Tired Out

     Our little Hazelnut has recovered so nicely from surgery and is completely off of her pain medications!  She sits up in bed on her own, climbs onto a chair, takes walks, jumps and has been dancing! God has truly blessed us... That being said, this last round of Chemo has been a little rough on her tiny little body.  After 5 rounds of grueling drugs and a major surgery, I think her body has had enough of this Chemo.  Wednesday night, she spent the whole night whimpering and telling me "I don't feel good".  She even told me to come sleep with her in her bed and asked me to rub her back. Although it as been so difficult to watch her feel this way and not be able to fix it, I LOVE being able to be the one she turns to for comfort.  Especially since the few days after her surgery, she wanted nothing to do with me!  I think she was mad at me because I have to be the one to tell her she must go through all of the poking, prodding and uncomfortable procedures.  She was probably pretty tired of me too, since I'm always around!  After rubbing her back and trying to get her to relax a bit by rubbing some essential oils on her and doing some aromatherapy, she ended up vomiting a few times and her tummy has been gurgling quite fiercely, accompanied with some diarrhea (sorry if that's too much information!).  She isn't eating much and between her spurts of energy, just wants to cuddle up in bed a watch a movie.
     Last night was a much better night though.  One of the 3 Chemotherapy drugs that she has to be on during this cycle, Cytoxan, was not included in the cocktail because it was only a two day dose, while the others were 3 days.  Once this one was removed, she has been feeling a lot better.  She slept the whole night, only waking up when they have to come in to take her vital signs.  She still wanted me to sleep with her, so we stayed up until about 11:30pm chatting away and praying that God will continue to heal her body and help the Chemo do it's job in taking her Neuroblastoma away.  Each time we pray, she keeps thanking Dr. Bliss for taking the tumor out and it just melts my heart!  When she's older, I can explain to her how it was an extremely skilled team of people who worked for hours and hours to complete her surgery and that she can be thankful for each and every one of them.  Although her spirits are so much higher today, she is still pretty tired out and not eating much, so I know that she is ready to be done.  I know I am ready for it to be done. Thank goodness tonight is the very last round. The chemo should be done around 10:00pm tonight and the doctors say that we can go home tomorrow morning!  I think being home will be so much better for her appetite and her spirits, so I cannot wait!

Recovery

      Our little Hazelnut is recovering better than I could have ever hoped!  The first few days were rough, but she has bounced back to being her adorable self.  God has just blessed my daughter with an unimaginable strength, which makes it so clear to me that it has been a gift from Him.  Dr. Bliss told us that the way she has been recovering is par for the course for our Hazel, but for most kids with this type of surgery, her body is way ahead of the game.  One of the biggest surprises we had was when she decided it was time to get up and walk.  When she told me she wanted to get out of bed, she was really nervous to do it, and quite frankly, so was I.  But, once she got her footing and began taking those first steps and realized that she would be okay, she took off and I couldn't keep up with her!  She continues to be in good spirits and is eager to tell everyone how Dr. Bliss got her Neuroblastoma out and to show off her "bigger scar"!  She has been doing so well, that the Chemo they were going to give her starting this weekend, they are actually going to start tonight, which means we may get to head home this weekend! 
     For those of you who do not know, Hazel's treatment plan is broken down into 3 Phases.  Phase I consists of 6 rounds of Chemotherapy and surgery.  Phase II consists of a round of high-dose Chemo coupled with a Stem Cell Rescue (which is like a Bone Marrow transplant without needing a donor, but instead harvesting her own bone marrow/stem cells in the beginning of treatment), and radiation.  Phase III consists of Immunotherapy treatment.  In total, this is about 18 months of treatment.  The chemo that she begins with tonight is the 6th round, and the very last round of Phase I!!!!!  I cannot believe we have made it this far and honestly could not see this day coming for a long time.  I am so unbelievably thankful for how our journey unfolded to get us to this point, given that she has done so well.  But I am also so glad that we do not ever have to go back!

     Another thing that has blown my mind is something that Aaron and I realized after Hazel's surgery while speaking with Dr. Bliss, her surgeon.  He informed us that the tumor that he removed from our daughter was somewhere around the size of a tennis ball.  This came as an absolute shock to me because this tumor has already shrunk more than 50%, and since her diagnosis, I have been under the impression that the original tumor was about the size of a lime.  Boy were we wrong!  Her original tumor was, in fact, about the size of a nerf football or small melon!  AHHHHHH!  How did I not know this?!  I saw her original scans; I spoke with all of the doctors; I knew what we were treating, but I had no idea a monster of this size was invading our little Hazelnut's body!  I truly believe that, somehow, God protected me from this information because I was in no way ready for it.  But now that it is out and we have almost completed this part of our fight, He allowed me to become aware of this travesty. Because I wanted to see it for myself, I went down to Medical Records and had all of her scans put on a CD for me.  When I opened her original MIBG scans, tears flooded my eyes.  I have included the image below, and hopefully you can see several images of a grey body/abdomen.  There is a bright white mass along this side of her abdomen, and that is the tumor!

     Who is as happy as I am to have that thing out of her?!!  Because that huge tumor is so aggressive and Neuroblastoma likes to hide out, we have to continue with aggressive treatment. The next step is her Stem Cell transplant, which will be in about 5-6 weeks from now. I look forward to spending this time at home as a family! Please keep us all in your prayers as we prepare for that arduous next step. And continue to think of Hazel as she goes through this last round of Chemo.  This is the toughest round, so please pray for her little body!

PICU

     We have been in the Pediatric Intensive Care Unit since Hazel's surgery and she has been doing fairly well! It was extremely overwhelming for me at first though. When we first came in, we saw her laying in bed with 7 different tubes coming out of her and all sorts of wires. She also had an insulating shower cap on to keep her head warm. What surprised me was that she was already coming out of her anesthesia, and although groggy, was responsive to us and even fighting her breathing tube. I was able to tell her that Dr. Bliss was able to take her Neuroblastoma out and she started nodding her head showing is that she was happy! I'm so grateful God gave us that moment because the very next one she began gagging and vomiting. She ended up doing this several times, but the incredible nurses kept her clean and as comfortable as possible. It just broke my heart to watch, especially when we saw a solitary tear stream down he cheek.

     They pumped her full of four different kind of medications to help her fall asleep, but our little Hazelnut pushed through them. She wanted nothing to do with sleep and kept her eyes open and made sure we knew she didn't like this new situation. But for someone so agitated, she remained extremely calm. She wasn't pulling away or flailing around at all; just keeping her eyes open! The nurses were astounded and we told them that our daughter has quite a strong will!

     She remained pretty agitated throughout the night and even pulled out her NG tube (one that goes up her nose, down her throat and into her stomach to pump fluid out until her bowels begin working) a little bit, so she had to have her arms restrained. She really didn't end up falling into a deep sleep until late the next morning. She has been sleeping fairly peacefully ever since, waking up for 10 minutes or so here and there.

     She has had an epidural in place since the surgery, so although she has been bothered by all the tubes, she doesn't seem to be in pain at all, which we are so thankful for. The nurses have all said that she is doing very well and will recover quite nicely. Slowly but surely, they continue to take out more tubes and today we are going to be moved upstairs to the 4th floor! 

     I am so glad to have this step in Hazel's recover behind us now! It is so good to know that that awful thing is no longer inside of my daughter but is instead being chopped to pieces to help researchers gather more data for a cure. Although we had an extremely successful surgery, it is hard to feel completely relieved knowing the long road we still have ahead of us, particularly the Stem Cell transplant. But for now, I will try to  just focus on each day as it comes and rest easy knowing that the tumor is out! We have about 7-10 days ahead of us for recovery, then they will administer the last round of chemo for this phase of treatment! Praise God we are here!!!

     I cannot thank you all enough for the support you provided us with on the day of her surgery. From the bottom of my heart I tell you that I could feel lifted up through your prayers and just knew that God was working!

It's Done!

     The surgery is now over, and we just got finished speaking with the surgeon and I have fantastic news to report!!!  Dr Bliss and his entire team worked many, many hours and were able to remove 98% of the tumor and save kidney. This is the BEST possible outcome, so thank you, thank you, thank you for all lf your prayers and thoughts today! With Neuroblastoma, unlike most adult cancers, they can never actually remove 100% of the tumor and research has shown that it really doesn't matter as long as you can get at least 95%.  Dr Bliss believes that the  small percentage left in her body is already dead or will soon be after more treatment. So we are extremely happy and relieved with these results. OUR GOD IS SO GOOD AND IS THE MIGHTY HEALER!!!

     The surgeon was sure to tell us that his team (anesthesiologists, surgical fellows, nurses, etc.) worked beautifully and the surgery went as smoothly as he could have hoped for. Now we are just about to head into the ICU where she will be for at least 24 hours. She will still have many things hooked up to her and will still have a breathing tube, so we are looking at a long couple of days (keep praying!). Here's a picture of all of us wearing our Hope For Hazel gear;

In the OR

Hazel was just taken into the OR a few minutes ago. The surgeon said that anesthesia will take about an hour to get set up and then he can begin. They gave her some sleepy juice before wheeling her in and she got the best giggles in the world! That made it so much easier for us to say goodbye. They told us they will update us frequently, so keep your eye out!

Waiting

     We are in the surgery waiting room right now and we were hoping to be called any minute. Unfortunately, they just came in to tell us that the OR is running behind and it will be at least another hour. Besides being super hungry (poor girl), she is in great spirits and has tons of energy! She knows that today Dr Bliss is going to get her Neuroblastoma out and she will be getting and even bigger scar (something she is very proud of!). I will keep you all posted when we have more info!

Surgery

**Hazelnut's surgery has been postponed to Wednesday, August 21st**

     First let me just give you this quick update as to why Hazel's surgery has been postponed. She is feeling great and is completely fine, so please don not be worried!  There was just a small scheduling conflict and because Hazel's surgery will be fairly long, the moved hers to 11:00 AM on Wednesday, August 21st.  

     We met with the surgeon on Monday and had about an hour and forty-five minute conversation.  It was the conversation that I expected, but, quite honestly, it was still pretty overwhelming.  As the CT scan showed, Hazel's tumor has shrunk more than 50% but is still wrapped completely around the major blood vessel connected to her right kidney.  He said that blood vessels are extremely tricky to work with because, unlike arteries, they do not squirt blood, but they pool it; which makes it very difficult to find the source of the bleeding and resulting in a lot of blood loss.  Because of this, he is not 100% sure that he will be able to get all of the tumor and a number of different things can happen during the surgery.  The best scenario is that he gets in there and it ends up being simpler than the scan shows and he gets all of the tumor.  The next scenario is that he is able to get all of the tumor, but must sacrifice her kidney (this is a scenario that he will avoid at all costs, but is nevertheless a possibility).  The last scenario is that he saves her kidney but is not able to remove all of the tumor.  So her surgery will be long, complicated and risky.  All in all, it will take somewhere between 6-8 hours of slowly chiseling away at that awful tumor inside my daughter's body.  The good news is that he showed us her original scans next to her newest ones and we were absolutely stunned with how much it shrunk and were so relieved to see such a great response!  Our oncologist is confident that if the surgeon has to leave a small bit of tumor left inside her, that the subsequent treatments will be effective in eradicating it.

     Another hopeful aspect is that we have complete confidence in our surgeon, Dr. Bliss.  He is an absolutely wonderful man and truly cares about our little Hazelnut.  He also informed us that he has had five other surgeries that were very similar to Hazel's case, and as a comparison in regards to how compacted her surgery is to the others, he said hers was somewhere in the middle.  Out of those 5 surgeries, he has only had to remove one kidney (and that young girl is about 18 years old and disease free now!).  The other four, even though fairly complicated, he was able to remove 100% of the tumor! Ultimately however, we know that our God is the ultimate Healer and has our daughter in the palm of His hand.  I take refuge in his promises:

• Joshua 1:9 "Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”
• Job 12:10 "In his hand is the life of every living thing and the breath of all mankind."
• Mark 5:34 "And he said to her, “Daughter, your faith has made you well; go in peace, and be healed of your disease.”
• Isaiah 43:2 "When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up- The flames will not consume you."

    Please keep us in mind over this next week as we feel anxious for her upcoming surgery, and of course pray like crazy on the actual day!  As soon as we get any updates, I will be posting them on the blog, so keep an eye out.  Thank you all so much for your support, it truly means the world to us!

Going Home!

     Just a quick update to let you all know that all of our little Hazelnut's blood cultures came back negative and her counts, although still super low, are trending up; so we get to go home!!!  I am so happy that we will have this time together as a family before we go in for surgery next Thursday!  We meet with the surgeon at 2:15pm on Monday, August 12 to discuss all of the details, so we will keep you posted. 
     Also, for her surgery and upcoming stem cell transplant, Hazel will be in need of A+ blood and platelets from any blood type.  We have been so blessed by all of you who have donated already and Hazel has used so much of your blood.  Thank you so much for giving this part of you to our daughter. She relies so heavily on these blood transfusions and we hope that you know how much you are saving her!  If any one can, please consider coming down to the hospital sometime in the next two months and give Hazel, or any other child here in need, the gift of life!

CT Scan Results

     Aaron and I just got done talking with the Dr. Tran about Hazel's CT Scan results.  He told us that her tumor has shrunk a little more than 50%!!  This is fantastic news for us!  Sometimes neuroblastoma tumors do not initially respond so favorably to chemotherapy, so the fact that hers has shrunk considerably work so much in he favor.  We still meet with the surgeon, Dr. Bliss, on the 12th and will go ahead with her surgery on the 15th.  There is something that still concerns Dr Tran, however.  The tumor is still encasing some major blood vessels around the kidney, making for a much more complicated surgery than we were hoping for.  He thinks they may not be able to remove the entire tumor, but we won't really now anything for certain until we meet with our surgeon.  Dr. Tran assured us that Dr. Bliss is very capable and just recently preformed a surgery very similar to Hazel's case, with much success.  He also said that even if we have to leave a small piece of the tumor inside Hazel's body, that all of her aggressive subsequent treatment should take care of it.  But ultimately, I know that God has her in the palm of His hand and will work through every step of the way to bring us to where He wants us.
     Today, Hazel is exhausted. She spent so much of last night crying out in some sort of discomfort, but could not verbalize what was ailing her.  Then around 4:30 in the morning, she started pulling at her dressing, and peeled it halfway off!  So we had to wake her up and change her dressing and she finally got settle back down by 6:00.  I told her it was time to sleep, but she said she didn't want to!  I was so tired at this point, that I put a movie on for her so I could get a few hours of sleep.  By the time I woke up at 8:00, she was asleep and has not woken up!  We are still waiting for her blood cultures to come back to determine whether or not she has an infection, and because she has a runny nose, we are in isolation once again!  Hopefully, once her symptoms subside, we can venture outside the room, but until then, we have to get creative!  We are also waiting on the results of her blood counts.  If they have not moved at all, we may be here quite a while.  But if they are already trending up, then we hope to be home by the weekend.
     Thank you all so much for praying for the results of the CT scan.  I feel so relieved to know that all the drugs we have been pumping through Hazel's veins have been doing their job!  I truly have been feeling lifted by your prayers and God has given me so much hope and has been blessing me with His strength each and every day.  

A Trip Back To The ER

     Our little Hazelnut spiked her usual between Chemo fever, so we are here at the CHLA Emergency Room waiting to be admitted.  Her hemoglobin level is at 5.2 (anything under 8 requires a transfusion), and her ANC ( a comprehensive white blood cell count) is at a 0.01 ( anything below 500 is considered neutropenic). So needless to say, he will be getting a blood transfusion. Her platelets are at 6,000 when they should be at least 20,000, so she will getting a platelet transfusion as well. These numbers can sometimes dumbfound me. Hazel has been, and continues to be, so full of energy throughout this entire process that you would never know this was going on inside her little body. Even the doctors and the nurses are always surprised by her numbers when they see her! But today, I have relied on my mommy instincts once again.

     When we were at home, her fever never reached the magic number to send us to the ER, but I know my daughter, and I know when her fever will continue to go up. And she was not quite acting herself today, so I was very proactive in getting her here. I am so thankful for these instincts, because her fever go higher and those blood counts were so low! I've continued to use these instincts even here in the ER. A nurse's assistant came in to take Hazel's temperature and got a reading of 97.1! She had been close to 101 before this, so I didn't trust this number an asked to have them do it again. He got a reading of 97.5. He took down these numbers and left the room to give them to the nurse. My instincts told me that this reading was still wrong, so I took her temperature myself and got a reading of 100.6!!! This discrepancy scares me. So I called the nurse in to tell him my reading an he took the temperature himself and got a reading of 99.6. He asked me to do it for him, to make sure what I did before was correct. I took her temperature the exact same way I did before and got the exact same reading as before: 100.6.  The nurse and his assistant both did their jobs and I don't know how this could have happened. But if I had accepted the original reading of 97.1 and Hazel's temperature went up, it could have been so dangerous for her! So I urge every parent to trust their instincts and do not be afraid to speak up! The worst that can  happen is that you're wrong. But if you don't speak up, and your instincts were right, then the worst actually can happen.

     Once we get admitted, which should be any minute, we will be here until her counts come back up (this is all becoming all too familiar, right?!). In some ways this works much better for us. Hazel's CT Scan was scheduled for 8:00 tomorrow morning. Since we will already be here, I will not have to drag a sleepy, and most likely grumpy, 2 year old to an uncomfortable waiting room filled with germs. Instead, Hazel can drink the nasty contrast solution to prep her for the scan and wait comfortably in a familiar hospital room. Also, I may even be able to get the results back from the scan and talk to the doctor about them in person! I was really not looking forward to having that conversation over the phone.

     So tomorrow is going to be a VERY big day and I ask that you pray extra hard for us. There has been a term that I have read on a lot of support group sites that I am a part of that seems to really apply to how I am feeling about tomorrow and its is: SCANXIETY. So please pray for my scanxiety, and that I will sense God's presence, strength and peace tomorrow; and that I will put all of my trust in Him. Please pray for Aaron who has to be at work during these next days. Pray for him to be able to trust that God is in control of all of this and that he will be able to concentrate!  I know God has had His hands all over this journey and tomorrow is no exception!!

             Here is Hazel in the ER

So Relieved!

     We got to come home on Monday, and, almost instantly, Hazel's entire disposition changed!  She went from this tired little girl who did not even want to get out of bed; back to my spunky little 2-year-old.  There is surely something to be said about being home, surrounded by those you love to lift your spirits.  In addition, her nausea already seems to be decreasing.  Today, she only had one dose of her anti-nausea meds and has been eating and drinking like normal.  I cannot even begin to describe how relieved I am to have these things happening. God is being so faithful, and my little girl is so unbelievably strong! 
     Since being home, so many things have happened already, but one of the most exciting was going through all of the mail we received in the PO Box while we were away.  It was so humbling seeing the generosity that has poured in from all corners of the globe and Hazel and the other kids had a blast opening everything!  This picture gives you just a glimpse of what we have been receiving:

     One of these gifts in particular truly has touched our hearts, and it was a painting done by a woman named Lisa Boros.  She lives in Canada and found out about Hazel through the "Pizza Bonanza".  She paints for a living and was so inspired by Hazel's story that she offered to do a painting of Hazel!  Please go to her Facebook page at Lisa Lambertus Art & Design or her website www.lisalambertus.com and check out some of her beautiful work.  Here is what she did of our little Hazelnut:

Absolutely Stunning!!

     As we await the CT scan that will be happening next Tuesday, please keep praying for us, that we can enjoy this time as a family as much as possible and that we put God first, even when things get busy with such a full house!  And please pray for Hazel to continue to feel well and for her strength to return to her in these weeks before surgery.  Thank you all!