×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Emma with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

Emma’s Story

Emma was diagnosed with metastatic Osteosarcoma~ July 8, 2009...

In April 2009, Emma complained of pain in his left leg above the knee.  She had been skiing and cycling alot, so we thought this was an orthopedic issue.  We took Emma to the orthopedic surgeon for x-rays & nothing was found.   4 wks. of physical therapy, ice, and ibuprofin were prescribed, then an MRI if pain hadn't dissipated.  Pain decreased, so we thought p.t. was helping; in fact, a tumor had broken out of the bone, which can relieve pain.  3 wks. after seeing the orthopedist, at a routine visit to the pediatrician, Emma was advised to get the MRI.  On July 6th, the scan revealed a mass in her left distal femur;  within 2 hours she was admitted to CHLA.  At the age of 13, on July 8, 2009, Emma was diagnosed with metastatic osteosarcoma (bone cancer).  A single, marble-sized tumor was also found and removed by thoracoscopy from his left lung.  Emma completed 6 MAP treatments, then had surgery to remove the tumor on her leg on October 2, 2009.  The femur was replaced with a Compress prosthesis and artificial knee.  Pathology was 75% necrosis; clear margins.  18 total chemo treatments were completed Feb. 28, 2010, with no evidence of disease (NED).

June, 2010, 
Emma had a boating accident at camp.  July 5, 2010 he had a complete revision of the prosthesis (July 5, 2010). 

September 14, 2010 6 mo. scans revealed a tumor in upper left lung.  Sept. 20, 2010-  thoracotomy; total of 4 tumors found, 3 in the pleural cavity; clear margins.  Treatment consisted of 10 rounds chemo (Ifosfomide, Etoposide), the trial drug L-MTP-PE, and radiation to the lung.  Completed: May 15, 2011- Ifos/ Etop; June 24, 2011- radiation; & L-MTP-PE- June 28, 2011.

July 16, 2012- 15 mo. scans reveal 2 cm. tumor in lower right lung.  July 22, 2012- thorocotomy; 2 tumors found;  lobectomy of lower right lung; clear margins. Gemcitabine/Docetaxel completed January 2013.

February 2013 began Hu3F8/IL-2 trial at MSKCC in New York.

We can't begin to express our gratitude for all the messages of support we've received!

Debbie, Roy, 
Emma, and Bo Knickman




 

Latest Journal Update

Clear Scans

Scans clear today. Another month of chemo down. Many more to still to come. ANC is still down so chemo will be backed up one week. Making the 6 month mark since the last recurrence is a very positive sign. The normal progression is quicker and quicker recurrences. There was 4 months between the last two, but now Emma is at 6 months. Emma is tired and the side effects seem to last longer each treatment, but Emma willing to endure.

Thanks for the continued support.

heart
41 people hearted this

Comments

17 Comments

Susi Wissink
By Susi Wissink
I just wanted you to know that people are still following you and care about how you are doing. Hang in there, Emma.
Linda Zerangue
By
We are thinking of you and praying for continued courage and a cure for Emma. The Zerangues
Susi Wissink
By Susi Wissink
Clear scans are such great news. Sometimes all you can do to get through the day is endure. That in itself is success.
judy mescon
By
YAY!!!!!!!!! So happy for good scan news. Hang in there Emma, (and Roy and Deb and Bo too)...you've been through waaaay too much, but hopefully this chemo will keep you LONG NED! or better yet, forever NED!
Hugs,
Judy
mom to Jenna
Candida Stoutenborough
By Candida Stoutenborough
It is always so good to hear those words..."clear scans." We continue to keep you all in our prayers...and especially you, Emma, for all the pain and suffering you have to constantly go through. One day...one day at a time...you will get there!

Love, Candy
Cynthia Johnson
By
Thanks for the update! Happy to hear about the clear scans although I know that it does not make up for the suffering through chemo. Sorry about those stinky side effects! One of these days a researcher who has been through chemo is going to come up with a way to make the side effects less severe - hopefully soon.

I just had a clear PET SCAN Monday so glad to know all my weight loss at least is not obviously cancer but more tests to run. Know I should be feeling very grateful but I woke up today reminded why one "nickname" for ME/CFS is "living death" - feeling really bad and couldn't even move. Then I read your post.

When I read the phrase "willing to endure" it helped put me back in a more positive perspective and reminder - that no matter how much I "have to do" and may not be able to today, I to need to be "willing to endure" what this particular disease brings each hour or day. As a cancer survivor from a family of people who had cancer treatment (sometimes for years), I know it really stinks and I am sorry you all are continuing to go through this. Yet I am always happy to get the updates regardless of what 's in them, but particularly glad there is some positive news like this one with the clear scan and 6 months since the last recurrences.

And although this message may not make sense (like a conversation would), I thought I should let you know that it helped someone else who is very ill try to be a bit more positive today and willing to endure.

Don't write many posts as much as I used to as this computer hurts my hands but read all posts via email, think of you all often, wish I could be there to help and hope to see you all sometime.

With great affection,
Cynthia Johnson (FYI - my son also reads all the posts/emails and follows the ups and downs of your journey)
Lee Ann Eurs
By Lee Ann
Fantastic news!!! Give Emma hug from me!
meredith smith
By meredith smith
Slow and steady...one foot in front of the other. You CAN win! God bless you!
Julie Braden
By The Braden Family
That is great news! Praying for continued healing and strength to endure!! Take care -
Lisa McCaffrey
By Lisa McCaffrey
What great news for all the Knickmans! Rest up Emma but praying the side effects will shorten from here on out.