In our case, the unexpected is that our little Hazelnut's scan results were not the usual NED (No Evidence of Disease) that we have enjoyed these last months. As you may remember, she received two different sets of scans; and MRI and an MIBG (a scan that specifically lights up when Neuroblastoma cells are forming in your body. Her MRI was Monday and her MIBG was Friday. On Thursday, we were informed by the doctor that the MRI detected a new growth in and around Hazel's previous tumor and surgical site. What that new growth is, they were not sure, but there was significant reason to be very concerned. This made her MIBG results all the more meaningful. If it was to light up, then it would be certain that our little Hazelnut would be relapsing; and if not, then she would have to receive more testing to continue to rule it out and to figure out what we would be dealing with.
On Friday, we actually met with the doctor to go over results, directly following the scan, instead of waiting until Monday. These results we actually INCONCLUSIVE. Typically with Neuroblastoma, and also when Hazel was in treatment, there is no mistake when active Neuroblastoma cells light up. With this most recent scan, the area in question did not most certainly light up, but the radiologist did detect something. This something would be an incredibly small light indicating disease, OR it could just be the normal light that shows up when there is uptake of the radioactive material that is being filtered through her liver, kidneys and colon, all of which are close to this new growth.
Since these results did not give us any new information, further testing is needed. Hazel will receive a third, and different scan, called a PET/CT, that will hopefully give us some more clarity. This will be done this Friday, August 19, in the morning. Then she will also have a biopsy performed the following Monday, August 22nd. When she was first diagnosed, her biopsy had to be performed with a surgery, leaving her with a lifelong scar. This biopsy, however can possibly be done in an outpatient procedure, using a small needle. It is appearing more and more likely, that the surgery will not have to be done, which, of course, would be the most ideal. But we also want to make sure that we are getting the best and and most clear results as possible, so this decision is not being made lightly. We should know which procedure will be done by the end of the week. Lastly, while getting the biopsy of this new growth, she will also have a bone marrow biopsy performed. Neuroblastoma likes to hide in and infect the marrow, so this test is always standard when looking for Neuroblastoma. If all of these result in a positive diagnosis, Hazel would begin a treatment protocol immediately. This would most definitely include chemotherapy, and would possibly include radiation, immunotherapy, and other medications currently administered on a clinical trial basis.
Understandably, our family has been reeling from and overwhelmed by this news. We had so much hope, that cancer would not touch our daughter again, but as in the case of many children, here we are, fearing the worst. This is why we have continued to fight so hard for childhood cancer long after Hazel's treatment was finished. We know that relapse was a a possibility for our daughter and is a reality for so many families. Research money is just not enough. Awareness is just not enough. And the priority that our fighting children are is certainly not high enough! Our upcoming fundraiser for childhood cancer awareness month, The Ever After Ball, benefiting the St. Baldrick's Foundation, has now become all the more important. For more information about tickets and sponsorships go to www.stbaldricks.org/everafterball These results have most certainly reminded us that research funding is so important in the lives of these children, and we will continue our fight even more determined than before.
We have decided to not inform Hazel, and our other children about these results. They are all to start school this Wednesday, and Hazel has been extremely excited all summer about her very first day of Kindergarten, so we do not want to worry the kids until we have to. In that vein, we also decided to take the past two days to stay at a hotel near Disneyland and spend sometime with some magic as a family. So while we asking all of you to stand with us in prayer, good thoughts, and support; we also ask that if you see our children, to not mention what you know.
Additionally, we do have some good news to report, that works in Hazel's favor no matter the outcome of these upcoming tests:
- Hazel has been feeling tremendously well and is, honestly, stronger than she has ever been. This is a good indicator about the level of possible disease in her body, and also will support her if she has to begin treatment.
- Her blood counts are all NORMAL!
- Typically, a first indicator of disease in Neuroblastoma patients, are elevated catecholamines found in urine; and Hazel's are all within normal range!!
- Her first tumor was sent for genetic testing, and it actually had something called and ALK Mutation. Currently, there is targeted therapy for relapsed patients that have NB and it is proving to be pretty successful!
- And lastly, just as we saw during her first arduous treatment protocol, our God and Healer has our daughter in the palm of His hand. He tells us in JOHN 16:33- "I have told you these things, so that in Me you may have peace. In this world, you will have trouble. But take heart! I have overcome the world!"
We will of course continue to update you all as we receive results, but in the meantime, please pray for these results! Pray for our family as we navigate these next couple of weeks with testing and school starting. Pray for our children's hearts to be protected with peace and understanding and to be prepared if the news is not what we desire. Also, please be praying for our children, because while driving down to Disneyland, they all showed signs of a possible cold; and while sleeping at the hotel last night, they have all developed into colds. They all, but Hazel especially, deserve to have their first day of school, and I would be heartbroken if they would have to miss it, all things considered. Thank you all for your continued support, and please know that it has always meant the world to our family.