Still Waiting

I am officially annoyed. Was geared up for a call from MSKCC today about Jacksons scans and their advice. I called and they won't be able to look at the test results until tomorrow. So, here's for another nerwracking, nailbiting 24 hours!


jb

Scan Results

Joe here.

We finally talked to the Doctor about Jackson's scans on Friday afternoon.  We had an appointment to get the results on Friday morning, but they didn't have them ready, so we left and they would call us when it came in.  This seemed very strange to me, since, normally when the Radiologist report isn't in yet, the Dr. calls down and has them look at it and takes notes over the phone, and passed the info on to us.  This did not happen.

We wait and wait and many hours later, I call, and am told the computers are going slow, the appointment nurse will look up the records and call us back in a few minutes.  About 20 minutes later, the Oncologist calls me directly and tells me that the MIBG was fine, but that one of the MRIs shows something in the same area of Jackson's original tumor that was not on the last scan.  

She wants to wait 3 months and rescan, instead of the 6 months that we would have waited, had there been no news.  I said okay over the phone, but did not really have a chance to think of any questions, as I was in a bit of a state of shock. 

We thought about it for a bit, and I called Radiology and they got me the CDs with the info including the new scans, and all older scans, and I went to pick them up Friday around 4pm.  I overnighted them to MSKCC (Memorial Sloan Kettering Cancer) Center) in NYC, and after talking to Sarah in Dr. L's office, was assured that they would review the scans on Tuesday (April 20) and let us know their opinion.  

The thought of waiting 3 months is very scary.  We are very nervous to hear what they think.  The onc here is not even sure the area is large enough to biopsy, but I am a little reassured that the MIBG didn't show any hot spots.  Unfortunately, they are not always 100% accurate, as some kids are MIBG avid and then later on are not MIBG avid.  

Also, we are waiting to hear the HMA/VMA numbers which could indicate NB activity if the numbers are raised.  We should know tomorrow or Tuesday I hope.

Needless to say, we are very concerned, and scared and are looking for answers.  We are considering what to do about building the new house we have been planning for so long.  If this is a relapse, I don't think we will be devoting so many resources (time, energy, and money) into the project right now.  Time will tell.

-Joe 

Spring has Sprung

It has been beautiful outside latley and we have been taking advantage of it. We have been playing out in our backyard alot, going to parks, playing outside at the Children's Museum and anything else we can come up with to keep busy.
Joe had the day off, so we took the boys to ride on the Forest Park Miniture Railroad. The ride is a little over 30 minutes and takes you through Trinity Park. Once we were done with the ride, the boys were ready for lunch (they are ALWAYS ready to eat). We went to a nearby park and had a picnic and played for a while. I guess we played pretty hard because when we got home we all had a nap, which is rare for the boys to do these days.

Austin started swim lessons last week and is loving it! The first lesson was not so great, he was crying and wanted me to sit next to the pool. Luckily, I found out that promising him a piece of gum after each succesful practice was all the motivation he needed to become the perfect swim student.

This fall I will officially become a full time working mommy, I will be working up at Children's University as the school nurse! Perfect job for me since I really need to be up there with Austin all of the time to take care of his diabetes stuff. Austin and Jackson will both start going 5 days a week, I am not sure how they will react to the new schedule but I guess we have plenty of time to prepare them for it.

I take Jackson to the hospital tomorrow for his MIBG injection. Thursday morning we go in for scans which is always an all day thing. We will probably get to the hospital around 8am and we usually don't leave until 5 or 6pm. Friday we go talk to the oncologist about the results of the scans and I will post here after we get the good news :)

I hope everyone is having a wonderful week...here are some recent pics....

Sweet boy

Playing in our backyard

Austin at swim lessons

Austin and Alexis having fun

Riding on the train

Our Saturday....

We woke up bright and early this morning and headed out to Fort Worth for the Neuroblastoma Walk. So far, $45,000.00 was raised and they still have donations coming in! The boys had a blast running around and playing, there were so many wonderful people there and the weather was perfect.

Afterwards, we came home to relax and try to get naps.....which is a joke around our house. The boys have not taken naps in so long, the only thing that keeps me going through the day is Diet Coke, I miss nap time!

After our non-nap time, we went up to Lake Arlington Baptist Church for their egg hunt and carnival. They had the easter bunny drop the eggs from a helicopter. We got there right as the helicopter was about to land, but by the time we made it to the field, all of the eggs were taken. Luckily, there were a few people handing out eggs to the little kids, so the boys each got about 6 eggs and they were happy.

We are now at home resting....I am looking forward to 7pm when I will be leaving the house for some mommy time :)

Hope everyone has a wonderful, happy, fun Easter!

Here are some pics from todays events.....

With Mammaw and Pappaw at the NB walk

Jackson was so excited to see himself on his poster

Everyone walking

Me and the boys after the egg hunt