Our treatment is from St. Jude Children's Research Hospital. This protocol was created in 2007 and was amended in 2009 to add Proton Therapy to it. This is the sole reason we came to St. Jude as this is the only "curative" for Nicholas' Diagnosis.


Nicholas' Treatment Plan is the SYJC07 Protocol

It consists of 4 rounds of high dose chemo that are all 28 days cycles.

The Drugs included are:

-Methotrexate (Day 1 a 24 hour IV Drip)
-Cisplatin (Day 8 a 3 hr IV Drip)
-Cyclophosphamide(Day 9 a 1 hr IV Drip)
-Vincristine ( Day 8 and Day 15 both IV pushes)

A Review is done after 2 rounds, and MRI and lumbar puncture are both done as well as an ABR ( hearing test) and Reviews for Phyisical Therapy and Occupational Therapy.

***Nicholas' MRI after 2 rounds was STABLE and lumbar puncture was negative for cancer cells.

His ABR reported mild hearing loss in the high frequency range and if I were to explain that to you, it would be like saying the word Dogs. The S would be faint, not like we hear it.  He can hear it, it just isn't as piercing.

Due to the from hearing loss from Cisplatin after 2 cycles we modified the plan by exchanging Cisplatin for Carboplatin.

 

The Drugs included are:

-Methotrexate (Day 1 a 24 hour IV Drip)
-Carboplatin (Day 8 a 1 hr IV Drip)
-Cyclophosphamide(Day 9 a 1 hr IV Drip)
-Vincristine ( Day 8 and Day 15 both IV pushes)

 

***Nicholas' MRI after 4 rounds was STABLE and lumbar puncture was negative for cancer cells.

We then went to Jacksonville, FL to the University of Florida Proton Center, where Baby Nicholas received 30 rounds of radiation treatment. If you follow our journal it explains our daily journey with radiation. This type of radiation is pinpoint and the margins are minimal and will have the least damaging long terms effects on his growing brain.

We started radiation on October 19, 2010 and completed it on December 1, 2010.

 

On December 6-9 Our ABR for hearing remained STABLE - consistent with the last test thank you Lord. Our Psychology evaluation, Physical Therapy, Occuptional Therapy, and Speech Therapy were all on target - THANK GOD!

***Our Scan on December 9, 2010 our MRI showed to be once again STABLE and lumbar puncture was negative for cancer cells.

On December 9, 2010 we started our consolidation phase of our protocol which consists of 6 months of oral chemo. It consists of 6 rounds of chemo that are all 28 days cycles.

Month 1- Cyclophosphamide and Topotecan (cyclo for 21 days and topo for the first 10) then a week off before starting round 2.

Month 2- Erlotinib for 28 days

Month 3- Cyclophosphamide and Topotecan (cyclo for 21 days and topo for the first 10) then a week off before starting round 4.

MRI - STABLE Feb 24, 2011

Month 4-Erlotinib for 28 days

Month 5-Cyclophosphamide and Topotecan (cyclo for 21 days and topo for the first 10) then a week off

Month 6- Erlotinib for 28 days

Oral chemotherapy - COMPLETE


MRI - STABLE May 25, 2011


FINISHED TREATMENT


MRI - STABLE Aug 25,2011


MRI - STABLE Nov 30,2011

MRI - STABLE April 20, 2012

MRI - STABLE May 31, 2012 - Possible fluid build up called Syrinx in the spine

MRI - STABLE Feb 23, 2012

MRI - July, 31 2012 U of M Motts Spine only - Syrinx is slightly larger

MRI -  STABLE, Jan 14, 2013  -Syrinx worsening and now radial changes are present in the brainstem and pons ( watch and wait) Shunt surgery scheduled next trip

MRI -Stable Mar 11,2013 - Syrinx appeares worse along with radial changes 

VP Shunt Placed Mar 13, 2013

MRI- June 7, 2013 STABLE, however Syrinx and Ventricles are clearing up from shunt - remaining the edema in the brainstem and pons has slightly worsened again

MRI - August 29, 2013 Not sure what to think as the radial changes have worsened and no one knows why

October we opted to enroll Nicky into Hyperbaric Oxygen therapy in hopes to stop the radial damage, if that is what we are dealing with he completed 60 dives On Dec 27, 2013

Next MRI - Jan 22, 2014 please pray

 

We missed the Jan 22, 2014 scan due to a flood and scanned locally - this is when on Feb 11, 2014 our world shattered and the radial fields that we know we over radiated were worse than ever and he was showing symptoms. there was nothing more that we could do, I had begged them early on to treat for radiation damage, but no one was willing at St. Jude to do it because they knew the errors made between Dr. Merchant and Jacksonville and so they kept it quiet. To be a case no doctor ever seen these issues with when I had 5 teams looking at them is still unreal. There was only one doctor that was willing to tell me the truth month before but I kept hope - and I told no one that was likely ahead. Our Boy lost his life on March 9, 2014 due to radiation induced damage that no one still today will admit or take responsibility for, however I have the map that states it from the walls I walked miles in .... I wish this on no parent .... we miss you our sweet boy, our nickybear

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