Childhood Cancer

Recurrence or progression can happen at any time during treatment or after therapy is completed. Occasionally the child has no symptoms of tumor growth (or regrowth) but the MRI scan shows an increase in tumor size. More frequently, however, the signs and symptoms include many or all of the indicators that were present at diagnosis. For a brain tumor these include:

  • Headaches (often with early morning vomiting)
  • Fatigue
  • Dizziness
  • Seizures (convulsions)
  • Staring spells
  • Visual changes: loss of peripheral vision, double vision, jiggling of an eyeball, inability to look up, an eye turning inward or outward
  • Weakness in hands on one or both sides of the body
  • Unsteady gait
  • Word-finding problems
  • Drowsiness
  • Facial drooping
  • Nausea and vomiting
  • Hormonal or growth problems
  • Hearing loss
  • Changes in appetite or thirst
  • Behavioral changes
  • Changes in school performance

For a spinal cord tumor the symptoms may be:

  • Back or neck pain that awakens your child from sleep
  • Scoliosis (curvature of the spine resulting in leaning of shoulders to one side or a hump noticeable in the back)
  • Torticollis (tilting of the head and upper spine to one side)
  • Weakness or sensory changes in arms or legs
  • Changes in bowel and bladder control

I think our respite is ending. Jen had a scan on Monday and we knew when we looked at them it would probably not be good news and that was confirmed today when we met with her oncologist. I don’t have the radiology report yet but the scans will be discussed at tumor board Friday. It seems the original area of tumor continues to look stable and maybe even a little better, but there appears to be an area of new growth definitely crossing the midline now to the right side of her brain. Instead of starting what would have been her seventh round of Temodar® she is on hold until Friday. Two possibilities mentioned were CPT-11 and high dose Tamoxifen®.

This has been a hard day. I have already made some phone calls as I know from our discussion with the doctor he doesn’t think there’s much lag time before she needs to be on something. The last 4 weeks of Procrit® shots have moved her blood count from anemic to normal and she is physically active and still feeling good with the exception of some fatigue. She has been having some slight difficulty with her right hand grasping and holding but I am more concerned with her description of losing awareness of what it does. She’s having more memory problems and the beginning of some incontinence. The 29th of this month will be the end of 12 years she has been dealing with this. Enough! But it doesn’t look like that is meant to be.

The majority of brain and spinal cord tumors regrow or progress at the original tumor site. However, occasionally, the tumor spreads to another area of the brain or spinal cord.

Morgan was 4 years old when she relapsed. The tumor was found on a routine scan almost exactly 2 years from the day of first diagnosis. The tumor was again a medulloblastoma and it was small in size, but that didn’t matter; the only thing I could think of was that we did the strongest chemotherapy out there and it didn’t work, now what? Doctors presented us with options, and none seemed all that promising. We talked to the top doctors in the country and many of them told us that Morgan had such a small chance of survival at this point that it might be better to stop treatment all together. Those that did offer treatment told us about traditional photon beam radiation therapy whose long-term side effects could leave Morgan seriously mentally disabled. Our options seemed dismal. Then we heard about a doctor who had just started working with a new kind of radiation (proton). We got on a plane with Morgan’s scans in hand and went to Boston where we were told that the new treatment might not only cure Morgan but possibly also spare her some cognitive late effects. This was the first doctor who had given us hope. Literally the next day, Chris and I packed up our home as well as Morgan and her two younger sisters (aged 2 and 10 months) and drove to Boston. Morgan is now 18 and doing great. [To read the rest of Morgan’s story, see Chapter 25, Looking Forward].