Saturday, September 26, 2009

Next week

Mandy has been feeling good since we got home from the hospital, which is good, in the vast majority of ways. In a few ways, it is almost more concerning. If the event on Sunday had led into a bout with a stomach bug or the flu or whatever, it would have explained a lot. But, she feels fine.

I have spoken with the NF clinic in Orlando, where she was just seen about a month ago. At the time, they expressed a great deal of concern about the left parietal lobe area. They felt like it was going to definitely require intervention at some point.

I wasn't quite prepared for that "at some point" to be quite so soon.

The docs over there want a second MRI and feel at this point that most likely a biopsy of that area will be in order.

So, we have several appointments next week, over to Orlando for an MRI, Tampa for what is supposed to be her last chemo before a break, back over to Orlando to have a round table discussion with all the docs to come up with the proper plan.

It will be a difficult week ahead.

As always, we are so thankful for all our friends who continue to amaze me with just how much, how willingly and how often they are willing to step up and help however needed. When I sign off on these posts with "Love to all~" know that those are not just words. It is a statement of just how blessed you make us feel. You all show us so much love and we are truly grateful for each and everyone one of you. Please know we love you all right back.

Love to all~

Tuesday, September 22, 2009

Home. Do we have answers? Not sure...

We were discharged this afternoon after completion on the EEG and after the MRI report came back. I am so stupid tired that I am just going to make this very quick, unfortunately I can't make it to the point.

Here's what we know:

The bizarre bloodwork spike....
The docs feel this could be indicative of a seizure and the bodies stress response to it.

The EEG was normal, which I am told decreases, but does not rule out seizures.

The MRI was essentially stable. Extensive myelin vaucoulization, left parietal
lobe still noted that enhances with contrast, bilateral optic gliomas
still noted with intraorbital components.

The CT did note the myelin vaucoulization, as well as noting the left parietal lesion.

Thing about the two radiology studies, the CT did pick up the left parietal lobe area, that coupled with the fact that it is enhancing on MRI makes it almost definitely a structural mass, meaning a 2nd tumor.

What happened on Sunday behaved very much like a seizure or like the
events back in 2005 that were never diagnosed. We searched for a year for an answer to those episodes. We went to Dallas for a doctor. We went to Birmingham, AL for a doctor. We spent countless hours in doctors offices and inpatient in the hospital. And no one could ever figure them out. It was heartbreaking and incredibly debilitating to Mandy. They were happening several times a week at the worst point. Eventually the rule became, as long as she wasn't unconscious for more than 30 minutes, don't bother going to the ER. They didn't know what to do to help her. We hit 29 minutes once. It was pure hell. And the longest 29 minutes of my life.

As for Sunday, she was perfectly fine before the episode and fine within several hours after, and has not had another episode since. However, frankly, we are not optimistic that another one won't occur. Given her history, the doctors certainly aren't optimistic that it was a one time event either, and were very honest about that. I was sent home with the eerily familiar instructions of 2005, "Call us when it happens again." They were not certain they were seizures, but were not certain they were not either. They did not want to do anything further at this point as far as treatment goes for the potential seizures, or not.

When I got home I called her regular neurologist and gave him the run down of test results. He has been her neurologist since 2003 or 4...I can't remember for sure, but a long time. He was her primary through all the uncertainty back in 2005. He was 110% certain that Sunday's event was a seizure. The convincing factor for him? The crazy spike in white count and ANC in the bloodwork. He is so sure he was ready to call in a prescription for seizure meds right that minute.

I also spoke with my friend, who was also Mandy's geneticist back many moons ago when we still needed a geneticist. I tease her that she is a one stop shop for me as she happens to be married to a neurologist. She concurred that she was certain it was a seizure.

So, what to do? Seizure meds or not to seizure meds? We are thinking on that.

The fact that her head turned to the right during the episode on Sunday and that the area in the left parietal is almost now 100% certain to be a second tumor does concern me greatly. The left side of the brain controls the right side of the body. So,a head turn to the right would stem from the left side of the brain.

She only has this week and next week left for chemo and then she is done. For now.

We have to remove the chemo to know if that area will do anything. We can't leave her on it indefinitely. I get that. And I agree. But, to take her off chemo, especially with this development scares the ever loving crap outta me. When we remove the subduing factor of chemo will that tumor take off and grow like crazy? No one knows.

That, among other reasons is why we are so careful about how we present this "end of chemo" to her. It's a break. We hope the break last a long time, forever even. But, we have to temper that with a degree of realism.

It probably won't.

The fact is, Mandy has neurofibromatosis. She lacks a tumor suppressor gene. Her body doesn't know any better now not to grow a tumor than it did before. The optic glioma is still there and now this 2nd tumor is there. And with the addition of the potential seizures..... it's a chemo break. I just hope and pray a break is the right thing to do. And that it lasts.

And now, I am beyond exhausted. I am not even entirely sure that this post is the least bit coherent. If not, I apologize. If you have a question I didn't answer or I didn't answer coherently, feel free to ask. But, in the meantime, I think I have amassed a total of 4 hours sleep since Saturday night. So, I am going to bed. Have to be up at 5 to get two kids to school and one to chemo. Ronnie comes home on Friday. Zachary starts his audition process for the 5th grade musical tomorrow. He desperately wants a big role. Send him some good mojo, if you would. Alannah had seatiing auditions at her youth orchestra last night, that she actually managed to make it to, due to some wonderful friends. Good mojo for her too. It is so hard to have our family scattered to the winds like that. I was so happy to be able to hug all three of my kids tonight. They have been worried and scared, but rise to so much more of a challenge than they should ever have to. They are amazing kids, all three of them and we are so blessed to have them.

A million thanks to a million people for all the love and prayers and help with Alannah and Zachary and food and visits and and and the list goes on and on. We are oh so blessed to have you all and so incredibly grateful.

Goodnight and

Love to all~

Monday, September 21, 2009

It's after midnight...

It's 12:07 am in Room 261. Mandy and I are both exhausted. She JUST fell asleep. Like minutes ago. Hospitals are not terribly conducive to rest and relaxation.

This is where things stand today, tonight, this morning....whatever.

I have the CT report in my sweaty little palm. It reads

1. No acute intracranial process identified.
2. No evidence of intracranial hemorrhage.
3. In this patient with history of neurofibromatosis, change of myelin vacuolization part as read in correlation with prior MRI of 06/25/2009.
4. No convincing new abnormalities seen.

Computed tomography of the head was preformed without the administration of intravenous contrast material.

In this patient with history of neurofibrmatosis, optic pathway glioma and extensive myelin vacuolization as seen on prior MRI's, the most conspicuous CT signal abnormalities are seen with low attenuation identified bilaterally medial basal ganglia/globus pallidus.

Left parietal lesion only faintly visualized on this CT study.

There is no evidence of acute intracranial hemorrhage.

There is no shift of the midline structure."

We had the MRI today. And though I looked at the disc and have my amateur radiologist opinion, I will wait until the actual professional report to post those findings. She is hooked up to the EEG now, and will remain so for a while, at least 24 hours, possibly longer.

Counts were back to to normal for her today ANC 1100, WBC 3.36, platelets 292. Which makes that whole bizarre increase yesterday even more bizarre.

Hopefully, we will have a better idea tomorrow. I remain terrified that it will be a repeat of 2005 and we won't know what's going on. But, I am equally terrified that they will diagnose something that would be equally or even more scary.

I want to just take a second to throw out some thank yous. It truly does take a village to raise a child, but lemme tell ya, you really have to lean hard on your village in times like this. And boy oh boy, does our village step up.

Charitta and family who are housing and caring for Alannah, the Coopers and now Anne who are housing and caring for Zachary. Jane and Greg and gang who are housing and caring for the dogs. Kim and Mary Ann who went all kinds of out of their way today to make sure that Alannah didn't miss seating auditions at youth orchestra tonight. Amanda who came to visit bearing a mocha for Momma and a Webkinz and sticker book for Mandy. Angela who came to visit bearing gifts and food and laughs. Kate who, with the help of several Facebook friends came and dropped off a couple of perfect mochas for Momma, a pizza for a starving Mandy and a ton of pastries from Starbucks. A ton of texts and phone calls and messages letting us know that so many people are praying for and loving Mandy, and all of us.

Mandy summed it up when she said, after being NPO(without food or drink) all day long and a sedated MRI and while she was hooked up to the EEG machine, "You know, it was a pretty good day today for being in the hospital."

We are blessed and very thankful to be surrounded by the most amazing friends and neighbors and adoptive family. We love you all.

I am going to try to nap. Will update again tomorrow when I get counts and MRI reports.

Love to all~

Update from Room 261, again

We had a neurology consult this morning. She believed it could have been a seizure and wanted an EEG. Oncology also came in and said they wanted an MRI and agreed with the EEG. Her counts are all back down to normal(for her) range again. The white count was back down to 3.36 at 4am today from 6.0 in the ER last night. ANC was back down to 1100 from 4620 last night. No one is quite sure what to do with that. The ER doc had told me that sometimes a seizure can falsely elevate the white count. But, I don't know how common, or even accurate, that is.

So, the plan as it stands right now is this: She has been put on NPO status(no food or drink) for the next 4 hours. They will first do an MRI. The CT they did last night would only show things like fluid or pressure, not necessarily tumor growth. The MRI will show that, if there is any to show, which hopefully there isn't.

After that they will hook her up for an EEG for about 24 hours. The neurologist will then review that and determine if she wants it for an additional 24 hours or not.

She is still feeling fine, is bored out of her head and now hungry. Hopefully, these tests will give us something to go on. I am hoping maybe the really bizarre bloodwork will give them some ideas...but, I don't know. I am just really hoping and praying this isn't the start of something like what happened back in '05 that no one was ever able to figure out, diagnose or treat.

At this point, I am just hoping for answer and not to have that nasty cycle she had back that start up again.

We love our hospital and doctors, the one thing that is a bummer is that there are no private rooms, even on the oncology floor. So, we are about to be joined by a 3yo roommate.

That's about all I know for now. Will update later when I know more.

Love to all~

Sunday, September 20, 2009

Update from Room 261

A room actually opened up on the oncology floor. So, we stayed. The nurses on the floor are leaning toward seizures. Her bloodwork is all out of whack.
ANC 1920(oddly high), Platelets 339, WBC 4.95(oddly high)

ANC 1120, Platelets 279, WBC 2.36 (much more normal on all account)

ANC 4620, Platelets 272, WBC 6.0 (freakishly high on everything, except platelets, which are a little low from her norm)

We haven't seen number like that since she has been in treatment. EVER. Apparently, sometimes seizures can elevate the white count. Who knew? Something to do with the stress it puts on the body, which makes sense, I suppose. So, we will know more tomorrow when they do her counts. I am told the anti viral she was on would not increase those.

She is feeling 100% tonight. I would be happier if she were sick, frankly. Because this came on so suddenly and left so completely it is more concerning for what it COULD be then if she had, say, the stomach flu.

So, we are here for tonight. Suspect at least an EEG and possibly and MRI also will be ordered tomorrow. CT today showed no acute changes. But, CT's and MRI's don't always show the same thing. More accurately, and MRI shows more.

So, for at least tonight and part of tomorrow, we are residents of Room 261.

Wonderful friends stepped up and took Alannah and Zachary as Ronnie has to leave for Canada tomorrow at like 4am or something crazy.

That's about all I know for now. Thanks so much for all your prayers and love.

Love to all~

Update from ER

Tonight's broadcast is coming to you from the ER of All Children's Hospital. So, we are going to take a "the facts, just the facts approach."

So, Wednesday went off fine, except for the fact that her counts were kind of wonky. Everything was falsely high, and seemed out of whack. Got chemo, came home, all was fine.

Thursday I get a call from Mandy's teacher that a little girl in her class went home with what was presumed to be the flu. So, Friday morning I called clinic and said she had an exposure, as the plan had been to put any of the immune suppressed kids on Tamiflu if they had a direct exposure.

We get to clinic and she is running a low grade fever. Upon further examination of a sore she had been sporting on her lip for several days it is believed she had/has a herpes infection. Came home with anti-viral. Fever stayed low grade through Saturday afternoon, but she felt fine.

Sunday, she woke feeling fine, acting fine, still no temp. She was in her room and came out with zero color at all and said her head at a 9 on a scale of 1-10. She NEVER complains, so that was a huge statement for her to make. She was also complaining of tummy upset.

She laid on my lap while I paged the oncologist. While she was snuggled into my lap she jerked her head 4-8 times or so in rapid fire form to the right and then threw up.

Her speech was slurred, she was off balance and said her vision was blurry.

The oncologist called back and said to come in. She was very lethargic in the car and sleeping off and on. She threw up one more time on the way to the ER, about an hour away.

By the time we got here, she was stating to improve and her color was coming back a bit. By a few hours later, she seems close to 100%. She is now asking if we can order pizza. This is all scarily similar to "episodes" that happened seemingly endlessly back in 2005 that we never got a diagnosis for.

They did a CT in the ER that showed no acute changes.

I have been given the choice to take her home and follow up in the AM for EEG and possible MRI(but she has an MRI scheduled in a little over a week.) I have spoken to her neurologist who was treating her back in '05 with the episodes no one could figure out. I wrote about those here before click here to read that post.

He said to call at 9am at the office and he will try to get an EEG right away. MRI....we will have to see. If there was anything hugely significant hydrocephalus, significant growth, etc. it would likely be seen on the CT. With an MRI pending in a little over a week, they may just let that one stand.

So, we are sitting in the ER and trying to decide if we should stay here or go home and follow up tomorrow. The good news is she seems to be feeling fine. Counts are good, white count is 6.0, which is normal for the non-chemo population but oddly high for her. It was 2.36 on Friday. That could be from the herpes infection, or possibly even the antiviral, I believe. A white count can be falsely elevated following a seizure too, I am told by the ER doc.

So, I am going to sit on it for another hour or so and then re-asses where she is and see if we are better going home or better staying here. If she has another episode, I would like it to be here, where they can see, assess, medicate if needed. But, I don't want to hang out in an ER just for the heck of it. They don't have a room on the floor, so we would likely be in the ER for the night. Not helpful for her getting some rest.

Ronnie is leaving for Canada in the AM... Kids and dogs have already been dropped off with wonderful people who will watch out for them.

So, there ya go. Will update more later.

Love to all~

Monday, September 7, 2009

The past week

We have had a really busy week with medical appointments. Chemo Wednesday and a trip to Orlando on Thursday to see a group of doctors who are now running a Neurofibromatosis clinic. We got a lot of good information and though some of it was not what we wanted to hear, we feel good about their knowledge of NF and brain tumors.

We went to the American Cancer Society Families R.O.C.K weekend in Orlando this weekend. We came away with some valuable information to discuss with Mandy's medical team. Plus, we got to hang with our buddies the Dicksons and the Cavanaughs. It was a great event, we learned a lot and the kids had a great time.

A bit of housekeeping, just as an FYI, the restricted accounts for all the patients at the Children's Cancer Center are being closed. Any further donation made to the Center in Mandy's name will not be specifically for her as it has been in the past. The donation will now be a general donation to the Center. We will be using our Paypal account specifically for donations for Mandy from this point forward. The information appears over under Mandy's Fund on the right of the page. We have been so touched by so many peoples kindness and generosity. Thank you so much. You have truly lifted our hearts with your love and kindness.

Most importantly, a very special friend lost a very special husband early this morning and two very special children lost a very special father after a long battle with Glioblastoma, the nastiest of brain tumors. Please say an extra prayer for this beautiful family. Tyra and Steve shared a love that was the stuff of movies and novels. He was far to young to be taken by such a dreadful disease. I know the gates of heaven were thrown open wide to welcome such a warm, kind and giving soul. Steve Damm, I am honored to have known you. The world is a better place because you were in it.

Please remember to say I love you often. You can never say it, or hear it enough.

Love to all~