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 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

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