Monday, March 26, 2018

Reality and Hope

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     I know I have been a bit MIA from the blog, in favor of posting updates on Instagram and Facebook, because it was easier. But I knew that many of the army of people praying for and supporting our daughter only get their updates through this blog, I knew I would need to consolidate everything that has happened recently.

     If you haven't seen my Live Video on Facebook, I would encourage you to check it out if you can. I recorded it during a time where I couldn't really wrap my mind around what was going on, and I think it turned out to be a really effective way for you to see my heart.  Writing, while effective in communicating information, doesn't always convey how emotional this childhood cancer journey can be for a parent.

     For those of you who can't watch the video, here is a brief update:

     My last posts before the video had detailed how Hazel was recovering from some difficult treatment for her relapse.  Despite the harsh side effects, Hazel recovered well, and she had a set of scans that showed incredible improvement.  The tumors shrank by 30-40%.  We were finally feeling hopeful! She was feeling so good and was enjoying being home and being our little Hazelnut!




     Just a couple of days before Hazel was set to start the next round, I noticed that she was not acting quite like herself.  She was run down, couldn't get comfortable in bed, and just all around feeling "icky".  However, she wasn't in the extreme amounts of pain she had been in the past, so I tried to silence my anxieties and chalk them up to cancer parent paranoia (it's a very real thing).

     But come Monday morning, before I headed to the hospital, my gut kept telling me I needed to call the doctor.  And it was God who spurred on my "mother's intuition" back in 2013 that led to Hazel's initial diagnosis.  So I called her oncologist, and said, "Hazel is just not herself, and I'm not entirely confident that she should start the next round of chemo.  I think we should move her scan from next week to this week instead."

     After a few questions, Dr. Marachelian agreed with my assessment, and they scheduled an emergency CT for that afternoon. Hazel was asleep in the stroller when I got the text from her doctor:
I want to see you in clinic. It's worse. 
Come up now and we can chat.

     My heart was in my throat, and I called Aaron to rush over to meet me at the hospital.  I pushed Hazel's stroller and got to clinic in record time.  Thankfully Aaron had made it to the room before Dr. Marachelian arrived, because the news we had coming needed to be heard together.

     The scan, which was on March 5th, showed that although the two major tumors we have been watching were still stable, there was an abundance of new disease.  The doctor noted at least 5 lymph nodes that were now affected with cancer, and possibly more that we just couldn't see.  It was clear that Hazel's cancer had, once again, figured out away to resist the current treatment we were on and we were to stop immediately.  Dr. Marachelian was visibly worried, and Aaron and I were just broken.  She wanted to get a a PET Scan, because it would give us a clearer picture of what was going on.  Her concern was that it was going to be more involved than what the CT was showing, and if it was, we may not have a lot at our disposal to try and treat it.

      Aaron and I spent those next few days in a state of shock.  I cried myself to sleep every night.  My brain was making plans.  Plans that I did not want to make, but were happening anyway....

     We were home only for a half a day though, when Hazel spiked a fever and we ended up inpatient at the hospital.  By the end of the week, Hazel's pain was increasing and her well-being was decreasing.  So we ran the scans and a few other tests while we were there.  We got the news that the PET/CT was actually NOT worse than the CT.  It looked exactly the same!  Of course, this wasn't news that an average person would categorize as "good", but when all you have been given is bad news after bad news, a scan like this does become good news.

     I was thinking that it was a real possibility that Hazel wasn't going to make it out of the hospital that week.  I was almost certain we were going to have to say goodbye soon.  And let me tell you, I do not wish that thought process on anyone.  It is debilitating.  And 7 families are going through that goodbye every single day!  SEVEN FAMILIES!

     Thankfully, we were able to manage all of Hazel's symptoms with oral medications and our supplemental/natural care, that we were able to go home by that weekend.  Dr. Marachelian wanted us to come see her on Monday, so we could discuss a plan for Hazel.  She wanted us to have very real conversations over the weekend though, to make sure we were on the same page, regarding Hazel's future care.

     When we met together on the 12th, we had all come to the same decision that we were not ready to stop trying to fight this thing.  We all believed that there could still be something out there that could work for Hazel.  However, we also got news that the cancer has begun to spread to Hazel's bone marrow.  It is only affected at 5%, so it is not much, but since she has not had bone marrow involvement at all, for the past five years, this was very disappointing news.  This cancer is moving fast,  getting stronger and getting smarter.  And research is just not happening fast enough!  It has become very clear, that a cure may not happen for Hazel.  Researchers and doctors are working so hard to find the most targeted, individualized therapies, but the money, the awareness and the governmental support is just not there!  I am so glad we are fighting to keep our kids safe at school, but I wish people would fight just as hard to keep our kids safe from cancer.  IT IS KILLING OUR CHILDREN AT A MUCH HIGHER RATE!

     But even with this disappointing news, and knowing the reality of this beast, we still agreed we were not throwing in the towel and were going to hang onto hope.  So we began to go through all of the possible treatments we could try.  We decided that right now, Hazel's body is just not well enough to do high dose chemo treatments, however, we also felt like her body was strong enough to handle some chemo.  So the ICE protocol that we were thinking of doing before was out.  There were clinical trials that consisted of high dose chemo, paired with a study drug, so those were out.  There were clinical trial that consisted of only a study drug.  But we didn't feel like that would be enough at this point.  If there was nothing else to help Hazel, we could try those in a last-ditch effort, but we weren't there yet.  So that left us with clinical trials that had a lower dose chemo, paired with a study drug.

     So we all came down to one decision.  A trial that included and oral chemo called Ironetecan, paired with a new drug that targets something called the N-MYC amplification.  The N-MYC gene is responsible for replicating cells, and when a child with Neuroblastoma has an amplification of that gene, their cells get replicated faster than the average person.  As you can imagine, that is not good when those cells are cancer cells.  We have known that Hazel has had this amplification since diagnosis, but it wasn't until recently that there have been targeted therapies for this.

     We had to run a few more tests, and sign a bunch of papers, before starting the trial, but Hazel was able to begin on March 16th.  The good thing, is that she was able to do all of the treatment from home.  The tough thing, was that it was all oral. The chemo was a concoction of liquid, in a syringe, and the study drug was 5 different pills!  But she did it all like a champ, and finished this past Tuesday.  We aren't confident that this is the key, but we are hopeful that it could work for Hazel.  But what we really need is a miracle!  I know that God is capable, so I am asking, in faith, for you all to pray for nothing less!  The plan is to re-scan on Monday, April 2nd.  The day after Easter.  Wouldn't it be amazing to witness a miracle after celebrating the miracle of Jesus' resurrection?!

     This treatment is not expected to drop Hazel's counts as much, and the side effects should be minimal.  However, over the course of the past couple of weeks, Hazel still has not been feeling well.  Her pain keeps coming and going, she is very run down, she has not been up to eating much, and has had a cough that hasn't quit.  As you may remember, Hazel's left lung has been struggling with fluid build up because of the placement of her tumors, and now, some of the lymph nodes that have appeared are also around this lung, so we have been very careful about keeping a watch on this.

     Over this past weekend, Hazel's cough seemed to get a little worse, and she spiked a fever.  I was not in town, so my mother (an angel on earth), took Hazel to the emergency room.  She was admitted to CHLA at 4:30AM Sunday morning, and it has been discovered that her cough has now turned to pneumonia. Pneumonia in cancer kids can be very dangerous, especially when immunocompromised.  However, Hazel's immune system is actually in high gear!  Her white blood cell count has not really been affected by the chemo, and they are actually in overdrive, which means her body is trying to naturally fight this thing.  So still a precarious situation, it is comforting to know that her body is fighting with us.

     We have no idea how long we will be inpatient, or how long it will take to treat this pneumonia, or what it will entail, so please pray for an easy recovery.  She is exhausted and doesn't feel very well at all, so I am hoping that what we are doing will work fast.  We may end up moving the scans up to this week, but I won't know that until I speak to Hazel's oncologist.  If the scans reveal that the tumors are not responding, we have a few other things we can try.  But if her cancer begins growing out of control, our options will begin to dwindle.  Please keep praying! Pray that despite our realities, we can see and find the hope.

Hazel Today (she currently
needs oxygen support for
the pneumonia)

21 comments:

  1. Your beautiful baby girl, I pray she gets stronger and responds to the treatment. As a cancer mom, I know your pain and feeling of helplessness. Hugs to all of you.

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  2. I know Hazel is going to get well. When she does and is strong enough I would love to come and work with her on her school work. I taught for Simi for 30 years, and I taught primary. I loved my job and I would love to help Hazel any way I can. My time of course is just love and anything I can do to help. You just please keep me posted. My charge is just her smile . I know who Great Grandma and it would be my joy, and pleasure to do whatever I can. Not to mention I have beat this awful cancer three times. So let me help, no charge just love.

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  3. Praying for a miracle RIGHT NOW.

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  4. On my knees praying for your precious Hazel and your family. No child or parent should ever have to go through what you all are going through, Sending you many prays from Houston, TX,

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  5. Praying big prayers for you sweetheart!

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  6. Sweet hazel I don’t know you but I’m am standing in faith with precious gift of God. God is able to do exceedingly abundantly above all we ask! I pray wisdom for your parents and the doctors! You are so loved little one. You will do even greater things! So much love to your family.

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  7. Praying in confidence that God will deliver the miracle we all are petitioning for! He is able and together we are storming the gates of Heaven! Thank You Lord for hearing our pleas - in Jesus name Amen!

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  8. Praying for God's healing on this precious baby girl !!

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  9. I am praying for God to grant you a miracle and that you and your family feel his love and hold onto faith as you continue in this fight.

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  10. Praying so hard right now for your beautiful girl, I’ve shared her story with so many friends to have them pray for her also. Sweet Hazel you are so loved!!

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  11. Praying through day and night for Hazel you little precious angel to win this fight and keep strong ,as well as for the whole family love and hugs .My heart misses a beat when i see your posts with news like this ,and pray next time it is good news and the ladder to recovery !!!

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  12. I'm so sorry that Hazel is in the hospital with pneumonia and hope she feels better soon!*hugs* I really hope that the new chemo and study drug protocol will shrink Hazel's tumors!*hugs*

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  13. I'm so sorry she will be at peace xo ♡

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  14. Praying so much for Hazel, and you all. May the Love of God fill your hearts with peace, and allow all of you to feel how He is with you now more than ever. I am so sorry for what all you are going through. I am so sorry for failing so much to these beautiful angels. May you have comfort in the Love of God, and the Love that all of you share, that is something that nothing can brake, and will be for ever.

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  15. Deepest Condolences ��

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  16. I am so sorry that Hazel had to leave you so suddenly. She fought hard, and now she gets to rest. My heart is with you, Aaron and the children. May you find comfort in your grief. May you see a hundred signs a day that she is still with you. xoxo

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  17. Fly high, darling girl.

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