June 5th 2013

Posted by on Jun 6, 2013 in Latest Updates | 20 Comments

June 5, 2013 This is a very hard post for me to write so I am going to do my best. This has been by far the scariest day of our journey so far. Early this evening we noticed Treyden to start to act different with his neck. He didn’t want to turn it side to side and kept wanting to go backwards. He ended up having a big throw up and then shortly after that is when our world came crumbling down. I placed him on the bed for him to try to sit up because something just didn’t seem right, he couldn’t do that and I laid him down immediately. Usually he hates being laid down but this time he didn’t cry. I noticed that his arm was starting to twitch his right arm to be exact, I was so scared but kept my composure. His head was turned to the right and he eyes were looking that way as well I told Travis I was scared he was having a seizure. Immediately we opened the door and called for help as well as had our call light on. Travis was trying talking to him to see if he would respond but his eyes were locked. Our nurse and a handful of other team members came running in and started to work on him we both tried holding it together but seeing him like that was beyond scary.It didn’t take long for them to confirm that it indeed was a seizure. Quickly a bunch more people came in more more equipment It seemed to go on forever and the time frame that it actually lasted I cannot even say… he had multiple seizures and they kept giving seizure meds but it wasn’t doing it. All of a sudden he stopped breathing travis and I were trying to stay out of everyones way so that they could help him but when we heard that we became unglued… We were quickly rushed out of the room by a nurse and I just kept saying no no no no no, as we saw them starting chest compressions and intubating him. I heard them call the code I just wanted to get back in there as I am sure Travis did to but we were not making anything easier in the room. Travis held me close and told me that he was going to be ok, as we cried out in the hall what felt like forever, I thought that was it. I was shaking, crying and breathing heavy I just kept repeating not my baby, no no no god please no. I cannot even begin to describe the emptiness and sick feeling that we felt at that moment. A nurse came out to tell us that they got his pulse back very quickly and he was breathing on his own, that the reason his heart stopped was because of the medicines used to stop the seizures make your brain slow down and this just made things stop for Treyden… There were many other nurses that stood by our sides in the hall way trying to make sure that we were ok. Dr Grueber was there very quickly as well and tried to keep us as informed as she could. As soon as they had his seizures under control we were off to CT. They had travis and I stand in a separate area away from any monitors, Travis and I didn’t say much other than just held on to one another… We are in ICU, they did a CT scan on Treyden’s head and it showed that he could possibly have a small brain bleed. This could be caused by a number of things due to his disease. Because he has disease in his spine his vessels there are not as strong as what a normal babies would be, this could be because his platelets have been low for so long and that he has no counts, it could be because high blood pressure, it could be so many variables that it’s just to hard to say what it could be from if that is what it is. Same reason for the seizure happening. Treyden also had an eeg done tonight too so we are waiting results. Once up to ICU we were watching monitors from outside the room we were not allowed to go inside yet. Travis was telling me that he could see the monitors and Treydens heart rate was 212… extremely high. Again we start freaking out, an education nurse then came up to us and asked us how she could help us understand what was going on. But we couldn’t do anything but stare inside this room. We were finally able to come in and the tears just began rolling again. Both of us were crying, crying because we just witnessed the scariest thing so far and crying because we are so happy he is still here. They gave him another seizure med when we were up here because he was acting as if he could possibly be having another one. They told us that he would sedated pretty well for the next day at least and mostly likely it would be a few days. He has a breathing tube in and his hooked up to the monitors. The ICU is one on one nursing so he is being monitored very closely. The night doctor came in and talked with us she was the same doctor that we had the very first time we ever came here. She said that he is really strong he is already showing signs that some people do not show for days especially being highly sedated. He has been moving around quite a bit trying to get the tube out. She also told us that this could have happened because his sodium was low, and that it could have dropped fast… because with the morning labs his level was fine. He is going to be getting lab draws every two hours. As of right now all chemo procedures are put on hold, Treydens body needs a break. Dr. Grueber said that this is a set back but this doesn’t mean that it is the end… and to not give up hope. I am siting next to his crib right now watching him and writing this his heart level is still higher but has gone down a lot. They are starting to wean him off the breathing tube that’s set at 25 right now they want to get it down to 21 which I guess is minimal usage of oxygen, but they cant go to fast because of how sedated he is. His blood pressures are much lower right now but that is also something that happens with sedation. I just want to hold him and snuggle him and over load him with kisses, I rub his hand and I sing him this song that I made up “baby love its your baby love, I need it oh how I need you, tell me what did I do wrong, take my love and be strong , no one makes me feel the way your baby love does your baby love does…. Ect “ he usually likes it but it just seems to make his heart rate increase it seems like so I am trying my hardest to just be at his side without touching him or singing to him. The nurses are very good at explaining anything that I have questions about which makes me feel good. The quality of life nurse called to to make sure we knew that we could call her at any point and time… We are so grateful for the medical staff today, for having the knowledge to help Treyden and the fact that he is still here with us right now. We are not even close to be out of the woods, everything from here on out is still critical. To add to the mess Treydens white blood count was 200 today and his immunity level was 100. Treyden hasn’t had immunity since decemeber and that was only for a short period of time… This scares Travis and I because we are scared that his bone marrow is starting to recover and will be immune to the chemotherapy we are using. Dr Grueber on the other hand told us she was excited to see that he made that many immune system cells. We will see what happens on the days to follow. Right now we are worried about what lies ahead for the next few hours to come.We asked if we should call family to come but she said to wait to see how he does through the night and tomorrow. I am told that it is rare to have a seizure when you are this sedated but it can be possible … I do not for see me sleeping much tonight so I may have many updates on here throughout the night… Travis is trying to get some rest in the parent room. God if you are listening to the thousands of prayers being sent, now is your time to prove yourself to us… Give Treyden the strength to keep moving forward. I am begging you… Please please please pray for Treyden now more than ever, Love Cassie Travis and Treyden

20 Comments

  1. Becky Urness
    August 1, 2013

    I’am so sorry for the loss of your little one. He was a beautiful little child. The lord was ready for another little angel. They say there is a beautiful stream of water in heaven. And that is where the older people sit and rock the little ones.I just bet my mother is holding and taking care of the little ones in heaven too.

  2. Melissa Zblewski
    June 15, 2013

    I am so sorry for your loss! I cry every time I think about it. I can’t imagine.

  3. Denice
    June 14, 2013

    So sorry for your loss of your sweet little one. I pray for you and your family in your grief. Praying that you all have the strength to make it through the difficult weeks and years ahead. Trust in God….. Treyden is in a much better place then we are. RIP sweet baby Treyden.

  4. Marsha Arendt Villatoro
    June 14, 2013

    My family will be praying for your family and your son. I know it’s hard to deal with something like this but he’s strong. He’s proven that to you that he is going to fight. Love him be strong. Keep us posted

  5. Kellyn
    June 13, 2013

    I have been watching and reading many things tonight on your sweet little baby boy. My heart breaks, and I tear up over everything. You are such a strong, and wonderful mother. I’m not sure I could ever be as strong as you. My daughter has hearing loss and I selfishly was upset over that. She was born 6 weeks premature, and spent 25 days in the nicu. That was pure hell. That is NOTHING compared to your struggle and hearing your story, I feel guilty that I ever felt angry over my situation. You were so lucky to have him, and he lucky to have you. I am so very sorry for your loss. I hope that Treyden helps heal the pain you are feeling right now. Again, I am so very sorry. My thoughts and prayers are with your family.

  6. Kristin
    June 13, 2013

    I don’t know you, but this helped me when my friend passed away two years ago.

    “I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength, and I stand and watch until at last she hangs like a speck of white cloud, just where the sea and sky come down to mingle with each other.

    Then someone at my side says, ‘There she goes!’

    Gone where? Gone from my sight … that is all.

    She is just as large in mast and hull and spar as she was when she left my side, and just as able to bear her load of living freight to the place of destination. Her diminished size is in me, not in her.

    And just at the moment when someone at my side says, ‘There she goes!’ there are other eyes watching her coming, and their voices ready to take up the glad shout:

    ‘Here she comes!’”

    Henry Van Dyke
    (1852-1933)

  7. Claire
    June 13, 2013

    For all you who are reading this site, Treyden lost his battle with cancer and passed away today 6/13/13. May his blessed soul rest in peace and may his family find comfort and peace in knowing he now rests with God.

  8. carol
    June 13, 2013

    Dearest family of Treyden,
    I would like you to know that we all here in FL also send our love and prayers for you all. The road is long the road is even rou7gh at times I am sure, but the love you have for that presious baby boy is out pouring and the love of a mother is something no one will ever understand. I resently lost my son, he was 22 yrs old tho, but the loss has taken a huge chunk out of my heart being mother. I know how you are feeling both you, and I pray that GOD will give Treyden a healing hand. I pray that you and your family will stay strong. That little man is the cutiest little guy and he is GODS gift to you. Take that gift and give him all the love you have and then scrape up more deep down in your heart, theres always more love in us. Stay stong, Gods at work.
    God love each and everyone of you and Treyden, a big hug to that beautiful smile.
    My daughter lives in WI and has been folloing you the whole way, she is a friend of your friend, and Again I pray for love and guidance for you all!

  9. Cecilia
    June 13, 2013

    So sorry for your loss. Rest in peace baby Trey!

  10. amy
    June 12, 2013

    I am a friend of one of your friends. I have been reading your posts. I am sorry for the difficulty that you are facing in possibly losing your son to cancer. My prayers for you are that you know that the Bible says “…that to be absent in the body is to be present with the Lord.” I know that to mean that your son will eternally be with the Savior if he loses his fight with cancer. I also pray for your marriage and that this trial strengthen you relationship rather than pull it apart. I pray that God protects your relationship. I am not sure of all the answers, but I do know that Treyden’s life with you was short, but that he has an eternal home waiting for him where pain and cancer does not exist…Praise the Lord!

  11. Melinda
    June 11, 2013

    I pray for strength and hope as you and Treyden fight this disease and its’ horrible complications. It sounds as though the medical team is doing their very finest for you and your precious boy. You can count me in as one more to pray for you all. May God bless you and comfort you and give you renewed strength!

  12. Marge Kremer
    June 8, 2013

    Marge Haupt-Kremer

    Prayer For Treyden! Please Pray This Prayer!

    O Blessed Mother, We come Before You & Ask That You Intercede to Your Son for a Miraculous Healing of This Precious Little Boy Treyden. May Our most Loving Lord Jesus, Heal & Protect Treyden From Any Harm or Pain. Strengthen His Parents, Cassie & Travis, That They May be Filled With Hope in You. Be With Them Dear Lord, in Their Time of Need. You Can Perform Miracles, & We Ask that You Heal Treyden’s Precious Little Body, So That We may All Rejoice in Your Grace & Blessings Today, & Everyday. We ask This Prayer in Your Name, For You Are Our Risen Lord, Amen.

  13. nick
    June 8, 2013

    hello,
    a friend on facebook made a comment about your son. so i googled it and found this. i know i am a total stranger but
    i felt the need to say something. i wish the best for your family. your son sounds very strong and i hope he pulls through this.
    i really wish i could do something more then a prayer.

  14. Jessica Thompson
    June 7, 2013

    I can not stop crying. My heart just aches for Treyden. PLEASE GOD heal this precious precious baby boy, make him strong, let him beat this. I will continue to think and pray for beautiful Treyden. God Bless you.

  15. Marge Kremer
    June 7, 2013

    Cassie & Travis…My heart goes out to you. I am praying & crying right with you. May Our Lord Bless little Treyden and his Family.

  16. maxine grant
    June 6, 2013

    Cassie and Travis soo sorry u had to go through this. Glad you at least have a hospital family to help u through this all your family is there in spirit. And the greatest person is by all of your sides god. Will be praying extra hard for Baby Trey today. love him soo very much the dr said he is very strong he must be. and the immune system numbers are comming sounds like the dr thinks that is good. Just stay strong and keep the faith we love you all soo much. God Bless will continue to watch for post today.

  17. maxine grant
    June 6, 2013

    Cassie and Travis our heart goes out to you .

  18. LeAnn Lang
    June 6, 2013

    Cassie and Travis-
    I wish I could wave a magic wand and make this all go away and be better for all of you. The tears are flowing this morning as I am reading this post. I cannot imagine the fear you were going through. PLEASE PLEASE GOD, give this family a break and show that miracle we are all waiting for. Give them all the strength to get through this and heal Treyden so he can come home and live a normal life.
    Hugs to you both Travis and Cassie……and Treyden, stay strong buddy!!!!!

  19. Luciann
    June 6, 2013

    Wokeup and you all on my heart saw the post and tears started to flow. Sending prayers from Texas. Lord make yourself known to this family. Show your power show your grace above all show yourself merciful and show your LOVE. Be the comforter that you are and send your angels to surround this precious family at this time. I have never met them but I know a Mothers love for her Trey. Give them strength to keep going and guide them through this day. I ask these things in the name of your Son Jesus.Amen.

  20. Kathy Treu
    June 6, 2013

    Just reading your post…it’s 1:40 AM…and I couldn’t sleep. With that said I am praying the rosary for all of you. God please watch over Treyden and give his parents the strength they need. Amen

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