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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.
Oh sweetie - this just makes me cry for you. I know this has to be terrifying - I can only begin to even try to imagine & yet I know I still can't. I think feeling like you are falling to pieces is NORMAL. I think feeling alone is normal. It is part of feeling helpless & desperate & that is how any momma would feel & does feel when their child is facing a scary illness or disease. Try try try to take a step back & breathe. I know you are a person of faith so I will tell you what seems to help me at worst moments & that is "if God has brought me to it he will bring me through it". I am praying for you both for strength & peace. Please know that you aren't alone, no matter how lonely it feels. There are many thoughts & prayers that are surrounding you & your little boy right now & all through this time. I am hoping that right now you are sleeping (although I am not sure how peacefully) and that you will find tomorrow brings you more confidence & more answers. We are all praying for you & Joey. Please keep us updated!
__________________ B - Crazy momma to my two boys
We've begun to raise daughters more like sons... but few have the courage to raise our sons more like our daughters. ~Gloria Steinem If a man has been his mother's undisputed darling he retains throughout life the triumphant feeling, the confidence in success, which not seldom brings actual success along with it. ~Sigmund Freud
My mom is a neverending song in my heart of comfort, happiness, and being. I may sometimes forget the words but I always remember the tune. ~Graycie Harmon Don't wait to make your son a great man - make him a great boy. ~Author Unknown
You don't raise heroes, you raise sons. And if you treat them like sons, they'll turn out to be heroes, even if it's just in your own eyes. ~Walter M. Schirra, Sr. A man loves his sweetheart the most, his wife the best, but his mother the longest. ~Irish Proverb
Mother's love is peace. It need not be acquired, it need not be deserved. ~Erich Fromm Children need love, especially when they do not deserve it. - Harold Hulbert
Mother is the name for God in the lips and hearts of little children. ~William Makepeace Thackeray God could not be everywhere, so he created mothers. ~Jewish Proverb
The best conversations with mothers always take place in silence, when only the heart speaks. ~Carrie Latet
I don't have words to make you feel better becaues I can't pretend to understand how you are feeling but I will keep you and little Joey in my prayers. Thank you for taking the time to update us. Hopefully the treatment can start ASAP and I pray it hasn't spread very far.
I agree with Beckie. Even though I know I can't even begin to understand, I think what you are feeling is completely normal. I really hope you can get some more answers soon and are able to start treatment.
Thanks to Jaidynsmum for my siggy!
Proud former foster parent to a teen. Waiting on our next call. Proud Aunt to 22.
Proud mommy to 7 angels. Survivor of 4 failed adoptions (5 kids)
I can't even imagine what you are feeling or going through right now. I can only pray that God will wrap His arms around you and that you would feel His presence and His peace. I'm praying for Joey's healing and for guidance for the doctors, that they would take every step necessary for his healing and nothing unnecessary. ((((huge hugs))))))
Married 8/11/90 ~ Terry Bechor m/c'd 11/26/03, Thomas A. III m/c'd 7/15/04,
Sarah E. born 6/24/05, Tabitha Zipporah m/c'd 4/?/06, Theodore David m/c'd 8/27/06,
Taylor Lynn m/c'd 2/07/07, Benjamin E. born 3/25/08, Catherine A. born 6/03/09
I can't even imagine what you are feeling or going through right now. I can only pray that God will wrap His arms around you and that you would feel His presence and His peace. I'm praying for Joey's healing and for guidance for the doctors, that they would take every step necessary for his healing and nothing unnecessary. ((((huge hugs))))))[/b]
You know today I feel this so much. I feel peace and strength today and I am grateful for it because I know this coming week will be rough, but with God's Grace we will get through it.