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.

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. 

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.

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

    

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. 



   

Update and Scan Results

Hazel finished her third round of treatment, and it went very well! She felt felt pretty good the whole time, and even spent quite a bit of time up and out of bed. After coming home, she felt pretty tired and nauseous for a few days, but bounced back very quickly. She has been going to school, the pumpkin patch, sleep overs and play dates, celebrated both of her brothers' birthdays, lost another tooth, and has just spent time enjoying being a kid! Im so thankful for such gloriously normal time, especially leading up to her scans.

Now the scan results:

The scans have shown that the treatment is not working and the tumors have grown....Good news is that they have only grown a very little bit and the doctor believes the tumors are not very aggressive. The treatment probably worked in the beginning, but the cancer has already figured out a way to overcome it. It is probably helping to slow the growth, but this is just not enough. We want the cancer to be disappearing, not inching forward!!

So we are switching gears. Hazel will begin a new therapy that involves a targeted inhibitor for her ALK mutation, paired with two types of chemotherapy. The nice thing is that the ALK inhibitor is a pill to be taken twice a day, at home; and the chemo is every three weeks, for four days, and administered outpatient! The tough thing is that this chemo has a higher toxicity level. So she will indeed lose her hair, feel more unwell, and will become immune suppressed (causing more unplanned hospital stays and being less likely to go to school). They want to give her the next week off, feeling she is stable and strong, and then begin treatment the following week. We also will still continue with all of the complimentary and natural therapies we implement at home. We are literally trying everything we can!

The doctor is still remaining hopeful, because even though the treatment we all thought would work best, has not worked, we are not yet out of options. Not only are we not out of options, but the options we have left are still promising.  Hazel's genetic testing of her tumor came back, and it actually has a couple of different mutations that have targeted therapy. The ALK mutation, has the targeted therapy that is currently in use; and another drug, that is even more promising, that should be approved in the beginning of the year. If the one we try next doe not work, our hope is that she can remain stable enough to try the next one in the new year. The doctor said we have a bag full of keys, and one lock. We just need to find the right key. My worry is that because relapsed Neuroblastoma is so unbelievably tricky and clever, we may not have the right key at all. So please be praying that we find the right key!!!! Thankfully, because her tumors are not aggressive right now, we still have time to try and figure it all out.

To be honest, we were very disappointed to hear this news, but the more we spoke to the doctor and with each other, the more hope we are beginning to feel. We are still scared, unsure and overwhelmed, but we still have hope! And the bible says in HEBREWS 6:19 (the bible verse on our Hope for Hazel shirts) "We have this hope as an anchor of the soul. Firm and secure". So please be praying for our family that we can continue to cling to this hope and begin to feel the peace only God can give.

Scan Results

     Today was a very long day for Hazel and I.  We checked in early this morning for scans, which is a very long process.   She did not finish waking up from sedation until about 2:30pm.  Then we met with the doctor around 3:30pm to go over results, and then we were sent to get her first dose of her next round of treatment in the infusion center.  We finished this process at around 8:00pm so they decided to just admit us onto the oncology floor instead of having us check back in tomorrow morning.  We finally just got settled, so I can now fill you all in on the results.

     First of all, Hazel's bone marrow biopsies came back clear!  So this means that the cancer has still not spread to her bone marrow!  Her scans, however were not as obvious.

     The results of her scans are actually a bit complicated and convoluted. But after much discussion and deliberation with her doctor it boils down to this:  Her scans have changed since the last set of scans, but it is too difficult to tell if these changes are positive or negative.  The spot in her neck grew larger, but looks like it is not lighting up as much, and even appears that it may be dying from the inside out (but this may not be the case).  The other spot(s) in her abdomen are slightly smaller, but are lighting up brighter.  

     Unfortunately, the way that PET scans determine uptake, does not actually reflect Neuroblastoma very accurately.  So, these brighter spots could just be brighter because of inflammation, or indicating the immunotherapy is doing it's job.  But it could also indicate that her cancer is becoming more active.  It is not usual for a Neuroblastoma patient to receive regular PET scans for this reason.  Usually, children receive MIBG scans. These scans are Neuroblastoma specific, and only light up if there are Neuroblastoma cells, and not for any other reason (with the exception being scar tissue related to previous Neuroblastoma spots).  Hazel did not receive the MIBG scan this time because the one she received in August did not light up, when the PET scan did.  The doctor does not really like doing PET scans because it does not give her the information she is really looking for, however, we needed to do these as a comparison.  Unfortunately, the results were so mixed that it did not give us an accurate comparison.

     So we had to spend much time discussing whether or not to proceed with the current treatment Hazel is on, or to try something different.  Most kids who respond to this treatment, do so fairly quickly, so the doctor is concerned that she did not show a very overwhelmingly positive response. So her first thought was that this may not be working, so we should move on. But again, with the PET scan not giving us the most accurate data, we may not really know if she has responded or not.  So we have decided to do one more round of this chemo/immunotherapy combo this week, and in two weeks have her do an MIBG scan.  The hope is that the original MIBG scan did not light up because we were so early in Hazel's relapse, and that it has been long enough for it to show up.  So maybe we can get a better idea of what is going on in there.

     This does, however present us with a couple of dilemmas.  The first is that we are continuing a treatment that may not be effective for her, which, in turn would only be allowing this cancer to grow these next two weeks.  I pray that this is not the case, but if it is, we will move onto something new immediately.  More than likely, it will be the directed therapy for her ALK mutation.  The second, is that this is working, but her new tumors are no longer MIBG avid and will not light up on the MIBG scan either way.  If this is the case, we will do another PET scan to see if we can see any changes from these last two scans.  Both the PET and the MIBG scans are also done with CT scans, which is the scan that gives us our measurements, but does not measure cancer activity.  So we will still get measurement comparisons with both scans, which is good.  

     As you can see, we got a lot of complicated information today, and I didn't even share all of it.  My brain is on overload now, and I am in a bit of a fog, so I hope that this is clear enough for you.  But really, all I need to make clear is that our little Hazelnut still desperately needs your support and your prayers as we continue treatment, trying to make the best decisions, and follow this disease closely.