Updates

Over the last few days we had family stop by and it was so nice to see everyone that had a chance to visit. We took time to just do normal things, like go to the Cider mill. Simple, but wow we have never appreciated simple as much as we do now. It was so nice to be together.  Baby Nicholas' is loving being home and I didn't realize how much more work it is to be home with him where there are multiple rooms to chase him from there. We got so use to living in one room in Memphis that having multiple rooms to chase him crawling from and as soon as he sees the stairways going up he shoots up them in seconds. It's refreshing and tiring lol.

I can tell the baby loves to be home, I told Nick this trip flew by and I am so sad that it's over. We got the chance to go to church, Brightmoor Christian Church - we miss you and love you so very much. Our church held us up in prayer brought us on stage so everyone could see the little guy they have all been praying so very hard for. I was filled with tears - it's overwhelming the love and support that awaits us back home. We are very blessed to have such incredible family, friends and an amazing church behind us!!!

I am going to miss my Christian so much.  I will see Nick a little more, but Christian needs to stay in Michigan and enjoy the holiday fun with his friends.  We are trying so hard to keep things normal for him as he too has sacrificed so much.

We are home!!! It's a whirlwind of mixed emotions being here - nothing feels the same, yet it is. Baby Nicholas slept through the whole flight so it was an easy trip for him and I. It was so great to see Christian running into the airport to greet us. Even though it's temporary, it's good to be with my family - all of us together again.

Deanna stopped by today to see Baby Nicholas - above is balloons and below is a gift from the Sienkiewicz Family - Thank You!!!

We ask that our friends say a special prayer for Kendal and for Ryken, Kendal is at U of M fighting AML Leukemia and Ryken is at St Jude and with a brain tumor called ATRT - both of our dear friends need their chemo's to be effective and both need prayers for true miracles.

Today we met with our Neurosurgeon while we are were Dr. Aldana, I already know we won't need to see him again but in the event that we would need a Pediatric Neurosurgeon - we met him today.

We went back and forth on what to do until the 19th when treatment starts so Baby Nicholas and I are heading tonight for the time off.  I wish we could just start so that we could just get home, but with 10 days off sitting here missing Christian and Nick didn't seem right and it's cheaper to fly home buying 1 ticket verses buying 2 tickets to get them here.

So excited to see Christian, its been almost a month - that's the longest I had have to go without seeing him. Attached below is a pic of our view during the day of the St. John's River.

Today we met with our clinic staff and Doctors while we are here.  Annie from the Florida Proton Center coordinates the visits from Nemours Children's Clinic and Proton. It's like having on call Doctors in case of fever etc. I am attaching a photo from yesterday in recovery of our boy.  It's so tough to see him sedated daily and watch him like this after. This is what I will see every single day Monday -Friday for 6 weeks here.

Dear God,

Grant me strength!!! Grant my precious baby strength that comes ONLY from YOU.

 

Baby Nicholas had his simulation today, the plan will take almost 2 weeks to be ready. Our start date we were given is October 19, 2010.  We have a clinic appoinment tomorrow and we meet with Neurosurgeons down here.  We are assigned a whole new team during our stay here on Friday at the hospital that will monitior him during treatment. He still has no eyelashes and he lost more of his eyebrows but still has a little hair left from chemo. It doesn't matter though he's still so beautiful to me! I am so proud of him he has endured so very much and still smiles - I love you my Nicky Bear!!!

We were suppose to have Baby Nicholas' simulation CT scan today but the proton machine is down and so we can not do it today. We still kept our appointment so we could sign paperwork and see the place and get everything ready regardless. Dr. Marcus met with me and told me that Nicholas' hearing and hormones will not be effected.  I asked if he needed to see the simulation before telling me that and he said no. So wow am I relieved about this!!!

Getting settled in to Jacksonville now and it is a city of BRIDGES ... well I hate bridges and really - I can't stand them.  I can't believe I have to drive over them daily! I am not liking this AT ALL! Guess God has me facing more fears even here .... I get the chills every time I have to drive over one with water under it! Joy! Though the bridges are beautiful to look at - I STILL HATE THEM!

The tour of the gantry's which is where the proton treatments are is like walking into a spaceship. It's bizarre. I will have to post photos soon so you all can see how crazy it is. Below is a photo from our balony at night, the blue is the bridge I hate LOL.

Today is the first time I have left Baby Nicholas since the PICU in May, leaving Nick to take care of our little guy for 2 days. I am heading to South Carolina to see Nicole and be with her family. I have never been to South Carolina, it's so different from anywhere I have ever been.  She picked me up from the airport, we grabbed lunch and then headed to her home where people filled her home, family and friends and knocks at the door from neighbors bringing dish after dish to her home.  I now know what southern hospitality really is.  I hung out with Miss Lauren, Nicole's 3 year old daughter and she's just a total doll.  Sweetest little girl dragging me outside and inside, then inside, back outside again. I was glad I got a chance to know her since the only time I saw her our children were always sick from chemo and counts were low so we never got to do anything together with our kids. She's an amazing little girl and so much like her Momma!

During my flight I read a book another mother from St. Jude gave me and it's called "God's in the tough stuff". I read a piece that was about David losing his baby and that he had said, "One day I will go to you, but you can not return to me".  I don't know why but during the flight I cried and I felt like I needed to read that piece about David to Nicole. The next morning during the service the Pastor said the exact same thing - that message is important and I am posting it because I know there are other families reading this right now that are fighting this same fight - this message tells us that one day we will be able to go to all our loved ones .... though they can not return to us ... and we have absolutely no control over anything - God is ALWAYS in control. The Pastor took the time to tell everyone that people have been touched by Baby Wade's life - the room was filled, and some of them were strangers to this family but knew about them and had been genuinely touched by this little child's life.  I pray people will not only honor Baby Wade, but all the children fighting cancer and will become more aware of what the simple little gold ribbon stands for and to give when asked.

Nicole, Wade and Lauren drove me back to Jacksonville after the service.  Felt like I had been gone longer than just 2 days.  I am going to miss little Miss Lauren!  Though I made sure Nicole promised to visit while we are here in Jacksonville.

 

People close to me know that through this journey one family, the first I met at St. Jude - the mother, Nicole became my sister.  Over the 4 months of treatments we spent hours texting, calling and checking on each other and were there for each other.  We share a bond that only someone that has experienced this pain can fully understand. I have been sleeping for a week with my phone under my pillow in case she needed me.  At 3:40am I got a text from her that simply said, "He's finally free". At 3:30am Jesus took Baby Wade home.  I cried for him, I cried for his Momma who fought this disease for her son with so much love and dedication. If you knew this child, you knew there was always something special about him, he always smiled and always laughed - his spirit was beautiful and gentle. So today, I will place this information up that his mother wants people to know and no doubt she will remain a warrior against childhood cancer, as we all should.

Her message:

This gold ribbon stands for Pediatric Cancer and here
are some unacceptable statistics

Over 12,400 children in the United States are diagnosed with cancer each year, 4,000 children will die each year.

Cancer is the #2 overall killer of children, the #1 being vehicle related accidents. It remains responsible for more deaths from ages 1-19 than asthma, diabetes, cystic fibrosis and AIDS combined.

It is estimated that approximately $1 billion in research is needed to develop a new drug/cure for each of the 12 most common pediatric subtypes.  Childhood cancer as a whole receives about $130 million/year in funding.  At that rate, it will take 100 years to develop these drugs and 250,000 children will die.

Childhood cancer research is woefully underfunded compared to adult cancers.  For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents.

1 OUT OF EVERY 5 CHILDREN DIAGNOSED WITH CANCER DIES.

Approximately 20% of adults with cancer show evidence that their disease has spread, yet almost 80% of children show that their cancer has spread to distant sites.

Cause of childhood cancers are unknown and at present cannot be prevented.

Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives four times the funding.

Several childhood cancers continue to have a very poor prognosis, including brain stem tumors, metastatic sarcomas and relapsed acute lymphoblastic leukemia and non-Hodgkin's lymphoma.

Every day 9 children in the US are diagnosed with a brain tumor.

Brain tumors are the leading cause of cancer death from childhood cancer.

There are more than 120 different types of brain tumors, making
effective treatment very complicated.

In general, children with Central Nervous System (CNS) cancer do not share the favorable prognosis of those with many other common pediatric neoplasms.

At this time, brain cancer research is underfunded and
THE PUBLIC REMAINS LARGELY UNAWARE
of the magnitude of this disease.

Tell people what you know about Pediatric Cancer.  Maybe one day this ribbon will be as recognized as the pink ribbon and no other children will have to endure what our son and so many others have.

We arrived safely to Jacksonville Florida around 9:30am and we are exhausted. Nick drove straight through the night and I drove the last hour in the morning while he and Nicholas cat napped in the back. We left Memphis around 7:30pm so with the time change is was roughly a 12 hour trip.  Baby Nicholas slept most of the way - this is the only way to travel with him while in a car. Aside from it being a long night for Nick - the ride wasn't too bad.

We are now getting settled into our temporary condo here in Florida, so that means we will be upakcing everything we shipped and heading out to stock up on everything we need while we are here. Long day!

We have no appointments until Tuesday at the Florida Proton Center so we have a little down time before a week of tests start.

Dear Lord,

Thank you for getting us safely to Florida and bringing us so far with such blessed improvements with Baby Nicholas - we are going to miss our St. Jude families and we keep them all close to our hearts and we ask that you continue to watch over all the children, they are all so dear to us.

Baby Nicholas had his line pulled today and a port placed under his skin that they will be able to access it with numbing cream when they need to sedate him or he has labs done. We are so glad he will not have those cords hanging out of his chest, better yet - NO MORE LINE CHANGES.  Wow these were messy, long and challenging and done every Monday, Wednesday and Friday every week since he got the line. So 4 months of that 20 minute routine that is no longer part of our day. We also had another ABR hearing test, but he had fluid behind his ear so it does slightly effect the read. I am not too concerned with this since they just did this test 3 weeks ago and it was stable. He had an issue with one of his fiducials bleeding but looks like everything is ok now.

We are getting on the road later and heading to Jacksonville!

Above is a Birthday present sent from Baby Nicholas' newly adopted into the family Auntie Nicole - the Ballew family sent for Baby Nicholas 1st Birthday - THANK YOU! He loved unwrapping it!! 

Baby Nicholas got his fiducials today, which I mentioned a few days ago and explained that they were placing 3 different screws in his head for mapping for radiation. The procedure was done at Le Bonhuer Children's Hospital here in Memphis. Dr. Klimo part of Dr. Boop's team placed them.  The procedure itself took less than 15 minutes. He woke up in a silly great mood and without the bandaids on his head you would have no idea he had a procedure done.  God continues to amaze us with how strong he has made this little boy!  He came back and ate well and is now resting. One more day left here in Memphis! Tomorrow Nicholas will have his Hickman Line removed and we will have a port placed under his skin so we will be done with cords and line changes (whewwww this is a lot of work for Nick and I to do) He will also have another ABR hearing test to make sure everything is still stable.

Dear Baby Nicholas,

We love you so much our little man and we continue this process daily with God's perfect hands on you. Stay strong my boy ....

We started today with an endocrine test, this test is done to see if Baby Nicholas growth hormones were affected from his surgery. These tests were 2 1/2 hours long and 4 different draws of blood while ever 30 minutes they pump different hormones into him to test his levels. They tested his growth hormone and they told us anything above 10 is considered good, Nicholas was 26. They tested his stress hormone, which I didn't even know we had- I told the nurse boy I wish I didn't have that hormone! (LOL) Anything 8 and up was good ant Nicholas was at 10.  So they are certain that neither hormone has been affected from the surgery or from chemo.

We had labs done today and his ANC is 800 and his platelets were at 54, that was low for him to have his procedures so they transfused him. We needed to wait until they cleared and they did more labs to make sure he was above 100.  His labs were 181 so now we are in the safe zone for his fiducials tomorrow.

 

Dear God,

Please bless our platelet donor today, whomever the person was that sat in a chair for hours to give this precious gift to our boy.  Please watch over our little man tomorrow during this procedure , let it go smoothly and quickly.

We had our RO appointment today with Dr. Merchant. Baby Nicholas was sedated for his CAT scan and MRI that will map out his brain for radiation. They will take the first MRI from Beaumont Hospital when he was diagnosed with the tumor and they will lay that MRI over the new one without tumor for placement.  On Wednesday he will have fiducials placed in his skull.  Fiducials are really small titanium screws that they place under the skin so that each day during radiation treatment they will do multiple xrays for may certain he is in the exact same spot so that no other brain tissue will be exposed to the radiation. They also use a mask that he will be fitted for today during simulation that locks him in while he is sedated so that he does not move during treatment.

Attached below is a gift from Auntie Kimmy and Uncle Mike and the boys for Baby Nicholas' 1 year birthday. THANK YOU!! xoxo

Dear Lord,

We pray today that you guide the radiologist so that only the area needed to cure Baby Nicholas will be affected.  That everything is in YOUR HANDS and that you gift Doctors with talents to be your physical hands .... Please keep our boy safe, never allowing this cancer or any cancer of any kind ever to harm him again. Everything is in YOUR PERFECTS HANDS!!

Today started off with bottles and sippy cups and Nicholas didn't want anything to do with them.  So we decided to try to spoon feed some stage 2 pears to him. After the first bite he was pointing at it for more!!! I can't tell you how exciting that was for us because we haven't really seen him eat in 2 months when we tried it and really he hasn't ate in 4 months total. So we are thanking God for bringing that swallow back, we prayed for months that this would happen and it did  - ANSWERED PRAYER!!! We didn't know if it would take days or weeks to get him interested but today he ate food 3 times and he did wonderful. So obviously our day was great because our son ate!!! We still are working on him wanting a bottle and or sippy cup but hoping that he will find interest in that soon.

Attached is a pic of the Baby Einstein videos and the Glow Worm baby doll that Baba and Dedo sent Baby Nicholas for his 1st Birthday ---- Thank You So Much!!! He LOVES baby Einstein!!!

Dear God,

Thank you Jesus our boy is eating, what a true blessing! We are so grateful he can swallow and that you healed him just before we leave here to go to Jacksonville.  We ask that you continue to heal his vocal cord and strengthen him daily .... THANK YOU LORD!!!

So we started a day with a call from Dr. Wright, she called to let us know that Nicholas' CSF (Cranial Spinal Fluid) was clear and had no cancer cells in it. They did the lumbar puncture yesterday during the MRI.  We did a barium swallow test today.  They placed Nicholas in front of an x-ray camera and we gave him food and different forms of liquid that has a contrast to show if it goes into the lungs or if it goes to the stomach. He was a hand full and it was a struggle. but we got the test completed.  He swallowed perfectly!  After 4 months to the day, our boy is now able to swallow!  This is such a blessing! There are some children that never get their swallow back or sometimes it takes over a year to return.  Our only problem is that now that he hasn't ate for 4 months - he doesn't want to now.  We know it will be a gradual thing and it wasn't going to be an over night transition. The one thing we sure have learned is patience. Everything about this process just takes time. Baby Nicholas is gaining strength daily and his ANC was 4,900 yesterday. He's playing and acting like an 1 year old and sporting that new bottom left tooth too!

Attached is a photo of a gift that Christy and Todd Bailey (Ryken's family) gave to baby Nicholas for his 1st Birthday. THANK YOU! A cute warm shirt, a hat and some socks! That hat in the photo on September 22nd post is that hat - too cute!

Dear Lord,

What more can we say but thank you with our hearts are filled with so much JOY over the last 2 days. We have no clue what our future holds but we are so very grateful for the moments you give us. Those moments are what makes life's struggles worth it all. With gratitude in our hearts - we praise you God.

Praising GOD!!!!! Nicholas' scans were clean and that means we are headed to Jacksonville for Proton radiation.  It is in moments like today that life can change completely, I have learned that through my other families here. Though I celebrate this MRI - my heart is also heavy for my friends that did not have good scans in the last few weeks. Today I will count my blessings.  So we are in the clear for the next part of treatment!  We have a long week ahead of us filled with tests etc. Tomorrow Nicholas will have a swallow study .... we pray he's able to finally swallow liquids.  Food isn't the problem so please say a prayer we get good results tomorrow too!


I want to thank everyone that prayed for our scan today .... there were so many of you texting me and letting me know you were praying for our boy - THANK YOU!

Also the photo included is a gift our friends Ginny and Baby David sent us for his 1st Birthday - Thank you!!!

ANC is 1000 and no more fevers!We are discharged - but not until the hospital staff came in and threw confetti in our faces and sang Happy Birthday to him! They gave him toys and balloons and a signed poster from all the nurses. He's also sporting his first bottom left tooth now !!! Big week for our boy.

 

Dear Baby Nicholas.

HAPPY BIRTHDAY BABY - your 1!!!! God's got his Hands on you my love. I sure didn't want to have your birthday in a hospital, but I am so grateful and thankful to God that you are having a birthday and it doesn't matter where! When we finally go home we will give you a real Birthday Party - I can't wait to take you home Baby Nicholas! You have been so very strong my son and we love you so very very much!

 

Dear Lord,

Tomorrow is the big day! Please Father give us our miracle and keep his scans clear and stable so we can pack up and go to Jacksonville for the next part of treatment!!!

Todays ANC is 200 and our last recorded fever was at midnight last night. Praying he gets through today without anymore fever. I can't get out of my mind that a year ago today I was packing to go to the hospital to have my boy. I couldn't wait to meet our little guy! What a year this has been - I never would have imagined living in Memphis at St. Jude and that my baby has spent 40% of his life fighting cancer. It's hard not to get sad, I have my moments and sometimes I am still in disbelief that this is really all happened. God has brought us so far in a journey I never saw coming - I am just going to try harder to trust the Lord with whatever the future holds. The last few weeks have been the most difficult weeks I have endured here watching families I have grown to love being told nothing else can be done, the reality of the monster that cancer is - is so real.  The devastation it brings to families is just catastrophic.

Dear God,

Please Lord give me the strength to keep going - I thank you for my Brightmoor family - my church that never stops praying for us! Sundays are my recharge days - God's constantly showing me his mercy and all the prayers everyone is sending to heaven - we can't thank you enough. We are so grateful for our family and friends that are always trying to follow up with us. Dear Lord, keep your hands on our boy as you always have.

So our ANC is 100 today and he's still spiking fevers without Tylenol so we have no clue when we are leaving.  All cultures are not coming back with anything which is GREAT ... because it is nothing serious but it sure is keeping us stuck here right now and we just want to get out of here..... the doctors told us 24 hours without a temp and we can leave but that's not happening yet. Praying for his ANC to go up tomorrow!

 

The longer we are here, mentally the harder it is for us.  It's tough being surrounded by sick children, they are hurting, sad, crying ... it emotionally drains you watching everything around you.

Oh and Nicholas has officially lost all his eye lashes from chemo.  Crazy enough you can already see all of them budding to grow back.... it's crazy how eye lashes and his loss of eye brows changes the way he looks -- though he is our beautiful boy - it just is a crazy process.

Day four - they didn't draw a cbc so we have no clue where his ANC is today. He was acting fine all day and then BOOM... 102.4 temp out of no where so more cultures and that's an automatic 2 days added on to our stay. Not happy.... I am going to go stir crazy ....If I am still here Wednesday I won't be happy, it's his first birthday and I don't want to spend it inpatient.

While walking with Nicholas and Nick we walked past Ryken and his family going to get a CAT scan, please people pray for our friend he's been so sick and we are worried about him.  Precious Jesus please watch over Ryken tonight - we ask you to heal him completely so that he can finish this round of chemo.

Day 3 at 0 ANC ... ah these days inpatient are the toughest emotionally.  Too much time to think and no clue when we might leave. It's so tiring siting in these little rooms ... we just want out! Here's the photo of our door to our Jude Jail Cell ..lol just kidding.

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