Unpredictable

TO HELP OUR FAMILY, JOIN HAZEL'S CARE COMMUNITY BY GOING TO Here to Serve AND FILL OUT THE REGISTRATION FORM

     Unpredictability is the name of the game when you have a child with cancer, and yesterday was no exception.

     Only a day after updating you all that we were home and Hazel improving, things swiftly changed.  For most of the day yesterday, our little Hazelnut just did not seem much like herself.  She did not eat very much, and complained of being unusually tired, especially when she had to get up and move.  While not uncommon, I definitely felt that something may be up.  She also was bruising all over, which indicated to me that she was in need of platelets.  Nurse Cyndi, our home nurse, came to draw labs in the morning, and I was expecting a phone call telling us to come Friday for platelets, but was surprised when the hospital called and said her white count and hemoglobin had also dropped again.  They said that I could just keep a watch on her though, and we would assess her when we came in for the transfusion the next day.

     Not even an hour later, I went to hug her, and felt her burning up!  So I took her temperature and she was at 101.4.  When I called the nurse, they told me that we would need to come into the ER immediately, and plan to stay.  Needless to say, she and I were very frustrated with these turn of events.  But, truthfully, I was more panicked then frustrated.  Hazel has never spiked a second fever after her counts dropping and rising after chemo.  So to me, this fever signaled that something could be seriously wrong.  Coupled with the fact that Hazel crashed pretty hard after this phone call, falling asleep on the stairs while I was packing, I was terrified.

     Our other children, upon hearing that we would have to leave again after only being home for a couple of days, were utterly heartbroken.  Sobbing and clinging to my dress and extremities, they begged us not to leave.  It was so difficult to try and explain how potentially dangerous this fever could be, without frightening them, and about why it was so important for us to get to the hospital to treat it.  All they knew, was we were leaving again, and they would have to just keep dealing with these changes and adjustments.  Cancer is so hard on the whole family....

     Once arriving in the ER, around 7:30 last night, we were quickly admitted and, of course her fever had dropped.  But because she spiked at all, it is required to be admitted until her blood cultures show that she is clear of infection (results take 48 hours).  It was also time to access her port.  Hazel was so angry, scared, and tired at this point, that she was clawing her way out of my arms, screaming at the top of her lungs.  After about 15 minutes of holding her tight and helping her through her emotions, she amazed us all by getting herself ready, taking some deep breaths and counting to 3 for her pokes.  She simply astounds me.

    They were able to start antibiotics and fluids right away, and sent off for her platelets.  In the time we were waiting for the nurse to return, she began vomiting uncontrollably and did not stop for about 30 minutes.  Halfway through this time, she also needed to use the restroom, having diarrhea as well.  As she was in the restroom, vomiting and on the toilet at the same time, she was so tired and was falling asleep between retching as I held her up in a sitting position.  After a dose of Benadryl to help control her nausea, she fell asleep and did not vomit again.  We were admitted to the floor and settled in our room at 2:30 this morning, and were absolutely bone-tired.  

    Thankfully, she was able to sleep right on through the night, and woke up feeling much better.  She is still very nauseous, and not really eating, but the vomiting has been controlled, so I am grateful for that.  Her hemoglobin was low again, so they gave her blood this afternoon, which definitely seemed to perk her up. But her white blood cell counts dropped again this morning, so there is no sign of us being able to go home anytime soon.

     Her bone marrow biopsies and scans are scheduled for Monday and Tuesday, so we may still be here for those, but if we miraculously get discharged before then, we will head back down both days.  Please be praying for these results.  I truly believe all of this is because the level of toxicity in her body is reaching a point that she is having a much harder time recovering and is simply not tolerating it anymore, so good scan results could mean seeing an end to all of this.  And please, let me kindly ask, for no comments telling us that we are poisoning our daughter with chemo, and that some miracle plant of food will cure her cancer.  Please believe me when I say, we do not make these decisions for her treatment lightly.  It isn't easy seeing our daughter this way, but we are doing everything we can. We follow as close to a ketogenic diet as we can, keeping out sugar and processed foods; we use several detox techniques, have her on a full and strict regimen of Cannabis Oil, probitoics and supplements; use essential oils daily, and so much more.  Even knowing how wonderful, and successful all of these things are, Neuroblastoma is a vicious, and smart beast.  We truly believe that her life not only depends on these natural therapies, but also on working in conjunction with the best that western medicine has to offer.  So please know, we are doing everything we can, and these decisions are not easy, and unless you are in our shoes, you cannot make them for us.  That being said, I so appreciate and am humbled by your hearts of concern and all the support and prayers you have all given our family. It lifts us up in these difficult, and sometimes dark times, and I truly could not get through these days without it.