Help Nic & Brigitte Battle Back
Haven't posted in a bit. Nic and I spent the first 28 days in the hospital with severe dehydration, rashes, all counts down to o. He had fevers elevated for over 2 wks and lost a lot of weight and needed multilple blood , platelets transfusions and antibiotics. We are in our 4th round of chemo. His MRI is scheduled for Nov 2nd and will be hopefully decide on a transplant or resection of liver. I've been overwhelmed with Erica Schultz running this site for me and hosting my fundraisers..I can't thank her enough. I'm just asking for prayer's and strength as we approach this surgery or await transplant. So scary. Thank you all. People I dont even know..bless you from the bottom of my heart beyond words for your monetary thoughts and prayers. I'm grateful for all of you for so much strength you've given me for my sweet 3 yr old Nic. Keep praying and fighting this devastating disease these children have to endure. Love you! Nic's Mom Brigitte Evanoff
Nic's oncologist called, his AFP went down to 23 from 26. Rather see it back to 6. But, it's not going up either, so I'll take it. She said he seems to be taking a little longer to fight this round off, but nothing we can't handle together. He spiked a fever last night. I gave him tylenol. He just woke up so, we'll see how the day goes. Plenty of fluids and no admits please. God I pray. You got this Nic. We have bloodwork check-up on Thursday. Say a prayer the fever seizes until then. Change of plans on Make a Wish, social worker recommended The Sunshine Foundation and we are awaiting a call on that. Would love to bless Nic and our family with some fun outside our battle. Praying for healing and clear scans. Thank you all for everything you've done to get us through this journey. Xoxo
Hi, I just wanted to update everyone. Nic has finished his 6th round of chemo which is the regimen for Hepatoblastoma. We have one more dose of chemo left on January 11, 2016. We are so happy to have reached this far and wouldn't of done this without you all. I just want you all to know how much you touched our hearts throughout this process. The last 6 months has been unbearable, never knowing what to expect. I thank you all for all your prayers and continued thoughts for Nic as we hopefully are coming to the end of the light and cancer free. We are in the process to be honored with a Make a Wish. Nic really loves a lot of Disney characters and had grown to love them all. He would love to go to Disneyworld. He has been through many months of treatments and several hospitalizations due to his rounds of chemo. We would definitely love a break. I'm praying for clear scans come January 25th, 2016 and we can be free. Please bless my little fighter to make this happen and help us! Thank you so much . Nic is winning! You can help us too. Please share and help us make his dream come true.
GOOD NEWS!!!! THEY ARE REMOVING NIC'S TUMOR NOVEMBER 16TH. THE GOOD LORD HAS BLESSED US! The vessels are now patent as well on right side. God is so good! Thank you thank you thank you! I'm so happy I'm crying. Thank you all for all your daily thoughts and prayers for Nic. He has been such a warrior because of you all. I'm so grateful. My little fighter is one step closer to kicking cancer's ASS! YES!!! GOD IS GOOD! I'll know more in detail as it gets closer to surgery.
A little good news. Nic's AFP level is down from 62.9 to 30. That is awesome. The CT of chest showed no nodules and still some collapsing of lung which they are not concerned about. It showed improvement of hepatic mass. Yes!!! It shrunk more!! All his labs were good as well. MRI is still pending of abdomen and pelvis. The tumor board meeting is at 3:30 tomorrow. So, patiently waiting on that call! Thank you all for continuous prayer's! Lord please come through for us! Holding on hope!
Thanks for the information!!
I'm writing a check for someone to bring to the spaghetti dinner. Who should it be made out to?
Ok, after the 12th day. Nic is doing much better. His wbc is back down to normal. Hb is 9.2. Fight Fight baby! Platelets are up to 235,000. Now he can have motrin. AFP levels came down from the beginning it was 700,000..last week it was 150,000, this week...24,000! Go away cancer!!!! Entrovirus is negative. Blood cultures from the fifth set are all negative. Consulted ophthalmologist and it was negative, no nerve inflammation. Taken off all precautions. Dermatologist has no concerns to do biospy of rash. Echo showed no signs of infection and port is good as well. Doing another one to check vessels around heart. Liver functions are good. 48 & 68. Rash is going away. Fevers are spreading out 12 hrs apart. I'm so proud of him. They are trying out some steroids today to see if it helps. He needs to go 48 hrs with no fever, show hes eating a bit and drinking then we can go home and take a break for a few days before starting the 2nd cycle. I think we are heading in the right direction don't you? Our prayers are being heard. So, he had a bath today. I'm working on getting him to try to eat something and get motivated. He's still pretty weak and hasn't gotten up. But, he's been through so much I don't blame him. A big hug and thank you for all your love and support! It's working. Kids are so resilient. I'm so excited to see him finally have some light at the end of this cycle. Keep fighting and praying for us!!! Love you all!
Update 12p.m. August 10th: Echo today again.They want to check his heart for anything that that potentially is being missed by blood work/cultures. Dermatologist consult. Nic spiked twice over night. They are baffled why he's getting fevers and so am I. Cultures are coming up negative with every spike. Rash seems to be fading some but slowly. WBC doubled from yesterday. HB 9.6. Platelets are good. I want to move on. What a roller coaster ride from hell. Talking about maybe a biopsy of skin rash. Never heard of that. Ugh. Come on! This is unbearable waiting and waiting.
Update 7a.m. August 10th: I will have somewhat of a plan soon for the day when the Dr. Rounds. I just wanted to take a minute and thank all of you who have donated to the go fund me page. I've estimated my bills to be approximately 22/2300.00 a month. That's everything plus food & gas. After Oct 6th when my FMLA stops I will start using it to keep the roof over my head. I'm trying to take off as long as I can afford to until Nic DOES beat this cancer and become healthy again. If you can Erica Schultz, please keep it open and please everyone keep sharing or donating if you can to help me & Nic keep all what I've built up for him thus far. I really appreciate all you've done. Prayers, likes, thoughts, texts, calls. Just telling me you thought of us today keeps my spirits up.It makes me who I am right now. A strong mom for Nic. I am not the type to ask. I'm always a giver and have been all my life. Those who know me know that. I know we all have struggles and I don't expect you to just donate. But pray pray pray. It's very powerful. I've felt it. I love it and I want to continue feeling it. I want my son back and my life back. I want to go back and work with my wonderful family whose always had and has my back. So, Please. Keep fighting and spreading Nic's fight not only for him but for us to be happy again. Thank you all! Love you dearly. BRIGITTE & NIC
Update from August 9th: I don't really have to much to update today being a Sunday ya'll in the medical field know we wait till Monday for any results if any. Nic has been pretty irritated today. He's had no fever (knock on wood) since noon. He's drinking sips here & there but no food yet. Still doesn't have enough energy to get out of bed. He still has rash pretty bad, it's changing to a more patcher red all over. Vitals are stable. I got to go home to shower and barely got through my front door. Nic has tons and tons of gifts from you guy's. I brought some up for him. Thank you Michelle Moning, Warren Berry, Michelle Umm, Amy Stanley, (Brownstown Radiology) again! I can't wait until he's up for play. I'm sure I forgot a few people. I hung all his cards on my wall of love from the past week too. I packed more clothes for us for the week. If Nic is well enough we start 2nd cycle and it's 3 days here. So I probably won't be going home anytime soon. Docs are running out of things to test for and believe it may be a reaction to antibiotic. Please continue and I know you will, to pray for Nic & I. Love you all. Hanging in there tough!
Update from July 17th: OK guys ! Here's the news. Nic has been diagnosed with stage 3 hepatoblastoma. It is not in his kidney. They repeated ultrasound, CT scan and MRI and biospy here at childrens and it showed no spreading into lungs. It appeared on the scan in the lungs because Nics scan of lung was done after MRI and he was severely sedated and they were mislead due to his lungs being collapsed from sedation to look like white matter. It is considered stage 3 because the tumor is on his whole right side and includes the portal vein that connects the good side of liver and bad side and is not removable at this time. The goal for now is to start chemotherapy to shrink the tumor with 4 different medications within the next 18 weeks. 6 cycles. ..Each cycle is 3 weeks. 2 days of chemo and 3 nights at hospital each week. After the 4th cycle, an MRI will be done to hopefully see if it has shrunk enough to remove tumor. If successful, 2/3 wks of revovery. Then finish 2 more cycles of chemo. So. Hopefully, that is the case. If we can't shrink it. After 4 cycles and get it out, he will continue chemo and be put on liver transplant list to receive a new liver. He received and echo, hearing test and bloodwork today for a baseline before chemo starts. I feel a lot better with this news. Even though he has cancer. It looks like they have a awesome treatment plan in store for me and I feel their doing a wonderful job. I have had the worst 4 days of my life. I don't wish this on anyone! With that said, hope I didn't miss anything. The doctors were in my room for over an hour. I want to thank all you guys for everything. You have gotten me past this first start of a long journey with fighting childhood cancer. God Bless all of you and I mean it from the bottom of my heart as well as Nics. If I have any additional info. I will keep ya updated. Love you all! Love Nic & Brigitte
OK guys ! Here's the news. Nic has been diagnosed with stage 3 hepatoblastoma. It is not in his kidney. They repeated ultrasound, CT scan and MRI and biospy here at childrens and it showed no spreading into lungs. It appeared on the scan in the lungs because Nics scan of lung was done after MRI and he was severely sedated and they were mislead due to his lungs being collapsed from sedation to look like white matter. It is considered stage 3 because the tumor is on his whole right side and includes the portal vein that connects the good side of liver and bad side and is not removable at this time. The goal for now is to start chemotherapy to shrink the tumor with 4 different medications within the next 18 weeks. 6 cycles. ..Each cycle is 3 weeks. 2 days of chemo and 3 nights at hospital each week. After the 4th cycle, an MRI will be done to hopefully see if it has shrunk enough to remove tumor. If successful, 2/3 wks of revovery. Then finish 2 more cycles of chemo. So. Hopefully, that is the case. If we can't shrink it. After 4 cycles and get it out, he will continue chemo and be put on liver transplant list to receive a new liver. He received and echo, hearing test and bloodwork today for a baseline before chemo starts.
Nic is in need of strength at this very moment. Brigitte just let me know his pain right now is intense... not only at the surgical site, but his throat (from the breathing tube) and his tummy hurts. Please stop what you're doing and send a power prayer up to the Lord for comfort for our little angel.