Thursday, September 23, 2010

Interferon treatment update

I don't really have much new to report, but thought I'd check in now that Summer has had four interferon treatments.

This Monday's appointment was challenging - it was the first time I was able to tell Summer was in pain from the procedure. Ironically, it was also the first (and only) time we tried to use the numbing cream. So much for that helping her get through it.

Luckily, the whole thing was over very quickly. She was not in pain as soon as they were done and her reaction to the injection was even more mild than it's been in the past.

Even so, I was a bit more nervous going in for the appointment yesterday because I was afraid she'd be in pain again. This time it was Dr. Geyer performing the procedure (the two before that were with Dr. Leary), and I think Summer was a little more relaxed since she knows him better, but she was still a bit crabby from being woken up early.

The procedure went very smoothly. Summer cried for less than 30 seconds after the initial needle poke, and then was quite the rest of the time, quite content to watch Sesame Street while the procedure was going on. I think it helped that Dr. Geyer didn't have an assistant come with him to help hold Summer, so she didn't have the added stress of someone she didn't know trying to help hold her still.

We met the pharmacist who is the gate-keeper for the Interferon at Childrens, and we learned the reason they don't have the fluid ready before we get there. We had assumed that it had to be used within a certain timeframe of being mixed, but actually it's because it costs more than her car. And not a 10 year old, worthless car either...a 2006 Honda Accord. That's crazy! The insurance company must really love us now... :)

The pharmacist gave us her direct number so we can call her when we're en route to the hospital, and she'll start getting it ready then so we won't have to wait at all once we get there. They just don't want to throw away that much money if we end up canceling the appointment at the last minute. I certainly don't blame them!

Friday, September 17, 2010

Photos and treatment

We had a photo session with Keri Meyers Photography this morning. She did an amazing job! Summer was feeling better than yesterday, but still wasn't exactly cooperative. Keri managed to get some great shots anyway. She's so very talented! Visit the Keri Meyers Photography blog to see the sneak peek.

Also, make sure to enter the drawing for a session with Keri by making a donation to the Run of Hope page for Team Summer - rules and more details here.

Summer also had her second Interferon treatment today. It was pretty much the same deal as yesterday (including the waiting...but they're working on better timing for future sessions), except they withdrew only as much fluid as they replaced with Interferon.

Summer's doing well so far tonight, but she's starting to get a bit of a fever again. Hopefully her recovery will be as quick as the last time. We've got a busy weekend ahead, preparing for her birthday party on Sunday. Hopefully the weather forecast is wrong because the party is at the least we have a shelter.

I probably won't post after each session, simply because there's nothing really new to say each time. I'll just give updates to check in every once in a while and as new information becomes available.

Thursday, September 16, 2010

First Interferon treatment

Yesterday was the first of 12 Interferon treatments. Summer wasn't happy about it (who would be, really?!), but overall it was pretty uneventful.

They shaved a little spot on her head over the reservoir, rubbed the area with iodine swabs to sterilize it.

Dr. Ojemann, the chief Neurosurgeon, inserted a needle into the reservoir. It had a flexible tube leading to the syringe so Summer didn't have to hold completely still the whole time, which was great. She did have to sit still in my lap, but I didn't have to hold her head firmly or anything like that. He withdrew all the fluid he could get out of the cyst - about 10mL. Then they unscrewed the fluid filled syringe from the end of the tubing and swapped it with the Interferon syringe so Dr. Geyer could push the medicine back in.

The entire process, from inserting the needle to pulling it back out, took about three or four minutes. Summer cried for the first couple of minutes, but had stopped before the end of it. I think she was mostly upset that they were messing with her and making her sit still, not so much because she was in pain. It was pretty amazing to see how much fluid they were able to draw out of there.

After the procedure, she was in a pretty good mood. I'm sure it was a relief to have the pressure in her head reduced. By about 8:00pm, she was starting to get a bit of a fever, but still seemed to be feeling okay. We gave her a little Ibuprofen to help control the fever and put her down for bed on her usual schedule. She slept through the night just fine.

I went to work today, but Jason said Summer wasn't feeling so well when she woke up this morning. She still had a fever and cried for about 40 minutes until the Ibuprofen he gave her kicked in. After that she seemed to feel much better, but took an early nap.

This afternoon, she wasn't feeling well again - just really cranky and clingy, without much appetite. She is napping again now. We were hoping for no reaction to the drugs, but these symptoms are all normal. She probably feels like she has the flu right now.

I'm hopeful that she'll feel better again tonight and tomorrow morning so she can have a little break before her next treatment at 3:00 tomorrow. I'm very excited for a photo shoot with Keri Meyers Photography in the morning - hopefully Summer will be up for it!

Tuesday, September 14, 2010

Starting Interferon treatment tomorrow!

Yesterday, we brought Summer in to Children's for a CT scan with contrast to check whether or not fluid injected into the cyst will leak. The only appointment time available was one without anesthesia, which I was really apprehensive about since she had never before been awake during a CT scan.

Dr. Browd was scheduled to do the injection of the contrast, but was in an emergency procedure when we arrived, so a couple of resident doctors who have followed Summer's case came down to help us instead. They swabbed the area around her Ommaya reservoir with iodine, then inserted a needle and withdrew some of the fluid from the cyst, replacing it with the same amount of contrast solution. The contrast acts like a dye. It's a clear liquid, but is visible on the CT scan.

Summer wasn't happy about it, but who would be? I think she was mostly just upset that we were holding her head still and people were messing with her. She bled a tiny bit after they removed the needle, but all-in-all it was a pretty uneventful procedure. She'll have to go through the same process (except they'll inject Interferon rather than contrast) twelve more times over the next few weeks.

We had to wait for a little while for the contrast to disperse, and then they brought us in to the CT room. I had to lay Summer down on the table, with her head positioned between two padded tension paddles and held down by a padded strap to keep it still. Then they swaddled her body onto the table so she couldn't squirm around. They left one hand free so I could hold it during the scan, and gave me a flashing Mickey Mouse light to distract her with. Yeah, right!

She was NOT happy at all about being strapped down on the table while it slid back and forth through a big machine that made a loud whirring noise. Luckily, it was all over pretty quickly, and they got the scans they needed without having to do it again. I felt awful for her, but honestly she screams much more forcefully when she's getting her hair rinsed out in the bathtub at it can't have been too bad. She calmed down as soon as we got her unstrapped from the table and I was holding her again.

The scans showed no leaks from the cyst, so we're set to start with the first Interferon injection tomorrow at 3pm. This one will be slightly different from the rest of the treatments because they'll withdraw as much of the fluid as they can from the cyst before injecting a small amount of the Interferon. Going forward, they'll only remove as much fluid as they will replace with Interferon so they can tell if the cyst is continuing to produce fluid on its own.

This week, Summer will have had four doctor's appointments in five days. Today was Summer's two-year checkup with our pediatrician, Dr. Anderson. We talked about a lot--vitamins, diet, development, etc.--but there's not really anything major to report. Summer weighs 22lbs 12oz (6th percentile) and is 33" long (35th percentile). She had to have one shot, and it was a breeze. I miss the days when I would agonize over taking her to the pediatrician for shots because it seemed like such a big deal...

Friday, September 10, 2010

Summer is 2 today!

Summer kicked off her second birthday with an early morning MRI. Here she's sleeping off the anesthesia.

We didn't really learn anything new from it. The cyst is still refilling, which is to be expected. The catheter is still in place, and everything looks okay for us to start Interferon next week.

We talked about the feedback from Boston, and Dr. Geyer said that the tumor board here had also discussed the proximity to the optic chiasm and didn't think there was impending danger at this point. With careful monitoring, we should catch any changes in time to get to radiation before that area is put in danger.

On Monday, we'll go back in to have her head shaved over the Ommaya reservoir site. They'll sterilize the area, apply some numbing cream and use a needle to pull a little bit of the cyst fluid that has accumulated through the Ommaya. Then they'll inject the same amount of dye back into the cyst. This test will make sure the catheter is functioning as it should and will work for the treatment. She'll then have a CT scan - awake - to confirm that the cyst isn't leaking.

I'm not sure how well the CT scan will go. She's never had one unless she was already under anesthesia. They said I can hold her throughout the procedure and that it's pretty quick, but Summer has a reputation for fighting pretty much anything the doctors and nurses want to do. They may have to give her some sort of sedative to help her calm down. We'll see.

Then the plan is to start treatment on Wednesday afternoon. They'll withdraw as much of the cyst fluid as possible through the Ommaya and then inject a small amount of the Interferon into it. That will be the first of 12 treatments, which she'll have every Monday, Wednesday and Friday.

Yesterday I googled 'intracystic Interferon' (for about the millionth time over the past few weeks) and my blog came up on the first page of Google results. Hard to believe that the treatment we're about to start is so uncommonly used that my blog is one of the best hits...

Most of the information out there about Interferon is for systemic use, which is a much larger dose given intravenously, and affecting the whole body. It does have more side effects, but compared to other drugs they're pretty minimal. When given in a very small dose directly into the cyst, the only side effects we might see are flu-like symptoms: fatigue, fever, weight loss, loss of appetite and behavioral changes. These side effects will go away once the treatment is done.

We got home from the hospital at about 10am this morning and kicked off the birthday festivities:

The gifts
"Happy birthday Mommy!"
It's a surprised bell!
A walk to the store
Testing out the trike
She did not want to wear a helmet!
Someone gave Summer this amazing hand-me-down gift. She was very excited! Can't wait to play with it more tonight.
Summer's birthday card made it onto, but sadly not on the Birthday Show. Next year I won't miss the deadline! They only scanned the front, but here it is:

It's been a fun day, despite a visit to the hospital, and there's more fun to come! Now, I'm off to frost a birthday cake!

Wednesday, September 8, 2010

A quick update

We heard back from Boston yesterday morning. I won't go in to great detail about what they said because it's mostly a repeat of things I've already explained. The overall verdict was that it's probably okay to try the Interferon and wait, with VERY close monitoring.

The proximity of the tumor mass to her optic chiasm (the part of the brain where the optic nerves cross) was enough to make them a bit nervous. Since the Interferon treatment won't treat the mass at all, the tumor mass will continue to grow. We have to be careful not to let it get too close to the optic chiasm where it could cause damage, or force us to include part of the optic chiasm in the field of radiation. Any damage done to that area would likely be irreversible, and the bit her vision has already suffered is enough!

They suggested staggering six-week checkups by a neuro-ophthalmologist with the six-week MRI schedule so we'd be checking in every three weeks, and would hopefully catch any significant changes early on.

We have an MRI on Friday morning (Summer's birthday!), followed by an appointment with Dr. Geyer. We'll be able to talk with him then about Boston's response (they've updated him as well) and confirm that we still want to move forward with the Interferon treatment.

I'll post again after that appointment.

Wednesday, September 1, 2010

Catching up

Sorry for the delay in posting. I’ve been busy doing a lot of research over the past two weeks, trying to reach a decision that we can be comfortable with.

Per my last post, we have been given a decision to make – try a chemotherapy option, called Intracystic Interferon treatment, or go directly to radiation. It’s an impossible decision, with no clear winner, but we’re forced to somehow choose.

Jason had always leaned toward the Interferon option, while I have had more reservations about it. After doing a lot of research, and talking to multiple doctors across the continent, I’m leaning toward Interferon too.

There just really isn’t much on it. I found two studies, completed in 2004 and 2007, with a grand total of 30 patients treated with Intracystic Interferon. It is a drug that is used frequently to treat other cancers, just not this one and in this manner.

I also found a comparison of Bleomycin (the drug initially suggested) and Interferon, which showed that Interferon did seem to have some advantages. Mainly, there were fewer side effects if the drug were to leak out of the cyst.

The studies that have been done appear to be promising. It doesn’t work for everyone, but when it does, it buys a median of just over a year until radiation becomes necessary. Of course, it’s a very small sample size, so it’s impossible to say how much time it will buy for us, if any.

I received one report back from the Craniopharyngioma support group about the use of this drug. Although it didn’t save their son’s life from a very aggressive form of the tumor (it metastasized after two bouts of radiation), it did shrink the cyst and provide him some relief from headaches during his last few months.

I spoke with Dr. Merchant at St Jude’s about the treatment, and he was under the impression that this course of treatment had been abandoned. He referred me to a doctor in Vancouver, B.C., who had actually written the comparison article I mentioned above. Her response was that it certainly does still have a place in treatment for Craniopharyngioma, but that it’s only appropriate in select cases. Summer’s case is one of them. Most people aren’t diagnosed this young, and the risks of going straight to radiation are lower, so it’s just not an appropriate treatment step for them.

After looking into it further, I started to feel more comfortable with the treatment itself, but just wasn’t sure I wanted to take the risk of allowing the tumor mass to continue to grow. What if the tumor spouts off another cyst and we’d have to go back for another surgery? What if the tumor causes pituitary problems that wouldn’t be a direct result of the radiation, like Diabetes Insipidis?

We decided to get a second opinion from Massachusetts General Hospital, one of the places we might end up for radiation at some point anyway, to make sure they felt comfortable holding off on proton therapy for a while, assuming the Interferon treatment works. I spent a week working with Children’s to collect all of her records and send them off to Boston. The nurse practitioner we work with on the HemeOnc team, Katie, was immensely helpful with this task, and we were able to get everything to them by yesterday afternoon, in time for the cutoff to review Summer’s case today. We should hear back from them today or tomorrow.

In the meantime, we also had a few appointments at Children’s. Last Wednesday, we had an Ophthalmology appointment to check her eyesight. We were happy to find out that her visual acuity (how well she sees when she’s looking directly at something) has actually improved since her last vision appointment after the first surgery. She’s well within the normal range for her age.

Just this morning we had another VEP test (the one with the electrodes), and Summer was very cooperative for it! It showed a bit more optic damage from the cyst growth, but you certainly wouldn’t know it from watching her. She doesn’t bump into things or seem to have trouble seeing things. We do know that her peripheral vision is still damaged, as she’ll often startle as if something just jumped out at her, when it had been there the whole time. Luckily, she’s so young that she won’t ever know anything different.

We won’t know how big her visual field is or what level of contrast she can see until she’s old enough to do some more extensive testing that would require her to verbalize what she’s seeing.

Last Friday, we had a wound check with neurosurgery (everything looks great, she’s healing well!) and an appointment with Dr. Geyer to talk more about the options. After speaking with him, and going over our concerns again, we have decided to move forward with the Interferon treatment as long as Mass. General agrees that we can hold off on proton therapy for a while longer. We’ll probably start treatment in the next week or two, and we’ll monitor with MRIs every six weeks. The first will be at the end of September.

Dr. Geyer reiterated that he thinks either choice will be the right one. It’s simply a matter of weighing the risks and figuring out which ones we’re comfortable taking. Choosing to go with Interferon means that we’re willing to risk another surgery in order to give Summer’s cognitive functions a little more time to develop before radiation.

Even if we went to radiation right away – and that’s still a possibility if the Interferon doesn’t work – she would still be a pretty normal kid. She just may have a little more difficulty with some subjects in school than she would have without radiation. We would never know for sure. But, we do know that we want her to have the best chance in life possible. If that means another torturous couple of weeks from another surgery, we think it would be worth it in the long run to know that we did everything we could.