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Shiloh:
UPDATE 10/22
SHILOH Representing Lionhearts while at St. Jude.
From Shiloh’s Family:
It’s an exciting but nerve wracking time. We check in to St. Jude Children’s Hospital in Memphis on Tuesday (11/1) and will be staying for two full weeks as they complete all of Shiloh’s evaluations. We will have more than 20 different appointments during that time, which feels a bit overwhelming but also it’s a comfort to know that they will be doing comprehensive care for her conditions that she wouldn’t have access to at home. We also are planning some meet ups with other Craniopharyngioma families who have appointments at the same time. Since Lolo’s condition is SO rare (150 kids a year) it feels pretty lonely to navigate. She is excited to meet other kids like her! She’s so brave. After everything she has been through the past few months, the only part she’s dreading about this is the long drive to Memphis she says.
She was very happy when I told her she will get a “Bubble Gum Nose” (laughing gas before IV sedation) again. She loves being put to sleep because she said it’s like taking a great nap. Haha!Adam and I are definitely feeling some fear going into this, especially surrounding her MRI. The swelling in Lolo’s brain should have gone down enough that they will definitively be able to see if the entire tumor was removed during surgery. If it was, then great! We would just be on observation protocol and managing her DI and panhypopituitarism. However, if there is tumor regrowth or if there is residual tumor after surgery, life will become very complicated. We would need to move to Memphis for two months while she completed proton beam radiation therapy 5x a week under sedation. Never mind the number one concern of long term physical side effects of this on my baby’s body, the logistics of us being 6 hours away for two months is daunting. That’s a lot of missed work for us both. Missed time and events with our other 3 children. Splitting extremely emotional duties when we need support. Missed holidays and birthdays. It’s just a lot to have hanging over our heads as a possibility right now. We are trying to have faith she won’t need radiation but we need to emotionally prepare for that as a possible outcome.My Mom and Adam’s parents will be taking turns caring for the boys for the two weeks we’re gone. My dear friend Rachel has set up a Meal Train for them while we’re gone to help. 
https://www.mealtrain.com/trains/1nky33
It’s an exciting but nerve wracking time. We check in to St. Jude Children’s Hospital in Memphis on Tuesday (11/1) and will be staying for two full weeks as they complete all of Shiloh’s evaluations. We will have more than 20 different appointments during that time, which feels a bit overwhelming but also it’s a comfort to know that they will be doing comprehensive care for her conditions that she wouldn’t have access to at home. We also are planning some meet ups with other Craniopharyngioma families who have appointments at the same time. Since Lolo’s condition is SO rare (150 kids a year) it feels pretty lonely to navigate. She is excited to meet other kids like her! She’s so brave. After everything she has been through the past few months, the only part she’s dreading about this is the long drive to Memphis she says.
She was very happy when I told her she will get a “Bubble Gum Nose” (laughing gas before IV sedation) again. She loves being put to sleep because she said it’s like taking a great nap. Haha!Adam and I are definitely feeling some fear going into this, especially surrounding her MRI. The swelling in Lolo’s brain should have gone down enough that they will definitively be able to see if the entire tumor was removed during surgery. If it was, then great! We would just be on observation protocol and managing her DI and panhypopituitarism. However, if there is tumor regrowth or if there is residual tumor after surgery, life will become very complicated. We would need to move to Memphis for two months while she completed proton beam radiation therapy 5x a week under sedation. Never mind the number one concern of long term physical side effects of this on my baby’s body, the logistics of us being 6 hours away for two months is daunting. That’s a lot of missed work for us both. Missed time and events with our other 3 children. Splitting extremely emotional duties when we need support. Missed holidays and birthdays. It’s just a lot to have hanging over our heads as a possibility right now. We are trying to have faith she won’t need radiation but we need to emotionally prepare for that as a possible outcome.My Mom and Adam’s parents will be taking turns caring for the boys for the two weeks we’re gone. My dear friend Rachel has set up a Meal Train for them while we’re gone to help. https://www.mealtrain.com/trains/1nky33
We will definitely keep everyone updated about our St. Jude journey.
WHEN IT BEGAN
Touching Story from her mother.
I’m typing this from the back of an ambulance headed to Vanderbilt Children’s Hospital. I wanted to ask for prayers for my baby girl. The last 24 hours have been the most difficult of our entire lives. I will try to keep it short but so much has happened.
Shiloh hasn’t been feeling well for nearly two weeks. She was on antibiotics for strep for 10 days but was still feeling incredibly tired, had no appetite, and complained about a bad headache off and on. Wednesday we took her to TC Thompson and her little body started decling quickly. She began losing vision (which is pitiful and so scary for her), vomiting and having a hard time keeping herself awake. What we thought were lingering symptoms from a strep throat infection actually ended up being symptoms of a large mass in her brain that runs the entire length of her head, right down the middle. The doctors were pretty confident the mass was cancer and overtly told us that. The mass is causing her brain to swell. We spent last night in the PICU watching carefully for any signs of increased swelling and stroke. She was stable through the night and about 10 am they took her back for an MRI of her brain and spine. She was fully sedated and the process took 3 hours.
While she was under, we had visits from the oncology department, a social worker who works with cancer patients and their families and the neurological department who were all doing their best to prepare us for the journey ahead. Lots of questions, lots of tears as the weight of everything was sinking in.
A team of neurologists from around Tennessee took some time reading over the results of the MRI, and to our absolute shock Dr. Miller informed us that his team is now fairly certain Shiloh’s mass is benign! They believe it is something called a Craniopharyngioma and that it has been in her brain for quite some time, slowly growing up to this point and is now blocking fluid in her brain causing swelling.
This is not good.
But it is so much better than all the professionals expected, and we have so much gratitude for that.
The neurosurgeons in Chattanooga agreed that the best course of action is to send Lolo to Vanderbilt to a surgeon who can remove the mass and the fluid completely through her nose, hopefully meaning the mass won’t return and she won’t need radiation. If we stayed in Chattanooga, the option was a more temporary solution and a permanent drain in her head.
Shiloh will likely need occupational therapy and physical therapy when this is done and her vision may not return to normal for a while.
We’re about an hour out from Vanderbilt where we have a bed in the PICU waiting and we will wait to hear what’s next. While we wait on the surgery, please pray specifically that her brain does not swell any more, she will not have seizures, her pain is minimal, and that there are no complications. Pray that she will not need radiation and they can completely remove the mass through her nose as planned. Pray the pathology shows that this is indeed benign and will have no long term effects on her health. Pray that my baby lives a long and happy, healthy life. And pray for our boys as they have to navigate this with us. Life is so unfair and so fragile, but today we are thankful for hope.
This girl has absolutely amazed us with her bravery and so I don’t want to show you the sad pictures. I want to share a picture of her when she first woke up this morning, bright eyed and bushy tailed and so happy to have a lap full of new toys and asking to hurry up and have brain surgery so she could have a chocolate donut with sprinkles. No big deal, right?
She had two donuts after her MRI.