Pray for Campbell

It's been a while...

2012-01-23T16:40:00.000-05:00

I just looked and realized that it has been a while since we last updated those interested (and not on Facebook) on Campbell.

After her scan in December showed some growth of the tumor in her spine, they scheduled and performed another MRI on January 10th. There hope was that the tumor would show some response to the chemotherapy regimen that she has been on for some time. The scan went well and showed that the tumor was stable and had NOT grown in the 6 weeks.

We are still debating what the next steps are for her. In the meantime, Cam continues to be her happy self and is tolerating the chemo well. Her hair, is almost completely gone which still does not bother her. Unfortunately, she caught a stomach bug around New Year and has not been able to kick it. Today is day 25 of her GI issues so we have an appointment scheduled with a gastroenterologist on Wednesday morning to see what else might be going on. Hopefully, they can find some relief for her and she can make it back to school soon.

We'll keep you posted!

With Love,

Greg, Robin, Caitlin Caroline & Cam

My name is not Cancer. It is Cam.

2011-12-08T00:30:00.000-05:00

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

2011-11-07T07:30:00.000-05:00

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

2011-10-21T15:12:00.000-04:00

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....

2011-10-10T09:09:00.002-04:00

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

2011-09-27T23:54:00.000-04:00

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

2011-08-18T22:36:00.000-04:00

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

2011-08-11T22:13:00.003-04:00

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

2011-08-05T15:21:00.002-04:00

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

2011-07-23T10:52:00.004-04:00

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

2011-07-21T20:00:00.002-04:00

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

2011-06-25T08:55:00.002-04:00

"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

2011-06-22T15:54:00.002-04:00

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

2011-06-22T08:28:00.006-04:00

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

2011-06-15T10:13:00.005-04:00

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

2011-06-11T05:46:00.003-04:00

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

2011-06-06T08:04:00.003-04:00

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

2011-06-04T09:42:00.004-04:00

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

Update - 12/19

2010-12-19T09:41:00.002-05:00

Thank you to everyone for their prayers during Cam's last set of scans. We are HAPPY to report that her latest MRI showed No Evidence of Disease!!!! the best news we could ever receive! The doctors were also amazed that none of the scans show any residual effects from her 8 month battle with meningitis. Her hearing is fine, her vision is fine...the goods news kept rolling in from Boston!

They changed her schedule for scans to 6 months so she goes back in June for her next MRI (barring something unforeseen).

The girls are busy getting ready for Christmas and we have really enjoyed chance to experience the entire holiday season this year together as a family. We hope that you have the same chance and opportunity and embrace it.

Merry Christmas and Happy New Year!

With Love,

Greg, Robin, Caitlin, Caroline and Campbell

Update - 12/2

2010-12-02T11:33:00.002-05:00

Happy Holidays!

Next week, Robin and Campbell head back to Boston for her next series of appointments. She will see the radiation oncologist for her 1 year post treatment appointment, a 1 year follow up with the neuro-psychologist, the opthomologist, the endocrinologist as well as an MRI of her brain and spine and appointments with the neuro-oncologist...all in 3 days...phew....

We were pleased to have spent Thanksgiving this year at home and healthy - a nice change from last year when Cam was just finishing her radiation treatments.

Caroline has organized a toy drive to benefit the children at Goryeb Children's Hospital (where Cam was treated initially). She is collecting new unwrapped toys at both Penguin Ice Cream and our house (21 Old Army Rd) in Bernardsville. The toys will be delivered on 12/21 to the hospital. According to Caroline, she "knows what it is like to be in the hospital on a special occasion since we spent my Dad's birthday in the hospital with my little sister last year.." We are SO PROUD of her. If you are interested in donating a toy and local, you can drop them off at either location. She is also collecting gift cards that will be used to purchase additional toys for the kids.

We hope to see you over the holiday season! Our best to all...

With Love,

Greg, Robin, Caitlin, Caroline & Cam

Update - 9/13

2010-09-13T08:43:00.002-04:00

Exhale.............

The results from Wednesdays MRI came back CLEAN! The changes that appears on the August scan that caused the concern are nowhere to be found!!!!

The eye exam on Monday did not show any thickening on her optic nerve so that is also a relief. Also, the spinal tap looked fine with only 2 white cells found. The neuro-oncologist is not expecting anything exciting from the remaining tests that they are doing so that is also good news.

We will head back to Boston in December to meet with everyone again and have another round of scans as well as a 1 year post treatment appointment with the radiation oncologist.

On Friday, we held another very successful bake sale for Cookies for Kids Cancer. Thanks again to everyone who baked and ate. We also had the opportunity to meet some new friends from Drew University Womens Lacross thanks to the Friends of Jaclyn Foundation. They are a great group of ladies and we are excited to get to know them.

Today, Campbell gets to go to her new school for the first time (school bus and all!!!!)!

Breathing a little easier until December,

Greg, Robin, Caitlin, Caroline & Campbell

Labor Day Weekend Update

2010-09-05T18:20:00.003-04:00

We hope that everyone is enjoying their last days of summer. Campbell spent this labor day weekend in a much better place than she did last year....with friends down at the beach.

While we were heading down to the beach, we got a welcome email from the "Friends of Jaclyn Foundation" introducing us to the Drew University Womens Lacrosse team who has been generous enough with their time to ask Cam to be a "part of their team". We are all very excited and honored to be part of such a wonderful organization and look forward to making new friends. Reading Jaclyn's story (http://www.friendsofjaclyn.org/) is a true inspiration. When you have a moemnt, please take a look at the above link and watch the story that aired on "Real Sports" - amazing!

Tomorrow afternoon, she and Robin will head back to Boston for another round of MRI, opthamology, oncology appointments and wrap it all up with a spinal tap scheduled for Friday morning. Unfortunately, she will again miss her first week of school and Robin will miss seeing the other girls off to school on their first day again (last year Robin, Cam and I were in Boston while Cam battled meningitis).

On Friday, while Robin and Cam are heading back from Boston, myself and the other girls will be hosting Bake Sale #2 to benefit Cookies for Kids Cancer. The last one was such a success, we figured why not run with it some more. If you are interested in baking, please let us know and we can arrange for you to drop off the goodies. A big thank you, once again, to all of our family a and friends who are so generous with their time and have graciously offered to help out this week while we make the next turn in what we pray will be Cam's continued road to recovery. We could not do it without you!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 8/16

2010-08-16T08:05:00.003-04:00

So, it has been a couple of weeks since I updated the blog (thanks for reminding me, Robin...).
After Campbell appointment with the neurologist (see last post), she had an MRI of her brain and full spine - a 4 1/2 hour event - at Morristown Memorial Hospital. The scan itself went smoothly. We did not get an official reading on Friday but did hear from the local oncologist (Dr. Fritz) who said that the preliminary reports were that there was no sign of new tumor growth - which is great news. She would be sending the scans up to Boston for them to review as well. On Monday, we got the final word from the radiologists reading the scans - ALL CLEAR!!!

We spent the next several days with a weight off of our shoulders and it was discussed that the appointments in Boston for September (Cam was scheduled for an MRI, opthomologist, audiologist, Brain Tumor Clinic....etc...appointments).

This past Friday, we received another call from Dr Fritz with the findings based on Boston's reading....

The images showed some "thickening" on the optic nerve on Cam's right eye. In addition, there was some "linear enhancement" on her spine. While there is no specific tumor growth that they can identify - this is a change from her June MRI and is enough cause for concern to NOT cancel her September appointments. They would like to repeat the MRI and see Cam in the BTC at Dana Farber. In addition, they she will have another spinal tap to run cytology (check for cancer cells in her CSF). This, however, cannot be done until after they see the MRI to make sure that it is safe to do so - if you do an LP and there is tumor present, the decrease in CSF can cause the brain to "drop" and make matters worse. There are also some less dire possibilities - radiation scarring (though unlikely due to the location being outside the radiation field), meningitis scarring - but given Cam's history, they are going to take a very cautious approach and make sure that no stone goes unturned.

So we are back to watchful (and hopeful) waiting to ensure that Cam doesn't develop any symptoms that would make this a more emergent issue.

For now, please keep Cam in your prayers as she approaches this next fork in the road. Your prayers and support have brought her a long way and we are hopeful that they will continue to guide her through.

In the meantime, Caitlin and Caroline are going to hold a "Cookies for Kids Cancer" bake sale on Sunday, August 22nd at our local supermarket. All of the money raised will be donated to help fund pediatric cancer research. They are really working hard on the event and we are very proud of them for thinking of ways to help! More information can be found at:

http://bernardsvilleblogger.wordpress.com

and

https://www.cookiesforkidscancer.org

With Love,

Greg, Robin, Caitlin, Caroline & "Cam"

Update - 7/23

2010-07-23T11:10:00.002-04:00

Campbell had her appointment yesterday with the neurologist and the pediatric oncologist at Morristown Memorial. They all acknowledged that we are not imagining the limp and the neurologist noted some deficiencies on her left side in one of the tests that could be attributed to where her tumor was located.

They would like to move her next MRI up a few weeks (she was scheduled to have her next imaging in September) and include both her brain and spine. If she started to exhibit additional symptoms, they would admit her and have it done immediately but we are hoping that won't happen.

For now, she continues to "gallop" around the house and act like herself.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 7/21

2010-07-21T10:39:00.002-04:00

Campbell is still doing well, though we have noticed some changes since her last appointment in Boston. She has developed a slight limp which we were concerned enough with to take her to the pediatrician yesterday morning. While we were there, we noticed that she was unable to support her weight on her toes which concerned us just a little more.

They suggested that we get a physical therapy evaluation as well as perhaps an appointment with a local neurologist. We also sent off some emails to the various specialists in Boston to see if this may be a side effect of radiation and/or surgery and/or meningitis. Thus far, it does not sound as though it would be due to the radiation but we haven't heard back from the others.

Needless to say, we are a little on edge right now but are hopeful that this is just a normal bump in the road rather than something more sinister...your prayers would once again be appreciated.

With Love,

Greg, Robin, Caitlin, Caroline and Campbell

Update - 6/16 - ALL CLEAR

2010-06-17T14:37:00.003-04:00

Campbell completed her first "normal" MRI and brain tumor clinic. The MRI showed NO TUMOR at all. The ventricles which had expanded previously due to the hydrocephalus (isn't he that elephant thing from Sesame Street) are back to their normal size. We also saw the neurosurgeon who gave Cam a clean bill of health with no restrictions going forward. She also saw the neurologist as part of her visit and he was also please with her progress.

We will go back in September for her next appointment which will be considered her 1 year mark! Here is to hoping that it goes as well as this one!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 5/21 - MENINGITIS IS GONE!!!!

2010-05-21T14:05:00.003-04:00

Campbell was up in Boston again this week for another spinal tap and an appointment with the neuro-oncology and Infectious Disease teams.

The best news of all is that the white cells in her spinal fluid were down to a normal range which means the meningitis is FINALLY gone! (only 7 months, 27 weeks of antibiotics and 2 surgeries later)

She continues to do well overall. Next month we will head back to Boston for her first "normal" cancer follow up MRI and appointment at Dana Farber. Hopefully, we have no reason to go up sooner.

Update - 5/14

2010-05-14T09:58:00.002-04:00

Cam continues to do well (despite a fall off the playground that scared the heck out of us). Her bloodwork from this week came back with the creatnine levels much higher than last week and definitely higher than the doctors would like. After a brief discussion amongst the various "teams" taking care of her, they have decided to take her off of the antibiotic she has been on for the past several weeks. She was supposed to end it next week but they were concerned that it would potentially cause damage to her kidneys - a problem that we certainly don't need.

They will do the LP next week off of all antibiotics so we now wait and see how her body reacts to all of this. Hopefully, she does not start feeling sick again and the neck pain doesn't return. We are hopeful and cautiosly optimistic that she has put the meningitis behind her....

Her is a recent photo of her from her school "Mom's Day Luau"

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

5/9/10 - Happy Birthday Campbell!

2010-05-10T09:20:00.002-04:00

On May 9th, we celebrated Cam's 4th Birthday - appropriately, on Mothers Day! The celebration was particularly special for us this year and we enjoyed Saturday evening with her favorite dinner, cake and a special visit from Cinderella!

She continues to do well on the anitbiotics and next week she is scheduled to go to Boston for a "final" spinal tap to make sure the meningitis is completely resolved. She is doing great in school and we are looking forward to the next several weeks' end of year activities with an art show at her school followed by her dance recital.

Her last round of blood work raised some questions about her kidney function and generated some chatter about taking her off the oral antibiotic. She will have some additional blood work today see where that number is and if it is still going the wrong direction, they will stop the antibiotic and do the final LP off of everything (yikes...)

Thank you for your continued support and prayers - we are sure that they are what got her to her big day!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 4/28

2010-04-28T15:19:00.003-04:00

Campbell continues to improve and was able to get her PICC line removed last week on Wednesday. She has now moved on to oral antibiotics for the next 5 weeks.

She goes back to Boston at the end of the month for a final LP to make sure that all of the white cells are removed from her system and then we will hopefully be able to put the meningitis episode(s)? behind her.

She was able to go back to school and dance class and is settling in to her new routine. Her sisters also seem to be doing better with the stability that has come back to our life. They will ALL be in dance recitals in June and it will be nice to have those events to enjoy.

Then later in June, she will head back to Boston for her first "normally" scheduled MRI to make sure there are no new signs of tumor. Fingers crossed that her progress continues to be positive!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 4/17

2010-04-17T16:30:00.002-04:00

After a busy but productive week in Boston, Robin and Campbell are home again. She is feeling good and continue to improve each day. Here is the latest:

Cam had another spinal tap on Tuesday afternoon and the WBC count in her CSF was down to 12. This is still elevated which is a bit discouraging but the infectious disease team is not too concerned with it. The rest of the appointments were uneventful - the neuro-surgeon was happy with her progress, ID was glad to see the numbers going down to 12, and neuro-oncology was glad to see her continue to improve. The plan based on the WBC count is to keep her on the meropenom antibiotics for one more week followed by 4 weeks or cipro (by mouth). So the PICC line will come out next Wednesday ! WAHOO !!! Good-bye super-tube!!!

The last thing on her schedule last week was a bone scan to make sure there was no sign of a bone infection. They were interested in this judging from the fact that the bone flap they removed grew bacteria. The good news on that is it was completely NORMAL (that's a first) - which gives them more confidence that the infection will not come back and that she will finally have put the meningitis behind her!!!

She will go back to Boston the end of May for another spinal tap to make sure that she is all clear meningitis-wise and to have her "normal" MRI as it relates to the cancer to make sure there is no new tumor growth.

Yet another whirlwind of activity for Cam but she was able to run with her cousins for Easter and is back to school again...she is our little hero.

With Love,

Greg, Robin, Caitlin, Caroline & Cam

Update - 4/5

2010-04-05T08:23:00.002-04:00

One more week of antibiotics to go! Campbell seems to have turned the corner and is feeling good - though she seems to REALLY be sick of the antibiotics. She was finally able to make a family gathering and saw all of her cousins on Easter Sunday.

Next week, Robin and Cam head to Boston for a whirlwind of tests/appointments. She has an appt with the radiation oncologist, the neuro-oncology team, Infectious Disease team, Neuro-surgery, a neuro-psych screening, a hearing test, a spinal tap and a bone scan. Once these are all complete, we hope to finally be able to put the meningitis behind her and move on with the maintenance phase of her cancer treatment.

Thank you for all of your support, as always...

With Love,

Greg, Robin, Caitlin, Caroline & Cam

Update - 3/30

2010-03-30T13:32:00.002-04:00

Campbell continues to make little improvements every day. Currently, she is battling some nauseau/vomitting. We are being told that this is "normal" post surgery so to not push eating as long as she keeps drinking and it doesn't get any worse.

Today, she can finally have her hair washed for the first time in a week so that will be her adventure for today....hopefully later this week she will be up for a day trip to NYC!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 3/27

2010-03-27T08:59:00.002-04:00

Home again!!!!!

After getting the final report about which indicated that the bugs were the same as before, they were able to send Cam home yesterday afternoon. She is still feeling a bit tired and unsteady on her feet but is so happy to be home with her girlies again!

The plan is for a 3 week course of antibiotics (meropenem) followed by another spinal tap to confirm that the white counts in her CSF are back to "normal". This time, it seems that they will be much less likely to accept 18 as her baseline. We will also plan to follow up with neuro-surgery, neuro-oncology and radiation oncology (in addition to Infectious Diseases) during her trip to Boston in mid-April. This trip was originally scheduled to only be with the neuro-onc team and to have an MRI (her normal maintenance plan) but as we all know, Cam does not particularly like the land of normal.

So we will continue with her antibiotics via "Super-Tube" for the next several weeks and hope that she makes the progress all the doctors expect.

Fingers, toes & legs are crossed while saying a big prayer that this is the end of the infection and we can go back to the easy stuff - cancer....

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 3/25

2010-03-25T18:51:00.002-04:00

The preliminary results of Cam's cultures have come back and it appears that they are growing the same bacteria as she was originally. Again, this means that this infection just never went away. Relatively speaking, this is really good news.

Now that all of the foreign bodies are out and we clear this up, it should NOT come back. Hopefully, tomorrow we should have the final report as well as a report on what antibiotic it will be sensitive to so that we know what she should be on and for how long. At this point, we can do the antibiotics at home with our eyes closed (and often have for the late night doses) so bring it on!

Thanks again for the positive thoughts and prayers. We are so blessed to have the support group that we do.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 3/24

2010-03-24T22:00:00.003-04:00

Cam had a pretty quiet day today as she had no procedures scheduled. The neurosurgery team stopped in early this morning and as of 12 hours post op none of the cultures had grown anything - which is somewhat disappointing in that it put us no closer to an answer as to why she continues to carry meningitis.

Later this morning, the oncology team stopped by and while they were here, someone from ID came in. They still had no answers and were talking about scheduling another gallium scan and a white-tag scan in which they take blood, tag the white cells with some identifier and then re-inject the blood prior to the scan to hopefully find where they are going to fight infection. Nothing was scheduled but they vowed to go back and think about what to do next.

A short time after that, neurosurgery stopped back in again and the cultures were ALL growing - EVERY LAST ONE OF THEM! This is GREAT news! It puts us much closer to an answer and hopefully means that they have located the source of the infection and by removing the foreign objects yesterday will prevent the meningitis from coming back or lingering (depending on how you look at it). While it might sound odd to be pleased that she was growing bacteria in her brain, you can imagine our relief that we know where it was coming from and appear to have removed it all.

Tomorrow, we will hopefully have an answer on the specific type of germ that was growing and a plan from ID as far as length and type of treatment. Most likely this will entail another round of IV antibiotics but we don't know for how long they will last or what type of medication she will be on. The final results of the cultures will be what determines that.

Thank you for all your prayers and positive thoughts! They are felt and appreciated!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 3/23

2010-03-23T18:56:00.002-04:00

Campbell went down for surgery this afternoon around 1:30pm. The surgery was scheduled to take about 3 hours. About 1 1/2 hours into it, the neurosurgeon came out and they had completed irrigating the area and looking for signs of infection.

While there were no noticeable signs, they did send many swabs and fluid samples down to the lab for analysis. They also removed the piece of bone that had to be removed to access the original tumor site. This was not replaced and apparently is not medically necessary nor are there any risks to Cam not having it in.

They found and patched a "hole" in her dura (?) and also drained the fluid pocket that formed after the first surgery. Hopefully, this fluid is what was infected and was draining through the hole and that is what was causing the ongoing infection (though we are not sure how likely this is).

They also put a PICC line (aka "Supertube") back in so that we can start the antibiotics at home again once we finally are discharged. Hopefully, that will be later this week but it will depend on what the next few days bring.

For now, please continue to pray for her speedy recovery and that the cultures and labs bring some answers for her.

With Love,

Greg, Robin, Caitlin, Caroline & Cam

Update - 3/22

2010-03-22T22:12:00.002-04:00

After a relatively uneventful night, Robin and Cam spent the day waiting to be taken down for her MRI and PET scan that was supposed to determine what the next steps were. While they were waiting, the doctors decided on the next steps anyway...

Cam will go in tomorrow afternoon for surgery to attempt to locate the source of the infection in her brain. They will revisit the prior surgical sites and irrigate them well and hopefully knock off whatever bacteria is left in there.

We once again ask for your prayers for a safe and successful surgery.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 3/21

2010-03-21T22:55:00.003-04:00

My how things change quickly with Campbell!

Yesterday morning/early afternoon Campbell began complaining about neck pain and nausea. ...uh oh.... These are two of the things that the doctors told us to look out for. She was not running a fever at all so we had some debate about calling the pediatrician and being the overreacting parents. We ultimately decided that we should call and after a quick conversation with the doctor, we headed to their office (which they were kind enough to open for us after hours on a Saturday) so that they could do a rapid throat culture in the hopes that Cam had contracted the strep throat the Caroline had earlier in the week....wishful thinking...if it did then we would treat with oral antibiotics like "normal." As we all know, Cam does not live in the world of "normal." In fact, she is not even on speaking terms with it...

The strep test came back negative and Robin headed to Morristown Memorial with Cam to start "the plan." You see, the plan was that in the UNLIKELY event that Cam became sick again, we would head to the hospital for a CT scan and a spinal tap. These would both be done BEFORE any antibiotics were started so that we could avoid the problems that we had previously. Then, depending on what those tests show, we could start on antibiotics and then head to Boston, as soon as Cam was well enough to travel.

The results of the CT scan were normal, but the spinal tap showed an elevated number of white cells = the meningitis is back (think Poltergeist...go ahead and say it...you know you want to...). So she was admitted last night into Morristown in order to receive 2 doses of antibiotics overnight. This morning, she was put in an ambulance and transported up to Childrens Hospital for further treatment and to have the neuro-surgery team have a look and see if surgery is necessary to find out where this infection is lurking off in a corner and not letting go of her.

Robin and Campbell made it to Boston and after a brief stint in the ER, were admitted to our friends on 9 North (best people in the world). Tomorrow, she is scheduled to have a PET scan as well as an MRI. She will be seen my the surgeons in the morning and they will have to make a determination based on the scans as to if/when they will go searching in our babies head.

At this point, we don't know how long she will be there or what exactly they are going to do. I will provide updates as I get them from Robin as I am at home with Caitlin and Caroline trying as best as I can to be Robin while she is not here (...I am not very good at it at all...). If they decide on surgery, I will head to Boston to be there for that but I am hopeful (though not optimistic) that I can avoid that trip.

For now, please say a prayer that the doctors at the very least find the cause of this and a way to make her better for good.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 3/17

2010-03-17T09:58:00.002-04:00

Campbell continues to feel great and seems to have put the most recent bout of meningitis behind her. She had her PICC line removed a couple of weeks ago and is glad to be rid of "supertube." We have had a lot of communication with Dr Lee in Boston at Dana-Farber Cancer Institute and she has been a god send. Her attention to Cam has really provided a great deal of comfort for us and we know that she is in good hands.

Now we wait to see what happens and hope that the meningitis is gone for good. We are in a period of holding our breath everytime she says she has a headache or doesn't feel well. Ultimately, for the forseeable future every time she gets a fever it will mean a trip to the ER for a spinal tap so that they can rule out meningitis as the cause of the fever. This wouldn't be that big a deal if it weren't for the fact that both she and her sisters are in school and bringing home who knows what germ. But, as much of a headache as that will be, it is necessary to ensure that she doesn't get sick again.

Should the meningitis recur (AGAIN!) they will have to discuss other options to determine the cause of it. Obviously, you don't want meningitis and you certainly don't want to have it multiple times as there are many risks associated with it - particularly hearing loss which Cam is already at risk for due to the radiation.

This weekend we will participate in an event for St. Baldricks where Greg will shave his head for charity. We have already raised over $1000 for this cause and the event itself is over $30,000 for pediatric cancer research!! Coincidentally, the event will be held exactly 7 months from the date of her initial diagnosis.

For now, we will continue to hope and pray that Campbell continues to make improvement every day. It is truly a miracle how far she has come.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 2/10

2010-02-10T21:41:00.002-05:00

Campbell continues to be treated for meningitis. She is feeling really good and was actually able to start school last week. She also continues to go to dance class with "Miss Linda" and LOVES it!!

After a brief scare last week that when she started showing symptoms of the meningitis again, and a quick trip to the ER, Robin and I were actually able to get away for a few days to TN for a friends wedding - the first time we really have been alone since August. It was very difficult for Robin to be away from Cam as she has been with her every day since everything started.

She had a spinal tap last Tuesday which we hoped would show that the number of white cells in her CSF had dropped to zero. Unfortunately, it was actually only down to 18 (from 30 in the hospital in Boston). So, her antibiotics have been extended to Feb 24th and she will have yet another spinal tap next week to make sure that the infection is gone.

We continue to be amazed by the support of our friends, family and the entire community. Yet another fundraiser was held for Cam and we are inspired by tje way that people have come out to support her. We have always thought that she was a wonderful little girl - we just didn't know how many other people think so too!!! Thank you all so much for your continued prayers. She is still fighting this off and we have no doubt that she has come this far because of them!

With Love,

Greg, Robin, Caitlin, Caroline & Cam

Round 2 - Day 3 - and she is HOME!!!

2010-01-23T08:21:00.002-05:00

Day 3 brought exactly what we thought it would. The CT that she had Thursday night did not show any signs of bone infection which is good news. She had another spinal tap yesterday (Friday) morning which showed the white cells in her CSF down from 900 where it was when she had her first one last week to 30.

The infectious disease doctors were looking for this number so that they could determine how long a course of antibiotics she would need. They have come up with 3 weeks from 1/13 (the date she last had a fever). So she will be on the IV antibiotics until February 3rd or 4th. Luckily, we can do this from HOME so it isn't nearly as troublesome.

Long term, if she gets any meningitis-like symptoms they will want her to be treated very carefully and will want to look further at surgical intervention. Most importantly, they do not want her to be given any antibiotics until AFTER a spinal tap is done. They were somewhat frustrated by the inability to identify what the specific bacteria growing was as she had already been on 48 hours of antibiotics before the spinal tap was done here at home.

Cam is feeling much better than she was a few weeks ago and is ready for the big party tonight. Her sisters are really glad to have her home and she is happy to be able to play with them again and from home!

Thank you all for your thoughts, prayers and support this time around. Hopefully, we won't need to ask for them again any time soon...

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Round 2 - Day 2

2010-01-21T09:43:00.003-05:00

Cam continues to feel great which is wonderful news. Yesterday, we saw all of the teams that we expected to see.

Infectious Disease didn't seem all that concerned given the way she was acting but was said that they would have been happier to know if it was the same bacteria as last time or not. They are now working on a treatment plan for Cam which will most likely involve several WEEKS of antibiotics via her PICC.

Neuro-Oncology was also in and from a cancer standpoint, she looks great. They didn't have any concerns with the scans that we brought with us.

Neuro-Surgery was in and the doctor that we saw was somewhat on the fence as to how they would handle her. One option he mentioned was what amounts to exploratory brain surgery - take out anything foreign that is in there, irrigate the area, maybe not putting the piece of skull back in...YIKES!!! We are not prepared to let them go in and pick at her head until they have no other options left on the table and it appears that they are on the same page. He was just laying all of the options out there.

This morning, they started talking discharge orders so we are hopeful that we will be out of here by this weekend!!! They still need to decide on length of treatment and what to do long term for her. Again, this will most likely mean close coordination between her primary care doctor, the oncology team at home, the ID team at home as well as the oncology and ID teams here in Boston. Anytime that Cam gets anything, they will have to agree on an approach since clearly she lives to make their lives complicated! Her long term follow up brain tumor care will still be done here but they think that it is important that EVERYONE be kept up to speed to make sure that the coordination of care is top notch - can't argue with that logic...

The rest of today, we will wait and see and keep our fingers crossed that they get the home health situation worked out and get us out of here in the AM...shhhhhhh......don't say it too much or it won't happen...

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Childrens Hospital Boston - Round 2 - Day 1

2010-01-20T08:52:00.003-05:00

After a delightful stay at Morristown Memorial we were finally sprung yesterday morning at 10 for our drive to Boston.

We arrived late afternoon and were admitted via the Emergency Room. It was actually quite comical to watch Cam skipping down the hallways and giggling while as they prepared to admit her to a room upstairs. We saw her neuro-oncologist yesterday in the ER and she was pleased to see Cam looking as good as she is. In fact, all of the doctors that came in were quite shocked when they compared what the chart said was her diagnosis to her demeanor and we are quite pleased to confusing them this way for once.

She was admitted to a private room since she is on precautions due to the meningitis - which is nice! Though it does have its disadvantages as she won't be allowed out to the play room. Oh well...we are hoping that the stay isn't so long that it becomes an issue.

This morning we are waiting to see the Infectious Disease doctors as well as the neuro-surgery team. Dr.Lee (the neuro-oncology attending) also mentioned that they are going to put her films up during the oncology/radiology/neuro-surgery "conference" so that everyone can weigh in on her - unbelieveable how many people are looking at this now.

No doubt, we will be out of here in no time. In fact, last night Cam was ready to "bust out of this joint...." - maybe a little too optimistic.

With Love,

Greg, Robin, Caitlin, Caroline and Campbell

Update - 1/14

2010-01-14T11:50:00.002-05:00

OK...Cam is back in the hospital. On Monday morning, Cam woke up throwing up and then started complaining about her neck hurting. Of course, our first inclination was to call the pediatrician for what we thought would be a quick visit to make sure everything was normal. Of course, we were wrong...

Cam was admitted back into Morristown Memorial via the ER on Monday afternoon and diagnosed with meningitis...AGAIN..or STILL...?

She had a CT scan on Monday afternoon followed by an MRI which showed no cancer which is good. However, the spinal tap that followed on Wednesday showed white cells so she is back on IV antibiotics and is scheduled to have a PIC line (the return of SUPERTUBE!!!!) put back in on Friday morning.

We will most likely be heading back to Boston on Tuesday to meet with the doctors there (neuro-oncology, neurosurgery, neurology) to get their take on the situation. The thought is that perhaps the fluid pocket that developed post surgery is the source of the infection. Unfortunately, at this point, we just don't know and we need more people weighing in on the situation...

At this point, Cam is feeling good, which is nice. We will wait and see what the next few days bring, if anything and keep our fingers crossed that it all works out.

Boston is lovely this time of year, right...?

With Love,

Greg, Robin, Caitlin, Caroline & Cam

Update -12/28

2009-12-28T10:57:00.002-05:00

Merry Christmas to everyone! Campbell is doing great! She is still experiencing some of the fatigue post radiation and is back to napping - which is actually pretty nice for Robin! Otherwise, the hair on the back of her head is starting to grow back and if you had to pick out the sick girl in a crowd, you would be hard pressed to pick her.

We had a nice Christmas at home and are looking forward to a HEALTHY New Year! Campbell, Robin and I will head back to Boston in the middle of January for a follow-up MRI and appointment with the radiation oncologist.

Happy New Year!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 12/16

2009-12-16T20:17:00.002-05:00

Cam continues to progress well following her treatment. She is back to running around and being herself though she does appear to FINALLY be showing some signs of the fatigue that they thought would catch up with her during the treatment.

She will have a few follow up appointments in the next several week for some physical therapy and occupational therapy evaluations. While her hearing test has come back perfect at the end of November, we will continue to monitor it to make sure there is no long term impact - but we are expecting there to be some hearing loss.

Overall, we consider ourselves very blessed to have come so far in such a short period of time.

A very Merry Christmas to all of you from our family! We hope to catch up with you over the holidays!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

DONE!!!!

2009-11-30T14:48:00.002-05:00

Campbell completed her radiation treatments today and got to ring the Good Luck bell! We are so thankful that this chapter in what is sure to be a long story with a very happy ending. We will be in Boston for the next several days and have a follow up appointment with the neuro-oncologist on Wednesday afternoon. After that we are sprung from Boston and can come home for an extended amount of time!!!

I will try and get the video posted later today at least of her ringing the bell. We also took video of much of the process so I am going to get that up as well - in case anyone is interested.

Thank you all again for your support!!!

With Love (and quite a bit of relief as well...),

Greg, Robin, Caitlin, Caroline & Campbell

Happy Thanksgiving!

2009-11-25T17:30:00.003-05:00

Campbell finished treatment #29 this morning and she and Robin will be coming home tomorrow morning. One more to go and then we can turn the page on this chapter. Video to come of the bell ringing and hopefully a start to finish video of her treatment day for us all to remember (thanks to David & Lisa Kotz - we continue to be astounded by this community).

We have so much to be thankful for this year - our health, family and friends (new and old). We'll be holding each other a little bit more tightly this year and in the future and remembering how quickly life can change. Be thankful for the people you have in your life and love your family and friends with all that you are.

To all of Cam's doctors, nurses, specialists, therapists....we are so thankful to you for saving our baby girls life. There is no way to ever repay you for your skill, compassion, caring, patience and understanding. You are truly amazing people.

To our friends - there are not words to express how thankful we are for everything you have done for us. You have made a difficult time a little bit easier with every hug, visit, card, meal, smile and phone call. Quite simply put, we would not have made it through this without you all. The way that you all rallied our town is a testament to the amazing people that YOU are. It is a privilege to call you our friends.

To our family - we love you all more than ever and wish we would have told you more often before now. We may have forgotten on occasion how hard this was on you as well - you were our rock when we needed you, our pharmacist on occasion, and our shoulder to cry on for both the good news and bad news. Thanks for being there always.

To Caitlin and Caroline - you are the best girls anyone could ever hope for. We love you so much and are amazed by how much strength you have shown. I hope you are as proud of yourselves as we are of you.

Wishing you all the happiest Thanksgiving.

Thank you, thank you, thank you - to all of you from all of us!

With Love,

Greg, Robin & Campbell

Update - 11/23

2009-11-23T18:02:00.002-05:00

Another week down and only 3 more treatments left after this morning! Campbell continues to tolerate them amazingly well. She has started losing her hair in the back where the radiation is being administered but the rest of her hair covers it for the most part and she is not affected by it at all!

Campbell and Robin headed up to Boston early on Sunday morning and made it in plenty of time for her appointment. This is the "short week" and they head home on Thursday morning. We will all have Thursday - Sunday together and then head back to Boston for her FINAL TREATMENT!

Thanksgiving will be at home with just the five of us and plenty to be thankful for.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

The Final Countdown has begun...

2009-11-15T19:36:00.002-05:00

Campbell is down to her final 10 treatments!!! We really can't believe that it has gone so quickly! The hair around her incision where they are giving her the radiation has started to thin considerably but is mostly covered by the rest of her hair and is only noticeable if you know where to look. She has not shown any signs of fatigue thus far (much to her mothers chagrin...).

After an uneventful week last week with her treatments and an even more uneventful weekend, Campbell and Robin headed back to Boston this afternoon. After a long week by herself last week, Robin's sister Kristin will be with her this week (along with Cam's cousin 'Mimi').

Thanksgiving week she will receive treatments Sunday - Wednesday and she and Robin will most likely head home first thing Thursday morning (rather than battle the traffic on Wednesday afternoon/evening) so that we can celebrate the holiday together. We certainly have much to be thankful for this year!!!

After the Thanksgiving "break" we will head back to Boston and are still on track for her final treatment on November 30th.

This morning, Michele from "Tutus for Tots" stopped by and brought Cam and her sisters their own hand-made tutus along with some other goodies. We also had a visit from Tara Gilvar who brought a GREAT book for Cam that was created by some 6th graders and is the brainchild of Gregory Lobo. It is a fantastic idea and Cam and the "girlies" have already had fun looking through it. Again, we are truly counting our blessings for having the wonderful people in our life that we do.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 11/8

2009-11-08T10:22:00.002-05:00

OK, so we have been pretty slack in updating the blog....sorry about that. But we have a good excuse..Cam is doing GREAT!!!! We will update at least once a week and if there is anything that comes up during the week. She is halfway through with her radiation treatments in Boston and is showing no noticeable side effects. She is tolerating everything very well and the vomiting episodes seem to be fewer and further between.

All of us were in Boston this past week from Tuesday - Friday. Robin and Cam went up on Sunday night (their normal routine) and Greg and the girls took the train up on Tuesday evening. It gave the girls a chance to see the facility and they actually got to go into the "monkey room" and watch them put Cam out for her treatment. Caitlin braved a bit further into the room than Caroline did and was able to look out and see the big part of the machine. We think that it was good for them to see what was going on and see that Cam did very well with it all. She absolutely LOVED having them there and it gave Robin a break from having to entertain Cam all afternoon long.

This afternoon, Robin and Cam head back north for week 4 of the treatments. If everything stays the same from here on out (the machine doesn't break, she doesn't get sick), Cam's last treatment will be the Monday after Thanksgiving! Fingers crossed....

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 10/30

2009-10-30T12:09:00.002-04:00

2 weeks down, 4 to go!!

Cambell completed her first 10 radiation treatments this week. The second week went as smoothly as it possibly could. The only catch was that they had a problem getting her blood drawn and had to send her over to Childrens Hospital. Once over there, they were able to get it without a problem so there is not a problem with the PICC line..whew....

On Thursday, they had trick-or-treating for the kids throughout the hospital. Campbell finished her day with some arts and crafts and ended up with quite the loot at the end of the day.

After Campbell and Robin arrive on Sunday night, Greg and the girls will follow them up on Teusday. This will give the girls a chance to see the facility and we can all spend some much needed time together as a family.

Only 20 more treatments and then this will all be behind her...

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 10/25

2009-10-25T08:13:00.002-04:00

Our apolgoies for not getting an update up since Wednesday....

Campbell came through the radiation treatments on Thursday and Friday amazingly well! We were actually able to take a walk to Boston Common (the park) and see the ducks from "Make Way for Ducklings" and have a picnic. Unfortunately, it didn't appear that the swan boats were running anymore so we will have to make a trip back in the spring to do that.

They took her in early on Friday as they had a cancellation. Unfortunately, one of the other little boys being treated was admitted for surgery :( Fridays are "prize days" for the kids as they get to choose something out of the toy closet at the end of every week. The closet is amazing and Cam was really excited about picking her puzzle. She also got to choose something out of the "sibling" closet for her sisters. They really do everything right up there (except baseball of course...) The positive side of all this is that we got to get on the road that much earlier and get home that much earlier to see the other girls. Caroline was so excited to see Cam when she got off of the bus!!!!

We had an uneventful weekend and today Robin and her mom will head back to Boston for week 2. We are praying that it goes as well as the end of week 1!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 10/21

2009-10-21T07:30:00.002-04:00

Cam started her radiation treatment on Monday up here in Boston. The three of us came up on Sunday evening so that we could be here bright and early Monday morning.

The process could not have been smoother. Campbell was excited to get back and see Nurse Rachel and was happy to go back into the "Monkey Room" where she receives the treatment (it's decorated with monkeys - unfortunately, most decked out in various Boston sports teams apparel). Because it was the first day, we were both allowed to go back with her - which provided as much comfort to us as it did for her.

Once they took her back, they almost immediately gave her the propofol and she was out. About 45 minutes later she was awake again and we were able to go back and be with her. It is pretty amazing how effecient they are. She was actually sitting up and eating some cookies when we got back to the room on Monday and was HAPPY!

While she was having her treatment, we met with Dr MacDonald and Dr McBride to review her treatment and to see the "field" that they would be treating. It appears that her right inner ear will be able to be avoided completely and MOST of her left as well. In addition, both of the hormonal centers in her brain will be avoided as well. If we were optimistic that the side effects would be minimal before, now that we saw these pictures (superimposed onto the pictures from the CT scan) we are that much more encouraged. We are still expecting some hearing loss in her left ear, but the extent of it may be minimized.

After some lunch, Campbell decided that she was going to throw up for a while. This made us both very nervous. When this continued for over an hour, we called the nurse and she ordered some Zofran. They had not given her anything with the anasthesia so that they could get a baseline as to how she would react (that would have been nice to know ahead of time) but will going forward.

On Day 2, she gave her the Zofran so we were optimistic about her not throwing up, but she still did - though not as often or for as long. Because they had given her the full dose of Zofran while she was sedated, they couldn't give more but Benadryl is also an anti-nausea medication so we ran to Rite-Aid to get that for the next treatments. The hope is that we come up with the right "recipe" to keep her feeling good. Because she isn't feeling well, she is not eating lunch which may be compounding the problem as well.

We'll now see what Day 3 brings but hope that we all are getting into a routine with this. Thank goodness it has not yet been a fight to get Cam to go there and about eating. Once we have to start fighting with her about that, it is a whole new ballgame.

Thanks to so many of you for your words of encouragment for this new adventureand support with the other girls back home. We love you all very much and could not imagine doing this without you

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 10/17

2009-10-17T22:19:00.003-04:00

After a quick trip to Boston on Friday afternoon for an MRI (quick if you consider the 11 hours in the car "quick"), we are ready to go back tomorrow evening so that Cam can be there at 9:15 Monday morning to start her radiation treatments.

We also got a call from one of the oncology team in Boston who, after much discussion with infections disease doctors, decided that after Cam finishes her current course of antibiotics through the IV, she will continue on antibiotics during her radiation with a liquid she will take twice a day by mouth. They want to be sure that stopping the medicine now does not allow the infection to come back and delay anything with her treatments.

Otherwise, we are ready to go. We are eager to get this started so that she can get this behind her as quickly as possible.

Thank you to everyone for all of the support you have provided us with up to this point. We are truly grateful.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 10/13

2009-10-13T13:57:00.003-04:00

Cam had a great weekend! If you didn't know she was sick you would not have been able to tell based on her behavior. She even made it for firetruck rides on Sunday ! We are all so relieved to see her acting so much like herself while we prepare for next week.

Friday starts the next phase in her treatment and we are praying that all goes according to plan and that the potential side effects are avoided as much as possible. At this point, if we expect the worst but pray for the best, we can only be pleasantly surprised, right?

The only surpise that we got this weekend was yesterday when the Home Health Care company that is providing her medication called to drop off additional antibiotics...we thought she was done as of yesterday and none of the doctors had let us know of the change. After speaking with the nuero-oncologist up in Boston, he told us that no one was very comfortable treating the infection on the conservative side was the best idea. So, Cam will continue on the IV medicine until the 20th of October (which comes out to about 6 weeks). She has tolerated it just fine - her parents on the other hand aren't big fans of the weekend 6am wake up call...

Your prayers have brought her this far, please keep them coming.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 10/9

2009-10-10T06:35:00.003-04:00

No news is good news.

Cam continues to make improvement every day. She had a visit to the park on Thursday afternoon exactly 7 weeks after being diagnosed. We hope and pray that the worst is behind her now.

The radiation treatments will begin on Monday, Oct 19th up in Boston. We got a chance to see the proton beam equipment on Tuesday while we were there and it is AWESOME. There are 2 rooms with the machines that actually shape the beams and one cyclotron. Each machine is 3 stories high and looks like something out of Star Wars. Campbell will be sedated for the treatments so she does not move at all. Each one will take approximately 30 minutes but when you add in the sedation it will be most likely at 2 - 3 hour event.

She will receive treatments Monday - Friday for 6 weeks (or 30 treatments). When you pad this a little for holidays (Thanksgiving and Verterans Day are in there) and allow for the machine to breakdown (which we understand it does do from time to time) that will have her finished by the first week in December. During the treatments she will continue to be seen by the radiation oncologist (MGH) and neuro-oncologist from Childrens Hospital. They will also stay in constant communication with the other doctors both in Boston and at home to keep them filled in as to what is going on. It is such a relief to have her care managed so well right now. No doubt she is going to have this all behind her before we know it.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 10/7

2009-10-07T06:24:00.004-04:00

Yesterday's visit to the Proton Beam Center was, simply put, AMAZING! The people were absolutely wonderful and so good to Cam. The entire experience put our minds at ease as to whether or not we were doing the right thing.

Today, she will have the CT simulation and we will meet again with the team of doctors/technicians/nurses that will be caring for her during the treatment. This meeting will discuss further the process, side effects, timeline, etc. for her both immediate and long term.

As difficult as it will be for us all to be separated for the next 4 - 6 weeks, we are sure that this is the best treatment plan for Campbell with the most optimistic results. The chance of regrowth of the tumor is only 20% using this treatment - 80% is a REALLY good number for anyone. When you add in the prayers and positive thoughts and support she continues to receive, there is no doubt that her success rate will be much higher.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 10/5

2009-10-05T18:17:00.003-04:00

Cam had a good morning this morning and a not so good afternoon as her vomiting returned. We are hoping that it was because she slept through her dose of pepcid yesterday. We spoke with the neuro-oncologist today and since we are going to Boston TOMORROW anyway, she was content to watch and see since there was no fever associated with it (or at least very low grade).

The visit tomorrow was a last minute change to our schedule which we did not expect. We got a call from Dr MacDonald- the radiation oncologist - (add her to the list of doctors caring for Cam) who wanted to get some of the preparation appointments out of the way so that Cam could start the radiation treatment as soon as possible. This is good news as the sooner she starts the better the results. So we will meet tomorrow early afternoon with the anasthesiologist and one of the nurses at Mass General Hospital. She will then have a CT simulation on Wednesday morning. This is a simulation of the treatment that she will get but with no radiation involved. They will then use this to map into the machine her treatment, location of radiation dose, etc. It's pretty high tech and intimidating stuff but they treat many patients with this and the results thus far have been positive. The protons slow down faster than the normal photons and the hope is that the side effects and damage to surrounding organs/tissues is minimized - which is really good especially if you are radiating the brain of a 3 year old. The potential upside was enough to sell us on it.

Then on Wednesday afternoon we will meet with Dr MacDonald to have a more in depth discussion of the treatment, side effects, schedules and time lines. This is going to be a VERY difficult discussion as it will no doubt be much of the worst case scenarios.

Yesterday's Ride for the Cure was a huge success! We continue to be amazed by the generosity of our family and friends. Thank you to everyone who came out to support Cam - EMS Angels MC and their fellow clubs, Bernardsville Fire, Bernardsville HS (thank you Scott Gunderson for your work), our family and friends...the list goes on and on and we can never thank you all enough. We are truly blessed to have you all in our lives.

With Love from HOME,

Greg, Robin, Caitlin, Caroline & Cam

Update - 10/2

2009-10-02T17:39:00.002-04:00

SHE'S HOME!!!!!!!!

We left Childrens Hospital this morning around 10am and were home by 2:30 with no traffic...maybe our luck is changing....

She had her first dose of antibiotic through her PIC line this afternoon around 4:15 with the home care nurse here to ensure that all of the supplies had arrived and to review with us again what needed to be done.

Caitlin and Caroline are so happy to have her home and we are really pleased to all be under the same roof again.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update #2 - 10/1

2009-10-01T22:01:00.002-04:00

Campbell is scheduled to be discharged tomorrow morning!!!! We were able to see the home care representative this afternoon - after some concern that they would not be available until tomorrow afternoon. The antibiotic and other miscellaneous equipment for Cam is going to be delivered to the house tomorrow afternoon.

Cam remainder fever free all day today and her eye exam was perfectly normal. Her transfusion was also uneventful - which is really good.

Discharge should be early in the AM! Then we will be back next week for our meeting with the radiation oncologist Thank you all for your encouragement and prayers.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 10/1

2009-10-01T12:19:00.003-04:00

Happy October everyone!

Despite the 2 vomiting episodes last night, Cam still remains fever free. The doctors are still not concerned and seem to think that the vomiting was stress related. The transfusion will be done after her eye appointment this afternoon and will go late into the evening - not a big deal for her other than the fact she will need to be "plugged in" for a while. Assuming there are no complications with the transfusion, we will be busting out of here tomorrow!

BTW, if anyone spots September laying around, we were wondering where it went...

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/30

2009-09-30T21:26:00.002-04:00

While Cam did not have any tests scheduled today she did her best to keep us all on our toes and keep it from being an uneventful day.

This afternoon, she vomited. Under normal circumstances, this would not be a big deal. However, given her history we were immediately concerned that this might be a bad sign. The doctors, on the other hand, were not immediately concerned. Given that she had just had the MRI last night, the fear of increased pressure (hyrdocephalus) was not high with them. So we continued the rest of the day relatively normally. Then tonight she threw up again. No word on what this means to the doctors but I am inclined to think that it may be OK with them again given their previous explanation.

We are not sure if this will change the plans to discharge her on Friday. She was not running a fever associated with the vomiting so hopefully it won't. However, we have seen multiple times already as we go through this, the discharge date is not firm until you are pulling out of the parking lot with her safely strapped in to the car seat.

Tomorrow, she is scheduled for an opthamology appointment to get a baseline eye test before the radiation starts. They are also planning on giving her a transfusion in the afternoon when she returns as she is still anemic and they would like to get that number up in the normal range before radiation as well.

We'll hope for a quite night tonight and see what tomorrow brings.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell.

Update - 9/29

2009-09-29T22:45:00.002-04:00

Campbell was fever-free all day today! This is great news! If this trend continues, the stay here in Boston could be only a few more days.

She had an MRI this afternoon and that will get read tomorrow morning. This should show if there is any abscess in either her spine or head. At this point, they don't think that there is but we want to be sure that there are no pockets of infected CSF that could cause the fever to continue and require some type of surgical intervention.

Her spirits remain high considering all she has been through. She played for quite a while this morning in the playroom. Unfortunately, they now have her on contact precautions due to the original MRSA test that came back positive - despite 2 subsequent negative tests. So no playroom for her tomorrow and we will try to keep her occupied in her room all day.

We will hopefully be meeting with the radiation oncologist tomorrow or Thursday to figure out the logistics of the radiation treatment.

Thanks to all for your continued prayers and support!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/28

2009-09-28T23:12:00.002-04:00

Last night, Campbell was fever free! Her fever did creep up close to 100.3 but it brought itself back down again. We were discharged from MMH this morning at 5am and began our journey up to Boston to Childrens Hospital - Boston.

We met this afternoon with one of the neuro-oncology team who recommended the proton therapy for Campbell. This is based on the location of the tumor (and the surrounding sensitive functions - hearing, sight, memory, etc) and her age. Essentially, what the proton therapy is able to do is take the same dose of radiation and direct the matter in a very precise location while minimizing the side effects. That is is the theory. There is not too much data to base this on but the experience that they are seeing thus far, supports the theory. I think for us, the decision is mainly based on the potential upside even being present. The potential side effects may be similar to "regular conformal" radiation using photons, butthe potential upside is what really made our decision.

This was a HUGE decision for us. We want to get the best care for Campbell that we can and understand that there are sacrifices that will be made by all of us to make this happen. There is no way that we could have made that decision without the support we have received from our family and friends over the past 6 weeks.

They are still looking for the source of the fever. Tomorrow morning they will do an MRI (unfortunately Cam needs to be sedated for this) to see if they can locate any abcsess. Based on the images that we brought with us the neurosurgery team does not seem to think that they will find anything. If they don't we will most likely do another LP (spinal tap) to see what is going on with the white cells. Hopefully, this will show nothing and they will send us home on the current antibiotic regimen. It will also allow them to see if the bacteria is developing any sort of resistance to the current antibiotic and that they need to change it. This is all about what we expected.

For now, it appears as though we will be here until Friday. This will give them sifficient time to relaly see Cam and make some decisions regarding her care. They would like to start the radiation potentially next week but, as they did while we were back home, want to wait and get the infection under contol before doing anything.

We are glad to have the new eyes looking at the problem. Even though we have had to tell her story hald a dozed times already today, we are hopeful that it will lead to some resolution for her.

Please continue to pray for Campbell as we get closer to the next step in her treatment. Please also pray for Caitlin and Caroline that they have strength while we go through this together.

With Love and Grattitude,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/27

2009-09-27T08:20:00.002-04:00

Thankfully, we had a relatively quiet day yesterday. Cam did have a slight fever 100.7 during the afternoon but that was it all day. The plan remains to bust us out of here first thing in the morning on Monday for our trip to Boston.

Caitlin and Caroline were up yesterday afternoon and we were all able to spend some time together, have dinner (Cam's favorite - tacos) and laugh a bit.

All together, a good day...

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/26

2009-09-26T09:06:00.003-04:00

Our apologies for the lack of an update yesterday. There was a flurry of activity regarding Campbell so we didn't get a chance...

...So much for a Friday discharge....

Unfortunately, the fevers have continued over the past several days. Not extraordinarily high, but a fever none the less.

The CT from Thursday came back "normal".

Yesterday morning, Campbell went down for another spinal tap. This was, in theory, supposed to verify that the white cells in her CSF was continuing to trend downward and be only a formality before we went home. However, as we have all learned, theory does not so much apply to Cam. The white count actually went up (commence head scratching by doctors...) to 222 from 100 only days before. This leads them (ID and oncology) to believe that there is some sort of abscess in the surgical site that may be leaking fluid and causing the infection/fevers. In order to verify, they asked Dr Mazzola to drain some of the fluid from the site (using a fine needle) so that they could look and see if it was "puss" from a leaking abscess. Unfortunately, Dr Mazzola disagreed with their assessment and has declined to perform the procedure (yes, she apparently CAN do that).

The plan for the past week is that we go to Boston on Monday to consult with the radiation oncologist at the Dana-Farber Cancer Center regarding proton beam therapy. This trip has been put off multiple times now because of Cam's subsequent admissions (for the shunt placement and subsequent removal). They assured us all week that we would be home in time to make this weeks appointment. Based on that, we made plans and arrangements to drive up on Sunday morning as a family (novel concept, I know), spend the day in Boston sightseeing and relaxing a bit, going to see the Dr on Monday afternoon and come home on Monday afternoon/evening.

So, after the procedure could not/would not be done here, a call was placed to Dr Kieran in Boston. He has agreed to admit Cam into Boston Children's Hospital (BCH) on Monday after our meeting with him. The neurosurgery team will then review her case, have a look at Cam and decide what they would like to do. A couple of things could come out of this visit:

1) BEST CASE SCENARIO (we can hope, right?): We get to Boston, Dr Kieran looks at her, the fever is gone and he says go home and stay the course of antibiotics that she is on. Follow up here over the next several weeks and we come right home.

2) SCENARIO 2: We get to BCH, they look and AGREE with Dr Mazzola and do not biopsy it - we go home and stay the course of antibiotics that she is on. Follow up here over the next several weeks and come right home.

3) SCENARIO 3 - We get to BCH, the do a biopsy and it comes back clear. We go home and stay the course of antibiotics that she is on. Follow up here over the next several weeks and come right home.

4) SCENARIO 4 (WORST CASE): The biopsy comes back positive with infection from an abscess. If that is the case, they will need to insert a small tube into the site to drain fluid and also to be used to inject antibiotic directly into the site to clear up the infection. Because of the drain that would be external, she would have to remain in the hospital during the 10 - 14 day course of antibiotics. The admission and procedure would all take place in Boston. This would not necessarily mean that we would need to stay in Boston for the radiation as well, but definitely would be there for the 10 - 14 days that they were draining and treating the abscess.

Regardless of which scenario we end up with, it looks like we will be staying in Boston on Monday night. We are currently scheduled to be discharged from Morristown on Monday morning around 5:00am so that we can start our journey to Boston (in the middle of rush hour - nice of them, don't you think?). Our appointment with Dr Kieran is at 1:00pm and then we will head right over to BCH to be seen by that team.

We are relieved that they are sending us to a new objective set of eyes. At this point, Cam has spent 10 days on the admission in the hospital and is still running these fevers sporadically. Luckily, she is really acting like Cam. She laughed with Dr Porter this morning when he came in. Last night, her nurse gave Cam a brand new stethoscope to play with and keep as well as a syringe (no, not with the needle) to pretend with on her dolls. She ate all of her breakfast today and is really looking and acting like herself which is a tremendous relief.

We continue to hope and pray for her recovery so that she can move on to the next phase of treatment and put this all behind her very quickly.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/24

2009-09-24T08:12:00.002-04:00

Campbell had a great night last night. She played with "Nanny" while we both made it to back-to-school night at Caitlin's school. It was actually rather odd to be together somewhere other than the hospital. She did not have a fever all night so we are hoping that means she can venture outside her hospital room today to play a little bit. You have to be 24 hours fever free before you can go to the playroom.

On schedule for today is a CT of her head to make sure that the ventricles are in the right configuration or if there is excess fluid accumulating somewhere. Unfortunately, this requires contrast to be adminstered to get a clearer picture. Why is it unfortunate, you say? After all, she does have a PIC line so they can just give it to her through there....NOPE!!!! Some doctor, in their infinite wisdom, have given her a different type of PIC which is not compatible with the contrast despite the fact that there is one that can perform all the functions that she needs (sedation, IV antibiotics, and contrast). This would seem silly under normal circumstances but since she is going to have mutliple CT scans during the coming treatment, it seems particularly short sighted of them. Needless to say, we are quite upset that Cam has to get ANOTHER poke today for this. She had been really perking up and this is just another thing that is going to upset her.

As of this morning, we are still on track for discharge on Friday. The plan is to get another spinal tap on Friday morning and perhaps an MRI - depending on what todays CT shows. Then she can go HOME!!!!

You are all being so generous with your prayers, if you could just add one little one for her to get home on Friday, she would really appreciate it (and her parents wouldn't mind so much either).

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/23

2009-09-23T09:05:00.002-04:00

We had a great day with Campbell yesterday. She slept at night and actually talked to the people that came into her room (including doctors and nurses!!!) She painted a picture in the morning with one of the child life people and even painted one for Dr Mahmoud (it's hysterical to listen to her say his name).

She played most of the day and was up out of bed playing with the girls when they got there after school. She is also not on an IV fluids except when she is taking her anti-biotics which gives her a little bit more mobility than she has had. The PIC line location is still pretty sore but she seems to be adapting.

Then last night, around 8pm, she spiked a fever of 103.8...which through all of us for a loop. We'll wait and see what the doctors have to say about that this morning and how that is going to effect the next few days. We are hoping it just means that they switch her back to the original antibiotic which seemed to be controlling it, but we will have to wait and see...as usual. Her fever was down this morning (around 100.5) so we'll hope that last night was just a blip on the radar.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/22

2009-09-22T08:00:00.002-04:00

Campbell was moved out of ICU yesterday afternoon and into a "regular" room. Campbell continued to run a fever through the night but this morning it was gone. It was back again late morning/early afternoon. Dr Mazzola was in first thing this morning and was concerned that the swelling in the back of Cam's head was a little more than it was yesterday. She wasn't yet alarmed but we will continue to watch it.

Dr Beyorda was also in and was pleased the the white cells in the spinal fluid taken yesterday were significantly lower than before (100 vs 1000 in the previous tap). As of this morning, the culture had also not grown anything which is good news. They are going to ensure that nothing is growing for 72 hours before making the decision on what day to send Campbell home. As of right now, it looks like Thursday at the earliest. If the culture comes back positive, they will want to do another spinal tap on Friday.

We also got visits by Dr Mahmoud, Dr Thomas & Dr Kohn which really makes us feel good that they are all keeping such a close eye on her.

She had a good night last night and got some sleep. She has been up painting today, played Go Fish with Dad, ate some breakfast and all of her lunch, watched who knows how many movies and is really looking good. We'll hope that the trend continues. While the original plan was 72 hours fever free before discharge, if she continues to make improvement, we are hopeful that she can go home if, heaven forbid, she still is running one on Thursday.

Thanks for your continued prayers!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/21

2009-09-21T07:35:00.002-04:00

Campbell had a really good weekend. The doctors and nurses are almost as happy to see her feeling better as we all are. She was up early yesterday to go play in the playroom and walked all the way there. Dr Gregory stopped by to see her and was really pleased with how good she looked. She sat up in the chair for a while watching a movie and reading a book and had a good shower in the morning (we were finally able to get all of the adhesive residue off of her from the past month).

She had been fever free for almost 48 hours when she spiked a 102.7 just to keep everyone on their toes. It resolved with Tylenol and the doctors are no overly concerned with it unless it begins to come more often again. Dr Mazzola was also by and is not concerned with any swelling in the back of Cam's head where the first incision was. This means that we are moving further away from the prospect of having to re-insert the shunt.

This morning, she will be downstairs to have her PIC line placed and also have another spinal tap. The PIC will allow us to adminster IV antibiotics to her from HOME, have her sedated during the radiation without continually having to get "poked" and also have any subsequent blood tests taken without having to stick her. The spinal tap will give them a look at the white cells and bacteria in her CSF and tell them if the infection is on the way out. They'll want to wait 48 hours for the cultures to grow anything but depending on what it shows, we could have her home again by Wednesday!!!

Just to keep us from getting bored with the current medical situation, Caitlin fell on Saturday night and broke her collar bone...no, I am not kidding. She is feeling better and only needs a sling for the next month (thank goodness no surgery...). We are wrapping Caroline in bubble wrap for the next 6 months.

With Love,

Greg, Robin, Caitlin, Caroline and Campbell

Update - 9/19

2009-09-19T06:48:00.003-04:00

Campbell had a great afternoon yesterday and a really good night last night!

She played with Nanny (having a preschool teacher as a grandma has its perks), then Lizzie Mac, her cousin, came to visit. Probably 4 hrs of playtime this afternoon - wagon ride, play-doh, Memory, Go Fish, Candyland, Wii Sports, foosball, dominos. She made the nurses and doctors all smile! They've never seen her happy. They kept saying what a beautiful smile she has - they'd never seen it! She even walked from her room down to the "play room." It isn't too far away but far enough that we are all happy to see her do it!

Last night she slept almost the entire night. She was up at around 3 and took some Tylenol. She was due for more medication that 4am but since she was sleeping so comfortably they didn't wake her up to give it to her and she slept until 6am when we had to wake her up to take it or no doubt she would still be sleeping.

They now have her on a drug called Diamox which is being used to control the amount of CSF that is being created. This will keep the pressure in her head low while they wait for the inflammation to subside. They did not put her on steroids as well as Dr Mazzola does not appear to be a big fan of their side effects. Once the swelling has gone down, they will gradually wean down the dosage of this to ensure that her brain is able to reabsorb and/or drain the fluid properly. If not, then we are back to talking shunt but they are somewhat optimistic given her current condition and disposition.

Today, the rest of us - minus Cam :( -will be headed to Caroline's first cheerleading game. It will be the first time since Cam has been in the hospital that one of us has not been there with her. For those of you keeping track at home, since August 20th, she has been in the hospital all but 5 days (and one of those days we spent the morning there for a spinal tap, one for the gallium scan, and one for the abdominal CT). Needless to say, we are excited to be out of the hospital together and able to give our undivided attention, at least briefly, to the other girls. They have been so good through all of this and we miss seeing them all the time.

Keep the prayers coming! They have brought her so far already and she has a long road ahead.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

9/17 - Update #3

2009-09-18T07:18:00.003-04:00

Campbell came through the surgery just fine and was back in her room about an hour after they took her. The procedure only took about 15 minutes but the whole process (getting her to sleep, getting her hooked up to all the monitors, etc) took some additional time. We did have an issue with pediatric vs. adult anasthesia again (apparently the pediatric anasthesiologists need their beauty sleep) but other than Cam waking up a "little agitated" there were no other problems. The only concern Dr Mazzola has is that when you get upset like that, there is an increased pressure. She did not externalize the shunt so Campbell now has no foreign objects in her head at all which should help clear up th einfection pretty quickly.

So we begin the nerve-wracking experience of watching to see how her brain handles all of this. If there begin to be signs of increased pressure, they will have to rush her back down to place the drain and then later place the shunt again. There is about a 50/50 shot that this will be the case but we are hoping that she was on the wrong side of so many of these statistics over the past month that this is her chance to get on the right 50% (speaking of 50/50 did you all get a chance to purchase your Bernardsville Fire Dept 50/50 tickets?)

It looks like she will be in the hospital at least until next Friday, 9/25) but we hope making signifcant progress along the way.

Your thoughts and prayers continue to be felt by us all. Thank you all so very much!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

9/17 - Update #2

2009-09-17T16:34:00.002-04:00

The results of last nights tap is in and it did grow bacteria (hooray?) So tonight they will be removing the shunt from Cambells brain. We have not yet seen Dr Mazzola this afternoon so we are not sure if they are going to externalize the shunt and then put the permanent one back in at a later date or if they are going to just remove it completely and start her on a drug treatment to reduce the amount of spinal fluid being created and minimize swelling in the brain.

The silver lining is that they at least have located the source of the infection and can now work on resolving it.

She goes back to the OR tonight at 9pm. Please continue to keep her in your prayers but say a special prayer for her and her doctors tonight.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/17

2009-09-17T07:38:00.002-04:00

Last night, Dr Mazzola came in and took a sample of spinal fluid from the shunt site in Cam's head, which was originally scheduled for this morning. Generally, it is within the first 24 hours that something will grow but 72 hours before they can officially say it is clear of infection. As of 7:30am today, nothing had grown on the culture that was sent down. The white count was still elevated but some of the other markers were "within normal range." If this ends up growing something, the shunt will definitely need to be taken out.

We aren't sure exactly what to hope for at this point in regards to the cultures. If they grow bacteria, at least we have an answer. However, we would hate for Campbell to have to go through any more surgeries.

Campbell didn't sleep very well last night. What little sleep she did get wasn't very restful. However, this morning she woke up with NO FEVER. She has not had any Tylenol since 3:15 yesterday afternoon and the fever is back to trending down. We'll grasp onto this good news and hope it is indicative of more good news to come.

As a side note, we met with the "EMS Angels Motorcycle Club" (www.emsangelsmc.com) on Monday night. Mark, Greg's brother, works with one of their members and when he was filling her in on Campbell's situation, she jumped on the chance to do something for her. They will be hosting a motorcycle ride on October 4th. Even if you do not ride, there will be food, a DJ, door prizes, etc (check in for riders is 9:00 - 11:15 and non-riders start at 12:00). The proceeds of the ride and party afterwards will benefit Cam. It is a rain or shine event and more information can be found on their website. The event is being held at the Mood Lounge in Union, NJ (1998 Morris Ave). We are hoping that Campbell is feeling well enough to make an appearance at the event. If not, one or more of the rest of us will be there. We are amazed at the preparation that they have put into this event and are awed by their generosity for a stranger.

We'll keep everyone posted as they come back with "culture updates" throughout the course of the day.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/16

2009-09-16T16:41:00.002-04:00

Cam is still in the PICU at MMH. They seem to be getting closer to identifying the source of the infection in her spinal fluid. While they are treating it as bacterial meningitis, they are still looking for ground zero. The current thought is that the shunt that was placed may be the cause. While it would be great if they could identify it, the treatment from there is not something to look forward to.

Tomorrow morning, Dr. Mazzola will be back in and will take a sample of the fluid from the shunt location which they will send for culturing. If something grows based on that and it is the same bacteria that they have found during the spinal tap, then the next discussion will be whether to remove the shunt, externalize the drain (similar to what she had immediately after the tumor was removed), wait for the infection to be cured, then replace the shunt. This is about a 2 week procedure and would involve Cam being the in the hospital the entire time.

The alternative would be if they decide to treat it with antibiotics only. If that is the direction that they choose, they would consider putting in a pic line and letting Campbell go home on the IV antibiotics. We would just administer them here and no doubt bring her in once a week for them to look at her.

Boston is on hold temporarily as is the beginning of any radiation treatment until they are able to get the fever/infection under control. No one wants to consider starting the radiation while she is still sick.

On a positive note, Cam was up and acting GREAT this afternoon. She was smiling and laughing and was out of bed and sitting on the chair watching a movie. That makes the whole process a little bit easier. When she was really feeling and acting sick, it tore our hearts out.

Hoping and Praying for better days in her future!

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/15 - 5:00pm

2009-09-15T16:49:00.003-04:00

In keeping with her trend of stumping everyone around and keeping the doctors guessing, the cultures that were taken yesterday during Campbell's spinal tap were growing bacteria this morning. So, Campbell has been admitted back to the PICU at Morristown Memorial Hospital to be treated for bacterial meningitis (yes, the one they didn't think it was yesterday).

They did an additional spinal tap this afternoon to send off for cultures to ensure that yesterdays "slide" was not contaminated and as such providing a false positive. Unfortunately, before they will be willing to release her with a negative result, the cultures need to sit for 72 hours. Generally speakingl, if something is going to grow, it will be early so ideally tomorrow we will have an idea as to what to expect. They have put her back on IV antibiotics and she will remain in isolation until she has been on them for 24 hours. Incidentally, after being without a noticable fever over the past 48 hours at home, Cam's fever showed at 102 when she was admitted today...WTF?!?!?!?!

If the cultures do come back negative, they may then take a sample from the shunt location to see if that is what is causing the elevated white cell counts in her spinal fluid. If it is, they would then consider removing the shunt and watching to see how she responds. But that would involve an additional surgery and obviously additional time spent in the hospital.

We enter yet another phase of "patiently" waiting to get the results of more tests. Please continue to pray for Campbell as she enters this phase of her recovery - that the Lord may guide her doctors and nurses and lay His healing hand upon her once again.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/14

2009-09-14T16:42:00.003-04:00

Campbell continues to make improvement every day. While last night was a little hectic (she is all about the midnight snacks and having Mommy in bed with her), she woke up this morning with no fever to speak of. She is still a a little high but not enough for the doctors to call a fever. I thought you might enjoy seeing a recent photo of her progress..yes, she still has all of her hair and much to our surprise, she does still smile!!

This morning we were up and out early to get Campbell up to the hospital for her spinal tap. Despite her request last night that she "not get any more 'pokes'", they had to give another IV this morning to sedate her for the spinal tap. All things considered, we were happy that she not have to undergo the trauma of the spinal tap while someone tried to hold her still. As usual, she was a trooper and came through with flying colors.

They got some preliminary test results back from both the spinal tap and the blood work (luckily they took the blood while she was sedated so she didn't have to endure 2 pokes). The blood work still shows that she is somewhat anemic which remains somewhat of a concern for them. The iron supplement that they gave us last time we left the hospital is not going well so we are going to try chewables instead. They will continue to watch this as we move forward.

The spinal fluid showed a high number of white blood cells. Based on these results, they have asked that we watch closely for signs of neurologic decline. If she continues to improve as she has over the past several days, and if the cultures on the fluid that they are now doing fail to grow anything - it would point to the aseptic meningitis diagnosis that we have mentioned previously. An increase in her fever back to 103 again would win her a steroid treatment.

If she does start to have some neuroligical symptoms, this could point to bacterial meningitis. If that is the case, she wins an admission back to the hospital for IV antibiotics. They do NOT think that it is bacterial as none of the previous cultures/scans/labs/etc have shown that. However, they have to watch it based on the number of white cells they found today.

This Thursday, we will be making a day trip to Boston to Massachusetts General Hospital to meet with a new pediatric oncologist, Dr Kieran, to discuss conformal radiation vs. proton beam radiation. During this meeting, we will get additional information on Cam's treatment to help us try and decide where and which treatment she will be receiving. He will be reviewing the mounds of paperwork and test results that we have received over the past month and give us his opinion on the options available for her. While we have the utmost confidence in the team here, our goal is to get Cam the best treatment available and the best chance for a full recovery.

We will also be meeting with the radiation oncology team at the cancer center at Morristown Memorial to let Campbell see the facility and to speak with them regarding the side effects of the treatment. This is going to be a scary meeting for all of us as they lay out the worst case scenarios but is a "necessary evil". We will anticipate the worst but hope for the best as we move forward.

Many thanks for your continued thoughts and prayers. They are felt by all of us and we hope to someday be able to repay you all.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/13

2009-09-13T10:17:00.002-04:00

Campbell woke up this morning with NO FEVER!!!!!!!!!! We will be heading out to church this morning to thank God for His healing power and for our friends and family who have been supporting us through this ordeal.

One clarification regarding yesterdays post - Cost is not an object for Campbell's care and we did not mean to imply that was the case. The point was more that the additional cost of the proton therapy may not be outweighed by the benefits of it. If that is the best place for Cam to go to get treatment, we will be there. We will deal with getting insurance to pay for as much as possible and will cover the rest if that is what is needed to get her better.

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/12

2009-09-12T06:56:00.002-04:00

The CT scan yesterday came back NORMAL. This is good news in the respect that it did not show any other cancers in her belly or an abcess that would require surgical intervention. The bad news is that we are no closer to finding a cause of her fever now.

I spent quite a bit of time yesterday on the phone with both Dr Porter/Dr Kohn and also Dr Fritz. Earlier in the week, the oncology team was pushing for Campbell to be put on a course of steroids. The thought was that aseptic meningitis was causing some swelling which was causing many of her symptoms. Yesterday, they had backed off of that recommendation with the hopes that over the next several days this will start to resolve itself. The side effects from the steroids would not be worth the results that we would see from them. So we will continue to wait for Cam to start improving.

Monday will bring some more information on the next steps in her treatment and recovery. She is scheduled for spinal tap #3 in the morning and then we will meet with the oncology team to discuss the radiation treatment plan. From the initial conversation, it seems that the radiation CAN be done at Morristown Memorial. They are sending the information out to several "quality control" specialists to make sure that this is the case. If not, they will recommend additional sites for us to speak to. In addition, they are trying to set up a consultation up in Boston regarding the proton therapy treatment. Their thought is that the side effects from "conforming radiation" vs "proton beam radiation"are not significant enough to warrant uprooting the family for 8 weeks. The cost is also a potential issue if it is not a in-network treatment. We will discuss this all with them on Monday morning and no doubt will come away from our information session with hundreds more questions but are very happy that we are seeing some movement on her treatment. We know that you don't want to rush the process but it was getting rather frustrating not hearing anything.

This morning, she was up very early looking for waffles which she did eat. She has not had tylenol since last night around 8 pm and her fever is less than 101 this morning so we are cautiously optimistic that it may be going away like the doctors had hoped for. More encouraging still is that she is behaving a little bit more like herself. She walked into our room on her own and has been smiling more today. You can imagine our joy to see her little smile again!

With Hope and Love,

Greg, Robin, Caitlin, Caroline & Campbell

Update - 9/11 - 9:00am

2009-09-11T09:18:00.002-04:00

We received a call from Dr Porter this morning with the results of the gallium scan yesterday. The scan shows white cells in two places - 1) her head by where the shunt is which is not surprising and 2) in her abdomen. So, Cam will be back off to the hospital today in order to get a CT of her abdomen (which they wanted to order last week but held off on due to concerns about the amount of radiation she has already been exposed to and will be going forward).

Once they read that, we will figure out what next. In the meantime, we spent about 30 minutes on the phone with Dr Porter last night discussing her condition and future treatment. We are confident that everyone is on the same page but are growing frustrated with the lack of a plan. Hopefully that will change today as the oncology team is waiting to receive an email from one of the doctors at Boston Children's Hospital in regards to her treatment. We get the impression that they are leaning towards at least having us see the doctor up in Boston for a second opinion and also perhaps doing the proton therapy up there.

Once the CT results come back, we'll know more...

With Love,

Greg, Robin, Caitlin, Caroline & Cam

Update - 9/10 6:30pm

2009-09-10T18:27:00.003-04:00

Campbell did not have to be readmitted despite the vomiting incident last night. She did go for her test as scheduled and we should have the results of that test within the next 24 hours.

One new revelation is that one of the blood tests that came back showed that the cause of the fever may be "walkin pneumonia." The reason that the antibiotics she was on all last week did not have any effect was that they were both penicillin derivatives which will not target that bacteria. Dr Porter is checking with the team about putting her in zythromax to see if that doesn't start to correct things.

More to come tomorrow no doubt...

With Love,

Greg, Robin, Caitlin, Caroline and Campbell

She's HOME!!...for now....

2009-09-10T09:37:00.002-04:00

We were finally able to bring Campbell home yesterday afternoon around 4:00pm. While she is still not feeling great, we think she was happy to be home and around her movies and toys. Caitlin and Caroline (her girlies) were certainly glad to have her home.

Here are the list of doctors that are currently treating Campbell- that way I don't have to keep spelling neurosurgeon and pediatrician:

Dr Porter - Cam's pediatrician
Dr. Koyne - Cam's pediatrician
Dr Kohn - Cam's pediatrician
Dr. Mazzola - Director of Pediatric Neurosurgery
Dr Fritz - Oncology
Dr Gregory - Oncology
Dr. Miller - Oncology
Dr. Mahmoud - Director of Oncology
Dr Beyorda - Infectious Disease Specialist

She actually ate some dinner last night and a bowl of popcorn, which was encouraging. However, she continued to maintain the fever all evening and through the night. We had a long night with her as she was up most of the night complaining that she had some pain in her belly. That coupled with the fever did not make for a restful night for any of us. She ended up vomitting very late/very early (depending on how you look at it) - which is one of the many things that the doctors did NOT want to see. So this morning, we have a call in to Dr. Porter....we are hoping that this does not mean another admission to the hospital.

The gallium scan is scheduled for this afternoon at 3pm. We have requested a pediatric anesthesiologist at Dr Mazzola's insistence. If when the time comes they do not have one available, Robin is supposed to put her foot down and insist they get one. Dr Mazzola has spoken to the director of the anesthesia department and told us to drop his name or tell them to get him on the phone. It is sure nice to have her in our corner!

So we anxiously wait for Dr Porter to call back and advise what is next for our little friend. I am praying that we end up with another night at home...

With Love,

Greg, Robin, Caitlin, Caroline & Cam

Update - 9/9

2009-09-09T14:52:00.002-04:00

Cam is coming home!!!!!!

The doctors have finally decided that since she only has a fever at this point, it is safe for her to be discharged home. They are still stumped as to what might be causing the fever.

Yesterday, Campbell had an injection of some radioactive material in preparation for tomorrows test (which can be done outpatient despite her having to be sedated and intubated). This test will hopefully show where the infection is. However, Dr Fritz (one of the oncology team and our pediatricians wife) does not feel as though it is gong to show anything. We have asked Dr. Porter to please be sure to do the dishes and take out the trash for the coming weeks so that his wife is in a happy mood while she treats Cam!

Cam is also scheduled to have another spinal tap on Monday (the 14th) . We orignally thought that this was NOT going to be necessary after it was done in the OR last Monday. However, while that scan did not show any metastesis of the cancer, there were some "atypical cells" identified. This has led to some speculation that the fever is a result of aseptic meningitis. The new spinal tap will allow them to determine if this is the case.

Hopefully one of the two upcoming tests will help identify the source of the fever and allow them to treat it once and for all. Tonight, we will need to watch her closely to make sure there is no neurological decrease and that the vomiting does not return. If so, there are 3 phone calls to make - Dr. Mazzola, Dr Porter and Dr Fritz - and then a ride back to the ER.

Her coming home is so comforting for all of us. We will all be under the same roof for only the 4th night in 3 weeks which will help everyone resume some sort of normalcy. Caitlin and Caroline will start school tomorrow and we were very concerned that we wouldn't be able to be there to see them both off. Campbell will be able to sleep in her own bed and play with her own toys and we hope that this lifts her spirits as well.

Thanks so much to all of you who have been praying for her and our family during this trying time. The support we have received has been more than we deserve and we are eternally grateful.

With Love,

Greg, Robin, Caitlin, Caroline and Cam

Update - 9/8

2009-09-08T16:00:00.002-04:00

It has now been 24 hours since Cam was taken off all of the antibiotics. Unfortunately, her fever is not gone. Fortunately, her fever is not gone...confused yet?

The fact that it has not gone down does seem to indicate that the antibiotic was not causing the infection nor was it an infection causing it. Her white blood count remains normal. Had it been an infection we should see an upward trend with those numbers...sounds logical, right?

She is now scheduled to have a Gallium scan on Thursday. Robin is eager to get her home and is hoping to get her released tomorrow and have the scan as an outpatient procedure. We are looking to the doctors for some guidance here and will follow their advice.

The Gallium scan is similar to the Indium scan...they both mark the white cells and trace them in the body to see where they are going to fight infection. If this scan shows nothing, Post Fossa Mutism Syndrome is a possibility. This is a potential side effect from the surgery and could be causing the fever (along with other symptoms). If that is the case, it can be treated with steroids and corrected.

Unfortunately, we are still waiting for some answers but at least we are looking for them now rather than waiting for them to find us!

With Love,

Greg, Robin, Caitlin, Caroline & Cam

Labor Day Update #3

2009-09-07T13:36:00.002-04:00

And the winner is....Dr Mazzola - neurosurgeon and GENIUS!!

They are taking Cam off of all of the antibiotics and will not be adding steroids at this time. We will wait and see what the fever does once the antibiotics work their way out of her system. If it spikes again we know that there is some type of infection but the markers for the body scan will possibly be clearer.

The scan should happen tomorrow afternoon. She will most likely need to be sedated and intubated for the scan which obviously has some risks. They have already requested a pediatric anesthesiologist be available for tomorrow. It seems that the first MRI (on Friday August 21st) used a "regular" anesthesiologist which resulted in a , shall we say, "violent" reaction.

So despite the holiday, there does seem to be some "troubleshooting" taking place today. We are very relieved that even if it doesn't get rid of the fever, we will start getting some answers soon.

With Love,

Greg, Robin, Caitlin, Caroline & Cam

Labor Day Update #2

2009-09-07T12:35:00.002-04:00

OK...so Cam still has a fever. The oncologist and the infections disease doctors want to add steroids to the existing drug regimen. Then tomorrow they would do an idium scan to see if they could locate the source of infection (if there is one).

The neurosurgeon's inclination is to take Cam off of EVERYTHING for 24 hours and see what happens. If her fever spikes overnight, then the scan would still show the infection and, if anything it would be easier to locate.

Luckily, there are a lot of smart people talking to each other now to try and come up with a solution here. Unfortunately, they are not all in agreement so we have to put them in a steel cage and see who is the last standing.

Regardless of the outcome, we just want her to get better. Hopefully, whatever they decide we will get there - we just need to see movement in that direction!

More to come once the final bell rings with the doctors...

With Love,

Greg, Robin, Caitlin, Caroline & "Typhoid" Campbell

Labor Day Update

2009-09-07T07:29:00.002-04:00

Campbell continues to make tiny steps of improvement but is still in the hospital. Her fever seems to spike several times during the day and late at night and "drug fever" is moving up on the list of possible culprits. This just means that she is having a reaction to all of the antibiotics that she is on and her body is confused as to what to do. She is sleeping a little bit better which is music to our ears since one of us is here with her at night too.

The vomiting also seems to have stopped - though she did get sick this morning from drinking too much juice too quickly (that's what we are going with since we can't accept a step backwards) - which is good news. Her blood work from yesterday showed that her white blood cell count was back to normal as were MOST of the other numbers. There were some inflammatory markers that were still elevated which they are trying to figure out but, again, not much will happen over the holiday weekend. It seems that being sick during a holiday does not give you the best chance at a speedy recovery.

Greg got out yesterday afternoon for a round of golf with a friend from work and Robin is going to escape this afternoon to go watch Caitlin dance at the minor league baseball game. Caitlin spent the day at the hospital with Robin and Campbell yesterday which I think helped her to see that Cam was getting better. Caroline spent the weekend with a friend at the beach and continues to be "Caroline". She is concerned about her sister but is able to put it aside better than the rest of us and actually have some fun. We love that about her and are so glad to have her just the way she is!

School starts this week so we are going to need to get creative in terms of getting to the hospital/school/work in the mornings. Luckily, we have many guardian angels who have offered to help !

Enjoy your holiday! If you are in the area, we hear that MMH is a great place for a holiday picnic! LOL

With Love,

Greg, Robin, Caitlin, Caroline & Cam

Update - 9/5

2009-09-05T17:22:00.002-04:00

Campbell remains in the hospital. She is still running a fever and none of the doctors can seem to figure out why. One of her pediatricians was up this morning to see her and joined the group of very smart people walking around scratching their heads. The Director of Pediatrics at the hospital stopped and he doesnt seem to have any answers either.

The GI doctors don't think it is anything with her liver (which they were interested in originally after viewing the ultrasound) which is good news but gets us no closed to figuring out why her fever keeps spiking.

As you can imagine, it is very frustrating to just not know. However, it also means that there is nothing terrible going on so it is somewhat of a mixed blessing.

They are talking about do some other type of nuclear scan that would mark some of her white blood cells which they would then track to see if it would lead to the source of any infection. But the techs for that aren't in today.

We have discussed many other options with Dr Porter (Cam's PCP) as to what might be causing her fever and our extensive medical opinion is that it is drug fever. Essentially, that means her body is unhappy with the antibiotic. That would be a quick explanation that we think they would have caught already but you never know.

She is starting to get her appetite back. She was interested in dinner last night for the first time all week and was able to eat a little and hold it down. She also had a little bit of lunch and dinner today so we are encouraged that she might be starting to feel a little better.

At this point, now that it is a holiday weekend, it looks like we will be here until Monday at the earliest and more likely Tuesday while they figure this out. She has to be 24 hours fever free in order for them to send her home. If they can keep the vomiting under control they might consider discharging her with only the fever. But it is almost certain that they will just keep her to watch it (rather than have us leave just to come back again later through the ER).

Thank you to EVERYONE for your continued support and prayers.

With Love,

Greg, Robin, Caitlin, Caroline & Cam

Update - 9/3

2009-09-03T17:42:00.003-04:00

Here is the latest on our little friend, Cam:

One of the oncologists (Dr Gregory) was up today and they have the pathology results back. The tumor is being classified as an ependymoma - stage 2, which is cancer. They are still discussing with the Childrens Oncology Group which treatment protocol will be best for Cam. At this point, they think that it will most likely be treated with radiation therapy only (6 - 8 weeks / 5 days a week) but NO chemotherapy. While we understand that she is still a very sick little girl, we can't help but be cautiously optimistic about the fact that she may not be subjected to the pain of chemo.

She is still in the PICU and is still not able to hold any food down. Her fever spiked last night to 103.9 and was up again this afternoon around 103. Today, we have seen the oncology team, her primary care doctor, the intensivists, the infections disease specialist and about a hundred residents as they try and find the cause of her fever. They did an ultra-sound of her belly this afternoon which, luckily, came back negative. They are also going to do an abdominal CT scan to make sure there is not any fluid in her belly that is causing the inflammation. At this point, they are just trying to rule things out.

Her white blood count is still elevated today but not has high as it was yesterday. They will repeat blood work again tomorrow and hopefully the things that they were concerned with today will have lowered even more. The antibiotics that she is on seem to be helping but both the doctors here in the PICU and the infectious disease doctor are looking to find out what is causing the fever and vomiting. At this point, we don't care as long as she is getting better but it seems that they do.

She had breif glimpses of feeling like herself last night and we ALL slept soundly for about 4 hours (from 2 - 6am) which seemed like an eternity to us. She actually ventured outside of the room today for the first time all week, albeit for only 5 minutes, but the fact that she wanted to is a small victory. She saw her girlies and some of her cousins which seemed to perk her up too.

We are hoping that by Saturday at the latest we will be home (I have a tee time on Sunday - golf therapy), but it all depends on how Cam responds over the next 24 hours.

With Love,

Greg, Robin, Caitlin, Caroline and Cam

Update - 9/2

2009-09-02T10:23:00.003-04:00

We had a LONG night last night with Cam. She was up most of the night either uncomfortable due to the incision in her belly or feeling sick to her stomach. She vomited multiple times in the night and again this morning so we were, needless to say, concerned with what the next information to come would be.

First, the "good news" - From a neurological standpoint, Dr Mazzola is very pleased. The shunt placement looks great. She did mention that based on the x-ray that the increased pressure in Cam's head could have been going on for quite some time. What does that mean?... we'll have to wait and see what the pathology says. We are really growing to hate that answer but are encouraged by the possibilities. If it was up to Dr Mazzola, we would be going home today...

The "bad news" is that she is still vomiting and her white blood cell count is elevated. This is an indication of some type of infection. So, they are going to keep her here in the PICU for another night while they give her some IV antibiotics. They will repeat the blood tests in the morning and hopefully see the count return to normal. She is also showing some signs of anemia which may be due to the IV fluids she is receiving but they will repeat that test in the morning as well to make sure it is nothing to be concerned about. This may be the cause of the vomiting but it could also be "normal post surgical nausea."

She is still in some pain in her belly this morning but wanted to get up and go play Wii (until they gave her some more pain medication and she passed out in her bed) or Candyland. It was nice to see her asking to go be a kid again even if her body didn't like the idea.

Meanwhile, Caitlin and Caroline have been living it up with both sets of grandparents. We could not be luckier to have them both so close.

With Love,

Greg, Robin, Catilin, Caroline and Cam

Update - 9/1

2009-09-01T16:32:00.003-04:00

Unfortunately, we had a bit of a setback. Last night, we noticed that Cam's hair was wet around the incision and the collar of her dress seemed to be damp as well. Since we had not given her a bath yet, we figured it could not be a good sign...

A quick call to Dr. Mazzola earned us a trip to the ER at Morristown for another battery of tests. More bloodwork, another CT of her head and a spinal tap and we were back up into the PICU. It seems that the fluid was not draining properly from her head even after having the tumor removed. This is not uncommon at all. This morning, Cam had a permanent shunt put in to help drain the fluid from her brain. It is not at all uncommon and the procedure ONLY took about an hour and a half.

On the bright side, they were able to do the spinal tap that was originally scheduled for the 14th of September during the procedure. This will give the oncology team a look to make sure that there are no cancer cells in her spinal fluid. The results of this test will determine where and what dosage of radiation is required. Unfortunately, we still don't have the final pathology report on the tumor so the exact next course of treatment is still unknown.

Once again, we are amazed at what a strong little girl she is. She is back up in her room now and has had some juice and a snack and seems to be tolerating it well.

We thank everyone for their continued thoughts and prayers.

With Love,

Greg, Robin, Caitlin, Caroline and Cam

Update - 8/29

2009-08-29T21:25:00.002-04:00

Overall, today was a rather uneventful day. Campbell remembered last night that we had promised her to a trip to Toys R Us while she was in the ER last Thursday getting her initial IV. (Who said she is not going to remember anything?) So, off we went to Toys R Us this afternoon. We stopped on the way and got her a new haircut since we had to cut the knot that was in her hair after the surgery out and then took her out to lunch at her favorite place (Panera Bread, of course...odd child...)

She had a visit from her "Aunt Genene & Uncle Mike" this morning and we were all happy to see her acting like herself again.

We are still trying to get used to how quickly she crashes but we are learning just like she is and are starting to get it.

We had a bit of a scare this evening with another episode of her vomiting. It is very scary for all of us to not know exactly who or when to call when she is sick. We gave in and called the pediatrician who returned the page about 2 minutes after we called. His wife is also one of the Pediatric Oncologists that will be treating Cam. Needless to say, we could not be happier with the care that Dr Porter and Dr Fritz have provided Campbell. They truly care about her and we would not trade them for the world (If you are looking for a recommendation for a local pediatrician, Basking Ridge Pediatrics is my vote). Luckily, it does not look like anything to be concerned with at this time. Again, we will continue to watch it and hope that it stays a non-event.

Our outing tomorrow morning will be to church. More than ever, we are feeling truly grateful- for our family and friends , for Cam's health, and for the doctors who have brought us this far.

Please continue to pray for Campbell - that the news next week come back positive and that she has a speedy and complete recovery.

UPDATE - 8/28

2009-08-28T09:47:00.002-04:00

Yesterday and today started with Campbell not feeling very well. Luckily, it seems to pass by late morning/early afternoon and she is back to being herself again. We will continue to watch it and hope that it does not become a problem

Campbell continues to make improvement every day. Last night, she had a great time playing with Nanny & Pop-Pop and this morning she was up VERY early painting a picture (I'm glad that Mommy stayed over night with her last night)

The REALLY GOOD NEWS is that we brought Cam home today! We are all so pleased to be out of the hospital and we are looking forward to the next steps in her recovery.

We should get the final pathology reports by the middle of next week and we are trying to remain hopeful that we receive positive news.

The girls will be home on Sunday and Cam is looking forward to having her "girlies" home.

Thank you again for your continued thoughts and prayers!

Greg, Robin, Caitlin, Caroline & Campbell

Cam has been sprung from the PICU!

2009-08-26T20:56:00.002-04:00

They moved Campbell from the PICU to the regular Pediatric Unit this afternoon! We are anxiously excited and a little nervous about her brain regulating the pressure on its own. However, we are confident in the amazing team of doctors taking care of our baby. It does help a little that in the four days post-op, she did not need to have the shunt drained at all - her brain took care of itself just fine!

The girls are having a great time in SC. Although they miss their sister and have been worried about her, they have been ecstatic to see pictures of her progress emailed to Mama's phone. She even got up and played Wii for a bit tonight!

Still no official diagnosis on the type or stage of cancer. We wait, holding our breath and praying for the best, until probably next Tuesday.

The outpouring of love and support from all of you has been overwhelming. Thank you so much for your concern, prayers and love. We are blessed to have all of your in our life. We love all of you!

Robin and Greg

UPDATE - 8/26/09 - 9:30am

2009-08-26T09:37:00.002-04:00

Campbell had another good night last night. She was up at 1:30am looking for more "pumpkin muffy" and some juice - which was happily provided! She is sitting up and eating this morning and watching some of her shows and beginning to act more like herself. Around 9:00am the Neurosurgeon came in and removed the drain from her head which, although not the most pleasant experience, was greatly appreciated by Cam! She'll be getting a bath today and hopefully get her hair brushed which will make her mother happy!

Her appetite seems to be coming back and she was having some french toast (w/ketchup, of course - yuck!) and bacon so we are hoping that she starts to put on some of the weight that she lost over the past week.

They plan on getting her up and about today to play some games, take a walk and start to get her motor skills going again. We will most likely be transferred out of the PICU either today or tomorrow and possibly will be home on Friday (or else it will be Monday).

Yesterday, we met both the radiation oncologist and another one of the pediatric oncology team. They still don't have all of the results back from the pathologist at Johns Hopkins so we won't be sure what the extent of the chemotherapy and radiation will be.

We are trying to remain cautiously optimistic based on all of the positive results thus far without getting overly optimistic. She remains a very sick little girl but we will take her however we can!

Caitlin and Caroline are enjoying their time in South Carolina and seem to have been able to temporarily be themselves again. They call to check on their sister multiple times a day and are really looking forward to getting home to see her.

On a personal note, Robin and I are so touched by your continued love, support and prayers. It is comforting and humbling to feel the outpouring of support in so many ways from so many people. Needless to say, we can never thank you all enough for what you have done. Our family could not have gotten through all of this without you and we will never forget your overwhelming acts of kindness. We are truly blessed to have you all in our lives.

Please continue to pray for "Miss Cam"!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell Grace

UPDATE - 8/25/09 - 11:00 PM

2009-08-25T23:13:00.001-04:00

Dear all, Campbell Hoyt is doing remarkably well and we are hoping that she is released from the hospital soon. Please feel free to sign up (see website address and login information below) to bring dinners (and help in other ways as needs arise) to the Hoyt Family while they focus on helping Campbell recuperate! Details are on the website, but please bring all dinners in a disposable container with clear cooking instructions. There will be a cooler on their back porch at 21 Old Army Road between 4-6pm where you can leave the food. I know that the family truly appreciate all the warm thoughts and prayers AND help that you provide as we move forward with Cam's recovery. Any questions or concerns, please give me a call at 908-672-5938 or email at the above address. You will receive a confirming email that will remind you of the date that you have signed up for. We will be adding dates and tasks as needed.

To access Hoyt Family's personal CareCalendar site, visit http://www.facebook.com/l/;carecalendar.org/logon/21390 and enter the following information in the appropriate spaces:
CALENDAR ID : 21390
SECURITY CODE : 5261

Once you log on, you will be asked to fill in some information. Please make sure that all the information is complete (including how you know the Hoyts) so that the you will have access to the calendar. Thank you so much!

Becky Hull

UPDATE - 8/23/09 - 11:00 AM

2009-08-24T11:02:00.000-04:00

Campbell was able to have her breathing tubes as well as various other support tubes removed this morning and was awake, talking, and expressing her STRONG desire to "Go Home." She continues to improve with each passing hour thanks in no small part to all of your prayers and support. Her godfather, Brian (aka Twinky) arrived last night from New Mexico and is spending time with her and Greg, and Robin.

Latest Update

2009-08-23T20:09:00.000-04:00

I spoke with Mark and he asked that I update everyone on the latest information. Cam had an MRI today and the doctors were again ecstatic with the results. Not only did the MRI confirm that they were able to remove the entire tumor but there is still nothing showing that is concerning the doctors. The girls were able to ask questions, cry, and eventually feel good about the fact that they know what is going on and that their little sister is in good hands at the hospital. The girls left to go to Charleston with Robin's parents for the week. Later in the day the doctors were trying to pump any excess fluid out of Cam's lungs but were unsuccessful because they found out the tube was bent somehow. So they took that tube out to put in another tube and were then able to pump the little bit of fluid. An attempt was also made to bring her out of sedation but Cam's breathing was shallow so the doctors will try again tomorrow. There wasn't any concern about having her under for one more day as they mentioned everyone responds differently. Her fever is also down to 99 from 102 so that also continues to improve.

On the homefront for the Hoyt's a member of their family heard of an organization called HeartWorks has stepped up and they are going to pay the fees Greg and Robin would have had to pay in order for the girls to take the bus to school. They are also offering to help with cleaning services and other avenues for help so the transition back home for Greg, Robin, and the girls is as smooth as it possibly can be. This organization was formed by a lady after 9-11 who wanted to start a non-profit to help families with the things they are now offering to Greg and Robin. God Bless them!

Greg and Robin have been able to take some time to read your posts and they are overwhelmed with gratitude and appreciation for all of the love and support for their family. They again would like to thank you for all of your love and support. They have felt everyone's love for them and it has really helped them through this tough time. Continue to pray for them and for Cam that she will continue to grow strong and continue to get better.

Chris West