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My six-year-old son was diagnosed with a tumor in his spine two days ago.  He will be having surgery on Thursday, and will spend at least a week in the hospital afterwards.  Around that point in his r

We got the pathology report back!!! The tumor is a pilocytic astrocytoma, which is pretty benign. We have high hopes that this means he won’t need chemo or radiation therapy, but we won’t know until h

A specialist did an assessment this morning, and he had at least some motor response back in all but one muscle area of his left leg.  And it’s definitely getting stronger—from a twitch up to a little

Ugh, as if 2020 wasn't hard enough! What a horrible shock. I will be praying for RI and for your family. Hang in there and try to take care of yourself. If anyone offers to help, ask them to bring over some of those bottled smoothie drinks. When you are under stress and spending time at the hospital, it can be a challenge to eat well. When my child was in the hospital for 9 days (very different circumstances), I really appreciated a friend providing those to me. Any quick and easy, nutritious snacks would do. ❤️

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30 minutes ago, Jentrovert said:

I am hoping the surgery went well and thinking of your whole family. ❤

The surgery will be on Thursday.  After all his other tests came out clear, they decided to do it then instead of pulling everyone in on the weekend.  He and all the kids were excited to have him home for the weekend, and we squeezed two birthdays as well as a Halloween celebration in while we had the chance.  
 

Things are a whirlwind, making arrangements and packing and swinging between different levels of grief while not losing it in front of the kids and trying to enjoy these last few days for of family time all together. Also trying to get everyone’s simplified schoolwork completely open and go with instructions written out for the various people who will be helping them with school.  (My kids homeschool through a charter, which means we cannot just take off several weeks entirely whenever we want.)  Ri has to be quarantined after his covid swab Tuesday morning, and my foster girls have to go to visitation during that time, so they are going to respite with a friend of mine tonight.  My other kids are going to stay with cousins on Wednesday.

Edited by Condessa
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And in the meantime, Ri is doing better than he has in weeks. He’s on a medication to get the swelling in and around his spine down before the surgery, so he’s moving better and with less pain.  
 

He has had a couple of falls, though, which is concerning.  

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I am praying for all of you.  Sending you lots of hugs.  I am just very sorry this is happening.  It sounds like you guys had a good weekend (under the circumstances) and I'm glad he was able to be home with all of you.  Please continue to keep us update, especially once surgery is over Thursday (as you are able, of course).

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I wasn't sure if I should share, but my boys are best friends w/ W. (and his brother B.). When W. was 2 he was diagnosed with leukemia. (We met W. at 5.)

All the boys loved Star Wars so before W. would get treatment, my boys would tell him, "May the force be with you." (W. is 15 and in remission today.)

((((Condessa)))) They have so, so much for children. And the surgeons and nurses will be there for Ri 1000 percent. (My husband works for a children's hospital and says it's different b/c everyone cares so, so much.)

Sending you love and strength.

W.

 

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Praying for a safe, successful surgery for Ri today, and for peace and calm for your family. 

Lord Jesus Christ, Good Shepherd of the sheep, you gather the lambs in your arms and carry them in your bosom: We commend to your loving care this child, Ri. Relieve his pain, guard him from all danger, restore to him your gifts of gladness and strength, and raise him up to a life of service to you.  Hear us, we pray, for your dear Name's sake.  Amen.

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Ri’s surgery was this morning.  The doctor said he got over 90% of the tumor, and possibly all of it.  (Apparently there were some cells left behind that were unclear if they were tumor cells or not).  Ri was screaming and screaming afterwards, even on three different serious pain meds.  He wanted both of us, but the recovery room would not allow it.  It wasn’t until a few hours after he woke up and they had transferred him to the PICU that they made an exception to let us both be with him together for 20 minutes, when he finally stopped screaming.  He can’t move his left leg, and had no sensation in it, but now the feeling is coming back, creeping down from the top.  He can now feel down to a couple of inches below the knee, so hopefully that will continue and motion will follow.  His right leg was numb at first, too, but he could always move it and the feeling came back to it quickly.

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I'm so glad to hear the good news, but thinking about your little boy screaming in pain for his mommy and daddy made me cry. I can't even imagine the stress and trauma you guys are going through with this. Sending hugs and positive thoughts for the best possible outcome. 

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3 hours ago, Condessa said:

Ri’s surgery was this morning.  The doctor said he got over 90% of the tumor, and possibly all of it.  (Apparently there were some cells left behind that were unclear if they were tumor cells or not).  Ri was screaming and screaming afterwards, even on three different serious pain meds.  He wanted both of us, but the recovery room would not allow it.  It wasn’t until a few hours after he woke up and they had transferred him to the PICU that they made an exception to let us both be with him together for 20 minutes, when he finally stopped screaming.  He can’t move his left leg, and had no sensation in it, but now the feeling is coming back, creeping down from the top.  He can now feel down to a couple of inches below the knee, so hopefully that will continue and motion will follow.  His right leg was numb at first, too, but he could always move it and the feeling came back to it quickly.

i am so sorry you are going through this.   i hope they are able to make him comfortable soon and that you get good results from the testing.  

Praying for you and Ri. 

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