Die Dumplings Die!

Today is the day we are attacking the dumplings growing out of control in Trayvon.  He lovingly named his fast growing tumors, dumplings and his slow growing ones, biscuits.  When the doctor came in this morning to discuss his plan and shared some possible side effects of the meds, he simply stated; "Die dumplings die."

To back track and let you know why we are where we are today, I thought I'd share how the plan changed from day one to this moment.

July - Trayvon's EBV levels had increased significantly.  EBV stands for Epstein Barr Virus.  99% of the world population has EBV and most experienced the virus as a simple cold, never even realizing they had caught it.  For some it elevates to the classification of Mononucleiosis.  The virus is more aggressive and can cause severe throat pain, spleen enlargment, and high fevers.  This is not rare but also not super common.  Almost all recover with no further issues.  However. . . . if one has a compromised immune system, either due to systemic infections such as HIV or take immunosuppression medications (specifically ones that decrease T-cells (the cells that target EBV) then the EBV can multiply out of control.  This is what happened to Trayvon.

Over the course of three months Tray had lost 17 pounds, had difficulty eating, was very fatigued and needed blood transfusions due to low red blood cell counts.  But he did not have a diagnosis that gave us a reason for these issues.

August 24th - Tray has a severe pain in his side.  Thinking he had a possible appendicitis, I took him to the pediatric urgent care.  (he has horrible veins and pediatric nurses are so much better at getting IV's).  However, due to the tenderness, firmness, and severe of pain in his stomach, they sent him over to the ER.  Here he was put on the adult service.  Due to  Trayvon's unique anatomy (he has many of his organs flipped on the opposite side of his body) we were not even sure where his appendix was, so they did a CT scan to identify and determine if that was the issue.  It was there that our new journey began.  It was found that he had a large mass in his intestines, most likely a malignancy. While in the ER he recieved a temporary central line in his arm, recieved a blood transfusion and was eventually admitted to the adult oncology floor at Upstate University Hospital.

The adult world of medicine SUCKS!  Nothing can be done in an efficient manner.  All of his tests he needed were going to be spread out all over the week.  We contacted his transplant team in NYC where they arranged for us to meet with their oncology expert and complete all of the necessary testing in one trip to the OR.

August 28th - we went to NYC via ambulance for a full workup.  CT scans, x-rays, blood, spinal tap, bone marrow aspirate, upper endoscopy, lower endoscopy, hundreds of biopsies, and adnoide removal all happened in the OR.  The adnoide tissue proved to be EBV positive and progressing towards malignancy.

August 31st - returned home to await the results of the pathology report.

September 5th - results show pre-cancer masses called PTLD (post-transplant prolyphorative disorder).  These abnormal cells were in his spinal fluid, bones, lungs, liver, intenstines, and neck area.  The best treatment was called cytotoxic t-cell therapy (CTL).  The CTLs are actual t-cells (the cells his immunosuppression killed off) taken from donor patients.  These cells have all been exposed to EBV and quickly and efficiently kill it off.  He would get an infusion and the goal is that the CTLs would seek out all EBV and kill it, and with the virus gone, the tumors would disappear too.

September 11th - To be admitted onto the CTL study, a patient has to fail another standard therapy,  So Tray had a dose of medication that is specifically suppose to work on this particular type of tumor.  Then we had to wait three weeks to see if it worked.

October 11th - Tray has a PET scan in NYC and meets with the study doctor.  He appears well so he signs the paperwork for the trial.  The PET scan shows advancing disease.  He qualifies.  They return home that evening.  While in the car, his stomach starts to hurt more.  Over the course of Saturday and Sunday the pain increases and becomes more continuous. By Sunday night, he was in agony.  I brought him to the ER where they did a CT scan and found many more new tumors.  The CTLs were going to be ready for infusion on Tuesday so the team had hoped he'd stay stable long enough to get to NY for the trial.

October 13th - admitted to the pediatric oncology floor.  Upper endoscopy shows two large tumors in stomach. Biospy shows a fast growing malignancy called Burkitts Lymphoma.  Trial in NYC is no an option.  He is no longer stable enough to leave the hospital.  TPN  (IV nutrition is started) consultations begin to identify the best chemotherapy regime to start.

October 20th - Die Dumplings Die!  Vincristine, Cytoxan, Prednisone are on the menu today.  Tomorrow he has a spinal tap to check for cancer in his spinal fluid and will also get chemo into his spinal fluid.  If there is no cancer, he will get chemo as a prevenative measure once a week in his spine.  If there is cancer, he will have to do it three times a week.  He will be in the hospital for at least another week.

Today he started writing a book.  He is thrilled to have a plan and has a positive attitude the majority of the time.  He is amazing!!  

Well, hello and long time no see. . .

It's been a long time.  I have been thinking about posting and just felt life was happily moving along so no need to really worry about it.  Then the other shoe fell. 

Before that though, I'll run through a few things that have been happening since the last update. 

1. Kids went and got older, despite me telling them not too. 
Annette is 29.  Oh that is so much harder to see than say!
Joshua is almost 24 (September 21st)
Tray is almost 21 (November 7)
Marriela is 17
Cody is turning 14 (September 9th!) and
Sergio is 13. 

2.  Some kids graduated, moved on to new schools and stopped going to school altogether. 
Joshua graduated three years ago.
Tray graduated last year.
Marriela is set to graduate in four more years.
Cody is also set to graduate in four more years (BIG graduation party!) and has started at the high school.
Sergio no longer goes to school but has everything provided at home through the homebound program.  This is working wonderful for him and he's been incredibly healthy.

3.  We moved.
We moved into our previous house the day before Christmas eve 2002 with three children (Annette, Joshua, and Tray.).  It served us incredibly well!  We went through many, many challenges in that home and it held both heartbreaking and breathtaking moments of love and pain.  We adopted 2 more children, fostered another that sadly passed, and cared for our nephew, having as many as 8 kids at a time in the house.  Hard to believe all we went through!  But it was getting far to small.  We found the house that perfectly met our needs last year to allow our growing children room to move and spread out.  In June of this year, we moved in.  I spent the summer unpacking, cleaning, painting, and planting to make it our home.  We LOVE our new home and it is only a few blocks up the road from our old house. 

4.  I finished my second masters, this one was in Special Education, so I can maintain my position as a special education teacher in the Syracuse City school district.  This is my tenure year!  I love my job and my school. 

     Peter finished his masters in Mental Health Counseling, worked at Vera House for almost 4 years and now is doing private online sessions and in home family counseling in the Syracuse area.  He loves the freedom and flexibility he now has to adjust his schedule to meet the family needs as I work daily at school. 

5.  Kids health:
Annette:  Doing great!  She struggles with moving ever since her severe knee infection that landed her in the hospital for over 6 weeks!  But overall, she's happy and healthy and lives her life by her rules!
Joshua:  Has successfully weaned off of his biweekly IVIG for seizures.  He still seizes daily but not more than he did with the IVIG so we are happy to take away one additional medication.  He has had a port for over 13 years with no issues at all. . . then all of a sudden, he developed what was thought to be a hematoma.  Over the course of the past month, it has slowly grown into a large sore that culminated in an emergency surgery tomorrow morning to remove the port that apparently has decided to try and come out on its own!  Never saw anything like this in my life.  Joshua has had some sort of central line for 18 of his 23 years of life!  First for his cancer treatment, then for IVIG due to an immune deficiency, then for IVIG for seizure control.  He's excited to not have one anymore!! 
Marriela:  Has had an incredible summer, despite the move and recent changes in the family.  She went to program for 3 weeks this summer which was a HUGE accomplishment! She still has some CRAZY ideas, like asking Santa for God's number to find out the DNA of every African American to find out who she is related too.  Must give her credit for her resourcefulness in using Santa as her in with God, who she has sent letters too in the mail. 
Cody:  Growing like a weed!!  He's now taller than me with size 13 feet and he only started puberty 5 months ago.  I don't like where this is going!  He is impossible to fit for pants as he's so skinny but so tall that finding things that are long enough but don't fall to the floor with every step is my new challenge.  He's also started playing football for the first time this year.  He loves it! 
Sergio:  Doing amazing!  He is still TPN dependent and still has all of his medical needs, but has been healthy now for over a year with no fevers or infections!  His growth slowed down (he's very small for his age, but was growing steadily) over the last year, so we adjusted his TPN and should see a little more growth. 

and finally, Trayvon:
Tray has had a difficult year.  First he decided he really wanted to try going out into the real world, but do so without the right supports or the right environment.   As such, he struggled with taking his meds and becoming very depressed, resulting in a trip to the ER.  There he learned he had a high fever and was septic due to a large pneumonia.  He was restarted on all of his meds and was doing much, much better and made the decision himself to return home to get himself well and then move out the right way and to the right place, with the right supports.  However, even after healing from the pneumonia, he was still struggling with severe exhaustion, increasingly low red blood cell counts and blurry vision.  He began seeing a hematologist and received blood transfusions for his severe anemia.  I knew something was very wrong and at his annual cardiac biopsy shared my suspicion he had PTLD.  Fast forward 2 months.  Tray has PTLD, confirmed by scans and biopsy.  He developed a severe pain in his left side that prompted me to take him to the ER for evaluation.  The CT scan identified a clear and concerning mass in his intestines and colon.  He was admitted to the Upstate oncology unit.  We were in contact with NYC transplant team who advocated we bring him there for a thorough and complete workup to be reviewed by a specialist in PTLD, so we transferred by ambulance in the middle of the night to New York.   He underwent many tests and it was discovered he had severely swollen adenoids (they are made of lymph tissue and therefore are most likely rapidly growing cancer cells) causing him to have sleep apnea.  We had several more blood transfusions and biopsies of his entire GI tract where there was evidence of problems everywhere.  In addition, a large and active ulcer was discovered and may be the source of his low blood counts. 

We are back in the world of cancer.  He has been accepted by the pediatric oncology team here in Syracuse and NYC so he will be cared for in the developmentally appropriate manner he requires.  He seems to be ok mentally right now, as I am very careful that we never spring anything on him without warning.  He knows he has cancer and knows he needs chemo.  He knows he'll lose his hair but as long as we get 'cool do rags' he says he's ok. 

Life is crazy sometimes and just when things were settling down, another curve ball comes our way.  None of our child except Cody, should be here.  Every single one was given varying chances of making it to a given age.  Joshua's tumor had a 95% fatality rate even with treatment, he's here.  Annette was given 2 weeks left to live when we had her Make A Wish trip. . .She's still here.  Marriela was given no chance in the NICU where she was born at only 26 weeks and 1 pound. . . she's still here.  Sergio. . . well hell, everyone knows that kid shouldn't still be here, but clearly forgot to let him know that! Tray was literally given no chance of survival the night he was shocked three times to get his heart to stop beating 300 beats a minute for hours.  He then went on to have a successful heart transplant despite many odds against him. . . he will continue to be here.  That's all there is too it. 

Well, it's not the light hearted update I'd like to have done, but I know there are those who don't know how things have been recently and this felt like an easier way of updating our craziness. 

Love to all,
Renee