We got you!

My name is Carisa, and I am the mama that stood there alone and heard those words that no one thinks they will hear.  For about 2 weeks Jaxson started exhibiting different symptoms and behaviors than his normal baseline.  Get ready and Hang tight for our very long journey in a very short time frame.

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It started just days after his 7th birthday.  He celebrated with his twin and their classmates and friends running around a bowling alley being normal rowdy kids, laughing and having a ball.  Never in a million year would I ever think our world as we knew it was about to change.  Jaxson woke up one morning with a very bad sore throat and severe drooling.  Being a medical professional first instinct is strep, so after a day of it not getting better we went to the pediatrician on March 5th and received a strep, covid, flu and rsv test.  All came back negative, so home we went to baby an irritated throat with some warm tea and Tylenol.  Then a day or so later it progressed to very blurred vision where he continuously walked around with one eye trying to be able to focus.  Now Jaxson has been being treated for bilateral lazy eye since he was 6 months old, so i just thought it was time to get back to the doctor.  However those symptoms were now accompanied with a head ache, ear ache and extreme fatigue so back to the pediatrician we went on March 8th, throat still irritated but nothing else showing any reason to be having these symptoms at the degree he was.  So the doctor and I decided to run labs for mono.  So he was so brave as his Nurse Lu and MA Sam drew his blood.  The labs came back rather quickly and were normal.  So we started steroid course to help with inflammation.  We would see little blips of Jaxson but over all he was just a glassy eye, pale and exhausted little man.  Quickly the symptoms progressed to hyperextension of his knee when walking, excessive falling (like 50 times a day), his walking worsened to the point he stumbled like a college student leaving the bar at 2 a.m. Finally on Tuesday March 12th I got an emergency ENT visit using my internal medical access and off we went.  The doctor came in and very passively examined Jaxson and said he was feeling so miserable because he had an ear infection.  I asked if this was enough to cause such drastic equilibrium and walking issues.  He nonchalantly told me "Eh, it could but he is 7 they are a bit theatrical when not feeling well".  He called in antibiotic and home we went.  He now added the symptoms of severe anger and behavior changes telling me he hated me and wanted a new mom. 

 

These weeks were dreadful and exhausting.  Being a single mom, I worked a very busy work schedule which didn't allow me to parent as I wanted to, but bills have to be paid and the twins had wants and needs.  My mom thankfully is the best Noni around and was the caretaker while I was the bread winner.  So when Jaxson started with these symptoms we of course had many conversations regarding something not being right.  So I promised my mom if the antibiotics hadn't made a positive improvement by Friday I would get him further evaluated.  So now I spent all my free time researching things that could be wrong with my boy.  ADHD, Cerebral Palsy, and so many more because something wasn't right.  At this point Wednesday and Thursday came and we had no improvement in fact all he did was sleep.  Friday came and I was at work finishing the week and I get a call, answer and it was Jaxson, through his slurred speech he tells me his arm isn't working, that it just hangs there like a monkey and he cant use it at all.  It was then I knew we needed to go to the emergency department.  I finished my work load and didn't leave anything open as at that moment I knew I wasn't returning to work on Monday, but wasn't prepared for what was to come.

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We went to the new children's emergency department not far from our home, I had to carry him inside as he was unable to walk at this time. We were greeted at the door and as we were escorted we were asked what brings us in?  My response, "I know it is unlikely but I am pretty sure my son had a stroke".  Praise God they moved rather quickly at that point.  Every medical personnel that came in performed a neuro check and he failed 100% every time, now I knew something was really wrong watching their faces and eyes looking at each other was not assuring to say the least.  They wheeled us away for CT Scan and there it went, my life as I knew it.  The very young doctor came in and reviewed with me that they did find a lesion in his brainstem and at this point we need to be transported to Children's Hospital of Philadelphia. 

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Waiting in our ER room sitting on the stretcher holding my sleeping, lifeless baby boy who they just told me was so very sick I held him, rocked him and prayed over him as the tears poured down my face "Please God I lay my baby at your feet.  Please father protect him and keep him comfortable, and pain free.  Lord I believe you are in Control and I surrender all as this is far more then I can do on my own".  Around 3 am the ambulance from CHOP came and picked us up to take us into the unknown.  We arrived in Philly at 5 am thank God for that little bit of sleep cuz I had almost been up for 24 hours.  The stress of the unknown and the fact that I was all alone in an unfamiliar place dealing with an unfamiliar issue that I had enough knowledge to know this was not going to be an easy fix.  This meant brain surgery, recovery, therapy's to relearn things.  So many doctors, nurses, techs, child life, and other medical personnel swarmed our room.  He needed a brain MRI but these are normally done with sedation as kids wiggle for the time frame and it was important he hold still.  So it was a lot of deciding when we should do it. I mentioned that I thought he would be able to perform the MRI without sedation and they looked at me like I was crazy but seeing his behavior and state agreed that it was worth a try so we can get on top of things quickly.  

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So he did, he completed the MRI on his brain with no issues.   Held nice and still like a ToyStory Soldier for the hour scan.  This was the first time I realized I was raising one incredibly courageous boy.  We were admitted directly from there so we were transported to a room on the PICU (Pediatric Intensive Care Unit).  There was when the reality of life set in.  Jaxson at this point was status quo felt silly to be on intensive care unit.  The results came back and the neurological oncologist on call came in and asked if we could talk else where.  Out the door we went, I walked down the hall after them, my hands sweating, my heart pounding, my body trembling.  That walk was the longest walk of my life.  We arrive at the family lounge and they tell me to have a seat.  They tell me that  it in fact is a mass in his brainstem and they are confident that the diagnosis is Diffuse Intrinsic Midline Glioma (DIPG) the most rare brain tumor children the ages of 5-11 get.  Deep breath Carisa, take a deep breath and focus on the information.  The next step was to biopsy it so that they can dissect the tissue and know the information that is needed.  Wait, I have a million questions.  What causes this?  Did the fact that I waited to bring him make it worse?  Was he going to die? At what point is this inoperable?  I watch Grey's Anatomy faithfully so I thought I knew what expect.... You ready???  The doctor blurts out "Oh this is inoperable at this point!" Wind just got knocked out of me and I was struggling to fill my lungs with air.  Inoperable, what do you mean? How can this be? We are at the best hospital!  [Breathe Carisa Breathe.  Don't cry hold it together, tears aren't going to make this any different].  

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So as that one lonely tear escaped my tear bed, I asked what's next? What are we looking at?  
What do I need to expect. I had never even heard of this. They explained that this form of tumor can be cancerous or not cancerous.  It is extremely aggressive and that is why his symptoms came on so quickly. This tumor is inoperable as the placement is way to difficult to excess and to intricate to successfully survive the surgery.   I used the example of a ball of yarn all tangled, they said exactly, the tumor is intertwined with the nerve that make his brain transmit signal to body to function.  These nerves work motor skills and sensory just to name a few major reasons why they couldn't operate.  As bad as all this was I never felt that infamous question WHY? Being a born again Christian I strongly believe that ALL THINGS happen for a reason, even when we can't see why our path is determined before we are even created in our mother's womb.  So my boy was born to fight this, and I WAS BORN TO BE BESIDE HIM. 

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The rest of our journey has been a blur of appointments, treatments and adapting to our new life.  Jaxson had his biopsy the next day.  As always there was some pretty extensive complications to this procedure.  It was a 4 hour procedure and I don't think my heart beat once that entire time.  I've never prayed more than now in my entire life.  He came out of the procedure for the biopsy still lifeless and intubated, a vision no mother should have to see.  He vitals were so unstable I kept thinking is this the end?  Finally he started waking up and vitals stabilized, but it was not ok.  One of the complications of the procedure is it irritates the tissue and it swells.  In Jaxson's case that is exactly what happened, he woke up from his biopsy 90% paralyzed on the right side of his body.  He couldn't swallow, walk, move his limbs, sit up alone, etc. Dr
Kline came in and confirmed it was in fact DIPG with H3K27 Mutation.  I finally get the answer to my question, is my son going to die and how much time do i have left?  She explained that this tumor is terminal and has no cure.  That her prognosis was that Jaxson has 9-12 months from time of diagnosis.  I only have a year the max to spend with my baby.  There is so many things I wouldn't get to celebrate.  This is the only  thing that broke me.  This was the toughest part of our journey, Jaxson being on steroids but being restricted to have nothing by mouth.  We were moved out of PICU and onto the Oncology floor.  There Jaxson started receiving physical therapy and occupational therapy daily.  Watching my boy needing to learn to walk was devastating but he was so determined.  We were quickly moved to the inpatient rehabilitation wing where he would receive extensive therapy regaining skills and strengths.   At this point your team sits down and asks you what your goals are.  Our Oncologist asked Jaxson and he said to play baseball again.  Then she turned to me and asked me and mine was simple but unrealistic in the world's eyes.  I just wanted my boy to regain his independence.  

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The next 5 weeks was crazy, we worked a 9-5 job just by doing rehab.  Somedays we got frustrated because it was exhausting  It was then that we prayed harder because we knew God was working hard.  Jaxson started his 32 rounds of radiation on March 28th just 12 days after our arrival.  This is another step he did without sedation and surprised all the staff.  Everyday we had a routine, finish rehab, walk to radiation in a secret tunnel, climb up on the table, lay down, get our mask on, watch an episode of Bluey and then go back to our room.  He had pretty minimal effects from the treatment.  Lots of nausea and some violent vomiting.  They also injected botox into his right ankle and calf to enhance muscle tone. Everyday we saw a huge improvement. He was walking and playing with assistance, talking, eating small bites, but overall if this is what we ended up with then I was ok with that. Jesus had other plans! He provided an incredible team that Jaxson responded well to and gave his best effort even on his worst days he still rocked out therapy.  There was even a day when he vomited and his OT therapist was getting ready to bring him back to his room and he looked at her and said, "So what are we doing today?"  and finished his session. 

 

Everyone just adored my kind boy with the amazing hazel/golden eyes and dimples for days when he smiled his heart melting, day brightening smile.  His whit and sass (yes boys can have sass too) kept us on our toes.  He was the uno king and always beat everyone at least once.  All medical staff from physicians to cafeteria employees and all in between new him as the little boy who loved superheroes and had a gazillion stuffies in his room.  When we got admitted it was important to make his room as inviting and warm as possible because we were there for the duration and going to be our new home.  My all time favorite moment I will eternally be thankful for and cling to is asking Jaxson what his super power was since he was a superhero now?  After a lot of  back and fourth bantering he looks me dead in the face and says I make other people smile.  Every time i talk to someone they get a big smile and then I smile back.  Yes baby boy you are full of light!  We finished radiation and after 56 days in the hospital we finally got discharged to come home.  He left by being celebrated by the staff at rehab and patients and families with a parade where he WALKED alone without any assistance or stumbling then he flossed and dabbed! Witnessing the journey and seeing this  moment I knew we had received a miracle that everyone was praying for.  Everyone only thinks of the big picture with full healing, which I pray for too, but we received a miracle on May 10th.  The boy that was paralyzed was dancing down the hallway to the song of his choice.  We did not take choosing a song lightly as we wanted to celebrate the moment and share our faith with everyone.  He chose Good Day by Forrest Frank and that has now become 'Jaxson's Song'.  

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We came home with the anticipation that in 4 weeks we  would return for repeat MRI to see what the treatment did.  We fit so much in the 4 weeks, we had huge Welcome home parade and Epic Hot Dog party, went to Disney, Met the NY Giants, and so much more! Now let me explain the hot dog party, upon admission we wanted to give him something to thrive for to come home so when asked how he wanted to celebrate he said a hot dog party, so that is what he got.... a good ole block party with a DJ, a balloon wall, a balloon hotdog, hotdog cart and just good ole town interaction! Our town had been so supportive that we had our own little celebrity on our hands!

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Time came for scans, the part I was most nervous about.  We went for 2 different MRI's which required iv placement, gown change and labs. Believe it or not the only part out of the whole experience that he struggled with was wearing the hospital gown. So these 2 appointments we tough, emotional and confusing.  One afternoon I got a call from Dr. Kline, our oncologist, with the results.  Another moment where I to remember to breathe. His original tumor in his brainstem had responded well to treatment and shrunk significantly. Exhale, Praise God! However she wasn't done.  She continued to say that there was new metastatic growth in the frontal lobe where the spinal fluid is generated, so this required another spinal MRI.  Thank God these tests don't take long to be resulted and Dr. Kline is amazing at communicating.  Unfortunately there were several growths in his spinal column as well and oddly there was a spot in his one vertebrae of metastatic disease.  She had never seen it spread to bone.  So we had to complete a PET scan to check and see if had spread to any other area of bone before next round of radiation so we can treat all at once.  Praise God we got some good news that no other bone growths and no bone marrow concerns at this time on labs.  We were told to celebrate the good and get ready for another fight! 

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We returned to Philly on July 15th for 13 more rounds of Proton Radiation Therapy on his entire brain, entire spine and the vertebrae spot.  I anticipated the worst and expected a bad reaction.  However he proved me wrong and once again and was so brave, courageous and determined.  We completed this second fight on August 1st.  He had even more minimal side effects from treatment but did loose his hair when we got home.  Now we wait for another 4 weeks to have another MRI and see how these tumors responded.  New scans are on August 27th.  Please pray, we have been fighting for 5 months and so thankful for the second chance we received.  So many other children do not get that opportunity.  

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Now through this write up I used us and we.  That is because we are a team, the dynamic duo! I would give anything to take this burden on myself instead of watching my baby.  None the less, I cant, but I can be his source of comfort, encouragement, and his biggest cheerleader.  I dont get to be sad, hurt or scared, because little eyes are watching my every move.  What I want my example to be is a faithful heart who loves JESUS and trusts him with everything.  i have my moments in private but I decided from day one when I was done crying and giving my baby to Jesus that I was not going to allow fear of the future to steal what ever time I have left.  The way I can exude such strength is through the support i've received.  The encouragement, the smiles, financial help received, blessings received as simple as staying at the Ronald McDonald House. All of these were offered by family and friends but also by families who have lost their warriors.  The fight is exhausting and takes a toll so at a certain point they get to go home to Heaven and be free of pain.  This doesn't take the pain from us parents here on earth.  I want to share my support to you as so many did for me!