Thursday, December 8, 2011

My name is not Cancer. It is Cam.

My name is not cancer. Call me by my name. Tell me I'm beautiful. Ask me what i want to be when I grow up. Believe that I will. Look me in my eyes and see my strength. Talk to me and see how smart I am. I have big plans. Cancer will not define me. Please don't let it change the way you see me. Simply love me and watch me win. 

I found this paragraph on a fellow pediatric cancer mom's Facebook page this evening.  This was shortly after reading that another child, diagnosed with same type of cancer as Campbell, lost his five year battle today.  My heart rips everytime I hear this.  We so badly need a cure.  No child should have to go through this.

Last Wednesday we learned that Campbell's latest tumor, the third on her spine since June, has continued to grow, even while on the five drug chemotherapy protocol.  However, the growth seems to have slowed slightly.  Because of this, Cam's team has decided not to change anything right now and to scan her again 6 weeks later (putting us at January 11th).  This tumor is approximately 1 cm and not causing any symptoms.  As a reminder, it has not been treated with radiation yet.  We are hoping the medications will continue to work and show stalled growth, or better yet, shrinking of the tumor in January.  If not, then the team will discuss options.  The team is comprised of a team of neuro-oncologists, neurologists, neuro-surgeons and radiaton oncologists.  The options would most likely be surgery to remove as much of the tumor as possible, radiation to the rest of Cam's spine all the way up to the brain stem, and changing the chemo-therapy regimen Cam is on.  Or perhaps a combination of these choices.  For now, we bask in Cam's silliness and happiness.

This Monday, Campbell had her regular three week lab draw.  We were pleased that her ANC had risen back to acceptable levels (last week it was 650 - which is not so good) at 1250.  However, her anemia continues to get worse, with a hemoglobin of 6.5 (normal is 11 or higher).  Anything lower than 7 calls for a transfusion.  So, Cam and I headed into the Valerie Fund clinic yesterday for a few hours for Cam to get blood that had been so kindly and generously donated by a volunteer many weeks ago, having no knowledge of Campbell.  Yet again, the kindness of humanity struck me yesterday.  If not for blood donors, kids, any patients, like my Cam would be in bad shape.

Campbell's cheeks "pinked up" within an hour of beginning the transfusion.  We are hopeful that many of the neurologic type symptoms Campbell has been exhibiting lately are in fact related to the anemia, not the Thalidomide (one of the drugs she is on to fight tumor growth).  The doctor's will re-evaluate Campbell's neuro-symptoms next week and perhaps increase the Thalidomide dose as originally planned.  We hope this is possible since this drug is a key player in the protocol Campbell is on.

For today, Cam stayed home with me so I could monitor her for allergic reaction to the transfusion.  I am happy to say that none occured and she will be headed back to school tomorrow!

Thanks for all your prayers and support!