It looks like we are coming home tomorrow. Yay! So tumor board met today, the pathology shows that it is a pilocytic astroctoma. Not as rare as the other, but still rare.
We still don't know if her pituitary gland is working. And she will have lots of follow up appointments here over the next few months. Another MRI in three months. She is also having some small seizures that neurology should be meeting with us about.
Now we just need to get with the school to figure out what she needs there.
Btw, she had another rough morning. She started off the day throwing up. Yuck! I think she waited too long after her meds to eat. Right after she threw up, she ate. Weird. And of course it was bacon, sausage and toast. (I am seriously considering making using bacon as a bribe at home. It is obviously highly desired.) But then she slept for the rest of the morning. She did get up about 11am and have a SHOWER! She loved it. We were even able to wash her hair as long as we didn't scrub the incision area (it has about 100 stitches...not joking. Really 100 stitches). She was complaining about an area to the back of the top of her head that had some dots of blood. She said it was really sore. I asked one of the dr's and she said it is probably from staples. To ensure the area stays clean and sterile they put a plastic drape over her hair and secure it with staples. Wow, interesting. I would take staples over shaving half her head or all her head any day. They are thinking we MIGHT can come home on Thursday. But it depends on her progress. And even if we do the next month to month and a half will be LOTS of follow up appointments back here. Therapists, Opthomolgists, Oncologists, Endocronologists, Neuro-Surgeons too. (and I probably spelled them all wrong...)
Avery had a rough morning. She was seeing double...not good. And she had a headache that wouldn't go away. They took her in for a cat scan and it came out fine. Oh she also had a low heart rate and 99 degree fever. She hardly ate any breakfast...no bacon. But for lunch she got pizza, chicken nuggets and fries. She ate it all. She had a good afternoon and Grandpa Dave came and sat with her so i could get out...into the sunshine.
AND I am sending this from my new nook. Thanks to my AMAZING friend Kathy. I don't know how I am so lucky to have such great people in my life!
The adrenaline of the first few days in a hospital were wearing off. So I came home with the other kids and my in-laws. For the first time (ever) I was happy I didn’t wake up to sun. Because it would have had me up before 7am. So it allowed me to sleep in. Yeah!
For those of you who have ever had a baby, you know about that “crash”. The first day you keep waking up just to see that baby, make sure it wasn’t a dream. The second day you keep waking up just to make sure it’s still breathing. The third day (usually when they send you home) you sleep so deeply you don’t hear the baby the first time. You are SO tired. That was the point I was out. So I am really happy to have had eight, blissful, uninterrupted hours of sleep. And a shower…a full good shower that I was able to scrub the hospital smell off.
As much as everyone wants to see her…she is really out of it. Plus she is still in ICU. They discourage visitors. But you can send an e-greeting. Click here. You can also send her stuff from the gift shop, however she had some great drugs right now and she can’t get flowers or balloons in ICU. Better yet, do something for her brother and sisters. They are the ones totally aware of what is going on. And prayers. They are amazing and do more for us than I can express. Trust me we have angels both here and on the other side that have been hard at work on our behalf. We really are so blessed.
Oh btw, one of her neuro-surgeons said after her MRI yesterday that they got about 60% of the tumor. But it was the part that was effecting her vision. The rest might die off (hopefully) with that main part gone, or might begin to grow again. But it is very slow growing and may not effect her for years if ever. They will just have to monitor it and see.
I am home for the night, so I thought I would share some pics…they are graphic so if you are prone to queeziness, don’t continue. And she is VERY irritable. Probably the steroids. Luckily her dad can deal with her tonight. Because I am going to SLEEP!
poor eye….obviously asleep
Avery will wake up and start asking questions
Avery: did they drill the hole?
Avery: what time is it?
me: I will tell her the time
Avery: Can I have bacon?
me: no not yet
she gets upset
Avery: when can I have bacon?
She also would ask other things about where we are, what day is it, where is Nathan, ect.
I would go over it all. She would get a headache, and push her button for more meds, go to sleep and in a few hours we would do it ALL over again. But she is getting more responsive and her site seems to be getting better. Althought that right eye (her good one) is still swollen shut and will be for a few more days.
The one surgen stopped by. After reviewing her scans they got 60% of the tumor and where it is left are areas they couldn't get to or wheren't critical. They will probably just watch her closely over the next few years and then maybe with an annual MRI to watch for any changes. If there is, probably another operation. They still feel like this can't be treated with radiation or chemo.
Thanks again for everything you all are doing!!
They told me her biopsy along with post-op stuff should take about 2 to 2 1/2 hours. So at 2:30pm I was paged back to neuro-surgery. The Dr. (Dr. Ojemann...love him) said "she's ok". That is what I needed to hear. Then came the but...we have to make some other decisions..right now.
It isn't an optic glioma, therefore cannot be treated with chemo or radiation. At that point they really didn't know exactly what it was, just that it wouldn't respond to those treatments. And with the other Dr.'s accessment (from pre-op) her vision was getting worse. So we had two basic options. 1# while she is under, go back in and operate and get as much of it out 2# wait a few days and see if we can get another biopsy. But his schedule was open to do the surgery...right now. AND she might be blind in a few days. So we went with option #1. Right now to a surgeon, means in two hours. They expected the surgery to take 4-6 hours. We would get updates every 2 hours or so. It would do like this..
"Is this Avery's mom?"
"ok this is nurse so and so in the operation room. It is going great. She is doing fine. But it is going to be a while. We will let you know in about another 2 hours"
This happened 4 times. And 9 hours and 30 minutes later (you can do the math, it all adds up to very tired) she was out. They took her ventalater tube out and woke her up. She was obviously very groggy. But she looked better than I expected.
Since then I THINK the name of her tumor is a Gangliositoma??Spelling anyone??
they think they got 80% of it, but need an MRI, which they will do probably monday.
They were right next to and around the pituatary gland. So they are watching her closly. Espeically her urine concentration. She will most likely be here a week most of the time in ICU. But all can be handled with meds if her body doesn't work it out on it's own.
She is very cranky when in pain.
Her right eye...the only one she could see out of is swollen shut and dark purple (I will post pics later)
Dr. Ojermann had been operating since 6am and at 4am (next day) he was still bright and chipper. I wasn't so much.
We are all very tired. But SSSSOOO grateful to all the amazing family and friends who have put her name in the temple, fasted, prayed, sent thoughts and cards.
I know some of you are wanting to help out. You can post a message or call Emily Wall (in my ward at home). She is helping arrange stuff. And my father-in-law (who had a similar tumor in almost the exact same place) and mother-in-law should be here tonight. Bless them too.
So we spent a LOT of time today in Seattle.
Here is what we know. They don’t really know what it is. It appears to be an Optic Glioma. But it doesn’t fit the bill 100%. It still could be a Hammertoba (That probably isn’t the correct spelling). Or something else. So tomorrow at 9:30am they are going to do a biopsy. First to figure out what it is because second, they don’t feel like they have the time to wait and try something that doesn’t work. Her sight has been effected drastically and they don’t want it to be further damaged. SO, hopefully Monday we will have the results. With either of the above options radiation or chemotherapy look like the best options.
With radiation: Her pituitary gland would be destroyed. So she would be on meds for that the rest of her life. It would start being effective right away, so more of her site would/could be saved. It would cause some damage to the rest of her brain, mainly memory and reasoning.
With Chemo: It takes longer to become effective. She has to go in once a week for a year for the meds. They would insert a devise into her chest that allows them to put the drip into rather than doing an IV every week. The medicine only effects the tumor, nothing else.
To us it comes down to brain vs. sight. Right now brain wins. We will see
Either way, she will loose her hair.
The school is helping us set up a 504 plan for her. This will help with tutors, and extra aids they might need to help her.
We will keep you updated as we go……
Well, I was really proud of myself yesterday. I had gone out of town last-minute with my husband. He was scheduled for a business trip and we were able to score some last minute tickets with frequent flier miles. It was a great few days, but I knew we only had a few days until school started when I got back. So, we returned and I got busy checking clothing status and making sure any missing items were purchased. Making sure lunch stuff was available to take, fees paid, etc.
I had promised my 2 youngest that I would take them swimming on Monday for their last day of freedom. We had missed the school open house last week, so I took them over to the school to make sure we knew who their teacher was and where to go before our swim.
When I pulled up, I saw several kids playing and I wondered if the middle school had started a day early. Then, we went inside the school and wouldn't you know it, my kids were missing their first day! The rest of the school district we live in started school today, the 23rd, but their charter school had decided to start a day early and I had missed that crucial date!
Luckily, I didn't have anyone distraught over it, we had a good laugh and my kids were thrilled to go swimming while their friends were in school.
Where is my mother of the year award?
We had SUNSHINE…two days in a row. Warm sunshine. Like 80 degree sunshine. If you don’t live in Northern WA, you have NO idea how rare that is this year. Or how good it feels. It was WONDERFUL!!
I think I need to clarify a bit about Avery’s sight. She can see almost 20/20 straight on. It is her peripheral vision that is affected right now. If you stand on the left side of her, she can’t see you. If you stand basically anywhere but right in front of her…she can’t see you. Or she might see two of you, even if you are right in front of her. It’s like looking down a straw all the time. And the left straw is tiny. The right is more like McDonald’s size.
But she is getting around really, really well. At home she is coloring, getting herself cereal, mopping and fighting with her siblings. Basically all the normal things. And she even wrote and gave a talk for Primary (church class for kids) yesterday that she had been assigned before the sight issues began. She can’t cross a parking lot alone, and she can’t get around in crowds of people by herself. But other than that, she is working it out really well. She can’t vacuum, but she can do dishes. She can’t ride her bike, but she can roller skate. She is finding the things that she can do. Even my hubby commented on how she is the one that we could never say “you can’t” to. She would find a way. So she will. It might take her a bit more time or effort, but I don’t see her sight stopping her if she puts her mind to it.
Thank goodness the stubbornness is good for something.
Okay, so I have spent the last 29 hours in an adrenaline rush only a mother with a seriously ill child knows. If you know this…I am SO sorry. But you know, and you never forget.
So Avery woke up Thursday morning and was (I thought) being a typical weird eight year old. She said she was seeing two of some things and kept crossing her eyes. Whatever. But then she kept saying and started walking around the house like she was blind. Okay, I started to get nervous. Then I called her Pediatrician, who wasn’t in. But the nurse suggested going directly to the ER. Now I was TOTALLY panicked. I emailed her Neurologist who now lives in Portland, OR. He IMMEDIATLY sent his phone number. You know things are scary when they send a phone number for you to call…right now. I did, he said take her to the Children’s ER in Seattle. He was going to call in so they knew she was coming. So at 11:30am I jumped in the car with Avery and made the 90 minute drive. NOT stopping for food. NOT taking anything for overnight. TIP: If you are headed to a ER, get food on the way and take a change of clothes…just in case.
She was admitted, at 1:30am! So at 1:40am, I left my darling in the nurses care, drove home, slept till 5am, got clothes, makeup and another book (since I read the one I had the first day in the ER) and headed back to Seattle. I needed to be there by 7am when the Dr’s had their first rotation. I made it. And then had a 30 minute nap.
She saw Ophthalmology, Neurology, Neuro-Surgery and Neuro Oncology. Then they all had to get together to decide what do to.
Currently she has about 5% site in her left eye and about 50% in her right. They have a Brain Tumor Board that meets on Wednesdays. She is on the list for this weeks meeting. Basically it is a bunch of doctors that look at all the information and decide what is the best course of action. So we have an appointment for Wednesday afternoon. She most likely will have chemo ad/or radiation. But we really don’t know yet.
We will keep you updated. I am going to sleep for at least 8 hours…
SO…if you are lucky enough you have your kidos already back in school…reward yourself with some carbs…in the form of this pasta salad.
If you are like me….and have almost THREE WEEKS til they go back….console yourself…with this pasta salad. Either way…carb it up!!
I got this recipe the same day we did that over the top fireworks-yep the 4th of July. My friend Dawn and I decided instead of dessert we would have more pasta…then they brought out that ridiculous strawberry cake (that I just realized I didn’t post…it’s coming). So yes, I ate both. And did more cardio the next day to attempt to burn it off.
Gorgonzola and Grape Pasta Salad
One box Penne pasta
1 lb. grapes washed and taken off stems
1 cup pecans-toasted
4 green onions chopped fine
1 cup gorgonzola (I only had feta which worked just fine)
1 cup mayo (Best Foods is my choice)
Cook pasta according to directions. When done drain but don’t rinse. While pasta is warm add in pecans, onions and grapes. Toss. Add in mayo and toss to coat. I add in mayo a 1/4 cup at a time just until dressed (I don’t like too much mayo, but do as you like). Let cool 10 minutes and add in cheese. Toss again. I LOVE this warm, but you can chill first if you like. Make sure to keep this in the fridge (if you don’t eat the whole bowl the first day).
So I was out of my tinted moisturizer. It is the Mary Kay kind. I liked it. But honestly, how often to I need spf and extra moisture here….almost never!! So I decided to try something new. Kandee Johnson has this tutorial on her site that has totally changed the way I think about my make-up. Foundation in particular. She recommended Forever Make-ups High Def foundation. (You can get it here..or at Sephora). It was a bit more than I would spend…but really…I LOVE this stuff. It is AWESOME. I am shade 120. Just in case you are wondering. And yes, I love to put in on with my fingers, right after my shower. While my skin is warm. It seems to really spread on more evenly. And it isn’t too heavy.
So if you are in the market for some new foundation…I TOTALLY recommend this one. And Kandee’s tutorial.
I am BACK! I have tan lines and lots of great ideas for you!!
First homemade laundry soap.
Ok,ay, I know, I know. I was skeptical too. My mom had made some and was using it. But my youngest has VERY sensitive skin. And I have kids. That stain EVERYTHING. But then….my mom had a pair of white jeans. While driving she opened a red bottle of juice. Apparently it was carbonated. And sprayed everywhere…on her white jeans. Then she took them off and forgot about them until the next day. So not only was it red on white jeans, but it had been 24 hours. She put this homemade soap on it…AND IT ALL CAME OUT! Okay. Now I am impressed. VERY impressed.
AND it is easy. AND it is cheap. So today I am going to make some.
A 5 gallon bucket
1 cup of laundry soap that you already are using (any kind)
1/2 cup Borax (in the isle with the laundry soap)
1 bar Fels Naptha (it’s a bar soap that you can find in the laundry isle of Wal-mart or if you can’t you can find it on line.
Makes 10 Gallons (Seriously!!)
- Fill 5 gallon bucket 1/2 full with hot water.
- Grate the bar of Fels-Naptha in large stock pot into 4 cups of water and dissolve over medium-low heat.
- Pour melted soap, borax and 1 cup of soap into bucket with water.
- Fill to top with HOT water and stir. Cover and let sit overnight
- Next day, stir again to mix thoroughly. It will be thick like Jell-O.
- Take this soap from 5 gallon bucket and mix 1/2 and 1/2 with water to use. Mix every time before you use since it will separate. In high efficiency machines use 1/8-1/4 cup per load. For stain remover, use right from 5 gallon bucket and let sit for 5-10 minutes.
Be prepared to be AMAZED!!!
I also feel so ready for some good projects to share with you. Fabric paint, sewing and of course recipes!!
Check back after the 12th (unless Amy and/or Jenny make a post before then. Amy's closet it AMAZING. I can't wait for you to see it!!)