Wednesday, January 10, 2018

Progress

     The word progress has come to mean so many things to me over the past several months.  Before cancer, progress always pointed to something positive; something good.  But now, progress can sometimes be the last thing I want to hear.

     Since my last post here, a lot has happened.  In November, Hazel was hospitalized with extreme amounts of pain, and several difficult side effects to what we determined to be a tumor flare.  We were all just trying to hold on to get Hazel on a new clinical trial that we all believed had a very good chance at curing our little girl.  

     Between our discharge, and the day before Christmas Eve, we thought we had it.  Hazel was making such good progress, that I was even beginning to be filled with a hope once lost.  I mean, she was in school everyday, eating like a champ, bursting with energy and gaining strength like you wouldn't believe (she crossed the monkey bars on her own for the first time!).  It was a glorious month!

     
     Then on Christmas Eve, Hazel's back pain had returned as if someone just flipped a switch from "OFF" to "ON".  And it progressed so quickly.  I was terrified.  But in true Hazelnut fashion, she was determined to be home for Christmas.  Like any 6 year old, she had been counting down the days, not just for opening presents on Christmas morning, but to a day filled with spending time with family, since she missed out on so much the month before while being in the hospital.  I spoke to her doctor, who realized how important this holiday could be for our family, and she said that we could give her some pain medication to hold her over until morning, but to come in as soon as we were done.  She also said that if the pain got worse, or she had any other symptoms, to come in immediately.  

     So I said to Hazel, "Honey, I will do whatever you want.  If you want to stay here, and fight through the pain, I will go wherever I need to, to get you the pain medication you need.  But the second you want to go to the hospital, you tell me."  So she fought through the pain, barely being able to open her presents, but happy to visit with everyone.  But by 3:00pm Christmas Day, we both agreed that it was time to go to the hospital.

     Considering her experience in November, her doctors opted for a direct admission this time, rather than our usual ER visit, then admission.  Continuous IV pain medication was started immediately, because at that point, my poor sweet girl could scarcely even move.  Scans that were meant to be done after New Years, were pushed up, and even more intricate ones were ordered.

     As each day in that first week here passed, I felt like I was living my very own version of the movie "Groundhog Day".  It was like we were re-living the same hospital stay we had in November.  Hazel experienced the same symptoms, and the same protocol was initiated.  Then, other complications began to come up, just as they had in November, and I was scared senseless that we were going to experience the same hell that we did then. Thankfully, everyone was aware of what happened last time, and we all worked very hard to try and keep ahead of everything.

     It took quite a few days to get a handle on managing Hazel's pain, but we certainly got to it more quickly than last time, so I was thankful.  But the same fears I had two months ago, were eating away at me once again.  I thought for sure, this time, the pain meant Hazel's cancer had progressed.  

     First, her CT results came in, and my fears were realized when the doctors told us that there has been progression in her tumors.  But he tried to assure us, that so far, it had appeared to be small, and slow growing progression.  But it looked as though this new progression was now threatening Hazel's spinal canal at an alarming rate, and they were concerned that if we did not stop it immediately, that the tumor growth could cause permanent neurological damage.  So an MRI was ordered for that very night.

     The MRI came back with a very clear picture of progress of her tumors, and the one near her spine was now wrapping itself around the spine, trying desperately to break in, and even compressing several nerves between her T-11 and T-12 vertebrates.  Thankfully, however, it has not yet invaded the canal (funny how bad news can become good news in this messed up world of childhood cancer), and she is currently not in danger of permanent damage.  This gave us a chance to make a treatment plan, as it wasn't as emergent as we thought it would be.

     She also had the painful bone marrow biopsies performed as well, which thankfully came back clear.  But this left her hips sore for many days.

     Hazel's PET/CT came back, affirming the progression, and also lighting up very bright in her tumors, indicating that it is still very active disease.  It also showed that because of their placement near her diaphragm and lungs, she was developing a pleural effusion (fluid build up around the lungs), just as she did in November.  

     Gosh, these tumors are greedy little suckers, aren't they?!

     We tried to stay ahead of it, but it progressed rapidly, and before we knew it, her entire left lung was affected, and she needed to have around the clock oxygen for the better part of a day.  So, instead of just watching it, and draining it if need be, our little Hazelnut had to have a chest tube placed, in addition to everything else she was going through. To date, it has drained nearly 700ml of fluid!
  
     After much discussion and deliberation, Hazel's oncologist and we decided on a treatment plan.  Radiation was to be started as soon as possible, to try and stop the tumor around her spine in its tracks, and chemo was to be started immediately.  Which chemo, though was the question.  We had two choices, one was to go back to what worked for her last year (two types of chemo + the ALK inhibitor) and would be tough but tolerable on her body, or a protocol called ICE.  ICE consists of three different chemotherapies (Ifosfamide, Carboplatin and Etoposide), which are all very strong and very brutal drugs.  They are given inpatient, and you usually stay until you recover, because they need to watch your side effects very closely.  I have known a few children who have done the protocol, and it was no picnic, so the thought of doing this scared me.  But I also want this cancer gone, once and for all, and maybe that's what it would take.

     I wish the answer was easy.  I wish, like many well-meaning people have messaged me, that cannabis, ketogenic diets, carrot juice, vitamin therapy, essential oils, etc.  would be the cure to my daughter's cancer.  Believe me, we have tried these things, with the hope for a cure!  But her cancer keeps coming back.  It keeps getting smarter, and stronger, and it has figured out ways to get around every single thing we have thrown at it.  The possibility that this beast can take our daughter is becoming more real with every second that passes, and it rips my heart out that we haven't found the thing to save her yet.

     However, even with the knowledge that these protocols may not be the answer for Hazel, we do have hope that they can give us more time to try and find it.  Her doctor and I both believe that the right protocol for now, is what got Hazel to remission last year.  We both felt that if we tried the ICE protocol, and it hit Hazel to hard and caused irreversible side effects, it would not be fair to Hazel and we would never forgive ourselves for not trying the "easier" protocol first.  So she started that regimen last week, and completed the 5 day course already.  She seems to be tolerating pretty well for now, but her counts have dropped to nothing, and she has already needed blood and platelet transfusions.  Her platelet level got so low, that she started getting a bloody nose yesterday, and we could not stop it for well over an hour.  So much blood ended up in her stomach, that she coughed up clots three separate times.

     Hazel also completes her 5 day course of radiation tomorrow.  The radiologist has said that he has already seen a decrease in the swelling of her tumors, which has been reaffirmed to us these past couple of days, as Hazel's pain seems to be getting better.  So much better, in fact, that she is off the continuous pain medications and on an oral nerve pain medication only.  She felt good enough to even have an impromptu dance party with her nurses, complete with a disco ball. 

     Despite the struggles with my faith lately, I can only believe that it has been God and your prayers that has sustained our family. My husband Aaron has had to act like a single Dad since Christmas, taking care of four children, a home and a job.  He even has made time to come and visit us when he can.  My other children are worried for their sister, and miss us terribly.  They now have to go back to school this week, as if life were normal.  Yet, somehow, they keep going. We have had to ask so much of Hazel these past weeks, and it has been hard on her.  But God continues to lift her up and helping her push through. On the days where she has cried out, "I can't do this!  I wish I never had cancer! This is the worst thing to ever happen to me!", she somehow still manages to gather enough courage to do what needs to be done.  Logically, a six year old girl would not usually be able to face these kinds of things.  Most of the time, they cannot even face the monsters that they believe are hiding under their beds.  Yet Hazel fights this very real, and very scary monster every single day, and it is all she has ever known.  So, for me, that only points to a divine strength that must have been gifted to her.  

     Yes, I still struggle with the thoughts of "How could God allow something like this?" or "Why would God let these children suffer?".  But I also know, that cancer is not FROM HIM.  It is a product of living in a broken world.  But it is hard still to understand.  Bitterness and anger are comfortable when walking this path, and I am trying so desperately to see the light.  So when I see Hazel, and my four other children, being so brave and strong through all of this, it helps me to see that light, even if only for a moment.

     If you are still with me here, at the end of this lengthy post, thank you.  I ask you now to keep praying.  Pray for the good kind of progress.  We want to see something finally nail this thing, and we want to go home.  







 

47 comments:

  1. thank you for taking the time to write your thoughts...and for letting us know how things are going. You are ALL constantly on our hearts and in our prayers.

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  2. I'm so sorry ánd I'm with u ..little Hazel Is in my prays..I have two little girls ánd one of them Is 6 years old like Hazel ánd I every time I read your blog I Pray for your beautiful girl ánd for a soon recovery ...I Saw the cáncer very close bcoz of my mom and her sister and I understand every Word you Say bcoz cáncer just suck..and more if he doesnt wanna go from a little girl..send you a big hug...stay strong and don't give up at the cáncer bcoz you both are stronger..

    Please give a little Kiss to Hazel from me and my girls Lizbeth and Zury ..they send her grettins..��������

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  3. My mind really cannot comprehend how you ALL cope; little Hazelnut, you and her Daddy, and her siblings. You are all remarkably strong and resilient. I cry reading what that little angel is going through and feel helpless that all I can send is hope and love. She is so pretty and so small and SO brave. As a Mum and Grandmother I know that you are living the nightmare that always hides at the back of our minds...what if... I live in the UK but wish I lived close and could help with the children, wash, shop and cook because on top of all your worries you also have the rest of the family to worry about. May your shoulders stay strong. Please give little hazelnut a kiss from me. X

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  4. Thank you for sharing your thoughts and fears with us. I cannot imagine what you are going through. Hazel is the bravest little warrior I know. Her courage & strength is an inspiration to me! She has endure so much yet a always has a smile. Your family are in my thoughts and prayers. Thank you for sharing your beautiful Hazel with us!

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  5. Thank you Lauren for taking the time and the strength to go through all these events again. I think about you each and every day and I will keep doing it, now with a specific wish for good progress for Hazel's and your and your family's sake. Warm regards from Luxembourg.

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  6. Dear Lauren: we, as well as many many people are praying at all times for Hazel , you, and your family. Oh, how I wish there would be a solution now for Hazel and to all those beautiful children! But you are right, the real strength comes from God, and only Him is capable to lift us up when we can't do more. Thank you that in the middle of this painful days you have taken the time to share with us something so intimate and important, with so much courage and love. Please know God is with you all always. Hazel, and your family are so loved! May God Bless you all.

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  7. Dear Lauren, I have discovered the world of childhood cancer a few years back with your blog and Hazel's story, which I have been following ever since. As a mother of 3 girls, I cannot tell you how much I feel for you and your brave and beautiful little girl. Childhood cancer is a monstrosity that needs to become a number one health priority in terms of research and treatment, and I can tell you that awareness is rising everywhere in the world. I am French and live in Paris, France, and I have been raising funds (thanks to you!) for a non-profit organization called "Imagine for Margo" which has achieved outstanding results and hopefully will continue to do so for the years to come. All parents of the world should unite to say to our respective governments, whichever they may be, that we will no longer seat and watch our kids die helplessly and that we demand, as tax payers, that our tax money be allocated to research and specific treatments for childhood cancer. You are making a difference Lauren, not just around you, rest assured of that, and so is Hazel. Your strength, courage and dignity are an inspiration to many. Do not ever think of yourself as not up to the task - you are moving mountains. I hope with all my heart that Hazel wins this fight - she deserves it so much. May the Force, and the Light, be with her and with you always. Magali

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  8. Stay strong and keep the faith my prayers are with you all ❤️

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  9. Continued prayers for your beautiful little girl! She is a fighter for sure. We to understand this journey and all the feelings that come and the whys ,hows, whats that constantly are there while trying to stand on Gods Word. May not respond to every post because sometimes words just dont come but know you all are in our prayers

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  10. Thank you for updating her "progress", and I pray that there is a forward and positive movement for you all.
    I pray for this to be the solution and the thing that will bring Hazel to health again. I pray that you have the strength to continue holding her up when it gets too difficult for her little self to do on her own. I pray for your husband and children at home who wait for you. Most of all, I ask God to bless Hazel with comfort and healing and to guide her caregivers and doctors, and the scientists who can take away this painful disease.

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  11. Thank you for sharing your mama's heart. My heart aches for you and all you are going through. I can't even begin to imagine. May God continue to strengthen you, Hazel and your family. May His hand of healing be upon Hazel. May He give wisdom and knowledge to you all in the decisions that you have to make so quickly. I speak, total healing, comfort, peace and restoration over you all in Jesus name. Thank you Father for carrying this family and holding them close to your heart. Thank you that your word does not return void. Thank you for hearing and answering our prayers. In Jesus name. Amen.

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  12. Prayers for all your of your family. What a strong husband you have. I’m so very sorry to hear of Hazels recent battles. I am
    Praying for her healing and for strength to get thru this. Lauren, know that you can do this, and that the lord is on your side. The devil and all his torment is up against an awesome god. Bless you all. ❤️

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  13. Praying for sweet Hazel and your family.

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  14. My prayers are with you and your family. I never, ever considered the pain, agony, fear, anxiety that childhood cancer brings to a family until it hit our own. Keep fighting Hazel! Keep fighting momma! I know the days are hard and you are fearful. How can it be that ICE, 5FU, cisplatin, vincristine, PET scans, radiation, ports are all daily words now? I know this fight is hard and you will keep fighting. God bless you all. God bless your family.

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  15. Reading your post takes me back to my own experiences with childhood cancer. I recently lost my daughter to this monster and I know the struggle to keep your faith and optimism all too well. From experience I can tell you to keep holding onto hope and keep trusting in Him, like you said, the courage and strength Hazel shows comes from above. My daughter fought with the same grace and God given strength that Hazel fights with. My heart and prayers are with you and your precious little warrior ❤����

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    1. I am so sorry for the loss of your daughter.....

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  16. Stay strong its a very "raw" journey full of ups and downs, treasure those moments, make beautiful memories and always hope for the best, I had a little girl she got neuroblastoma at the age of 5 she was such a fighter. Praying for your family, be kind to yourself.

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  17. Thank younfor updating us Lauren. My heart is with you guys right now. Sending so much love and thinking positive thoughts of healing ❤️ Kelly holguin

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  18. Thank younfor updating us Lauren. My heart is with you guys right now. Sending so much love and thinking positive thoughts of healing ❤️ Kelly holguin

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  19. Thank you for taking the time to keep us updated on Hazel's journey, I hope she gets some relief after this round, and that you all get some much needed rest.

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  20. I am a friend of Laura's. We have known each other for 30 years.I pray for little Hazel daily and I thank you for the update. I am so sorry to hear you all are suffering- especially your sweet little girl. There are no words. This verse helps me cope at times, when I feel fearful- today I give it to you.
    This is my command; be strong and courageous! Do not be afraid; Do not be discouraged. For the Lord your God is with
    you wherever you go. Joshua 1:9



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    1. Dear Lauren , I can not even comprehend the daily progression of what happens in sweet Hazels Daily life as well as you the kids and Aaron.
      Our prayers, and our thoughts and our constant wishes are with you ALL.
      Not just daily, not hourly but moment to moment.
      Hazel is a remarkable Young little girl Who absolutely does not deserve what she goes through daily and yet her strength just keeps going on, It is truly a strange and positivity beyond my understanding and truly is a gift given to her.
      You to Lauren have this gift as you to as well as Aaron the kids and the family travel this journey you all are given this gift.
      Thank you so much for sharing your journey with us letting us know how Hazel is doing as well as you Aaron in the kids and the family. It cannot be easy finding the words that set your feelings that fit your journey of your daily life. And yet you still through everything have time to update us.
      I am completely in awe of you Lauren... of your strength... of your determination, and of your progression throughout my time of knowing you and watching you go through this horrific journey with your family...
      Please give Hazel a gentle kiss and hug for me, please tell her I love her .
      My prayers, my family's prayers are continuous and do not stop love to you all.
      Wendy & Barry King
      Xoxo

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  21. I'm sorry you and Hazel are going through so much!*hugs* Sending healing and love! I hope chemo and radiation stop her tumors in their tracks and shrink them! Thank you for taking the time to update!*hugs*

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  22. You are always in my heart and in my prayers, sending love and hugs for you, for Hazel and your family.

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  23. I first off have to say I am just so blown away at how strong Hazel is. To tough it out on Christmas like that when she was in such inummerable pain? She is so brave and strong. I so truly hope, pray and wish her fight and strength saves her in the end and she beats this disease handily. Secondly, as someone who considers themselves agnostic, but deeply respectful of other people's faith and religion, and I heartedly concur with you that this cancer is not from God. I still struggle with what I believe but I cannot fathom a world in which God would harm innocent children like that with such a horrid disease. Lastly, I may not be religious myself but my grandmother was deeply so. She's gone to God now herself and my family quite honestly believes she's our guardian angel. We send her prayers when we need them. I've asked her repeatedly to look out for Hazel and keep her safe here on earth. I'll continue to do so.

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  24. Is there a place that a gift for Hazel could be sent? Art supplies, sticker books, that type of thing. I am in California and would be happy to send to her if that is allowed. Is she at Children's Hospital in Los Angeles - would they receive the gift and give it to her? Please let me know - Prayers for you all.

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  25. I have been following Hazel's journey since I first saw the "send pizza" post. I have rejoiced with you when she went into remission and cried when she relapsed. Most of all I have prayed for you, Hazel and your family. My heart breaks for you reading this update. I have walked that dark terrifying path also...so terrified for my daughter and so thankful God understands a mothers prayers when all she can utter is "Please God". It is easy to walk with bitterness and anger and so hard to hang onto faith during these dark times. My continued prayers are with you, Hazel and your family.

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  26. My heart breaks for this long and ardous journey she is having to endure. Our prayers are with her every day.

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  27. I have been following your family and praying everyday since I first saw the story of her in the hospital window, long before I lost my own daughter and grandaughter. I stand with you and understand your daily struggle in faith and doubt and believing and then doubting again. It is the hardest thing ever to see your children hurting. keep breathing and doing what you know to do...we will all hold your family up.

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  28. Loving prayers are always coming to Hazel and your family....I ask Gods blessings for you all

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  29. Your ability to articulate how you feel and what Hazel is going through makes it all real to those of us that read your blogs. It is a gift that makes you all relate-able and therefore so easy to be with through these trying chapters of life. You have any army of people who care and who are praying for strength and good progress.

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  30. Praying everyday for your sweet girl!! Thank you for sharing her story with us and allowing us to come along side the Hammersley Family during this difficult time.

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  31. I can begin to know what your family has endured. It is so kind and brave of you to write this blog and Hazel is the sweetest and bravest little girl. My prayers are on-going for you. So many of us are fighting for a real live princess named Hazel hugs for you sweetie.

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  32. Praying for Hazel to be cancer free and for victory to be hers. Praying for you and your family to have peace, comfort and rest in lieu of the current situation.

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  33. Praying for Hazel to be cancer free and for victory to be hers. Praying for you and your family to have peace, comfort and rest in lieu of the current situation.

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  34. Praying every day for you sweet Hazel!
    Praying for that “good progress” all the way
    until the day where you are completely healed!! 🙏🏻❤️ Keep strong Hammersley family!!!

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  35. Continued prayers for Hazel and all of you. I'm sharing your post with my team of prayer warriors, too. In the mighty name of Jesus, I speak healing over Hazelnut and tell that cancer to be GONE once and for all, never to return. Amen. There is a Christian song entitled, Tell the Devil, NO, not today, not ever again! I will be singing that for Hazel.

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  36. I will continue praying for your strength and Hazel's. You are an amazing family.

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  37. Dearest Lauren and Aaron, I am so sorry for your family's continued battle. Easier said than done, but when you can wrap your mind and heart around it, please continue to focus on what you wrote Lauren--cancer stems from our broken world. And regardless of the outcome, satan might be having a field day, but Christ has already won the battle and satan cannot take that from you and your family. I can only imagine (and barely) what your family is going through. I am so grateful Lauren, that you have found the patience to thoroughly keep us all current with Hazel's health and your transparency of where your faith is being shaken, and the needs for your family. Hazel isn't the only one gifted great inner strength--you all have been. Press in to our Father, and be reminded that if you can't even muster up the words to pray, each tear that rolls down your face is a liquid prayer. The Lord knows your heart and He meets us where we're at. He is with your family and His grace and mercy renews each day. My continued prayers for you, Aaron and Lauren, as you continue to lead your family. May the Lord's will be done!

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  38. OMG you are the strongest Mommy I have ever seen I don't think I'd be able to go through the same things and be as strong as you you are so strong it's amazing I could barely even read through your letter I had to stop and I told myself no I'm just going to keep going on because I was too afraid to hear the worst but I'm glad I kept reading and held on like all of you guys are doing and your family too. Hazel is such a strong little girl herself it's amazing with what she's going through. God is with her he's going through this with her he's there with her through it all and there with you. God will never allow these things to happen it's mostly the devil, if the Earth was a perfect place no one would need God and nobody would need prayer. We are all here to pray for you I will continue to pray as I always have and we are the ones that saw you in the hospital and said we were praying for you I'm so glad we got to meet you that one day hang in there mama you're an awesome woman to have wrote all of that and took the time to do that, it was all very well said.

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  39. Lauren, thank you so very much for taking the time to post an update on Hazel I think of Hazel often and pray for her for remission/cure. I am in remission from chronic leukemia/lymphoma. I too went through rounds of FCR followed by rounds of just Rituxin alone. I also had a bone marrow test without anesthesia. It is hell. Yet, I am an adult and can rationalize that all this is keeping me alive. I don't know where Hazel gets her strength from to fight, but I do know that keeping a positive attitude in the face of cancer helps the fight. Hopefully, new treatments will come soon enough to cure Hazel or at least keep her in remission until one comes along for cure. I send big hugs, prayers, and strength to you, Hazel, and your family. Keep up the good fight!

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