Journal

02/08/10

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A more "day by day" record of events, rants, raves, and observations.

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.

bulletTeaching Logan how to take pills!
bulletDoc says Logan has "Perfect Hearing" in both ears!
bulletLogan's "Cradle Cap" (the skin portion of the disease) is disappearing fast.
bulletThe "Bump" between Logan's ear/eye disappears after first day of treatment. This "Bump" was the indicator that started the big chain of events that led to a diagnosis of LCH.
bulletThe ear polyp and bleeding haven't returned!
bulletAfter all the scans, it appears that Logan's disease is isolated to a single location on his skull, and the skin on his scalp.
bulletAfter first 6 weeks of chemo, Logan's tumor shrinks by 60%
bulletChemo side-effects appear to be minimal.
bulletChemo is finally done on 4/18/07! May we never see LCH again!
bulletLogan's port removed on 4/24/07.

Journal

Most recent stuff first!

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!

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:

bullet#1 - Top Rated (This Week) - Travel and Places
bullet#1 - Top Rated (This Month) - Travel and Places
bullet#45 - Most Viewed (This Week) - Travel and Places
bullet#7 - Top Favorites (This Week) - Travel and Places

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 upstairs, Dad and Logan downstairs.

Saturday, 4/29/06

We had our Houston area "Meet the Riders" event to support our three area riders participating in The Big Fix this summer. Thanks to all the families for coming and donating, to the Carroll family for assisting and suggesting the Children's Museum (awesome for the kids!), and thanks especially to our three riders: Jill, Walter, and Dr. McClain. We had about 50 attendees with the kids, and raised $961. Photos are here. It was great to meet all the families, and to put faces with names.

Wednesday, 4/26/06

Forgot to say that the boys went to a birthday party for Pastor Cortez's son this past Saturday at "Pump It Up," a local place with a gym size room full of GIANT inflatable slides, bounce houses, obstacle courses, etc. It's a paradise for kids. The boys had the time of their lives! It was great to see them laugh, run and bounce themselves silly. At the end of the hour (plus a little cake), they both fell asleep on the ride home, so Donna and I took a much needed quiet drive in the Texas countryside.

Tuesday, 4/25/06

Blood tests at Texas Children's yesterday show that Logan's liver functions are back in the "normal" range. A good sign, though we're concerned that the drug manufacturer says it can still cause damage without raising liver functions. Dr. McClain is checking on that for us.

It's hot in Texas, so the boys went swimming with Mom over the weekend. Dad cleaned the pool and didn't go swimming. I'm still waiting for it to warm up a bit more. I was definitely spoiled with our pool in Florida and the solar heaters. They don't use them here in Texas, which seems mighty strange to me. One thing that I've definitely found...no matter where I live, they always do some things differently. Roll with it...

Donna appears to have caught something nasty. We believe it's rotavirus from working in the nursery at church over the weekend, since she's the only one with it so far. She's moved into the guest bedroom and is trying to stay away from the rest of us to spare Logan. We've already had one battle with the rotavirus for both the boys when we moved to Florida 2 years ago. I've never cleaned up so many body fluids in my life, and it sent Erik to the hospital for 3 days. We'd like to avoid that again, but I sure feel sorry for Donna.

We continue to get RSVP's for our "Meet the Riders" event in Houston. We're looking forward to meeting lots of new faces!

Friday, 4/21/06

Logan has been on 6TG (Thioguanine) for almost 2 weeks. His blood test on Monday showed that his liver enzymes came way down, almost back into the normal range. It appears that 6TG is not as hard on his liver as 6MP, so that's a good thing. We had some questions regarding 6TG, since the manufacturer warns that it shouldn't be used for Maintenance Therapy (which is what we're doing), and that it can damage the liver, especially in males, without raising the liver enzymes. Dr. McClain is checking on the warnings for us. We go back in for another blood test on Monday.

Logan seems to be doing well overall. He still has the rash on his cheek, though it's not as bad as it was before. He also has a small bruise in the same location, and it doesn't go away. Strange. He's a little more fatigued with this medicine, and he has begun to eat more. Not more variety, mind you, just more often from the limited selection of foods that he likes. We just wish those foods were fruits and veggies. I imagine most parents of a 3 year old wish the same thing.

We continue to work with other Houston area LCH families on a "Meet the Riders" event. We have three Houston area bike riders that are participating in the Big Fix cross country ride this summer to raise money and awareness for Histiocytosis. If you're in the Houston area, please join us.

Thursday, 4/20/06

It was a year ago today that we sat in a room with a pediatric neurosurgeon from Tampa and the Director of Hematology-Oncology for Southwest Florida Children's Hospital and received news of Logan's LCH tumor. Of course, on that particular day, we didn't know it was LCH. We just knew he had some tumor that had eaten through his skull and was much too close to the brain for comfort. It was in such a bad spot, that a pediatric neurosurgeon wouldn't risk surgery even with a whole team of supporting doctors.

From those days around Logan's diagnosis, there are a few memories that I can't erase. Just the day before, Logan had a CT scan to see if the Ear Nose and Throat surgeon could figure out why he was having problems with his ear. For those of you who have never experienced a CT machine, it's about the size of a small car, and the patient is on a table that slides into the machine. For the rest of my life, I will have the image of my 2 year old look at me with terror in his eyes as he was strapped to the CT table. Time after time the nurses tried to drug him up enough to get him to lay still, and he would spit it out, screaming and crying. Just learning how to talk, he looked up at me standing next to him and begged, "Daddy, HOME." May none of you ever have to go through that, and no other children, either.

I wore a lead vest and sat on my knees next to Logan, holding his hand to calm him during the CT. By the time the scan was over, he finally had dozed off from the drugs. I walked into the control room, where the technician was reviewing the CT scan of my son's skull on TV monitors. Looking at the monitors, I could see every detail of Logan's head, from his sinus cavity to the skull bones that protected his brain. "He's only two years old," I thought. "What could possibly be wrong with such a little guy?" Staring at the monitors, it felt odd to be peeking inside my own son's skull, like it was something I shouldn't be doing. I had never seen a skull CT, but it was instantly obvious to me that something was definitely wrong. The image of his right ear showed a pitch-black area, signifying the air space of the inner and middle ear. The left side of his head, the side that he had his continuous "ear infection"...where his inner and middle ear should be...it just showed a mass of grey. "Shouldn't that left side be a mirror image of the right side?" I asked. The technician nervously looked over his shoulder at me and said, "Uh, I'm just here to make sure we captured a good image. Your doctor will have to read the film."

Our Ear-Nose-and-Throat surgeon was the best in Southwest Florida. He was our second ENT specialist. When the other doctor's and ENT's were stumped or in over their heads, they'd send their patients to this surgeon. I still remember what he said when he called the night of the scan. "Mr. Johnson, I've seen Logan's CT scan. I've been practicing for 35 years. Holy Shit!! I've never seen anything like this."

We left the hospital one year ago today with the knowledge that something was very wrong, and Logan would have lots of tests, scans and surgeries over the next couple of weeks. We were to go home, 'rest,' 'relax,' and get ready for what lay ahead of us. Donna and I didn't talk a whole lot on the ride home. We were too stunned to know what to say. We decided to take the boys to a park along the water to let them have some fun. Even though I had driven to this park a dozen times in the previous 6 months, I missed the turn 3 times in a row. Guess I was a little preoccupied. We let the boys out of the car, and they ran, screamed, climbed and slid. Donna and I held hands and watched our boys, taking a little comfort in the fact that Logan was oblivious to the challenge that he faced. "I wish we would have brought the camcorder," Donna finally said. "It may be the last time..." She couldn't finish the sentence. She didn't have to. I was thinking the very same thing. "It may be the last time that we see our little boy run and play, laugh, smile, chase his brother, or slide down the slide."

Thursday, 4/13/06

Listen to the phrase "Maintenance Therapy." Sounds soothing, doesn't it? For an LCH family, it's a chance to take a breather and enjoy a little success with crossed fingers. Not so for us yet. It's been a busy week. Monday we found that 6MP has caused all of Logan's liver functions to skyrocket, which is a bad thing. He seems to be one of those "rare children (wait...I have déjà vu)" that 6MP doesn't treat well. We now switch to a chemo drug called Thioguanine. For those who care, (in simplified form) 6MP is metabolized by the liver and converted into Thioguanine. By giving Thioguanine directly, Dr. McClain is hoping to bypass the step in the liver. Dr. McClain has never had to do this for an LCH child. Oh how I hate being the first. Let's hope it works. We go in for blood counts again on Monday.

Ever want the daylights scared out of you? Read the drug information from the manufacturer for the chemo you're giving your child. It's a 100% certainty that it will give you restless nights for the rest of your life. Guaranteed.

If you've been reading lately, you know my luck with prescriptions this last month. Monday night was no different. We came home from a long day at the hospital and rush hour traffic, drop the family off, and go to the drug store to fill the new RX. "What? We don't stock that! We can't even ORDER that!" After many calls, it appears the only place to get the drug at the moment is from Texas Children's Hospital. So Tuesday I drove back downtown to get enough to see if it's going to work for Logan. Oh, and "No, we don't accept any health insurance for prescriptions." (What the??) You can use your credit card, though.

Logan has been fighting nausea with 6MP, something he has had very little trouble with, even with all the different chemo drugs. We had hoped this new drug would change that. No such luck. We met the "Vomit Comet" within 12 hours of giving it to him for the first time. His tummy has been more unsettled since starting this drug. On the bright side, our fight with the insurance company regarding his Zofran (anti-nausea medicine) has come out in Logan's favor. One step forward, Three steps back, that's the LCH dance.

Just to add to the excitement, Tuesday night Erik's cold turned to fever, sore throat, ear infection, a trip to the pediatrician (with a warning to keep him away from Logan), higher fever, and antibiotics. Remember, any temp over 101 for Logan automatically sends him to the hospital for a minimum of 3 days. So picture this: Two boys, who's only real friend for their whole life has been the other, are now told they can't play with each other for a few days. We have Erik on the second floor, and Logan on the first floor. Can't share toys, can only yell to each other over the balcony. They're both sick, both cranky, both bored. It's not a pretty picture. Logan was checked by the same pediatrician today, just to short circuit the process if need be. She thinks he's OK for now, but we should keep a close eye on him. Are you kidding? After this past year, if we watched him any closer we'd need a Scanning Electron Microscope...

Thursday, 4/6/06

The boys had a great time while Aunt Jayne was here. They went to the splash park two days in a row (it's 80 degrees here), and went on an Easter Egg hunt in our neighborhood. They stuffed their mouths with candy and then sat with the Easter Bunny, happy as could be.

Logan continues on maintenance therapy of 6MP chemo given at home. Both boys are fighting colds (mainly a nasty cough) at the moment. We had hoped we had seen the end of the nausea for Logan, but such is not the case. Nausea is very rare on 6MP, we are told; but then LCH is rare; medi-ports flipping is rare... we've had them all. I'm taking Logan to buy Lotto tickets from now on.

Logan doesn't look "sick." We're told this fairly often, and we're happy that he doesn't. For the most part, no one would ever know. We notice things because we live with him everyday. His hair is a little thinner, and he has his medi-port in his chest. Those are about the only outward signs. He tires easily, and anytime he needs to walk more then 100 yards or so, he asks to be carried. Is this because he's truly tired from chemo and his low blood counts, or that he knows he can get away with it?? It's probably a combination of the two. We encourage him to exercise and try to make it fun for him; but we will break down and carry him if we can't distract him. Both of the boys are not as social as some of their peers, mainly because we have sheltered them, I imagine. We figure that will come in time. God has also given us two of the most finicky eaters the world has ever known. My father is looking down on me and laughing. Donna's parents as well. Payback...

We registered Erik for Kindergarten. He starts August 10th. Boy, how that will change our lives! Erik is also playing soccer for the first time. Sometimes he's interested, sometimes he'd rather have Skittles.

We are working with some other Houston area LCH families to organize a "Meet the Riders" event. We have three Houston area bike riders that are participating in the Big Fix cross country ride this summer to raise money and awareness for Histiocytosis. If you're in the Houston area, please join us.

Friday, 3/31/06

First, please take a moment to pray for the Dean family. Their 4 year old son Dustin lost his battle with LCH March 17th. What started as a small dot on his cheek spread across his body and took his life in the span of a few months. Donna and I take this news especially hard. This is at least the third child in as many months. Hug your children. Then raise awareness for this disease.

Every LCH family has a story to tell. Most start with a seemingly innocent observation; a limp, an ear infection, cradle cap, an unexplained rash. Usually this is followed by months (or even YEARS) of misdiagnosis. Then comes the date of diagnosis, when your world comes to an absolute screeching halt. Every parent can tell you exactly where they were and how the news was broken to them. 

An editorial comment on my part: For those in the medical community who don't take this disease seriously...WAKE UP! This wicked and DEADLY disease is stealing our precious children right in front of our eyes! Parents, we need to raise awareness for this disease. Many pediatricians can't remember their limited training on Histiocytosis. Many who treat it see the vague statistics and say, "Oh, most children do fine with this disease." Many oncologists won't go through the mountain of paperwork and red tape required to register our kids on protocol. Instead they just use the protocol "as a guide." Science doesn't learn from these children, because their results are never reported. Protocols are cancelled because too few doctor's sign their kids up for the studies. In 1998 the Histiocyte Society initiated a prospective international study of LCH-CNS (central nervous system), something that Logan faces. After FOUR YEARS the study protocol was closed because they couldn't get enough children signed up. What would we have learned from that study 8 YEARS ago, and how would my son's life be different? We'll never know, and that's a very sad commentary on how our medical system is currently organized.

One last thought, and I'll get off my soapbox for today. Dr. Salman, our oncologist in Florida, made a very wise observation. He told me, "Years ago, leukemia was essentially a death sentence. Each oncologist was convinced he knew how to treat his patient best, and no one followed the protocol. Later, all leukemia patients went on protocol. We learned from each child, we found the best drugs and refined the dosage. Now leukemia is 80% curable." Wouldn't it be great to do it for LCH, too?

We've been through nearly a year of chemo treatment, and Logan just began "maintenance therapy," which is a lighter dose of chemo given at home every day. Logan has been through three other chemo drugs, and at higher doses. We figured this would be a calk-walk compared to the past year. Nothing is ever as easy as it seems.

Our corner Walgreen's doesn't accept our new insurance (what the??), so I was standing at the CVS pharmacy counter at midnight last Monday. Within a day of switching to the new drug, Logan developed a rash on his cheek. Over the next few days, this spread around his lips. Four days after maintenance treatment started, Logan vomited from a sound sleep. Clean him up, give him some crackers and water, and he falls back asleep. Thirty minutes later, he vomits again from a sound sleep.

OK, nausea is a side effect of chemo. But we've been through a year of higher dose chemo...3 different drugs...and only had mild nausea issues with one of them, and it was notorious for nausea. This was supposed to be the Easy Stuff! So we started giving Logan Zofran, an anti-nausea drug. And get this, Zofran is so expensive, most insurance will only pay for 20 tablets a month. That's a little less then a weeks worth of meds. What do you do for the other 3 weeks?? And we take this medicine for a YEAR?!?

Dr. McClain says Logan's rash isn't a rash typically associated with 6MP, his current chemo. Our pediatrician believes the rash is simply dry skin from the recent cold, dry weather. We scratch our heads over this, since we've lived in Michigan (cold, dry weather along with a heated house...talk about static-zap-dry!) and spent all winter in Texas (cold, dry, static zap), and never had an issue with dry skin for Logan. However, we started putting lotion on his face, and it looks much better. We hope that's all it is. Sure was coincidental that it showed up exactly when we started this new drug. Perhaps that drug dries the skin a bit, combined with the cold weather?? Like I said, nothing is ever as easy as it seems.

Aunt Jayne flies in tonight to visit for the weekend. The boys are really excited to see her.

Thanks to all of you for checking on Logan and keeping him in your thoughts and prayers.

Thursday, 3/23/06

Logan is doing well. He has begun his maintenance chemotherapy of 6MP, administered at home. His blood tests show that his immune system is slowly coming up, so last night we let him go to "Rainbows," the children's church group. It's clear from his interaction with the other children, or lack thereof, that he's been sheltered this last year. Since we've been a little more flexible, Erik has quickly started to climb the social learning curve. We're confident Logan will as well. Delayed socialization is a small price to pay to keep him healthy and alive.

Logan's immune system will be depressed for at least the next 18 months while on chemo and for the 6 months following treatment. Any exposure to chicken pox for him would be life threatening, so we're still very cautious about what we let him do. We think it's important that we let him be a little boy, too, so we're walking the balance beam.

Our heart (and stomach!) felt "THANKS!" to Phyllis and Kent Boyd for the excellent dinner this past Monday. After a long day at the hospital, there's nothing better then a home-cooked meal. We had enough food for 2 days! Our new-found family at church has kept us well fed on hospital days. THANKS AGAIN!

Tuesday, 3/7/06

Another week of chemo done. Hopefully, that will be the last IV chemo Logan will ever need. While the thought is that the current chemo drug (2-CdA) has finished off the tumor, we will never know for certain. In two weeks Logan will start his maintenance therapy, which will include chemo over the next year that we can administer orally at home. We have mixed feelings about being "off" IV chemo. On one hand, it marks progress and, hopefully, the end of LCH and the return to a more normal life for all of us. On the other hand, we've heard far too many families that have gone off IV chemo only to have LCH return with a vengeance, some even worse then before. If LCH does return (a 50% chance), Logan has already had the 3 front-line and salvage therapies. Vinblastine helped, but further use could result in permanent nerve damage. Methotrexate made almost no impact. Finally, 2-CdA seems to have taken the tumor to zero, but we had to use 6 full courses to do it. 2-CdA is not recommended for more then 6 courses. To treat any recurrence would probably mean using another drug, not nearly as proven as these drugs.

So, let's hope and pray that this is the end of LCH, and we never see it return.

Logan is feeling good and looks great. Aside from being tired on the day of his chemo treatments, he is doing well. We went to the local hospital to have his blood drawn yesterday. We don't have results back, but that was far more convenient then going all the way downtown.

Monday, 2/20/06

Logan had his latest MRI today. Results show that the tumor on his skull has improved (smaller), but is still there. While it's not the news we were hoping for, it still is progress in a positive direction. Our trooper will start another round of 2-CdA on Monday, and then go on Maintenance in a month. After 2 months of Maintenance, he will have a CT scan to see how he's doing. Next week will be another long week of hospital trips; but we'll endure anything to make him better. He's the one doing the hard work.

Thanks to everyone for checking out Logan's Gift Shop. We had our first order the same day it opened! Proceeds benefit Histiocytosis research. Take a look for yourself!

Sunday, 2/19/06

Logan's latest MRI is scheduled for tomorrow. The results will decide if we continue with "heavy" chemo (because the LCH still shows in his skull) or "light" chemo for maintenance. "Heavy" chemo is done at the hospital, as it has been for the last 10 months. "Light" chemo would be done at home, orally, and would continue for a year. We should have results in a week or so. Keep your fingers crossed and your prayers strong! We want to hear that the MRI shows "All Gone!"

We've been keeping ourselves and the boys away from crowds and out of the cold and rain that is visiting Texas. Logan's counts were low earlier this week from the chemo, so we're keeping him a little sheltered in the hopes that we can keep him healthy. Thanks to our neighbors, Haley and Maddie, for sharing their bounce-house with the boys. We have it set up in our formal dining room (like we'd ever use that room), and the boys come downstairs and burn off some energy a few times a day!

Tonight also marks the opening of "Logan's Gift Shop." We're very excited to hear what you think. This is our approach to raise awareness and research funds for Histiocytosis. Take a look and tell us what you think!

Tuesday, 2/14/06

Lots of things going on. You've probably noticed the "Logan's Gift Shop" tab on each page. We decided to make our own line of greeting and note cards to benefit Histiocytosis research. Watch the space over the next few days. Should be interesting.

Logan turned 3 over the weekend! Boy, that time sure has gone fast... I remember my parents saying that when I was a child. I understand the phrase now. Since he just came off chemo, we didn't do anything very exciting, and nothing around crowds. We'll have a party with his new friends and neighbors when his immune system is back up.

Logan had his pentamidine (to prevent pneumonia) and blood drawn at the hospital yesterday, and he did super. His counts are low, but they've been lower. He's feeling good, so we're happy!

Finally, I just want to give a special "THANKS!" to all of you for supporting us this past 10 months. Your prayers, emails, meals, gifts and donations have been overwhelming and extremely helpful. Y'all (I can say that word now that I'm in Texas!) remind us that we're not alone in this battle. Thanks for your help!

Friday, 2/3/06

Another week of chemo completed. Logan is doing well. We celebrated with a stop at Ben and Jerry's Ice Cream, and the boys each had a bowl of ice cream and M&M covered brownies that was the size of their head! Logan took his long nap, and seems to be your typical 2 year old about to turn 3 year old...no apparent ill effects.

Thankfully, our health insurance issue seems to have fallen into place. We called on our way to the hospital on 2/1 to confirm. Not that it was going to make a difference...we were going to get treatment for Logan no matter what...just to relieve some stress. They confirmed, verbally, that our application was accepted and effective 2/1: no gap in insurance. Yahoo!

Thanks to two more members of Family Life Assembly: Lisa and Joey Tuttle. They arrived with a wonderful home-cooked meal and stayed for a nice visit. Thanks for watching after us!

Wednesday, 2/1/06

Ever had a child with a life-threatening illness, going through chemo treatments, and had your health insurance terminated? We hadn't either, until today. Our Blue-Cross policy ended yesterday, because we no longer reside in Michigan. Did you know health insurance was state specific? The things we've learned... They kindly offered to transfer our policy to Texas, with MONTHLY premiums of $3,300. (No, that's not a typo.) With luck, our new policy (different carrier) will be effective starting today. We've had our share of challenges with that application, and we likely won't have a solid answer for another 2 days. Suffice it to say, stress levels have been running higher then the normal "high" around here for the last 2 months...

I don't get on my soap-box very often, but indulge me just a moment. Donna and I have been on Blue Cross health insurance since BIRTH, with never a gap of even 2 seconds. To go through what we have in the last months...the phone calls, letters, paperwork, exceptions, road-blocks...it is truly a colossal system intended to frustrate and confuse. If ever there was something that is beyond broken and needs to be fixed, it's health insurance. There's a billboard we drive by on the way to the hospital. It's from Blue Cross, and it says, "We're here for you." As long as we're not sick and don't move, I guess that's true. I have so much more to say, but I'll stop there. I'd hate to sound bitter...

Tuesday, 1/31/06

Two days of chemo done, two more to go. Logan has been tolerating it well. He gets very tired after treatment, and his hair is thin and very brittle. He'll usually sleep for 3 hours or so after treatment, and then still go to bed at his normal time.

For those of you not dealing with such a wicked disease, let me give you some insight. We're coming up on (hopefully) Logan's final "formal" chemo treatment. (He still will have a year of chemo given at home.) We're thrilled, as you might imagine. We're also terrified. LCH is a very sneaky disease, and has a recurrence rate of 50% Some say it never "goes away," it just lies dormant...waiting. Many times it makes no outward signs visible until it is well along in its dirty work. When you have a child with LCH, you question EVERY SINGLE LITTLE THING that seems out of the ordinary with your child. "Is this the return of LCH?" It's a gnawing feeling in the core of your soul.

Some of you may be thinking, "Aren't you over-reacting? Relax. The doctors be doing follow-up. They'll catch anything unusual." One thing is crystal clear to me. Had Donna and I not been keenly observant and extremely persistent, we would be in a far worse place then we are right now. I've heard many other Histio families relate similar stories. And this is something to watch for the rest of Logan's life.

Monday, 1/30/06

Another week of chemo treatment has started. With any luck, it will be the last one Logan will have to receive for the rest of his long, healthy life. We're hoping for the All-Clear at the end of February when he has his next MRI. If that's the case, then he will take oral chemo at home for the next 12 months as a "maintenance" therapy. Follow-up scans and doctor visits will continue for life, just like me.

So, for all of you that haven't been through chemo treatments, this week means VERY LOOOOOOOOOOOOONNNNNNNGGGGGGGGGGGGGG days at the hospital. Yesterday we were gone 10 hours. Add two young children to the mix. You get the idea. It makes for a draining week.

Thanks so much to Janis Young and her son, members of Family Life Assembly. They were kind enough to bring the thing we wanted and needed most after a long day at the hospital: a home cooked meal! It was awesome!

Sunday, 1/29/06

WOW! What a day! Our many "Thanks!" to the congregation of Family Life Assembly church of Katy. They warmly welcomed "our family" into "their family," which is very comforting when we don't know anyone else here in Texas. They all joined in and prayed for Logan, and then overwhelmed us with their generosity and willingness to help in any possible way. You just made our burden much lighter. Thanks Again!

Saturday, 1/28/06

2006 has not started out as a good year for Histio children. I'm very sad to report the passing of two beautiful boys who have been fighting this terrible disease. Tucker and Brady's battle has been a very personal one for Donna and me. We would cheer when their families reported good news, and we would cry when the news was bad. It's a Histio family's worst nightmare, and it could just as easily be us. Please keep their families in your prayers.

I was reflecting back on 2005, and I've told you about it's impact on Logan, and Donna and I as parents. I thought I'd share these moments, too.

Logan has an older brother, Erik, who just turned 5. Erik insists that he is "an essential part of the Chemo-Crusader Team," and he must attend everything that his little brother goes through. They are each VERY protective of the other. Erik can name every component of the blood, and what it's function is. Impressive and sad at the same time, isn't it?

The hospital staff passed out stars to the kids before Christmas, and asked them to write their wish on the star so they could post them on the wall for everyone to read. When they gave one to Erik, we expected him to wish for "A Star Wars battle droid" or "Star Wars Battlefront for our Playstation." Instead, without prompting, and without missing a beat he said, "I wish my little brother Logan would get better." That's the star they put on the wall.

I still remember the week Logan was going through staging in April. All 4 of us had been in the hospital all day long, every day of the week. At night, Donna would sleep in the hospital room with Logan, and Erik and I would sleep in our small motor home we had parked in the hospital parking lot. We needed showers, and to check on the house, so I took Erik with me for a few hour break. I got him all ready and put him in the shower, and then turned to get ready myself. Normally, I would hear a screaming, stomping 4 year old, thrilled to be in the shower...I heard nothing but running water. I turned to look, and Erik was sobbing uncontrollably in the corner. His whole body was shaking. When I asked him what was wrong, he couldn't even form words he was so upset. Finally he just blurted out, "I take my showers with Logan. I want my little brother home."

This disease affects the whole family, and it really stinks.

Monday, 1/17/06

Logan had his blood checked last Thursday. His ANC and White Blood Count (WBC) are each at all time lows. This is not a good thing, but somewhat expected. Chemo can really knock down your immune system. For those of you new to this, WBC and ANC are measures of your immune system...the lower the number, the greater your risk for infection. A "normal" WBC is 6-15 (Logan's is 0.96). A "normal" ANC is about 1,000-5,000 (Logan's is 196). An ANC of 500 is classed as "extreme risk for infection." Since Logan is not even half that amount, we're watching him very close, and playing a little bit of "hermit" with him.

To add to the fun, we all have colds, Logan included. Erik had one day of fever of 103. Logan, luckily, has not had any fever. A temp of 101 automatically sends Logan to the hospital for admission and 3 days of IV antibiotics. We've been lucky so far, and have not had that experience. Let's hope our luck holds out.

My lovely wife has spent the last 4 days glued to a computer screen reading medical articles on Histiocytosis, blood disorders, and blood components. She's got some interesting theories that she's exploring. We just each wish we had a better medical background. The internet is a wonderful thing!

Saturday, 1/7/06

A new year, and we're all hoping for a better and less stressful year then 2005!

The boys (and the rest of us) had a great holiday season. Too many presents, and a nice visit from Aunt Jayne and Uncle Phil. While I missed my family (first time not going back for 17 years or so), I didn't miss the holiday travel or the cold and snow! Sorry, I haven't mailed any Christmas letters out yet. One day, I'll get to them!

Logan just finished his 4th round of 2-CdA yesterday. His treatment was compressed into 4 days, since Monday was classed as a 'holiday.' As a result, he received 25% more chemo each day. While we were concerned about its effect on him, he seemed to sail through just fine. He still got tired after each treatment, and usually took a nap afterwards, but that seemed to be the only outward side effect.

A week of treatment is extremely draining on the whole family. We leave first thing in the morning, and don't get home until very late afternoon. While the treatment is only about 2 hours long, it's the WAITING to go back to the infusion area, waiting to get accessed, waiting for the chemo, waiting to see the doctor (only one day a week, thankfully)... For those of you with small children, you can understand how the waiting and the attempt to watch and entertain two young boys can drag on you. We've started taking the Playstation and the portable DVD player...and that helps. It's still a very long week.

Logan is scheduled for his 5th round of 2-CdA at the beginning of Feb, and then an MRI at the end of Feb. If the MRI comes back clear, he will go on "Maintenance" therapy... lower doses of chemo over the next 6 months or so. Here's looking forward to a big party at the end of Feb!

Monday, 12/5/05

MRI results are in. They show a marked improvement from 2 months ago, with Logan's skull tumor about 40% smaller then Sept. While it's not the block-buster news we were hoping for (all gone!), it's a big step forward, and we're very happy.

Logan started his 3rd round of 2-CdA, so we'll be going downtown every day for the next 5 days. Logan has a 'port' in his chest to facilitate his chemo treatments and blood draws. He is 'accessed' (a needle is poked into his port through his skin) to get his chemo. Not as traumatic as an IV trying to get a vein, especially for a little guy. Before he is 'accessed,' we put a topical anesthetic (Emla cream) on his port about an hour ahead of time so he doesn't feel the poke of the access. Well, the last few months, he has learned that the Emla cream means pokes, prods, and hurts, and he really fights it. I really can't blame the little guy, though. He puts up with so much with so little fuss. He is our very brave trooper, and I couldn't be more proud.

Thursday, 12/1/05

Logan has his MRI later today. Pray for good news. We likely won't have results until Monday, my birthday. (I'll give you one guess as to what my birthday wish is.) Logan will start his third course of 2-CdA on Monday, barring any surprises on the MRI.

Logan had his pentamidine on 11/23. This is to prevent pneumonia, and he has it every month. At Texas Children's Hospital, however, they did it with an inhaler over 20 minutes as opposed to an infusion (what he's used to). That was just awful. I think it's the worst experience he's had through this whole process. He kicked, screamed, and was all around terrified. He was sweating and shaking from head to toe. I had to hold him in place while the nurse put the mask over his face. We'd take a break every 10 minutes or so when I was afraid he was going to really hurt himself in the struggle...and he would run off and hide in the corner. We won't do that again...next one will be infusion again. Who dreams up these tortures for kids??

All four of us were treated with anti-biotics for upper respiratory bugs.  We're all doing much better, though Donna and I still have a cough that will not go away. Logan has a tiny bit, but we're very glad we got him into the Doc when we did.

We're still surrounded by boxes, but we can function with the essentials. Moving just puts so many things into chaos! We all love our "new" house and neighborhood. The neighbors are great and Texans as a whole are extremely friendly and helpful. The boys have been to at least one of the many parks around us nearly everyday. Erik turned the big "5" this past Monday.

Thursday, 11/17/05

Sorry for the long delay...we've had our hands full lately. Since our last update, we've sold our Florida house, bought a house in Texas, and moved a family of four 1,200 miles. We're now Texans, living just west of Houston. We moved so Logan could be treated by Dr. McClain at Texas Children's Hospital. I'm now surrounded by boxes and life is still chaotic.

We're all fighting colds. Donna was first, over 4 weeks ago. I was next, on the drive over last week. Erik started a few days ago, and Logan just 2 days ago. We're looking for a doctor and a pediatrician right this minute. Ah, the joys of a new city.

Monday, 10/24/05

We're all doing well after the hurricane. Never lost power for more then a couple of seconds. We did have (and still have) lots of wind. The trees and shrubs got beat up, but the house and pool cage are fine. Only damage we've found so far has been one of the storage doors on our van. We evidently didn't have it locked, so it must have got banged around in the wind. It lost most of its rivets, so that will have to be repaired. Small price to pay. Could have been much worse.

Logan did wake up crying 3 hours before the eye-wall hit...just as the winds were too strong to drive. He threw-up, cried some more, then snuggled with Mom and went back to sleep. No fever, and he seems no worse for wear this afternoon. We had visions of an infection requiring hospitalization and antibiotics with no way to get to the hospital. Thankfully, we were spared that drama.

Sounds like Donna's sister and brother-in-law lost their pool cage, and their 28' boat is on it's side with the dock damaged. I'll go help them out later today when the winds die down.

Sunday, 10/23/05

Kind of quiet as we're between treatments. Logan has been doing well, though a bit more tired then usual. His appetite has been good, and he seems to tolerate everything pretty well.

All our hurricane shutters are up, prepared for hurricane Wilma. We call it our tin-can. Logan was supposed to start his second course of 2-CdA on Monday, but that's been postponed until Wednesday because of the storm. Just another hurricane season in Florida!

Saturday, 10/8/05

Dad enjoyed the Regional Information Meeting put on by the Histiocytosis Assoc. of America. Thanks to everyone who participated and organized the meeting. It was very informative, and great to meet all the other parents! Dr. McClain's PowerPoint presentation can be downloaded by clicking here. With the help of another family member, I hope to have a recording of the presentation, as well as the question/answer session soon.

Friday, 10/7/05

Dad's in California today. The Histiocytosis Assoc. of America is having a Regional Information Meeting for parents and interested parties in Palo Alto tomorrow. It's an update on the latest research regarding LCH (Logan's condition) and other similar diseases. I'm very excited to hear the latest that's going on. As always, I have a huge list of questions. I'm also looking forward to many other LCH parents that I've only talked to via email.

Erik has been fighting a cold for the past few days. Remarkably, no one else in the family has been affected. Speaking of which, Wednesday we all got our flu shots to try to protect Logan. It would be very dangerous for him to come down with the flu. Mom and Dad were not popular with the boys regarding flu shots...Erik was convinced we were punishing him for not eating his chicken nuggets at Burger King!

Saturday, 10/1/05

Logan finished his first course of 2-CdA today. So far it has gone fairly well. It definitely makes him tired, and he takes a 2-3 hour nap each day of treatment. His port site on his chest is very sore, with all the accesses and especially the tape being put on/taken off...He's very sensitive about that now.

Logan's blood counts were low when they checked on Wednesday, so they gave him gamma globulin on Thursday. That made for a 6 hour day at the hospital for Donna and the boys. Donna was so sick of seeing video games by the time they were done...I thought she was going to pitch the boy's Playstation!

Tuesday, 9/27/05

Logan had his first dose of 2-CdA today. It was a long day at the hospital...with all the preliminary requirements, blood tests, etc. followed by the 2 hour treatment. Logan's favorite nurse, Jennifer, was nice enough to give us a lunch pass, so Logan got to munch pizza while he played and got his treatment. He was happy for a while, since he got to play "Star Wars Bounty Hunter (Jango Fett)" on the Playstation 2 video game in the clinic. After the first 3 hours, though, he was getting tired and bored. I carried him out to the car after treatment, and he was asleep within 5 minutes. He slept for the next 2 hours...unusual for him to take a nap; but I can understand considering the circumstances.

As highlighted above, 2-CdA comes with it's own risks. The Doc informed us that we would be getting lots of blood tests (once or twice a week) to monitor his vitals. There's also a 50/50 chance that Logan will end up with a fever (anything over 100.4) that will automatically get him a 2+ day pass at the hospital with IV antibiotics. This chemo really knocks the bone marrow down, so all bone marrow products (white and red blood cells and platelets) are suppressed. White blood cells fight infections, red blood cells carry oxygen, and platelets act like "Band-Aids." So, concerns about infection, fatigue due to low oxygen levels, and worries about bleeding. Really, my plate is full. I've got enough to worry about. I could go for some good news again!

Speaking of which...the boys had a great time with Mom and Aunt Jayne at Busch Gardens and Chuck E. Cheese in Tampa. It was a quick, short trip, but we're very grateful the boys had a chance to have some fun before they'll be locked up for the next 5 months or so.

Thanks for checking in on Logan!

Saturday, 9/24/05

We're back from Houston, just before hurricane Rita was closing the airport and everyone was leaving town. It took us 4.5 hours to travel 30 miles to the airport. We made the trip with windows down and air conditioning off in 100 degree heat...we were afraid that we would run out of gas like many others. The plane was late leaving, but we were thankful to be back in Florida!

The MRI and CT didn't come back with good news. Logan's tumor persists, though it's about 10% smaller. It appears that Logan also has a lesion on his head again (cradle cap). Most LCH cases are resolved by week 6 or 12 of treatment. We are at week 18 and still have persistent disease. Dr. McClain suggested switching chemo drugs again; now to 2-CdA. Logan will have 4 courses of 5 straight days of chemo, followed by 3 weeks off. Each of the 5 days will be 2 hours of IV infusion at the hospital. 2-CdA is said to be harder on his immune system (meaning he's more susceptible to infection) and platelets, and more likely to cause headaches, fever and fatigue. Rarely it may cause potentially irreversible kidney and nerve damage. If it saves his life and reduces his chances for complications later in life, I guess that's the chance we take.

On the bright side, Logan is in good spirits and acts like a normal 2 year old. He has asked to fly back to Texas so he could go to Chuck E. Cheese again. He and his brother Erik closed Chuck E. Cheese two nights in a row while we were in Houston for scans. Instead, Mom and Aunt Jayne have taken the boys to Busch Gardens in Tampa this weekend. Since Logan will likely start the 2-CdA treatment next week or the week after, his immune system will be suppressed for at least the next 5 months. This will be his last chance to go out and have some fun for a long time. We thought we were hermits now! We'll really have to watch Logan's exposure once that treatment starts. By the way, Tampa has a Chuck E. Cheese!

Tuesday, 9/13/05

Blood tests showed Logan was strong enough for his Vinblastine chemo treatment last Friday. He's back on Prednisone for 5 days, so his appetite has been much better lately. His favorite activity: swimming. That's something he can do in his back yard and we don't have to worry about him being exposed to other children. He and Erik are both fish, and they'll swim for hours on end.

Erik is fighting a cold, and Logan, Donna, and myself all have a touch of something, too.

Monday the 19th Logan is scheduled to have a CT and an MRI. He will have these done at Texas Children's Hospital in Houston. If he then needs a biopsy, he'll be right there where it can be done. Keep your fingers crossed and your prayers strong.

Sunday, 9/4/05

Very quick entry...We're all home from our 3rd of 3 Methotrexate treatments. These require a hospital stay of at least 2 days. Logan did very well, though each one takes a little more out of him. He's been very tired, low appetite, and some nausea. Otherwise, he's been in good spirits and is very happy to be home again, as are we!

Blood tests in a week, and then scans the week after or so.

Saturday, 8/27/05

I took Logan in for his blood-tests yesterday, and it showed his ANC number was down to 228, the lowest ever. An ANC of 500 is considered "Extreme risk" for infection. We try hard to limit his exposure to crowds and other people, especially if they've been sick. Logan goes in for his 3rd of 3 doses of Methotrexate in another 6 days, as long as his ANC is above 500.

As I've said a number of times before, if you didn't know any better, you'd think Logan is a normal 2 year old. We notice no difference between his development and Erik's at this age. He runs, plays, talks and gives orders (!!) just like you would expect from a 2 year old. It's amazing to me that so much can be going on inside a little body (LCH, chemo), and there's no outward appearance. I'm glad we found the LCH as early as we did, because it would be very easy to miss. We'll have to be extra vigilant in the future. Anything out of the ordinary with Logan makes us wonder if it's LCH or effects from the chemo.

I used to find great peace watching the boys sleep. From the time they were first born, I'd get up in the middle of the night, watch them sleep and listen to them breathing. Once I heard them breathing, I knew they were OK. After this experience with Logan, I'm not so sure. Now I see their little faces sleeping and I wonder what terrible things might be growing in their bodies that I can't even see. Not a comforting thought.

Tuesday, 8/23/05

Logan is doing well, and seems to have no ill effects from treatment this time. We came home Sunday night, and are very glad to be home again. Logan did great, but got restless being in the hospital for 2.5 days. The hospital and staff are very nice, and the ward only has 8 beds for the pediatric-oncology patients, so they get great attention. They have lots of toys, games, and videos for distractions, but little boys are anxious to get back to their familiar surroundings.

Friday night it was just Dad and Logan. We kept Mom home because she was running a fever of 103, and we wanted to keep her away from Logan just in case. The fever disappeared; we think it might have just been an ear infection. Anyway, Logan was really missing Mom and Erik, so they joined us Saturday morning after they dropped their cousin off at the airport. Thanks for visiting, Matthew!

Logan's ANC was up to 989 when we started treatment, almost in the normal range. After chemo treatment, his blood showed an ANC of 3,186...in the middle of the normal range! It hasn't been that high since before he started all treatment in April! Usually chemo makes it go way down. Doc thinks it might be from the steroids. We're scheduled for blood-work again on Friday.

One more treatment in two weeks, and then in for scans again. That will be a scary time, since all future treatment depends on those scans.

Wednesday, 8/17/05

Logan's mouth sores are essentially gone. His energy level is back up, though not quite 100% Ask Erik, and he will tell you "Logan goes back into the hospital on Friday for a double-dose of Vinblastine and Methotrexate, as long as his ANC has risen above 500." It's sad that a 4 year old can tell you that, and understand what it means.

Logan will be in until at least Sunday. Naturally, we're a little concerned, since his ANC was about 1,400 before Methotrexate last week, and it dropped to 300. Now we're starting low, and giving him both Methotrexate and Vinblastine. I'm sure he'll do great. As always, he never complains.

He's my hero.

Friday, 8/12/05

Logan has an additional sore in his mouth...somewhat expected from the Methotrexate. He's still tired in the afternoon, but it does seem to be getting better. This morning he took his iron pill and water on an empty stomach, as suggested, and then threw it all back up within the hour. He ate his breakfast after that, and has had no ill effects since. Maybe an isolated incident.

Logan had no chemo this week, but did have to go in for blood tests today. His ANC (a measure of his resistance to infection) came back very low at 300. Normal is 1,000 to 5,000. Before Logan started chemo, his ANC was 3,657. Anything below 500 puts him at "extreme risk" for infection. We all avoid crowds and playing with other kids, which is disappointing since they don't play with their friends anymore. However, it's short term and far better then the alternative. Any fever over 100.4 sends Logan to the hospital for a minimum of 2 days. We make the best of it, though, and are very glad to have the pool.

Logan's other vaccinations seem to be fine so far. The doc's are checking the major ones to see if Logan has resistance, and so far-so good.

Monday, 8/8/05

Logan was released from the hospital last night. We're glad to be home. He's been taking long naps in the late afternoon (he had stopped taking naps a few months ago), and is still ready for bed at his normal bedtime, so this chemo has taken a lot out of him. He has a sore inside his mouth, and his hair continues to thin. Otherwise, he's playing well and is in good spirits.

The boys were super in the hospital. Erik was mesmerized by his Star Wars Lego's PS2 game, and Logan would join in from time to time, though he hasn't mastered the controls like his 4 year old brother. The hospital has a number of other distractions for kids, with a play room, movies, and a good collection of games and crafts.

Dr. Salman informed us that Logan hasn't developed resistance to Chicken Pox. For whatever reason, his vaccination didn't "take." Bad batch of drugs? Malfunctioning immune system? Who knows...but the bottom line is that Logan is at risk, and that it's potentially life threatening with a compromised immune system. He can't be re-vaccinated until a year after chemo stops. We wonder now about all his other vaccinations.

Saturday, 8/6/05

Logan was admitted to the hospital and started his IV chemo yesterday. He is a true trooper. No complaints at all. Erik insisted on accompanying his brother to the hospital. He wanted to make sure he was there "to help my brother fight the germs. I'm part of the Chemo-Crusader team!"

The photo is of the boys as they were walking across the parking lot to the hospital Friday morning. They each have backpacks packed with toys, snacks, and their new PS2 game controllers and "Star Wars Lego" game.

The boys played well yesterday, and kept themselves entertained. Logan is a bit limited in his movement, being tied to a 6 foot IV cart with a tiny plastic tube that gets tangled in everything. I can't believe someone hasn't figured out a better way to deliver drugs IV.

Neither of the boys is eating very well...especially Logan. I don't know if it's the change of environment, being 2 years old, or the phase of the moon. Of course, it could be that he's just parroting his older brother/role model. When Erik crosses his arms and says, "I'm not eating that <insert any food you suggest, even their favorite food>! I hate that," Logan quickly mimics both action and words, down to the same facial expressions. It's as comical as it is frustrating!

Friday, 8/5/05

"Thanks Again!" to whoever sent Logan another "Angels for Hope." It's beautiful, but came without a card or note.

Just a quick note...we're on our way to the hospital. Logan's scans show no change from the 6 week mark. A healthy debate went on among the Doc's, and Logan's treatment is now changed to 3 doses of IV Methotrexate spread out over 6 weeks, plus his Vinblastine and Prednisone every 3 weeks. The IV treatment means 48 hours minimum in the hospital. Rescan in 6 weeks.  If all clear, then he will continue the Vinblastine, Prednisone, and add a lower dose of Methotrexate and include 6-MP for the balance of 12 months. It's sad that I can state all that from memory, and not even look up spellings. I feel sorry for any parent that has to witness a child's illness and treatment...and even more sorry for the child.

I just can't put into words how empty and sad I feel. Every time I look at Logan's smiling little face, I wonder what all these drugs are doing to his body, and what the long term effects will be on him. If any of you have the power to work on this disease, in any facet from filing papers to doing research, we encourage you to do so and we thank you with all our heart. I know Donna and I will both be working on LCH until it's a footnote in the medical books.

Monday, 7/25/05

First, a big "Thank You!" to whoever sent us an "Angels for Hope." It's beautiful, but came without a card or note.

Sorry for the delays in updates, it's been very busy lately. Don took a quick trip back to MI to pay respects to his Uncle Jack at his memorial service, so Donna was home with the boys alone for a few days. Then we all just returned from our annual Johnson Family Reunion in Traverse City, MI. Because of treatment and the MRI, Donna and Logan were only able to attend for a few days, but it was great for the boys to play with their cousins, aunts and uncles. They get to see them far too infrequently.

Logan had his 12 of 12 chemo treatment on 7/19, along with his MRI. We were expecting great news...that the tumor was all gone. We were not prepared to hear, "No Change." We were floored, and are still in disbelief. We are scrambling at the moment, and are going in for a meeting with the doctor today. He originally recommended Logan go on "Maintenance," or chemo every 3 weeks instead of weekly. This makes no sense to us. If weekly treatments resulted in "No Change," how would treatment 3 times LESS frequently improve things? He has also suggested a CT Scan on Thursday. Dr. McClain had suggested that if the tumor were not 10% or less (if no change, then we're still at 40%), that he would add 2 additional chemo drugs. Unfortunately, Dr. McClain is unavailable for the next 3 weeks.

Tuesday, 7/5/05

Treatment number 10 of 12 today. Logan did excellent as always. His weight was stable this week. His appetite is slightly better then it has been for the past couple weeks. White Blood Count (WBC), however, is critically low at 1.7 (normal range is 6 to 15). At the moment, he shows no ill effects. We will be very happy when scans come back and say "No Active Disease," and we can eventually quit pumping chemo into the little guy. He is our trooper!

Friday, 7/1/05

Another week of treatment (that was number 9 of 12) went by without much incident. Logan continues to do well, with no apparent ill effects. His appetite has waned for the past few weeks, and this last visit to the clinic showed he lost 2 lbs. in a week. This is the first loss he has had, and gives us some concern. To be honest, about anything out of the ordinary concerns us. We'll roll with it and see what the next few weeks bring. The latest blood tests show some good news: Logan's ferritin (an iron measure) is back in the "normal" range. The platelet's, however, went back to an elevated level. We had heard that platelet's could be used as a rough measure of active disease...don't know the truth in that. It has been high since Logan was first diagnosed, and kept creeping higher. 2 weeks ago it dropped to the normal range. Now it's right back up to where it was. I wonder if 2 weeks ago was just an "anomaly."

Donna is back home after a quick trip to Michigan for a funeral, and to visit her Mom. It was just the three boys at home, and we had picnic's on the living room floor while it rained every day. Logan's latest incision finally healed, so we could all go swimming again...very handy to burn off energy of 2 little boys. I didn't have any trouble getting Logan to go to sleep! We're all very happy to have Mom back home!

Dr. McClain suggested only an MRI for Logan's 12 week follow-up, as opposed to an MRI, CT, and Bone Scan. He stated that the soft tissue seen by the MRI was of most importance. The CT is for bone, and we already know that it is healing, so there's not much new information to be gained. CT will be useful again at the end of treatment. That means Logan will only have to be under anesthetic 1 day instead of 2. His MRI is scheduled for 7/19. We look forward to that day, and to hear that there is No Active Disease!

Tuesday, 6/21/05

Dr. McClain gave us a follow-up call after he reviewed all scans with his radiologist. He reiterated that the tumor was definitely smaller, and that we should continue our current treatment plan. As they read the scans, the tumor never entered the brain cavity, but did press against the lining of the brain (the Dura). The bones of the skull have already begun to grow back! All GREAT News to us! He also stated that his radiologist was able to pick up the Pineal Cyst on our original CT scans even before treatment started, so it looks like something that has been there for quite some time. They measured it at 1.2 cm vs. the 4 mm (3 times as large) that we were originally told. He is not overly concerned about this at the moment. He states that Dr. Grois' research pointed out that these cysts do appear in a higher frequency of LCH patients, but the significance is unknown.

Friday, 6/17/05

First, a Big "Thanks!" to all of you who have written, called, emailed, and donated! I'm sorry I haven't responded to all of you personally, yet. We've been completely overwhelmed by all that is going on.

Back from Texas Children's Hospital and our visit with Dr. McClain. It was a very educational trip, and Dr. McClain spent a great deal of time answering questions for us. He wasn't able to review all Logan's scans while we were there; but promised to review them with his radiologist next week and then follow-up with us.

It is clear that Dr. McClain is very aware of studies and literature about LCH. Every article, every person, and every study that we had questions about, Dr. McClain knew about it and could talk at length. Two major concerns we had were recurrence rates for LCH (chance of coming back after we "cure" it with this treatment), and later Central Nervous System (brain) involvement for Logan. According to Dr. McClain, the best estimate for recurrence is 40%, which is what we have read. Estimates for later Central Nervous System (brain) involvement for Logan were much higher then we expected: Dr. McClain estimated a 20%-50% chance of later CNS involvement. A very sobering statistic. That being said, Donna and I have no plans of Logan becoming a "statistic." Our search for our family's role in LCH continues. A big part of that role is to show other LCH families that you can educate yourself, make good choices, and hold your child up as one who beat the disease...something that their kids can do, too.

From what Dr. McClain reviewed of Logan's scans, he agreed that the tumor is definitely smaller, and recommended a course of weekly chemo (Vinblastine) and 3 days on/4 days off of Prednisone. Our current Hem-Onc, Dr. Salman, discussed this with Dr. McClain, and that is Logan's current plan. All new scans in 6 weeks. Dr. McClain stated that mastoid tumor's (like Logan's) are especially difficult to conquer, and if the tumor were not down to 10% of the original size in another 6 weeks, he would consider adding other chemo drugs to the treatment plan.

Dr. McClain also said that there is definitely some link between LCH and family thyroid disease, and that Pineal Gland changes/cysts are more prevalent in LCH patients, though the significance is unclear. He also has a hypothesis about family auto-immune disease (like Lupus, and even rheumatoid arthritis) and LCH. Both my sister and Donna's 2nd cousin have Lupus. Donna's family has thyroid disease, and I'm on synthetic thyroid since my thyroid failed after radiation treatment for Hodgkin's Disease 26 years ago. My Mother's whole side of the family suffered rheumatoid arthritis. All coincidence??

Monday, 6/13/05

Results from bone scan and CT scan were presented today. They also show good news. So good, in fact, that the Doc has put Logan on "Maintenance" instead of Phase II therapy. In other words, chemo and radiation every 3 weeks instead of every week. While this is exciting, with the rate of recurrence, Donna and I are both uncomfortable with this plan. Scan's still show the tumor present, just 60% smaller. We realize it's a balancing act between treating the disease and minimizing future side effects, we would just feel a lot better if scans showed No Active Disease before going on Maintenance. We look forward to Dr. McClain's review of Logan's case on Wednesday in Texas. We're packing now.

Also, thanks to the parent network with LCH (Thanks Rose!), we have a number of articles regarding Pineal Cysts and LCH. Its unclear if they are related. Dr. Grois says that we are going to the right guy (Dr. McClain) to have this case reviewed, since he has particular interest in cases which involve the brain. We have great hopes for Texas!

Friday, 6/10/05

Logan had his bone scan and CT scan done today, in spite of the fiasco at the hospital. I really wonder about the health care system at times. Now we wait for results, probably Monday. Monday also means the start of phase II of therapy, with another 6 weeks of chemo (Vinblastine) and prednisone. Logan also gets the debris from all the ear surgeries cleaned from his left ear canal. He will have a challenging day.

Tuesday, 6/7/05

Doc's office just called and said the MRI of Logan's brain, done yesterday, shows "Marked Improvement" from the initial scan. That means the tumor has gotten much smaller. The scan also shows a Pineal Cyst which was not in the initial scan. The Doc feels that this cyst is not related to LCH and was too small to be seen in the initial scan. He suggests observation during our normal rescans for this cyst.

Monday, 6/6/05

Logan is doing well. If you didn't know any better, you'd think he was a normal 2 year old. His face is swollen, he's a little moody, and tends to be more aggressive with biting and hitting. The doc's chalk it up to the prednisone. His appetite was quite strong for a while (midnight cheeseburger, please), but has returned to normal 2 year old ambivalence. 

Friday, June 3 was to be a big day for us. Logan was to have his final dose of chemo in the initial 6 week treatment plan. Unfortunately, we had another road block. A "port" was installed in his chest 6 weeks ago to aid in chemotherapy. It "flipped," so that the 'access' side was pointing into his chest...thus, no way to draw blood or give chemo. An exceedingly rare occurrence, we are told. LCH is extremely rare, ports flipping are extremely rare...Donna and I have decided to give Logan $1 and let him play the lotto!

So, Monday, June 6th we were back in Outpatient Surgery to have the port flipped back. Dr. Salman's office also arranged to have one of his scans done while he was under anesthetic, which saves him from being under 3 times this week. Great! Logan is scheduled to have a bone scan and CT scan on Friday. He's also being weaned off his prednisone.

His initial 6 week treatment plan is coming to a close. He now gets re-evaluated. What happens next depends on the results of the scans.

  1. No Active Disease: Logan will go to "maintenance." Chemo and steroids, just not as often. He'll stay on this for about 20 weeks.
  2. Improved: Another 6 weeks of steroids and weekly chemo. Re-evaluate in 6 weeks.
  3. No improvement or condition worse: A much more aggressive treatment will have to implemented.

We are flying to Houston next week to get a second opinion from Dr. Ken McClain at Texas Children's Hospital. Since LCH is such a rare disease, there are few experts in the medical field. Dr. McClain's office sees 30 new Histiocytosis patients a year, about the highest in the country.

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