Hello Everyone,
I just wanted to let you know what's been happening with my daughter Chelsea. It's been along time since I've posted about her and have been waiting to have some clear answers before writing.
As some of you might remember Chelsea had a very tough go of it with the surgeries last summer. The size of her tumor was changed from a 4.5-5 cm tumor to 6cm on her medical records. This of course was a very challenging time for everyone involved including her fabulous doctors at UCLA. She had an incredible amount of complications which were addressed by every specialist you can think of and after a 3 month hospital stay she got to come home on Sept. 16, 2006. There was a portion of the tumor left behind (20-25%) as it was on the brain stem and too dangerous to remove. In late Oct. she started Novalis radiation treatments - 28 in 6 weeks. She felt the effects of the treatments the first day. She had a sunburned sensation- not red but felt like she had been out in the sun all day. Within the first week of treatments she had constant nausea, vomiting, headaches and fatigue. They ruled out any problems with her shunt and prescribed meds to control the vomiting and Vicodin for the pain. By the end of the third week she had lost another 10 pounds and they decided to put her on Decadron. She had been on this most of the summer and although it does have nasty side effects it is also a miracle drug for many patients. Within a few days of being on this drug everything changed. All her symptoms disappeared. She started eating like a pig, had energy, no nausea, vomiting or headaches and selpt great at night. She did lose a patch of hair approx. 2" x 5" on the treatment site. After the treatments were completed she got her Picc line and feeding tube removed. She hadn't used the feeding tube since early Oct. but they wanted in place until radiation was complete. During the treatment phase we stayed in LA Mon-Fri. and came home on the weekends. It was strange to be back home after spending nearly 6 months in LA with only a few weeks back and forth for visits.
Now this puts her at about mid Dec. and she started a very long steroind taper. 25 days. On the day after her last dose she again started having all the symptoms. The doc's said just hang in there as sometimes it takes awhile for the body's own system to kick up and produce the required hormones to take care of itself. It has been a little over 4 weeks now and she is still feeling awful. On Tuesday she had a follow up with the radiation oncologist. When we checked in there was a message to call the neurosurg/radiation doc as he wanted her to have an MRI in the afternoon. She was already scheduled for another doc appt. that would conflict with the MRI and asked if she could come back on Mon to have it done. The answer was no. He wanted to make sure there wasn't something else going on that was causing her headaches and nausea. Within an hour I had been contacted by her other 2 neurosurgeons offices to set up the shunt resetting and follow up after the MRI. I can't believe how great these doctors are. After the MRI we had to go over to the emergency room so they could x-ray her skull to check the shunt setting. It looked good to them so at 9:00pm we headed to the hotel. The next morning (yesterday) I got a call that they wanted one more x-ray just to double check something on the shunt. In the mean time I got a call from her main neurosurg with the MRI results. Great news, there was no swelling, the brainstem has moved over just a fraction, and the the tumor looks like it is caving in on itself. I am thrilled. They want her to hang in there for a few more weeks to she if she feels any better and if not they will see her again to make sure her adrenal glands are working right. They don't want her to go back on the decadron.
I just have to say I wonder why more people don't go to UCLA. The hospital is rated top #5 in the nation and #7 in neurosurery. I know HEI seems to get most of the attention here in So. Calif. when it comes to AN surgery but I can't imagine being in a better place with all the bases covered from every department of medicine. I know in Chelsea's case there was the high posiblity of all her complications in which case she had all the experts at her side taking care of every problem. She had head and neck surgeons for the paralyzed right vocal cord and no swallow reflex, cardiologist for the tachycardia, gastro for the feeding tube, neuro-rehab, her main neurosurgeon, Dr. Donald Becker, and 2 other neurosurgeons that specialize in shunts, Dr. Bergsnider, and radiation, Dr. Antonio De Selles, then last but not least the radiation-oncologist. Every area was covered. I can't tell you how thankful we are. After all of this Chelsea was left with only a small numb spot on her right cheek and right deafnes. Her right vocal cord is paralyzed but she still has a voice. They want to do another surgery before June to reinnervate the nerve in her vocal cord that has a high success rate which should almost completely restore her voice. She has no balance issues, no facial paralysis or eye problems. They think that as soon as the glands kick in that the headaches should subside. I thank God everyday for these doctors and her outcome. I know it is due to their expertise, dedication, and compassion that Chelsea is here today and doing so well.
Her next step is another follow up with Dr. Becker in April, Vocal cord surgery before June, another MRI in June (6mo. check for radiation) and hopefully start school in the fall.
Thanks for all the support, thoughts and prayers. They have been a great source of comfort during this long and difficult journey.
All My Best,
Michelle
