March 30, 2014

Before we get into the happenings from the past week I would like to direct your attention to the Upcoming Events link on  We have been working extremely hard the past month organizing the first annual EmmaStrong "Drive For a Cure."  We have a brochure available for those that prefer registering through the mail, as well as an option to register on-line that includes a five dollar convenience fee (thanks to PayPal).  This will be an afternoon and evening filled with laughter and entertainment provided by family and friends.  For this day to be successful, we will need each and everyone of you out there to either register a team of golfers or find a business that would kindly enough consider being a sponsor for our event.  100% of the proceeds from this event as well as the "Emma’s fun 5k Run/Walk" will be used towards the research and development for research for the treatment and cure for Pediatric Brain Tumors.  Please consider taking part in one or both of these events.  Thank you in advance for registering for these fun filled activities, we look forward to filling Tiburon with friends and family "Driving for a Cure."

I wish I could say that chemo went smoothly this week, but unfortunately this week did not go as planned. We were so relieved when the last urine sample we had done came back saying the protein had dropped back down. The doctor felt that it should stay down because Emma hadn’t had the Avastin and that we should be good to go this week for chemo. Emma’s blood counts looked as good as they have since we started chemo (of course she hasn’t had the Avastin for a month now). Unfortunately that was where the good counts ended. Emma’s urine sample came back saying that the protein in her urine was back up to over 300 and there was still a trace of blood in it. The doctor ordered another urine sample to get a more in depth analysis, but there was no way she could have chemo Tuesday with her protein counts that high.

We were obviously very concerned and the doctors couldn’t figure out why the count had dropped last week and come back up again this week. After much discussion, Dr. A. decided to admit Emma to the hospital for a 12 hour urine analysis. This test would give us more accurate and more definitive answers as to exactly what the protein count is. Evidently protein in your urine can vary throughout the day, so the longer sample would give more accurate results. So Emma was admitted to Chidlren’s on Tuesday afternoon. We did get to see many of our favorite nurses on 6th floor, but would have been happy to have just been able to visit not stay. Dr. A. didn’t really want to have to put a catheter in because of the risk of infection, but decided this was the route we had to go. She did tell us that we may need to start preparing ourselves for the possibility that Emma may need to switch Chemo regimes again. This is definitely not the news we were hoping for. So they got the catheter inserted Tuesday night, which Emma was not a fan of. We finally got the results back Wednesday afternoon, and they were not what we had hoped for. The protein level in her urine was at 380, which is very high.

Dr. A. would really like to keep Emma on this chemo regimen because she is tolerating it so well and our scans have been stable the last two MRIs. However, to do that we need to figure something out to help with the protein in her urine. Dr. A. had a wonderful nephrologist (kidney doctor) come down and look at the results as well. She said that Emma cannot have the Avastin until the protein level drops because it is too dangerous for her kidneys. She did say however, that if we can get the protein level to drop she is ok with starting the Avastin again. After much discussion with the doctors in Omaha and a call from Dr. Chi in Boston, both doctors recommend trying to put Emma on high blood pressure medicine once the protein count drops. Evidently the blood pressure medicine naturally protects the kidneys and could allow us to use the Avastin longer. We can’t start those meds until the protein number drops though. Using the high blood pressure meds means we would have to watch Emma very closely and have her blood pressure checked every week because currently her blood pressure is fine and the meds could cause it to drop too low.

We also would have to do overnight urine samples at home before chemo to get a more accurate level for her protein each week. This will involve us having to wait to put her to bed until Emma has a wet diaper and then placing a urine bag on her for the evening.  We will then have to collect the specimen in the morning and drop it off at Childrens before work.  The reason this needs to be done is the protein levels in urine are usually higher during the day when you are active.  The overnight level will more accurately reflect how the kidneys are doing.  I’m glad that both Omaha and Boston agree that this is the best plan right now. Dr. Chi in Boston felt that being off of her Avastin for 6 weeks wouldn’t be detrimental to Emma’s overall progress on this chemo regimen; which is a bit of a relief because we have been very worried about what the tumor has been doing since she has been without treatment for over a month now. So the plan now is to do a urine sample Monday night and take it in Tuesday morning to see where her levels are. If they have dropped back down to 100 we can start the blood pressure meds and possibly do chemo that day. So it is all a waiting game now.

It was an incredibly emotional and long week for us. I have been worried sick over Emma not being able to get the chemo she needs and is doing so well on, and at the possibility of having to switch regimens again. The next choices that we talked about this summer when we switched have some side effects I would rather avoid. We knew this was all a possibility because it is a known side effect of the Avastin, but we were hoping we would have to deal with it until later into the treatment. It breaks my heart to think we may have to start over again, especially when the treatment is working and Emma is tolerating it so well. We just keep praying that these next steps will help and buy us some more time on this treatment. We go back to Boston in 2 weeks for scans so it will be good to see how things are going at that point and be able to meet with the team there in person. Emma also has a follow-up appointment tomorrow with the neuro-opthamologist to see how he thinks her eyes are doing. We will find out tomorrow if he thinks she needs the botox injections.

I want to say a special thank you to the Carriage Hill Learning Center for the awesome luncheon they put on for Emma this week and a very special thank you to the staff at Carriage Hill for their support this week. It was awesome to see you all in your Emma shirts Thursday and it certainly helped to lift our spirits this week.

We could use a few extra prayers again this week for little Emma that her protein levels drop back down and that this new plan will work and allow us to start chemo again. Thanks again for all your support!! Emma Strong!!!!