Heavy Heart still filled with Hope (My Nick Email tonight)

Dearest, dearest prayer warriors,

I wish I could sit across from each of you and share about today face to face. It is so difficult to type the depth of our emotions at this time – the incredible sadness mixed with supernatural peace that fills our home.

First, I want to share about our weekend. Olivia had two basketball games on Saturday in Morehead and Nick decided at the last minute that he would go along for the games and meet Evan there to ride home with him from college! I was so excited! I wish you could have seen the faces of the parents from Olivia’s team (especially Hope’s!) as we walked into the gym and Nick climbed the bleachers to the top! It was such a great day! And to top it off, Olivia’s team was down 11 to 2 and made a comeback and was within 3 points with 53 seconds on the clock and Olivia shot a 3-pointer and tied the game 15-15!! We ended up winning by two and then beat them again in the second game. All of the girls played great, but I was so thrilled that Nick got to see Olivia do such a great job!!

Secondly, Nick went to church for the second week in a row, and I was especially thrilled to notice that Nick was singing during worship. Last week he didn’t sing, which was fine, but I just remember how much he used to LOVE to sing praises and it just made my heart jump to see him singing again! Sunday night the youth group came to our house again! I stayed busy upstairs and let Nick have some normal youth group time without me in the room. Tim was gone to Olivia’s game in Huntingon….she is totally into basketball as you can tell! After the kids left, we loaded the van and Tim, Nick, Donnette (a good friend of mine), and I left for Cincinnati. Mom wasn’t able to go with us for the first time in soooooo long, because she had made a commitment to sub all week as a bus driver for someone who was going to be gone and had already learned the route and everything. It was very strange not having her with us….we missed her. We also had a very special traveller with us…….Sammie Back. Since we were going to be staying with her parents for the night in Cincinnati, her grandparents, who go to church with us, asked if we could take her back home for them. We were thrilled! Sammie is one of the sweetest, most polite little 6-year olds I have ever met. She was such a great little travel buddy. We arrived at Jarrod and Melanie’s around 11 p.m. and were able to meet a friend of theirs, James, who will be leaving for Iraq early next year more than likely. Please keep him in your prayers along with all of our military personnel. What a commitment to our country! We slept wonderfuly, and woke up to the smell of bacon! I stumbled to the kitchen and sat down at the table. As I was sitting there, Jarrod introduced me to “Chris,” another friend who had come by their house as well. It was so nice to meet these two guys and know that I will now share life with them through Nick’s email prayer list! Welcome, James and Chris, to our world.

We left for the Kenwood MRI office around 8:30 a.m. (so much better than 5:30 in the morning with the threat of fog on the AA Highway!) Thank you, Jarrod and Melanie, for opening your home to us! You are great hosts, and we are so thankful! The plan was for Nick to have an IV started here so that they could do the contrast for his MRI and then leave the needle in for our trip to Children’s main branch for bloodwork. We are so happy when they got the needle in on the first try and it had a blood return, but as the nurse was preparing to tape it, she accidentally pulled it out! Ugh! She looked and looked for another vein and then after finding one discovered that their branch was totally out of tubing, so Nick had to go with just a needle for the contrast and then the knowledge of another needle coming at the hospital. He handled it all beautifully!

When we arrived at the hospital and were called back to a room, we waited for a bit and then Maureen (our nurse practitioner) came by to see Nick. In a while she came back and said they would really like to go ahead and put in an IV in case Nick needed a transfusion. This confused us and Nick was not happy. He didn’t cry, but I could tell he wanted to. I really wanted to, too. I went out in the hall to find her and see if the needle would be as small as the contrast needle and when I did find her I asked why they thought this. She said she thought Nick looked pale and that she couldn’t look me in the eye and tell me that Nick’s MRI looked good. She said that Dr. Fouladi would want to talk to me and Tim alone. I had to keep my composure as I returned to the room and gave Nick an update and then I motioned for Tim to step out and told him what she had said. We stayed in the room a bit, and Nick decided he didn’t want Emla cream. He just wanted to get it over with just like he had in the morning. Maureen came back to do a physical at some point and was very pleased with Nick’s strength. Tim kept making eye contact with me and saying, “Stay strong,” because I guess he could sense in my face that I was slipping. I held it together until they took us to the room next door. While they talked with us, we had some in and out conversations with Nick’s nurse and determined that they would just do a finger prick and if Nick did need a transfusion we would just have it done at Bellfonte tomorrow. I am sure I am missing details here, but that is the gist of what happened. Anyway, Dr. Fouladi had print outs of Nick’s MRI and she was so nice as she explained that the cancer is simply growing very, very rapidly and she fears that doing more chemo will make Nick’s blood counts drop so low that it will cause other complications that are not good. The cancer is in his spine in a lot of places. It is all around his brain and going down into his brain….there is a blood clot at one place at the top of his brain from the cancer. Saying all of this, she is AMAZED at how Nick is doing! He rarely even uses Tylenol for pain, and he is totally funny and full of conversation. He is a miracle right this minute, honestly1 I kept from crying for a long time, and even as I began to ask questions, I said, “I don’t want to cry,” and she said, “It is okay.” I think that was all I needed to hear.

After she had talked with Tim and me, she wanted to talk to Nick. She sent me to the bathroom which I couldn’t find. I was walking down halls trying to hide the fact that I was crying and every door was an office. I went back the way I came and one nurse practitioner was coming out Nick’s little hallway. I said, “I can’t find a bathroom,” and she took my arm and turmed me around, and it was right in front of me the whole time with the door open. She just said, “Love your heart.” I went into the bathroom and literally doubled over sobbing. It was awful. I regrouped as quickly as I could and had another NP get my purse so I could powder my face…I hate when nick sees me cry. He is such a trooper.

Dr. Fouladi told Nick that there was definitely tumors growing and that she feared doing chemo because of his blood counts. We left it at that with him, and he said he didn’t have any questions. Tim and Nick went on out to get the van and then to pick up me and Donnette. Donnette waited in the waiting room while Dr. Fouladi pulled me into a patient room with a curtain and shut the curtain. She is so precious. She looked me straight in the eyes and said, “I want you to know that you have done EVERYTHING possible and right for Nick. I do not want you second-guessing yourself in the middle of the night. If you do, I want you to call me anytime.” She hugged me and we both cried….again.

When I got in the van with Nick and Tim it was amazing. Nick was all set to stop at Graeters for ice cream and then he wanted to go home through Lexington and eat at the Good Foods Market Cafe!! He was in great spirits…..he said, “Well, we have some things to look forward to” and then he started listing upcoming tv shows and football games. It was unreal. Later when he got sleepy he said, “I’m tired. I’ve been up since 8 and gotten bad news three times today.” Then he took a little nap. He just keeps such a great spirit about everything. I truly think there are angels all around him strengthening him and bringing a peace that passes understanding. That’s all I can think.

I couldn’t call mom. I knew I wouldn’t be able to hold myself together. We texted back and forth for a long time, and I just ached for her not being with us, because I know how hard it is to NOT be with Nick when he has medical procedures much less receives troubling news. I love you, Mom!

Tonight Nick watched part of the football game while Tim helped Olivia with homework. Then after realizing that her backpack weighed 19 pounds Olivia decided she wanted a backpack with wheels. We knew we had one, but I did not know where it was. So I spent time in the attic and outside in the dark in a shed with a flashlight. Finally, after running out of places to look, I started back through the closets for a second look and sure enough I found it in the very back of a closet behind clothes.! Honestly, a backpack with wheels was the furthest thing from my mind, but in Olivia’s world it was huge……balancing normal stress with the stress of Nick’s cancer is so hard for me sometimes. We then all sat down to watch The Amazing Race which we taped last night and Nick loves to watch! It was a great mind-releaser for about an hour. Nick was pretty tired after that, so I came on up with him to sleep. He is sleeping right next to me, and just the sound of his breathing comforts me. I was suppose to sub tomorrow, but I just can’t. Erich is still going to come and hang out with Nick and I am going to try and get a few projects done for school if I can. I am going to try and sub Thursday and Friday while Tim is on fall break. I hope I can do it.

Tonight my eyes are swollen and my head is pounding. I am so tired. I just knew I would be a waste of the county’s tax dollars tomorrow. As I lay here tonight, I have to try and find the words that are somehow tangled up in my mind.

First, NICK IS A MIRACLE!!!!!!!!!!!!!!! He has defied the doctors time and time again. Even in July of this year after looking at Nick’s petscan, Dr. Fouladi said that Nick should be incapacitated on a morphine drip already. Now, she is just blown away. And the fact that the big tumors are growing “out” rather than “in” means that Nick is still here with us! Thank you, Lord! Oh, I still pray for a miracle. To wake up and see Nick’s head perfectly round………………I just believe God could do it if He so desired. I do not undertand God’s plan. I truly don’t. But, I do believe that God is with us…………always has been, always will be!

Second, WE NEED YOUR PRAYER!!!!!!!!!!!!!! More than ever. My eyes are starting to fall asleep as I write, so I will write more tomorrow. God is still on His throne. Nick is still His child. My heart is breaking tonight and yet I refuse to stop praying for a full-blown miracle. Please keep praying with us. Oh, I love you all so much, and as Dr. Fouladi said today, “Only God knows the time for Nick…..no man…..” Isn’t that true of all of us? I guess that is what is keeping me going is the reality that NONE of us knows about our tomorrow except for our Creator and He has everything “under control.” I love you all so much, and I have a favor to ask you.

If you have time, can you write a letter to Nick (not saying anything about this latest news) just simply telling him how his life has impacted yours…………. I want him to know how his life is impacting others (present tense) all over the world……..

Nick Nischan
100 Academic Parkway
Box 2051
Grayson, KY 41143

Thank you so much,Love and blessings from our home to yours,

Oh, I am just getting started on “facebook” as another way to share Nick’s story, and I want to tell any of you who may have me as a friend that I am sorry I do not know much about accepting invitations, planting things in a “garden,” writing on a wall, poking, etc……shew! I am definitely a novice! Love you all! Thanks for being patient.

17 thoughts on “Heavy Heart still filled with Hope (My Nick Email tonight)

  1. Nischan Family,

    Your Miracle Is Coming, I Just Know IT!!! Everyone is right, Only God knows Nicks future. I see lots of smiles, hugs and lauging!!!
    You are in my heart forever!!

  2. Tammy,

    I really don’t have the words to say how very much I love you and admire you. Your strength and Nick’s strength… it’s amazing to watch and listen too. Yes, even in tears there is great strength. I can see the Father holding you in those times and weeping with you. I pray that you will continue to feel His arms around you and know… tears are a good part of the process. If you couldn’t cry?! SHEW! Imagine all that emotion bottled up inside! NOT a good thing! =)

    I love you Tammy and will definitely be praying for you and your family as I always do. Thank you so much for your posts/emails and friendship.


  3. Tammy,

    My tears are flowing for you and your family. While this is not good news – I know who brings good news and I will continue praying for that miracle for Nick! He is an amazing young man and has already touched so many people in his life!

    blessings & prayers today,

  4. Oh my Tammy!! My heart felt your every ache as I read your words. To experience something yourself is one thing, but to go through it with your child is a totally different thing. Your strength is amazing!! Maybe “getting lost finding the bathroom” was all in His plan to give you more minutes?? I love you girl!! Have you thought again about Barrow?
    Love you Lisa


  6. Tammy,

    Oh how I wish I could hug you.

    It would be an understatement, to say the least, that I would have any idea as to what you are going through. But, please know that my heart aches for your heart. I have grown to love you all.

    Please know that you have an amazing support system here through your blog and that you and your family have touched the lives of so many.

    I am humbled by your faith.

    Dear God, give me that kind of faith. In Jesus’ name, Amen

  7. It’s been a couple years since I had the privilege to meet both you and Nick. What happened that night in will never escape my memory. Since then I have kept up with your journey via Nick’s website and emails from friends and now on your blog. I am always eager to read about how Nick is doing. I have also always remained encouraged by what God led me to say to Nick that night while he sat up in his hospital bed with his laptop wondering who in the world I was! You may not remember yourself, but I do. I know without a doubt that God brought me to him and to you. I did not know either of you nor did I know your circumstances. I just “happen” to be in the chapel that night praying for a printed out list of names. Tammy, God said…let me repeat…GOD SAID that Nick IS healed. It IS His will that Nick will be made whole and will continue to glorify and magnify Him. What I said to you was “It is in your praise.” I remember that God impressed that upon me to say. I said it a couple times to you. I didn’t understand what that really meant at the time, but I do now. Some time ago, I was in church with a dear friend who was recently diagnosed with a very aggressive form of breast cancer. At that point, she had already gone through a mastectomy and several rounds of chemo. She had lost her hair and she was very bloated and puffy-faced from the large amounts of steroids she was on. I had prayed with her on a few occasions at work (we are both oncology nurses). While we were standing together during praise and worship, I became overwhelmed with something that the Lord spoke to me. He said “How would you praise me if you knew that Lisa was healed?” Tears began to flood my eyes and rejoicing filled my heart!! I couldn’t contain myself!! I hugged her and kissed her. She probably thought I was crazy at first. But when I told her what my joy was about, we began to praise the Lord until the whole church was caught up in worship and praise. I say this to encourage you and to encourage you some more. Nick is hanging in there, God is blessing him and keeping him. And you’re right, He does have peace that passes all understanding because it is a gift of God. Just like the peace Daniel had in a pit of hungry lions and just like the Hebrew children had before walking into an inferno that was hot enough to burn them alive before they even got close to it. God is sustaining Nick FOR A REASON. Now, let me say this. I realize that you may not agree with some of what I have given you, and I realize there are “denomination issues” that keep the children of God in a tiz with each other, but that’s not what I’m about. For a long time I haven’t sent any comments to you out of fear of offending you or your family. I would never intentionally do that. But I feel stongly that I should relay these things to you and encourage you and remind you. I care so much for Nick and for you. I am waiting to read the blog that says “We continue to watch Nick improve and increase, praise God!” That day is coming….Jesus asks us to “just believe”. And we can do that. But our belief and our faith is manifested in our praise to Him for what we know He will bring to pass. Lay your heavy heart down at the alter and trust God with it. But don’t pick it back up as you leave. I can only imagine how hard that is, but you must do it. Trust God for His Word. He is faithful and more than able and WILLING to act on your behalf and on Nick’s behalf. I continue to lift you all in my prayers… thanking him for the miracle that is to come. I pray for His comfort and peace to overwhelm you and Nick and your entire family during a time when things don’t look or sound good. But just as you said, God is on the throne and He controls everything to the most minute detail in our lives. What’s amazing is that such a great God who controls the universe cares that much for us. Be encouraged today, Tammy. God bless you and keep you…and I mean that. I know you are prepared to stand forever for Nick. I’m a Mom too and I know there would be no question when it comes to my precious son. So while your standing and waiting patiently, go ahead and praise Him for who He is. Your Savior, Your Healer, Your Provider, Your Comforter, Your Friend, Your Father in Heaven, Your Creator, (shall I keep on praisin’?) Oh, and by the way, my friend Lisa is doing wonderfully. She continues to get better and more beautiful.

  8. I had the great privilege of meeting you, Nick and Tim at his MRI in Kenwood. The moment you walked into the door, I felt God’s presence. Your family glows with His love and I immediately felt blessed. My heart sunk as I saw the images pop up on our screen. But how amazing that they’re growing on the outer side of his brain! Unbelievable. It’s almost like a shield “protecting” his brain in a way. To see Nick walk as he does, smile, speak… there’s no way he could be this functional if that was on the inside of the skull. He is an amazing young man and I’m so glad to have met him. As I told Tim, Ependymoma is my greatest enemy. I have struggled to make sense of it, but it is the strength I see in you and other families that keeps my heart from turning cold. I shared your website with another family who has the “E” word in their life because I noticed that Nick shares the same timeline as their daughter, who is just as precious and full of Life. Life with a capital “L”. Her name is Jessica Elam and her webpage is http://www.caringbridge.org/visit/jessicaelam. These two teenagers shine with God’s love and promise and are beacons to others. They are God’s walking Word and it’s an awesome sight. This is lengthier than I had intended; just know that your family touched me in just the few moments we spoke and you are all in my prayers and thoughts. You have tattooed my heart and will forever be there. God bless you all, for He has used you to bless so many others.

    Children’s Hospital
    MRI Kenwood (registration)

  9. First of all, I want to say that I love you, my friend. The tears are pouring, so I cannot imagine yours. Your faith in our God is one we all should emulate. And Nick’s zest for life should be the way all of us live ours!

    Praying and praying –

  10. Tammy,

    I am crying with you….rejoicing with you at the miracles you already have seen…and begging God with you for healing – and His continued perfect peace until then.

    Will write Nick a letter tonight. Hugs to all of you,


  11. My heart and prayers are with your family. I love you guys!

    The effective prayer of a righteous man can accomplish much.
    James 5:16

  12. Nick’s life continues to be proof of God’s love. So does your continued strength. We are here whenever you need us.

    Love, The Strothers

  13. My lap top was on the fritz, but I have visited here a few times and have prayed for Nick. I am sad to read this today, but I know God is greater then this illness. I will try to get a card out to Nick, and I’m on Facebook my name is Lesley Wotton.

    Take care!! :0)

  14. Tammy, No words cold even say the way my heart aches for you and the family at this time so all I will say is I will Pray, Pray , Pray.
    God Bless You,