Paris Update - 4/11/09
This trip has been by far the most complicated, just because I think I have changed my flight at least 100 times by now-Jet Blue is getting tired of my calls! I thought that being on the 8H9 antibody would be very easy and my stay in New York would only be 2 weeks to receive the last 2 doses of antibody treatment, however again things have changed. When we checked her platelets they were extremely low. When we began treatment they were 200 and have dropped to 15. Platelets determine if we are continuing antibody treatment 8H9 because it is linked with radiation and since they are below 50 we can not continue. We will save the last 2 doses for the future (hopefully we will never need them).
Heres a funny story that I forgot to share last time, when we got 8H9 she was radioactive. She actually set off the alarm system at the Walgreens and CVS. I was wondering why every time I walked in and out of the store the alarm would go off. I was talking to a friend of mine today and made the connection!
The results of the brain MRI were stable compared to February, no evidence of disease and the area resembled post therapeutic change from surgery and radiation. No news was good news.
The results of the spine MRI compared to February showed the areas of enhancement between T10 and T 11 are no longer present. There is still the spot on T9 which has remained stable in size (1.0 x 0.6 cm) it is hard to determine if the spot is disease or post therapeutic change. Since its stable Im hoping and praying no disease, but the location is so close to the possibility of it entering the spinal fluid as time goes on the plan is to begin antibody IV 3F8 as soon as possible to prevent that.
This is the story of how Paris had a terrible, horrible, no good, very bad day.
That being said there is a lot of “work up” and necessary steps that need to be taken before the start of IV 3F8. Paris began that on Thursday April 9 and was NPO, sop we already have started the day off on a great foot. We went to clinic and had blood draws, she needed to have an NG tube placed for contrast for the CT scan. She threw up the first dose of contrast and she had to be re-dosed, then they had to take a 4 hour urine sample where a catheter was placed-so the day is really bad now. The saddest part of the day is when she was screaming “help me, help me”… and mama no..no..no.. Of course she held her urine, plus she was NPO for the full 6 hours and we only got a little sample! She needed an Echo scan which indicated that there was fluid around her heart (which is a bit scary because heart damage is a possibility if one has had a lot of chemotherapy), those results led to us having an EKG scan to track her heart beats. After that she was sedated for Bone Marrow testing on 4 sites which is extremely painful. Since her platelets were so low she bled all over and wouldn’t stop so my tan shirt became red and she needed a platelet transfusion, needless to say I was freaking out! After all that we needed to do another blood draw to ensure that the platelets took and discovered that we needed a blood transfusion because she lost so much blood!
There is one more important test that needs to be complete-the MIBG injection and scan, which consists of two days. We are waiting for an opening to do that scan which will give us more information about any other possible disease-that hopefully is not present.
So I basically am in New York until all of the work up is complete and everything is processed to begin IV3F8. When we do start IV3F8 it will only be every month for 5 days, so the schedule should be much more organized.
Again all of this is contingent on her health, counts and scans. Everything can always change in a heartbeat…
Paris is really doing well she is really starting to try walk and she is talking a lot. Her hair is beginning to come back and it is light blonde. Third times a charm.
Thanks again for always thinking about her.
The prayers are greatly appreciated-Lauren and Paris