Hazel Embarks On 6 Month Journey

Immunotherapy Treatment

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!!!

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