Updates

Baby’s ANC is at 0 today and he has a fever of 99.6  which means we are automatically admitted inpatient for at a minimum of 48 hours.  We knew this would probably happen since he gets fevers often for no real reason. They took cultures and they take 48 hours to come back so that is why it is the minimum.  So now we just pray for no infection and that his counts go up soon.  They automatically but him on Sepapem an antibiotic that is combating anything he may have while his counts are low. They have this process down like a drill.

ENT appointment today …. I felt like someone took a bat and smashed it into my gut. It’s not that the Doctor said anything I didn’t know already – but I wasn’t ready to have it confirmed.  The baby’s left vocal cord is paralyzed.  The right one is weak but is already trying to compensate for the left.   Out of all the nerves located near the brain stem, his hearing is perfect, his vision is perfect and he has no facial paralysis.  None of those are recoverable after surgery if they are knocked out, EXCEPT vocal cords which can take up to 2 years to recover.  Unfortunately, one of our chemo drugs (Vincristine) actually makes it worse temporarily. So does radiation which is our next course of action after the next 3 rounds or chemo. That was frustrating to hear, BUT there is hope and My God performs MIRACLES.    This is the reason why he is not swallowing properly.  Vocal cords are shaped like a V and they work together to close the airway when swallowing. When one of the vocal cords is paralyzed,  that half of the airway is not shutting properly and therefore any liquids or food you swallow has the chance of ending up in the lungs. That is call aspiration and it is extremely dangerous for Baby Nicholas because it could cause infection while his body is not able to fight infection.   So for now just pray so so hard for his vocal cords to be completely restored.  This test will be repeated in 3 weeks.

Dear Lord,
My Great Physician! Please Lord heal our boys vocal cords so that he can swallow properly.  Lord, you have been so good to us, but this causes us the most concern and stress during this healing process.  Please God, place your precious hands on him and heal him totally.

 

We had labs today and his counts are starting to drop as anticipated they are now at 2,900 and I am starting to dislike being the bad guy having to give my little guy shots daily to raise his ANC counts – however they say that the IV form of this takes longer for them to recover and I simply want to give him the best chances to recover better – so instead of IV we choose Jesus and the shot’s (smile).  Nick said he crawled today, not far but enough to makes us both smile. He hasn’t wanted to crawl since his line and g-tube were put in because it just hurt him too much. So today was a blessing to see him wanting to move around like he use to.   AND …. HE’S NOT SICK AT ALL – THANK YOU JESUS !!!! They took him off fluids too.

Dear Lord,
Today when reading how Jesus told us to pray – Our Father whom art in Heaven, hallow be thy name …. Thy will be done ….. ( not MY will  - YOUR will …. ) and I stopped to remember – it is YOUR will Lord no matter what the day brings …. That will be done on earth as it is in Heaven.

They said we didn’t have to do labs today because they would check us tomorrow so no appointments today !!!  We are so thankful to God that he is STILL not sick from these drugs.  He has been in a good mood and keeping his feeds down completely.  We couldn’t ask for more during these really hard chemo drugs. 

Dear God,
We continue to pray for restoration of his vocal cords and that his swallow improves …. We are so grateful for this week and how easy you made this round so far.   We will glorify you and endlessly thank you for this week.

We had labs drawn today and his counts were overly high from the rescue shots we are giving him to combat when they drop. His ANC (absolute neutrophil count) was 5,900They still want to keep us on fluids to make sure he does not get dehydrated if he gets sick.   The nurse practitioner told me he is still not out of the woods with getting sick from these drugs.   We say, GOD IS SO GOOD  - he’s still is not getting sick at all!!!!

We got discharged as inpatient today.  They sent us home on IV fluids just in case he does get sick they want to make sure he is really hydrated.  However, GOD IS SO GOOD – he isn’t getting sick at all!  His ANC (absolute neutrophil count) was 12,500.  In healthy people It’s typically 5,000 to 10,000.  This is normal when you give the drug prior to the counts dropping.  the woods with getting sick from these drugs.   We say, GOD IS SO GOOD  - he’s still is not getting sick at all!!!!

Today is Day 9 of the chemo cycle and he finishes the tough drugs today. They told us that some kids get sick during day 8 and 9 but mostly it is a delayed reaction to the drugs administered.  He has been in a good mood and hasn’t gotten sick. The speech therapist is certain his mouth is strong enough to eat, it’s whether his throat is ready or not to swallow properly. The easiest way to explain it is,  try holding your tongue and swallow – it’s impossible because when we swallow, our tongues with force push back and cover our airway while the food and water hit the back of our throat bypassing our airway. This is why he may be swallowing great right now but not always swallowing properly.  Our problem is that if he swallows wrong, he aspirates which means fluid will enter his lungs.  He coughs to clear it like anyone would but these cough attacks last longer than just clearing your throat and it hurts him to cough.  So today just pray for God’s healing on his throat and his vocal cords so that they may heal perfectly.   Praise God that he has not been sick at the hospital and thank you Lord for giving us today --- I loved holding him for hours today.  He was in a cuddly mood.

Daddy stayed with you last night and I will be with you tonight. Day 8 is here (Cisplatin 6 hr drip and Vincristine IV push) , it also marks that your now 9 months old today.  Stay strong my boy, know that I love you more than I ever thought possible. You and your brother are my precious boys and I just love you both more each day.   I know this journey isn’t easy for you (for me nothing,  I have ever lived through has been worse ) – but one day we will look back and we will tell the world how Jesus healed you. 
God’s hands are all over you baby!

I love you…your Mommy!

Starting day 8 and day 9 of chemo cycle tomorrow so we go inpatient tonight. I feel so sad today. I miss home. I miss my puppy. I miss normal. I miss my church.
Today marks one month since God administered the hands of Christ through Dr. Holly Gilmer and removed the tumor from my babies head.   Glory be to God for that miracle – and all glory to God for bringing us this far.
Today was the 1st dressing change without nurses assisting me.   Nick helped me with it and what a long process it is.  It amazes me how quickly educated you get into a totally different lifestyle.  I never imagined anything like this.  

Dear God,
Grant me the strength to keep going – to keep looking forward with my head up – today was as really sad day for me and I need you more than I ever have …

It's Father's Day ...not the Father's Day we expected - but it's the one God gave us.
I bought cards a month ago so no one got them since we packed and ran here to Memphis.
Today was a really tough day for me I cried most of the morning, prayed my heart out and called my Dad to tell him Happy Father's Day while Christian and I drove to Target.
My Dad asked me how I was and I broke down and said not good, he prayed and cried with me.  Just as I got off the phone, I turned to Christian and said, "I need Jesus so bad right now."
Then I looked at the car in front of us and this is was the picture of the window of the car in front of me, and this is the picture of the license plate. 

Dear God, when I am my weakest you show me that you can take a car from Washington and place it in front of me right when I said I needed you. 
You show me in small ways you are right here, every step of the way - in my darkest moments - you are here.

Exhausted and running on E …. Baby Nicholas hasn’t been sleeping well and we haven’t figured out his feeding schedule that works for us yet.  Oral meds upset his tummy and he’s just so unhappy.  Endlessly walking in circles around the Target House and on the grounds.  Nick took the baby to the Medicine Room (which is like ER for St. Jude)  To get his blood levels to make sure that the Methotrexate (chemo drug) had cleared his system.  Today he cleared completely – PRAISE GOD! (always praising God for the small things)   This had us a little worried because after surgeries like his sometimes this drug will stay in the hidden in the brain because of swelling.  So it was great he cleared so quickly.
We are happy to have round 1, week 1 gone …. But the reality is that we can’t put Baby Nicholas down at all, he sleeps in bed with one of us while the other sleeps with Christian and we switch when he wakes up. During the day he either needs to be strolled or be needs to be held. He is finally gaining back some strength to sit up but he can’t get into that position like he use to because of his G-tube, it hurts him and he cries.  It’s so frustrating because he doesn’t understand why it hurts or why he can’t do what he use to.

Dear God,
Please heal Baby Nicholas’ swallow – heal his throat God ….. so that after chemo we can get rid of this G-tube.  Please heal his vocal cords completely.  You are the only one who can Lord… so please, please, please heal our boy – mind, body and spirit.

Back to Triage for blood work to check for Methotrexate (chemo drug) – his levels were 0.0003 that’s the hospitals  border line and we are on it. Hopefully tomorrow he will be clear of this drug.  It’s so hot here in Memphis, us Detroiter’s can’t handle 90+ degree weather – it’s miserable hot.   We were scheduled for a hearing test today to make sure his hearing has not been affected.
THANK YOU JESUS, his hearing is perfect!  We needed a base line for his hearing because one of the drugs administered during chemo can affect his high tone hearing – please pray that this drug will not affect Baby Nicholas …

Dear God,
Please protect Nicholas’ ears from any harm … let him hear perfectly – the way you created him to be.  Let these drugs not affect him at all for that matter – we place our boy in your protecting arms during his chemo and we will be still in awe KNOWING YOU ARE GOD…. We ask for miracles knowing you are the ONLY one that deliver! We ask this in your son’s precious name … Jesus Christ …. Amen …

We just go out .... what a different not having tube down my boys nose. Dr. Wright and Dr. Gajjar wanted us to start chemo this weekend, but since his little body has gone through so much we asked to start Monday. We just need to let him build up a little strength and feel good.

We move into Target House, which is housing providing a sterile environment during chemo that will keep him safe. St Jude is partnered with companies like TARGET that actually donated these temporary apartments to families like ours and let us stay for free not having to add to the cost of what is to come with keeping up with Baby Nicholas' treatment once we are done here at Jude. Thank God for companies like Target ... I hope it will make you think twice to shop there knowing what they do for sick children....GOD BLESS TARGET CORPORATION!!!

 

This is our boy .... how much I love him it hurts ... my baby has tubes coming out of different areas of his body. Today he had his line placed so that he does not need IV's this is the two lines on his chest. The second is in his stomach to fed him ... he's been so strong ... I hold him and melt into tears ... why is this happening only God knows but it is taking its toll on me ... I die inside watching my baby go through procedures ... I would do it all, I would give my life for him ... I would do anything for him ... God please watch over his body and soul and KEEP him caner free. We are inpatient ... only for the night to make sure he's stable from both procedures.

 

It was a stressful night and we barely slept, Baby Nicholas can not sit up and can not really move - so either Nick and I are holding him or he is in his stroller and I am walking for hours to keep him calm. This paw sign is on our way to Jude and back from Grizzle House.

He has an MRI today - repeat to confirm that Dr. Gilmer did achieve a gross total resection. Their technology is so much more advance here - it's a bit scary ..... nonetheless, Dr. Wright came out and sat with us and told us it was clean and that their is no tumor. She said the LP came back fine and that tomorrow they will place his line, double lumen Hickman line. They will also place a g-tube and remove his NG tube from his face so that he can move his arms.

I am relieved with this happening tomorrow so that he can be mobile without a cord coming out of his face. We met a family here, there son is Seth B. on our friends we follow. They explained to us that most families call this week - hell week. Because you are so overwhelmed and terrified it's literally hell. I can related, this is totally terrify and I walk around this campus just in prayer for hours.

When we arrived there was a time change so we had to wait for our full schedule to get going. Nick and Christian went back to the Grizzle House, (Much like a hotel for temporary stays on campus at St. Jude) We were told this is where we will stay this week. While Baby Nicholas and I started our appointments.

While Baby Nicholas and I started our appointments, on our way to the Registration area, which by the way is where you start each day at St. Jude - they give you your full schedule and place a bracelet and your on your way. While standing there, I looked at all the children and just felt so sad .... all these families lined up everyday moving quickly from place to place trying to cure their children. I felt like I was in over my head, God where am I? I looked to my left and saw a child, he looked my son's age and had a shunt. I looked at the mom, who clearly looked stressed holding her coffee. I knew he was a brain tumor patient and I looked for that mom all day. We finished our triage visit and were sent to E-clinic - this is the clinic assigned to us since we are neuro-tumor. We met with our doctor, Dr. Karen Wright. She was extremely kind and thorough and went over what the week looked like. After 2 hours there, I walked the campus looking for that mom.  I found her sitting at rehab clinic.  We exchanged numbers and I was so eager to ask her what I was getting into.  We were suppose to have an orientation, but it didn't happen so our first day was cut short.

We had been discharged Friday, June 4 2010 and we were overwhelmed with learning to care for Baby Nicholas. His med schedule, feeding tubes and equipment deliveries from Beaumont. We needed a suctioning machine because Baby Nicholas wasn't swallowing properly. It was terrifying.  I remember walking in the doors to come home to pack and Nick and I saying - should we really have been discharged, what are we doing home? We were both so scared. We packed up and left Sunday evening and when we got on the expressway God purposely placed this rainbow to let us know we were on track...

If you look at it closely, the clouds created a cross on it, I felt a peace from God that we were doing exactly what we were suppose to do. We drove through the night and it was a tough drive for Nick, remember we pretty much went straight from 14 days in PICU to a full day of packing to a 12 hour drive to get to St. Jude. Baby Nicholas slept most of the way, my little man has been through so very much my heart breaks for him to be going through this.

Please God grant us the strength and courage to push through this - we are so tired and weak .... please pull us through this together.

 

Where do I start .... If you read our story that led to this it will give you more perspective of what led to where we now are. If you have not I will ask you to go to Our Story and read that.

This is my son .... I never left his side, I promised him I would never leave the hospital without him. I kept that promise. I can barely look at this photo, it's surreal to look at him like this. This photo was taken after his surgery, I wanted to take it only to show him one day what he went through and how God was there with us the whole time.

What I will never forget is the day of the surgery, May 24, 2010 - it was a Monday and I was so exhausted from not sleeping that I literally passed out after I saw a man in stained scrubs walk towards us and ask if we were Nicholas George's family, he was only there to tell us that the surgery just started and to wait for updates. Fear got the worst of me ....I think it exhausted me to the point I passed out until 15 minutes before his 6 hour surgery was complete. (The Lion in the photo to the right is from Bridget (Post) Capasso and her family sent to the PICU - A Lion to give us courage to get through - Thank you so much Brig ... I love you thank you for thinking of my boy)

What I will tell you is that the day of my son's surgery - I will never forget the gratitude I had in my heart when I saw David Strange and his wife waiting in the lobby of the OR for me, they brought snacks and hugs and left ... I wept .... Pastor Steve from our church stayed the entire 6 hours plus and prayed with us and just sat there ... I was a complete mess .... all I remember is being on my knees begging God ... to please let them get the entire tumor out and to heal him ....

Dr. Holly Gilmer walked out and told us that she removed it all, it was sponge like and easy to remove. I hugged her - I knew God brought us to her .... there is no other explanation that we went to ER when we did and that God gave me the insight to know to not leave without knowing..... Baby Nicholas stayed incubated from Monday until late Tuesday because they wanted to do another MRI to make sure it was all removed.  The MRI showed that she did an incredible job. God's hands administered through the surgery - no doubt.

Our surgeon told us it was malignant, so we knew it was cancer that night. Unknowing we thought a little chemo for clean up and that would be it. Little did we know our journey had not even begun. I was online all night researching Ependymoma the name the surgeon told us she believed the tumor was. The first mother I contacted ... Michelle Roderick (Erin's Momma) ... she was so kind .. she told me after a a four year battle, she just lost Erin her daughter, she told me to research PROTON (radiation) and she directed me to people still doing ok... fighting the fight.

(If these photos from PICU can't express our souls nothing will)

 

I was heartbroken .... I realized this wasn't even close to over ... she connected me to a few families ...Mei Lai Hippisley Coxe (Minty's Momma)  was the next person I reached .... she also said I am not in a good place, but told me to find braintrust.org .... ependyparents group. I woke up to a fleet of emails because she sent my desperate information and plea to the list.  The emails mimicked each other, Find Dr. Merchant ... Proton ... St. Jude ... about 13 emails and I remember being in the lobby of PICU, I called it my prayer couch where I went and just lost it begging God for help... I promise you I felt him bear hug me multiple times during the darkest hours I have ever lived - God was there. I spoke to numerous families fighting this disease --- I was on a mission God brought so many people into my world to help me know what to do next ....

During my research ...life stopped ... Baby Nicholas went into respiratory failure when they excubated him all I remember is the entire PICU staff being in the room .... I walk in the hall and threw my body against the wall and fell to the ground ... they stabilized him - but over the next few days this happened multiple times where I thought we were losing our son.  Our Beaumont staff --- my PICU staff I couldn't be more grateful for ....the one I still love the most is Katie Smith ...., but I can't complain about any of them - they were so caring, kind and gentle with our boy. I remember reading monitors - that's all that mattered.

I researched and researched and spoke to over 15-20 families ... I am thankful for each conversation ... but one email changed it all. I was praying for God to give us our path to heal him .... and then I got the email from Tamiko (Colins Mom) that changed everything. She asked me if Nicholas was swallowing ... he was not ... she explained everything we were going through, however my doctor should have I told me what we were in for. She then sent me the protocol ... I say it like she sent me gold -- but she did ... it was "THE PROTOCOL" for Nicholas .... I remember reading it crying so hard knowing he fit the criteria for this new curative for his cancer and knowing no one in the country would touch him because he was too young. I remember walking into our PICU room and Nick sitting there and I said, "We are going to Memphis", He said no... I don't want to go to Memphis ... I said God just gave us our path .... we are going to Memphis and we need to pack.

We went back and forth on this and waited for pathology .... it was Memorial Day Weekend and it took 10 days to get path results. Once the doctors walked in .... they said that it was a grade III, which was the worst grade. I believe God told me that because I did my homework before they even entered the room. I had already requested his tumor sample, slides, CT's, MRI's and reports all be sent to St. Jude.

I believe now it was a blessing in disguise that we were in PICU so long - that gave them time to see if Nicholas needed a shunt. Because of his swallowing being and issue, it kept us there longer and he did not need a shunt. He failed 2 barium swallow tests. I will now never understand why ENT was not scheduled before we left to see or evaluate my son.

I remember seeing Dr. Holly Gilmer an saying, "If this was your child what would you do?", her response was -" I would do what you are doing and deal with cognitive issues later." I never second guessed it, they scheduled for us to get a second opinion from a member of COG, from U of M, Dr. Patricia Robertson and we were scheduled on June 8th and never made it because we were discharged from Beaumont on June 4th, packed to arrived at Memphis (St Jude) on June 7, 2010.

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