Terrible decisions

We have had to make a whole lot of terrible decisions during Nathan’s battle. Decisions that no parent should have to make about the life of their child.

It seems they just get harder and harder.

Nathan is currently dependent on platelet transfusions. He needs a transfusion every 5 days.

So – today the doctor (not his regular doctor) asked me if we wanted to transfuse. The alternative is for Nathan to hemorrage to death. Nathan was sitting there in the room so we had to speak obliquely about things but I basically said that it would depend on what else Nathan was likely to die from. However, we couldn’t really have that conversation and I just said that I thought we wouldn’t want him to bleed to death.

So – I guess it is coming to the time when we need to decide how Nathan will die. Bleed to death? Infection? (forgo a preventative antibiotic he has been getting) I think the usual thing to happen is a tumor takes over the abdomen or liver and and shuts down the vital organs. We don’t even know if he has any such tumors. We do know he can’t go on hospice and get the services they provide while he is still getting transfusions but I am thinking if we stop transfusing we won’t have much time to need their services anyway. I have no idea if bleeding to death is a bad way to die. Doesn’t sound good to me.

Anyway – it is all just awful. It is worse right now because we have very little information from the doctors and we hope to remedy that soon.

15 responses to “Terrible decisions

  1. There is really nothing to say. You and Luke will give Nathan all the love and compassion and mercy you can, and whatever happens you all will be loved throughout. Lisa

  2. That utterly stinks in so many ways, especially that the doctor asked you in that way when you really did not have a chance to talk things through. I wish I could give you a hug right about now.

  3. I realize the health care profossionals are focussed on trying to keep kids alive, but I’m shocked there isn’t more support for you in this stage.

  4. I came to your page from your comment on Especially Heather’s web page. I was drawn because of your location- I grew up in the Springs so I was curious who you were. But I was drawn because I too am the mother of a child who has a tumor that may take his life. I wanted you to know that I am in praying for you and your family. I am so sorry you are facing the decisions that you are. It is the most awful thing in the world to have to do- and a thing that no one can understand unless they walk through it themselves. My heart aches for you. I am praying that the remainder of the days that you have with your son are filled with joy, sweet memories, lots of love, and that your hearts are guarded from any darts of the Enemy. Praying in TenneseeKelly

  5. Susan,I hope that the Doctors become more communicative in these next few days and are able to give you more insight into the horrible decisions on the horizon.All I hope is that he has as many low-pain, awake days as is possible.You guys are always in my thoughts.xoxoxoxoKate

  6. My heart is breaking for you and Luke.Always in my prayers.

  7. Oh Susan. I don’t even know what to say, other than praying that God gives you, Luke and Nathan strength to get through what lies ahead.Can’t say much for the doctor’s timing, that’s for sure.And then putting two and two together and realizing from your email that you were dealing with exactly what my post was about…money should be flowing to these kids (and to research) like water.All we can do is give money, I wish there was something that I could do that was concrete and could make things easier.

  8. I came over from Heather’s blog and reading your story breaks my heart! No parent should have to make these kinds of decisions! I will be praying for your family. Have you ever heard of Jenny Scott or Heroes for Children? (If you visit my site, they are listed on my blog roll.)Jenny lost her daughter Allie to cancer 3 years ago and went on to co-found Heroes to help families dealing with childhood cancer.God Bless You!Connie

  9. đŸ˜¦ Always, always, much love.

  10. A mom you don’t know just saying how sorry I am. What a terrible situation. Maybe you can call the doctor when Nathan is not around? Pediatric hospice care in my area allows kids to get treatment while on hospice–it’s an awful choice to tell people they can only get hospice care if they forgo treatment for their child. I’m sorry that’s the case in your area. Know that you’re in my thoughts.Mary

  11. Saw your comment on Especially Heather. Praying for Nathan right now.Anna from Washington DC

  12. What an awful decision to make! I can’t believe the doctors aren’t being more supportive and offering solutions to make it easier on you. I am so sorry Susan. I will continue to keep you all in my thoughts and prayers! HUGE HUGS

  13. Nathan is in our family prayers Susan ..

  14. this post basically had me in tears. i can’t even begin to imagine. sorry somehow doesn’t even get close.

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