Cycle One DONE!

   Our little Hazelnut was able to be discharged on Valentine's Day and has officially and successfully completed Cycle #1 of Immunotherapy!!  It feels utterly extraordinary to be able to say that she is one-six finished with her very last phase of treatment, but after last week, I know it will be a difficult journey.  Overall, it was a very challenging experience (but I kept telling myself it was not nearly as difficult as the ICU!), with Hazel never feeling comfortable, losing her appetite, being overcome with exhaustion (from the discomfort and the around the clock Benadryl), and fighting pain, fevers and allergic reactions.     The first day she started the Ch 14.18, she was experiencing quite a bit of pain.  It came upon her almost immediately and she was squirming, crying out and kept saying "I want to go home!". The nurses and doctors had to raise the pain medication drip several different times until we found the right dose, but she never really recovered or got comfortable and no amount of pain meds would have been able to help her.  In addition, her whole body turned red and hot.  However, she never broke our in hives or had any swelling, so the team was unsure if it was an allergic reaction or not.  Thankfully, she made it through the day (and each subsequent day) without ever having to slow or stop the infusion and was able to receive the whole dose, which is the most important factor of this treatment.  In the evening, the pump was turned off, and she was weaned off the pain medication slowly.  She immediately felt better once the infusion was done, but never got to 100%.  In fact, much different than I had hoped, we had many a sleepless nights during this hospital stay.  The second, third and fourth days, her pain was managed so much better!  She still felt very unwell and uncomfortable, but was no longer crying out.  She hardly ever got out of bed, if at all, and would not eat anything.  Then each night, just as the infusion was finishing, Hazel began breaking out in hives and would have swelling in her face and lips.  One night she began coughing so much that she required a breathing treatment.  It was certainly a frightening time, but I had so much confidence in the fact that the Lord has brought us through much worse!  And the medical team that administers this treatment is extremely experienced and knew exactly what to do in each situation we faced.  Now that we have one cycle under our belts, we now know what to expect and what treatments work best to manage Hazel's side effects, so hopefully it will not be nearly as challenging during cycles #3 & #5.  Cycles #2 (which begins March 3rd) & #4 add a second infusion to the mix, so we will have to face some more trial and error.  Here are a few photos from the week:

     Since coming home, Hazel has felt so much better!  We walked through the door to our home and she just hit the ground running.  The doctors weren't kidding when they said once the infusion is done, it's done! The only thing she has been struggling with has been her appetite.  It took up until today for it to really start coming back.  She also began her course of Accutane, which requires her to take three pills in the morning and three pills in the evening.  I have been feeling very anxious about this step, trying to imagine how we were going to get a newly three year old to swallow six pills a day; but boy she takes these things like a champ!  She has just blown us away with her resilience and ability to adapt to new situations.  It has been so much harder for Aaron and I to constantly readjust to new normals every few weeks, but she and her siblings take these moments in their stride.  God has been so faithful to lift these children up and I will be forever grateful.  

Immunotherapy/Ch 14.18 Treatment (LONG POST AHEAD)

     It is 11:00pm and I am sitting in the all too familiar hospital window after checking in for the beginning of the first cycle of Immunotherapy.  Hazel begins her first infusion tomorrow and we ask you to lift her up in prayer as we face a new and unknown phase of treatment.  The feelings I have remind me of those that I faced before Hazel started chemo.  Even though we have an understanding of what this phase will entail, and an army of Neuroblastoma fighters who have forged a path ahead of us for us to look to; we have absolutely no idea how this will affect our little Hazelnut individually and this makes me quite a bit uneasy.  The one major difference between now and then, is that I have almost an entire year to look back on and see how my mighty God carried us through the most tough and grueling times of our life.  This allows me to have much more strength and confidence than I could have mustered last April.  2 Timothy 1:7 says "For God gave us a spirit, not of fear, but of power and love and self control", and I trust in His promise in Romans 15:13 "May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit, you may abound in hope".
     
     Now here is some information about Immunotherapy/Ch 14.18 Treatment (taken from Children's Neuroblastoma Cancer Foundation's website):

• Neuroblastoma can elude the immune system by using a number of tactics. Specifically, it is able to suppress the immune system’s capacity to identify and destroy cancer cells. If the patient’s body is to play a role in killing the neuroblastoma cells, the immune system needs some help in its ability to locate the cancerous cells. Helping the immune system find the neuroblastoma cells is the purpose of the ch14.18 therapy. 
• ch14.18 is a type of “monoclonal antibody” (mAb). The ch14.18 treatment is called an “anti-GD2” treatment because the ch14.18 antibody targets a substance on the surface of neuroblastoma cells called GD2. ch14.18 is a protein which has been designed to bind to the GD2. Once the ch14.18 binds to the GD2, it sends a signal to the body that tells the immune system a foreign substance has been found which needs to be killed. This then stimulates a response from the body’s own immune system to kill the neuroblastoma cell, 1 which is why the ch14.18 treatment is referred to as “immunotherapy.” 
• The “ch” in ch14.18 refers to the term “chimeric” and means that the antibody has been created from two different sources – in the case of ch14.18, mouse and human cells (25% mouse, 75% human). 
• ch14.18 is administered over 5 courses, approximately once per month over five months. It is given in conjunction with either GM-CSF or Interleuken-2 (IL-2), agents known as “cytokines” that work to stimulate the immune system once the ch14.18 attaches to any neuroblastoma cells. Each round of immunotherapy is followed by 2 weeks of Accutane treatment at home.
• GM-CSF is a daily shot that Hazel will receive with Cycles 1, 3 & 5.  These shots could make her experience things like: bone pain, feeling like she has the flu, tiredness and weakness and stomach upset.
•  IL-2 is a daily infusion she will receive for four days prior to and in conjunction with the Ch 14.18 infusions during Cycles 2 & 4.   
• Isotretinoin, which is usually referred to as “Accutane”, is derived from vitamin A. It encourages immature neuroblastoma cells to stop dividing and proliferating, and ultimately die.  Hazel will receive a two week course of Accutane following each cycle, and will receive one more two week course to serve at Cycle 6 of her Immunotherapy protocol.

     The most concerning part for us are the many side effects involved (so please pray specifically for these!!).  Unlike chemo, Hazel will finish each infusion and is expected to bounce back quickly and not have the long lasting side effects that would send us back to the hospital a week later (i.e. fever, infections, low blood counts, etc.).  That being said, DURING the infusions, she could experience quite a lot of misery.  Some of the likely side effects include:

• Pain (each child is started on a morphine drip before the infusion even starts, in order to try and stay ahead of the pain)
• Allergic Reactions
• Fever
• Constipation
• Nausea
• Blood Pressure Changes
• Fluid Retention
• High Heart Rate
• Flu like symptoms
• Fatigue
• Drop in platelet counts
• Possible affects to kidneys and liver (this worries me most due to the damage that has been done to these before during transplant)

     Here is what our inpatient schedule will look like (barring any complications) over the next several months:

• Cycle #1  2/9-2/14 or 15
• Cycle #2  3/2-3/7  Home for Saturday then back in 3/9-3/14 or 15
• Cycle #3  4/6-4/11 or 12
• Cycle #4  4/28-5/2 Home for Saturday then back in 5/4-5/9 or 10
• Cycle #5  6/1-6/6 or 7  **OUR VERY LAST INPATIENT STAY!!**
• Cycle #6  Accutane taken at home 7/7-7/20 **HOPEFULLY THE VERY LAST DAY OF TREATMENT!!

     If you have stuck with me this long, first let me say thank you!  Secondly, as you can see, these next several months will continue to be a challenge for our family and we will need a lot of prayers and support.  But it is also very exciting for us to say we are starting the very last phase of treatment and finally be able to see the light at the end of what has been a very dark tunnel.  We could not have gotten to this place without our God, our family and friends and all of you!!!

Scan Results

     Today was the day we received the results of all of Hazel's scans, and I have to say that our God is good!  We did not receive the coveted NED results we all were praying for, but we got as close to it as I think we possibly could have.  Our little Hazelnut's body is completely clear of cancer (praise God!!), but there was a small spot in her kidney that lit up on her MIBG scan.  Dr. Tran informed us that this small spot could either be residual disease, or actually just normal kidney uptake that is lighting up; and it is near IMPOSSIBLE to determine which it is.  So we do not have a definitive answer as to whether or not our daughter is cancer free, which is a bit frustrating.  However, the doctor's opinion is that it is much more likely that the small spot is normal kidney uptake and not cancer, and he is optimistic for her and very pleased with these results!  If it is residual disease, the spot is much smaller than any of her other scans and would more than likely be taken care of during Immunotherapy.  In addition, many of his other patients (which are also many of our good friends/family we have grown to know and love on this Neuroblastoma journey), have gone into Immunotherapy with quite a bit more disease than this potential spot on Hazel's kidney.  Furthermore, neuroblastoma is an extremely aggressive form of childhood cancer, that likes to progress when off chemotherapy and other forms of treatment, so that fact that Hazel showed absolutely no signs of progression is an extremely wonderful piece of news to hold on to! So overall, we are very encouraged and know that God is hearing the cries of our hearts.  I would like to spend some time to fill you all in on what is coming next, but we ended up waiting for two and a half hours for this appointment today, after having physical therapy in the morning; so we are  absolutely exhausted!  Please keep praying and I will post again very soon!