Today Lucy had 2 procedures for the price of one general anesthesia session. She recieved a port (under the skin way to access a central vein) for the sedation she will require while getting radiation later this month. She also received fiducials (under the skin screws) that will help to ensure precise direction of her radiation.
We all fasted after midnight and arrived at 10am to go to the OR at 12. At 1240 they told us they were running late. She finally went at 2pm. Tough waiting for all, but Lucy was very brave. She was helped by a dose of nasty tasting “Happy juice” (versed) that relaxed her and will muddle any memory of the operating room.
She came out of the OR after 2 ½ hours or so and went to recovery. Things went well and we had no complications other than a wobbly daughter when we got home. She is steady now that the drugs have worn off.
We have the simulation for radiation tomorrow where they line up their protons to blast away that bothersome recurrent tumor.
Yesterday we met her local Neuro-oncologist (brain-tumor doctor) at Nemour’s children’s clinic. It is an amazing >10 story building that overlooks the St Johns river. Children’s clinics are usually outfitted with all kinds of toys and activities. Here is a shot of Lucy playing house on the 8th floor overlooking the river.
Today is the day that Lucy goes in for the “fiducials” and her port. She will go under general anesthesia for these procedures. They say it will be quite short ~1-2 hours.
She has been NPO (nothing by mouth) since midnight and is a little grumpy, but she did beat me in a game of checkers – hypoglycemic and all.
The fiducials are tiny (3mm) titanium screws that will go underneath the skin and serve as guides for the radiation when they are setting it up. Dumb-doctor-dad had imagined Frankenstein like screws protruding from her skull. Nothing like this at all, says her doctor. She won’t even be able to feel them once the small wounds heal.
We will keep you updated.
Yesterday we had a day of appointments to meet all the members of the team who will participate in Lucy’s radiation. We were surprised that the other patients were mostly older men who had come for radiation to their prostates. I asked for a 2 for 1 deal getting my prostate pre-emptively radiated, but they said no such special existed.
At the proton center Lucy met the team: Social worker, 2 nurses, Dr. Marcus and his resident, as well as a new nurse practitioner who will coordinate the care with the other hospitals.
The team won Lucy over with their skill at making the experience as low-stress for children as possible. She experienced a barrage of smiling people who knew her name, were patient with reluctance or protest, and kept asking her preferences on everything from juice to hobbies. She decorated her chart with stickers, which she concluded over dinner was the best part of her day, and was given a pig whom she named Ella.
It was an anxious bedtime, as Lucy said Ella had just been adopted from China and kept crying because she was not used to her Mommy yet. But eventually she settled down and everyone slept well.
Thanks for all the love sent our way this week!!
Today Lucy had auditory and cognitive testing here at her regular cancer office; on both she cooperated well and got great scores.
We leave tomorrow for Jacksonville, stopping over in Alabama for the night. Next week we meet with insurance people, the radiation oncologist, the neurosurgeon and others. Lucy will have a minor procedure in preparation for the radiation (we can explain more about this next week), and have a port put in for IV access to last the whole treatment time. Then Thursday she has a CT simulation of the treatment to double-check accuracy before the real thing.
We’ll keep you up on how everyone is doing.
Right now she and Jack are both a bit testy, but it is always hard to tell whether this is due to normal fluctuations in equilibrium and self-control, or outcroppings of stress. We need wisdom to know when to stop what we are doing to ask questions and take eye-contact time to listen to and hold them, and how to combine this awareness and sensitivity with simple, firm discipline that lets them know their world is ordered as before.
Garrick is processing his complex emotions through joyful, disastrous action– climbing onto the table and eating leftovers, climbing into the sink and turning the water on himself, removing air vent covers and dropping plastic forks and colored pencils down into them, uncapping permanent markers, unplugging cords, and removing child safety outlet covers.
His exuberance forces even the worst days to be limned with humor!
For the Pittmans,
For those who are confused about a reference to recurrence, here is our post from our old blog about it, dated September 3rd.
We are sad to let everyone know that Lucy’s tumor has recurred as a small piece adjacent to her optic chiasm. Currently we are deciding between another (but different) surgery, and proton radiation therapy, which has fewer side effects short and long term than traditional photon radiation, making it preferable for growing brains. The surgery would likely be done here in Atlanta; the radiation would involve a 2 month stay in Jacksonville FL or one of the other 3 centers in the US where this kind of radiation is done.
She is feeling fabulous– strong, happy, and thrilled about ballet and preschool.
Check back here for news in the coming days and weeks.
We pray that you’ll have the strength to stick it out over the long haul– not the grim strength of gritting your teeth but the glory strength God gives. It is strength that endures the unendurable and spills over into joy, thanking the Father who makes us strong enough to take part in everything bright and beautiful that he has for us. (Colossians 1:11-12)
After nearly six weeks of waiting, speaking with doctors, and sifting through information, a treatment plan for Lucy’s craniopharyngioma recurrence has clearly emerged.
She will go to Jacksonville Florida, one of four places in the US where proton radiation treatment is available. This is not an experimental procedure, and has been used for pediatric cancer with great success for several years. The short and long term risks and side effects both cognitively and otherwise are greatly reduced from traditional (photon) radiation. The treatment is precisely targeted and controlled so that very little healthy brain tissue is exposed, and it is fractionated, which means that the amount of radiation is broken up into 28 doses over so many days. It usually takes less than 5 minutes per session, but because of her age she will be sedated, which will increase the time some.
September 28th we have a few days of preliminary procedures and paperwork. October 12th we return to start the actual radiation, which will continue five days a week for 6 weeks. I will have Garrick with us in Florida, while Richard and Jack will remain at Grady and E Rivers. The weekends are free, so we are hoping for some fun beach time together and maybe a few trips back to Atlanta.
We have talked with her about it, and she is not worried or afraid, just dreading the IV. Jack is nervous about me leaving, but both are optimistic and determined to meet this next challenge with courage.
We will keep you updated here, and continue to rely on your support and prayers,
Hello everyone, for many reasons we have decided to migrate our blog to this location.
If you want to read any of our old posts you can find them here – http://web.me.com/richardpittman
Lucy dances hard on the back porch