Princeton's Fight Against Neuroblastoma Cancer

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Friday, September 28, 2012

We have so many things to be grateful for.  Everyday we see the work of God's hands in our lives and in every situation.  He is faithful and loving, gracious and merciful.  God has blessed us more during this time than we could ever imagine.  He has blessed us with a testimony to share, new friends to love, He carries our burdens daily and we have been given a richer and more intimate approach to life and the people in it as well as a closer walk with Him.  We have been able to share Princeton's story with so many people and demonstrate God's love in a multitude of ways.  It is not through our own might and understanding, but through God alone that our weariness has grown into light. 

Princeton completed his 12th round of radiation September 10.  He did very well throughout the process and handling daily sedation.  The fields of radiation have such a precise targeted point that any movement will offset the targeted points to be radiated.  Therefore, Princeton had to be sedated to ensure he did not move during the treatment.  On the last day of his treatment, he rang the bell!!  Once the treatment was completed Princeton started to experience side effects such as diarrhea and some vomiting.  He also had a significant decrease in appetite. 

Last week Princeton had testing everyday to track the progress of his treatment and how well he is/has responded.  We are still waiting on final results.  However, the hearing test came back with a slightly lower score than the previous ones.  The doctor is recommending we look into getting Princeton a hearing aide.  Although he seems to hear well, he has lost moderate to severe hearing in higher pitch tones (birds, whistle, etc...) and slightly in lower tones in both ears.  We will not know for sure if he absolutely needs a hearing aide until we meet with a specialist.  Due to the fact Princeton is so young, he needs to be able to hear words properly to develop his speech accordingly.  If he was older and of a normal speaking age, perhaps it would not be as big an issue.  The hearing loss is a permanent side effect of one the specific chemo drugs Princeton received.  We are praying and believing Princeton will not need hearing aides and God would restore his hearing to a normal range.  All things are possible through Him to those who believe...and we BELIEVE!!!

Monday, Princeton had a bone aspiration (lumbar puncture).  This is where doctors take a small sample of bone and bone marrow from each of his hips. The lumbar puncture is used to test the bones and marrow for evidence of cancer.  Princeton had so much of the sedation medications during radiation, his body has developed an immunity to them.  He was given the maximum dose plus a little extra during the procedure, because he kept waking up and moving.  Please stand in faith with us that all of Princeton's tests would come back normal with no evidence of disease!  He has been doing so well and we continue to pray for his progress.  God has been so good to watch over Princeton and allow him to respond to the treatments as well as he has.

Monday, October 01,  Princeton will begin the last leg of his treatment.  We can hardly fathom...!  This next phase is termed, Immunotherapy (Chimeric Antibody), and it is used for Neuroblastoma patients.  It is given as a continuing treatment to maintain the response to previous treatments.  The drugs used are known to prevent an increase in the number of remaining Neuroblastoma cells.  Children diagnosed with high risk Neuroblastoma typically respond to treatment at first, however there is a high risk of the cancer coming back.  The immunotherapy is intended to reduce the risk of relapse.  This is a clinical trial and not part of standard treatment for high risk Neuroblastoma.  Neuroblastoma has a 54% chance relapse.  The Chimeric Antibody has statistically improved the chances of relapse to 35%.  He will undergo 5 rounds of intense Chimeric Antibody.  Princeton will be in ICU during the treatments due to the side effects.  The likely side effects consist of fever, low blood pressure, severe pain, swelling, fluid retention, loss of appetite, skin rash, etc.  There have been cases of sever reactions to the treatment, but we earnestly pray Princeton handles the Chimeric Antibody well.  The first round will consist of 10 -20 hours of infusion over the course of 4 days.  The time it takes to infuse is contingent on how well Princeton handles the pain.  He will be on a constant PCA drip (morphine).  The pain is caused by the way the Chimeric Antibodies attack the nerve endings and white blood cell maturation.  He will be hospitalized for a week for his first round of immunotherapy.  Please join us in prayer that Princeton would not experience unbearable pain, his reaction to the immunotherapy would be moderate and that he does not experience withdraw from the morphine.  During his bone marrow transplant, Princeton was on a constant drip of morphine for a month.  He went into withdraw when doctors tried to wean him off.  Due to the fact it is a much shorter time span (4 days) we pray he will not go through withdraw again. 

We are very excited for tomorrow!  Our loving and giving friends have graciously volunteered and orchestrated a 5k walk/run for our family in honor of Princeton.  We pray for a good turn out and that God would get the glory and look good. 
For anyone who wants to participate, it is being held at:
Fred Lee Park, 895 Emerson Drive NE, Palm Bay, Florida 32907
Registration starts at 8am and the walk/run begins at 8:30am.
There is a suggested donation of $15/person or $25/family with 100% of the proceeds going to support our family. 
Thank you in advance for all who have committed to participating in the fundraiser to support Princeton.
9:27 pm edt 

Sunday, September 16, 2012

BMT update and Radiation
We would like to apologize for not updating the site sooner, but to say the least, we have been exhausted traveling back and forth from Florida's coast to coast for hospital stays and doctor appointments.

Today, Princeton is 45 days post transplant.  We are thrilled with how well he is doing.  God has had mercy on Princeton and all he has endured thus far.  He is active and playing and really enjoys his time at home.  Princeton continues to be on a special low microbial diet and "isolation" until October 10.  We seem to have adjusted to his diet, but it does require some planning when we are at the hospital all day and on the road.  Everything he eats needs to be individually prepackaged or freshly prepared.  He cannot consume leftovers, restaurant food, raw fruits and vegetables, etc.  Princeton has to wear a mask every time he leaves the house including if he goes outside in our backyard.  He does well with keeping it on and not complaining.  Praise God!  This limits what we are able to do,though.  He cannot be around large crowds, school age children, most public places, and we have to limit the amount of visitors we have.  Anyone who travels by airplane to see Princeton has to wait 2 days before visiting him to ensure they have not contracted any germs from the plane.  This also means, we cannot get sick either as we are Princeton's primary caretakers. It is extremely critical we all remain healthy and limit our contact with others.  

Princeton is still not consuming enough fluids throughout the day.  For his size and age he should intake about 36 oz.  He has been taking in at most about 20 oz per day and many times less than that.  It is crucial he does not become dehydrated for the sake of his kidneys.  The high dose chemo was very hard on his kidneys.  If he were to become dehydrated, his kidney's would have a hard time recovering.  This being said, every Friday evening Home Health delivers a box filled with fluids, gloves, alcohol swabs, saline flushes, heparin flushes, iv lines, batteries and a $4000 pump for the week.  Each night we have to hook Princeton up to iv fluids for 12 hours.  

During the course of Princeton's bone marrow transplant, he underwent many, many things.  We praise God for his progress considering all he experienced especially at such a young, innocent age.  This is a portion of what Princeton went through:

     9 tests (X-rays, CT Scans, MIBG, etc.)
     1 surgery to replace one of his broviac lines
     4 IVIG infusions (used for boosting the immune system)
     4 days of high dose chemotherapy
     2 blood transfusions
     9 platelet transfusions
     13 days of ribavirin nebulizer treatments to treat the Parainfluenza
     8 days of fevers 101 and higher
     3 days on oxygen
     14 days of severe neutropenia (WBC 0)
     34 days of total and complete isolation 
     25 days on pca/morphine
     19 days mucositos (internal ulcers along the g track) 

Now that Princeton has completed the bone marrow transplant, we are onto radiation.  Princeton began radiation on Thursday.  So far he is doing well.  We have to be at the hospital by 8:30am Monday thru Friday for the next two weeks.  He is receiving 12 radiation treatments.  8 fields in his abdominal/adrenal gland area are being radiated.  We thank Jesus the doctors decided not to radiate Princeton's head, where he had a large mass.  They felt the risks involved with doing so were not worth the benefits of not doing it.  However, there will still be permanent effects of the radiation.  Due to the location of the radiated areas, Princeton's spine will probably be shortened by about a centimeter and his organs, although they will function normal, will be smaller than average.  Having radiation at Princeton's age can be hard, because he still growing and developing.  In addition to the permanent effects of radiation, his risks of future problems is also elevated.  Princeton will NEVER be in the clear of cancer.  The fact that Princeton has already had cancer increases his chances of developing a secondary cancer at some point in his life.  His chances of getting cancer again is 3 times greater than the average person.  With radiation added to his regiment his chances of developing a secondary cancer at some point in his life, probably in his later years, is increased an additional 5 times greater than the average person.  Therefore, the risks for secondary cancer at some point is very high.  However, we continue to believe according to God's word that cancer will not return a second time.  God has continually protected Princeton and we know He will continue to do so for the rest of Princeton's life.  Matthew 6:26-27,34 says, "Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them.  Are you not much more valuable than they?  Who of you by worrying can add a single hour to his life?", "Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own."  We pray Princeton will continue to do well with the radiation.  After receiving a few treatments he could experience nausea, loss of appetite, fatigue, etc.  We also pray Princeton will become accustom to the daily treatments and he will be able to hold still for the time it takes for the doctors to complete the radiation.  Each treatment is 15-20 minutes in length.  At this point, Princeton is sedated each morning before beginning the radiation.  It is not ideal to sedate him on a daily basis.  A mesh form was made and he received 3 permanent tattoos on his belly to keep him in the exact same position every time he is radiated.  However, the slightest movement Princeton makes could offset the designated areas to be radiated causing damage to other areas of his body.  That is the reason for the sedation.

Princeton continues to "limp" and put more force on his left foot and leg.  The doctor had an X-ray done to see what is causing this.  Although the X-ray showed no indication for why Princeton is limping and complaining of back pain, it did show some abnormalty.  Princeton had a lot of tumors in his hips, back, sternum, and in his bones overall.  Although the tumors responded well to the treatment, there is transparent areas in his bones where the tumors once were.  Essentially, he has hollow areas or holes in his bones.  Due to the fact the integrity of his bones has been compromised in specific areas he is fragile and runs the risk of easily fracturing weak areas.  This does not mean he cannot run and play like a 2 1/2 year old should, but we do need to be cautious.  Doctors will also have to watch these areas closely to make sure no tumors metastasize.  Considering he is still growing, his bones should mend themselves. We pray Princeton's bones will heal quickly and completely and there will be not further issues.  

Last week we celebrated Ocean's first birthday.  We are so thankful and blessed to have him.  He has been a trooper and joy during this time.  Princeton was diagnosed when Ocean was barely 4 months old.  By God's grace and mercy we have been able to keep Ocean with us this entire time.  When we first learned of Princeton's prognosis, we thought we were going to have to give Ocean to a family member to care for him or that he would be passed around from family to family.  It was heartbreaking to think we would be forced to hand over our newborn, so we could care for Princeton.  However, God allowed us to find a way to care for Princeton and Ocean at the same time.  In fact, we have been able to keep Ocean and Princeton together with the exception of the bone marrow transplant.  Ocean is sweet and kind, full of smiles and laughter and he loves his brother.  Ocean has gone through a lot too.  Unlike most 1 year olds who are eager to learn new things and explore, Ocean spent a majority of his first year hanging out in hospital rooms where he could not crawl around and be free to explore.  His days consisted of being held and laying in bed with Princeton.  God gave our family Ocean at the perfect time and knew he would bring us a plethora of joy and happiness in the midst of a storm.  We are so grateful Ocean is on track developmentally and has not fallen behind due to the circumstances.  Once again, God has had great mercy and shown His face.

We continue to thank God for each of you.  From the bottom of our hearts, we appreciate your continued prayers and support.  Just as a reminder, shirts in honor and support of Princeton can be purchased through August 31.  The link to purchase shirts is  Also, we have added new photos to the photo gallery.

Psalm 91:

Princeton dwells in the shelter of the Most High
   and he rests in the shadow of the Almighty.
Princeton will say of the Lord, "He is my refuge (protection) and my fortress (security, stronghold),
     my God, in whom I trust."
Surely he will save Princeton
     from the fowler's (hunter's) snare (trap)
     and from the deadly pestilence (disease, harm, evil).
He will cover Princeton with his feathers,
     and under his wings he will find refuge (shelter, protection);
     his faithfulness will be his shield and rampart  (defense).
Princeton will not fear the terror of night,
     nor the arrow that flies by day,
nor the pestilence (harm, evil) that stalks in the darkness,
     nor the plaque that destroys at midday.
A thousand may fall at his side,
     ten thousand at his right hand,
     but it will not come near him.
When Princeton says, "The Lord is my refuge (protection),"
     and he makes the Most High his dwelling,
     harm will not overwhelm him,
     disasters will not come near his tent.
For he will command his angels concerning Princeton
     to guard him in all his ways;
they will lift Princeton up in their hands,
     so that he will not strike his foot against a stone.
"Because I love Princeton," says the Lord, "I will rescue him;
     I will protect him, for he acknowledges my name.
Princeton will call on me, and I will answer him;
     I will be with him in trouble,
     I will deliver him and honor him.
With long life I will satisfy him
     and show him my salvation (protection from harm)."
4:18 pm edt 

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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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