The Journey to Diagnosis: Updates from our eyes, 9/16/16-9/22/17

9/15/16  Running tests on Nick. An unncertain condition has been found and he is needing to be referred to a hema/oncology specialist. Please keep us in prayer as we try to figure out what’s going on.

3/20/17  Please keep the boys in prayer. In the surgical suite to have a liver biopsy done followed by an esophageal scope of the abdomen and possibly banding esophageal varices all under general anesthesia. I have 2 children to worry about, one right after the other, so i ask for comfort and please please pray for no complications.

3/20/17  (From Heather)   Keep my “little” 17 year old brothers in prayers this morning!! Simple procedure for today, and it’s the positive results we’re praying for! Thank you Lord for the plan you have 🙏. Stay tuned for possible blood drive info to come. — at Ochsner Medical Center.

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8/25/17  MIDNIGHT  (From Heather)   I’ve been in hard prayer these last 21 Days for healing over my brothers, please join me and pray as we’re spending the next few hours in the emergency room 🙏🙏🙏 Please consider being an organ donor. You never know whose life you can save when yours ends.  There are more than 116,000 people that are waiting for an organ, and millions of people die every year without donating organs or tissue. Educate yourself and your children on the importance of being a donor, and please consider the lives you could change.   https://www.dmv.org/organ-donor.php

8/25/17  (From Heather)   And we’re still here. We will be here until Monday now. Thank you so much for your prayers and texts. The doctors have some leads and ideas, and are putting in orders for additional tests as they navigate through this disease.
The hardest part is for my mom, or any mom, to get to watch your child get sicker and sicker, unable to do anything because he’s “not sick enough yet” to qualify for a liver transplant. There aren’t enough to help everyone that needs them, so the sickest bird gets the worm.  They are running Vitamin K through his system, and are just working one thing at a time.   God is good. He is with us. We are walking in faith, and know that our lives are in His hands. We just pray for clear tests, wisdom in the decisions and reading of tests, and favor of God to heal his body-and to protect Devin from going through this as well. Thank you Jehovah Rapha – The Lord our Healer. We know you are working in Nick and while he can’t see it yet, and he’s feeling frustrated and exhausted, we know that you are taking care of him and have it ALL under your control. 🙏🙏🙏

— at Ochsner Hospital For Children.21032496_10212304559863573_6857507053922520967_n

 8/26/17  Shower. Walk. Yahtzee. Celebrating the wins. Thank you Lord 🙌🙌 #prayedup #keepwinning — at Ochsner Hospital For Children.

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8/27/17  Please keep my Nick in your prayers tonight and in morning. God knows our need. Just help lift him up to our heavenly father for healing. Thank you.

8/28/17   Update. They informed me that they want to do an MRI to get a more precise image of the liver for bx and surgery might be postponed until tomorrow. We’re hoping not because Nick has been here since Thursday and ready to go. I’ll keep you posted.

8/29/17  (From Heather)   Thanking the Lord this morning for His hedge of protection over Nick. There is a whole team assigned to his case, and while we knew something like this could come, it was not suspected this quickly or in this way. Devin is here to support his brother, but please pray for him too. They have identical situations, and I know it’s scary for him to watch, and wonder, how much time does he have before it’s his turn.  What an experience for these 17 year old baby brothers of mine. But I pray God uses this time to speak into their hearts, comfort them and give them peace and confidence that HIS plans are ALWAYS GOOD. He is behind the wheel, navigating us the through every step.   Nick will be under general anesthesia in just a little bit, and we will be here waiting for him. BOLD prayers of favor in lab results and biopsy. And we KNOW his liver is on it’s way. And he WILL be healed in Jesus name. Thank you Lord. Amen 🙌

8/29/17  Nick is out of surgery and in recovery waiting to wake up. Now it’s the wait for the results of the biopsy in a couple of days. Thank you all for your concern and prayers.

8/29/17  (From Heather)   Quality time with my brother ❤️ Slumber parties 🎉 We just want to thank you ALL for your prayers. God is moving. He knows what He’s doing 🙌🙌🙌 We’re standing together in agreement for complete healing and strength. While we’ve been in the hospital, someone had the nerve to break into my brothers room window at home and steal from him. We all have felt hit after hit but we continue to stand and receive the blessings as they come, no matter the trial we walk through. #glory #amazinggrace #getunderourfeetsatan 

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8/31/17  Biopsy results for Nick are in and its not good. I will be contacting family first then will contact people personally. Just asking for prayer. This is a very serious life changing day for us. I’m asking that all of my dear friends please pray for Nick. This was hard news for such a young man to hear at this time of his life and I’m so very sad and sorry that my child has been given such tragic news. Please pray for God’s comfort, protection, and a miracle healing. God is a miraculous healer and I ask that everyone lift Nick up to our All Mighty God. Thank you.

8/31/17  Pictures of Nick today. He wanted to go outside to see some sunlight after being cooped up inside 4 walls of the hospital for 6 days. It’s the little things we take for granted.. smelling the air, feeling the sun, and watching life. Love the moments you have and take a deep breath of air. It’s wonderful. #lovemynick  21151529_10211352706066470_6547334339352255774_n

8/31/17   Thank all of you for the messages. I haven’t read through all of them yet but will. We are just settling in from an extremely emotional day but I have to share something that has happened. While Nick was in the hospital, he left his bedroom window unlocked and someone took advantage of that and broke into his bedroom and stole his PlayStation and controller. I slept one night at the house and Heather stayed with Nick at the hospital. I woke the next morning to get fresh clothes for Nick and noticed his door was locked. When I got to the hospital I asked Nick why was his door locked and he said he didn’t lock it so that grew suspicion. Heather then came home that next day to sleep here at the house and went through his window and found grass particles on the bedspread and found Nick’s PlayStation and hand controller gone. Someone took full advantage of knowing that Nick was not home and hospitalized and robbed him while away. Heather contacted the sheriff who came out and made a report and finger dusted the door knob and other places in the room to hopefully catch the person who came in this house while people were sleeping. Now that Nick is home Devin took $243 out of his account and is using all of his money that he had and took his brother tonight to go buy another PlayStation for him. That is true brotherly love. I am so thankful that these brothers are getting closer as they get older and Devin has such a compassionate heart to take his brother who is very sick to go replace what was taken from him. I thank God that I have compassionate kids who have a good heart.

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8/31/17   (From Heather)    THANK YOU all for your prayers. My brother is home tonight. We weren’t sent home with great news. Not at all. BUT we will fight these next few months and stand together in FAITH that he will overcome 💪💪💪🙌🙌🙌
My brother Devin just came to pick Nick up and surprise him. He’s using his paychecks he’s been saving to buy Nick and new PlayStation to replace the one stolen from our home while we were at the hospital. I LOVE my baby brothers. And to see them sticking together as they fight for their life, it’s just amazing and so humbling.   My mom and I are discussing a possible fundraiser for Nick and Devin to raise money for this journey and to help keep Nick as comfortable as possible.  We are still processing and will reach out to all of you. THANK YOU ALL. WE LOVE EACH OF YOU ❤️
#makeawish #longjourney #Godswill

9/4/17  Good day so far. Enjoying my time with Nick. Time is short though bc he gets tired real easy but we enjoy the time we have. Maybe beach at sunset later.  Gulf Shores Mini-Vacay

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9/5/17   I guess it’s time to share with Nick’s permission what his diagnosis is. It has taken some time to soak in and we are still trying to accept but Nick has been diagnosed with a very rare cancer called angiosarcoma. It’s cancer of the inner lining of the blood vessels. It’s a very rare and difficult cancer to treat and the doctors said less than 1% in our country have it. The pediatric oncologists at Ochsner are consulting with other physicians across the country to seek everyone’s knowledge and experience for help. It’s also very unusual for his age to have this as it’s usually seen in 60-70 yrs of age, therefore, we all have had genetic testing this last week to see where it may have come from. It originated from his autoimmune cirrhosis of the liver (which his brother has too) that was diagnosed in March which is what led many previous trips to Children’s and now to Ochsner Jefferson since last September. He has 3 liver lesions and one was biopsied in six different spots last Tuesday. We got the results of that Thursday, August 31st. I feel like my nerves are shaken inside right now sharing this as I’m still trying to cope with it all. I have to be strong for my son but he’s scared and it kills me that he (such a good young man) has to go through this. The doctors aren’t feeling too reassuring and said it’s a very progressive cancer and told us Nick could have 6-12 months or even shorter without treatment. He has two spots the radiologist called “ground glass opacity in the lungs” which may also indicate lung cancer. He goes back to Ochsner this Thursday to have a PET scan done to check for cancer throughout the body. I know this a lot to hear and you can imagine how we felt when we got the news. Our world has changed completely from both boys needing liver transplants due to the autoimmune cirrhosis (their antibodies attacking it’s own liver) to now one having cancer. Devin’s MRI last Thursday showed no lesion growth and will be followed up, however, he does still need a liver transplant in the near future and hopefully soon enough before he develops cancerous lesions too. (Please consider singing up to be an organ donor if You haven’t already. You can’t take it with you when you die, so why not give someone else, such as my boys condition, a chance to continue life). It’s a lot to process and I apologize for taking this long to update everyone but we had to have time to ourselves and also Nick being okay with me sharing this. I will be creating a separate public fb page on Nick’s behalf to update his health as we go along and will share that link with all of you once it’s made. We thank each and every one of you for your prayers, love, and sweet messages posted. Please continue to keep him and Devin in your prayers as both my twins have a long journey ahead of them and the uncertainty of things has my family naturally feeling scared, hurt, and worried. Thanks for everything and sharing your love. Our faith is held strong through our heavenly Father and only He knows what will come out of all of this in these next months, but I completely trust in Him for He himself has said, “I will never leave you nor forsake you.” — Hebrews 13:5.

9/7/17  Good news to report! Nicks PET scan doesn’t show metastasis to the lungs! Praise the Lord! Now on to being placed top priority for liver transplant. Chemo may be needed beforehand depending on how long it takes to get a liver and will definitely get chemo 8-9 months after the liver transplant due to the aggression of this cancer. This is good news! If his cancer had spread to other parts of his body that would’ve knocked him out of getting a transplant because if your terminally sick elsewhere you won’t qualify as livers are short in supply. Thank you for all of your prayers! We now continue on in getting the liver transplant done. All Glory Be To GOD! Still a road to travel ahead as we get rid of this sick liver but the news could’ve been a lot worse. Thank you and continue praying for a liver to come soon. Thanks for all of your support.

9/14/17  Update on Nick. After many meetings, the transplant team here at Ochsner Jefferson feels that it’s best to have Nick referred on to a transplant team in Houston, at Texas Childrens Hospital. All of his records have been sent and he is scheduled to have many tests and more consults with the surgeons there. We have to be there Monday at 7:20am to get things started and we are required to stay through Wednesday on an outpatient basis. I don’t know what will happen after that. I don’t know if they will then admit him and wait for for a liver and go right into surgery or not. This is happening so fast and I don’t know what to expect. I will be updating again soon. Thanks.

9/17/17 (From Heather)      When you look at this picture, I just ask all of my friends and family to say a prayer over my brother Nicholas’s body. My mom and him have just gotten onto the road to head to Houston Texas to bring Nick under the best care possible. He is in a lot of pain. This lump is growing we are not sure if it is the cancer, if it is his liver, we are unsure at the moment and just ask for you to join us in prayer for safety over their trip and for the doctors to be gifted with the best wisdom and provision possible. We laid hands and prayed over him and I am asking for you to join us.  We are working on a way to keep you all updated as we embark on this journey. We do know our God is the God of miracles and we are trusting in him every step of the way.

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9/17/17  On our way to Houston. Please keep Nick in prayer and I will be updating as we go along.  21557906_10211475486815912_1638562703425126867_n

9/18/17  Houston, TX   Lots to do today. Each day thru Wednesday has an agenda like this. Nick was in a lot of pain this morning as he couldn’t take a pain pill bc he couldn’t eat for the u/s. Had to wheelchair him back to the car. Parking here at hospital charges by the hour. Paid $10 to park for 3 hours. I can see how expensive this is gonna get. The liver transplant specialist told us to plan on staying in Houston at least 30 days post op. Feeling a bit overwhelmed. God please sustain us through all of this. It’s a lot for Nick and he’s feeling very negative. He’s now resting and medicated until the next appointment time.

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9/19/17  Nick was diagnosed with angiosarcoma 08/31/17. He has 3 large lesions in the same region of his liver, aka hepatic angiosarcoma as you can see the rapidly growing mass in his stomach in the picture in comments. We’ve got to move fast in getting a liver because this ugly cancer isn’t messing around. Please pray they say yes to him getting put on a liver transplant list ASAP! After this 3 day transplant evaluation we should know sometime Wednesday. Ochsner Jefferson referred him on…please pray TCH is our answer and doesn’t deny him for any reason. He needs help NOW and I’m hoping and praying they will give my Nick’s life back. He’s almost 18, has a 3.8 GPA, and has big dreams to attend Texas A&M Engineering school. Please God make this happen.

9/20/17   Well, today 09/20/17, I got the worst news a mother wants to hear. I was called back to the hospital for a meeting after the transplant team (surgeon, oncologist, liver doctor, radiologist, and other transplant specialist) had their consult regarding Nick’s condition. Their decision, no liver transplant because the cancer has spread to the outer regions of the liver. I can’t tell you how hard it was, with a room full of physicians, with no hope in their their eyes, tell me that there is nothing they can do. The radiogist showed me the PET scan that showed more lesions, one above his spleen, one under the stomach in the abdominal wall and another in the fatty layer of the liver. Because of Nick having an incurable, aggressive cancer, he can’t be given a liver. It was the hardest news to hear that my son is terminally sick. After an hour of being counseled by some of the best physicians, sharing my heartache and tears, I left feeling numb and at a loss for words as I knew I had to then go home to tell my son who was anxiously (worried/curious) waiting to hear what they said. Why God? Why does a mother ever have to tell her own son that there is nothing they can do? I can’t begin to tell you how much this hurts as a mother who gave birth to beautiful identical twin boys, and Nick who had big ambitions in life to be successful, and always be able to take care of his mom, now know that that hope has just been crushed. His bright future has just been stolen by a horrible, incurable cancer. I told Nick that I’m not giving up on him. As a mother, I will do everything I can for this young, sweet man of mine. He’s not ready to die and I’m not ready to let him go. This is killing me as I write it but I felt it was important to share with all my friends and family who have kept up with everything in the last 3 weeks and for the many prayers that have been spoken. I have made an appointment with Nick’s oncologist at Ochsner Jefferson for Friday so that we can discuss further what to do at this point. I will remain hopeful and all I can do is keep Nick hopeful. I will not let my child suffer in depression knowing that there is no hope. He wants to blame himself for the news that he got because he said he didn’t pray enough to God. I told him that God would never do that. I said God gave us today, he will give us tomorrow and he may give us a year or even five years. We are to be thankful and cherish each day he gives because NO ONE is promised tomorrow. I know I’ve been asking for a lot of prayers, but please continue to pray for our whole family as this is a very difficult time.

9/22/17  We made it back from Houston yesterday evening and followed up with Nick’s oncologist at Ochsner Jefferson this morning. After a lengthy visit with the doctor we have decided on a plan to start a port placement on Monday and start a low dose of chemo on Tuesday to see how well he tolerates it. It will be chemo once a week for 3 weeks the next week off and then chemo once a week for the next 3 weeks and a week off. At that time we will see how his cancer is responding to the treatment. Of course all of the precautions have to be taken as a chemo patient. Nick now has restored hope again knowing that we are trying to find something that will fight it. This is a long journey but it is worth every minute to save Nick’s life. Let’s just pray for miracles that this type of chemo he will be getting will eradicate the cancer and hopefully give him the chance to be eligible again for another liver evaluation and transplant.

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