Recent Events
For those of who who don't know, my son Shia has been diagnosed with a benign (non cancerous) tumor on his skull. We have been in and out of the hospital for a couple weeks now getting tests done, and trying to figure out exactly what is wrong.
Josh and I both noticed a bump on teh back of Shia's skull on Oct 24th or around there. On that following Tuesday (Oct 26th? I am putting dates so I can remember all of this) I took him to the dr. and they did an X-ray. The Next day I waited for a reply, and got it on Thursday morning that his X-Ray came back abnormal and they wanted to do a CT of his skull, so Thursday we went in for a CT, and that came back abnormally, so they wanted to do a bone scan, but we waited for that until Monday (Nov 1st). On Monday they had to give hom a waking sedatiob, and injection of dye, then he had his bone scan, and we had some fun laughing when Shia woke up because he was so silly, but that afternoon was rough because he didn't come down from the meds very well. However, when it wore off, he had a great night, we all slept well, and I went into work on Tuesday with the kids.
I got yet another abnormal result from the bone scan, although they did not see the tumor anywhere else on his bones (yes!), but then they reffered us to a neurologist at the Toledo Children's hospital. One that deals with blood disorders and cancer. By this point I am trying not to let my mind freak out with the possibility that my two year old son has a cancerous brain tumor, or something like that. JOsh and I both had and emotional breakdown, and talked about how everything was going. Crying helped, and we could definitely tell that God has been watching over us this whole time. He has comforted us and brought us closer as a family throughout all of this.
Anyway, we had the neurology appointment, and Dr. Strunk told us that Shia had a non cancerous tumor on his skull (i forget the name, i am still waiting for everything in writing from the dr's), but would need some further testing: another full body ct scan, an MRI, a biopsy from a neurosurgeon, and a bone marrow extraction (done while he is under aesthesia for the biopsy). And then after all that, Chemo for 6-9 months to get rid of the tumor. So, yesterday was the CT scan and MRI, and the tests he did great with, but not the prep. Shia is getting smart to the fact that he gets poked, and his made to drink nasty meds and all of that whenever we have to go to the hospital, and it's hard because otherwise he is healthy! He doesn't complain about his head at all, and runs around and says no just like any other two-year-old boy. That makes it easier when we are at home, but extremely hard when he is getting hurt over and over for no apparent reason to him. They put a feeding tube down his nose into his stomach for the CT scan contrast fluid, and they finally got it all down, but we will never do that again if we can help it. He just kept on gagging and throwing the stuff up because he was so upset, and we just had them take it out because there was no way he was going to keep that in for the remainder of the day to try and get the sedation drugs down.
OKay, so now the CT and MRI are done, and we have the neurosurgeon appointment on monday, where I think they are going to tell us when Shia will have his biopsy and bone marrow test done. We have a really good neurosurgeon, and I feel peacefull about that, I am just sick of having to see Shia go through all this crap, even though he is extremely resilient!
Oh! When we were waiting for an X-Ray (i forgot about that test, it was on thursday) we were watching thedisney channel and this little mouse from the imagination movers came on. He had a bow tied to his tail, and was trying to find it to tie up a package. Shia was belly laughing he thought it was so funny, and people were peeking around corners to see where that wonderful noise was coming from. I love it that throughout everything, Shia can laugh hysterically, and cause others joy because if it. That is something that will always stick out to me, and I will remember when all this is through.
I guess to close things up, Josh and i were talking in the car on teh way to drop off Eowynn yesterday to school before we went to the hospital, and i told him that the hardest part for me is giving up control of "fixing" my son's problems, and helping him get better. I can't do it. I can trust that he is in God's hands, because I know that He cares for Shia in a way that i can't, and i am constantly reminded of the meaning of Shia's name (Gift of God). I carried him, i gave birth to him, but he is a gift, and to be a good steward of what God has given me as a blessing, i need to give Shia over to Him daily.
The hardest part for Josh was that he can't protect Shia from what is happening. I won't elaborate on this more because these are his feelings, and i can't express them better than he can!
So, hopefully that gives everyone an idea of where we are as a family, and personally. God is drawing us near, but the cicrumstances suck, basically.
with that I will leave you with a line from a song that won't get out of my head, "i can't let you be, cause your beauty won't allow me," it seems relevant both from the perspective that GOd cant let us be, and i can't leave Shia be because he is just such a beautiful expression on God's love and creation to me.
Josh and I both noticed a bump on teh back of Shia's skull on Oct 24th or around there. On that following Tuesday (Oct 26th? I am putting dates so I can remember all of this) I took him to the dr. and they did an X-ray. The Next day I waited for a reply, and got it on Thursday morning that his X-Ray came back abnormal and they wanted to do a CT of his skull, so Thursday we went in for a CT, and that came back abnormally, so they wanted to do a bone scan, but we waited for that until Monday (Nov 1st). On Monday they had to give hom a waking sedatiob, and injection of dye, then he had his bone scan, and we had some fun laughing when Shia woke up because he was so silly, but that afternoon was rough because he didn't come down from the meds very well. However, when it wore off, he had a great night, we all slept well, and I went into work on Tuesday with the kids.
I got yet another abnormal result from the bone scan, although they did not see the tumor anywhere else on his bones (yes!), but then they reffered us to a neurologist at the Toledo Children's hospital. One that deals with blood disorders and cancer. By this point I am trying not to let my mind freak out with the possibility that my two year old son has a cancerous brain tumor, or something like that. JOsh and I both had and emotional breakdown, and talked about how everything was going. Crying helped, and we could definitely tell that God has been watching over us this whole time. He has comforted us and brought us closer as a family throughout all of this.
Anyway, we had the neurology appointment, and Dr. Strunk told us that Shia had a non cancerous tumor on his skull (i forget the name, i am still waiting for everything in writing from the dr's), but would need some further testing: another full body ct scan, an MRI, a biopsy from a neurosurgeon, and a bone marrow extraction (done while he is under aesthesia for the biopsy). And then after all that, Chemo for 6-9 months to get rid of the tumor. So, yesterday was the CT scan and MRI, and the tests he did great with, but not the prep. Shia is getting smart to the fact that he gets poked, and his made to drink nasty meds and all of that whenever we have to go to the hospital, and it's hard because otherwise he is healthy! He doesn't complain about his head at all, and runs around and says no just like any other two-year-old boy. That makes it easier when we are at home, but extremely hard when he is getting hurt over and over for no apparent reason to him. They put a feeding tube down his nose into his stomach for the CT scan contrast fluid, and they finally got it all down, but we will never do that again if we can help it. He just kept on gagging and throwing the stuff up because he was so upset, and we just had them take it out because there was no way he was going to keep that in for the remainder of the day to try and get the sedation drugs down.
OKay, so now the CT and MRI are done, and we have the neurosurgeon appointment on monday, where I think they are going to tell us when Shia will have his biopsy and bone marrow test done. We have a really good neurosurgeon, and I feel peacefull about that, I am just sick of having to see Shia go through all this crap, even though he is extremely resilient!
Oh! When we were waiting for an X-Ray (i forgot about that test, it was on thursday) we were watching thedisney channel and this little mouse from the imagination movers came on. He had a bow tied to his tail, and was trying to find it to tie up a package. Shia was belly laughing he thought it was so funny, and people were peeking around corners to see where that wonderful noise was coming from. I love it that throughout everything, Shia can laugh hysterically, and cause others joy because if it. That is something that will always stick out to me, and I will remember when all this is through.
I guess to close things up, Josh and i were talking in the car on teh way to drop off Eowynn yesterday to school before we went to the hospital, and i told him that the hardest part for me is giving up control of "fixing" my son's problems, and helping him get better. I can't do it. I can trust that he is in God's hands, because I know that He cares for Shia in a way that i can't, and i am constantly reminded of the meaning of Shia's name (Gift of God). I carried him, i gave birth to him, but he is a gift, and to be a good steward of what God has given me as a blessing, i need to give Shia over to Him daily.
The hardest part for Josh was that he can't protect Shia from what is happening. I won't elaborate on this more because these are his feelings, and i can't express them better than he can!
So, hopefully that gives everyone an idea of where we are as a family, and personally. God is drawing us near, but the cicrumstances suck, basically.
with that I will leave you with a line from a song that won't get out of my head, "i can't let you be, cause your beauty won't allow me," it seems relevant both from the perspective that GOd cant let us be, and i can't leave Shia be because he is just such a beautiful expression on God's love and creation to me.