Tuesday, November 29, 2016

Hair Shaving Party!

     Since coming home for Thanksgiving, our little Hazelnut has been doing well.  She was very tired for the first few days, but has only been getting better!  We had a wonderful time with family this past weekend and were so incredibly thankful to be home.  Per her treatment plan, we were supposed to begin her next round of chemotherapy yesterday (11/28), but her counts have still not recovered completely.  Her Absolute Neutrophil Count (ANC) should be above 500 to not be considered neutropenic, and a normal range is actually closer to 1500.  When her blood was measured yesterday, her ANC was 320.  Considering they had been at zero for about two weeks, we are so glad to finally see them climbing upward!  However, because they are still under 500, she is still very vulnerable to infections and certainly not strong enough to be knocked down again by chemo.  So the doctors and we decided to wait another week to give her time to recover.  She will have her next round of chemo beginning on December 5th.  This also means, her scans to determine her progress will also be pushed another week, placing them just days before Christmas.  My whole heart wishes we will get a Christmas miracle and have good scan results, so please please please be praying!
     While this weekend was filled with a lot of family time, we also found that it was time to shave Hazel's head.  The chemotherapy has been making her hair come out in droves, and it was beginning to bother Hazel.  She actually has been asking to shave it for weeks!  She used to love having a bald head and putting fake tattoos all over it, so she has been looking forward to being bald again.  Leave it to a beautiful child to have this perspective, right?!  We could all learn so much from her!  Now, all of our children (except the baby) have been wanting to support their sister in any way that they can. This head shave was no different.  They all wanted to stand in solidarity with her and decided to shave (Aaron and I did as well)!!! It was a very powerful, emotionally moving and empowering experience.  Here are a few photos from the evening:

Hazel's 7 1/2 year old sister, Elizabeth
Hazel's 4 year old brother, Jonah

Hazel's 10 year old brother, Micah
Our family photo (minus the baby)

My absolute favorite photo of the night

Tuesday, November 22, 2016

New Treatment

     On November 8th, Hazel began her new treatment.  She now takes a daily pill called Xalkori.  This ALK Inhibitor is the targeted therapy that I have discussed before, and targets her ALK tumor mutation.  Common side effects with Xalkori use include upper respiratory infection, nausea, vomiting, stomach pain, decreased appetite, insomnia, dizziness, blurred vision and/or floaters, tired feeling, diarrhea, constipation, rash or itching, cold symptoms (stuffy nose, sneezing, sore throat), numbness or tingling, or swelling in your hands or feet. We have noticed some of these side effects already, and it was difficult for Hazel to adjust at first, but she seems to be adjusting more now and taking it in stride (which breaks my heart to even have to say that!). 
     In addition to this daily medication, she began her first cycle of chemotherapy.  She receives to different chemotherapies for 5 days in a row (thankfully outpatient), every three weeks.  These particular chemos have made her feel pretty nauseous, and she spent quite a few mornings vomiting.  We now have her on round the clock nausea meds, and in combination with the cannabis oil and essential oil regimen she is already on, we seem to have it under control.  Her hair is also falling out in fairly large clumps, so a head shaving party is in the works!
     As expected this treatment has caused our little Hazelnut's blood counts to drop dramatically.  As some of you may have seen on Facebook, she spiked a fever after her counts dropped, earning us a spot on the Oncology floor at the hospital last Tuesday.  Typically, a fever spikes and it is just indicating that these counts are dropping.  However, a fever could also be a sign of an infection and when her counts are zero, she has no immune system to speak of, so an infection can be extremely dangerous.  While in the hospital, Hazel receives prophylactic antibiotics to protect her from any potential infection, and her blood is sent for testing to see if anything is indeed growing.  So far, she has had no signs of infection, so for that we are thankful!

     Currently, we are STILL inpatient, not because of any infection, but because her counts have remained at ZERO!  We cannot be discharged until her counts begin an upward trend and get closer to a safe range (her Absolute Neutrophil Count or ANC needs to be close to 500 or above). Last week she spent much of her days in bed, feeling tired and unwell.  However, since this weekend, she has felt much better, and has spent absolutely NO time in bed!  She has been playing, having dance parties, doing crafts and school work, and eating up a storm!  So for being stuck as long as we have, we can still rejoice in her feeling well! A verse that someone shared with me recently has spoken volumes these past weeks.  Lamentations 3:22-23 " Because of the LORD’s great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness."

     Please be praying for our Hazel's counts to recover in these next days so that we may be home for Thanksgiving.  We have been in the hospital for many special occasions and holidays before, and it is not easy to be separated.  Not only on Hazel, but on our other children and on both Aaron and I.  Pray that this verse can ring truth into our lives, that we may not be consumed by the stress and the difficulty of what we are going through, but instead rely on His compassion and faithfulness.