Saturday, February 18, 2017

A Quick Update



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

     From the bottom of my heart, thank you for your prayers and good thoughts these past couple of days.  Seeing you all rally around us was incredible and such a blessing of comfort and encouragement.  Something I forgot to share in my last post, which made leaving on Thursday evening even more difficult, that Friday the 17th was Hazel's big sister, Elizabeth's 8th birthday.  It tore my heart apart having to be separated and knowing that cancer was, once again, taking something away.  Well through the incredible devotion of my husband, who stayed home from work to make sure she had a great birthday, and through the grace and love of our community of family, friends and even strangers, Elizabeth had such a wonderful day!  Aaron and I were able to plan a scavenger hunt for her to find her present.  He took pictures of some clues in our home and emailed them to me, so I could text them to Elizabeth on Aaron's phone when she got home from school.  She just loved this!  And all throughout the day, people came by and brought her cupcakes, flowers, balloons and cards, many of which she knew came per Mommy's request, so she didn't feel like I forgot her. When I spoke to her last night, I asked her how her day was, and she replied with and enthusiastic, "GREAT!".  My Mommy heart felt such a swell of relief!
     
     As for our little Hazelnut, she woke up today, a brand new girl!  Her counts jumped up, her energy and appetite increased tremendously, and her spirits seemed to be headed back to her usual joy filled place.  On top of that, for the first time in four inpatient stays, we were finally taken off isolation!  Boy, what an amazing change it was to be able to go out of our room, and just take a walk!  We hardly spent any time back in our room today!  She was in the playroom, set up a tea party in the family lounge for us and her nurses, had a dance party and walked and walked and walked, of course with her and I donned with princess tiaras and fairy wands and blasting music from her iPad, just spreading joy wherever she went.  It was so good for my soul to finally see her this way.  It helps remind me that it is true that "weeping may stay through the night; but rejoicing come with the morning" (Psalm 30:5).

     She's  actually felt so well, that they discharged us at midnight, tonight ! So we got to go home! 

More post after these photos:







     
     While she was feeling well, this stay has still been difficult.  Not because of how she was feeling, but because what cancer does to every family.  We saw and heard many things this stay, that reminded me of why I fight so hard for more awareness and for a cure!  As we walked the halls, we saw families breaking down in tears, just outside their child's room, likely from a new diagnosis, or facing the end.  We met another family, who's child just received a diagnosis that is considered terminal, a word not uncommon out of the mouths of many childhood cancer families (this should just not be so!).  And right next door, is this beautiful 1 year old baby, who unfortunately has been entirely alone our whole stay thus far.  As an added difficulty, she has been on isolation, so she cannot be held by the nurses as they do their charting, and has been stuck sitting in her crib, day in and day out, all alone.  As I hear her cry, and no nurse is around to comfort her, my heart shatters in a million pieces, thinking about how she just wants to be held and loved, and does not know why no one is there.  Hazel and I have spent much of our time in her doorway, singing her songs, playing peek-a-boo, waving hi, and doing whatever we can to show her some love and bring her joy.  It is moments like this that make me so incredibly grateful for the support system we have.  I see, so often, how much Hazel needs me for her care and even just for her comfort, but thankfully, there has never been a time where she has been left alone for extended periods of time.  But some families do not have the kind of support we have.  Some come from other states, or even other countries, for treatment, and have no one to help.  Some are single parents, or have to work several jobs to make ends meet, or have other children at home who have no one to take care of them, and since the child in the hospital has a wonderful medical team to take care of them, those families have to make the impossible decision to leave that child alone while fulfilling the other responsibilities that need to be met.  

     So as you pray for for us, please pray for the families who are struggling through this journey, some on much more difficult paths as we.  They need a community like ours to help carry them through.  So if you know of another family in your community, please reach out to them.  Or find local childhood cancer charities in your area, and they can direct you to how you can help!  Help these families know they are not alone!!

Friday, February 17, 2017

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.



Wednesday, February 15, 2017

Another Round Complete

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     Let me begin by saying how humbled I am by the outpouring of support, love and encouragement I received after my last post on hope.  It felt so heartening to know that my honesty and transparency about my own struggles was something that not only spoke to you and brought about awareness for the lives that families with a child with cancer live, but also brought encouragement to those of you who may struggle with the same things.  So thank you, from the bottom of my heart.
     Second, I apologize for not posting here sooner, but since our last post, our lives got very overwhelming, with some positive and some more challenging things.  We spent time celebrating and savoring Hazel's birthday!  We went to Disneyland with our family, hosted a birthday party (combined with her big sister Elizabeth, whose birthday is very close) and were the grateful recipients of a special Unicorn Party put on by the amazing foundation Create A Smile (a product of the love and devotion of a fellow cancer fighting family, The Youssef Family, to other children fighting this disease).  







     Unfortunately, in the midst of all the blessings and fun, our whole family developed very bad colds, including Hazel.  And, for me, it turned into one of the worst flus of my life.  We were dealing with illnesses for the better part of two weeks, and boy I was exhausted!
     Not long after recovering, and with Hazel and I still affected by a lingering cough, we began her fourth round of chemo.  We had to be down at the hospital (45-90 minutes away, depending on traffic), every morning by 8:00am, and stay for several hours while the infusion was completed.  We were able to have the weekend at home, but come Monday morning, Hazel was extremely run down and spiked a really high fever.  We rushed back to the hospital and were admitted.  Her white blood cell counts were absolutely zero, so she was extremely neutropenic and fighting a fever.  So antibiotics were begun to protect her from anything life threatening.  The challenge with these antibiotics, is they cause her severe diarrhea and cramping, and quite a bit more nausea.  The last two inpatient stays, her gut was so upturned, that she developed C-DIFF, which had to be treated with more antibiotics that made her equally nauseous. Thankfully, this stay, she DID NOT DEVELOP C-DIFF!!!  We were able to break the vicious cycle, if only for one cycle!  So thank you for all of your prayers, because they are clearly working!  Thank you God, for giving our daughter a reprieve!  
     Although she did not develop C-DIFF, she did still have some pretty significant diarrhea.  I spent most of those first days helping her through her discomfort and encouraging her as she would tell me, through tears, "I just want to be done feeling like this!"  When the urgent diarrhea stopped, she then developed a profuse bloody nose, that lasted throughout much of an afternoon. Not only was this terribly frightening for her, but the clots that developed after, slipped down her throat, making her gag a vomit them back up.  She found it increasingly more difficult to cope, and it just broke my heart.  Thankfully, over the next several days she felt better and better, and we were able to return home very late Sunday night.  To say we are exhausted would be an understatement!




     Clearly, these treatments, and subsequent inpatient stays have really begun to take their toll on our little Hazelnut.  Because she has been so nauseated and vomiting almost daily (sometimes, several times a day), it has made it difficult for her to keep weight on.  As her counts keep getting knocked down to nothing, she barely has time to recover in time for the next round.  She is so tired and unsettled from the constant traveling and changing in schedules, and is becoming more and more frustrated with not feeling well.  Despite her challenges though, God has blessed her with a spirit of bravery and perseverance that has carried her through each day and each challenge.  She faces each treatment and hospital stay without complaint, she breathes deeply through every single poke, and she even spends time reassuring me (for example: "Mom, it's ok if I throw up, because I always feel so much better afterwards").  
     Her perseverance inspires me every day, and brings me so much hope.  I am reminded of the bible verse  Romans 5:3-5 "Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.