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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......











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

Saturday, September 14, 2013 1:10 AM CDT


One last share.. I can not tell you how excited we are for tomorrow! The support has been absolutely astounding! I love you all so very much for sharing and supporting this ride. Chris has nooooo idea how many people are cheering him on! He really does think its like a birthday party. To John and Kathryn, I don't have words to express all the love we have for you. You truly are angels! To my co workers (friends) who have been so supportive and are volunteering tomorrow, thank you sooo very much. To all the riders coming out tomorrow, drive safe and thank you all sooo much! xoxoxxo


http://www.waterloochronicle.ca/community/chris-crusade/

Tracy

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Links:

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


 
 

E-mail Author: teckhardt@live.ca

 
 

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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.
 
 
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