Gibbs

I got a text today from my Haitian friend Limanes, who was with us in Florida. The radiation did not work for her son Gibbs, fourth of five energetic and happy children.  He is three years old.  In November he was in constant pain, she was crying all day and exhausted.   Now she and her husband Josenel, who calmly rocks him singing Creole hymns, have the devastating results of the post-radiation scan at the same time as the catastrophe in their home country.  For Limanes, they merge in some ways I think, the horror and thwarted future emblematic of the destruction cancer has brought to their family.  I am heartbroken.  Please pray for her, for Josenel, for pain-free last months for Gibbs, and for the sustenance of his siblings.

One Year

One year ago today Lucy underwent her 7 hour craniotomy at Egleston.  Now, in addition, relapse and radiation are behind her, and her diabetes insipidus, hypothyroidism, and adrenal insufficiency (the combined effects of losing pituitary function) under control.  After the post-radiation MRI last week, her doctors spoke very hopefully that we have seen the last of that “meddlesome” tumor.

From here she faces a lifetime of chronic illness (panhypopituitarism), a difficult thing to process as the acute heath concerns recede.  Her endocrinologist spoke firmly with us about the challenges ahead, primarily  the risks associated with adrenal insufficiency if she ever gets careless with her 3/day hydrocortizone, as well as a likely lifelong struggle against obesity.  We are tasked with getting her weight down before November, which feels impossible because of how low-calorie her diet already is, but we are gearing up for an intense effort in order to maximize the effect of the growth hormone, which she will begin getting one year after radiation.

Lamentations 3, as it has so often, speaks my thoughts for me.

I’ll never forget… the utter lostness, the taste of ashes, the poison I’ve swallowed.  I remember it all–oh, how well I remember– the feeling of hitting the bottom.  But there’s one other thing I remember, and remembering, I keep a grip on hope: God’s loyal love couldn’t have run out, his merciful love couldn’t have dried up. They are new every morning. How great your faithfulness!

500 Westover

I’ve always wanted to grow into my maternal grandmother’s cheerfulness, but this past year I needed  to immediately inherit that happy patience that does not get bored or angry waiting around, and that ability to turn a terrible day into a story that has everyone else hysterical with laughter.  One of the great things about being back to Atlanta is getting to be with her lots at her favorite time of year.

Small Beginnings

After two weeks of vainly attempting to get to the bottom of the laundry basket, today I succeeded.  Lucy enjoyed another good day at school, I cooked dinner and we ate together, and no one has anything left of our horrible cold (besides Garrick, whose nose issues are perpetual).  I’m hopeful at last that some order will start to be restored in our home and life.

The best sign is that the children are progressively enjoying each other more.

Brave Gift

Jack’s name is short for John Richard III, which means gift and brave.  He has been both during all of our recent upheaval. Here are a few shots of what he’s been up to, several of which seem to involve costumes… proving that he’s mine, despite the big brown eyes.

Sequoyah, father of the Cherokee alphabet

building a treehouse on Lookout Mountain

shooting Anne’s bow in Auburn

westside trains

laser fighting with Terrell

holding Lucy's hand into treatment

Wow! Finished!

Lucy and Nurse Gina

Lucy has finished her proton radiation! She went for her final treatment in Jacksonville last week followed by a Hello Kitty party thrown by the staff, then headed straight to Thanksgiving celebration

Uncle Stephen

in Auburn for a couple of days, then traveled all the way home Thursday night.

Uncle Stuart

Exhaustion, a bad cold, and re-adjustment

to family and home have slowed our full acceptance of the good news, like when exams are over but the stress lingers…

Dr Marcus

Dr. Marcus (shown here with Hello Kitty because Lucy had just woken up and did not feel like posing; he also holds Lucy’s card for him which came from Swaziland), her radiation oncologist, informed us that the latest research gauging the

Katie knew the proper kind of cake!

efficacy of proton radiation in craniopharyngiomas shows a phenomenal success rate. He does not expect Lucy to have any other side effects related to the treatment itself from this point because of the small amount of brain that was radiated. We have joked that she has not lost any hair, but I have been losing mine for months– a symptom I actually found common among the other patients’ mothers, apparently an outcropping of stress!

Lucy feels anxious to understand what else is ahead of her: how many MRIs, what kind of IV, etc. She feels dislocated after getting used to her routine in Florida.

We are having lots of conversations… It is wonderful, however, to see a safe and

calm look return to her eyes after so many days in a row colored with anesthesia and the weariness of her unrelenting effort toward courage.

We remain grateful for the wonderful staff at the Florida Proton Institute, and for the friends we met who were making the same journey– they remain always in our hearts.

Who’s in charge here?

Giving dad a "finger-stick"

This is Lucy posting today…

My dad has been staying with me in Jacksonville since Tuesday. I sent my mom back to Atlanta to rest and spend some time with Jack and Garrick.

Customized shoes

I have my dad here until Mommy returns on Saturday. He is silly, but is not too bad to have around. For example I was having a hard time explaining to him, that I didn’t like the earth tone brown shoes he picked out at REI recently. He came up with the idea to glue on some Rhinestones. They actually came out pretty well.

This week I am the first person to go into proton in the morning (around 7:15 am). It is nice to have that behind me early each day. It gives me time to get some real food (like a Chick Fil-A biscuit) before local restaurants start serving lunch.

We get home and I put my dad down for a nap.

Today I cleaned up the room while he slept (not kidding) and then did drawings on the ipod Touch until i could get Dad going again.

Daddy down for his nap

I actually had to check his “finger-stick” since he was acting so puny. It was ok, but I told him he would get a “magic band-aid” if he would go ahead and get it over.

I think daddy is having a little challenge keeping pace with my nightly need for juice before I have to stop drinking at 4 am (they call it NPO, but not sure what it stands for).

In short I am doing a lot better.

No more of those troublesome headaches. I am not even that fazed by the daily naps I take during the treatments. I have even mentioned the possibility of staying in Florida for more treatments. Not sure if my parents can handle it though…

Treatment Notes

 

 

 

 

 

 

 

 

A few details about Lucy’s actual radiation:

The last couple of weeks have been a challenge because her time slot moved to later and later in the day, which meant more of her NPO time was awake, until Friday she was the last child, and her appointment was at noon!  On this schedule she sleeps most of the afternoon, stays up late, and isn’t hungry until the middle of the night.  But next week she is back to the first slot; she’ll be much happier getting it over with, and she’ll resume more normal eating and sleeping patterns.  I thought at first that the difficult part was not eating for 6 hours before and not drinking for 3 hours before (and trying to time her DI medicine so she wouldn’t be too thirsty when she was not allowed to drink), but I realized that the emotional weight of the impending challenge made up the larger part of the difficulty for her.  So we are grateful for the next week of early appointments!

Also, the anesthesia team agreed to come in on the Sunday before Thanksgiving to make up for the Veteran’s Day Holiday, insuring (barring technical difficulties) that we’ll be completely done in time for an especially meaningful holiday!

Dr. Marcus, the radiation oncologist overseeing her, says that everything is going well, and that recent evidence on the efficacy of proton therapy in craniopharyngiomas (her tumor) has him considering even shaving a day off her treatment plan.  This would spare more exposure to the optic chiasm, damage to which is her main risk, which would probably appear as loss of peripheral vision down the line somewhere.  And any less radiation also means less risk of secondary malignancy, when healthy tissue exposed to radiation warps into more, unrelated cancer years later. The most recent numbers on this indicate that 20% of pediatric patients treated with traditional radiation experienced this– a concerning number.  The significant reduction in exposure to healthy brain cells with proton radiation, however, corresponds to a reduced risk for secondary malignancy as well as other late effects, for which they are still gathering the numbers. In addition, the placement of the 3 beams used to target her particular tumor leaves basically no risk for cognitive loss.  I’ll end that technical paragraph by saying YAY!

Another important explanation about the tumor itself:  because it is officially benign (only locally invasive and unable to become metastatic), and because radiation continues to have effects for months afterward, when we have the MRI in January the tumor will still be close to its original size.  Radiation only kills cells programmed to divide, and many of her tumor’s cells do not have that capability.  So as necessary as the radiation was to save her sight and eventually her life, there will be no beautiful blank space on post-therapy scan.  Her tumor will likely continue to shrink over time and the odds are excellent that it’s been de-activated from causing trouble again.

All of her caregivers smile when they come in to look at her, from their perspective a straightforward and happy case.

 

Baby Therapy

 

 

 

 

 

 

 

My sister Joy and her 3rd child Georgia Caroline came Tuesday.  They were both excellent company,

enhancing playtime,

 

 

 

 

 

 

 

 

going with us to proton,

 

 

 

 

 

 

 

 

and encouraging us when we were tired.

 

 

 

 

 

 

 

 

Georgia’s bright blue eyes charmed all the staff

 

 

 

 

 

 

 

 

and palpably lightened the mood of many cooing parents and patients in the RMH dining hall and at the treatment facility.

Thanks Harry, Mom, and Gigi (and Will and Sam!) for all your help while they were here!

Only 12 to go

After a weekend HOME (elaboration redundant) Jax welcomed us back with wonderfully clicheed breezes and balmy sunshine. Our long NPO morning wait passed in tricycling and giggling, Lucy had another eventless treatment & a good nap, there were vegetables in the fridge (golden rarity) and we cozied the evening by with videos of our friends in Swaziland on YouTube…
We are grateful for every loving prayer and thought for us. We feel God’s strength, humor and beauty waiting just as we need them moment by moment– an exercise in living wholly in the present, in itself a gift.