Princeton has had an intense week of testing.  All the tests he had done previously to prepare him for the bone marrow transplant had to be repeated due to the time lapse of when Princeton last had chemo and now.  Tuesday, Princeton's double lumen broviac line had to be replaced.  It had a blockage and a slight infection.  It was a surgical procedure, but praise God they were able to renter the site they previously used.  Yesterday Princeton still tested positive for the Parainfluenza virus.  Therefore, he received another IVIG infusion, an immune booster.  It seems his symptoms are improving.  We are praying when Princeton is retested for the virus Tuesday, it will come back negative and we can move forward with the bone marrow transplant procedure next week.  It is urgent he get the transplant as soon as possible.  We praise Jesus, the test results that have come back thus far do not indicate any progression in the cancer.  We continue to trust in the Lord with all our hearts and give Him the praise each step of the way.  He is faithful in all His ways.  We pray the remaining test results will also show no progression.  Thank you for all of your prayers and continuing to read the updates. 

Princeton is in need of your prayers immediately.  We were given unexpected news yesterday when we went to Arnold Palmer to check the status of his virus, Parainfluenza.  Our hopes were that he would test negative for the virus and that we would be in St. Petersburg today preparing for the bone marrow transplant.  However, Princeton still has the virus and the bone marrow transplant has been delayed again another 1-2 weeks.  The danger in this is that the cancer is very aggressive and susceptible to progressing.  He has not had chemo since April 24, therefore, he has not had anything to treat the cancer that is still remaining.

Due to the nature of Stage 4 Neuroblastoma, the treatment plan is very stringent.  It is preferred that the transplant take place within 4-6 weeks of the last dose of chemo.  If necessary it can be pushed to 8 weeks.  Princeton will be 8 weeks out from his last chemo treatment on Tuesday.  He is now outside the treatment plan guidelines, putting him at an even greater risk for the cancer to progress.  In addition, Princeton will need to repeat all the testing he had done in preparation for the transplant.  This includes CT scans, MIBG, bone marrow biopsy, Echo, EKG, etc.  It takes about a week for all the testing to be complete.  This involves more subjection to radioactive dye and sedations. The testing needs to be repeated to determine if and how much the cancer has progressed.

Princeton is also having difficulties with his double lumen broviac line. One of the lines is not allowing fluids to pass through like it should.  It appears it is not functioning properly due to a clot in the line.  This will require surgery to replace the line.  It is pertinent both lines of the broviac be fully functioning for the bone marrow transplant. 

The doctors at Arnold Palmer and All Children's Hospital are perplexed by Princeton's situation.  This is a rare instance that a child be outside the normal treatment plan and that someone would contract a virus this close to transplant.  So many variables are in play at this point, but they are committed to keeping Princeton's best interest in mind.  We pray for wisdom for the doctors and that God would lead them in the right direction for Princeton's case. 

We are scheduled to be at All Children's Hospital in St Petersburg Monday.  They will test him for the virus to see how they should proceed.  We are believing in a miracle.  Again, another opportunity for God to shine His light.  If Princeton tests negative for Parainfluenza, he will be admitted to the hospital to start the tests.  This will take about a week, then he can start the transplant process. We are expected to be at All Children's Hospital for about 7-8 weeks. On the contrary, if Princeton tests positive for Parainfluenza Monday, he will need to be tested on a weekly basis until he tests negative.  This would only put him at greater risk for complications. 

God's timing is SO perfect!   Throughout this journey we continue to see God's grace and mercy over and over again.  Princeton's virus was detected on Wednesday morning, the morning he was scheduled to be admitted to All Children's to begin chemo and the bone marrow transplant process.  We casually mentioned it to the doctor after Princeton coughed a couple times that morning and a slight, mild runny nose.  The doctor assumed it was no big deal as did we, but he took a culture for extra precaution.  Praise God!  Wednesday afternoon, after being admitted to the hospital to get everything started, the doctor came in the room to tell us Princeton had Parainfluenza and they needed to put a hult on everything.  This is very critical, because had Princeton been given chemo with the virus present, it would have developed into pneumonia.  Things would  have turned fatal 2-3 weeks after receiving chemo, due to the fact pneumonia cannot be treated and Princeton would have absolutely no immune system to fight it on his own.  We thank God for allowing us to catch the virus in the nick of time.  God is always on time - never too early and never too late.

We are believing in God as the Mighty physician and healer.  We know God can clear Princeton of Parainfluenza by Monday morning.  Nothing is too hard for Him.  We are standing firm in our faith that he will get all of his tests done next week and start the transplant process the following week.  We are also firmly believing the cancer has not and will not progress over the next week or two.  God allowed this hiccup to happen at this moment for a particular reason that only He knows.  Therefore, we are confident in placing our trust in Him.  We ask that you would join us in faith and fervent prayer on Princeton's behalf that the virus would clear up by Monday and that he may be able to proceed unto transplant without any difficulties. 

We apologize for not being more diligent in posting updates.  Hopefully we can start posting more frequently in the next coming weeks and months ahead. 

Here is an overview of the past few weeks.  May 22 we went to All Children's Hospital in St. Petersburg, FL to have Princeton's double lumen broviac line put in.  This was a surgical procedure.  The broviac line is 2 IV lines that are threaded through one of Princeton's main blood vessels down to his heart.  The IV lines protrude to the exterior of his chest.  This allows doctors additional access to administer medications that otherwise cannot be given through the same IV simultaneously.  Also, Princeton's veins are not in good condition at this point due to the amount of chemo he has had.  It is very difficult to give him IVs interveinously.  The broviac line will stay in place until after the bone marrow transplant. 

The results from the tests Princeton had done reveal he has had a partial response to the treatment thus far.  A scale is used to determine how well a patient is reacting:  PR= partial response, GPR=good partial response, and VGPR=very good partial response.  To be considered a good or very good partial response the cancer has to weigh in at a >90% improvement.  Princeton has had an 88% improvement.  This is still fantastic and we thank God for the response he has had.  However, the results indicate Princeton still has cancer cells in his body secreting enough chemicals to determine there is active Neuroblastoma.  Good partial response is a prerequisite to getting a bone marrow transplant.  However, considering Princeton is only 2% away, the doctors feel he would be fine to move forward with the transplant. 

As mentioned previously, Princeton has responded to chemo therapy much harder than the average child.  Therefore, going into transplant the doctors decided to pre-medicate him with Palifermin.  This is a medication given through an IV used to reduce the severity of mucisitis.  The chemo he will be receiving as part of the transplant regiment is 3-7 times stronger than what he has received to date.  Due to the nature of the chemo, it completely destroys the bone marrow.  Princeton produces good bone marrow, but it is the chemo that he will be receiving that will wipe it out.  Therefore, they will be using his own bone marrow that was harvested in February for the transplant.  You can read more about bone marrow transplants and donors at www.bethematch.com.   

Princeton was scheduled to start the transplant process on Monday, June 04.  We went to All Children's Hospital in St. Petersburg Monday so he could receive the Palifermin.  We were prepared to be there for atleast 6 weeks.  He received the medication Monday, Tuesday and Wednesday and was scheduled to be admitted into the hospital Wednesday afternoon.  Early Wednesday morning, Princeton's nose was slightly runny and he coughed about 3 times.  We mentioned it to the doctor who decided to take a quick cotton swab to Princeton's nose to make sure he was not coming down with anything.  He had just recovered from Sinusitis so he wanted to make sure it had not come back.  We were admitted Wednesday afternoon.  After being in the room and unpacked for about 20 minutes, Dr. Hale came in and told us they were going to have to postpone the transplant.  Princeton tested positive for Parainfluenza, a virus similar to Croup.  No one expected this!  However, we praise God that we mentioned it to the doctor and they did not proceed with the transplant.  If Princeton had gone onto transplant with the virus, he would have ended up in ICU and it could have turned life threatening.  With the transplant he has NO immune system whatsoever.  The virus would have traveled to his lungs and become very dangerous since he would have no means of fighting it off.  Since viruses cannot be treated, they gave Princeton IVIG (an immune booster through IV) overnight.  We went home Thursday afternoon.  So where does that leave us?  We are scheduled to go to Arnold Palmer Children's Hospital in Orlando on Tuesday to see if the virus has cleared up.  If Princeton tests negative for Parainfluenza, we will go to All Children's Hospital Wednesday to proceed with the transplant.  Otherwise, we will need to wait until the virus runs its course. 

We ask that you join us in prayer on the following:

We pray that Princeton would not get any infections through his broviac line.  Because the IVs are on the exterior they can easily become infected.  We also pray the lines would not break or puncture.  If the lines were to break or puncture Princeton could bleed to death as they go directly into one of his main blood vessels. We have a clamp to clamp the tube immediately in the event this should happen.  However, 2 year olds like to play and climb so we need to be very cautious. 

We pray the virus will be gone by Tuesday and we can go onto transplant Wednesday.  Each set back we face prolongs the treatment and allows opportunity for the cancer to metastasize or grow.  We trust God and His perfect timing and that He will not allow that to happen.  We may not always understand the setbacks, but we know they are for a reason and that is good enough for us.  One day and one moment at a time is all God asks for.  We have to leave the details up to Him. 

We came across an encouraging message the other day written by Andrew Murray:
"Number one, God brought me here.  It is by His will that I am in this place.  In that fact I will rest.  Number two, He will keep me here in His love and give me grace to behave as His child.  Number three, He will make the trial a blessing, teaching me the lessons He intends for me to learn and working in me the grace He means to bestow.  Number four, in His good time He can bring me out again.  How and when, He knows.  So, let me say I am here."

This has been an incredible journey for our family immediate and distant, but a blessing all the while.  This is a small fragment of the big picture God already has planned out.  We do not know what the end of the story will be, but we can rest assured it is going to be a good ending we do not want to miss!  We believe without doubt Princeton will be cancer free by the end of his treatment and that it will not return.  Matthew 8:17 states, "He took up our infirmities and carried our diseases."  God has not placed us in this position to hurt us, but to bless us and draw us nearer to Him every moment of every day.  It is through His love and compassion we are able to face this trial united.