June 3rd 2013

Posted by on Jun 4, 2013 in Latest Updates | 3 Comments

June 3, 2013 Today has been an extremely hard day for me… To see Treyden still just sleep all day and cry when he is awake is horrible however I think that it isn’t as bad as it was yesterday the fact is that this is not our baby. There have been many many doctors that have come into his room today which doesn’t make things any easier on us. They have told us that the reason why Treyden is acting this way is because he is having side effects from the chemotherapy. They are not sure if it is the chemo from the spine or if it is from the chemo that is running through his body. The side effect is that it is affecting his nerves, and in the paper work said that it mostly pertains to the jaw. Which makes sense because he is just pulling at his gums and constantly biting down. He has had a few white spots but they come and go rather quickly. He is being put on a medicine that helps with the nerve issues unfortunately it is a medicine that can only be increased slowly and we will not know if it is working for a couple days yet. His butt seems to be doing great again I did not see any sores there tonight we are using an ointment that is called calmoseptine it works a lot like triple paste. I am thankful for that. We also started doing oral care for Treyden’s mouth we take foam sponges that are dipped in nystatin and gently rub the gums and inside of the mouth three times a day. He does well when I do it but when the nurses do it he throws up. In my opinion they are more aggressive with it than I am and they end up gagging him. So I try to be the only one to do it. Trav usually holds his chin down and I do the rubbing part. We spoke with nutrition to make sure that it is ok that we are giving him just pediasure through the NG tube and they said that was perfectly fine he is getting more nutrients in some aspects than the formula he was getting. She said either one we can do formula or pediasure. The hospital has his formula in now as well. The quality of life nurse came by today (the one that I really like) and talked with us about things. She really explains things good but I’m at a point where I am scared to death and I hate if the doctors do not take the time to explain it the way she does, and I do not even know that until she comes in and talks with us and tells us things that the other people didn’t. Today Treydens nurse hooked him up to a heart rate monitor and continued to watch the screen very closely. I asked if everything was ok and she told me that it was that it was saying he was having abnormal heartbeats but he was crying and she said that the leads could be doing it as well. But she said that he was fine and then left the room. Once outside the room I heard her say to a colleague that his heart rate should be higher. Anyone that knows me knows that I freak out and sometimes I freak out a little too much but this really made me mad and I just sat on Treydens bed watching the monitor trying to see what they were seeing (which obviously I don’t know what I am looking at so it was pointless) but it made me feel a little better. Travis told me to let it be and the fact that he had morphine slows down his heart rate which we knew, so I went downstairs to get some lunch and came back up so trav could go down. While Travis was gone an EKG tech came in the room and told me that they were going to get an EKG. This was the first that I had heard this was happening and I knew that dealt with the heart so again I felt like 1000 needles where being poked into my skin and it had to be something bad going on. I asked the tech how everything looked and he said well let’s just put it this way I didn’t see anything that jumped out to me.. But the doctors are the ones that will look at it and give you results. (Which that is what we are always told but don’t seem to get results like these unless we ask) So I had one of the nurse’s call back the quality of life nurse so hopefully she could put me more at ease. While talking to us she told us that babies never have a regular heartbeat like us adults, but she was unsure what they were looking at and currently what was showing on the screen was a great pattern and heart rate. I told her what I had heard the nurse say too and just how scared I am with everything, she stepped out of the room to go try and find out more of what was going on. While she was out Treydens nurse confronted me about what was going on and we were going back in forth it seemed like of what it felt like to me why I felt the way I did because she explained things to me. Eventually it came down to me getting upset and asking her if she could see things from my point of view being in the hospital for the reasons that we are and hearing things outside of our room that are different than what’s being inside the room. It wasn’t all said in that exact way but that’s the shortened version of it. She apologized and said that she did not mean to make us feel uneasy, but that’s exactly how we felt. Not too much later the np came in and told us that she was sorry no one came in to tell us about a procedure that was taking place. And she said that it did look a little abnormal but for him it was normal type thing being an infant and that the monitor no longer needed to be on. Later she came back in and told me that the cardiologist wanted Treyden to wear a halter monitor which monitors him for 24 hours just to get a better idea of it. I didn’t question too much at the time because Dr. Grueber was in here talking to me and I just couldn’t think at the time, but later I thought to myself well I thought everything was ok??? Today June 4th she said that his breathing and rhythms were not matching up so this is a good thing to be cautious on even if it ends up being nothing which we agree it’s just another thing that I am on pins and needles about. Dr. Gruebers visit was the hardest one. She explained that she didn’t like seeing him the way he was because it is obvious to her that this isn’t Treyden. She explained to me she is scared to give more and chemo and scared not to give the chemo, and asked me how I felt. (Travis was gone at this point) I broke down instantly to her and just balled… I explained that I am scared of everything and felt the same way she did, I told her though that I cannot say stop because I know that he will die then… As I am telling her my innermost fears and thoughts I see the tears rolling down her face too…. I told her a part of me feels selfish that maybe he doesn’t want to continue to get treatment but I just can’t back down because I think that we have come this far for a reason…. And his organs from what we know are doing well. She agreed and said that he looks fantastic, that they do not see babies that have been through what he has and that look this good on the outside and on the inside…. She continued with she understands why Travis and I cannot say stop but there comes a time when the doctors have to say stop… and she said that she is not a doctor that says stop very often… she has said it in the past and told me that if things do not improve in a week or two she may have to tell us enough is enough because Treyden would be suffering and we would not be benefiting him. But she said we are not there yet, if Treydens current condition improves which we have hopes for she would like to see how he responds to the other suggestion of chemo in the spine. She also informed me that the transplant team and radiation team gave us the go ahead to try and use the radiation along with chemotherapy to clear these last cells. Again she said this was something she wanted to further discuss when Travis and I both were here because all three of us have to agree what is best for Treyden and if Travis and I are willing to deal with the long term side effects. She told me nothing is a guarantee with radiation there is nothing saying this will work but she has seen it work in the past along with no one can say what the side effects are if any… but we always need to be prepared. Travis and I hold on to any glimpse of hope that we can, because we want to believe that he will be cured given the chance because he is our miracle baby. Treyden gave me more hope and I think Travis more hope with having his eyes open more and holding himself up when we were holding him yesterday. I did catch him a few times playing with his hands like he usually does. I hope that we get to see that great smile that he has very soon. The doctors tell us clinically he looks like he is improving but all of his cultures have shown that he is not clearing the infection yet. We are starting vanco locks in hope that will help. If he does not clear it the line will be removed, with infections they like to stick to the plastic (the line) and that makes it hard to clear. This was a long post but there was so much information that was given yesterday that I just needed a day to process some things, it has been very hard on us to hear the things we did yesterday, but like I said we can’t stop we are still holding to whatever we can to take us to the next step. Thank you all so much for your love and support you have no idea what it means to us. Love Cassie Travis and Treyden

3 Comments

  1. Debbie Hotchkiss
    June 6, 2013

    Cassie and Travis,I watch for your post almost everyday. I try to keep people informed at the bar, that don’t have internet. Everybody here is praying for all of you, as are Larry and I. We love you all very much, hang in there, you guys are the strongest people I have ever known. Love ya and can’t wait for you to come home with Treydan.

  2. Heidi Mellenberger
    June 4, 2013

    Travis and Cassie you are the most amazing parents I have ever known. The two of you have never given up Hope and continue to do everything in your power to fight for your son’s life. Your family has touched so many lives and all of us continue to pray for Treyden. He has come so far in his fight against cancer and by God’s Grace he will continue to improve. Hold on to your Faith and to one another. Reach out when you need family and friends by your side. No one is giving up on our Little Miracle Baby!!!! I love you and miss you so much!

  3. Kathy Treu
    June 4, 2013

    My heart just aches for you and Travis. I could feel your pain and frustration. Treyden is so blessed to have you both for parents. Your have endured the pain each and every day for so many months. You have so many people praying for your little baby that I refuse to believe that God will not hear our prayers. We will continue to keep you in our thoughts and prayers. God Bless.

    Kathy Treu

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