My name is not Cancer. It is Cam.

My name is not cancer. Call me by my name. Tell me I'm beautiful. Ask me what i want to be when I grow up. Believe that I will. Look me in my eyes and see my strength. Talk to me and see how smart I am. I have big plans. Cancer will not define me. Please don't let it change the way you see me. Simply love me and watch me win. 

I found this paragraph on a fellow pediatric cancer mom's Facebook page this evening.  This was shortly after reading that another child, diagnosed with same type of cancer as Campbell, lost his five year battle today.  My heart rips everytime I hear this.  We so badly need a cure.  No child should have to go through this.

Last Wednesday we learned that Campbell's latest tumor, the third on her spine since June, has continued to grow, even while on the five drug chemotherapy protocol.  However, the growth seems to have slowed slightly.  Because of this, Cam's team has decided not to change anything right now and to scan her again 6 weeks later (putting us at January 11th).  This tumor is approximately 1 cm and not causing any symptoms.  As a reminder, it has not been treated with radiation yet.  We are hoping the medications will continue to work and show stalled growth, or better yet, shrinking of the tumor in January.  If not, then the team will discuss options.  The team is comprised of a team of neuro-oncologists, neurologists, neuro-surgeons and radiaton oncologists.  The options would most likely be surgery to remove as much of the tumor as possible, radiation to the rest of Cam's spine all the way up to the brain stem, and changing the chemo-therapy regimen Cam is on.  Or perhaps a combination of these choices.  For now, we bask in Cam's silliness and happiness.

This Monday, Campbell had her regular three week lab draw.  We were pleased that her ANC had risen back to acceptable levels (last week it was 650 - which is not so good) at 1250.  However, her anemia continues to get worse, with a hemoglobin of 6.5 (normal is 11 or higher).  Anything lower than 7 calls for a transfusion.  So, Cam and I headed into the Valerie Fund clinic yesterday for a few hours for Cam to get blood that had been so kindly and generously donated by a volunteer many weeks ago, having no knowledge of Campbell.  Yet again, the kindness of humanity struck me yesterday.  If not for blood donors, kids, any patients, like my Cam would be in bad shape.

Campbell's cheeks "pinked up" within an hour of beginning the transfusion.  We are hopeful that many of the neurologic type symptoms Campbell has been exhibiting lately are in fact related to the anemia, not the Thalidomide (one of the drugs she is on to fight tumor growth).  The doctor's will re-evaluate Campbell's neuro-symptoms next week and perhaps increase the Thalidomide dose as originally planned.  We hope this is possible since this drug is a key player in the protocol Campbell is on.

For today, Cam stayed home with me so I could monitor her for allergic reaction to the transfusion.  I am happy to say that none occured and she will be headed back to school tomorrow!

Thanks for all your prayers and support!
xoxo,
Robin

Positive thinking

We have spent the past few weeks talking to Campbell about the fact that her hair may fall out and trying to prepare her for it. We were very concerned as it had started thinning and, despite the "keep your hair" voodoo dances we have been doing, we wanted to make sure she we able to answer questions from her friends should the time come. Sometimes even we forget how strong this kid is. When I told her that her hair might fall out her comment was not sadness but ony a question - " Nanny will make me some hats right?". I think we could all take some lessons in her lack of vanity and big picture outlook.

Then last week, as she continued to thin on her head, I got the FIRST complaint from her in the past two years..."Daddy, if I lose all my hair, I won't be beautiful anymore...". Once she wa done with her tap dance on my heart out, I explained to her that it was her smile and HER that made her beautiful. I couldn't help but wonder if that was her or us talking? She has always had beautiful curls and both Robin and I have both commented on them over the years. So was she concerned that we wouldn't think so or is SHE concerned about her own appearance? Maybe a little bit of both is what I am accepting now...

Now, after spending the past week picking up more an more hair off the ground and out of the bathtub and her pillow and her brush and me and the couch and the kitchen....you get the point...we have passed the what if point and are faced with the reality that she will soon BR wearing hats as a staple of her wardrobe and will start looking like a "cancer patient". But, as we sat in church yesterday I couldn't help but think of how fortunate we are to be here with her. That she keeps smiling and feels great. And we can hope that while we watch, the chemo drugs are killing the cancer that is living in her spine. We can occasionally allow outselves to look forward to the days ahead of her when this will just be an unfortunate chapter in her life. We have this luxury while so many children and parents don't. Many that we know aren't as fortunate. They are hoping to get to the next holiday or the next birthday or even just tomorrow. Despite everything thus far, I still feel that we are fortunate to pick up her hair and laugh WITH her as she fights the fight of her life.

So Cam will enjoy her hats and start her collection and maybe inspire other kids with her strength and positive spirit like she inspires us every day. I'm thinking a fez may be a nice change of pace on Thanksgiving...

With Love,

Greg, Robin, Caitlin, Caroline and Campbell

The Waiting Place

Greg was reading Oh the Places You'll Go by Dr. Seuss to Cam the other night.  As I listened, he got to the pages about the Waiting Place.  It made me think about how Cam has been in the Waiting Place since the day she was conceived.  She has never been an easy child.  But then again, nothing worthwhile ever is.  She was very carefully planned and constructed with medical help, including antibiotics for Mom and 8 months, yes that's right, of bedrest.  And yet, against the odds then, she thrived.  Not just survived, but truly thrived.  She was born two weeks early at 9 lbs 15 oz.  Yep.  My little trouble-maker started defying the odds even before she was born.

Last week we received the unfortunate news that Campbell has grown another tumor on her spine, 4 vertebrae above the radiation field from this summer.  It is fairly small, measuring 1 cm.  Without a doubt, it is not visible on the July scan.  There is some debate whether or not it is visible on the June scan.  Seems odd, I know.  What the heck?  Is this thing playing hide and seek?  MRIs, especially of the spine, are very subjective.  It all depends on how the images are sliced.  It is quite possible that in hindsight the doctors, knowing now that something is there, might be able to "kind of" see the beginnings of this something on images from two scans ago.

That being said, all parties have been consulted and everyone agrees to stay the course and continue with the 5 drug anti-angiogenic protocol Campbell is on.  All doctors say that the drugs have not had enough time to work to switch them, yet.  Neuro-surgery feels the small size of the tumor plus the lack of symptoms does not warrant the risk associated with yet another surgery on Campbell's spine.  So, no surgery, at least for now.  Neuro-oncology and Radiation oncology want to give the drugs more time to work.  Everyone has agreed to an MRI sooner rather than later.  The normal time frame would be to scan in another three months.  Cam's has been scheduled for six weeks.  If in six weeks the tumor is not showing a response to the medication (either by remaining stable or growing), then we go back into discussions.  The choices would be to continue on the 5-drug (out of the question if it has grown, a possibility if it has stayed the same), switch chemotherapies to something stronger (although with many more side effects), surgical removal of the tumor, and/or radiation to the rest of her spine plus the balance of her lower brain (not previously irradiated).

Obviously, we did NOT want to hear of new tumor growth.  However, her brain continues to show No Evidence of Disease.  Her spine, below this pesky new tumor, looks good.  The original tumor field from June is clean and the additional spot found in July (never removed) is showing signs of tumor death (awesome).  These are all very good things to hear.  We try very hard to hold onto these good things and not think too much about this new growth.

In the meantime, Cam's appointments last week all went well.  The neuro-opthalmologist said her vision remains perfect continuing to show no side-effects from the cranial radiation Cam received two years ago.  The neurologist was please with her neuro functions.  The endocrinologist was also pleased. So much so that we don't need to see her until next summer.  All good news.

Cam continues to love school.  She is such a happy child.  Maybe because she always gets her own way ;-)  She is taking a ballet/tap class on Friday afternoons.  At first I thought Friday afternoon would be too much for her, that she would be exhausted from the school week.  She proves me wrong every week with excitement and energy for dance class!  I have never been happier to be wrong (which is very much unlike me).

Off to get my little dancer from school!  Sending love to you all from the Waiting Place on the Island of Denial!

xoxo
Robin

As much as I like boobs....

I hope that got your attention...  I don't say this to minimize the importance of finding a cure for breast cancer, I just wish that pediatric cancer got the same press.  September is pediatric cancer awareness month and I didn't see any sports teams wearing gold socks in honor of these kids that look up to and admire them.  I am not naive enough to not see that people don't want to talk about kids getting sick, but COME ON!!!

Anyway....

Cam has been tolerating the chemotherapy regimen very well and continues to amaze us. She takes pills (not all very small) every day (multiple times a day) without complaint. Her hair has started to thin but not noticeably to anyone that doesn't see her every day. Her attitude is inspiring. She has enjoyed school and has only missed a day so far (she had a cold). She has gone every week thus far for blood work and has really been a trooper. 

This week Robin and Campbell go back to Boston for Cam's first follow up scan since she finished radiation treatment.  She also will see the endocrinologist, the neuro-oncologist, optometrist and a boat-load of other people that are much smarter than I am.  We are hoping that they come back with good news regarding the spots that were still on her spine - that they are either gone or have not grown any more.  Along with that, we obviously are hoping that the MRI of her brain continues to show No Evidence of Disease (NED).

We have been so fortunate enough to have so many people that care about our family and girls. Heartworks continues to amaze us with their generosity and random acts of kindness. Our friends and family are there when we need to yell, cry, drink or just have a "normal" evening. It helps more than we can express to you.

 Please take a moment to say a prayer to whoever you pray to that we get the news that she needs.

With Love,

Greg, Robin, Caitlin, Caroline and Campbell

September is Childhood Cancer Awareness Month

It's been awhile (over a month, and very busy month at that!) since our last update.  I apologize!  Campbell kept me busy in Boston.  Let's just say she does not like Propofol very much.  That is an understatement.  It has now been added to an "allergy" list.  It makes her crazy.  Literally, Linda Blair from The Exorcist crazy.  The anesthesia team at MGH finally came up with a plan that involved versaid and propofol that gave me my sweet Cam upon waking from anesthesia.  Much better than the crazy Cam who was beating Mommy up daily.  I'm not kidding!  I have witnesses!  Ask any of our friends from Christopher's Haven!

So, we spent time bonding with other pediatric cancer families during our time in Boston, yet again forming bonds that I know will stay tight (just as they have with Tara and Jen from last time around).  There is something to be said for a shared experience like this.  It's a bond like no other.  As bizarre as it is to say, I am glad for the opportunity to have met all of these amazing women.  All mother's.  All gaining strength from each other, in different ways, whether that be a sounding board, a wine fairy or a chef.  It was wonderful.  I am so grateful to Christopher's Haven for not only providing us with an economical apartment for our time in Boston, but even more so for the opportunity to spend time in the momcologist dorm.  I truly do miss our spontaneous sit on the floor in the hallway drinking wine telling stories sessions.

That being said, I am glad to be home.  Cam rang the bell on 9/9, with a crowd of cheering families watching.  Friends from Christopher's Haven even came back over to the Proton Center to watch and cheer AFTER their appointments for the day!  Wow!  I cleaned the apartment and loaded the car while Cam hung out with Hannah one last time.  Even a 5-year old understands the strange situation we are in - she was crying as we left the apartment because she didn't want to leave and yet two seconds later she was crying because she wanted Daddy.  I still haven't figured out how to upload pictures from my phone to the blog.  I'll see if I can do that later.  The car was PACKED.  There was barely room for Campbell!

Cam started Kindergarten on 9/12 AND the 5-drug anti-angiogenic Dana Farber protocol.  All of the medication is taken orally, actually in pill form.  Have I mentioned before that my 5 year old rocks?  She can take PILLS!  She is amazing.  She can tell you not only the names of her meds, but she can identify them by appearance (actually rather sick).  So far, she is doing very well.  She has had clinic visits (to the oncologist here at home in NJ) each Tuesday.  They are pleased with how she looks and her labs are good.  Until they tell us otherwise, Cam can continue to go to school and dance classes, and pretty much be a normal 5 year old little girl.

This post is not nearly as eloquent as my last few.  It's hard to be eloquent when you have to update everyone on over a month's worth of activity!

I do want to say, thank you for your support.  And, I'd like to ask for one thing, before the month ends, could you please share Campbell's story with one new person?  September is Childhood Cancer Awareness Month.  If each of you tell one new person my sweet child's story, that is many more people thinking about childhood cancer, this increased awareness leads to increased funding for research which WILL someday find a CURE.

xoxo,
Robin

The bell

Yesterday I witnessed a fellow ependy child ring the bell at MGH.  A child whose mother I have "known" virtually for a little over a year.  We are both part of an online/email support group for parents of children diagnosed with Ependymoma.

It was a bittersweet moment, full of pride, anticipation, excitement and yet overshadowed by fear.  At least in the confines of daily radiation, our children are being watched closely.  As parents, we take comfort believing that if something were amiss, these trained professionals would catch it before we would.  However, without the dreaded MRI, no one can say for certain that there is nothing growing in our child's body that shouldn't be there.  Unless your child has become symptomatic, which as parents we would certainly notice before medical staff, there would be no cause for suspicion.  And yet, even without the MRI as evidence, we breath a little easier knowing that smarter people are closely observing our children each day while here.

Once you ring that bell, it's another story.  The weight transfers almost immediately back onto the already sagging shoulders of Mom and Dad.  The knot in our stomach grows tighter and tighter as we get further and further from the watchful eyes of the medical staff.  I thought I was ambivalent about Cam's bell ringing in a few weeks.  That was until I watched Stephanie yesterday. 

Stephanie is an amazing, sweet, incredibly bright and VERY brave 6 year old girl.  She is the one I mentioned on Facebook a few weeks ago that did all of her radiation treatments without anesthesia.  She then taught another 6 year old girl to do the very same thing.  Wow.  They are just awe-inspring.

As I watched Stephanie, my eyes filled with tears, as they did nearly two years ago when I watched our buddy Jaxson ring the bell - the first pediatric bell ringing I witnessed - and as they did at my own child's first bell ringing.  For weeks, I just have not felt this same way.  Perhaps it's fear getting the best of me; perhaps wanting to stay on my own little Island of Denial; perhaps it's pessimism.  Last time, the bell ringing seemed like closure.  It was the end of a very ugly Chapter in our life.  This time, we are still in the middle of it and will be for many more months.  I know that radiation is probably the easiest time Campbell will have for the next year.  Maybe that's why I don't feel the hope the bell ringing promised me last time.  Maybe I think it lied.

Even with the lies, I will continue to pray for good news.  I can't NOT pray for good news.  That would be defeatist.

Stephanie is also a "odd" Ependymoma case.  Odd in that her tumor decided to grow in an unusal location, much like my Cam's.  Stephie's grew on the top of head, and decided to come back twice in that area.  Cam's first one was in the typical Ependymoma location (Posterior Fossa/4th ventricle - at the lower back of the brain), and her recurrence moved to her spine.  Ependymoma's favor the Posterior Fossa and if they come back, they usually do so in the original location.  In the last few weeks, I've often talked about Cam and Stephie being the "oddballs" who just had to be different.  Tonight I pray that they will continue to be different, that they will defy the odds; that their Cancer does not come back again; that we will see each other each year back in Boston for the annual check-up with Radiation Oncology.  It was a blessing to meet Stephanie, her sister and her mother.  Her mother who was a rock and made their 8 week stay in Boston a little vacation with pit-stops at MGH each day.  Theresa inspires me.

I am pouring a glass of wine right now, and toasting Stephie and her family.  Here's to many, many, many years of NED scans!

From Robin's Perspective

So, for nearly two years now, I've let other people - Mike Chidsey, Chris West, my brother-in-law Mark and, for the longest time now, Greg tell the stories on this blog. Tonight, for whatever reason, I decided it was time for me to chime in.

Today was Cam's 8th radiation treatment back at MGH. 20 more to go. We've been away from "the girlies" for 11 days now and it is killing me. Greg has been gone for 7 days. I truly feel like I am here, with Campbell, but my heart is torn in two. I know that I must focus on Cam and entertaining her, so that this ordeal is not as "boring" for her, but so often throughout the day I miss my other girls. I miss nagging at Caroline and smiling knowingly at Caitlin (who is a mini-me) since I can read her mind. I miss hearing Campbell calling Caroline to play Bahbies (and yes, I mis-spelled that on purpose. The one seemingly permanent souvenir of Cam's Cancer treatment in Boston is the Boston way of saying Barbies :-) I'll take it. It's kinda cute.) I miss telling Caitlin to clean up her room, doing laundry, muttering under my breath as I pick up yet another dirty towel on the bathroom floor, writing grocery lists, staying up late working, crawling into bed next to Greg, who has left the light on for me while I stayed up working until well past midnight - only to get up and do it all over again tomorrow.

Through this all, I know that we are very blessed. We are so very fortunate to be staying at Christopher's Haven. We've met some amazing families, many of whom have endured more than we have. They have given me a new appreciation, again, for what we have. Even as I wait to hear back from the doctor's on whether or not they will be starting Cam's chemotherapy earlier than originally planned, which will most likely lead to an earlier disappearance of the beautiful blonde curls that I so love to play with, I still appreciate what we have. Cam is tolerating the radiation well, even being a trooper about not being able to eat until after her treatment each day (which so far was as late as 2:10pm). Her energy level is amazing. She exhausts me. I look at her with awe every day.

She has made a few new friends at the apartments, which has been such a God-send. She anxiously awaits the end of the day, when everyone is back from their appointments, and Kennedy can come out to play. It's nice to see her acting like a "normal" kid. It makes me think of one of my favorite sayings "there is no such thing as normal, only degrees of dysfunction." Normal is what you want it to be. If this world of pediatric Cancer is my new normal (well not so new anymore since we are approaching the 2nd anniversary of Cam's original diagnosis), then so be it. But hear me stupid Cancer, we will win. I am sick of you. Pediatric Cancer may always be part of me now, but I will see the day when we can talk of how we beat you down.

Update - 8/5

The first 4 treatments of radiation are done!!!!

Cam came through like the champ that we all think she is. No nausea to speak of really and we were able to relax during the evenings.

On Monday, she had an MRI of her brain - just to get a baseline prior to radiation beginning. The scan was CLEAN! This is really good news.

On Tuesday, we met with the radiation oncologist while Cam was in for her treatment and she showed us the two spots on her spine that they are concerned with. They are both VERY small and they are hopeful that treating them with the radiation and chemotherapy witll be sufficient to keep them from growing any further and\or get rid of them completely.

Also on Tuesday, we moved into the apartment at Christophers Haven (christophershaven.org). It is only a 5 minute walk to the proton center where Cam gets her treatments so it is EXTREMELY convenient. Also, unlike a hotel, it gives us the opportunity to be with other families that are also going through treatment and share success and frustration with people that can relate with what everyone is going through. Cam has already met a few new friends and is looking forward to getting down to the "loft" to play with them again tonight.

Greg heads home tomorrow (begrudgingly) to keep our health insurance current. Caroline will come up with Nanny and Pop-Pop aroudn the 16th of August and stay for the majority of the remaining time and Caitlin will join her the last week of August. Greg will come up as much as possible on the weekends. With all the visits as well as the timing of Cam's treatments, we are hopeful that this will be behind her before we know it.

We spoke with the neuro-oncologist on Monday as well and they have decided to start chemotherapy the end of September - and will run for 27 weeks. So, hopefully, by next spring she will have yet another story to tell of how she kicked cancers a**.

For now, please keep praying for her and the amazing doctors that are taking such good care of her.

With Love,

Greg, Robin, Caitlin, Caroline and Cam

Update - 7/23

Back in NJ!

We made it back from Boston after Cam's marathon appointments this week. The bonus was that we did get to spend a lot of time together and see many of the Boston sights.

On our way home, we got a phone call from Dr. MacDonald (radiation oncology) regarding the scan that Cam had on Friday morning. While the scan looked good, it unfortunately showed what they believe is tumor in the same field on her spine. They feel that this is residual tumor from the last surgery but in it is larger than it was a month ago.

We spoke with the neuro-oncologist last night after getting this news. She continues to be relatively optimistic that there is hope for our little friend and ensured us that if Cam's case WAS hopeless, she would let us know. Neither she nor Dr Robison (the neuro-onc managing her case) had an opportunity to see the scans yet but we will speak to them both on Monday to see what they think of the scan - but based on the description they received from Dr. Macdonald, they are inclined to agree that it is likely tumor rather than post surgical scarring. It will also be interesting to get the input of the neurosurgeon who was sure that she had removed the entire tumor. At this point, they remain hopeful that the treatment can fix this.

This new revelation does not appear to change the plan for Campbell in terms of radiation and chemotherapy. More to come this week as we prepare for her treatments to begin on the 2nd.

This sucks...

With Love,

Greg, Robin, Caitlin, Caroline & Campbell Grace

Update - 7/21

Greetings from Boston!

A lot has happened in the past month since we last updated. Nothing all that interesting - unless you count Cam getting past her back being swollen.

We all spent some time together on LBI with Nanny & Pop-Pop and Aunt Moo. It was amazing to see Campbell, only 3 weeks removed from surgery, running and jumping waves with her cousins and sisters.

While we were at the beach, we got the a start date for protons on August 10th. Robin flew into planning mode to try and figure out housing and was able to get confirmation for an August 8th date at Christophers Haven - a non-profit that provides apartments across the street from the Proton Center for families whose children are going through treatment for $30 a night. Which is AWESOME!

The next day, we received an email moving Cam's start date to August 2nd...the best laid plans I guess...Robin, again, flew into planning mode and we are waiting to hear about a start date at Christophers Haven to see if we can get it to match the proton start date.

The good news about the start date is that it gets Cam's treatments started within the 56 day window that the oncologists like to have it started by - which also provides us some piece of mind as we want to make sure Cam fits into all of the "good" categories this time around.

This week, we are ALL up in Boston for her planning appointments. We have already met with the anasthesiologist, the radiation oncologist, the nurse, social worker and she has already had a CT scan. Tomorrow they will do an MRI which gets combined with the CT in order to map out the field and create and shape the beam that will be used on her.

We were hoping to meet/talk with the doctors over at Dana-Farber while we were here as well. Unfortunately, we were a little taken back by some of the comments by the radiation oncologist and her opinion that the tumor would MORE THAN LIKELY come back. This was NOT something that we had heard previously and, as you would expect, hit us from out of the blue. While we were both not of the opinion that anything was a sure thing, we had a lot more optimism prior to our meeting. We sent off a quick e-mail to the doctor at the Jimmy Fund but weren't able to schedule a time to get in to see him. Basically, we just want to hear that they are optimistic that this is something they CAN fix. Otherwise, why the F*&$K are we doing all of this?????!!!!! Can you sense our frustration???

We did get an email from them that said the magic word of "hope" in it but it is very scary to start hearing the terms "another recurrence" and "quality of life" being thrown around. Especially when you look at Cam today...this sucks.

We have had several good days here in Boston together. A lot of walking and sightseeing which Cam thought was "BORING" but the rest of us enjoyed! We saw the Old North Church, some old burial grounds, USS Constitution "Old Ironsides" and some more "old stuff" (as Cam put it). It's been a nice opportunity for us to all be together before the older two head off to camp and then Cam starts treatment.

Please say a prayer and send positive thoughts Campbell's way as she starts her next journey.

With Love,

Greg, Robin, Caitlin, Caroline and Campbell

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

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

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

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

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

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 scan...as 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