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Ok, so the current plan is they have to do more tests. not to find out what, but to find out where all it is. They have to do a full body x-ray and bone density scan, a full body CT with contrast (again) and a brain MRI, as well as more bloodwork. They may need a skin biopsy but I don't know. This is supposedly being done Monday. This is all to find out how widespread, what it affects, etc... so they can have a treatment plan and can start chemo. I'm thinking we might have gotten official word if suddenly all this is ordered tonight and it will be happening Monday, before the final results. They are all tests that in my research are all supposed to be done before treatment.
But right now I am worried about him. I noticed the mass in his neck is larger. I can now see it farther down and farther out. I am terrified it will close his airway. Terrified doesn't even describe it. I am crying again. We had such a good start to our day too! I want his normal doctor to be back her and I want these tests done and I want him on treatment ASAP, now, whatever. I am so scared its going to grow and put too much pressure on his airway and they won't be able to ventilate him. Oh, this is so hard to manage. I am falling to peices. And he's HURTING right now. And because of this I am scared to let them give him something so they gave him some tylenol and if he's still hurting in a while I'll talk to them about the other stuff they have given him and if it could risk his airway. I keep wondering Why Joey. Why does he have to be sick and have this horrible awful thing in his body? I never thought I'd see the day I would pray for the chemicals to start flowing through his body but I do. I pray constantly that they can start putting this poison in him.
We talked about chemo today. Yea, that was tough to talk about. Once he starts he may need blood transfusions, to keep healthy cells in his body. We are setting up a direct donor thing for him so that we can donate directly to him if we're a match. I'm a universal giver, as is my dad, so I will be donating to him, probably Monday or the following Monday. And the whole family has said anything he needs. I pray this hasn't gotten his bone marrow, which it could have. God, I pray it hasn't. I don't even know how they would test that but I do know it can get his bone marrow, it can get everything, bones, organs, skin, his brain, anything.
I feel so lonely, I've been here all day and my mom finally came and I am stressed by everything. And since she brought my sister with her I am having to tell her to shut up because I don't want to hear all the crap she "researched" because she won't shut up when she starts scaring me. I'm at the point now that I know TOO much. Like the younger a patient is the worse the prognosis is, the more systems involved the worse it is. The highest mortality rate is in children under 2. I'm trying to stay strong, but I'm again falling apart.
Im sorry Traci.....CHOC Is a great Hospital though and Im sure there doing all they can as fast as possiable! I wish I could help but I continue to keep you guys in my thoughts and I know In the end everything will turn out ok.
I am so sorry you are going through all of this. I wish Monday would come too. It has got to be so hard for you to keep it together. I pray that Monday will show good results. (((HUGS))) to you & Joey.
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A Huge Shout Out to Naz1996 for my awesome siggie!
I know it's scary...but hang in there. Don't give up on being relentless with the doctors and nurses...stay on top of things. It sounds like you're doing a great job, you're a great mommy!
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