On Tuesday morning Rachel took the last 1/2 pill of Trileptal, her anti-seizure medication. Since she is still seizure-free, even after being weaned off the meds, this means that her surgery in December was officially a complete success!

I haven’t posted since January, since there hasn’t been much to say. She’s had a few follow-up MRIs since then, and everything looks great. However, we have realized in the last eight months how much of 2014 she doesn’t remember because of the seizures. It’s a striking example of what scientists say about how memories are not formed instantly, but over a period of hours. Each of those 150+ seizures robbed her of a few more memories. My heart goes out to all of the epileptics for whom a happy surgical outcome is not an option. At least for Rachel, she can re-watch some movies from last year, and at some point she’ll have to learn about Ancient Rome again.

On Monday Rachel starts high school! She has kept her half-shave look, freshly colored a beautiful shade of indigo for the start of school.

This will be my last post on this blog. Thank you all for the love and support you have given us throughout this journey! It has meant the world to us.

Rachel’s recovery continues to go well, but her headaches have not gone away. She’s off the prescription meds, but she still needs Tylenols all day. She went back to school last week and really enjoyed seeing everybody. She had been going stir crazy by the end of the holidays. However, the headaches were worse at school.

This morning we had a consultation with Rachel’s surgeon, Dr. Cheshier. He didn’t like that the headaches were worse at school, and so he instructed Rachel to stay home from school this week, and just go in for half days next week. During that time, he doesn’t want her to do homework. (“No sneaking off to the study, young lady!!!”) She did get permission to take a history midterm this week, since she has already prepared for it and wants to get it out of the way while everything is fresh.

Dr. Cheshier gave us really good news about her tumor. It was a ganglioglioma, which means that it was a completely benign tumor, and conveys no additional likelihood of future tumors. The next consultation is in mid-March, and she will have another MRI shortly before that.

Until then, she is still enjoying her half-shaved look. We even bought some “stubble clippers” at a mall last weekend. Thus BOTH Rachel and I are having new and completely unexpected experiences: she’s hanging out in the Mens’ Shavers section, and I get the pleasure of shaving my daughter’s head. You just never know what life will bring!

Rachel is recovering very well. There were some rough days the first week home, but those seem to be all in the past now. She started going stir crazy after four or five days, but then she had some visitors and some outings, and that has really cheered her up.

The next medical day is January 12, when we have a consultation with Dr. Cheshier (and so I probably won’t post again until then). Presumably he will discuss the pathology of the tumor, so we have an idea of how long it has been there, and what it means for the future. Based on the surgery he thinks it was a low-grade glioma, so maybe it wasn’t a dysplasia after all. But the thing will always be “The Displosion” to us.

For now, we are enjoying our holiday season like never before!!! It’s been a very long time since the three of us got to be together, with no school or trips to the office, for four straight weeks. We are treasuring this time, and our hearts are overflowing with gratitude.

Rachel came home today around noon.  She got a lot better very quickly. Up until yesterday afternoon she was really miserable. Once she was able to take oral meds that totally controlled her pain she started feeling and eating much better. By that evening the nurses were thinking she would be able to go home today.

For those of you hoping to visit her in the hospital, we’re sorry that didn’t work out. You are welcome to visit Rachel at home now if you like, but please call first to make sure it is a good time. She got in bed as soon as we got home, is still pretty sleepy much of the time.

The nurses gave her a nickname during her stay. They called her Hallmark because everything that came out of her mouth sounded like a Hallmark card. We were all VERY happy with everybody at Packard!

Rachel has had a really rough day with pain, but it is getting better now. Until today she was getting all of her meds through the IV. The IV pain reliever worked well, but it only lasted two hours and she had to wait another two hours for the next dose. However, she can now hold down oral medications, and those last the whole duration. When the pain is gone, she is all sweetness and light, full of compliments for the wonderful nurses.

She is slowly starting to eat more, although it’s been a struggle to get her to do so. (She has her dad’s stubborn streak.) She’s also taken some good walks, including up and down a flight of stairs. The only thing holding her in the hospital now is that they need to see her eat consistently, and hold it all down.

Rachel continues to move forward, although it is not always smooth. The good news now is that she has moved out of ICU and into the regular wards. She has done well with OT and PT; late this morning she walked up and down a flight of stairs.

She’s also had a lot of head pain and nausea, and in between doses of medication she just sleeps a lot. Her main goal now is to be able to eat more food and keep it down. So far she has only had one saltine cracker since the surgery.

For those of you wanting to visit Rachel, it is still too early. She has very brief periods, after getting her medication, when she feels good, but most of the time she is still pretty out of it. We will let you know tomorrow if Rachel is up for it then.

She is allowed to have flowers now, in case you have been waiting to send her some while she was in ICU. Thank you for all of your wonderful comments!

Everything continues to go well. The neurologist Dr Porter came by to tell us that there was more evidence, after opening her up, that this surgery was the right one to do for Rachel. She was very pleased.

We also heard a later report from the OR that the tumor was almost completely removed.

About one hour left now — she should get out about 5:15.

Rachel is in surgery now. It is expected to take about 5 hours, so she will probably get out around 4.

Everything went very well this morning. Rachel very patiently told most of the staff of the hospital that she had not eaten or drunk anything that day, had not been sick in any way shape or form for the last few weeks, and hadn’t even considered visiting West Africa. Dr Cheshier came by for a visit, asking “Are you ready to be seizure free?!” (For the record, it looks like her last seizure was on Sunday.) As always, everybody there was kind and efficient.

Rachel was in very good spirits, very happy to be getting the “devil tumor” out of her head. She is wonderful and brave.

I feel like every post I say the same thing, but it bears repeating: thank you all so much for your love and support! There has been a steady stream of good wishes to read to Rachel over the last 24 hours, and every one of them has made her very happy.