CALLING ALL PRAYER WARRIORS!

Monday 9/7 Transplant Day +17: Happy Labor Day and Happy Birthday to Uncle Johnny. Brooke was very excited to decorate our room to surprise Uncle Johnny this morning. She has pretty much missed all of her friend’s and family’s birthdays this year (which has been tough because she loves a party) so it was nice for her to be able to celebrate something.

Tuesday 9/8 Transplant Day +18: Brooke had a very restless night sleep. Had OT with Erin this morning but did not cooperate much. She complained of stomach pain pretty much all day. Hasn’t had much energy. Not eating anything but drank her minimum fluid goal for the day of 6oz. This is her third straight day of not needing a platelet transfusion which is a good sign. I hope and pray that she starts feeling better soon. She has her heart set on going home Thursday but I’m really starting wonder if she is ready. Its scary enough taking her home but so much more stressful when she is not feeling herself.

Wednesday 9/10 Transplant Day +19: Brooke was still complaining of stomach pain all morning (they think that it is from not eating for so long). Had PT this morning but was not cooperating at all (may get PT at home). She seemed to be feeling better by the afternoon (her mood was much better anyway). She ate some ice cream & a small amount of yogurt today but was a little shy of her fluid goal.

Tomorrow is a big day for all of us. Aside from the obvious of getting to go home, Brooke will be having an MIBG Scan in the morning. This scan detects the presence of Neuroblastoma in the body. As I sat and watched the monitor for her 1st MIBG scan back in January I remember the horror as I saw her entire skeleton light up like a Christmas tree indicating that the cancer had invaded every bone in her body. It was completely devastating. How could my baby’s body have this much cancer in it and how could we not know…mind numbing. Her next MIBG was after the 2nd round of chemo to see if she was responding to treatment. Watching that scan was just as terrifying as once again her whole skeleton lit up (but our doctor comforted us by pointing out that yes it was still everywhere, but not as intense as it was originally). Her last MIBG was after round 5 (in May) and as I watched and saw that there were still areas lighting up, my fear started coming back until I talked to our doc afterwards and he told me that there are areas that will light up that have nothing to do with NB. It turned out that all the areas I was concerned about wound up being the things that always light up, however there were still 3 areas of concern. NB showed up, very minimally but none the less still there, in her skull and the tops of each femur. The doctors were very pleased with the results but as parents we were very concerned (we had hoped and prayed that she would be going into her transplants with no evidence of disease like so many of the other kids that we have met here) but at least she would still be getting her 6th round of chemo plus the 2 high dose rounds during transplant so we have tried to stay optimistic. It is essential that this scan comes back clear of neuroblastoma (at least in our minds). Yes, she still has radiation to go though but I am scared that if after all this chemo it still remains we might never here the words No Evidence of Disease.

Please, I beg of everyone reading this, to please pray like you have never prayed before that these scans come back totally clean (no question about it). She will still need to get another bone marrow biopsy (which also showed prior to transplant that there looked to be some NB activity in the marrow). She will be going down for her scan at 9:00am(Thurs morning) and it should take about 45 minutes. We need every prayer warrior out there on this one!

Thank you so much and blessings to all,

Amy