a baseline to compare for the future is key to identifying issues early. Last week he had a brain activity test, where he was sedated and given a 'hearing test' of sorts. Tomorrow he was supposed to get his latest MRI of the brain. However, he started vomiting Friday night, so it looks like the MRI will be postponed. He's feeling better today. Logan is due for an office-visit with Dr. McClain in a couple weeks, where we will get results of the tests to date.

Last week we traded our beloved RoadTrek for a mini-van, which is more practical for our current uses. If you don't know what a RoadTrek is, imagine an entire motorhome shrunk to the size of a full-size van. It has everything: a kitchen, toilet, shower, frig, generator, TV, VCR, beds to sleep all 4 of us... Donna called it her Barbie House on Wheels. We spent 10 weeks traveling Alaska and the west coast with it just after Logan was born. No vehicle holds as much personality, nor has been as much fun. We will miss her, but she has a new home with a wonderful family. If they have even half the fun we had, they'll love that van forever!

The Holiday Cards have been selling fast! Thanks for supporting Histiocytosis Research and raising awareness. Remember to order cards before the November 28 discount deadline!

Thursday, 11/15/07

This year's Holiday Cards are ready! You can check them out on the Holiday Cards page. Thanks to all of you for participating and submitting photos of your beautiful children!

There is a discount available until November 28 for orders over 50 cards. Order soon!

Also, as a reminder, if you are outside the U.S. and want to order cards, send me an email and let me know which cards you want, how many you want, and the address where you want them shipped. I can calculate shipping costs and exchange rates and give you a quote before you decide to order.

Thanks to everyone for raising awareness!

Friday, 10/26/07

I can't believe it's that time of year again, but the holidays are sneaking up fast! Some of you are planning ahead better then me, and have started asking if we will be doing Holiday Cards again this year. After the fantastic response last year, I can't pass up the chance to raise awareness! You bet we're doing it again!

For those of you that are new, last year we did a photo collage of Histio Kids on the cover of Christmas and Holiday Cards. Inside was a brief message describing histiocytosis. The goals were to raise awareness for histio at this important time of the year, and to raise funds for histio research. All profits from the sale of the cards go to Dr. McClain's histiocytosis research and the HAA.

You can see a sample of last year's cards here.

Now, how can you participate? You can do any or all of the following:
1) Send a photo to be included on the cards
2) Tell other histio families so they can participate
3) Order the cards and send them to everyone you know
4) Tell everyone you know to use the cards

If you would like a photo of your "Histio Hero" (thanks for the term, Jeff and Melissa!) to be included on the card, please email me a quality digital photo. If you don't have a digital photo, you can mail a print photo to me. If you want that photo returned, please include a self-addressed, stamped envelope.

IN ADDITION TO ALL PHOTOS, please include a signed copy of the "Photo Release Form," which you can get here.

For my fax number or postal address, please send me an email and request them. I don't exactly want to post them here for the world to see.

One final thing... I'm no graphic designer. If anyone would like to design the photo layout of this year's cards, or knows someone willing to donate their time to do so, please let me know. It would be a Great Help for me!

When the cards are available, I'll post a notice here. Thanks again for participating and raising awareness!

Friday, 10/19/07

We've been busy! Erik's back to school (and now with homework!), he's also started Cub Scouts, and both boys are in soccer. Add that to the simple fact of two young boys around the house and it's run, run, run. Speaking of running, you should see Logan play soccer! This is the first season he's old enough to play. He's been watching Erik for 3 seasons, and Logan doesn't like to be left out of anything that his big brother does. So once he got a chance to get out on the field...ZOOM! Donna and I still look at each other and smile every time we see him play! What a big change from 2.5 years ago!

Dad has been busy, too. I've been editing all the video footage from the National Conference on Histiocytic Disorders. I still have months of editing left, but the first couple videos are done and waiting for a couple hurdles before being released to everyone. Watch this space for further updates!

Histiocytosis continues to show up in the press. You can follow the links and read the articles here.

Tuesday, 9/11/07

Logan's check-up with Dr. McClain went well last week, and blood tests so far have all come back acceptable. Logan has had some complaints about pain (fingers, mouth, nose, right shin), so we were anxious to get Dr. McClain's opinion on those items. Dr. McClain took note of the complaints, but was a bit mystified, since most are not normal sites for LCH. He stated that one other patient had complained of pain in extremities, and suggested Vitamin E. After physical exam and a review from the last CT scan, he felt Logan's nose issues were from allergies, and recommended over the counter allergy medicine. The shin is a more likely spot for an LCH recurrence, but Logan shows no other symptoms (such as limping, unable to support weight, etc.) so that site is a "watch and see." The mouth issue took us back down to Dr. Carter (dentist), who had checked Logan about six months ago. He did a physical exam and said he was so confident this was not LCH that he saw no reason to do an additional Xray to follow-up. Nice having a dentist familiar with LCH right in the same building! He admitted that he didn't have a firm explanation for the pain, but suggested it was likely teething. So, we will continue to watch these spots, and try the Vitamin E and allergy medicine. Other then these issues, and a bit of a cold, Logan is doing well.

We all enjoyed Jayne and Phil's visit over the long weekend. Though a bit rainy, we did enjoy the pools, cards, movies, and fishing. Each of the boys caught fish, and Erik even caught two turtles! We figured the turtles must be really hungry to be chasing our hooks!

Now, you probably missed it because you don't have Star Wars nuts living in your house. However, August 28th was a big day in Houston. George Lucas, in his attempt to squeeze a few more hundred million dollars out of the Star Wars franchise, came up with another publicity stunt ... err... EVENT. For those of you who know the movie, they transferred Luke Skywalker's original lightsaber from Lucas Films to Space Center Houston. It will be sent into space aboard the next space shuttle in Oct. or so. Then it will be returned to Earth and Lucas can have another EVENT and make millions more. Anyway, along with the movie prop came a whole collection of characters dressed in costume...Darth Vader, Boba Fett, Royal Guards, Storm Troopers, Clone Troopers. The big hit for the boys were radio control droids (including R2D2) that were the same size as they were! Photos of the boys at the event are here.

The boys were thrilled, though Logan was a bit timid at times. Both boys picked from their selection of costumes and decided to go dressed as Jedi complete with lightsabers. A few hapless airport travelers were nearly maimed as Erik twirled and showcased his lightsaber skills, but no permanent damage was done. As we were walking back to the car after the event, Logan's biggest concern was, "Dad, why didn't you ask those actors where they got their costumes?"

Thursday, 8/23/07

Just back from traveling again...this time to northern Michigan to visit Donna's Mom. Mom's holding her own, though she's on oxygen full time, now. The boys watched movies with Grandma, and enjoyed the chance to just hug her.

We also got to visit Don's two sisters and families, who live in the same area. We actually stayed at Aunt Sandy's house, and Aunt Carol fed us so well that we all gained 10 pounds in 5 days! The boys got a chance to play with their cousins again. Dad even took the boys out on the golf-course with Uncle Gino, Haley and Kyle. I think that was the longest 9 holes I've ever played. Dad will have to focus on some golf instruction and practice for the boys before vacation next year. We sure had fun, though!

Erik starts first grade next week. Aunt Jayne is coming to visit us for the long weekend. Logan is doing well health-wise, though he complains about constant pain in his two index fingers. Logan's check-up appointment with Dr. McClain is next week, so we'll ask him about the pain. Thanks for checking in on us!

Sunday, 8/12/07

Hot Hot HOT summer in Houston, but we are all doing well. We went to the Johnson Family Reunion, this year in the Smoky Mountains. The boys were able to visit with their cousins, aunts and uncles that they only get to see once a year. They also went indoor sky-diving with Dad and the cousins! That was great fun. The look on their faces was priceless!

Don went to the National Conference on Histiocytic Disorders in Orlando right after the reunion. It was great to see all the families that I've only met online. Also informative to meet the doctors and hear the latest info. My main purpose for going was to video-tape the presentations. It will take *months* for me to edit the footage, but you will be seeing many more hours of online histio information. If you are as excited about this as I am, send a message of "Thanks!" to Jeff Toughill at the Histiocytosis Association of America. This is your HAA at work for you.

Logan was interviewed last week by Make-A-Wish. What a great organization! He wished for (surprise!) a trip to Walt Disney World so he could attend Jedi Training School. They have Star Wars Weekends in June of each year, and Logan has always wanted to attend. As we were leaving the Make-A-Wish office in Houston, Logan asked, "Where are we going?" "Home to have some lunch," I responded. "But Dad, I thought we were going to Jedi Training NOW!" came the response from the back seat. It's going to be a challenging 10 months until June 2008! I hope they're able to make his dream come true!

Sunday, 7/8/07

Everyone is doing well. Logan has more energy then while on treatment, and is even (ever so slightly) more adventurous in trying new foods. Perhaps the chemo made everything taste bad, or maybe he was just a three year old!

No one has been more excited about summer vacation then Donna. She's thrilled to have both her boys home so she can take them swimming and down the water slides! Last week they went to all 5 pools in the neighborhood in one day!

To catch you up a bit over the last couple of months, we had a nice visit from Aunt Jayne and Uncle Phil over the Memorial Day holiday. The boys were very excited to have them here, and were glad to show them the Schlitterbahn Waterpark and the Lone Star Flight Museum (warbird airplanes!) on Galveston Island.

After we dropped our visitors off at the airport, we packed up the van and went (in a round about way) to Big Bend National Park. The boys were tired of riding across the desert, and were excited to finally arrive at "Pig Pen National Park" (Logan's name, said with a giggle). It was dusk as we arrived, and the Ranger Station was closed, but there was one native at the gate to meet me when I climbed out. I reached in the van and grabbed the boys, telling everyone "Look who's here to greet us. Come and see." Donna and the boys kept asking, "What is it? Who's here?" As the boys were standing just outside the van in their socks, and Donna was still sitting safely in the van, I pointed to our host...a Tarantula a little bigger then my hand.

They heard Donna's scream in Mexico City. Hearing Mom scream then made the boys scream. I stood on the sidewalk next to my new friend with three wide-eyed screaming maniacs. The Tarantula headed for the bushes. I was finally able to calm everyone down and convince Donna the spider wasn't poisonous, and it would not jump on the boys and suck their brains out. Before long, the three of them were following the spider everywhere. I couldn't get them back in the van, they were so fascinated. As Donna finally climbed back in the van, she said "They're actually kind of cute. Maybe we could get one for the boys as a pet." It was a highlight of the trip for the boys. I love the wild!

On our trip we also went to Davis Mountains State Park, the McDonald Observatory, the National Museum of the Pacific War, and Mexico. Erik, our little traveler, has always wanted to go to Mexico since he saw it on the map, so we took the boys across the border at Del Rio, TX. Erik was a little disappointed that they didn't have Mexican flags on every building.

The last three weeks for me have been spent editing a video series that is now posted on YouTube. Dr. Ken McClain and I recorded his "Histio 101, Introduction to LCH" presentation, along with a short description of his lab's research on Langerhans Cell Histiocytosis. In total, it's about an hour long, but it's broken into seven segments on YouTube. You can access all 7 videos here.

And you thought we weren't doing anything...

Our thoughts and prayers to the family of Nathan Cosby. I was about the same age as Nathan (15 and 16) when I was diagnosed and treated for cancer. Nathan lost his battle yesterday. www.caringbridge.org/visit/nathancosby

Monday, 6/11/07

Not forgotten...just been running! Everyone is healthy and happy right now. Logan goes in for blood tests and a checkup on Wednesday. Will update the site after that.

Histiocytosis continues to be in the news. Read the latest articles at Histiocytosis in the Press.

Our friends in Minneapolis are having a rough time. Histio Warrior Nicholas Johnson has a case of LCH similar to Logan. However, his latest scan shows his LCH is getting worse, not better. His chemo has been increased, and the side effects are really rough on the little guy. You can read more about Nick here. His family could sure use some words of support.

Thursday, 5/10/07

Everyone is doing well. Erik has only 10 days of school left. Logan is looking forward to having his buddy home to play with him during the day. It's May in Houston, which means it's getting hot outside. Good news for the boys, since that means they get to use the pool again! They've been swimming almost everyday this week (sometimes multiple times)! I think I noticed gills on each of the boys when I was putting their PJ's on tonight!

Our hats off to the Cahill's, a histio family in Florida. Seven year old Matthew has been fighting Langerhans Cell Histiocytosis for a while. His family was featured on Fox News. To read the story and watch the video, go to our Histiocytosis Links page and click on the story titled "A Real Life Episode of 'House' in Jacksonville." Thanks for raising awareness for histiocytosis!

It breaks my heart to report that another histio child has passed away. Levi Williams of Adrian, Michigan, earned his angel wings May 4th. This brave young boy, only 11 months old, lost his battle with Hemophagocytic Lymphohistiocytosis (HLH). You can send your support to his family here.

I look forward to the time when I don't report the loss of innocent children to this wicked disease.

Monday, 4/30/07

The histio parents in the Birmingham area have done it again. Jennifer Cummings (Maggie Kate's mom) submitted this excellent, well written article to The Birmingham News.

Logan is doing well. His energy level continues to climb (!) every day. I'm reminded of the days when I was treated for cancer with radiation as a teenager. Making it through a day at school was an accomplishment during those days. I was happy to come home and take a nap while undergoing treatment, and that only lasted for a month or so. Imagine two years on chemo! Logan is bouncing back like a super-ball, though. I can only imagine his energy level in another 6 months! I never thought I would be so happy just to see our son *run* !

Take joy in the simple pleasures of life...

Sunday, 4/29/07

Levi Williams is a little boy from Adrian, MI who received a bone marrow transplant in the hopes of beating HLH. He is really struggling right now. His family could use your words of encouragement, your thoughts and your prayers. You can visit his site here. It is a "CarePage" website. If you don't have a CarePage ID, you will need to register first (it's free).

Thursday, 4/26/07

Many of you histio families know Donna Newton. She wins the "Awareness Award" this week with her success in getting histiocytosis in the newspapers and on the nightly news in Birmingham, AL. Awareness is absolutely critical in beating histiocytosis. So that the rest of us can learn from her success,  I asked her how she got in the news. Here's what she had to say.

I emailed two anchor reporters and the health reporter from the station with a pretty lengthy and heart-wrenching plea. Devon (one of the reporters) picked up on it and called me wanting to run the story.

I also contacted The Birmingham News and they are running a commentary piece on Sunday along with a copy of the flier (for The Big Screening event in Birmingham). The commentary piece was written by Jennifer Cummings (Maggie Kate's mom) and is wonderful. We are also having a story run in at least 2 other smaller local papers. It took some serious persistence and determination -- along with calling on everyone I knew that knew someone. It worked and I am grateful. I hope it is the start of finding the answer.

Tell your story, and send it to your local newspapers, TV and radio stations. Copy the news editors as well as the health desk or human interest editors. Include your contact information (phone, email) so they can follow up with you. Fax it, email it, use postal mail...just get attention and get the word out. If it doesn't work this month, try again in a month or two. Maybe they have a lot of stories for this month, but then they'll be short stories next month. If you've got a ready made story, you really helped them out, and you've helped histio, too!

Great Work, Donna!

Wednesday, 4/25/07

Here is the happiest boy on the planet!

Since Logan had his port removed yesterday, it has been his favorite toy. He carries it everywhere with him, and will even sleep with it at night. He's excited to show it to all his friends, and even complete strangers.

The photo to the left shows Logan modeling the (now removed) port on the right hand side of his chest. The bandage on his left is where the port used to be.

The photo on the right is a close-up of the port, with a quarter for reference. A port is 'installed' by making an incision on the chest. The port is slid under the skin, and the holes around the edge of the device (see photo) are sutured to the wall of the chest so it doesn't move. The long tail on the lower right side of the device has tubing that is inserted into a major vein that goes into the heart. The 'eye' in the middle of the port is where a nurse would access it by using a needle through the skin. Chemotherapy is given through this port, and blood drawn as well, all without 'fishing' for a vein in his arm.

I thought about Logan getting a cut next to his eye and bumping his head on the bed last night. It reminded me of parents and histiocytosis. I warned the boys yesterday about Logan being 'tippy,' and that we should be extra careful. Donna and I ran around constantly reminding them "No wrestling! No jumping! No climbing!" We held Logan's hand in the parking lot and while walking around the stores. We repeatedly picked up toys on the stairs and floor so Logan wouldn't trip. We were always around him, trying to protect him. And you know what? Both times he got hurt he was within arms reach. We try so hard to protect our children, and yet something sneaks in and our children suffer. Remind you of histio?

Tuesday, 4/24/07

Logan had his port removed today! He was so excited last night he could barely sleep. When we woke him up at 6:20 this morning, he jumped out of bed and danced. He was a trooper through the procedure, and came home with his biggest trophy of all: the actual port that's been in his chest for the past two years. I'd take a picture of it to show you, but I can't pry it away from him. He's carried it in a jar all day, and now he's sleeping with it!

He slept for 3 hours or so this afternoon, and got up to show his brother when Erik came home from school. Then we went out to celebrate with a trip to the toy store, and then another, and then a third before he found exactly what he wanted...plus dinner out. He was living large tonight! It's great to indulge him (and Erik, too). He's certainly earned it.

The downside was that he has been a "little drunk" all day. He was given his "Tippy Medicine" this morning for the procedure...the general anesthetic. As most histio parents know, this makes your child "tipsy" or "tippy" for the rest of the day. It's like you have a 4 year old drunk running through your house, store, car, whatever. They are the bravest creatures on Earth one minute, and so tired they ask you to carry them the next. Our poor little drunk banged his head on the bunk bed at home, and then caught the corner of his eye on a chair at the restaurant. So, he's got a scrape next to his eye and stitches in his chest, but I think he'll wake up the happiest boy in the world tomorrow morning after a good night's rest...and he'll still be clutching that "port in a bottle."

Friday, 4/20/07

As a follow-up to an earlier story, eleven-year-old Taylor Kirkpatrick is suffering a recurrence of LCH in his central nervous system that has confined him to a wheel chair. His family has been nominated for ABC's "Extreme Home Makeover" so that Taylor may navigate their home more easily with his wheel chair. The family is in the process of making their submission video this week, and is requesting letters of support to include with their video submission. You can read the story here and send an email of support to them at taytaylch@hotmail.com

Mary Zander is three year old struggling to stay alive while battling histiocytosis. She is just now being transported to CHOPS in Philadelphia for a lung transplant. Please add Mary and her family to your prayers. You can visit her site here. It is a "CarePage" website. If you don't have a CarePage ID, you will need to register first (it's free).

Thursday, 4/19/07

Donna found some very interesting information about maintenance chemotherapy and reducing the risk of recurrence (a major concern for all histiocytosis patients). While these studies were done for acute lymphoblastic leukemia, it's not a huge leap to say they would also apply to histiocytosis. Both mercaptopurine (6MP) and methotrexate (MTX) are commonly used for maintenance therapy for LCH.

Here is what was cited on Postgraduate Medicine Online about chronotherapy (study of bio rhythms and their mechanisms):

Cancer
Acute lymphoblastic leukemia is one of the first diseases studied that showed improved clinical outcomes with chronotherapy. Disease-free survival rates were compared in a study of 118 children who received maintenance chemotherapy (ie, mercaptopurine and methotrexate) between 1976 and 1984 (17). The study found that the risk of relapse was 2.56 times higher in children who received chemotherapy in the morning than in those receiving the same treatment in the evening. Similar results were seen in a subsequent clinical trial (18). The underlying mechanism for the improved outcomes with evening dosing is thought to be pharmacodynamic (19).

References:

17. Rivard GE, Infante-Rivard C, Dresse MF, et al. Circadian time-dependent response of childhood lymphoblastic leukemia to chemotherapy: a long-term follow-up study of survival. Chronobiol Int 1993;10(3):201-4

18. Schmiegelow K, Glomstein A, Kristinsson J, et al, for the Nordic Society for Pediatric Hematology and Oncology (NOPHO). Impact of morning versus evening schedule for oral methotrexate and 6-mercaptopurine on relapse risk for children with acute lymphoblastic leukemia. J Pediatr Hematol Oncol 1997;19(2):102-9

19. Koren G, Langevin AM, Olivieri N, et al. Diurnal variation in the pharmacokinetics and myelotoxicity of mercaptopurine in children with acute lymphocytic leukemia. Am J Dis Child 1990;144(10):1135-7
 

Logan was on mercaptopurine (6MP) for maintenance therapy. The only direction we recall receiving regarding this drug was to take it on an empty stomach. In light of this research, it would seem wise to have a label on all 6MP and MTX prescriptions which says "Take this at night on an empty stomach and do NOT give with milk products." Thankfully for us, it just happened that our drug schedule for Logan resulted in him getting 6MP just before bed for most of this past year.

For you parents facing maintenance therapy, you might want to take this info to your Hem/Onc and ask the questions.

Wednesday, 4/18/07

Great news! Logan has been given the green light to stop his maintenance chemo. The latest scan shows "all clear." Logan is very excited to get the port removed from his chest, which should happen very soon.

We're thrilled and relieved, and more then a bit apprehensive. With so many Histiocytosis families experiencing a recurrence this year, it truly scares the daylights out of us. Here's to hoping we made enough of the right decisions with our doc's. Now we'll watch and wait. Thanks everyone for your support!

A clarification: While we hope this is the last we ever see of histiocytosis for Logan (and any nasty long term or side effects from the disease or treatment), we will continue to be involved and fighting this wicked disease until there is a cure. Our true wish is that other histio families will also stay involved, even after they say "Good-bye" to treatment... or worse... "Good-bye" to their child or loved one. There is so much to be done, and the families are absolutely CRITICAL in solving this disease...for our children and all those that come after us. A cure WILL NOT happen without family involvement. We consider it a duty and an honor. Please join us!

Erik is fighting a strep throat and yet another upper respiratory infection. He's been on antibiotics since Sunday. Never a break for that boy! I think we better do some allergy testing on that poor kid!

Friday, 4/13/07

Friday the 13th...not exactly the date you'd pick for a brain scan if you were the superstitious type...but that's where Donna and Logan are this morning. If all goes well today, Logan will stop his chemo treatments, and will also be scheduled to have the port removed from his chest. This port is used to draw blood, give IV chemo, and give other drugs that he needs to protect his health. We expect to hear results on Wednesday the 18th. Here's hoping for good news...

Unfortunately, I have some unhappy news to report. Zachary Hunter lost his battle with LCH this past Wednesday. Zac was in a fight for his life at the age of only one month. He earned his wings at the age of three. He leaves behind a twin brother, older sister, and loving parents. An email or entry in his guestbook would be a big comfort for his family right now. It doesn't have to be anything long or fancy. Just something saying that Zac touched your life in some way. You can do that here, as well as read more about Zac.

Friday, 3/30/07

Logan is doing well. He had his normal monthly visit just 2 short days after our last ER visit. Blood work was as expected, and we are on schedule for scans next month, followed by another office visit. If all looks good, Logan will be able to stop chemo and have his port removed. Yahoo!

I'd love to say that we could then close the book and move on with life as usual. Those of you that have been reading this for any length of time know that just doesn't happen. Langerhans Cell Histiocytosis (LCH) has a bad habit of recurring...a 20% to 50% chance.

There are few things that strike fear in a parent as much as hearing their child has a recurrence of LCH, and it happens far too often. These last few months have seen an unusual number of recurrences. Please pray for these children: Austin, Christopher, Ivy, Lindsay, Maggie, Nick, Patrick, and I'm sure I'm missing some others. If you'd like to read their stories, you can find links to some of them on the Links page. Nick and his family are really struggling right now. We know from experience that just a few words of encouragement via their Guestbook or email go a LONG way.

Taylor Kirkpatrick is an 11 year old boy dealing with recurrence. Diagnosed at 13 months old, he battled LCH for 2.5 years. He was in remission until age eight, when the disease came back in his brain. He is now in a wheelchair most of the time, but the family home is not wheelchair accessible. He has been nominated for ABC's Extreme Makeover: Home Edition. You can read and see the story here. You can also write a letter in support of Taylor.

You will never find more high quality individuals then the families of children battling a life-threatening disease. Their heads are on straight, their priorities are in order, and they rise to any challenge. And yet they are so humble and only wish to help. I'm proud to have met so many, though I'm very sad to have met so many...if you know what I mean. I look forward to the day when we cure LCH, children never have to learn about it, and families don't have to be turned upside-down.

Monday, 3/19/07

"Gosh, we haven't been to the hospital for a few days, let's go again." Donna noticed Logan had a fever at 1:25p this afternoon, so we called the clinic. Standard procedure for a fever: if during business hours, call the clinic and go see them. If after hours, page the Hem/Onc fellow on call and they'll (likely) send you to the ER. "Finally," we thought, "a fever that actually comes during business hours. We'll be seen at clinic by people who actually know about histiocytosis, likely even know Logan, and be home within 4 hours." Oh, how silly and misguided we were.

"Cut-off for the clinic is 2 PM," we were told. "WHAT!?!?" Even the post office and bank are open until 4pm!

There was more discussion, and a lot of nasty thoughts running through my head. But I don't want to bore you with details; and I honestly don't have one nice thing to say. So, like my Mama told me, I best bite my tongue.

We packed up the entire family (Erik was home sick and INSISTED on being with his brother), and raced 25 miles through Houston rush hour traffic to arrive at 2:10pm. Surely they could be a little flexible. "Too late. Go to the ER." My tongue is really hurting now.

As I carried Logan to the ER, I knew we were doomed for a long wait. A weekend visit in the middle of the night with few patients takes a minimum of 6 hours.  Middle of the day? First business day after the weekend? There were families waiting EVERYWHERE...in the (huge) lobby, on the floor, in the ER waiting room, and in a second ER waiting room. There were 95 (no, that's not a typo) children in line before us! I can only begin to imagine the number and variety of germs flying around that area. We reminded them Logan was a Hem/Onc patient and still on chemo. A nurse directed us to another waiting room, "a little cleaner." We asked for masks for both boys.

Lots of waiting, a blood test, and some antibiotics, and we were out like lightning in 9 hours. Let me repeat that. A simple blood test. A dose of antibiotics. Nine (9) hours. Let's think about this. Draw blood: 5 minutes. Lab results: 40 minutes. IV Antibiotics: 1 hour. Goof off time: 45 minutes. That would still only equate to 2 and a half hours. As another parent recently pointed out regarding their ER visit...there was NO urgency. If this were ANY other business, the owner and employees (in this analogy: the ER, doctors, nurses, support staff) would be rushing around trying to please their customer (patient, family) so they don't leave. Instead, we're taught to shut up, wait an indeterminate amount of time, and pay whatever is charged. Oh, and be sure to say "Thank You!" In this broken system, I feel they would be happier if you DID go somewhere else.

The hospital has a new slogan: "Excellence to Eminence." Tonight I wanted to slap every staff member wearing that T-shirt. Just saying it doesn't make it so...

Friday, 3/16/07

Seven hours in the hospital, and Donna and Logan are back home. It appears both boys are fighting a stomach virus of some kind. They each threw-up within an hour of each other...Logan at the hospital and Erik at home. After lots of sleep, they each seem to be feeling better today.

Thursday, 3/15/07

Happy Birthday, Donna! She just asked for two things for her birthday...a healthy family and a winning Lotto ticket. Instead she got what I did for my birthday: a trip to the Emergency Room with Logan. He's been dragging all day and complaining of a tummy ache, aches and pains, and being tired. Tonight (after clinic closed, of course) his fever started, and just climbed over the 101 mark, which sends him to the hospital. Erik has been having the same complaints, so we assume it's not a central line infection, but we need to make sure. All of us have been fighting a wicked cold, and both boys are still on antibiotics.

Please watch over our boy. Have it be something simple and easy to fix. Find it fast and fix it.

Saturday, 3/3/07

Nightline showed this great story about two parents fighting for their son who is suffering from a rare disease.

Thursday, 3/1/07

March already! We're glad to see the sun and warmer temps, but amazed at how fast the time goes! We're doing relatively well. We're all fighting colds/flu. The boys are on antibiotics. I'm trying to hold out to see if my body can fight it off. Donna (immune system of steel) is just coming down with it. The rest of us have been fighting for 3 weeks. Otherwise, Logan is doing well.

Logan passed his monthly checkup with no major issues. His liver numbers are good, and he continues to grow in height and weight. All good news. He is scheduled for his next major scan (MRI) in mid-April.

Logan's big brother Erik lost his first tooth last week. He was so excited and was looking forward to a visit from the Tooth Fairy. He then misplaced his tooth and was quite distraught and refused to go to bed until we found it. We turned the house upside down to no avail. I'm sure you parents can understand. It's hard enough trying to find Jango Fett's Lego Blaster, let alone a tiny white baby tooth. We finally convinced him that it was so late that the Tooth Fairy had already stopped and picked up his tooth so she could get some sleep. All was forgotten when Erik woke up and found money under his pillow from the Tooth Fairy.

Thanks to all of you, we've had success in the battle against histiocytosis. Dr. McClain is doing research comparing LCH tissue against normal histiocytes. This research could identify the genes responsible for LCH, and be a huge step forward in finding better treatments and even a cure. This research requires a fresh tissue sample from a biopsy. The tissue would normally be thrown away after a diagnosis. If you or your child is having a biopsy soon, please contact me on how you can help. There is no cost and it could be a huge benefit! With all of your help, we've doubled the number of samples that Dr. McClain has received just in the last few weeks!

Monday, 2/19/07

We ask for your prayers for Ivy, a brave little girl who has been fighting LCH for the last two years, just like Logan. Ivy is struggling in the hospital now with what looks like another relapse of LCH. You can read more at Ivy's site.

Wednesday, 2/14/07

We talked to a few families that said the chemo treatment had removed the enamel from their children's teeth. Today we took Logan to see a specialist at Texas Children's. Dr. C stated that the chemo levels for histio didn't normally cause this problem. It is much more common for leukemia and bone marrow transplant patients. Then he checked Logan and gave him two thumbs up, no problems, (other then we should start saving for braces). Yahoo!

Logan looked at me today and said, "Dad, do I still have my port?"  "Yes," I replied. Puzzled, he asked, "But I'm 4 now! Why do I still have my port." We had told him last year that he needed to continue to receive medicine through his port, but we should be done next year. To give a reference point as to how long that would be, we told him, "When you're 4 years old." He took that as gospel and has since considered it a "done deal" ... turn 4, port magically comes out. I see we have some more explaining to do.

Sunday, 2/11/07

HAPPY BIRTHDAY, LOGAN! Four big years old today. I must admit, over these past two years there were times that I wondered if Logan was going to live to see this day. That's a sobering thought to have for your child, isn't it? Thankfully, he has responded well to treatment and we are in a much better place today then we were two years ago. These four years have certainly gone by fast. I still remember carrying him around the house like a football when he was a "tiny guy." No more...

Logan enjoyed presents (Star Wars toys, of course) and a trip to Chuck E. Cheese for games and his favorite: an ice cream "sam-O-wich."

Tuesday, 2/6/07

It's nice to have Donna back home. It was just "three boys" at home this past week as Donna went to visit her mother in Michigan. Grandma is battling a double-pneumonia and seems to be doing better now.

Logan passed his monthly check-up with flying colors...no major concerns. On the whole, we are all doing well. We're battling the typical colds and other minor ailments, but we don't sweat the small stuff.

Thursday, 1/18/07

No news is good news. We've all been healthy with no real complaints. Logan's next check-up is in a week.

Erik's school was cancelled yesterday because of ice. We're reminded of our "snow days" from growing up in Michigan. Erik and Logan were looking forward to seeing snow. Donna and I were NOT. Thankfully, no snow, and temps have finally started to warm up a bit. It's not Florida, but it's not Michigan, either!

Tuesday, 1/2/07

Happy New Year! Thanks to everyone who has sent us cards this holiday season. We especially enjoy the letters with updates from y'all. We don't get to talk to you enough. We really look forward to the news of the past year's events. Thank You!

Before I forget, if you or your child is having a biopsy of a 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 all of us.

Sadly, histiocytosis has claimed the life of another child this holiday season. Baby Cale earned his wings just before Christmas. Our hearts break for his family. His uncle has made a wonderful video to celebrate his life, which you can watch here.

While I'm at it, a video celebrating Andrew's life can be seen here.

And finally, to round out my videos, I'd like to share this story from Sports Illustrated with you. As the author writes, I try to be a good father...but I don't hold a candle to this guy. Take 7 minutes and read the article. Watch the video. Change your life.

Sunday, 12/31/06

It is with a heavy heart that I write Mitzy, our Wonder Dog, passed away today. She has been Donna's constant and loyal companion for the past 13 years. Aunt Jayne saved her from the pound especially for Donna, and there could not have been a better match ever made.

My first big introduction to Mitzy was when Donna and I had just started dating. It was the first dinner Donna had ever made me, and I just walked in the door as she had put the steaks in the center of the table. I had heard that Mitzy was a little spoiled, so I jokingly asked Donna if she had set a place at the table for Mitzy. "Oh no," she said, "Mitzy NEVER begs at the table." Just as those words were leaving her lips, I looked over her shoulder to see Mitzy stand on her hind legs, put both front paws on the table, reach across, pick the top steak off the table with her mouth, and promptly devour it. I've never seen a more horrified look on Donna's face in my entire life.

My favorite Mitzy story, however, includes a boat. We used to live on a lake in northern Michigan. Mitzy loved to bark at and chase the ducks. The ducks would tease her into the water and then swim just out of her reach...up and down the lake. Mitzy would swim after them until she was so tired she'd have to turn around and swim back to shore. One day I came home from work to find Donna soaking wet and gasping for breath. "You went after Mitzy?" I asked. "She chased the ducks into the center of the lake. All you could see were her head and ears. I thought a boat was going to run over her!" So Donna jumped off the dock, fully clothed, to swim out and rescue her dog. Our wonderful and retired neighbor watched this spectacle from his pontoon boat and decided he better save both dog and owner. I still wish I could have watched him pull Donna and then Mitzy out of the water and onto a pontoon boat!

So long Mitzy. You were the best friend anyone could ever ask for.

Monday, 12/25/06

Merry Christmas! We just came back from Florida and a visit to Aunt Jayne and Uncle Phil's house. Wise Old Santa found the boys in Florida as well as in Texas, so they got multiple "Christmases" and mountains of presents, including from their Michigan relatives before we even left for Florida. Logan keeps asking me, "What day is the next Christmas, Dad? How come there are no more presents?"

The boys got to enjoy our Florida favorites, like shorts & T-shirts, swimming in the pool, and eating outside on the patio. Aunt Jayne even took us to the Dolphin Research Center in the Florida Keys, and Donna and the boys got in the water with dolphins! Donna swam with the dolphins at this same location when she was a teenager, so she was as excited as the boys (probably more!) to get in the water. Photo's here.

The boys are healthy and happy. It's a Great Christmas!

Sunday, 12/10/06

Both boys are still battling colds and Erik was up all night with symptoms of an ear infection. Unfortunately that meant both boys missed the Christmas play at church that they've been practicing for over the past months. I was lucky enough to see them practice the whole play a number of times. I'm disappointed that they didn't get to participate in the Grand Spectacular...all the kids (and staff) just did a fantastic job!

Thursday, 12/7/06

Logan is feeling much better today. X-rays show that he might have a hint of pneumonia in one lung, so they gave him 5 days of antibiotics just to cover our bases.

Wednesday, 12/6/06

I'm a simple guy, and I have most everything I need, so I didn't really ask for anything for my birthday. One thing that certainly WASN'T on my list was a trip to the Emergency Room with Logan; but that's where we ended up for 8 hours starting at 2:30 am this morning. Any fever over 101 sends us to the ER, and we've been lucky that this was only the second fever in the past 2 years. This latest fever registered 104.7 (!) on our ear thermometer, and the Little Guy was feeling mighty crummy. Some blood tests, X-rays, an IV blast of antibiotics and we were out the door with news that it just looked like a virus. Erik has what looks like the same thing, he's just a few days more advanced then Logan. Erik had one night of fever, and then never again. We assume Logan has the same thing, but we follow-up with another trip to the hospital tomorrow.

Sunday, 12/3/06

Our prayers to the families of Elizabeth Hacker, Isaac Scalf and Ella Grace Dorcey. They have all lost their battles with histiocytosis in these past few weeks. I hate this disease and the heartbreak it brings to the children and their families. We will continue to fight this disease every day of our lives until it is cured.

Saturday, 12/2/06

Erik celebrated his sixth birthday surrounded by his friends and family today. Despite the cold (53 degrees = cold for Houston) the kids had a great time playing at the park. Erik's party was followed by our subdivision's winter party with man-made snow and Santa! The boys enjoyed snowball (ice-ball??) fights, cookies, and meeting Santa.

Wednesday, 11/29/06

Remember when 5 Histio families went to Squirrel Creek Ranch a couple months ago? Fox News was there to film part of it, and this brief story was broadcast Thanksgiving Day. Watch for all of us in the story!

Monday, 11/27/06

We've been cruising for the holiday, Thanks to Aunt Jayne and Uncle Phil. They treated us all to an "All Gone Party" on the Carnival Triumph cruise ship in the Caribbean. Yahoo! Will say more in a few days. Right now, we're paying the price for being gone for a week!

Wednesday, 11/8/06

Our first big news: Holiday Cards. Thanks to the wonderful assistance of many histio families, we have 20 children pictured on the Histio Holiday Cards. By sending these for your annual Christmas/Holiday cards, you will be raising awareness and research funds for histiocytosis. Check them out here.

Halloween was a big success. The kids had a blast and collected so much candy that they couldn't even carry it all home! Best of all, after four streets of Trick or Treating, the boys said, "We're really tired. Can we just go home and go to bed?" Yahoo!

Logan is still fighting mouth sores, though they are much improved. We believe this is due to the 6MP (chemo) he's taking. The sores are no longer on his lips, and are mostly gone from the inside of his cheeks. We just started him on a reduced level of 6MP again. Other then that, Logan seems to be doing well. Erik sounds like he is coming down with a cold.

The Histiocytosis Association of America held a Regional Meeting in Houston this past weekend. We went to a screening of the Big Fix movie Friday night, and then had an educational presentation on Saturday. We always learn something new about this wicked disease.

As always, thanks so much for checking on Logan!

Monday, 10/30/06

Another day for blood tests, an office visit, and Pentamidine to reduce the risk of pneumonia. This is routine each month. When I asked Logan my daily question of "Do you have any hurts?" he pointed to his lips. The inside of the upper and lower lips were covered in sores. Dr. McClain said they looked like a typical side effect of 6mp, the maintenance chemo Logan's on. His liver numbers have also started creeping up again. He's been on a higher dose of chemo these last few weeks, so it sounds like we're on the fine line of "too much" and "just right." For now, we've stopped all chemo for a week in the hopes the sores heal, then we will start back with a lower dose. Never a dull moment...

The boys are looking forward to Halloween and Trick or Treating tomorrow. If you follow our children at all, I'm sure you've guessed that they will be clad in Star Wars costumes.

I'm in the process of creating a Holiday Greeting Card to raise awareness and funds for histiocytosis. It will feature the faces of children battling histiocytosis. It should be ready to order in about a week! If you haven't ordered your holiday cards yet, I have a suggestion for you!

As always, thanks so much for checking on Logan!

Monday, 10/23/06

The boys have been busy lately, which means all of us have been running! We enjoyed Aunt Jayne's visit over Columbus Day weekend. Donna and Jayne took the boys to the Johnson Space Center and then down to Galveston and the Schlitterbahn waterpark for the long holiday. The boys had the ladies running up stairs and sliding down water slides for 7 hours straight. I think it did more damage to the ladies then the boys! Aunt Jayne said her legs would never be the same.

I had dinner with an old college buddy who was in town for work. His son is also fighting a serious childhood blood disease, and he has been treated with chemo similar to Logan. It was interesting and frustrating to compare notes as fathers...regarding caring for a child with a life-threatening disease, putting chemo into your child, the medical system as a whole, and the painful realization that we, as parents, can't protect our children as well as we would like.

We were then treated to a weekend at Squirrel Creek Ranch, compliments of the Faust family. The Faust's have a ranch near San Antonio, and a few times a year they bring families being treated at Texas Children's Hospital out for a weekend of fun. We were one of six families invited this time, most of us fighting Histiocytosis.

Logan and Erik (Mom & Dad, too) had a fabulous time riding horses, seeing a ranch full of exotic animals, swimming, and playing with new friends. They had crafts, games, movies, and more food then we could eat. Logan won the award for "most fish caught (4)" and Erik won for "largest fish caught (it was a monster)." Pretty good for first time fishing...and the limited attention span of a 3 and 5 year old!

This was the 25th time the Faust's have sponsored a weekend for families, and they made a lifetime of memories for us and our children. "Thank You" just doesn't cover it. Hopefully some of the smiles of our boys in the photos from the ranch can express it better then words. Check them out here and on the Photo page.

Logan has been doing well on Maintenance. We're still watching his liver functions very closely, and will be testing his blood levels again in a week. Last week as he was about to get his blood test, he looked into my eyes and said, "Dad, I think I'm going to cry when I get my poke." He was very brave and made it through without any tears. He's my hero. Every single day, he's my hero.

Thursday, 10/4/06

Happy Birthday to The Smooch Monster (Aunt Jayne). The boys are really looking forward to your visit this weekend!

Wednesday, 9/27/06

Great work with all  your positive thoughts. We had excellent news at the hospital today.  As a summary in very simple terms: Logan's tumor is essentially gone. The hole in his skull is healing very well. Next scans will be in 6 months. If you'd like more details, you can continue to read below.

As a brief reminder, Logan's skull lesion was in the temporal area, between his left ear and left eye. It had eaten a hole in his skull. Monday's MRI & CT show the temporal (skull) bone is healing well. Activity (tumor) in the left mastoid (skull) is essentially gone...thought to be only scar tissue that continues to decrease. The scans showed no other lesions, and there was no abnormal activity in the brain.

Logan has had a cyst in his Pineal gland (which is in the center of the brain) since he was first diagnosed. The significance of this is unknown, but studies have shown that children with LCH are more likely to have a Pineal cyst. Monday's scans show that Logan's cyst is approximately 20% smaller. Again, the significance is unknown. Personally, I like to hear anything that was 'out of the ordinary' is now going back to 'more ordinary.'

Logan's next scans will be 6 months from now. If those come back clear, Logan will end his chemotherapy. All excellent news.

The only bad news we received was that Logan's maintenance chemotherapy (6MP) is too much for his liver. We had this problem before, so we will ease back on the dose a bit.

We celebrated our "Germs are ALL GONE" news with one of Logan's favorites: chocolate cake and ice cream. The boys were licking chocolate frosting out of the bowl and off the cake before Donna could even cut the cake. Our friends David and Gail are visiting from Wisconsin, and they enjoyed the celebration with the boys!

Some news articles have appeared recently regarding histiocytosis. You can read the full text by following these links.

Sunday, 9/24/06

Well, it's nice to be back and relatively healthy. You've heard of the E. coli in spinach reports? We believe that's what knocked me out for the last 2.5 weeks. It's been a long time since I've been so sick. I'm happy just to get out of bed. In light of this experience, before I eat any vegetable, I ask it if it's going to try to kill me.

The boys are doing well. They are both still on antibiotics...they have coughs that persist, though much improved. Donna is finishing the decorating transformation of Logan's room. It has morphed from a pink "girly" room to a blue "Star Wars - Buzz Lightyear - Lumpy and Roo" bonanza. It looks great and Logan is thrilled. Erik complains that "Mom will never decorate my room."

Logan goes in for his latest scans early tomorrow morning. We ask for your prayers and good wishes for clean and positive results. We will receive the full report on Wednesday.

As always, thanks for checking on Logan.

Thursday, 9/7/06

While we were in Cleveland for "The Big Meeting" (a medical conference on Histiocytosis), a wonderful non-profit came and took photos of the children and families. The group is called "Flashes of Hope," and was created by a mother who's child was battling cancer. They take photos of children battling life-threatening diseases free of charge for the families. Our photos just arrived, and we're thrilled with them! I've put a few in the Photo Gallery if you'd like to check them out. THANK YOU Flashes of Hope!

Both boys are on antibiotics, and the results have been dramatic. Erik's constant cough nearly ceased the first night. Both boys are feeling much better. If we could only cure LCH so easily...

Tuesday, 9/5/06

We've been busy lately...sorry for the delay. Erik's time in school has us adjusting to lots of new things. One big thing we've learned about: Sharing...as in GERMS! Within a few days of starting school, Erik started coming home with the sniffles, which grew to a wicked cough. He shared his cold with Logan. Both boys have been fighting colds for over 2 weeks, so they have appointments with the pediatrician this afternoon.

Other then the cold, Logan has been doing well. His latest check-up showed his blood tests in the near-normal range, so his chemo dosage has been increased. As a reminder, Logan is on Maintenance therapy until April 2007. He takes oral chemo at home. When he first started Maintenance in April 2006, the chemo was too hard on his liver. We briefly switched to a new drug, and then back to a lower dose of 6MP, his current chemo drug. Now that his liver tests have leveled out, we're trying to raise the chemo dose back to the April 2006 levels. What dose is required for 6MP to be therapeutic (kill the bad cells)? What damage does it do to a 3 year old's body? Are we giving too much? Too little? No one knows the answers to these questions. I sure wish I did, because it tears my heart out every night I tell him, "Logan, medicine time." An innocent little face runs into the kitchen and looks up at me, trusting me completely. He then snatches the pill out of my hand, pops it in his mouth and swigs it down with his water. ZOOM! He's back off playing with his brother. I wish we knew what we were doing...

Aunt Jayne came to visit the boys the weekend before last. They had a great time and were thrilled to have "The Smooch Monster" smother them with attention and treats. Erik read (Yes, he can actually READ now!) books at bedtime, and Logan impressed Jayne with his swimming skills over the weekend. Both boys tried to teach Aunt Jayne how to play Star Wars games with limited success. Smooch Monsters aren't as excited as little boys when it comes to video games.

This holiday weekend was the last weekend for the neighborhood pools to be open, so we took the boys to the "diving board" pool. They've wanted to go all summer long, but the diving board has been broken. It just got replaced last week. Logan was so excited to go, but was apprehensive about jumping off the diving board. Mom and Dad encouraged him, and he was brave enough to jump in with Dad holding him. That progressed to letting Dad drop him off the diving board into the pool, and before long, he was doing spins and stunts as he rushed down the board. We were sorry we didn't have the camcorder. It was certainly a magical transformation.

We're very excited about our next bit of news. A gift shop in Valdez, Alaska has become the first business to order Logan's Greeting Cards to resell in their shop. We now have tourists from all over the world raising awareness about Histiocytosis. We're thrilled to help spread the news.

Thursday, 8/17/06

Thanks to all of you, The Big Fix trailer video on YouTube went from 0 views one week ago to over 900 views today along with 4 great honors:

Thanks for your help in raising awareness about Histiocytosis! In case you don't know, The Big Fix was a cross-country bike ride this past summer to raise awareness and funds for Histiocytosis research. A videographer accompanied the riders and filmed the whole event. That DVD is due out next month!

If you haven't seen the trailer, please click on the link above. And if you have seen it, please see it again! Every time you view it, it moves up in the rankings. The higher in the rankings, the more awards it receives... the more other people see it.... and more people learn about Histiocytosis.

Logan continues to do well and has been enjoying his "Mommy and Me" time while Erik is at Kindergarten. We have actually been able to get the boys into bed (and asleep!) before 9 PM and then out the door by 8 AM for an entire week! This is a HUGE accomplishment in our view, and we've been feeling quite pleased with ourselves as well as amazed it's actually happened.

The summaries of the Break-Out Sessions from the Cleveland conference (The Big Meeting) are out for review right now. We have good input for all sessions except "Systemic/Multi-Focal Langerhans Cell Histiocytosis (LCH)." Thanks to all the parents who sent feedback.

Friday, 8/11/06

Erik had his first day of school yesterday, and he just loved it. We were all missing him for the day, especially Logan, but we were thrilled to hear about his exciting day. Logan is ready to get "Signed up" to go to school, too.

Logan is doing well. He continues chemotherapy every other day and tolerates it well. Once or twice a week he'll complain about nausea, which we treat with Zofran. His iron levels have been low, so he's been taking iron supplements for the past three months. His iron levels are back in the "normal" range now. We continue with blood draws every couple weeks. His next big event is a CT and MRI in late Sept.

Thanks to everyone for your continued support, prayers, emails and Guest Book entries. And thanks for ordering Logan's cards. You not only raise funds for Histiocytosis Research, but you also raise awareness about the Histiocytosis cause. THANK YOU!

Thursday, 8/3/06

No more fever! The boys have been enjoying their last days of summer before our lives change again...Erik starts Kindergarten in one week. Nearly six years have gone VERY fast. All of us are in for big changes with the start of school. By the way, who ever dreamed up starting school in early August??

We're trying to summarize The Big Meeting Break-Out sessions from our Cleveland trip. This will be useful for the families that weren't able to attend. We need help from the other families that attended breakout sessions we didn't. If you attended a breakout session after lunch in Cleveland, please send me an email with a short note about what you remember being discussed.

Thursday, 7/27/06

Three days and no more fever, so we're relieved. The boys are getting very antsy from being inside for the last four days (Mom and Dad, too!).

Monday, 7/24/06

We're back from a wonderful vacation week. This year the annual Johnson family reunion was in TN, just outside Great Smoky Mountains National Park. It was great to see my brothers and sisters and their families. Even better, Logan and Erik got to experience their cousins, aunts and uncles...something they only get to do about once a year. It was priceless to see them curl up with their older cousins on the couch, play cards with their aunt, and just be kids with all their cousins. We even got to visit with our friends from Florida. Wendy and her family came up for vacation during the same week, and Caroline and her family (who moved to TN when we moved to TX) all came to visit. The week was over way too soon.

We returned late Saturday evening. At bedtime, Logan's temperature was elevated to 100.5. A few hours later he was at 102.5, which sent us to the Emergency Room at Texas Children's at 4:30am Sunday...our first trip there. We've been very lucky, and have never experienced the dreaded unknown fever all during chemo treatments. I guess it was our turn to experience the thrill.

Nine hours in the ER, 4 doctors (at least, I truly lost count) and 4 nurses later...I won't go into details...but I will give other Histio parents this tip: If you can choose where to have your fever treated, go to your normal Hem-Onc. Ideally, our children would get their fevers during normal business hours and we could give them the best care. Now that we're all done laughing, we know that won't happen. Just let your Hem-Onc staff know about the fever as soon as normal business hours permit.

Logan was given two different antibiotics just in case there was a bacterial infection. So far, all tests have come back negative. The ER staff assumes that it was some kind of viral infection, so antibiotics won't help. Logan's temperature was back to normal all day today. Let's hope we've seen the last of it.

Friday, 7/14/06

I sure hope this works! For those of you who haven't heard, I experienced my first hard disk crash after...what...20 years of too much time in front of a computer. Thankfully, I have pretty recent backups, so the important stuff is covered. The website was online, so I figured I was safe. I'm learning that it's not always as easy as it seems.

We went to the much anticipated Big Meeting in Cleveland this past Saturday-Monday. Thanks so much to Mike Golding for organizing and bankrolling the event. For those of you that don't know Mike's story, he lost his precious 1 month old daughter, Sydney, to JXG (a form of Histio) four years ago. Rather then let that end his world, he rose to the challenge and took up arms against Histio. He is now a passionate supporter of Rainbow Babies Hospital in Cleveland as well as all things Histio. If you want to meet someone who's changing the world for the better, introduce yourself to Mike.

At The Big Meeting, the doctors gave us a chance to expand our knowledge about this disease and the late effects possible. We were reminded of how little everyone knows about this wicked disease. We really enjoyed meeting all the other families, but could have spent another week talking to everyone. Unfortunately it passed much too quickly, and we were only able to say "Hello" to some families with whom we've swapped emails for months. The enthusiasm to beat Histio grew among families, with discussions on how we could align everyone to accomplish this one goal we share. We'll be working on that over the next few months.

For those of you who missed the event, there are things in the works to get you some of the information you missed. Give us a few weeks. The Histio Histories book that Maggie Markgraf put together came out Amazing! Roughly 80 Histio families tell their stories of dealing with this disease. Some stories give us much needed hope, most break our hearts. We're still reading through this giant book. Thanks for all who participated. Our giant plaques that the families did for Mike Golding and mOjO Cosgrove came out absolutely beautiful. These awards were given to say how much we appreciate their hard work on The Big Meeting and The Big Fix, and how much it means to all the Histio children. Thanks to all for helping and participating. Mike and mOjO were very touched by these gifts.

Monday was supposed to be a quiet day before we boarded the plane to come home. Instead, Logan woke up vomiting, and continued all morning. Was it a "bug" he had caught playing with the other Histio kids on Sunday? Or was it issues with chemo or iron? Since he's been doing so well, we hadn't packed any "tummy medicine" for the short weekend. Big Mistake. Dad raced all over Cleveland by cab to find Zofran while Mom went through all the hotel towels with Logan. Logan was still vomiting when I returned. Within minutes of giving him his Zofran, he was dancing. A little food and he was ready to take on the world. All in a typical day of a family fighting Histio.

Tuesday, 6/27/06

Oh, we've been busy working on The Big Fix and The Big Meeting, all big events supporting Histiocytosis via the two most critical elements: fundraising and awareness. Logan continues on Maintenance chemotherapy with one dose of 6MP every other day. He has been tolerating it well, and all seems to be going fine. We're looking forward to our trip to Cleveland in a week and a half to attend The Big Meeting and meet all the other Histio families.

I hope you're all following The Big Fix riders on their ride across country. If you need a link, I've put one in the middle of our Home Page. Thanks for stopping in to check on Logan!

Wednesday, 6/14/06

Sorry for the long delay...We've been busy! And we still are. I'll update the news in the next few days. For now, though, please know that we are doing well. Some good news...Dr. McClain did call last week to say he sat down with his radiologist and took an extra-close look at Logan's CT scan. Even though they didn't have the full region imaged, they were able to see 1/2 to 2/3 of the area in question. From that, he said the soft tissue component (tumor) was significantly reduced, so he felt confident in waiting for 3 months for Logan's next CT scan. That's our plan.

Dr. McClain leaves tomorrow for The Big Fix! Yesterday we went downtown to Texas Children's to join in his press conference/media event and wish him well. I have a video of that (thanks to Channel 13) and will post it shortly. In addition to Dr. McClain, two handsome boys figure prominently in it, and I wasn't even directing the camera!

Monday, 5/29/06

With our most recent check, we raised $1,001 with our Houston area "Meet the Riders" event. Thanks again to all who attended, all who donated, and to the three riders!

Sorry for the long delay in writing. I have to be honest, as our family battles this disease, there are times when the turn of events just sucks all the energy from me. I don't know what to say and I don't feel like writing or talking about it. I hide away for a while until I can get my energy back up to a functioning level. I guess I'm back to that level again. Here's how it started.

Logan had his latest CT scan on 5/8/06. It was early in the morning, and just before he went in to be scanned, he fell asleep in Mom's arms. He sailed through the scan with no anesthetic. One less thing to worry about! We waited for our office visit with Dr. McClain and were hoping for (and expecting) good news from the scans. Just before we were called back, I met a mother and young boy who I had seen there before...another LCH family. Her beautiful son was now fighting his second recurrence of LCH, and this time it was in his brain. This is our biggest fear for Logan. Her son's LCH started on the mastoid, just like Logan's.

As we've been fighting LCH, it seems good news doesn't come often, and when it does, it comes with a "catch." We were called back to talk to Dr. McClain at this point. The preliminary results of the CT scan came back during our discussion. Dr. McClain said the scans showed Good News. He was happy. Donna was all smiles. I had an uneasy feeling I couldn't shake. Maybe it was my parents raising me to be a healthy skeptic, or the fact that we so seldom hear good news with LCH. Maybe it was the discussion I just had with the mother and son in the waiting room. Maybe just Father's Intuition. I asked for a copy of the report, as always, and we packed up the boys and headed out to celebrate a little.

The boys picked their favorite restaurant, Chuck E. Cheese. For those that have never been, it's a glorified video game palace that serves Pizza. The first thing they ask when you walk in the door is, "Are you celebrating anything tonight?" On this occasion, I responded, "Yes. We just came back from Texas Children's Hospital. The tumor in our son's head is now GONE!" She responded, "OK, well enjoy yourself tonight." Donna and I looked at each other as the kids ran off. "Gee," Donna said, "they brought a cake on his birthday." Evidently 'Disappearing Tumor' is not on Chuck E.'s "Celebration" list.

When returning from a day at the hospital, life is in chaos for a week or so afterwards. The CT scan showed Logan had what looks like a sinus infection. Erik has been fighting the same thing, so Donna took them both to the Pediatrician, along with a copy of Logan's CT scan report. Donna read it while standing next to me, and asked, "How does this compare to the previous scan?" I hadn't had a chance to compare yet, so I printed the previous one out, too. The previous report had a "Orbit" scan which read very much like our current report...all good news, nothing really out of the ordinary. The previous CT also had a "Temporal" scan and report. It's a different area of the head, and the most important for Logan, since that's where his tumor was. Well, that report was missing from the current scan. After some swapping of email and phone calls, we found the wrong scan was done.

We spend a day at the hospital, $4,000 on a CT scan, and most importantly, subject our 3 year old son's developing brain to the equivalent of 3,000 to 6,000 chest Xrays. The result? We know nothing more then we did when we started the day. Now the dilemma. Do we redo the scan to find out what's going on, and in the process subject our son's brain to another 3,000-6,000 chest Xrays? Or do we wait for another 3 months for his next scheduled scan? Remember, the tumor had eaten through his skull and was pressing up against the lining of his brain. Is it truly gone, so the wait won't make a difference? Radiation is cumulative. What's the likelihood that another CT will do permanent damage? I never thought we would have these kind of decisions to make in our lifetime. We're still debating...

Both boys have sinus infections, and Erik had an ear infection as well. They've been on antibiotics for 2 weeks, and will likely be on them another 2 weeks until we're sure it's gone. This, however, doesn't slow the boys down. The neighborhood pools have opened, and our 2 fish have been living it up! One pool has a 2.5 story water slide, and Erik had slid down 50 times by closing time. Logan puts on his goggles and dives to the bottom of the pool to get his torpedo. Kids just want to have fun! I watch them with wonder and amazement every single day.

Wednesday, 5/3/06

Erik is feeling better, and the vomiting stopped on Monday. Yesterday he was happy to lay in bed, sip water, nibble crackers and watch TV. Donna and Erik are still living upstairs. Logan, who is missing his Number One Best Friend, has now adopted Dad to fill that roll. Both boys are bored, and looking for near constant attention. It has been a challenge to try to accomplish anything else. Our Number One Goal, as always, is to keep Logan as healthy as possible. He and Erik both have stuffy noses, though I think Logan's is allergies. He's fine all night long, but stuffs up as soon as its daybreak.

Thanks again to everyone who has donated to the Histiocytosis Association, sent gifts to the boys, brought meals to us, looked after our dog, signed our guestbook or sent email, sent prayers our way, and generally watched over us. Your generosity has truly saved us and our sanity.

Monday, 5/1/06

Yesterday afternoon we took the boys to the beach for a much needed break. We had to practically drag Erik out of the van. He wanted nothing to do with the salt water. He was spoiled in Michigan, and was surprised that the water in the ocean didn't taste the same as in the Great Lakes. We finally convinced him to "just walk down the beach, and not go in the water." Within 5 minutes, both boys were soaked and ready to get in their bathing suits. They had a fantastic time, and Mom and Dad enjoyed a few hours of relaxing and watching the boys have fun.

Today, well, we needed our energy. Dr. McClain did some more research about 6TG, Logan's current Maintenance chemo, and found that it is NOT our long term solution. Actually, we should stop it immediately, and temporarily switch back to a smaller dose of 6MP. You may not recall, but 6MP is the drug that sent Logan's liver functions into the stratosphere (that's a bad thing). Logan has his CT scan in a week, and Dr. McClain will test him at that time to see if he has some particular sensitivity to 6MP.

While Dad and Logan were up in the hospital getting the blood test, Mom took Erik to Burger King to get a couple shakes for the boys. Erik had a cough and stuffy nose today, so we didn't want to expose the other kids on the 14th floor, just in case. Erik insisted that he was starving, and needed something to eat. Donna got him food, they both sat down, and Erik projectile vomited. The vomiting has continued for the last 8 hours, though not as, uh... "spectacular" as the first. He has a slight fever, and is happy to just rest. Since Donna has been exposed, Erik and Donna are now living upsta