Sunday, December 19, 2010

Update - 12/19

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

Thursday, December 2, 2010

Update - 12/2

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

Monday, September 13, 2010

Update - 9/13


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

Sunday, September 5, 2010

Labor Day Weekend Update

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 ( 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

Monday, August 16, 2010

Update - 8/16

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:


With Love,

Greg, Robin, Caitlin, Caroline & "Cam"

Friday, July 23, 2010

Update - 7/23

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

Wednesday, July 21, 2010

Update - 7/21

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

Thursday, June 17, 2010

Update - 6/16 - ALL CLEAR

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

Friday, May 21, 2010

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

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.

Friday, May 14, 2010

Update - 5/14

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

Monday, May 10, 2010

5/9/10 - Happy Birthday Campbell!

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

Wednesday, April 28, 2010

Update - 4/28

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

Saturday, April 17, 2010

Update - 4/17

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

Monday, April 5, 2010

Update - 4/5

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

Tuesday, March 30, 2010

Update - 3/30

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

Saturday, March 27, 2010

Update - 3/27

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

Thursday, March 25, 2010

Update - 3/25

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

Wednesday, March 24, 2010

Update - 3/24

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

Tuesday, March 23, 2010

Update - 3/23

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

Monday, March 22, 2010

Update - 3/22

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

Sunday, March 21, 2010

Update - 3/21

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 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

Wednesday, March 17, 2010

Update - 3/17

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

Wednesday, February 10, 2010

Update - 2/10

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

Saturday, January 23, 2010

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

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

Thursday, January 21, 2010

Round 2 - Day 2

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

Wednesday, January 20, 2010

Childrens Hospital Boston - Round 2 - Day 1

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

Thursday, January 14, 2010

Update - 1/14

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