Christopher's LCH Story

Welcome to Christopher's Web page. Christopher has been diagnosed with a rare blood disorder called Langerhans Cell Histiocytosis.




Please sign our guest book to let us know you have been here!



Christopher was stitched a Quilt of Love, You can view it HERE
A special Thank you to the angels at Quilt of Love. You have brought many smiles and tears already.



Christopher also has a "Smile Quilt". You can view it HERE A very special thank you to all of you for making such a beautiful quilt. Christopher really likes the Shania music

Christopher belongs to a site called Share The Love. Here you can find many children and adults suffering through illness and in need of prayers and/or encouraging messages in their guestbook. If you have the time, stop on by and see if you can help brighten another family's day.





Click here for more info on Langerhans Cell Histiocytosis or other Histio related diseases like HLH/FHL and JXG. There is a family web site list on the library site where you can read about other children who are fighting this disease.




Some intersting facts, Christopher has had 41 ct scans, 6 MRI'S,2 open lung biopsy,2 biopsy's of his head, one bone marrow biopsy,4 sweat chloride tests,46 chest xrays,6 bone scans,3 skeletal surveys, 3 port surgerys, 2 dental surgery, oxygen and carbon dioxide test, upper and lower GI tract xrays,3 ultrasounds,0ver 500 cbc's,91 full blood work tests, 18 port cultures,17 inpatient antibiotic admissions, 5vzig shots for exposure for chicken pox,50 in-hospital chemo, 634 days of home chemo, over 57 IV starts, over 150 port access's, 39 general anesthetic's, three sedations,2 ambulance rides, 10 Pulmonary function tests and over 500 venetlion treatments and counting......









Check Out all my Friends that came out for Movie Night! Thank you all so very much!

Thanks to Jamie for designing this ribbon! Click Here to visit Jamie's site


CLICK HERE to purchase a LCH LAPEL PIN or bracelet. The proceeds from these supports research so a cure can be found!

Here is a list of Christopher's Medications. I had to compile the list for an upcoming trip to the eye doctor and was quite astonished, figured I'd share....


Antibiotics
Septra(sulfamethoxazole trimthoprim) - 10 ml three times a week
tobramycin (iv doses over three days for fever neutropenia, port infections)
zithromax(generalized infections, chest infections, strep etc.)
bactroban muporcin oinment 2% as required for incision infection
Fucithalmic viscous eyedrops (cysts or infected tear duct June 2005)

Topical Creams
protopic
hydrocortisone
emla numbing patches

Pain and Anti Nausea
Zofran(odanansetron HCL dihyrate) (3.75 ml as required)
Gravol(as required for antinausea prior to chemo)
Codeine (12 mg every 4 hours for pain as required)

Mouth Rinses
HSC mouthwashfor pain
Sodium bicarbonate mouth rinse0.22%
Nyastatin

Inhalers
Ventolin inhaler as required
flovent 125mcg (2 puffs twice daily)
advair (salmeterol xinatoate fluticasone propionate) 125/25mcg (2 puffs twice daily)
Singulair 4ml (one tablet daily)
prednisone 3 tablets daily

Chemotherapy
purinethol(mercaptopurine-6MP) 1/2 tablet daily
methotrexate 2.5mg (5 tablets every Wednesday evening)
Vinblastine 4.4ML IV push once every three weeks
Intermediate dose IV Methotrexate May 2005-June 2005
2CDA (clarabine) 2 hour infusions for five consecutive days once a month (June, July and August 2005)
prednisone 5mg (6 tablets daily for five days with Viblastine)
heparin for port flush

Other over the counter
Senokot 10mls daily
Lactulose 20 ml daily
calcium suppliment
potassium suppliment
tylenol as required for fever and/or pain

Journal

Monday, July 16, 2007 10:31 PM CDT

Yeah I know its been a long time. No News is no news. It's neither good news or bad. There is some residual disease and issues that still require regular visits to the hospital. He has lesions on his skull that are very stubborn and are causing some pain. His lungs are surprisingly well and in my opinion have gotten better. His lung functions haven't improved but he has been taken off one of his inhalers and is doing well breathing wise. His bladder is thickened for some unknown reason and we are awaiting our referal to a urologist. His weight continues to be a huge problem for us he just is too active or has some digestive problems. Again, something we are watching. I want to take this opportunity to say thanks to the people who continue to keep checking this site. I have been going through some major personal changes and haven't had the time to sit on here and update. For those of you who may not know, my husband and I have spilt up and we have sold our home and the kids and I have moved into a new place. They seem to be handling things well and are adjusting. To those of you who have heard stories as to why please keep in mind that the people telling the stories haven't been around in years so they might be fabricating a lot of the facts! If you want to know whats going on feel free to email off here and I will tell you the whys. Whatever the drama, it sucks all the way around. There is nothing worse than watching your life spiral out of control knowing full well the struggles were for nothing. I suppose its for the best. Thanks again for checking in on us. Tracy

Links:

http://www.histio.org  
http://www.makeawish.ca  
http://www.sickkids.on.ca  

E-mail Author: teckhardt@sympatico.ca

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 61363 times.

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.