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Friday, 6/20/08

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

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

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

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

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

Tuesday, 4/22/08

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

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

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

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

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

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

Thursday, 4/10/08

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

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

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

More History Can Be Found in the Journal

Summary of Major Events

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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