Wednesday, September 30, 2009

Update - 9/30

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.

Tuesday, September 29, 2009

Update - 9/29

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

Monday, September 28, 2009

Update - 9/28

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

Sunday, September 27, 2009

Update - 9/27

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

Saturday, September 26, 2009

Update - 9/26

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

Thursday, September 24, 2009

Update - 9/24

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

Wednesday, September 23, 2009

Update - 9/23

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 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

Tuesday, September 22, 2009

Update - 9/22

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

Monday, September 21, 2009

Update - 9/21

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, 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

Saturday, September 19, 2009

Update - 9/19

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

Friday, September 18, 2009

9/17 - Update #3

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

Thursday, September 17, 2009

9/17 - Update #2

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

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" ( 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

Wednesday, September 16, 2009

Update - 9/16

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

Tuesday, September 15, 2009

Update - 9/15 - 5:00pm

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

Monday, September 14, 2009

Update - 9/14

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

Sunday, September 13, 2009

Update - 9/13

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

Saturday, September 12, 2009

Update - 9/12

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

Friday, September 11, 2009

Update - 9/11 - 9:00am

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

Thursday, September 10, 2009

Update - 9/10 6:30pm

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....

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

Wednesday, September 9, 2009

Update - 9/9

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

Tuesday, September 8, 2009

Update - 9/8

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

Monday, September 7, 2009

Labor Day Update #3

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 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

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

Saturday, September 5, 2009

Update - 9/5

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

Thursday, September 3, 2009

Update - 9/3

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

Wednesday, September 2, 2009

Update - 9/2

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

Tuesday, September 1, 2009

Update - 9/1

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