| 4/29/2020 | Run | 9.1 mi | 1:30:41 | |
| 5/1/2020 | Run | 7.6 mi | 1:14:23 | |
| 5/4/2020 | Run | 5.0 mi | 48:14 | |
| 5/6/2020 | Run | 5.0 mi | 48:35 | |
| 5/8/2020 | Run | 8.0 mi | 1:18:44 | |
| 5/9/2020 | Run | 3.2 mi | 30:18 | |
| 5/11/2020 | Run | 5.0 mi | 47:44 | |
| 5/13/2020 | Run | 9.1 mi | 1:30:01 | |
| 5/15/2020 | Run | 5.0 mi |
48:09
|
Jane Update:
Jane had her MRI earlier this week at the Yale's Trumbull facility (the only place locally they're doing pediatric MRIs). For the first time ever I was more nervous about bringing her into a medical facility than about what the MRI might show.
It was quite a novel experience. Jane hadn't been out in public since school closed 3/13! She knows what's been going on with the pandemic and with social distancing, but it was a different matter to actually experience needing to wear a mask and staying 6 feet apart from people. I think she was a little shocked by the process. I was a bit overwhelmed myself! I've been working in the COVID call center, but I haven't had direct patient care since March, either, so even I had some culture shock with having our temperature taken at the entrance to the facility. We both wore masks and old clothes so we could throw them in the laundry as soon as we got home.
The staff at the MRI center could not have been more welcoming, professional, and reassuring. Jane tolerated an hour and a half in the scanner, complete with IV and contrast. She's a rockstar.
I got a disc with the MR images and uploaded them to NIH the next morning, and our team reviewed them at their NF Clinic later in the week. I am happy to report the abdominal nodule is very stable in volume and has no change in its appearance, so both of these things are reassuring. However, our team continues to think that removing the nodule is reasonable, not because they have concerns for malignancy, but because of its location and potential to affect Jane’s kidney in the future. Therefore, we’ll be meeting remotely sometime soon with the team’s neurosurgeon and urologic surgeon to discuss the implications of a surgery. We are still waiting on the volumetric analysis of Jane’s facial plexiform neurofibroma but the team doesn’t have any concerns of obvious growth, which is a great news, between hold on Jane's selumetinib this past year and lowering the dose.
I got a disc with the MR images and uploaded them to NIH the next morning, and our team reviewed them at their NF Clinic later in the week. I am happy to report the abdominal nodule is very stable in volume and has no change in its appearance, so both of these things are reassuring. However, our team continues to think that removing the nodule is reasonable, not because they have concerns for malignancy, but because of its location and potential to affect Jane’s kidney in the future. Therefore, we’ll be meeting remotely sometime soon with the team’s neurosurgeon and urologic surgeon to discuss the implications of a surgery. We are still waiting on the volumetric analysis of Jane’s facial plexiform neurofibroma but the team doesn’t have any concerns of obvious growth, which is a great news, between hold on Jane's selumetinib this past year and lowering the dose.
While we're waiting to talk to the surgeons and for the plexiform volumes we'll continue on Jane's current dose of medication and plan a return trip and repeat MRIs in the fall.
NF Update:
Meanwhile, NF Awareness Month going strong! The Children's Tumor Foundation really outdid themselves with their campaign this year. Their theme all this month is "Make NF Visible", and they have done an outstanding job bringing it all together, especially during a pandemic. My favorite parts (so far) are the Make NF Visible Portraits and the upcoming NF Zoomathon scheduled for May 17 (World NF Awareness Day).
For the portraits, they partnered with award-winning photographer Craig Warga, whose son also has NF, to look at the different ways NF can affect a person’s life, even when no one else can see. They paired people with NF who have manifestations that can be seen with those whose affectations can’t be seen, as a way to highlight the visible and invisible ways NF makes itself palpable in a person’s life. They comment, "Life with NF can mean living with things like brain tumors and café au lait spots, neurofibromas and learning difficulties, loss of hearing and excruciating pain, successful surgeries, failed clinical trials, physical scars, emotional wounds, cross-country networks, unspoken understanding, and unbroken bonds." You can view them below or at the CTF website: https://www.ctf.org/understanding-nf/make-nf-visible
For the portraits, they partnered with award-winning photographer Craig Warga, whose son also has NF, to look at the different ways NF can affect a person’s life, even when no one else can see. They paired people with NF who have manifestations that can be seen with those whose affectations can’t be seen, as a way to highlight the visible and invisible ways NF makes itself palpable in a person’s life. They comment, "Life with NF can mean living with things like brain tumors and café au lait spots, neurofibromas and learning difficulties, loss of hearing and excruciating pain, successful surgeries, failed clinical trials, physical scars, emotional wounds, cross-country networks, unspoken understanding, and unbroken bonds." You can view them below or at the CTF website: https://www.ctf.org/understanding-nf/make-nf-visible
Jane’s quote hit me in the heart: "I think it is important for people to know about NF because you don't know what someone might be going through if they have NF and I feel it is easier to talk or comfort people if they know what I am talking about."
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| MY HEART <3 |
The Zoomathon to benefit the Children's Tumor Foundation is being hosted by actor/producer Jonathan Sadowski and will bring together well-known actors, musicians, athletes, comedians, chefs, magicians, celebrities, and NF Heroes (including JANE!) all combining forces to make sure the world knows about neurofibromatosis and TO MAKE NF VISIBLE! It will be live streamed at www.ctf.org/heart, with links provided to view on Facebook, YouTube and closed-captioned on Zoom. You can watch a preview here! Please tune in between 7-9pm (ET) on Sunday--it's going to be so exciting!
