August 12

My heart is heavy as I write this update. Many of you have already heard the news we received yesterday was not what we had hoped for. I will try to give you as accurate information as I'm able.

Yesterday,
August 12, Lindsey, Joshua, and her parents went to the oncologist appointment set up by her neurosurgeons office. The oncologist they met with was CJ Blair. When they arrived and were brought into the room The Dr. had his team in the room to participate in the meeting. Joshua said he felt then it was something more serious than what they had hoped for. From the phone calls they had received they hoped they would be dealing with 1 or 2 large tumors that would be able to be treated with radiation and chemotherapy. The news they were given yesterday is that she has 5 large tumors (large being relative here. These could be the size of a dime possibly a bit larger) She has 3 in her neck, 1 in her lower back, and 1 in her shoulder. She also has "innumerable" 'spots' (Josh used the term thousands) down her spine attacking her central nervous system. They are still classifying her tumors as Ependymoma. If any of you looked it up on the internet you will see that ependymoma's are considered linked to the brain. Even though these are outside of the brain they are all being influenced by cerebral fluid and therefore still linked. I'm sure many of you are aware of cancer terms but since there are numerous tumors we know they are malignant. Since they have moved outside the original area they have metastasized. Just so we are all on the same page. The reason the Dr. had his team was to give them the only information they had to compare with which was a case they were involved with similar but 10 years earlier. They were honest in saying this was way above their experience level. The prognosis for treatment was radiation only. Chemotherapy cannot be used. I don't know why at this point. The radiation treatment would be everyday for approx 6 weeks. They only can do the radiation therapy one time, meaning the 1 - 6 week period. There is no second chances. She will lose her hair and the ability to have children. The prognosis was bleak in stating there would be no cure and they could only provide a lengthening of the time Lindsey would have left which could be 1 - 5 years at the outside.

Moving on -
They are seeing the oncologist who worked with Lindsey during her previous tumors on Monday, Aug 16th for a second opinion. From there they are seeing a fertility specialist on Wed. to see about harvesting some of Lindseys eggs. Her sister, Jessida, has offered to be a surrogate mother in the event they choose to go this route. I can think of no greater gift and show of love for a sister than what Lindsey's sister has offered to do. We believe the treatments will begin as soon as possible at the IMED at 53rd South in SLC. They have one of the best treatment centers in the state. The radiation will also be done on the parts of her brain that weren't previously radiated as the cerbral fluid again, is involved. This is dangerous as it is critical that the radiation areas do not overlap as that can cause brain damage. The reason for not retreating with radiation is that a body cannot withstand it and it would kill you.

The good news
-Lindsey has gained 3 pounds this week. I'm sure her weight will fluctuate but based on how thin she is even a little weight gain is good news.
-She has begun taking steroids and it has helped with the pressure she has been experiencing in her brain. The headaches are less frequent and she hasn't been nauseated for a few days now. Hence, the weight gain. The steroids, however, do cause her face to swell. I couldn't see it but she had me feel her cheek and I could tell that way.
-Her eye looked better to me last night. She still keeps it closed most of the time because of the strain but when it was open it was more centered. This is showing us the steroids are doing their job.
-Lindsey is the most amazing person I know with her attitude. We hugged and had our moment when I got there last night and then we sat it aside and talked for a couple of hours. We spoke of life, God, challenges to be overcome, and the future. We spoke of the baby she's dreamed about twice this week and her desire to the see that future. She laughed and giggled when we talked of 'The Office' or a 'Seinfeld' episode. I took their puppies to see them (we've been puppy sitting) and she let them snuggle up to her. It was good medicine.

Joshua is beside her every moment he's able. This hit him extremely hard yesterday. At 25 yr old you shouldn't have to think of a life without your best friend. We spoke for a while alone after saying goodnight to Lindsey, hugged alot, and went and got a shake at JCW's (because anything fattening helps) he felt better by the end of the night.

We have had many emails, texts, and fb comments. We appreciate all the love and prayers heading our way. Please keep it up. I'm sorry to the people who tried to phone yesterday that I didn't answer. After making the inital phone calls to the grandparents and siblings, I was spent, however, if you have any questions, please please feel free to contact me. As a reminder, please go thru me. This has been a huge relief to the kids. I read them every note that comes so your messages are getting thru.

Thank you, thank you,
With much love.
Julie