Monday, April 29, 2013

MIBG Results

**MIBG RESULTS ARE NEGATIVE!!! NO SIGNS OF SPREADING!!!**

     We are so overwhelmed by these results and know that God has His hand in all of this.  We thank you for your prayers and ask you to keep on praying for our little Hazelnut as she goes through the fight of her life.  The doctors may even let us return home tonight!  I can't wait to go home, but in all honesty I am absolutely terrified.  So please pray that God will give me His supernatural strength and resolve to get through each day and that He may protect her fragile immune system as we venture out into the germ infested world.  Here we go...

Sunday, April 28, 2013

Siblings

**FINAL RESULTS FOR THE MIBG SCAN SHOULD COME MONDAY**      

     It's 4:00 in the morning, and as I lie awake, I can't help but think about how all of this is going to affect Hazel's 3 siblings; Micah (6), Elizabeth (4) and Jonah (6months).  They understand that Hazel is sick and needs to be in the hospital, but we have not had a full discussion about her diagnosis yet.  This is going to happen on Monday.  Please keep my children in your prayers that day, as I'm sure all of this will be so terribly difficult to comprehend. 
     My thoughts are full of the questions, fears and feelings they will have, and how Aaron and I will face them.  I ask myself: Will they feel neglected?  How can I help them return to a form of normalcy? How do I ease their fears and anxieties about their sister's health? Do I cut my hair so that they think it's normal for girls to have little or no hair? How do I keep the germs at bay?  Can I ever achieve a balance with 4 kids while Hazel is being treated?  Do they continue to share a room?  How will I keep the toys clean?  Will the kids adjust to the new routines?  And the list goes on and on.
     Most importantly though, I desire that God will reveal Himself to them in a way that they have never experienced before.  I want them to know that they can put their trust in and cast their fears upon Him.  I want them to feel His warm embrace. I want their reality to reflect Psalm 36:7-9: "How precious is your lovingkidness, O God! And the children of men take refuge in the shadow of your wings.  They drink their fill of the abundance of Your house; and You give them to drink of the river of Your delights.  For with You is the fountain of life; in Your light we see light"  Please, remember my children over these next months, and continue to keep them in your prayers and thoughts as well.

Saturday, April 27, 2013

Ways To Help

     First, let me start by saying how absolutely humbled Aaron and I are by the outpouring of love and support we have received over these last days.  We are so blessed to have such an army behind us to fight this thing!  When Hazel is older, I cannot wait to tell her about all of you!
     That being said, I have had so many inquiries about how people can help, and I have a few things I can share with you.

  • I have added three links on the side of our blog:
    • Donate To Hazel's Fund- This link will take you to the wonderful Talbert Family Foundation.  They have so graciously offered to match the first $5000 dollars raised, and sends us weekly checks of any donations (100% goes directly to us!)  Any fundraising event that we set up can also coordinate with them!  
    • Meal Calendar- You can search for our name and enter our code 4293.  This will definitely be an ongoing need.
    • Donate Blood- Hazel, and all the children at Children's Hospital Los Angeles (CHLA), will be in need of blood and platelets.  You can make an appointment through contacting their blood bank.  Hazel's blood type is A+
  • Grocery gift cards
  • Gas Cards
  • Cash Donations
  • Playdates with Hazel's siblings
     Obviously, at this point, I will not know everything we will be in need of.  As soon as we begin to navigate through this journey, we will keep you updated on our needs.  But most importantly, continue to pray fervently!

Friday, April 26, 2013

My Little Sunshine



     Yesterday was such a good day!  I really haven't seen my little sunshine in about a week, but today she lit up this whole room!  God truly refreshed my soul.  He promises in Jeremiah 31:25 "For I satisfy the weary ones, and refresh everyone who languishes" And last night, she just melted my heart: While she was receiving Chemo, she understood that she was getting "medicine" to make her feel better.  About a half hour into it, she turned to Aaron and said "Thank you for my medicine Dada".  I absolutely lost it (with joyful tears)!  Bless her sweet little heart!
   
     Here are a few videos of the moments from yesterday:


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   Today, we have the MIBG scan at 9:00 or 9:30 AM (hopefully).  Please pray like crazy for these results!!!

Wednesday, April 24, 2013

Chemotherapy

   They are starting Hazel's first round (it takes an hour each day for 5 days) of Chemo tonight at 10:30pm.  It's all moving so quickly and is a little overwhelming, but I am thankful that we are going to start kicking this cancer's butt immediately!  Please pray for tonight and these next few days!!

Pray for us to remember His Promises: ISAIAH 58:8  "Then your light will break out like the dawn, and your recovery will speedily spring forth; and your righteousness will go before you; the glory of God will be your rear guard."

A Diagnosis

TWO BIG PRAISES TODAY!!!
-Thank you all for praying specifically for Hazel's fever.  The very next morning her fever broke and has not returned!!!!!!!!!  Praise be to God!
-We received the results from the bone marrow biopsy: NEGATIVE!!!!!!  It, so far, has not spread to the bone marrow!!!!!!  The doctor told us that when we have the MIBG scan on Friday, these results can give us some hope that nothing will show up on her bones!  Please pray that the scan can confirm!

    We absolutely needed this news today because yesterday was one of the hardest days of my life.  This was the day we got our full diagnosis.  First let me say, God knew that this moment would be hard for us, and He orchestrated a support system for us to be there: my parents and the pastor of our church Todd Nighswonger.  I could not have gotten through yesterday without their support, so thank you...
     So, the official diagnosis is High-Risk, Stage 3 Neuroblastoma.  It will take at least 18 months of treatment, plus surgery.  It breaks my heart even typing it now.  But from what the doctors told me, most cases they see here are almost always either Stage 3 or Stage 4, because this STINKY tumor doesn't show symptoms right away.  We can take encouragement in the fact that they do deal with these all of the time, so they know what they are doing.  And this specific type of cancer generally responds to treatment very well.  They also told us several things about the tumor itself.  First, it appears so far that the tumor has not spread to the surrounding organs, but is just pushing up against everything; which explains why Hazel is uncomfortable and has very little appetite.  But we won't know about spread for sure until after the scan on Friday, so continue to pray for that scan specifically!
    The doctors began to take us through our treatment schedule and began to explain how our life will look for the next 18 months.  Essentially, the treatment will be broken down into 3 phases: 1) Induction 2)Consolidation and 3)Immunotherapy.  Each stage will last about six months.  In the induction phase, Hazel will receive 3 different types of Chemotherapy; A, B & C.  Each round of Chemo will be given to her over the course of several days, and 3 weeks later (unless her blood levels show she's not ready) will receive the next round.  The schedule will look like this: A, A, B, C, B, C.  Near the end of this phase, she will have surgery to remove the tumor, assuming it has responded well to therapy.  The doctor discussed all facets of this treatment, including tests that will be done, side effects, etc... The next phase, Consolidation, consists of more Chemotherapy and Radiation to attack any lingering cells.  Immunotherapy consists of being injected will her own healthy stem cells, which they will remove from her body during the Induction phase and prepare it for this phase.  The doctor then began to describe the side effects and long-term effects, and this was the moment when I could not take anymore.  I felt sick to my stomach and I remember something one of the residents told me: "This process will move very fast, and if you ever need to take a minute and slow down, just say something".  I mustered up enough strength to ask if this was information we needed to know at this moment, and he said no; so I asked to stop. I stepped into the bathroom, prepared to vomit, but fortunately, I did not.  Aaron was wanting to find out more, so he went to another to continue asking questions.
   Needless to say, this was devastating.  But God was good, because at the very moment I needed her, Hazel began coming out of her morphine trip (she was on a lot after her surgery) and began perking up.  She was smiling and talking, asking for crackers (first time in days!), and wanting to watch a movie. I just soaked this all up.  Aaron came back from talking with the doctor, and gave me some very encouraging information.  He had asked the doctor if there was any way to detect if this was the most aggressive kind of neuroblastoma, and the doctor said that there was, and he does not believe that is what we are dealing with with Hazel!  Also, he said that the cells are more immature, which respond very well to treatment.  Then Aaron asked if there are any statistics about how family life and support affect a child's success.  The doctor said, absolutely.  He believes we have the most ideal situation. He said we are the type of parents who are asking questions, advocating for our child, will be on top of treatments and will be responsible with her care.  In addition, we have such a strong support system, and that will definitely play a large role :)
    Although this day was extremely hard, I was constantly amazed by God showing us His hand in all of this.  Firstly, I am absolutely humbled by the outpouring of support we have received.  I have seen how quickly God has spread the word.  This blog is being read all around the world, and people are praying for her like crazy!  This is amazing!  Also, Aaron and I have looked back on our lives over the last few years and can now see how God has been preparing us for this moment.  He has put people in our lives that have been through what we are going through, and who have already proven to be such invaluable resources and supports.  He has given us some surprise financial assistance before we even knew we were going to need.  For example, we recently looked into buying a new home, but Aaron and I both felt led to re-finance instead.  Had we purchased, I don't now what kind of situation we would be in right now.  When re-financing our house, we were expecting a small amount of money back from escrow, but we ended up getting $5000 dollars!  Lastly, God continues to send information from families all around who's child was diagnosed with this same kind of cancer.  Each family so far have provided us stories of hope and survival, and I truly believe that it is no accident that God keeps covering Aaron and I with these.
    Again, I am so sorry for such a long post, but I know these first days are so full of information; but as time goes on, we will become experts and adapt to our new routine, and the posts will begin to reflect that.  Thank you all so much, from the bottom of our hearts, for being there with us is prayer and support!  We love you!

Tuesday, April 23, 2013

Aaron's co-worker Sebastien did this drawing that really brightened our day...

Monday, April 22, 2013

Another Update

     After the results of the bone scan, Hazel went to the OR for a biopsy of her tumor, a bone marrow extraction for testing and to place a PIC line (which is like a permanent IV where blood can be drawn, fluids can be given and where she can receive any kind of medication, including Chemotherapy).  The doctors told us that this could take several hours, so we were in for a wait.  She loved taking a ride on the bed down to the OR, and seemed to enjoy her sedation medication.  She got the hiccups, which made her giggle on her way to the OR.  To our surprise and relief, the procedures only took about two and a half hours!  The doctors and nurses all said that she did great, and would spend the rest of the evening, and much of tomorrow, resting and recovering.  As of right now (9:00pm), she has been awake for a total of 2 or 3 minutes, so she is a sleepy girl!  As far as the results from the biopsy and bone marrow tests, we should get those in a couple of days.  Please pray specifically for these results!
    We also just spoke to one of the doctors, who told us that Hazel will be getting an MIBG scan (we are not sure what the real name is yet) on Friday.  This scan is specifically for tissues dealing with neuroblastoma, and will show us if there is anywhere else in her body, including her bones once again, that neuroblastoma cells have grown.  Because the bone scan today was negative, we are hopeful that no cells will show up in the bone, but this scan will give us the most detailed look, thus far, of her body as a whole.  So please be praying for good results from this scan, which would be: confirmation that there are no neuroblastoma cells in her bone and that the rest of her body also looks clear.
    Lastly, Hazel has continued having a fever since Friday, sometimes reaching temperatures of 103 degrees.  Tylenol helps, but the doctors don not want to mask the fever, so she cannot be on a continuos regimen.  Please pray that God can help make her body strong to finally kick this fever and get some of her energy back!
     HEBREWS 4:16  Therefore let us draw near with confidence to the throne of grace, so that we may receive mercy and find grace to help in time of need.

A Glimmer of Hope

Bone scan just came back negative!!! This means it has not spread to the bone and makes it less likely to be a higher risk tumor! Our little Hazelnut is in the OR right now for a biopsy and bone marrow test (which is separate from the bone, so we are praying it hasn't spread there), and is expected to be finished in an hour.
The bone scan is just one piece of this giant puzzle, but it definitely gives us some relief. Our God is good!!!!!!!!!

Sunday, April 21, 2013

The Hardest Thing I Have Ever Written...

     Today is Sunday, April 21st, 2013.  This is a day I will never forget.  This is the day my daughter Hazel (or Hazelnut, as we all like to call her) has been diagnosed with a neuroblastoma tumor in her abdomen.  I am setting up this blog to keep all of our family, friends, and partners in prayer up to date on any and all information I can provide.  As I sit here broken, I think of all of you who are just as scared & confused as I am.  So I want to be able to provide answers to you as quickly as I can so we can all continue to hope and pray for our darling little girl.  For anyone who does not know how we have come to Children's Hospital Los Angeles to discover this devastating news, allow me to bring you up to speed:

     This all started Wednesday morning when Hazel was playing with me and her sister in the living room.  Out of the blue, she began crying in pain, telling me that she had "Owies".  When I would ask her to show me where it hurt, she could not really describe it.  One moment she would say her belly, then her diaper, then her back.  Many times she would just say, "I don't know".  This lasted throughout most of the afternoon, with breaks of normalcy between cries.  I thought maybe she had trapped gas, or was getting that nasty stomach flu that was going around.  She had no other symptoms, so I decided to just keep a watchful eye, and see if there were any changes. That evening, it seemed to go away.  She cried a few times in the middle of the night, but that is not so unusual for a 2-year-old.  The next day, Thursday, she continued to complain of "Owies", but did not seem to cry as much. She also appeared a little more tired and lethargic, but I assumed it was because she did not sleep well the night before.  I did notice a change, however, in her eating behavior.  She is normally quite a ravenous child, and she only finished half of her breakfast, barely touched her lunch, and flat out refused her dinner.  She would not even accept treats, except for two little M&M's.  After dinner, she fell asleep on the couch and spiked a fever.  That's when I knew something was wrong.  I even remember saying to Aaron, "My Mommy instincts are going crazy...".  Looking back, I truly believe God was moving within me, to get us to where we needed to go.  We decided to let her sleep and see how she was in the morning.  When she woke up, she still had a fever, did not want to eat anything and was extremely lethargic.  I gave her some Tylenol, and the instant it went down, it came right back up.  That is when I called the Pediatrician.  
     Once in the Dr.'s office, the Pediatrician agreed with my assessment, that this was not a normal flu or sickness.  As Hazel lied there so lethargically, the Dr. observed terrible dehydration, an increased heart rate, and a tender and enlarged abdomen.  She believed it may have been something with the appendix and/or liver and wanted us to go over to the ER right away.  At the ER in Simi Valley, Hazel received IV fluids, and they did blood work and an Ultrasound.  When the radiologist and nurse-practionioner discussed the results, they informed us that there was a solid mass, the size of a lime, growing inside her abdomen, but could not tell us anything else about it.  They called Children's Hospital, reserved our space and prepared us for transport.  With all of the waiting, we were there for about 4 hours.
     At this point, Hazel's fever was finally down and was much more hydrated, so the ambulance ride was great! She was constantly singing songs, waving to Daddy (who was following behind us in the car), and talking to the EMT's, who she referred to as Doctors :)  Once in the ER at Children's Hospital, it was another waiting game.  We arrived sometime around 7pm, which is when we met several nurses and doctors.  They told us they were going to review the scans to determine if they agree with the results or if they should run their own Ultrasound as well.  More blood was drawn, and more IV fluids were given.  Hours later, the Doctors came in to inform us that they agreed with the results:  There is a mass inside her abdomen and there are two things they are most concerned about; a Wilm's tumor, or a neuroblastoma.  They said we would be admitted upstairs to the oncology unit for more tests, specifically a CT scan. This was almost 1:00 in the morning.
     Saturday we saw many more hours of waiting until we finally got to take Hazel for her CT scan around lunch time.  She actually enjoyed, what we called, this ride in a tunnel.  She even fell asleep for part of it.  When the scan was over, we were told we would hear back from the doctor by the evening.  We spent the next few hours enjoying our little girl, getting support from family and friends, and watching Hazel sleep peacefully.  Then, sometime in the late afternoon, Dr. Araz Mararchelian, a neuroblastoma specialist, came to see us to discuss the results of the scan.  She told us that the CT was not 100% conclusive, but she was fairly confident that what we were dealing with was a neuroblastoma tumor.  She showed us the scans and described to us that the tumor was not a well defined shape, was pushing on the kidney and encroaching around part of the liver, but not invading it.  She also had ordered a lab test of Hazel's urine which could determine 100% if this was a neuroblastoma, but we would not get the results until Sunday. She discussed with us all of the possibilities we were facing, which was a very difficult, but informative conversation. 
     One thing the doctor is  concerned about is whether or not the tumor has spread to the bone.  So on Monday, Hazel will be getting a bone scan, and will be going under anesthesia to receive a biopsy and a possible bone marrow test (pending results from the bone scan).  Today, the results from the urine test came back positive, which has now confirmed the diagnosis of neuroblastoma.  After the next few tests, we will know what kind of tumor we are dealing with, what stage it is in and what our treatment plan will look like.  As soon as we know anything, I will continue to keep you posted.
     Throughout all of this, our little Hazelnut has been such a trooper.  She holds very still through the poking, prodding and tears.  The nurses always say how great of a job she does. She has charmed the pants off of most everyone who has come to see her.  And most importantly she has informed every staff member she has met that she is not Hazel, but Hazelnut!
     We want to thank everyone for all the prayer, love and support we have received over the last few trying days and I am sure we will continue to receive throughout the months to come.  
     We also have faith that our God is a loving, mighty, & powerful God, and He is always by our side through all of this. We believe it was He who guided us to the pediatrician and who stirred within me a feeling that I could not shake.  And it will be He who continues to guide us every moment of every day. One verse that kept coming up throughout the day was Isaiah 58:11- "And the Lord will continually guide you, and satisfy your desire in scorched places, and give strength to your bones; and you will be like a watered garden, and like a spring of water whose waters do not fail."  As we await the test results for tomorrow, we pray that Hazel can be given strength in her bones and that the tumor has not spread there.  If it has, we pray that God can give her his miraculous strength and that the treatment she receives will be what is best for her.  
     Hopefully my posts from here on out will not be as verbose, but I wanted to make sure that everyone had all the updated information!  So until tomorrow, goodnight, and GOD BLESS YOU ALL!