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| Histiocytosis Information |
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| Welcome to my website. Here I can share my LCH story and pictures with my friends. |
Our journey through treatment of LCH.
We hope this site is as inspirational to you and your family as it has been to ours to both experience and to build. Thank you all who have taken the time to email your stories and encouragement. You are invited to join our histio support group by clicking here
Marty & Beth Sellers
Contact Us
"These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world." - John 16:33
All watermarked images on this site courtesy and copyright
Saint Portrait Designers, Huntsville, Alabama.
December 2003 - Getting Diagnosed
This is the story of our 4-year-old Emily's "bad knot" that was found just above her right ear in the bone of her skull a week before her fourth birthday in December of 2003. She complained that it hurt to touch there when doing her hair but we figured it was a lymph node swollen since she had a couple of ear infections and was being treated for a sinus infection that wouldn't clear. Our pediatrician ordered a routine skull CT to see what was going on with the ears and sinuses. The pediatric radiologist noticed the eosinophilic granuloma (EG) that had eroded through the bone of the skull and was resting against the covering of her brain. They called with the news at 7:30am and needed an MRI to further verify their suspicions. They had a machine already lined up for us when we got there two hours later which is a miracle in itself since there is typically several days waiting. While it helps to have connections, God continued to bless us with a pediatric anesthesiologist who came in on his day off to sedate her for the test. The MRI further confirmed the doctors suspicions but it could only be verified with a biopsy. A few days later, she had surgery at Children's Hospital in Birmingham where the growth was removed intact and in it's entirety before Christmas. Biopsy did confirm that it was LCH, the modern name for EG. Living only 2 hours from Nashville's Vanderbilt Children's Hospital, we elected to see Dr. Whitlock, an LCH specialist there on January 12.
January 12, 2004: Meeting Dr. Whitlock.
Although it came as no surprise, we were disappointed to hear the doctor today at Vandy recommend 6 months of chemo for Emily to decrease the likelihood of her LC histiocytosis recurring or causing diabetes insipidus later. Six weeks of weekly chemo followed by 6 months of monthly treatments, all in Nashville. Some of the medications will be administered by mouth but the stronger stuff is given by IV. To eliminate the need to stick her for each treatment, we will likely elect to have a portacath installed in her chest where the medications can be administered each time. This will be done in outpatient surgery, reduces the risks and pain associated with weekly and monthly IV's and will be removed a few weeks after she recovers from her last treatment. Please keep us in your thoughts and prayers as we continue to learn about this process and begin regular trips to Nashville. Again, we consider ourselves so blessed to have caught her disease early and to have access to one of the top specialists in the country within driving distance at Vanderbilt. There were 4 other kids in the waiting room there today with the same thing but in more serious condition, all having multi-system involvement, multi-site tumors and 3 of them had developed diabetes insipidus. The fact that hers was limited to one site, was completely removed and she has no other symptoms gives us great hope that a round of chemo will prevent any future problems.
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Jan 20, 2004
Emily's Port-a-cath placement at Vanderbilt went fine. It was done in one-day surgery and they were wonderful to all of us. Max the puppet came to see her and accompanied her to have a CT afterward, saving us from having to go back to Nashville the following Friday just for the CT. She's doing great and hasn't complained about the port at all. We start chemo Monday Feb 2.
February 4, 2004
Emily had her first chemo treatment Monday 2/2 and did really well. The doctor says that she probably won't be sick or lose her hair. It only takes a few minutes for them to administer the vinblastine into her port. She was tired afterwards, just laid around watching TV when we got home and ran a 102 fever before bedtime. She got up Tuesday and felt okay and wanted to go to daycare. The hardest part is the prednisone tablets 3 times a day which is proving a challenge. We are still experimenting with various methods of disguise to help her get it down.
February 14, 2004 - Happy Valentine's
Emily isn't feeling as well now after a couple of weeks of steroids and chemo. She's gaining weight, eating about 5 meals a day and has no energy to burn off what she's consuming. She complains that her tummy hurts some but she hasn't been sick to her stomach.
A local Madison Drugs pharmacist helped a lot by compounding a chocolate minty liquid prednisone that she has a much easier time with than the tablets.
March 8, 2004
Emily finished her last weekly chemo treatment today and has been tapering off of the daily oral steroids for a week now. The chemo treatments have not been as difficult as we imagined, she tolerates them well, hasn't been sick or lost any appreciable hair. She's tired on the treatment days mostly due to the trip to Nashville and Thursday nights seem to have been her low point after the treatments when she didn't sleep as well and was sluggish Friday mornings. We have next week off from treatment but will have a CT and MRI to make sure we haven't missed anything. If all that looks fine, we will begin a course of maintenance chemo which will be a treatment once every three weeks accompanied by 5 days of oral steroids. That pattern will continue to around Aug. 1. Thanks again for all the notes, meals, thoughts and prayers.
March 22, 2004
Emily had a good checkup today. The CT scan and bone scan was done last week without incident and all indications are that she is disease-free with no new lesions. Labs are all normal considering she just finished 6 weeks of chemo and there is no sign of diabetes insipidus, one of the possible effects of her LC hystiocytosis. Her hair is beginning to get a little thinner on top from the vinblastine agent. The folks at Vanderbilt have been wonderful and we've learned a lot from the parents we've met there. Now that we've been through the surgery and chemo, as we meet new patients and parents, we hope to be as helpful to them as others have been to us. Starting next Monday, we will finish the maintenance chemo by having a treatment every 3 weeks until August. Each treatment is also accompanied by 5 days of oral steroid (prednisone) which has caused her to eat everything in the pantry. She's gained about 6lbs in the last 6 weeks which doesn't sound like much but is 16% of her starting weight which would be like an adult gaining 25lbs.
May 1, 2004
Emily has now completed two of her "maintenance" chemo treatments at Vanderbilt. These treatments are the same as the first 6 weekly treatments, a dose of vinblastine administered through her PortaCath followed by 5 days of prednisone. Since these are only every three weeks, the puffy steroid face is beginning to go down although she's not lost much of the weight. Although no one else would likely notice, she does have some thinning of her hair. It's noticeable to us, especially when it's wet. Maybe because these treatments are so far apart, she doesn't have a down day 72 hours (was Thursday after a Monday treatment) after her treatment. They don't seem to have any effect on her now. She's tired on Monday night after the trip but otherwise she feels fine and still loves going to clinic at Vanderbilt. The nurses there put her to work helping stock the rooms and getting supplies organized. She loves being a helper and they are special to us for making her feel so special.
Aug. 2, 2004 - Last Chemo Treatment Today
Emily's last treatment was today and went very well. Afterwards, we took her to The Aquarium, an incredible restaurant at Opry Mills. The entire dining room is built around a 200,000-gallon saltwater aquarium with 1000 fish from over 100 types including various sharks and rays. She loved it. We have post-treatment scans in 3 weeks, a checkup in 4 weeks and then they will discuss removing her chemo port. Although there is a 20-30% chance of this coming back, it's not like other diseases like leukemia where a recurrence is much harder to treat. Research shows that recurrences respond well to the same course of action as the first treatment. Her immune system will continue to be depressed for another 90 days or so, concerning us a little as she starts pre-K this week. She'll need to avoid sick kids and chickenpox until her immune system builds back up somewhat.
We met some of the first Vanderbilt LCH patients at clinic today. Twin boys, they were in for a checkup. They are 10 now, going into the 4th grade. They were diagnosed years ago when not much was understood about this disease and were seriously ill on several occasions until a certain combination of chemo and steroids had immediate results. Fortunately, God is still in the healing business. His miracles today might involve Blue Cross and a co-pay but they are still miracles to us and no less powerful than a spontaneous, non-consuming brush fire in Moses' time. We could not be happier with the treatment and results we've had with Vanderbilt Children's Hospital.
Aug 22 - Our Chattanooga Trip
We went to Chattanooga for a few days and stayed in a train car at the Chattanooga ChooChoo Holiday Inn hotel. We rode a train with a real steam engine, went to the aquarium, went to the children's hands-on discovery museum, and got to see four of my cousins who met us there.
August 30: Tests are Clear
Praise God from Whom All Blessings Flow
Emily's CT and bone scan today showed no signs of any other LCH lesions. God has elected to demonstrate His power, sovereignty, majesty, mercy and grace all at the same time. We may never know in this lifetime why this happened but we trust God had a reason. We can already attest to how it has brought us closer to each other, to our families, to our friends and to our church family. There is a sizeable chance this will recur at some point in her life but we continue to pray for God's hand on Emily and His work in our lives. We are scheduled to have the portacath removed from her chest October 11. In the meantime, she is excited about going to pre-K every day this Fall. The only trouble she endures daily is little brother Wesley.
Oct. 11 - Portacath Removal
Emily's surgery to have the port removed from her chest went perfectly. Again, the folks at Vanderbilt Children's were wonderful. They made sure she had toys, crayons, books, her blanket and Scrapps (stuffed dog) got to go back with her. She picked bubble gum gas to be put under with and they started her IV after she was under so she didn't have to see or feel it. Max the puppet (thank you Jenny from Child Life Services) came by for a visit again. Max has internal organs, tonsils, etc. all velcroed in to explain to children what is about to happen in surgery. Emily got to bring her port home and took it to school the following day for show and tell. We will have a surgical checkup in a couple of weeks and an oncology checkup Dec. 20 on her birthday. We're planning to make a big day of it, taking cake to the clinic for patients and staff. We'll have repeat scans in February. This blessing is hard to comprehend and even harder to explain. We are so rich - we have it all.
Oct 30 - Halloween Party
Dec. 11, 2004 - Emily and Hannah Have a Party
To celebrate their 5th birthdays, Emily and her best friend Hannah had a party together but they decided they didn't want a lot of presents, they wanted Dr. Whitlock to have the present money to help other kids with LCH. While they received ample presents from family, we asked friends to bring a donation to Vanderbilt LCH research and over $500 was raised to help continue the investigative studies into LCH treatment.
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Dec. 20 - Emily's Birthday & Checkup
Emily's checkup today went fine. She was excited about not having to have blood drawn on her birthday. The only thing she has regretted about having her port removed is that now she would have to be stuck in her arm when something is needed. We will have scans in February 2005 and a follow-up visit after those. It's been one year since she was diagnosed. She's had 3 surgeries and a dozen chemo treatments and you would never know. She's happier and brighter than ever, the joy of our lives. Happy Holidays to everyone. We've received a very special gift this year and thank God for it.
Created on 02/04/2003 10:24 AM by install
Updated on 01/12/2014 09:08 PM by admin
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