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.



42 comments:

  1. Praying for Hazel from Eastern Ontario Canada. Hazel you and your family are brave Warriors.In your weakness Jesus is your strength

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  2. Blessing to you all....�� I just can not find the proper words...xo. Not sure why my hearts at ?? But sending hearts

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  3. Sending you so much love Lauren. I hope so much that everything will be well soon. I will be thinking of you all as you go through this hospital stay and the scans.

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  4. Prayers for Hazel as well as you. Your children at home also. Comfort and Peace during all of your trials. Hazel will beat this beast. God's Blessings.

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  5. Praying for your little girl from Western, Massachusetts. Never let anyone make you second guess yourselves. You are and always will do the very best for your child. You know what they say about nuts - some are tough to crack and your little Hazelnut is one of them! Thoughts and many prayers.

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  6. Praying for all of you. My heart goes out to you.

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  7. Sending love and prayers from PNG!!

    Bonnie. :)!!

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  8. My prayers are going out to you, and of course little Hazel and your other kids....I know they need their Mom too. God has given you a special child, and a special family. God bless you for taking time from your busy day to update us on your precious Hazel.

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  9. Love and prayers for you all. No one knows her and loves her more than you, you ARE doing the right thing, and it doesn't need to be explained to anybody, especially strangers!

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  10. You never need to explain yourself to people you don't know. You are her mother and are doing everything in your power to save her. We will be praying for all of you guys.

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  11. Please do not listen to those that criticize you. You are doing everything to help her and get rid of this cancer. God bless you all

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  12. Prayers and love to you and all your family.

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  13. Oh you guys...I know you don't know me and I know how callous and ridiculous it would sound to say I know what you're going through...I don't as I have two healthy kids. But I cry with you, I follow every step, I'm grateful for the updates because I'm so emotionally invested in your family that I feel I should be there. I've never met you and I love you. Your kids - all of them - your husband, your marriage, your faith, your strength...I'm in awe of all of you. Not just Hazel although she amazes me. I hope you can find some comfort in knowing how deeply your story affects so many of us. I don't have the same faith you do...I’m not a pray-er. But I pray for all of you daily with a heart full of love and hope. She HAS to get better because I can't handle the alternative and I'm not her precious mommy. Never, ever doubt the amazing woman you are. I can only dream that I'd be half of what you are in your position. All my love, all my prayers, all heading your way.

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    1. So beautifully written. I feel the exact same way. I have been following little hazel for about 4 years now and it truly breaks my heart seeing what her and the family has to be put through because of this terrible and ruthless disease. In a couple months, it will be 4 years that my, now 5 year old daughter and myself lost my husband to this terrible cancer. I truly mourn and cry with your family. Always, always sending my positivity and love your way. Love you, little Hazelnut!

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    2. Hazel precious Angel warrior!!! I've watched your journey since your last journey!! It breaks our hearts to see you going through this nightmare once again!!! Prayering soooo hard for you!!!! Your beyond so strong!!! Lauren to you and your children at home who don't understand why you have to be gone.. there are no words to help, no words to express enough how sorry we are for your family's pain!!! 🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽 For all of you!!

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  14. Lauren and Hazelnut, God is surrounding you with love...you are survivors and we are with you.

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  15. Praying for this sweet girl and your entire family! Thank you so much for sharing your journey with us all, Hazel is blessed to have you and you are blessed to have her!

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  16. They have only just legalised cannabis oil in Australia but all the red tape involved in getting it prescribed by the doctor means the doctor can't be bothered filling in all the forms so people are still going underground to get it. Which you could send me a box lol (only joking it woudn't get throught customs). How do you use it? Is in a liquid form and you take it orally?

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  17. Praying that God will place a protective shield around you and your family while you walk through this very scary and trying ordeal. Am especially praying for Hazel's four siblings.

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  18. Prayers for your brave little warrior.

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  19. It is so hard to read these updates and think how unfair this is to Hazel and your family. I thank you for including us all on your very hard journey. Much love and thoughts to her and your family.

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  20. Jesus is your anchor who is holding onto you, especially when you can't hold onto him. Praying!

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  21. Love and constant prayers for you beautiful, brave, amazing Hazel. God comfort and strengthen this loving family.

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  22. Lots of prayers for your sweet little girl!!

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  23. Praying for sweet Hazel and your dear family! Knowing that only your family can make those difficult, gut wrenching and heart breaking decisions for Hazel, decisions I wish No parent had to ever even think about!! ������ God be with you!

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  24. You're an amazing mom!!! You're doing wonderfully supporting your sweet daughter and your family ❤

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  25. I am so sorry you are going through all this. Sending prayers to Hazel and the rest of the family and to the Doctor's and Nurse's who take care of her.

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  26. Such a difficult journey.... I know. I watched my niece go through this 20 + years ago. She's in her early 30s now, and is doing well. She now works at Sick Kids supporting children and their families as they do the battle. I'll say prayers.

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  27. I grieve that you have to put up with busybodies who feel they have to question your decisions. You have enough to deal with without that! I support you in your treatments for Hazel, knowing that you are directed by the Holy Spirit every step of the way!

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  28. Love and prayers for you Princess Hazel. I hope you're starting to feel better really soon. Hugs from Australia xxx

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  29. Lauren, you are a very strong and loving mom. Mom guilt is so hard, but you have a great support system and you and your husband seem to be a wonderful team. I don't know how you handle it all, but you handle it with grace and strength. I hope you and Hazel can get some good rest over the next day and praying the tests come back good!

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  30. Will be there this morning, Charlie has to do another blood draw - not sure what to expect, or why. I will see if I can give platelets if they can fit me in <3 Can I bring you anything? sending love and hugs your way <3

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  31. We are praying fervently for you guys. That's is so terrifying. You are amazing Lauren and you are so strong. We pray for wisdom for all of you and the physicians and staff caring for Hazel. As always, we are a call away. Sending hugs ❤️

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  32. Sending healing and positive thoughts for Hazel!*hugs* Sending love from Fredericton, New Brunswick, Canada! I hope that Hazel feels better soon! My heart breaks reading how awful she is feeling right now and all that she has gone through! You are a wonderful mother and you are doing everything you can to help Hazel! Please do not let anyone make you feel any differently! Western medicine has also helped Hazel and continues to help her.

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  33. many prayers for our sweetie what a trooper God bless prayers

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  34. prayers for Hazel and love to you and your family. May His peace and comfort strengthen and hold you every moment.

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  35. Praying for you guys so much! I remember being in a similar situation with Gia - twice actually. Puking and vomiting all over me and feelingvso utterly panicked and emotional over it all. As if we weren't already worried about her health. Sickness on top of sickness just left me drained and crying out to God for His grace to get her and is through. I know it must be so difficult with your other children having to walk this road too. Praying for supernatural grace overcthem as well - that they would be so covered and know God is with them and you and Hazel. We love you guys. Our CHLA families need to stick together. Xoxo
    Isaiah 43:2
    When you pass through the waters,
    I will be with you;
    and when you pass through the rivers,
    they will not sweep over you.
    When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze.

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