Princeton's Fight Against Neuroblastoma Cancer

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Saturday, February 15, 2014

Scan Results
We will CHOOSE to continue to praise Him in this storm!  The scan results did not come back as we expected, but that's okay.  We are going to proceed moving forward in anticipation and faith.  Nothing is going to stop us from fighting.  We are going to keep standing firm on God's promise, "For the I know the plans I have for you, Princeton, declares the Lord, "plans to prosper you, Princeton, and not to harm you, Princeton.  Plans to give you hope, Princeton, and a future."  Jeremiah 29:11

Several tests are performed to determine if there is any traces of Neuroblastoma cells present.  They cannot always be detected if there is not enough cells clustered together (it takes at least 1 million) and no test is fool proof.  Therefore, what one test might detect, another may not.  The bone scan, MRI and CT all came back negative.  Praise God!  However, the MIBG (specific to targeting Neuroblastoma cells) came back positive.  For an MIBG scan, radioactive dye is injected into the body.  The dye then is known to stick to Neuroblastoma cells.  When this happens, the images from the scan show uptake or highlighted areas on the body where the cells are detected.  

A new spot was found on Princeton's head.  Specifically, it is located on the right vertex on the scalp/bone.  The blessing is that it has no effect on the brain.  Another praise moment!  At this point, the spot cannot be classified as a relapse until it can be proven that the spot is in fact Neuroblastoma.  The only way to be sure is through a biopsy.  Unfortunately, the spot is too small to biopsy.  Therefore, we need to wait for his next set of scans scheduled for 2 months out.  It is a bit unsettling to wait  2 months as this cancer is very aggressive and known to spread.  However, we have no choice but to wait and trust in the Lord that it will not spread.  Our prayer is that the spot will not show up on the upcoming scans or that is would grow to the absolute minimum to perform a biopsy.  We cannot treat it based on assumption.  Ideally, we would prefer to have another MIBG scan performed at one month, but it is not feasible unless there is a valid reason to do one sooner than 2 months.  Princeton has a follow up appointment in March to check his labs and  catecholamine levels.  These tests can tell us a lot if the numbers are off.  Catechoalmines are found in the urine.  Neuoblastoma cells put off a secretion found in the urine catecholamines.  The normal level is 13.  However, if the normal level is elevated, it can be a good indicator there are Neuroblastoma cells present in the body.  Princeton's current level is 16.3.  His elevation is not that high right now, meaning his level could be affected by a multitude of things not related to cancer.  However, if it continues to elevate, it is a good sign of cancer growth.  

We are praying the MIBG had false uptake and the scans will come back clear in April.  This does happen occasionally.  Sometimes things are meant to look a certain way to shake our faith and create fear.  We are not going to let that happen.  We must stand strong for Princeton and each other.  As we always say, "God has this."  God always says to let the worrying to Him.  Why waste time worrying about things we cannot control.  Instead, we are going to continue putting our energy into enjoying our family, making a difference in the lives of others, and fighting to find a cure. 

Lastly, Princeton was to have his port removed yesterday.  It stopped working and we were believing the scans would come back clear.  However, based on the concern of the spot on his head doctors decided to replace his port with a new one.  His surgery went well.  However, he was very saddened to have another port.  He is getting tired and beginning to understand what cancer is doing to his body.  It is heartbreaking to have him look in our eyes wondering why he has to keep going through this and there is nothing we can do to stop it. It is difficult and extremely painful to hear him say he does not want to do this anymore.  He wants to be a normal 4 year old playing and enjoying life, not fighting for his life.  

Please continue praying for the suspicious spot on Princeton's head. He needs a break.  Your prayers are working and we appreciate every single one.
1:45 pm est 

Monday, February 10, 2014

Prayers Needed

Prayers Needed

Written a minute ago

What a roller coaster this journey has been and a true, intentional walk of faith.  It has been almost 2 1/2 years Princeton has been battling this beast we know as Neuroblastoma.  We have had our moments of difficulty, but the blessings we have witnessed along this road have been astounding.  There is not a fathomable way we could have made it this far without hope and faith in God.  He is the solid rock we stand on.  

Being the parent of a child battling cancer is a daily mental game and emotional struggle.  We don't think about our child the way parents are supposed to.  Let me explain.  Princeton and Ocean are always together and always playing.  They are best friends.  There are days we wonder in our mind, how will Ocean handle it if something happens to Princeton?  It hurts beyond words to look at Ocean and know the pain and sadness he would have to endure.  Anytime we go somewhere for a family day, we think, "will this be the last time we will be together to enjoy this"?  Will our son, Princeton, be able to have his own family one day and raise children of his own.  By the way, we are told Princeton will never have children due to the chemotherapy he has received.  We plead with God every single day that Princeton would bury us and not the other way around.  No parent should ever have to bury their child.  It is extremely difficult not to think about how long he has before his body gives up fighting.  How will our lives change not having him around.  It is hard to explain all that goes through the mind of a parent with a child battling cancer.  However, even with all this said, we know the God we serve and we know He is in the business of working miracles.  We also know how our minds can wander and distract us from the present.  Although, these thoughts run through our minds everyday, we choose to celebrate each day of life we are given.  We don't know how long we have with each other, but we know we have today, and today counts.  Today we have an opportunity to make a difference in the life of each other and the lives of those around us.  God has placed us in this position with a purpose and we are determined to make Him proud.  At the end of the day, we want to hear, "well done good and faithful servant."

Princeton has scans this week to see how he has responded since finishing treatment in December.  He has not been on any preventative drugs since completing radiation December 19.  He has been complaining of belly and leg pain and tripping a lot.  When he relapsed in June he was also tripping often and complaining of leg pain.  We know how this looks, but as parents it is our responsibility to fight for Princeton with every last single ounce of energy we have.  No matter how tired we get, he needs us.  We believe this is another test of faith.  Princeton has a lot of odds stacked against him and scientifically speaking, he has a VERY poor prognosis.  

This is an abbreviated list of the odds working against Princeton:

     He was initially diagnosed at 2 years of age with high risk, stage IV Neuroblastoma.  The greater the stage and being older than 18 months decreases his chances of survival significantly.  
     Neuroblastoma is the third most popular cancer amongst children and often the most difficult to treat.  
     Neuroblastoma has one of the lowest survival rates of all pediatric cancers.  
     Every 16 hours a child with Neuroblastoma dies.
     There is NO known cure for relapsed Neuroblastoma.
     70 out of 100 Neuroblastoma patients have a period of remission.  Of those 70, 35 will relapse.  Out of those 35, 20 - 30% will go into remission a second time.  Most of that 30% will relapse again and not have a chance to grow up.
     There are no widespread FDA approved drugs or treatments available today designed specifically to treat Neuroblastoma.  Treatments include chemotherapy drugs designed for different types of adult cancers.  The chemotherapy is often too much for children's small bodies, causing permanent damage.  Doctors have known about Neuroblastoma for approximately 35 years.  
     Neuroblastoma accounts for 8% of childhood cancer cases, but is responsible for 15% of all childhood cancer deaths.  
     3 out of every 5 children diagnosed with cancer suffer long term or late onset side effects such as; heart damage, chemo induced secondary cancer, lung damage, infertility, hearing loss, growth defects and more.  To date, Princeton has hearing loss and supposedly infertility.  Of course, we pray for complete restoration.
    There is a LESS THAN 5% chance of survival for relapsed Neuroblastoma.

We are aware of the odds and the predicted outcome.  The thought of it hurts beyond words and makes us sick to our stomaches.  There is always a knot in our stomaches, a pressure in our chest and a battle to fight back streams of tears and fear.  However, we have no choice, but to trust in the Lord and His provision for Princeton's life.  He is not done with him yet.  We claim that 5% over Princeton's life and refuse to settle for anything less.  We pray his scans come back clear and he has been healed of Neuroblastoma once and for all.  

Psalm 118:15-21 says, "Shouts of joy and victory resound in the tent of the righteous:  "The Lord's right hand has done mighty things!  The Lord's right hand is lifted high; the Lord's right hand has done mighty things!"  I will not die but live, and will proclaim what the Lord has done.  The Lord has chastened me severely, but he has not given me over to death.  Open for me the gates of righteousness, I will enter and give thanks to the Lord.  This is the gate of the Lord through which the righteous may enter.  I will give you thanks, for you answered me; you have become my salvation."

Please join us in prayer that Princeton's scans would come back clear, that there would be no evidence of disease.  Please pray he would be the 5% who survives Neuroblastoma even after relapse.  We covet your prayers and support.  We greatly appreciate all the prayer warriors who uplift Princeton daily.  It really helps.  God hears every prayer no matter how eloquent it may be.  It is what is in our heart that matters. 
10:33 pm est 

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Our Little Hero



 Princeton was diagnosed with Stage IV Neuroblastoma, an aggressive form of childhood cancer, in December 2011 at the age of 2. At diagnosis, the cancer had metastizized and was found throughout his body.  He underwent 15 months of intensive treatment at Arnold Palmer Children's Hospital, Orlando Florida. His treatment consisted of 6 rounds of high dose chemotherapy, 10 surgeries, a stem cell transplant, 12 rounds of radiation and 6 cycles of immunotherapy. The treatment was grueling and difficult for Princeton's small body to handle. He finished treatment in March 2013. June 2013, Princeton relapsed. He again underwent 6 rounds of chemotherapy and 12 rounds of radiation. He went into remission in April 2014.We  know God is greater than cancer and will cure him of this disease.  We are reminded in Jeremiah 30:17 "But I will restore you to health and heal your wounds, declares the Lord."  God is the great physician and we know He will get the glory!  Thank you in advance for your prayers.

This website is designed to keep you informed on Princeton's progress and make donations to the family.  Treating Neruoblastoma is a full time job that requires long periods of hospital stays and travel.  Because this form of cancer is aggressive the treatment also has to be  aggressive.  The family appreciates your support and donations.

Donations can also be mailed to:

1676 Carbondale Ave NW

Palm Bay, Fl 32907 


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