* In the most literal sense, we are home. *
We are in Gastonia. It feels good to be back in our own beds, cooking in our kitchen. I can’t say enough about our amazing apartment in NY. Some wonderful people from work helped us find it, and it was about as perfect as it could be: 3 bedrooms, all facing the courtyard, on 63rd between 2nd and 3rd, one of the quietest streets in the upper east. It was only 8 blocks from the hospital, 6 blocks from Central Park, right near the F, Q, 4, 5, 6. Our neighborhood had Serendipity, Tony Di Napoli, Dylan’s Candy Bar, Pinky’s, 2 amazing grocery stores, some of the best pizza in the city, and great (famous) people watching. The apartment itself was huge by NY standards, with a quiet, separate master suite, and even one of the bedrooms next to the other bathroom had 2 twin beds so we could sleep in with Haldora and help her get to the bathroom or get her what she needed right away, without fear of bumping her. It came with the requisite heavy metal door, adorned with several locks, and the crazy way-too-hot heat system that seems to come with NY apartments, but the windows opened, it was quiet, so sleep was plentiful. We even got to know most of the doormen.
As perfect as it was, it wasn’t home. Being home has been great, but surprisingly exhausting. Shopping, cooking, picking up / putting away is somehow more tiring. Alex and I aged this last month, so maybe that’s it.
* We are amazed and grateful *
In addition to Dr Souweidane, preeminent pediatric neurosurgeon, and Dr Karajannis, reknown Chief of pediatric neuro-oncology at MSK, last Monday we also met with Dr Walsh, *THE* leading geneticist in pediatrics in the country.
Dr. Walsh was very cool. He’s a pediatrician, geneticist, and hematology-oncologist. He studied under Dr. Harry Dietz, who discovered the gene for Marfan syndrome, and later the genetic mutation for Loeys-Dietz syndrome. He was fascinating. Basically he’s a total badass, most highly recommend by MSK, St. Jude, and others ... and is only about 40 years old. He spent over an hour with us, explaining the testing, how much they know now in the field, how fast it is growing, what will happen now and over time ... amazing. I said it before, but getting to MSKCC, getting connected with Dr. Souweidane, etc... it’s probably the best thing that could have happened in all this.
* We are waiting *
Waiting for the molecular testing Dr. Karajannis will oversee. Waiting for the 1st set of genetic testing from Dr Walsh. We should start hearing from them in 4 to 6 weeks. At the heart of it all are two questions: (1) Are her T-cell leukemia, a rare, aggressive form of the disease, and its treatment - specifically the cranial radiation she endured - connected / causal to the remarkably rare, 1 in a billion brain stem tumor? All along we thought that they must be connected - how could they not? The doctors are not 100% convinced, which is why they are trying to understand how our precious girl could be hit by a meteor twice (actually - you are 4 times more likely to be killed by a meteor than to have an angiocentric glioma in your brain stem). The other question is, (2) is there something we can learn about other potential risks she may experience. After all, at just 9 years old, she’s been thru more than many do in a lifetime. Dr Walsh did warn about insurability, or lack thereof, as a potential consequence of the information, but we already learned she was uninsurable for life insurance, so bring on the info.
* We are shell shocked *
Haldora is doing amazing. She went to school for a few hours both Wednesday and Thursday. Even before her surgery Haldora was determined to go back for the Valentine party - she insisted on going back when Hunt went back. That was her goal.
What people don’t always understand is surgery was not recommended by most of the people we consulted. From doctors that knew her for years to specialists at other institutions we dated - no one other than Dr Souweidane recommended surgery. At least not until she was physically impacted because the risks of surgery were far too great. There was a high likelihood she would at least have near term structural impacts to her breathing or swallowing ... and it could be permanent. She has none of those impacts. Haldora was breathing on her own by the time we saw her and she passed her swallow test just a few hours later. She is having issues with feeling on her left side, but that isn’t impacting her significantly and Dr Souweidane expects it will lessen or go away.
When we dropped her off at school, several people asked about medications, sure she would have a tackle box full of pills. All she is taking is Tylenol, and not even every day. We did learn her pain medicine masked the impacts when she pushed too hard, and she had a few setbacks, but now she is being more measured and is coping well with the occasional hot or cold pack, Tylenol, or the occasional massage. At least she she is coping physically most of the time.
Getting back in the groove has been hard. I haven’t felt like cooking (quelle horreur!!), I haven’t wanted to talk with people much ... I just want to cocoon with Alex and the kids, like when we were in NY. There has been so much to do, including packing up the last of the Christmas decorations (gulp!!), but it’s all exhausting.
Haldora is doing amazing. Today she played relay biathlon with Hunt (she did the shooting) and went for another long walk in the neighborhood. She is frustrated by what she can’t do, and a small quiet piece of Alex and I can’t believe all she CAN do. Alex aged 15 years thru this, and I aged 12 ... but at least I’m finally younger.
So that’s where we are ...