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.
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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!
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.
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.
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
in Auburn for a couple of days, then traveled all the way home Thursday night.
Exhaustion, a bad cold, and re-adjustment
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
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.
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.
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.
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…