Antibody Round 1

She did it... round one of antibody therapy is in the books!!  She did wonderful, better than I could have ever imagined!!!  Praise Jesus!!! We have a wonderful God!!

She battled some fluid retention the first night and then peed like a champ and ended treatment right around her starting weight... Yay Kidneys!!!  She had some pain the first day, mostly belly pain but the following days the pain was well managed!  Her morphine definitely made her a bit angry but nothing myself and Daddy couldn't manage!! She had sky high fevers (105.6) but was unaffected by them.  She actually seemed to be in the best mood when her fevers were the highest!!  The fevers weren't infectious in nature just a side effect of the antibody itself which made them pretty easy for her to deal with!!  However, it was definitely alarming feeling her that hot and seeing the reading on the thermometer!  She had a slight issue with low blood pressure but otherwise sailed through the treatment!  She was finished Thursday night around 9:00PM and since has felt a little cruddy!  She is battling some tummy issues and diarrhea!!  Praying that soon will subside!  We got home this afternoon and are hoping that she will perk right back up to our crazy little Addie Bean!  

So much to be thankful for!!!  Thank you Lord for seeing us through this first round, for keeping her heart and kidneys strong, for keeping all of the really severe side effects away and for keeping my sweet girl out of harms way!  Thank you Jesus for the wonderful PICU staff!  Thank you Team Addie for all the prayers, and for all of your love and support!!!!  Thank you Grandpa Darwin for taking care of my patients and a big thanks to both Grandpa Darwin and Grandma Carol for taking care of my girls while we were away!! 

Praying for some healing time at home.  Always praying for the cancer to never return... Crazy how anxious I feel about that starting this treatment, like in some way this could trigger things to grow, I was reassured this could not happen!! But as always please say a special prayer for her cancer to never return!!  Praying for a fun summer of quality family time!! 

Addie's next round starts the second week of June!!  In the mean time, we will keep up with the shots and start Addie on Retinoic Acid!  There are some yucky side effects that can come along with that such as depression and suicidal thoughts.  She has to swallow four adult size pills a day, please pray this goes well and she stays my positive "sweet" Addie Bean!! 

Go Team Addie!!!

Video Message from Mudd Advertising

Amanda & Reed,

My name is Tony Townsend & I work at Mudd Advertising w/ Tim. We’ve met a few times in passing but my wife & I are longtime fans/followers of Addie’s story on Facebook and hearing about her from Uncle Timmy. You may or may not remember that my daughter Aubrey is fighting Acute Lymphoblastic Leukemia (ALL) and receives treatment down in Iowa City as well, so your story is particularly warming to me.

I don’t know if I’ve ever told you in person, but your strength and compassion as parents is unparalleled. As a parent of a child with a life threatening condition, I have a lot of the same intense fears about the future & exultant joys in the small daily victories, and find myself in constant admiration of your optimistic & enduring faith.

When I read about your upcoming antibody treatments and the road you’re about to embark on, I made it my mission to make sure you were heading into battle with the biggest & most powerful ammunition in the world: Positivity

I know this process is looming and scary filled with a lot of frightening side effects. I’ve heard a lot in Aubrey’s journey that God only gives us what we can handle, but I’ve found that through the graciousness and thoughts of others that the journey is one that is easier not made alone. I don’t need to tell you to keep the faith, you’ve got that in spades! But what I can do, is assure you that the trip you’re making, you’re not going alone. Every treatment, every trip of uncertainty to Iowa City, every second waiting on blood results while crossing your fingers, & every time Addie is laying in the hospital bed &  looks at you with intense pain in her eyes and says “I love You”, I’ve had those same feelings and my heart goes out to you and your family.

Yesterday morning, I walked into the office determined to make my vision of positivity come to fruition for Addie, but with thought, this message is  in my opinion, moreso for the both of you. With Tim’s blessing /green light, I sought out volunteers to create a video message in our studio for Addie to pump her up for next week. The turnout was tremendous, and the execution was even better. What a thrill this video was to make! I hope this video brings you three things: 1) Comfort in knowing this journey isn’t one to make alone, 2) Motivation & Positivity heading into a long stretch of treatment, & 3) Fortification in your trust and faith in God & knowing things are going to be as they should.

Please enjoy the video on the link below, and remember to show Addie. Again, as Aubrey’s parent, I feel that this video is as much for you as it is for Addie. So much are the parents forgotten in these situations, please accept my love and admiration for you and for your strength in your journey as parents.

Here’s the link:  https://vimeo.com/studio5mudd/review/127612784/958cebef75

With deepest hopes & prayers,

Tony Townsend

Antibody Therapy

What is Antibody Therapy?! Hopefully this information will help those that are interested in understanding what exactly Addie's next phase of treatment entails.

Here is some information about Immunotherapy/Ch 14.18 Treatment (taken from Children's Neuroblastoma Cancer Foundation's website) I borrowed this information from another blog that I follow... Our Little Hazelnut, that mother is incredibly uplifting and so talented in her blogging and I hope she doesn't mind, I thank her for her encouraging words and faith!!

• 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 Addie will receive with Cycles 1, 3 & 5.  These shots could make Addie experience things like: bone pain, symptoms of the flu, tiredness, 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. These rounds are the most intense and likely the most life threatening for Addie.  We will be inpatient for two weeks for these two cycles, in order to closely monitor Addie Bean.

• 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.  Addie will receive a two week course of Accutane following each cycle, and will receive one more two week course to serve as Cycle 6 of her Immunotherapy protocol.

     

Antibody therapy is a much different treatment than chemotherapy.  I prefer to call it "The Beast" it is going to knock Addie's socks off but it also knocks the socks off of any remaining neuroblastoma cells that are trying to hide.  Unlike chemo, Addie will finish each infusion and is expected to bounce back quickly, her blood counts are not drastically affected and her immune system remains "normal".  That being said, DURING the infusions, she will likely be in pure misery.  Neuroblastoma is a nerve cancer and when her body is killing these irregular/immature nerve cells it will be painful.  The location of the pain is typically in the abdomen, causing a severe stomach ache, but the pain can be all over her body and can also be more neurologic.  Due to the pain and numerous other things, Addie will likely not have an appetite and is expected to not eat very much while we are inpatient (I am doing my best to fatten her up as much as possible now)!  Addie will be admitted to the PICU for all of her treatments to help manage her pain and also to help manage any of the acute and potentially very severe side effects.  

Common side effects of Ch14.18 include:

• Allergic Reactions:  Rash
• Fever:  typically very high fevers
• Constipation
• Nausea:  lack of appetite
• Blood Pressure Changes:  both high and low
• Fluid Retention: extra concerning for our girl who has shown she doesn't tolerate fluid overload well.  
• High Heart Rate
• Flu like symptoms
• Fatigue
• Drop in platelets

Severe side effects of Ch14.18 include:  SCARY, SCARY and more SCARY

• Severe allergic reaction, specifically in the mouth and throat which would make it hard to breathe. 
• Irritation of the small airways in the lungs that causes coughing and wheezing. 
• Seizures 
• Rapid heart rate.
• Chest pain that could mean heart damage.
• Sudden stopping of the heart or breathing.
• Vascular (capillary) leak syndrome that can result in dangerously low blood pressure. This can lead to organ failure and must be treated immediately. Symptoms include pale skin, a fast weak pulse, fast shallow breathing, low total blood amount, and low blood pressure... We experienced this during transplant which likely lead to all of Addie's issues... PRAYERS, Prayers, and more Prayers PLEASE!
• Severe rashes which can cause a breakdown of the skin and damage to mucous membranes.
• Bleeding disorder.
• Swelling in the back of the eye caused by increased pressure in the brain.
• Damage to the optic nerve.

Severe side effects for IL-2 include:  EVEN Scarier

• Severe allergic reaction causing difficulty breathing, drop in blood pressure, and irregular heart beat. 
• Heart attack or severe pain in the chest (angina). 
• Inflammation of the heart muscle that could lead to heart failure. 
• Severe drop in blood pressure.
• Decrease in the ability of the blood to clot. 
• Bleeding that can occur in the head, stools, nose, urine, and other part of the body. 
• Seizures. 
• Loss of consciousness (coma). 
• Inflammation of the colon leading to diarrhea. 
• Inflammation of pancreas causing pain.

I am sure after reading through that list you are just as sickened and anxious as me and wondering what more does this little girl have to go through?!! Neuroblastoma, as I have said before, is a killer and it takes an entire bomb squad to knock it out, and even that sometimes doesn't keep it away!). I found great comfort in this statement from the CNCF Neuroblastoma Handbook... 

Most patients experience some side effects during the ch14.18 treatment, although generally, these occur only during treatment and subside soon after it concludes. Some patients will “perk up” within hours of the completion of the infusion whereas others may take a day or more to feel well again. To date, there are no known long-term side effects associated with ch14.18.

Praise Jesus for that!!!

     Our Summer is planned for us, our inpatient schedule is below.  We will do our best to enjoy every single moment of being home and being a family.  I feel so incredibly blessed that we have had so much time at home to just enjoy eachother.... some cancer families never get this chance, the chance to just breathe and be together and we have had almost 5 months.  Many prayers please to carry Addie through this next phase of therapy.  This treatment is intense but it truly has changed the outcome of Neuroblastoma...  Our little Addie Bean needs everything she can get to beat this awful disease.  I pray that she will make it through all five cycles victoriously and unharmed.  I pray that she will sail through the treatment and that she will still be able to have a fun summer with her sisters... She turns four in just a month :)  I pray that those tubes come out in September and we will never have to deal with cancer again... that she will be forever done with cancer treatment and at that point she will only be known as a cancer SURVIVOR.  I pray for her sake she gets to go to CANCUN, that is all my little girl wants to do, she asks me almost daily... "Mom, when my tubes come out, my go to Cancun?!"  Please Jesus let me take my girl to Cancun cancer free... Let it be a celebration of her victorious defeat of Naughty Randall!  I pray that when our guard is down and as we move farther away from treatment, You Lord are watching over Addie and keeping her safe from harm.  That You will continue to keep her cancer free!  I pray that her body can withstand a few more months of torture and that she will come away from all of this unscathed!!  Please Jesus let us always live with our eyes open and our hearts filled with you, let Addie's story bring glory to Your Name!!! 

I read one Dadcologist's blog and he wrote that no doctor can tell you what the outcome will be for your child with Neuroblastoma, they just don't know.  Cancer, especially childhood cancer and specifically Neuroblastoma, is completely unpredictable and each patient and each case is entirely different... what works for one won't work for the next.  I found comfort in this, the odds are definitely stacked against us and Addie's diagnosis was as poor as they come but SHE can do it, she can BEAT this and we have the ONE that really matters carrying us through it all... Thank you Jesus, praise God!!!

Addie's treatment schedule:

• Cycle #1  May 18-22 PICU, May 26 CLINIC

• Cycle #2  June 8-12 3 JCP, June 15-19 PICU, June 22 CLINIC

• Cycle #3  July 13-17, July 20 CLINIC, Week of July 27 possible imaging

• Cycle #4   Aug 3-7 3 JCP, Aug 10-14 PICU, Aug 17 CLINIC

• Cycle #5  **Last inpatient stay** Sept 7-11 PICU, Sept 14 CLINIC... HOPEFULLY Tubes can come OUT!!!
• Cycle #6  Accutane taken home
• November... MORE Imaging

Thank you all for your continued support and your prayers for my girl!! We need you now and always... Please lift my girl up in prayer and carry her through this next phase of treatment!!

So much love from the Brenden clan