Christie’s World, or Life Is Not for the Faint of Heart

Again, I apologize for being out of touch. This cancer thing is awfully unpredictable sometimes, as anyone who has dealt with “The Beast” knows. Every time we’ve thought we had things understood and under control, something else happens to throw a humongous monkey wrench into the mix.

 

Christie started having severe headaches, along with a stiff and sore neck, a couple of months or so back. The oncologist at the county hospital where she was being treated ordered a CT scan and lumbar puncture to rule out CNS involvement. All tests came back clean but Christie’s headaches continued. On March 29, Christie started having uncontrollable tremors and shudders that wracked her entire body, as well as some incoherence and confusion. We took her to the local hospital down the road rather than the county hospital because A) we felt time was of the essence, and B) having very recently been approved for SSI, she now has Medicaid. She was diagnosed with a severe potassium deficiency, given IV potassium and a scrip for potassium pills, and sent home. She became extremely fatigued and lethargic, and complained of feeling, in general, extremely sick. She spent a lot of time crying, which she said was because she felt so ill and hurt so badly.

 

On March 31, Christie had an appointment with the oncologist, who reminded us that the lumbar puncture and CT scan were clean and surmised that the headaches were from meds. She also felt that the ESHAP contributed to Christie feeling so poorly, which seemed plausible. Doc Neerukonda then sent her home with a fresh hydrocodone scrip for the pain.

 

On April 1, Christie became incoherent, confused and unable to walk. She was definitely suffering “altered mental status,” even going so far as to attempt to climb out the window of the truck on the way to the ER. The ER doc diagnosed meningitis and admitted Christie, then started her on broad spectrum antibiotics until such time as they could determine whether it was viral or bacterial.

 

The next morning, her old oncologist, Dr. Diggikar, came in and informed us that it was not meningitis but involvement of the central nervous system. That evening, Christie, who was by that time almost comatose, was moved by ambulance to the University of Texas - Southwestern Medical Center’s Zale-Lipshy Hospital in Dallas, one of the top two cancer hospitals in the state, the other being M.D. Anderson in Houston. The social worker at the county hospital had already worked to get Christie into this hospital because it’s the only one in the area that does transplants; this time, Dr. Diggikar used his influence to get Christie in immediately. Beds here are hard to come by, and patients are accepted by referral and review only.

 

When she got here, 80% of her cerebrospinal fluid was comprised of malignant cells. Plus, Christie had several small strokes, impacting at least her facial recognition and cognitive thinking sectors. She is now remembering how to speak and convey her thoughts lucidly, and her bladder is being retrained. She has no conscious function over her elimination processes right now, and that is devastating to her. She has to wear adult diapers for now, and is so very ashamed and embarrassed to have “accidents” that require cleaning up after.

 

She is also suffering from severe depression, for which Lexapro was prescribed 4 days ago. She is barely eating or drinking and flat refused to do either for about a week. Prior to being brought here, she had barely eaten in 2 weeks… which we thought was an effect of the ESHAP regimen. She had already lost about 50 pounds but in the 3 weeks has lost another 10.

 

Christie had an Ommaya resevoir implanted a week ago; through this she will receive weekly doses of methotrexate for maintenance, then one last dose of Hyper CVAD chemo. You see, today she has 0% malignant cells in her cerebrospinal fluid and, it appears, no sign of lymphoma remaining in her body! These doctors are wondrous miracle workers… they saved my baby girl’s life!

 

After the last dose of Hyper CVAD, we’ll start planning for her SCT. Christie’s younger brother, Ryan, came in last Friday to be tested to see if he’s a donor match for an allo SCT. If he isn’t, then the doctor says we’ll do auto - the lymphoma never invaded Christie’s bones, she is young and has been otherwise healthy, as well as EXTREMELY responsive to chemotherapy. Plus, the risk of graft v host is too big, especially considering that she’s only 19 and theoretically has a long life ahead of her. Having Christie on anti-rejection meds for the rest of her life isn’t something the oncologist wants to take a chance with.

 

She’s not in the best shape right now but my husband and I both feel that she’s past the worst of things now. We came so close to losing her… I cannot imagine my life without my little girl. I know her odds of making it, long-term, are about 50% but odds are numbers and Christie has always seemed to defy those! Everyone is positive and hopeful and, as usually happens, loves Christie. We know she’s going to make it… why shouldn’t she be one of the 50% who do?

 

I’m on a loaner laptop at the hospital now and am about to fall asleep at the keys. I’m overwhelmed and exhausted, near to being as broken as I’ve been in a very long time. So much has happened… but I am about to drop so will try to get back to you all tomorrow.