Friday, November 19, 2010

I have been waiting to write until all of our second opinions are in, but we are still waiting on a couple.

I met with Hannah's neurosurgeon on Tuesday. He is such a smart man, great doctor and Dave and I really trust his opinion. He said he doesn't believe we are dealing with a recurrence. {{{breathe now}}} He said he typically sees medullo recurrences in 2 forms-either as a solid tumor recurrence within or adjacent to the original tumor bed, or spread throughout the brain. Although Hannah's oncologist said he wasn't concerned because the spots are not in the tumor bed, the neurosurgeon said that is not a criteria for recurrence, it can occur anywhere within the brain, or even in the spine. However, any recurrence that he has seen enhances on an MRI (and Hannah's spots are non-enhancing.) I did question him on this though, because I am aware of other cases in which children have recurred with medullo and their cancer does not enhance. He said he is aware of this, but has never seen it personally, it's pretty rare.

The neurosurgeon did recommend two things-a lumbar puncture and a PET scan. He wanted an lp to check her spinal fluid pressure as well as cytology (check for cancer cells within the cerebral spinal fluid.) I questioned this because Hannah never had cancer cells in her csf (which, by the way would be pretty bad.) He said that doesn't really matter, recurrences act differently and could be present now in the csf, even if they were not there originally. However, if the csf came back clean, that doesn't necessarily mean she doesn't have tumor present, but at least we would know it's not in her csf. This would give us a much better starting point to work from, if it ended up to be recurrence.

A PET scan is a scan where they inject you with a radioactive glucose (sugar) and then a scan is performed. Basically, areas of tumor (cancer) soak up the glucose and are highlighted on the scan. PET scans work differently from MRI's in that they detect metabolic changes in the body, rather than anatomic changes. So, sometimes they can detect cancer or recurrence of cancer before you would see any physical changes on and MRI. PET scans are generally very good at detecting scar tissue vs. tumor activity. Scar tissue has very little metabolic activity while tumor tissue is high in metabolic activity. There are a few drawbacks to PET scans though. They don't do a good job in differentiating cancer from inflammation, inflammation will show up as a hot spot on a PET, just like tumor. This can be misleading.

That is where the steroids come in. Hannah has been on steroids now for one week. We did this to see if it would decrease her symptoms-which they have not. If her symptoms were caused by inflammation in the brain (from radiation necrosis), the steroids most likely would have helped her. But, they did not. Her oncologist originally had said to keep her on them for 2 weeks, but it's been a week with no changes, and we are now weaning her from them. She did fairly well while on them. She had a couple bouts of emotional crying for no apparent reasons and she has been extremely tired. Just within the last couple of days, she has been more hungry than usual. That side effect has lead to her trying some new foods, out of desperation, which has been fun. Tonight she tried sushi for the first time, along with fried rice and miso soup. She said it was "ok" and would not have eaten it had she not been STARVING! She also tried pasta that I had made with a low fat alfredo sauce (ew, white sauce) and although she was grumbling about it, ended eating it. She is not good about trying new foods and hasn't been since she had chemo. Her gag reflex is very strong, and sometimes even the smell of a food will make her throw up, so it's not something I usually push too hard for her to do. Puking when trying to eat is never fun, for the puker or the watchers!

We are still waiting on second opinions from New York City as well as Hannah's radiation oncologists in Boston. We are really interested in their opinions, since if this is radiation necrosis, they should be most familiar with seeing it. Their tumor board met on Wednesday, and I followed up with them Thursday and today, but no word yet. We are taking this as a good sign. If they thought it was tumor, they would be moving a bit quicker-at least that's what we are hoping!

Before we decide on our next move, with an lp, or a PET scan or just waiting to rescan in 2-3 months, we wait. We wait to get those other opinions. Hopefully not much longer.


Thursday, November 11, 2010

I wish I could report that Hannah's MRI report came back as NED, all is clear. Unfortunately I can't. I knew when I heard Dr. Atlas on the phone today instead of his PA, the news wouldn't be good. He said there are 3 spots that showed up on her MRI. He knows me, so the first thing he said to me was "I don't think we're dealing with medullo." These spots are right outside the tumor bed, and very faint. They aren't enhancing on the MRI like tumor, which is a positive. He said they are like smudges on a pair of glasses, very faint.

So what are they? His best guess is that it is some type of radiation changes. Possibly necrosis? Oh yeh, necrosis is scar tissue. For right now, he is prescribing a course of steroids for 2 weeks to see if it helps her symptoms of vomiting, headaches, fatigue and nausea. Her doctor said that if she was asymptomatic, he would not be treating her just due to the MRI. He would just watch and wait. If she responds to the steroids, we scan again in 2 months because then the area needs to be closely watched. If she doesn't respond to the steroids, we scan again in 3 months.

Now we're in a holding pattern. I will report to him in 1 week to see if there is any improvement. In the meantime, I am heading to the hospital tomorrow to pick up a copy of the MRI so that I can send it to our neurosurgeon, and our radiation oncologist from Boston. I'm hoping the radiation oncologist can provide some insight. Possibly they have seen this before.

I'm drained, off to bed for the night. Thanks for hanging in with us.


Thursday, November 4, 2010

I just got in from a wake for Stanley Cherry Jr. Little Stanley was only 12 years old when his life was ended by his cancer, his body too weak to fight any longer. What a sad sight to see such a small young little boy in such a small casket. We met Stanley and his mom at Schneider's when Hannah and Stanley were both going through treatment. Stanley had Wilm's tumor-the most curable form of childhood cancer, even a higher cure rate than leukemia. Stanley's tumor was just so persistent, always coming back, even after a bone marrow transplant. Stanley died on Saturday morning after battling cancer for more than half of his little life. Stanley always had such a bright smile on his face, that is how we will remember him.

Thanks to everyone that sent smoothie recipes after my last post. The smoothies didn't go over so well. Hannah drank most of her smoothie on the first day, almost none of it on the second day, we switched to a chocolate shake on the third and fourth days and by the fifth day she was done with them. She just couldn't get them down. She doesn't feel well enough in the mornings usually to get anything in, not even plain apple juice. Tuesday of last week on the way to school at 7:45am when Hannah gave me the "I don't feel good" comment in her quiet voice. That means PULL OVER NOW, which I promptly did. Hannah spent the next few minutes throwing up on the side of the road trying not to get her new boots dirty. There was nothing for me to do but stand by and hand her a tissue when she was done. Se then felt better and made it to chorus on time at 7:55am. Poor thing, it must be like perpetual morning sickness.

I emailed her oncologist and he decided to move up her MRI to next week (to put that to rest.) Let's hope it does put it to rest because between then and now I'm getting hardly any rest. Honestly, I don't believe this is tumor. What I'm hoping it isn't is a problem with her ventriculostomy. Hannah had this procedure to help with the flow of cerebral fluid where they put a hole in the bottom of one of her ventricles in the brain to help the fluid drain out after her brain surgery. The doctor told us at that time that it could work forever or could at some point be blocked and have to be done again, or she may have to have a mechanical shunt put in. That would mean another brain surgery.

Her doctor did say he believes this is most likely pfs-posterior fossa syndrome. This syndrome involves a variety of signs and symptoms including mutism or speech disturbances, dysphagia, decreased motor movement, cranial nerve palsies and, emotional lability. We knew that Hannah had pfs following her surgery when her speech was limited, she stopped using her left side, she developed an issue with her eyes and she was emotionally unstable. Many children with posterior fossa (it's the back on the back of your skull) tumors develop pfs, some much more severe than others. Pfs is widely known and acknowledged, but it's origin is unknown. It's a complicated and often misunderstood syndrome.

Ok, I haven't done a medically detailed entry like this in quite a while! Thanks for sticking with us. Please join us in saying a few extra prayers next week as we look for another clear MRI! If you're reading this and you're family, I'm sure you can expect that "MRI deal" phone call from Hannah very soon!