Fighting Tiger has 2 more rounds of ch 14.18 antibody and then he finishes inpatient treatment on June 24th. He’s going to get his broviac removed after the last round so he can enjoy his summer in the water and is electing to get pokes and IVs for the remaining lab draws and scans. We have a home treatment regimen through August 10th and then he is officially done with treatment and will be in 8th grade at middle school in the Fall!!!! Thank you all so much for the support (financial and emotional!) on this 16th month journey. We know that a fierce positive outlook, faith in miracles, and your support has brought us this far! It’s with a healthy dose of reality that I acknowledge the unfavorable histology of Jackson’s disease puts him at higher risk for relapse and we can’t wait for relapse and risk subjecting him to more toxic chemotherapy, MIBG and radiation. We’ve located a Phase II clinical trial at Memorial Sloan Kettering in New York designed to prevent relapse. This vaccine trial is one week of scans and 7 shots over the course of a year so there won’t be much disruption to his daily life. There have been over 50 kids enrolled in the Phases I and II and they are seeing favorable results, especially in kids like Jackson who are in first time remission. Surprisingly the airlines don’t offer discounts for medical needs like our family’s so we are asking friends and families to donate spare miles to Jackson’s Advantage account as we need to purchase 18-20 round trip tickets to New York over the course of the year. If you have any spare miles please use the Share Miles feature at AA.com to give Jackson miles. His account is 799HXF8. There is a small fee which they won’t waive but it much lower than the Buy or Gift Miles fees. Thank you all for the love, prayer, support, positive light, healing energy, messages, texts and notes as it keeps us strong. Fighting Tiger knows he won! XOXO

The Anatomy of a Cancer Diagnosis

“Sometime you just have to accept the fact that certain things will never go back to how they used to be.”

We are 10 ½ months into Fighting Tiger’s 16 month treatment plan and so grateful for remission.  Sixteen months sounds like a long time, and believe me it is, but we are among the lucky ones.  Jackson’s disease responded to the various treatments according to the standard protocol which is exceptional for cases like his with a nasty gene amplification and his “advanced” age (most children with Neuroblastoma are 3-5 years old).  Many children never make it this far and we were “fortunate” to be in bone marrow transplant during Christmas.

When Jackson was first diagnosed all I could think about was making sure he made it through cancer unscathed and back to “normal.”  Once the severity of the diagnosis set in I realized that the side effects of all the treatment made it unlikely that things would ever go back to “normal.”  My focus turned to hoping that he survived. As we progressed through treatment my prayers shifted from long-term to short-term and focusing on remission.  I wanted so desperately to make it to remission so he would have a chance.  And he did it.  We got the news on Friday, November 13^th.  Thirteen is our new lucky number.

Since the declaration of “no evidence of disease” or “remission” Jackson has had a bone marrow transplant, 12 rounds of intense abdominal radiation and now we are beginning antibody immunotherapy. Treatment does not end at remission but there is light at the end of the tunnel.  And while remission is a magical thing, Neuroblastoma is a high relapse disease so we will do everything to make sure it never comes back (yes, Jackson is going to start drinking green smoothies whether he likes it or not!)

I will never understand why this happened to us or any other family but I’m looking on the bright side.  I’m grateful for my new circle of friends that includes other families that are managing this same diagnosis.  We support each other; we understand; we laugh; we cry; we celebrate.    Friends and the community have stepped in time and time again to keep our spirits high and take care of us.  My boyfriend comforts me when I burst into tears walking down the street because I see a 5-year old boy that reminds me of Jackson.  I know I’m sick of cancer and he must be too but he never stops supporting me.  This is unfair for siblings too yet Jackson’s sister Cailin has matured and developed the skill of empathy at a young age.  I’ve learned that just when you think you have nothing left a power deep within emerges to give you strength because you are a mom and that’s what mom’s do. 

Most of all I’m impressed with Jackson.  He is enduring what the doctors tell me is the most grueling treatment protocol there is, yet he still smiles for the camera and says “please” and “thank you” to the doctors and nurses (most of the time J).  He told me yesterday that he thinks cancer has changed him because he can no longer watch violent movies or people suffering (my fault – we were watching Rocky IV because I was trying to find something motivational!).  That’s only the beginning of how cancer has changed him and I’m grateful for the future to see what else this exceptional and brave young man will conquer.

I’ve stopped wondering or hoping when things will go back to “normal.”  In fact, I no longer want them to.  

Fighting Tiger Update! Things were so busy since my last update that I fell behind in keeping everyone up to speed with Jackson's progress.  We were admitted for Bone Marrow Transplant on November 30th.  Jackson received 6 days of chemotherapy, one day of rest, and then a stem cell transplant.  We spent Christmas and New Year's in the hospital and were discharged on January 4th.  Unfortunately things have been very rough since transplant and Jackson is unable to eat or drink despite all the anti-nausea medications.  We've started out patient radiation but he was admitted last week because of his significant weight loss.  We know things will turn around soon and it's just a matter of time before he's gaining weight and chowing down.  Last week Buster Posey stopped by to visit and Jackson has never smiled so big!  Thank you all for the love, support, prayers, messages, comments, positive light and healing energy.  Fighting Tiger's got this!

We believe in Miracles! I'm beyond thrilled to share that Jackson is in Remission!  We had disease response evaluation scans and tests on Friday and got the full results today.  His scans show a curie score of 0!  A curie score measures how much neuroblastoma is in the body. Jackson was a 19 at diagnosis and a 10 after the 4th chemo.  He since had a tumor resection surgery, more chemo, and a MIBG treatment and now his score is 0!  We just got the final bone marrow results and there is no neuroblastoma! We still have bone marrow transplant and antibody treatment and will be in treatment for 7-8 more months.   Thank you so much for all the support, financial and emotional, on this journey!  The fundraising is helping us pay for the home health care so I can work and keep our health insurance.  Thank you!

Quick Fighting Tiger Update!  He's been home from MIBG radiation since Tuesday.  MIBG went well and he was a total trooper in isolation for 8 days!  We have disease response scans November 10th and 11th.  Based on those scans the doctors will let us know if we've killed enough cancer to move on to Bu/Mel chemo and stem cell transplant in December.  In the meantime, we head back to UCSF tomorrow for a feeding tube placement (will give Tiger the strength and weight he needs for this fight!) and a stem cell rescue.  Thank you all so much for the prayers, support, messages, positive thoughts, healing energy and words of encouragement.   

A little blurb I wrote in honor of Childhood Cancer Awareness Month......

Before April 2015, I couldn’t have told you when Childhood Cancer Awareness month was; in fact, I had little visibility to the fact that children had cancer.  My mom and dad are both cancer survivors, and I’ve lost two aunts to it.  But children?  Sure, I’ve seen fundraisers with pictures of adorable, skinny bald headed kids, but like a lot of other parents out there, it never occurred to me that it could be my child. It never occurred to me that I would need a fundraiser because the cost of travel, time off from work (if you are even able to keep a job), and treatment can add up in a blink of an eye. 

And then it does.  It happens. All of it. An ache or pain that doesn’t go away morphs into a terrible diagnosis.  For us it was Stage IV High-Risk Neuroblastoma.  Suddenly, my child became that adorable skinny bald headed kid.  Now I have insight into the pain and suffering that causes the weight-loss and baldness.  Now I have a date of diagnosis engrained into my mind like other parents who have a child fighting cancer. 

Life is divided up into two segments: life before April 22, 2015 and life after April 22, 2015.

As I write this, my son and I are sitting in Room 15 on the 6^th floor at UCSF Benioff Children’s Hospital.  This is our eighth hospital stay in four months.  While we live in Reno, all of the treatment is at UCSF because Reno doesn’t have the doctors or facilities to treat most forms of childhood cancer.  My son, Jackson (aka “Fighting Tiger”) is enduring his fifth round of chemotherapy like a champ.  This treatment in addition to the other four other rounds of chemotherapy, a stem cell harvest on his 12^th birthday, and a grueling 17 hour tumor resection surgery that left him without a kidney sometimes feels like all we can bear. 

The cocktail of drugs in this fifth round is leaving him extremely nauseated so instead of working, I’m reading him The Complete Sherlock Holmes by Sir Arthur Conan Doyle to distract him.  I could have thought of a hundred other books that would be easier to read to him than an 1100+ page book written in the late 1800s but as a parent you do whatever it takes to make your child feel better so 19^th century old-English it is.

After diagnosis your life changes dramatically.  Your set of friends expands to include other parents that are enduring what you are enduring.  You spend more time on the phone with your pediatric oncology nurse than your best friend or your mother.  You become a nurse and a pharmacist. You learn how to flush a Broviac every day and draw blood work.   Days in the hospital can morph into weeks and you lose track of what day (or sometimes what month) it really is.  My dear friend Erin told me one day while our boys were in the hospital at the same time that taking a shower in the morning makes a difference.  Thanks to Erin, I reminded myself to take a shower this morning. If you have other children like Erin and I do you are suddenly relying on friends and family to help raise that child because you are so stretched physically and emotionally; everyone chips in because they want to help.  

Even though this childhood cancer diagnosis seems like the most unfair tragic nightmare that could ever happen, I’ve also experienced the most overwhelming generosity from others.  Neighbors have maintained my lawn and gotten my mail.  Friends have stocked my refrigerator after a 3 week stay in the hospital. They’ve feed my family week after week.  Friends have taken my younger child on a moment’s notice when my older child has ended up in the hospital unexpectedly. 

Strangers have made donations to your fundraising campaign just because.  The checker at the grocery store has hugged me when I’ve stood there with tears in my eyes. Everyone, and I mean everyone, wants to help.  And you let them because it makes your life easier and your heart swell.  You feel supported.  You have hope.  You are not enduring this alone. 

I’m going on and on about how this affects me because it breaks my heart to write about how it affects Jackson.  How angry it makes me that my sweet and kind 12-year old son is missing 7^th grade with his buddies and baseball to endure a 14-month treatment plan.  But I get my strength from him.  He knows he’s going to beat it and it’s just a matter of time until we have a scan that shows “No Evidence of Disease.”   Jackson gets through this with the support of his friends and family; the playdates at home when he’s feeling well enough for visitors and the connection with his friends playing multi-player video games when he’s not. 

There are silver linings.  I didn’t appreciate how much I loved my children until faced with this challenge.  I had no idea how much support could flow in from friends, family and strangers.  I didn’t realize how brave and strong Jackson was until I watched him endure treatment with a smile on his face.   Most 12-year old boys are pulling away from their parents and venturing out into young adulthood.  Right now my son is soothed when I rub his back or kiss his forehead.  In his hospital room I roll my bed alongside his and we sleep (when the nurses aren’t waking us up!) holding hands.   While everything about childhood cancer is unfair, I have the chance to cherish my little boy a little longer.

Fighting Tiger Update! Finishing up the fifth round of chemo and hoping to go home today. We met with the doctors to discuss the big next step - MIBG therapy. We will be admitted on 9/21 for up to a week. More to come but if you're curious google it. He will he injected with a radioactive iodine molecule that is taken up by the nueroblastoma cells and delivers radiation to the cells and kills them. This treatment should get rid of the cancer in his bones and bone marrow. We are all looking forward to this next step!

Lots of progress to report!  The Tumor resection surgery on August 3rd was a success.  The surgery was more extensive than planned and lasted 17 hours but they got most of the tumor out!  Jackson was in ICU for several days but has finally been moved to the oncology floor with the doctors and nurses that are familiar to us.  I'm grateful for the surgeons' skilled hands every morning :)  After he gets out we will head home to recuperate for a few weeks and then back to UCSF for his 5th chemo.  He also has the MIBG treatment coming up which we are very excited about because it will remove the cancer from his bones and bone marrow.  He's been a trooper through all of this and so have our friends and family.  Thank you all for financial and emotion support - it's working!  Fighting Tiger is fighting strong.

After 5 tests last week we got good news! Jackson's curie score (number used to objectively state how much neuroblastoma is in the body) has dropped from 19 to 6! His main tumor has decreased in size by at least a third! We are meeting with the surgeon tomorrow to discuss the tumor resection surgery scheduled for July 23rd. More progress. Thank you all so so much for the continued support, love, prayer, texts, comments, and messages. We got this!

Big week this week!  We are off to UCSF for several scans to determine the success of the first 4 rounds of chemotherapy.  Jackson will have a MIBG scan, two CT scans, a MRI and a hearing test.  These scans are consider a disease response evaluation and we are looking forward to good news!  The surgeons will use the abdomen MRI for tumor resection surgery next week.  The surgery is to remove what's left of the abdominal tumor.  Jackson is in great spirits and looking forward to moving forward.  Thank you for the continued support, prayers, comments, positive thoughts, healing energy, notes, texts, and messages.  The support means so much to us and is keeping everyone strong!

We are getting ready for Round 4 of Chemo at UCSF starting tomorrow.  Jackson has enjoyed his time at home and especially seeing friends and visits from family.  Grandma made his favorite meals over and over again and he's eating a lot!  We head back to UCSF mid-July for MIBG scan, CT scan and MRI to see how much of the cancer has vanished from the chemo.  July 23rd is a big day as they will operate to remove as much of the abdominal tumor as they can.  Thank you so much for all the support, prayers, thoughts, well wishes, texts, emails, notes and FB comments.  We are staying strong and Fighting Tiger is beating this!

We are home from Round 2 of Chemo and Jackson is in great spirits.  We are trying new things to manage the nausea including peppermint oil in a diffuser.  Jackson is starting to have more cravings so I run to the store to get whatever he wants!  Right now it's chili.  We've started a daily shot regimen of Nuepogen to prepare for the stem cell harvest next week.  Also, I can draw labs from the Broviac so no more clinic or nurse visits.

Thank you so much for all the support, financial and emotional!  Every comment, message, text, voicemail, note, prayer, thought and smile keeps us strong.  I know Fighting Tiger is going to beat this and so does he!

#fightingtiger

€‹#remission2015

Day 2 of Round 2 of chemo!  We are shrinking that tumor by the minute.  Jackson is very nauseated so I'm relieved he is sleeping so much.  We are working on legos and getting visitors.  Hoping to come home on Monday.  Back on June 4th for our stem cell rescue.  Moving right along and blasting this nueroblastoma out of his body!

May 20th - Fighting Tiger Update!  

We are bald and adorable!  Jackson went to baseball practice yesterday and said hello to the team which really lifted his spirits.  And he got a bead of courage from mom because that was no easy task.  We are still managing naseua and trying to keep him nourished and hydrated.  We will ask the doctors for a patch or something stronger the next go at chemo.  We leave in the morning for UCSF for Chemo Round 2.  We will be there until Tuesday, then home for 3 days and back on Saturday to begin the stem cell harvest.

Thank you for the continued financial and emotional support!  The visits, voicemails, texts, prayers, FB comments, positive thoughts, healing energy, notes, hope and faith is keeping us STRONG!

#fightingtiger

#remission2015

May 15th - Fighting Tiger Update!

We are still home and resting comfortably.  Jackson's tumor pain is completely managed and the only challenge we have right now is eating!  Anything he asks for he gets so mom has been busy in the kitchen along with a trip to Doughboy Donuts and Blind Onion Pizza.  He is no longer neutropenic (Absolute Neutrophil Count below 500) so he is going to see a few friends this weekend to lift his spirits!  Jackson's baseball teams (Washoe Little League Majors Giants) put together the best care package full of books, notes, pictures and gift cards that made him smile soooo BIG!

We leave on Thursday, May 21 for Chemo Round 2.  Following Round 2, we go back the 30th for Peripheral Blood Stem Cell (PBSC) Harvest for using during the Stem Cell Rescue following Chemo Round 5.

Thank you for the continued financial and emotional support!  The texts, prayers, FB comments, positive thoughts, healing energy, notes, hope and faith is keeping us STRONG!

#fightingtiger

€‹#remission2015

May 11th - home for 10 days!  I'm thrilled to report that we got home easily yesterday and Jackson is excited to be home.  He is neutropenic so unfortunately no visitors but we will let his buddies know once he's ANC (Absolute Neutrophil Count) is back up.  Everyone who knows me knows I'm a complete nerd so now I'm learning everything there is about Nueroblastoma (still trying to spell it correctly) and Jackson's treatment plan.  It's spread out over a year so I will give you the preview in bites because I'm still learning myself.

Chemo Round 1 - was 2 drugs: Cylophosphamide (an alkylating agent that disrupts DNA in cancer cells, preventing reproduction) and Topotecan (a derivative of a plant alkaloid and interferes with an enzyme involved in maintaining the structure of DNA)

Chemo Round 2 starts on May 21 and will be the same as Round 1.  Following Round 2, they will perform a Peripheral Blood Stem Cell (PBSC) Harvest for using during the Stem Cell Rescue following Chemo Round 5.

Thank you so much to everyone for the support both financial and otherwise.  This is definitely a life changing journey that impacts everyone in our lives and we are becoming so much stronger because of it.  It's not fair and shouldn't happen to anyone but are making lemonade out of lemons and so grateful for the support.

#fightingtiger

#remission2015

Thank you everyone so much for the support!  Thank you notes are forthcoming :)

We are still at UCSF and hoping to come home tomorrow in between chemo treatments.  Jackson is transitioning from IV pain medicine to oral pain medicine so he can come home.  We've received so much love, support, healing energy, prayers, thoughts and good vibes that I can't thank you all enough.  More details on treatment plan as it comes along.  Anyone with interest in Nueroblastoma can find out more at nant.org.  We are in great hands at UCSF and Jackson will go into remission.

#fightingtiger

#remission2015