Saturday, January 24, 2015
So I received the phone call from Hazel's medical team late yesterday afternoon, and here is what I know so far: First, the surgeon was actually out of town and can't look at her scan until we see him in clinic. So we are not are what his thoughts are yet, but I made an appointment for Wednesday, so we Wil get some answers then. Second, the rest of the team was all in agreement with her main oncogist, that since this spot has remained completely stable for nine months and all of her labs came back normal, that we should NOT start any treatment right away and that we may be safe just monitoring it with follow up scans. They all hope the surgeon can biopsy/remove this tissue so we can have some concrete answers, but if it will be too risky, we will wait until her next scans with this new machine (which are set for 10 weeks from now instead of 3 months) to see if there has been any change. If there has been, then we can discuss possible treatment, but if not, we will continue monitoring it. So even though we still have more information we are waiting on, I still consider this another small victory! They could have just as easily said we needed to start treatment right away, so thank goodness that was not the consensus!
Tuesday, January 20, 2015
Friday, January 16, 2015
Allow me to begin by saying thank you to each and every one of you for all of your kind messages and inquiries about our little Hazelnut. It has, and never will go unnoticed by our humble little family and I wish to tell you that your support and prayers continue to be palpable and extremely meaningful to us. As for Hazel, she has been feeling very well! She is growing like a weed, putting on weight and we see new hair every day. Her holidays were spent with family and were wonderfully normal.
As for her baby sister Zoey, we still do not have any conclusive information regarding her spinal concerns. The most recent appointments have given us this: we have ruled out many issues, but the MRI done on her spine still shows excess fluid that should not be there. Based on her meeting all of her milestones, and not being symptomatic, the neurosurgeon believes she is more than likely perfectly fine. However, this excess fluid is still something awry, so he wants to continue to run more and more tests to rule things out. She had an MRI of her brain done yesterday, and will not be able to see the doctor to discuss the results until February 2nd (unless something emergent appears). We also have an appointment to see a urologist in February, so please pray for more clarity!
As for me, it has been a peculiar couple of months. Certainly I have been savoring every single moment with my daughter and my family, but I have been struggling with a lot of stress, anxiety and emotions that I did not anticipate facing after treatment. I'm sure my hormones from having a baby/nursing have not helped either ;) I would like to share with you all what I have been going through for several reasons. One, is I have realized that coping alone is not the answer and the prayers and support from all of you will continue to be crucial. Another is that I believe whole heartedly that God has given me such a unique opportunity with this blog to reach out to others and if what I am facing is in any way similar to what another may be facing as well, then I know I can be of help to them. Lastly, the world of Childhood Cancer is so hidden from the world, and even the stories that are heard or seen are not always filled with the nitty gritty. My hope is that the ENTIRE journey may be shared, explored, talked about and in turn more families can be helped. So here it goes:
This is one of the biggest challenges we have been going through as an entire family, and it has been happening on many levels. First, we have had to adjust to normal life outside of the hospital. With time this has gotten easier, but every little pain, ache or fever sets our worries on fire, and not having an army of health care professionals at our side has proved unsettling. While adjusting to normal life, God blessed us with our beautiful daughter Zoey, and caring for five children, ages 8 and under has brought another set of challenges that we deal with daily. But the biggest change by far has been in the food we consume and products we use. During treatment, I made as many changes toward a healthier lifestyle as I could, but time was in no way on my side. We were in survival and fight mode. Once treatment was done, it seemed strange that we were no longer doing anything to fight this beast and keep it from returning and it was so out of our control. But Aaron and I knew that a change in diet was something we COULD control and felt that we finally had the opportunity to make the changes we so desperately wanted to. After hours of research and through the support of organizations like The MaxLove Project and KICKcanCER we made the decision to adapt a modified ketogenic/paleo diet, not only for Hazel but for our entire family. It was extremely overwhelming to begin with, and many tears were shed. However, we are slowly adjusting and it is getting easier every day, with many successes and failures along the way.
During these last few months, I have also realized that Hazel and I both have been grappling with the effects of post traumatic stress. For Hazel, thankfully, it has only manifested in small ways. The most obvious of which is a heightened emotional state. The most minuscule of things can make her cry as if it is the most terrible thing in the world and she can react irrationally to things that she normally would take in her stride. Also, we have seen her laughing about something, but due to her fragile state, it can quickly turn to nervous laughter accompanied by tears. For me, it has manifested differently. During the holidays especially, I found that certain sounds, smells, tastes, and sights sent me back to the holiday season of 2013 where my baby girl looked like this:
With these flashbacks, would come panic, anxiousness and many time uncontrollable tears. I sometimes find it hard to get out of bed for fear of dealing with these memories. I also would have days where I would be overcome with worry about Hazel's cancer returning. All of these emotions made it very difficult for me to stay in the loop of the goings-on in the childhood cancer world. To help myself, I implemented many techniques to cope with these feelings, with the biggest one being removing myself from the world for a while (hence my absence from Facebook and the blog). By choice, my Facebook news feed is filled with the many other families who are fighting the same fight we have, which was absolutely crucial in the midst of treatment. But over the last few months, there were days it was almost unbearable to face. I would NEVER go back to life without supporting these families and this cause, but I definitely needed a break.
While I pulled away though, it brought on another emotion I had not anticipated: guilt. I felt guilty for not wanting to be in the community. I felt guilty for having a healthy child while we lost so many friends (and continue to). I felt guilty on the days where I was only human and would get frustrated with normal things (spilled milk, anyone?!) and even with Hazel, who is not only a cancer survivor, but a normal (almost) 4 year old. I mean, WHO WAS I to get frustrated when God spared my daughter?! WHO WAS I to get frustrated when we successfully finished treatment and continued on with normal life?! It is not fair that so many perish and it makes me feel overwhelmingly thankful, angry, frightened, and guilty all at the same time, making it difficult to process.
I just have to keep reminding myself, that despite all of these feelings, God is always on our side and I must cling to what He says. Like in Matthew 11:28-30 "
vicious cancer, that does not just hang around for months without changing. This leads him to believe it could be mature Neuroblastoma cells that could just burn out, or something else along those lines. However, because Hazel is a "high risk" patient (meaning at a higher risk for relapse), ANY light is something serious. So he is meeting with her surgeon to go over the scans to see if he can remove it and help us get a better understanding of what we are dealing with. He is concerned, however, with its proximity to her kidney and vital vessels, and surgery may put her at risk of losing her kidney, which would not be ideal. If surgery is too risky, we may have to consider further treatment (i.e. more accutane or the possibility of chemo). In conjunction with these scans, they also test her urine for catacholamine levels. If elevated, it can be a marker for disease. Her last tests were normal, so that is very hopeful, but we will not get the results from this go around until Monday. Her oncologist will take her scans, urine sample results and blood work all into consideration and will be meeting with Hazel's whole team on Thursday to discuss what we should do from here. So hopefully we will have a bit more information by next Friday. SO PLEASE PRAY FOR CLARITY FOR THE DOCTORS, PEACE FOR OUR FAMILY AND HEALTH FOR MY DAUGHTER!!