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


  1. Still keeping up with the updates and praying for Cam and the rest of the family. Love you guys!!!

  2. Thank you so much for the update and the pic. She is absolutely precious! I think getting the second opinion is very wise and hope the Boston Doc will agree with what your current docs are proposing. I think about you all every day and am wishing little Cam no more POKES!! I hate them too! much love h

  3. I don't know if this will help your situation, but I am going to throw the idea out there. For the anemia, our doctor suggested buying the whole grain cheerios (the ones in the white box, not the normal ones in the yellow box), because one cup of that cereal has a full day's supply of iron. Frances loves them because they have a sweet glaze of some sort. Those might be easier on your little girl than iron pills. Your family is in our prayers. Dale Wood, Grand Rapids, MI

  4. What a gorgeous photo! She looks like an amazing little girl. I am thinking of your family and praying for Cam's quick and thorough recovery.