This one courtesy of GRANT:
On the way to Gavin's soccer game the other night.
Grant: Mom, I wish I was super strong.
Me: You do?
Grant: Yeah. It would be so cool if I was so strong that I could, like, pick up Daddy.
Me: Yeah, that would be cool. You would be strong if you could do that.
Grant: Yeah, then I could lift him over the snow and ice and he would be able to come to our soccer games.
The boys play soccer in an indoor facility, but the parking lot is snow-packed gravel, and the sidewalk is always snow-packed and icy. Brian hasn't been to one of their games since early December.
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This one brought to you by BRIAN;
After relating the above story to him,
Brian: What do you mean? I go to their soccer games.
Me: No, honey. Remember the walk getting up to the complex is so full of snow and ice we decided it wasn't worth the risk of your falling? You haven't been to a game in over a month.
Brian: Really? I thought I had. Are you sure?
Me: Yeah, but it's no big deal. They don't really pay that close attention to who is there once they start anyway.
KEEP BELIEVING
Your heart-breakers are definitely breaking my heart.
ReplyDeleteoh, tears. i've been where you are now with the progression of this horrible disease (parent not spouse), and i'm just praying for some peace for you.
ReplyDeleteThanks for the pics....Nice picture. I am praying and thinking about all of you...KEEP BELIEVING:)
ReplyDeleteThat is truely heart-breaking, on both accounts. I am praying for you to have the strength and the wisdom for the right words to say as you go through all this.
ReplyDeleteSo sorry. I feel the same heart-squeezing hurt when my mom says, "When I get well, we're gonna..."
ReplyDeleteOhhhh. This is truly heart breaking. Love coming your way...
ReplyDeleteYour son has a heart that shines out here. Sending you prayers.
ReplyDeleteMy heart just aches for you all. I continue to pray for you but feel so helpless. (Although I guess I should never feel helpless when I call on God.) I guess what I mean to say is that I wish I was near you and could do something for you.
ReplyDeleteIs there anything all of your blog friends that don't live near you can do to help you? Please let me know.
Definitely a tear-jerker. I second Beth's comment above. Is there anything your blog friends could do to help? Please don't hesitate to ask.
ReplyDeletePraying in Ohio.
Angie,
ReplyDeleteWhile I certainly am writing from a perspective of relative ignorance regarding the specifics of Brian's medical condition, I feel compelled by the Spirit to write again to you.
My wife indicated Brian has a VP shunt. In my imagination I envision you bringing Brian to the oncologist after these symptoms begin. The oncologist reviews the scenario and tells you that Brian's cancer is not clinically active and has no recommendations to help his current situation. You then take him to the neurosurgeon who reviews his normal CT of the brain, reassures you his VP shunt is functioning properly and also has nothing to offer you. Meanwhile, your husband continues to do poorly.
For some reason I believe Brian's VP shunt is occluded, leading to his symptoms of confusion, somnolence, problems ambulating, and vomiting. I called a neuroradiology friend of mine and asked how can one determine if a VP shunt is open and working properly. He replied that a nuclear medicine VP shunt patency study can help determine this. If the tracer is seen going into the abdominal cavity, the shunt is open. My friend will investigate the matter further to check for other possibilities.
This procedure would require several serial scans to track the tracer into the abdominal cavity. It would also require that Brian have a spinal tap to introduce the tracer into the cerebral spinal fluid. However, a spinal tap would allow direct measurement of the cerebral spinal fluid pressure to see if it is elevated and allow the fluid to be analyzed for occult infection.
I imagine the neurosurgeon will be refractory to such an evaluation, citing risks of introducing infection (quite rare since it is performed under sterile conditions) and risk of injury if indeed the pressure in the cerebral spinal fluid is high and a spinal tap performed "decompresses" the brain downward toward the spine. This latter risk is minimized by the fact that the CT of the brain is normal, implying no compromise in the structural/anatomic integrity of the brain.
Yet, I would encourage you to hold the neurosurgeon's feet to the fire. How can the neurosurgeon be sure the shunt is working properly with a normal CT of the brain? Couldn't the volume loss of the tumor increase the intracranial space masking hydrocephalus on the CT and shunt dysfunction? If the neurosurgeon asks why you are so persistent, a response expressing healthy concern over your failing husband with his current unresolved symptoms and a healthy skepticism of the results garnered thus far is appropriate. Telling the neurosurgeon, "Some guy wrote this on my blog," won't be overly convincing. An appeal to your primary care physician may also be beneficial.
I wish you, Brian and your family God's blessing and will continue to pray God grants you wisdom and strength.
Paul (from Cheryl's blog site)
misterbmt@gmail.com
Angie {hugs]
ReplyDeleteblessings and so much more, but you already knew that.
What a sweet picture of the two of them. That is certainly a heartbreaker, but Grant and Gavin have something so many kids long for and will never have. They have the knowledge that their daddy loved them so much and was so proud of them for everything they did, no matter whether he was in the stands or not.
ReplyDelete