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

Wednesday, December 3, 2008 11:09 AM CST

I know its been a while since I last updated. I find myself trying to avoid this page at times. It serves as a reminder to what we have already been through and in a weird way, my brain says if I don't update it, the current things aren't going on. Sadly I would like to say things are going well for Chris but that really isn't the truth, although in the grand scheme of things I am quite happy with his progress. He is suffering from chemo related side effects these days that do not seem to improve. He now has an IEP in school and has definate diagnosed reading and math disabilities as well as processing issues and a possible hearing issue. They learning disabilities are very difficult to manage. I find it a delicate balance of being on top of it to it not really mattering in the grand scheme of things. The older he gets, the more I realize how shafted out of normal childhood he was. I can't get a professional to tell me that the lack of schooling in JK/SK and grade 1 is part of his inability to read. I think it is. I think he missed the important building blocks a person requires to learn the skills they need to read. He has made some great imporvements in the first term of school this year. We are so very fortunate that we have such a dedicated school that has stopped at nothing to make sure Chris has all the tools he needs to succeed.
On the breathing side of things, he is doing well. We are still going to the hospital frequently for PFT's and to be followed by the lung team. They do not suspect any active disease at this time but will not rule out that it still may be there. He is still on a host of breathing meds and is slowing down considerably these days when he is running or swimming. This is to be expected I have been told as the fibrosis in his lungs will eventually slow down the lungs ability to pump. The meds we are on seem to be keeping the fibroisis from getting worse.. Too bad there isn't a drug being formutaled to reduce the fibrosis!
On the boney lesions he has on his skull, they have not improved or gotten worse. He at one point had frequently complained of headaches but that has leveled off so the doctor has said it is classed as stable disease. They still do a MRI once a year to make sure everything is fine or as required if they feel that something has gotten worse.
Three weeks ago Christopher had to undergo growth hormone testing. Thankfully the results came in as "within the normal range" I am very very relieved about that. They suspected that either the chemo or the disease had affected his growth hormone levels! Thankfully he was spared from daily needles and all that entails! :) We still have to see the endocrine team frequently because he is growing sooo slowly that they need to make sure he doesn't fall off the growth charts. He is such a picky eater these days and is so full of energy, its hard for him to have a surplus of calories to pack on the weight. I'm sure that time will fix this one.
Julia is growing up so quickly! She is in grade five this year and simply an amazing young lady. She took a lead role in a school play last spring and totally stole the show! She took a babysitting course this fall..Hard to believe that she is soon old enough to start babysitting! She is thrilled beyond belief about it..hehehe I'm not so sure I am..
The kids and I moved into a new townhouse in April after being evicted after 7 months at my old place. The owner of that place decided she wanted to move back in and it ended up going to court. As much as i enjoyed the experience of attending a rental tribunal (thats what I went to college for) I hope no one ever has to go through the stress of moving in four days and preparing for court. That was just crazy! However, we are settled into our new home and can't be happier about it.
The kids are getting excited for Christmas. Their lists are super long this year but funny enough, everything on their lists are for someone else.. Sometimes I'm soo proud! :O)
My divorce is nasty as all can be these days, seems my ex has a girlfriend (surprise surprise) and has failed to pay child support regulary or any expense for the kids or come to a single hopsital appoinment and most recently has decided he is going to file for bankruptcy thus leaving me with the loan for the trailer on top of everything else.. how come I am not surprised..sigh.. soon it will be over with I'm sure!
I have accepted a fulltime year round contract starting Nvemeber 1st with the ski hill. I love my job and my coworkers so much. They have been so invaluable to me and my kids over the last few years. We certainly are very blessed to have the support of so many people.
On that note, I want to take the opportunity to say thank you to all who still frequent this site and leave messages. I also want to wish you and yours a very Merry Christmas and a healthy New Year! Tracy

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 63612 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.