Tuesday, June 25, 2013

Some Normalcy

    These last few weeks have been absolutely wonderful!  We have definitely felt the power of your prayers because our little Hazelnut never developed her usual neutropenic fever, so we never had to be re-admitted to the hospital. This meant that we were able to stay home the entire time between treatment!  GOD IS SO FAITHFUL!!!!  1 John 5:14-15 has truly come alive for me these last weeks and it says: "This is the confidence which we have before Him, that, if we ask anything according to His will, He hears us.  And if we know that He hears us in whatever we ask, we know that we have the requests which we have asked from Him"
     With all the time God blessed us with, our family unit was able to return to a sense of normalcy, and we were savoring every minute.  We were able to have every meal together around the table (something I will never take for granted again, especially since some of our most meaningful conversations and prayers happened here); we played, watched movies, visited family/had many visitors, had a family campout in the backyard, celebrated Father's Day and my Grandparent's 60th Wedding Anniversary and much, much more!  Aaron and I went on more dates these past 3 weeks, than we probably have in the past 3 months!  We took advantage of this really good month, because we don't know what the next month (let alone tomorrow) is going to hold for us.  One of these dates, we celebrated our 8-year Anniversary, because it actually tomorrow, and Hazel will be in the middle of her 4th round of Chemo.  We have never spent an Anniversary apart, so this is definitely difficult; but given our new reality, we were able to appreciate and cherish our celebration like never before.
     In addition to all of this family time, we also had our local newspaper, The Ventura County Star, interview/photograph our family to be featured on the front page sometime this week(!) and had two separate blood drives!  I feel that it is no accident that Hazel's story is spreading around the world and have been amazed at how many people God is reaching through my little daughter!  For example, at today's blood drive, we had over 100 people walk through our doors and we were able to have 75 blood donations taken by CHLA!  I have also been encouraged over these last few months because God continues to bring people into our lives who have walked this very path that we are on.  We have met several children who were diagnosed with Neuroblastoma (many of whom began their journeys in a more difficult place than Hazel) and are not only in remission (or as we like to say NED/No Evidence of Disease), but thriving!!  This has helped each of us in ways I cannot begin to describe.
    As far as how Hazel has been doing, I continue to be surprised and delighted because she has been doing so well!  After she finished Round #3, her nausea continued only for several days, and she returned to her usual disposition in no time!  She began to have bleeding from her nose around the same time her blood counts were low, so we went in to the hospital for an outpatient blood and platelet transfusion.  It's amazing how quickly she perks up after receiving blood.  Thank you to those who have donated, for you are saving my daughter!  We are now sitting in the hospital preparing to begin Round #4. Among the many side-effects that can occur, one that can be more difficult can arise during this round, and it is called Mucositis.  In layman's terms, mouth sores.  These sores can occur all along her digestive track and can be very painful. PLEASE PRAY SPECIFICALLY FOR THIS, FOR I AM QUITE ANXIOUS ABOUT IT!  I know my God can work miracles, so I am comforted to know that so many of His children will be praying for her this week.  If she does well enough, we can return home on Friday, but if she is struggling, we will be here a little while longer.  She doesn't mind at all, and is actually happy to be here!  She was looking forward to "getting her bed", "cooking in the playroom" and visiting the many friends she has met (nurses and patients alike). So here's to hoping that this week goes as well as the last and we will keep you all posted!  Here are a few pictures of the last few weeks:
From today's blood drive

At the Oxnard Blood Drive 

At our backyard campout!

Friday, June 14, 2013

Awesome News!

    We got some awesome news yesterday and thought I would share with you all!  When our little Hazelnut was first diagnosed, one of the indicators that led to it was a urine test that measured something called Catecholamines, that are organic compounds/chemicals released through the nervous system.  Since Neuroblastoma is a nervous system tumor a doctor who suspects a patient may have a tumors will check their urine for any elevation of two specific catecholamines: Vanillylmadelic Acid (VMA) and Homovanillic Acid (HVA).  In April, Hazel's VMA was almost 5 times normal and her HVA was 11 times normal!  This was one of the determining factors in her diagnosis.  Now that she has had three rounds of Chemo, we asked to have this test done again so we could have some small indication that her tumor may be shrinking.  We just got the results yesterday!  Her VMA went down to 3.6 times normal and her HVA went down to 6 times normal!!!!!!!!!!
   Needless to say, we were so elated to hear this news, even if it is just a small piece to the puzzle.  We will know more when she gets her next scan, which will be sometime before her surgery (which comes between Cycle 5 & 6); so we should have some more information soon!  Thank you all for your prayers, God has been lifting us up with them tremendously and is doing a work in our little girl!!

Thursday, June 13, 2013

Doing Well

     Just a quick update: Hazel is doing really well!  She is eating and is off the anti-nausea meds, so we are very excited!  So far, she has not gotten a fever to send us back to the hospital, so please pray that it stays that way!  She will be getting some blood work done today to see where her counts are at and whether or not she will need a transfusion.  If her counts are good and she does not spike a fever, we get to stay home until the next round of Chemo, which should begin on June 25th or 26th!  I am so thankful that our little Hazelnut is powering through this leg of her journey and I can only continue to hope and pray that she continues to do so!
     In other news, Micah, Elizabeth and Jonah are extremely happy to have us home and we have been able to spend so much time together!  I took Micah and Elizabeth out to go bowling and  got some much needed one on one time with them.  Jonah is almost crawling, and is one of the happiest babies I have ever seen!  It's so good to know, that even though I am not around as much, he still feels loved and taken care of (which I have an amazing husband and a family support system to thank for that!).  Micah also just had his last day of 1st grade yesterday and Aaron begins his 1-month hiatus on Friday!  It will be so wonderful to have a small bit of time that is less hectic and will allow for some serious quality family time!  In August, Micah will start 2nd grade(!) and Elizabeth will begin Preschool! Please pray that we can all adjust to that new schedule, that the teachers will all be understanding and supportive, and that Aaron & I can be a part of as much as we can.  

Monday, June 10, 2013

Round #3 DONE!

     The five days at the hospital went pretty well!  It was tough at first because Hazel had an immediate allergic reaction (vomiting) to one of the Chemo drugs she was on, but once they switched her to a different form of the drug, she sailed right through! It was no where near as tough as I though it would be, so thank you for all of your prayers! I truly feel God is walking her through this every step of the way!
     On Saturday, just before our discharge from the hospital, she was given an antibiotic (one that she gets every four weeks).  As we were about to leave, she vomited.  The nurses and doctors said it was most likely a reaction from the antibiotics, but could possibly be a delayed reaction from the Chemo.  Either way, we could still go home if she was doing well enough.  So we gave her some anti-nausea medication, and waited about thirty minutes, and then decided to still go home.  She seemed to be doing well, but just as we were pulling into our neighborhood, she vomited once again.  She has not gotten sick since then, but has continued to be pretty nauseous.  She has eaten very little but is able to drink, so for that, I am thankful.  It could be much worse! Please pray that her body can recover quickly.
     Seeing her like this has been a challenge for our little family. We could all use your prayers this week as we support her on her way back to feeling better.  But despite how she is feeling, Hazelnut continues to be resilient and impress all of us.  I think we could all learn from the way children cope with illness and change.  They plow through this stuff in ways I could never dream of!  This journey has, and continues to, teach us so many things.  I think God is using this trial to change our family for the better, and it's just a matter of getting through it and coming out the other end!  Please continue to pray for us to get through it, and for us to be receptive to the lessons God wants us to learn, and to allow Him to change and mold us to better show His glory. 

Tuesday, June 4, 2013

A Realization


    As I sit here in the hospital as my little Hazelnut is asleep and awaiting the first night of her 3rd round of Chemo (it should start in about half an hour), I am reminded of a realization I came to earlier this week.  It has to do with the guilt, as a mother, I have felt over the last several years.  Mostly this has stemmed from social media allowing me to constantly compare myself with other mothers out there (Pinterest, I'm looking at you!); and if you are a mother, you probably know what I am talking about.  I see these crafty, creative, organized, calm, thoughtful and poised women who all also just happen to be able to cook amazing meals ever night; and I feel like I just don't measure up!  I am not this type of woman.  I may have some slivers of these qualities, but this is not the kind of mother I was built to be.  This feeling of perpetual inadequacy is something I have battled with tremendously and a quote by Theodore Roosevelt continues to really resonate with me: He said,  "Comparison is the thief of joy".  
     However, this past week, I felt God just wash this peace over me and He drew me to the aforementioned realization, which is this: I was made specifically by Him, and He made me in such a way to be a very specific kind of mother.  I truly believe He did not make me the crafty, creative mother; but orchestrated my life in such a way that I would be molded into the mother who could handle the trial that I am in now.  He knit me together with this journey in mind, and has given me the unique qualities (which have been molded through my life experiences) that have equipped me for this moment in time.  I no longer care about being the mother I was not made to be and am extremely thankful that He made me the mother that I AM!  
     As I finish this post, the nurses are walking in with the Chemo and are ready to administer, so please keep my daughter in your prayers this week!  I will keep you updated on how everything goes!