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.

Tuesday, January 17, 2017

Hope

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    As many of you likely saw on Facebook, our little Hazelnut spiked a fever and we were admitted to the hospital last Wednesday evening. This has become a usual pattern with this new treatment, making it very difficult for our family to feel any sense of routine. Thankfully, and I believe because of all of your prayers and support, Hazel felt better than any other visit!  Although she did end up contracting C-DIFF once again, she has been powering through and her spirits remain high.  She has done so well, in fact, that her counts began to recover faster than ever and we were actually discharged yesterday evening!!! Now we are home, helping her continue to recover, and we start her next round of chemo on January 30th.  After this upcoming roound, she will repeat her scans to see if this treatment, and all of the integrative therapies we do at home, continue to shrink these tumors! Tentatively, these scans are slated to happen around February 21st or 22nd.
     



     Now, I do not think it is an accident that our dear girl did better than any other round after receiving our recent hopeful news with the last scans.  I have come to realize that HOPE has played, and continues to play an extremely important and pivotal role in Hazel's journey on this arduous road. And to be honest, HOPE is something I have had a difficult time holding onto since her relapse.
     
     I want to take this opportunity to be totally transparent with you.  If I choose not to be, I do Hazel, and every other family like ours, an extreme disservice. These children, who are fighting for their lives every day, receiving treatment that is far too toxic for their little bodies, and only get a measly 4% of our national cancer budget, have earned the right for me, and everyone else for that matter, to be completely and wholly honest with the world.
     
     Throughout our fight with childhood cancer, I have had to figure out how to manage a lifelong involvment with depression. Through faith, and HOPE, I was able to manage it fairly well throughout Hazel's first fight with cancer, only having some small dips in the road, but it still being ever-present.  Toward the end of treatment and continuing through her 2 1/2 years of clear scans, PTSD reared its ugly head and exacerbated the already underlying depression.
     
     While I should have been at my most joyful, my most thankful, my most hopeful; I had times where I struggled to get out of bed in the morning. And the fear of cancer coming back and tearing my daughter, my family and myself apart once more, was something so palpable, I could hold it in my hands and feel it's effect wash over me like a tidal wave.
     
     I found that giving back to the world of childhood cancer became my purpose, my passion, my therapy. It helped to be able to pull up my boot straps and give cancer a tangible kick in the face by making the world aware of it's hideousness and by raising money to help annihilate it, once and for all.
  
     When Hazel's cancer returned, I was not prepared (but really, who is?)

     I walked into those routine scans, with a smidge of confidence for the very first time.

     Hazel was stronger and healthier than ever!

     Those scans must have been someone else's.

     Hazel was 2 1/2 years in the clear, she had to still be clear!

     We had invited employees of St. Baldrick's to join us at our appointment to get the good news, and just filmed a video for them celebrating her milestone.

     Unfortunately, it was real. It was not a dream, but it was one of my very worst nightmares. 

     Hazel's cancer was, indeed, back again.

     I have been intimately aware of the realities of relapsed Neuroblastoma, losing many friends to it, and fighting it with all I had.  So when the news of her relapse became more real with each day, my hope and faith drifted farther and farther away, bottoming out to an all time low.

     Facing each treatment felt like I was being pulled deeper and deeper underwater, away from any sign of a rescue boat. The only thing that kept me from drowning was watching how unbelievably brave my daughter, the real champion in this fight, was being while fighting this beast a second time.  If she can do this, so can I.  But the reality of potentially losing my beautiful, precious baby girl to this monster has been inescapable.

     Hazel's follow up scans came during the first treatment we tried.  A treatment that was described to me as "the closest thing to a home run in the relapsed Neuroblastoma world". This treatment was the very first semblance of hope that I had since her relapse, so when the scans showed her tumors still progressing while on it, my very little hope was completely shattered.

     Switching gears to a therapy that was more targeted for Hazel seemed like the right, and even more hopeful thing to do, but instead of being filled with HOPE, I remained filled with trepidation.  I walked into those next set of scans, right before Christmas, hopeless, and begging God to just "show up". 

     Boy did He!  Not only was this treatment working, but our little Hazelnut's tumors showed a significant response!  Some are dying, some shrank more than 50%, and I finally felt like we had a fighting chance in this battle.  For the first time in months and months, I FELT MY HOPE RESTORED!

     This hope ripped a hole in the heavy, dark cloud above my head, and I finally felt the warmth of the sunshine fall upon my face. 

     I could take a deep breath without heaving.  

     I could hug my daughter without sobbing.

     I could answer the question "How are you?" with an honest "Pretty good!"

     So when I say I do not think it was an accident that Hazel recovered this round better than ever, I think it is because it is in direct correlation to me being filled with HOPE once again.  I think she could sense a renewed spirit within me, and she herself could be renewed.  And I wholeheartedly believe that God knew we all needed a little bit of HOPE, and time home together, and helped her body heal in this miraculous way.

     While I found some HOPE to finally hold onto, I still ask for you to pray for me. Pray that I may be helped in my unbelief and doubt. Pray that I can be open and willing to talk about my depression, so I can be led on a path to overcome it.  And pray, that despite all of these things, I can remain steadfast and strong for the one who needs me the most; my little Hazelnut. 

Monday, December 19, 2016

Unplanned Stays

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     Our little Hazelnut is still in the hospital or this unplanned visit. Much like her frontline treatment, Hazel has spiked neutropenic fevers after each round of chemotherapy, sending us to the hospital.  This is done to protect her and to keep a watchful eye on her, for when her blood counts are this low, she is in danger of contracting very dangerous illnesses/diseases and even going into sepsis.  The doctors put her on doses on antibiotics to protect against these potential risks. However, the antibiotics (even when we have her on a daily probiotic) can wreak havoc on her gut, and can kill all the good bacteria that is used to fight some of these infections, thus allowing some bad bacteria to potentially grow.  It is difficult to weigh the risks and benefits to these antibiotics, and to be honest, I am still unsure of the right decision for her.  Last time, she ran the course and came out of her neutropenia unscathed.  This time, however, she has developed a GI issue called C-DIFF, which causes some pretty extreme diarrhea, and she also has caught a cold.  This has made our stay not as easy and has also put us in strict isolation.  But true to form, Hazel continues to remain positive and finds the joy in each day (much better than I do, I'll admit).  While uncomfortable, these two complications will NOT keep us in the hospital longer, unless more complications arise. However, her counts still remain at zero, so we currently do not have any plans to go home. So please be praying for a miracle to get us home by Christmas!

     Hazel was also to have her scans this Wednesday, to asses this treatment's efficacy.  Thankfully, the scans will still be performed, as planned, but we will just be inpatient as we do them.  This actually makes things less complicated for me, so I suppose there is a silver lining to be had!  Please pray for these results, as we will get them the same or the next day!

    Despite not quite feeling herself, Hazel continues to radiate her God given JOY.  She has spent much of our time here thinking about all of the other patients on the floor. She made presents for, gave some of her unopened toys to and wanted to visit and cheer up our roommate (who we shared a room with before we were put in isolation). And she wanted to make every child a handmade star with a heart in the middle and written on it, in her word and handwriting " FOR KIDS AND HOPE". She said, and I quote, "Every kid has to go through treatment, and surgery and stuff. And they don't feel good, so I want to bring them joy."  Boy this girl just fills up my heart to the brim!  I have really been struggling to find the joy lately, but God is certainly using my own daughter to teach me immeasurable lessons.





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.