Saturday, June 25, 2011

Update - 6/25

"Pray for sunshine but plan on rain"

Cam has been on bed rest since our last post. She is actually being a real trooper through it but is still pretty bored sitting on the couch all day. There are only so many movies you can watch before you start going crazy.

The plan is to keep her flat for the weekend and then check the incision site to see what the swelling looks like. If it looks good, then we will move forward and gradually start increasing her activity level. If it is still swollen\re-swells when we remove the pressure dressing, then we will head back to Boston for an MRI and appointment with the neuro-surgical team to see if they need to go back in and repair the leak surgically - which would SUCK.

So we hope for a non-event when we take of the dressing on Monday morning. Fingers crossed that we have a nice quiet weekend at home followed by a very boring Monday....

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Wednesday, June 22, 2011

Another Update - 6/22

Sometimes you just have to say WTF?..

While giving Cam a shower this morning, Robin noticed that her back seemed to be quite swollen around the incision site. After a call to the neuro-surgeon and a trip to the pediatrician, they have decided they are concerned with the possibility of a CSF leak. They have put her on STRICT bed rest and she is to stay on her stomach for the next 3 days with a pressure dressing on her back. The hope is that it will resolve itself and close whatever leak may have developed. If not, we will be headed back to the hospital and OR so that they can repair the leak in her back.

More to come....

Update - 6/22

OK - so a lot has happened in the past week...

A week ago today, they had Cam up and out of bed which made her quite happy but she was still very sore. She had a follow up MRI Wednesday evening which showed what they expected - there does not appear to be any residual tumor in her spine. She had a play date with her friend Ivy on Thursday in the hospital which really lifter her spirits.

On Friday morning, we brought Cam home! They were kind enough to give her some pain killers and valium before our trip which worked well since traffic and weather caused the ride to take more than 6 hours. We finally made it home to a lovely site as our wonderful community decorated the front ride with posters and balloons!

Since she has been home, she still has remained fairly uncomfortable. It's sometimes difficult for us to remember that she had MAJOR surgery just a week ago. She remained on the steroids through the weekend which caused her to swell quite a bit on top of the lovely impact they made on her mood. Even so, she was happy to be home and see her "girlies" !!!

She started complaining of hip pain over the weekend which seemed to get worse as the day went on. A little ibuprofen and oxycodone made her feel better but she is still complaining of some pain. We had a conversation yesterday with the neuro-oncologist who said that this was not really suprising given the extent of the surgery and wasn't really worried. If it does not seem to get better over the next week or so, we will call and see what else might be going on.

He also gave us the results of the pathology and some information on the next steps for Cam. The tumor was an ependymoma (which is what they expected) and a grade 3 (compared to a grade 2 two years ago). Treating with surgery only is not an option - which we knew. They typically would like to start proton beam radiation about 4 weeks post-op but they can push this a few weeks if needed without a problem. After the radiation (still being discussed is where she will receive it - but it is looking like it will be a "generous" field on her spine), she will do some oral chemotherapy (the extent of which we do not know). We will have another call with Dr Robison later this week and hope to have a more definitive plan in place - but at least we have a general outline which is more than we had last week.

In the meantime, Cam's job is to recover from the surgery. She slept for almost the entire night last night in her new bed (her old mattress was too firm and was hurting her back, legs, hip) so we hope she is starting to get better!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Wednesday, June 15, 2011

Update - 6/15

Our apologies for the lack of an update the past few days. We'll try to cover it all here:
On Sunday, we headed up to Boston after dance recitals (Cam made it to hers and even danced!) and they took her for surgery first thing on Monday morning. The surgery was scheduled for 4 hours and they started her around 9:15am. At about 10:10 they made the first incision. By 12:45, the nurse came out and told us that Dr. Goumnerova was coming up to speak to us. This could either be really good news or really bad news.
It was really GOOD news. She was able to get the entire tumor out. In fact, she said when she opened up the dura, the tumor basically popped right up to the surface - which is why the surgery didn't take as long as they thought it would. She did say that it was attached to one of the nerves going to her right foot and may cause some numbness on the instep of her foot but did not anticipate anything substantial.
When Cam woke up after surgery - she said "My legs don't hurt anymore!" - which is music to our ears. She was in so much pain before the surgery that it was such a relief to hear it from her.
The past few days have been progressively less difficult. She had to stay flat for 24 hours post-op which she did not like at all. Yesterday, she was able to incline up to 30 degrees and now she hs up to about 45 degrees today. She is eating well and drinking apple juice like it is going out of style.
This afternoon, they plan on getting her up out of bed and moving around a little bit. They are also trying to schedule an MRI for today or tomorrow to make sure that everything is in order post-op. They will also start to get her off the steroids gradually over the next several days which we hope will improve her mood as well. As of this morning, she is on target to get released by the end of the week and go home!
Neuro-oncology is kind of waiting in the wings for neuro-surgery to release her to them so that we can get started on the cancer treatment. No "official" results back from pathology yet but everything seems to be pointing to ependymoma again. We'll wait to get the final results and then we should have a better idea of next steps in her treatment.
For now, we are so overwhelmed by all of the support and prayers that she has received over the past week. We are truly grateful to have you all thinking of her and the other girls!
More updates will be posted when we have them -
With Love,
Greg, Robin, Caitlin, Caroline & Campbell

Saturday, June 11, 2011

Update - 6/11

It's been a long couple of nights....

On Tuesday, the steroid dose that Cam had been on since last week, was lowered from 12 mg a day to 8 mg a day. Unfortunately, by Wednesday afternoon she was really not comfortable. We called the hospital and spoke with the attending on call and they raised the does BACK up to 12 mg a day. That seemed to help temporarily. She was still complaining quite a bit about pain in her legs so we gave her a narcotic for pain for the first time since she was diagnosed again. This also seemed to help and I think she actually got a few hours of sleep. A subsequent conversation with her neuro-oncologist actually raised the dose of steroids to 18mg a day (3 pills, 3 times a day). This is really taking toll on her little body as she is quite puffy (which is normal) and her stomach is all messed up. Also, unfortunately, she is still having a difficult time getting comfortable while sitting/laying down so the past several nights have been very long.

Luckily, we head back to Boston tomorrow night and are that much closer to having this thing out of her back and getting on the road to recovery.

Someone asked me the other day if it was easier this time or last time we went through this....interesting question since BOTH suck! But thinking about it a bit further, the answer is - they are just different.

Back in 2009 everything happened very fast. She was not feeling well for several weeks but was functioning at her "normal" level with the exception of the last several days prior to her diagnosis. Also, the time we were told about her tumor to the time it was removed was very short and there was a ton of things to get done in those 25 hours or so. We just kind of went with what the doctors told us and hoped for the best. We didn't have much time to think about what was going on.

This time we have a lot more information. From a knowledge is power standpoint, this is great. We know a lot of the questions that need to be asked, we are familiar with the doctors, the hospital, etc. The problem with this is that we find our minds racing ahead to step 20 and thinking about all the potential scenarios when we need to get to step 2 first. There is also the aspect of the waiting this time. The first thing we want is to get this tumor out of her. It was nice to have the time to come home and prepare for this upcoming week, talk to Caitlin & Caroline and spend some time together. On the other hand, we have had a lot of time to sit at home and worry about the coming week - will she be in a lot of pain, will they get the whole tumor, will she need chemo...? She is also not feeling well - which just sucks! She is moaning and ASKING for pain meds which just breaks your heart. There is so little we can do for her until they do the surgery on Monday morning that it is very frustrating as a parent.

So the answer to my friends question is basically - neither one is better - they both SUCK in every way possible.

We are hoping that Sunday brings her some relief as she is supposed to be dancing in her recital. She has really been looking forward to it and is still telling us that she wants to do it. So we will keep our fingers crossed and the box of tissues close.

Please say a little extra prayer at church\synagogue\mosque - WHEREVER AND WHATEVER YOU PRAY TO - this weekend. She needs all the help she can get!

With Love,

Greg, Robin, Caitlin, Caroline and Campbell

Monday, June 6, 2011

Update - 6/6

Campbell continues to be stable the past several days. She is feeling good and is complaining less about the pain in her legs - likely due to the high dose of steroids she is on - which is good. The doctors have not put her on any restrictions so today she will head down for her dance rehearsal for her big show on the 12th and then she will go back to school.

Caitlin and Caroline took the news very maturely. After being upset at first, they were able to discuss everything like the amazing young ladies we think they are. They asked lots of questions which we answered as honestly as we could so that they have all of the same information that we do.

For now, we will try to concentrate on a normal routine for the week before we head back up to Boston on Sunday.

Thank you for all of your kind words and positive thoughts the past few days. We again are finding ourselves very humbled by the support we have received by our friends and family!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Saturday, June 4, 2011

Update - 6/4

Our apologies for not getting any updates up for 6 months (wow, has it really been that long?). Things have been going well in the Hoyt house since Cam's last scan...

Memorial Day weekend started as uneventfully as you could hope. We actually had great weather for the first time in quite a while. On Saturday night, the girls stayed over at Nanny and Pop-Pop's house while we headed into the city for a show with Cam's Godmother (Aunt Genene) and her step Godfather (Uncle Mike).

When we picked them up on Sunday morning, Cam was not acting like herself. She was complaining that her legs hurt and was just "off". We chalked it up to allergies and being over tired and headed off to Six Flags for the day. Cam actually slept in the stroller while we were at the park and had us mildly concerned but because we had a scan already scheduled for this week, we trudged on.

On Wednesday, Robin and Campbell headed to Boston for appointments with endicrinology and neuro-oncology which were both uneventful. I headed up to Boston after work on Wednesday via train (that's another story...stupid Amtrak). Both Robin and I just had an uneasy feeling heading into the scan but were hoping to have our concerns erased afterwards and it was just anxiety fueled worry.

Thursday morning we headed into the MRI of her brain and spine followed by a trip back to the neuro-oncology office to read the soon as he walked in we knew something was up.

The scan showed a new tumor growing at the base of Cam's spine. It is about 1 1/2 inches long and 1/2 inch wide. This is what was causing her leg pain as the tumor is pressing up on the nerves in her back. They scheduled an appointment for Friday with the neurosurgeon (who they had already sent the scans to) to discuss surgical options. There were basically 3 scenarios:

1) They can go in and get it all.
2) They can go in and get some of it
3) Because of the location of the tumor, it is too dangerous to operate and we treat it with radiation and/or chemotherapy.

We met with Dr Goumnerova on Friday afternoon who has a high degree of confidence that she is going to be able to get it all. Surgery is currenty scheduled for June 13th at 8:30am at Childrens Hospital. After the surgery, we will have more of an idea of how we proceed from here.

In the meantime, they have put her on a high dose of steroids to minimize swelling on the nerves - which is making her hungry, extermely thirsty and a lunatic (actually in a humorous way rather than the 'roid rage alternative). If her condition deteriorates, we will have to make a call and then determine if we do the surgery on a more emergency basis.

For now, we will try and spend the next week being as "normal" as possible - dance rehearsals, school, work, etc.

Thanks for all of your positive thoughts and prayers. Please keep them coming as we tackle this next hurdle in Cam's journey.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell Grace