Saturday, July 27, 2013

Isolation

     Our little Hazelnut tested positive for a virus....she got a cold!  Fortunately it has been very mild and she hasn't been bothered by it in the least, but it means that we have been stuck in the room in isolation since Wednesday, and have to stay this way for the rest of our time here.  For Hazel, this has been a very huge challenge because we are hardly ever in the room.  She keeps asking to take walks, go to the playroom, and see her friend Demie and does not understand when I explain to her why we can't.  Despite these moments of frustration, she has astonished me, once again, by just taking this all in stride.  She has managed to adjust to yet another reality and finds the joy and fun in each day.
     Today has not been a challenge to stay in the room, because the nausea has settled in.  Round #5, which has the same Chemo drugs as Round #3, is known to be one of the toughest rounds for nausea and vomiting, and she did extremely well last time, with only a few days of symptoms.  But she was stronger then.  Now her body has gone through so much more and I think it's beginning to take it's toll.  She hasn't eaten anything yet today, and she is already of two different anti-nausea meds.  We are adding another, to see if it will help her get her appetite back.  She is not vomiting, so I am VERY thankful for that!  She hates it, I hate it, and really, I think everyone hates it!  So please pray for her to not have to go through that.  And also, pray for all the kids who have a much harder time in treatment than Hazel.  I cannot imagine how tough it must be for those children and their families who seem to get every side-effect in the book.


     We also received the results from her kidney test she had done on Tuesday.  This test was done to see how Hazel's kidney's are functioning, because several of the drugs can adversely affect the kidneys.  Some kids can even lose one.  But her results were fantastic!  Her kidneys are function well above the normal range and show now signs of a downward trend!  I can only hope and pray that this continues to remain the case.  I also spoke with Dr. Tran, and barring any complications from this round of Chemo, we have officially set our date for the pre-op CT scan and the surgery! The CT scan will be August 6th, and it will tell us how Hazel's tumor has responded to all that we have been putting her through.  If the scan is favorable (which he is very optimistic that it is), then we will meet with her surgeon on August 12th to discuss everything, and her surgery will be on August 15th!!!  I have such mixed feelings about this step.  On one hand, I am so excited to get this horrible tumor out of my daughter's body.  But on the other hand, I realize that Hazel's tiny little body will be undergoing major surgery, and it's no easy task.  So as it gets closer, keep her and our entire family in your prayers.  He also said that if her surgery is successful and her post-op scans show no evidence of disease that we can skip Round #6 of Chemo!! His hope is to have her body completely cancer free before her Stem Cell Transplant (can you believe it!).  The transplant, if Round #6 is NOT cancelled, will be sometime in September; but if it IS cancelled, then it will begin the last week of August.  The fact that these next steps in her treatment are right around the corner, is all a little overwhelming, and honestly, putting a lot of fear within me.  But I was absolutely terrified about Chemotherapy, and God has carried Hazel and our whole family through it and I know He will continue to do the same! 

Wednesday, July 24, 2013

A Glimpse Into Our Daily Routine

     Hazel and I just got settled, in what will be our room for the next 4-5 days, at the hospital. She is happy to be back, but always struggles with the routine of settling in.  When we arrive at the hospital, we have to get visitors passes at the front desk that will allow us to go to admitting.  Once in admitting, I have to fill out several sheets of hospital paperwork, provide my insurance card and I.D., pay my insurance co-pay and receive our admission papers and wristbands.  Then we have to go back to the front desk with proof of admission to get the correct passes to allow us upstairs to the 4th floor.  When we finally get up to the floor, we have to find our room so I can put all of the stuff that I was able to carry the first trip down, while Hazel checks out the room.  Sometimes she gets upset when we get to the room because it is not the same one as last time (typical 2-year old, right?!). So I have to spend several minutes calming her down and showing her that it has all the same amenities as every single room we had before.  Then, right of the bat, the nurse has to ask me tons of questions to make sure their system is up to date on everything Hazel, while the PCSA (Patient Care Service Aide) takes Hazel's blood pressure and temperature.  The nurse then has to listen to Hazel with a stethoscope, put her hospital wristbands on, draw blood for labs, connect her IV fluids and swab her nose to check for infection.  I think I may even be forgetting a few things!  Then I need to go back down to the car to get the remaining things I was not able to carry the first time, bring it back up to the room and put it all in it's place, all the while keeping our little Hazelnut entertained, of course!  
     Usually, once this routine is done, we go right out for a walk to say hello to all of her nurse and patient friends, and to check if the playroom is open!  Unfortunately, Hazel has been sneezing a lot today, so we have to stay in our room in isolation until they can determine whether or not she has a virus. They do this by spraying water up her little nose and sucking out mucous with a small machine to have it tested (TMI, I know!). However, right after spraying the water in her nose, the suctioning device decided to stop working, so they have to come back and do it again!  PLEASE PRAY HAZEL IS NOT SICK AND THAT GOD WILL TAKE THESE SYMPTOMS AWAY! IF SHE IS SICK, WE MUST STAY IN ISOLATION THE WHOLE TIME WE ARE HERE!  In addition, Hazel will also be getting a blood transfusion before they start her Chemo Round #5 tonight and will have to get her dressing on her line changed tomorrow (this happens once a week and she absolutely hates it!).  It is so hard to watch her have to go through all of this, but she continues to remain positive and a smile comes right back to her face once the tough part is over.  I admire this little one so much....
     Another part of our new routine happens at home.  Aaron and I have had a crash course in nursing school because she not only requires care in the hospital, but also every day at home.  I believe I have written about this before but as a quick recap: we have a home nurse who comes out twice a week.  She draws blood and does a clinical check on both days, and then on the second day she also changes Hazel's dressing.  Then each and every day Hazel has to take 2 different medications and a third one is added to prevent nausea and vomiting as needed.  When we give her a bath, we must cover her line with plastic wrap (Press N' Seal has become our best friend), and medical tape because it is not allowed to get wet.  For at least a week after Chemo, while Hazel's white blood cell counts are low, we are also required to give her daily injections.  Aaron must prepare the syringe, which take many steps, and while I hold her down he cleans her little leg and gives her the shot.  We have her throw the, what she calls, "yucky shot" supplies away and gets a handful of M&M's.  Then, before bed we have to flush both of her lines with a syringe of saline to clean it out and a syringe of Heparin, which is a solution that stays inside her line to keep it from clotting.  This requires many steps which I laid out in these photos:

Setting out all of the supplies
Cleaning the red line
Flushing with saline


Flushing with Heparing

Cleaning the blue line

Flushing with saline, and Hazel loves to help!

Flushing with Heparin

Throwing the trash away!

     This is just a small glimpse into the changes our family has gone through over these last months and I am sure we are in store for plenty more.  But for now, we have adjusted to these routines and continue to rely on the Lord each and every day.  Now, Hazel will be in the hospital at least through the weekend and will be getting the Chemo that causes pretty bad nausea and vomiting, so please pray that God can help her to not have severe side effects.  We absolutely feel lifted up by all of your prayers and have seen God's faithfulness at work!  He has been using Hazel's story to display His glory throughout and world and He has put so many people in our lives to bring us encouragement and hope.  Also, she has been feeling so good throughout her treatment thus far and has not lost a single pound! It has actually been pretty miraculous and I am reminded of these verses about His faithfulness:
  • Psalm 91:4 "He will cover you with His pinions, and under His wings you may seek refuge; His faithfulness is a shield and a bulwark"
  • Psalm 89:8 "O Lord God Almighty, who is like You? You are mighty O Lord, and your faithfulness surrounds you"
  • Lamentations 3:22-23 "The Lord's lovingkindnesses indeed never cease, for His compassions never fail.  They are new every morning; great is your faithfulness"
     Thank you for keeping up with our family and I will update again soon!

Wednesday, July 17, 2013

Back At Home

     Our little Hazelnut is back at home!  On Monday we were told as soon as the news crews(!) were done with their interviews we could go home, and boy was she happy!  She is feeling extremely well and is as rambunctious as ever.  The home nurse will come over tomorrow to draw her labs and she has a clinic appointment next Tuesday to see if her body is ready for Chemo.  If it is, we begin Chemotherapy Round #5 on Wednesday.  It is so hard, as a mother, to watch my daughter's little body just recover from one round of chemo, just to turn around and knock her down again.  But in Hazel fashion, she continues to take it all in stride with a big smile on her face :)

     After Hazel's "SEND PIZZA" story hit the airwaves we have received so many well wishes, prayers and inquires about sending things to her.  First, let me say THANK YOU to all of you and I wish I could respond to each and every one of you.  If you would like to send Hazel something or write her a letter, you can send it to:

Hazel Hammersley
PO Box 1449
Simi Valley, CA 93062

     Here also is a little compilation of Hazel's reactions to watching herself on TV for the first time!  Enjoy!

Sunday, July 14, 2013

Pizza Bonanza!

     First let me say, Hazel is still in the hospital waiting for her White Blood Cell counts to go up.  As soon as they do, we can go home for a few days, then will head back to the hospital for Round #5 of Chemo.  So I will keep you updated as soon as we know when we can go home (we are so ready!).

   Since we have been here for quite a while, we try to pass the time by doing fun and silly things for our precious 2-year old.  One of these things happened to be my Mother and I putting a sign up in the window with medical tape reading: "SEND PIZZA RM 4112".  The nurses, doctors, other children and we all had a great time with it and thought it was just something to brighten someone's day.  Here are a few photos of us doing it:




     This sign was up for several days without even a single phone call asking to send up a pizza (which we completely expected!).  Then, on Saturday, it all changed.  Aaron had left the hospital, while my father-in-law stayed with Hazel, to go home and spend some time with me and our other children.  I would return later that night.  While at home, we began hearing news that several pizza's were being delivered to the hospital.  After only a few short hours, we were told that someone had taken a picture on the street of our sign, had posted it to Reddit.com and it had reached #1!!  Then, someone ended up posting a link to our BlogFacebook, and Donation Page, which then all went bananas!  Hazel woke up from her nap to the smell of pizza and was so excited to chow down!  Several other children and nurses came into the room, with music playing, and had themselves a wonderful Pizza Party.  As of yesterday evening, there was more than 20 boxes delivered and more was coming!  We had such a great time!  However, due to the sheer number of pizzas and inquiries from the media, the hospital has asked that the pizza deliveries end and thank everyone for their support. But I ask the community to please continue supporting Hazel and other children like her through making donations to our funds or to Childhood Cancer Research. 
     We have been absolutely humbled and surprised by the outpouring of love and support from the online community and can only hope and pray that this brings awareness to Neuroblastoma and the Childhood Cancer Community.  Awareness and funding is severely lacking, and to help get better treatments and outcomes for our children, we need all the support we can get! I truly felt that God used this wonderful day to help lift, not only our families', but everyone on the 4th floor's spirits.  We all need a little hope up here.  Here are a few pictures of the joy that was spread yesterday through the kindness of strangers:






Thursday, July 11, 2013

Still Here

   Our little Hazelnut is still at the hospital.  Her counts dropped again over the weekend and had to get another blood transfusion and also ended up needing a platelet transfusion.  We thought her white blood counts would have come up on there own by the end of this week, but as of this morning they still haven't budged!  Which means we are still at the hospital and she still has to receive shots everyday to help her counts recover.  In addition, we were supposed to start Round 5 of chemo this coming Monday, and her surgery was scheduled for August 1st, but all of that will be pushed back now.  As soon as her counts recover, we will begin to figure out what her new schedule will be, but until then, we wait.  She was supposed to get a CT scan before surgery to see how much the tumor has shrunk, but that has to wait now too.  I am most disappointed about this being pushed back because right now I have no idea how big or how small that tumor inside my little Hazelnut's body is and was ready to find out!  Now we have to wait! Although disappointing, this gives all of us more time to pray for that tumor to shrink and for patience.
    
    Despite having low counts, Hazel feels great and has tons of energy, so keep those prayers coming!  Also, we started a Facebook page for Hazel.  Please go to Hope For Hazel and like her page, and share it so we can get as many people praying and supporting her as we can!


**FOR MORE WAYS TO HELP GO TO Here To Serve AND CLICK ON THE "JOIN" BUTTON TO LOGIN TO HAZEL'S CARE COMMUNITY**



Monday, July 8, 2013

Doing Better

    Just another quick update:  Hazel is still at the hospital, with Aaron, and is feeling much better!  Her mouth sores never got any worse and her fever went away very quickly.  After her blood transfusion, she perked right up! Her platelets also dropped, so she also had to get a platelet transfusion. Even after these transfusions, her counts are still low and have only been slowly climbing.  As soon as they are high enough, they can come home!  So please pray these counts can jump up so we can all be together!  We sure are missing her smile, but love it when we get to see pictures like these:


    It is in these moments that I see how strong our little Hazelnut is.  As adults, if we were in a hospital bed like her, I think we would be wallowing in self-pity, but not our champ.  She, by God's grace and strength, is finding the unadulterated joy in each day and just continues on being a kid.  I look at this face with tears in my eyes because she doesn't fully understand everything else in this picture, but just is enjoying that moment.  I love her so much...

    Here are some verses that I have read, that come to mind when I see this picture: 
  • Proverbs 17:22 "A joyful heart is good medicine, but a broken spirit dries up the bones"
  • Jesus said in John 16:33 " These things I have spoken to you, so that in Me, you may have peace. In the world you have tribulation, but take courage; I have overcome the world."
  • Romans 5:3-5 "More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us."



    I also wanted to congratulate Courtney on winning the puppy that was raffled off for Hazel's Fund!  She has decided to name the puppy Hazel and we couldn't be more touched and honored.  We know she is going to a good home and has tons of animal buddies to play with!




**FOR MORE WAYS TO HELP GO TO Here To Serve AND CLICK ON THE PARTICIPATE/VOLUNTEER BUTTON TO LOGIN TO HAZEL'S CARE COMMUNITY**

Thursday, July 4, 2013

Neutropenic

    Just a quick update:  Hazel spiked a fever, started developing some mouth sores and was feeling pretty crummy today, so Aaron took her to the ER at CHLA.  When she got there, they took her blood and saw that she was extremely neutropenic, so they decided to admit her.  but as it goes, a bed was not ready.  After waiting for about 7 or 8 hours, they finally got up to their room!  Needless to say, it has been a rough day for the both of them, and it may not get any better for a few days to come; so please keep them in your prayers so that their spirits will be lifted.  All I know as of right now is that she will be getting a blood transfusion tonight and is on tons of Tylenol.  I will update you more as soon as I find out more!

Also, please pray for my fellow Simi Valley residents!  The fireworks exploded into the crowd and there are at least 20 injured!  Several of my friends were in the front row and are terrified.  One of my friends was hit in the stomach, but her life proof case on her phone took the hit, and she walked away uninjured!  GOD IS A MIRACLE WORKER!!

**FOR MORE WAYS TO HELP GO TO Here To Serve AND CLICK ON THE PARTICIPATE/VOLUNTEER BUTTON TO LOGIN TO HAZEL'S CARE COMMUNITY**

Wednesday, July 3, 2013

An Encouragement

    Our little Hazelnut had a fantastic week at the hospital!  Despite having 3 different Chemo drugs pumped through her veins (one of which was a continuous flow for 72 hours!), she continued to be a ray of sunshine.  She hardly spent any time in her room; but instead roamed the halls, making friends with all of the nurses along the way, spent hours in the playroom, read books, did drawings and so much more.  You prayers definitely carried us through last week!
     I was also reminded of something that I am not sure I have shared with all of you (I would look back on my first few posts if I could, but honestly, it's just too painful). When Aaron and I were first at the hospital with Hazel, it was an extremely dark and fearful time.  We still have many hard days, but it has been no where near as intense as I thought it would be.  God has truly been so faithful to us!  That being said, those first days are something I would never wish upon anyone.  We were trying to find hope anywhere that we could, but everywhere we turned was just full of hopelessness.  We kept receiving bad news after bad news, and we had no idea what this world of Cancer was going to be like; so we felt incredibly hopeless.  But one of the very first signs of hope, that I firmly believe God orchestrated for us right when we needed it, appeared in the form of a five-year-old girl.  As we were being taken to one of the countless first tests Hazel was having, we were wheeled in our wheelchair into an elevator.  In this wonderful elevator, we were joined by this young lady, who had obviously been through the treatment we were fearing so much.  This bald beauty was the most chipper and bubbly young thing I have ever seen walking through a hospital.  She was bouncing up and down, singing and making conversations with everyone around her.  We were able to talk with her during our short elevator ride together, and this interaction is something I will never forget.  She gave us hope that the world we were thrust into was not all dark and depressing, but could be full of energy and joy.  I longed to have a moment like that with Hazel, but it just felt so far off.
    During this last hospital stay, Hazel and I were roaming the halls as usual.  We had just stopped to play a quick pick-up game of Hide-And-Seek when I saw a young family in the exact same place as we were only a short two months ago.  Their young, beautiful daughter was being wheeled in her wheel-chair, looking like Hazel did in those first weeks, and Mom and Dad looked as though they had just been in a car-wreck.  Hazel smiled, ran over to them and chatted them up as they walked by, and I saw a smile come to their faces.  As I settled into bed, I broke down in tears because I realized that Hazel might be to that family, what that little girl in the elevator was to us.  I felt their despair, their hopelessness and confusion, and spent many tears praying for them.  
    The next morning I went to find that family so I could reach out a friendly hand and to offer some hope and encouragement.  I can see how God has used Hazel's story so much already, and I felt He was leading me to do that for this family.  We spoke through tears and shared one another's burdens in a way that I have never experienced.  And it soon became clear to me, through many of the things being said, that God wanted to bring us together.  For example, they live in Moorpark (which is the next town over from where we live, for those of you who don't know), they have 3 young children and were also diagnosed in a matter of days (which hardly ever happens!).  Their beautiful daughter who Hazel and I had the pleasure of seeing is named Hannah.  She is 3 years old and has been diagnosed with Leukemia.  This family needs your prayers!  Please rally around them as you have around us, so they may feel the power of His hope!  
    Since coming home, Hazel has been doing fairly well.  The first few days were fantastic, and we even spent one of them swimming!  However, her counts have dropped pretty quickly and she's feeling a bit nauseous and run down.  I also think I see some small mouth sores beginning to form.  PLEASE PRAY FOR HER!!!  We are scheduled for a blood transfusion on Friday, which should definitely help, but please pray for quick healing!
    There is a verse that continues to encourage me, and if I have written it before, I'm sorry for repeating myself. It is Psalm 34:17-18: "The righteous cry, and the Lord hears and delivers them out of all their troubles.  The Lord is near to the brokenhearted and saves those who are crushed in spirit".  Please pray that our family continues to seek Him and allow Him to be near us.  If we let Him lead us and put our faith and trust in Him, I am confident He will carry us through this time.  And continue to pray that we works a miracle in our little Hazelnut's body and that He uses our story to show His glory!  

**FOR MORE WAYS TO HELP GO TO Here To Serve AND CLICK ON THE PARTICIPATE/VOLUNTEER BUTTON TO LOGIN TO HAZEL'S CARE COMMUNITY**

WE NEED SOME HELP WITH DINNERS THIS MONTH, SO IF YOU HAVEN'T ALREADY, PLEASE SIGN UP!!