We are eagerly awaiting discharge. I guess I would be more eager if I had bags packed... ha... ok ok I am simmering down. My mom is with me, and going to help get my stuff together. YAWN I can hardly wait to be home.
Thanks for the love! Will hopefully post more from home!
Tuesday, January 31, 2012
Been quiet.
So we have been quiet the last few hours. We did get the results back from our dr. The tumor was a stage 2 glioma. And since he was unable to get it all we will have frequent monitoring, and meet with an oncologist.
Cancer. Brain cancer. Its a low grade tumor, the dr feels like at this point its a wait and see, with potential of radiation. Most of the tumor was removed. We are thankful. Since its only in stage 2 it was captured early. The dr presented this as though it was good news not bad.
How are we? Joel is doing quite well. He is so positive. Thankful for the chance to fight this.
Me? I need to get off the internet, stop crying and put on my big girl pants. (at least some clean pjs.)
I know this is far from over, far from a death sentence but brain tumor in my husband is scary enough, yet alone.... the word Cancer. So maybe I am over tired, maybe the emotions of the last week are catching up with me. Joel is certain this is the case. We are set to discharge home today. I can not wait. Yet I can. I need some sleep. And evening snuggling our daughter, it will be medicine for our souls.
God is still good. We are SO THANKFUL this was found early. This is one of the richest blessings. We are still believing that Joel is so much tougher than this. Joel feels like its 90% mental and he can and will beat this.
We are still so hopeful of normal life although we will never be the same. We dream of riding bikes with Evey. Going to Hawaii as--- she is obsessed with going... and well we just love it. But for now we take today. We pray we get to go home. We pray it goes smoothly.
Pray for complete healing of the remaining tumor. God has brought it this far and we believe fully our next scan could be completely cancer free. Pray the seizures are done. Pray for our transition today. Pray for me, as I am a bit nervous today. Please keep praying. Thank you for you love prayers and continued positive thoughts. Pray for laughter and joy in the minutes and days ahead. We still firmly believe the best is yet to be seen. This journey is not over, but we are not alone.
Praying4Joel this is my life calling, Please let it be yours.
Cancer. Brain cancer. Its a low grade tumor, the dr feels like at this point its a wait and see, with potential of radiation. Most of the tumor was removed. We are thankful. Since its only in stage 2 it was captured early. The dr presented this as though it was good news not bad.
How are we? Joel is doing quite well. He is so positive. Thankful for the chance to fight this.
Me? I need to get off the internet, stop crying and put on my big girl pants. (at least some clean pjs.)
I know this is far from over, far from a death sentence but brain tumor in my husband is scary enough, yet alone.... the word Cancer. So maybe I am over tired, maybe the emotions of the last week are catching up with me. Joel is certain this is the case. We are set to discharge home today. I can not wait. Yet I can. I need some sleep. And evening snuggling our daughter, it will be medicine for our souls.
God is still good. We are SO THANKFUL this was found early. This is one of the richest blessings. We are still believing that Joel is so much tougher than this. Joel feels like its 90% mental and he can and will beat this.
We are still so hopeful of normal life although we will never be the same. We dream of riding bikes with Evey. Going to Hawaii as--- she is obsessed with going... and well we just love it. But for now we take today. We pray we get to go home. We pray it goes smoothly.
Pray for complete healing of the remaining tumor. God has brought it this far and we believe fully our next scan could be completely cancer free. Pray the seizures are done. Pray for our transition today. Pray for me, as I am a bit nervous today. Please keep praying. Thank you for you love prayers and continued positive thoughts. Pray for laughter and joy in the minutes and days ahead. We still firmly believe the best is yet to be seen. This journey is not over, but we are not alone.
Praying4Joel this is my life calling, Please let it be yours.
Monday, January 30, 2012
Guess what?
Guess who has been up walking?
Guess who did stairs?
Guess who is out on the therapy patio enjoying real air?
(It appears as though he may try and escape.)
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Guess shouted "YAY DUCKY FEEL BETTER!"?
at the sight of this photo? Yes our princess.
------------------------------------------------------------
Still waiting for Dr. to come talk with us. He saw us in the hall and said he would be chatting soon today. Yes, it was awhile go. Am I restless? Yep.
Joel and I are feeling positive. We are encouraged about our future but are taking it one day at a time.
"Feel Good"
Joel talks about how he "feels good" We still haven't heard from the doctor, and are at peace. We are watching a little mindless TV, and Joel is resting again. He slept some this morning... His mind is tired.
Me- Well I am still in my PJs. I am eating. Thanks to friends and the staff. MumMum brought me a fun craft I have laid out to start- mostly to keep me busy. Honestly in down time, I rest. This journey is genuinely exhausting physically and emotionally. But we are encouraged and supported from yet another wonderful nurse, and compassionate staff.
I am proud to work in this hospital. The kindness and love shown from the ER, ICU, Pastoral Care, O.R. and Neuro directly caring for my husband is overwhelming. Not to mention the support from staff that is not directly involved house wide has been amazing. (Especially Peds, NICU and my RT department) So please keep sharing. I feel the love and compassion. Way to live the mission friends. (Our mission is to "Carry on the loving and compassionate mission of Jesus Christ.")
Joel is blown away and has a new respect for my job. Its hard to be a patient and patient family when you are so used to living on the other edge.
So I am going to start my scrap fabric wreath... or shower.... craft... shower... crafting wins. Never mind we are going potty now... then a walk. Joel runs this show.
Keep praying love you.
Me- Well I am still in my PJs. I am eating. Thanks to friends and the staff. MumMum brought me a fun craft I have laid out to start- mostly to keep me busy. Honestly in down time, I rest. This journey is genuinely exhausting physically and emotionally. But we are encouraged and supported from yet another wonderful nurse, and compassionate staff.
I am proud to work in this hospital. The kindness and love shown from the ER, ICU, Pastoral Care, O.R. and Neuro directly caring for my husband is overwhelming. Not to mention the support from staff that is not directly involved house wide has been amazing. (Especially Peds, NICU and my RT department) So please keep sharing. I feel the love and compassion. Way to live the mission friends. (Our mission is to "Carry on the loving and compassionate mission of Jesus Christ.")
Joel is blown away and has a new respect for my job. Its hard to be a patient and patient family when you are so used to living on the other edge.
So I am going to start my scrap fabric wreath... or shower.... craft... shower... crafting wins. Never mind we are going potty now... then a walk. Joel runs this show.
Keep praying love you.
Yet another hospital morning.
Hospital mornings. Hmm much different from morning at home... I can't wait for a home morning. Making breakfast. Snuggling my baby... watching wonderpets... looking forward to a nice morning at home. Joel is looking forward to saying goodbye to middle of the night wake ups... although I will still do this. HA and saying goodbye to 4 times a day blood sugar checks.
But we both know that stability and consistanty are the goals here before we can go home.
Pray for pathology report to be clear, Pray for NO seizures. Pray for the ability to figure out his medications and find what works best for him.
--Jill
But we both know that stability and consistanty are the goals here before we can go home.
Pray for pathology report to be clear, Pray for NO seizures. Pray for the ability to figure out his medications and find what works best for him.
--Jill
Sunday, January 29, 2012
Anxious for nothing.
Today has been stressful. Joel had been doing so great. But this felt like a step back. It was... thankful it was here at the hospital--- I find my heart being anxious tonight. Seizures SUCK. let me just say that much. He has been so lethargic and painful today compared to yesterday. Yetvwas still eager to get up and walk with PT. He is such a trooper. He did pretty well. He drifts to the side when he walks but this will improve.
So far his heart rate is improved tonight. Praying that the extra steroids and seizure meds are what he needed. Due to all the meds, Joel was a bit disconnected and slept. Expected but stinks.
Yet in my heart I keep hearing:
"Be Anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be known to God. And the peace of God which surpasses all comprehension, will guard your hearts and minds in Christ Jesus." Phillippians 4:6-7
Tomorrow we may get our pathology results back. We are obviously eager to find out. I still find it hard to believe that one week ago our life was changed. I want to be home and start our new normal with out the constant fear of seizures. I do have peace as I face another day of unknowns and what ifs.
I appreciate that people are respecting our desire for space, for Joels mind to heal.
We did find out his echo was normal. So his low heart rate is from his brain? potentially
Pray with me. For rest- and that Joel has a much more normal heart rate tonight. AND NO SEIZURES. Pray for continued protection and peace for Joel, Princess and Myself. Praying for good results tomorrow. Pray for MumMum Papa, E and Marky as they are our primary supports.
So far his heart rate is improved tonight. Praying that the extra steroids and seizure meds are what he needed. Due to all the meds, Joel was a bit disconnected and slept. Expected but stinks.
Yet in my heart I keep hearing:
"Be Anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be known to God. And the peace of God which surpasses all comprehension, will guard your hearts and minds in Christ Jesus." Phillippians 4:6-7
Tomorrow we may get our pathology results back. We are obviously eager to find out. I still find it hard to believe that one week ago our life was changed. I want to be home and start our new normal with out the constant fear of seizures. I do have peace as I face another day of unknowns and what ifs.
I appreciate that people are respecting our desire for space, for Joels mind to heal.
We did find out his echo was normal. So his low heart rate is from his brain? potentially
Pray with me. For rest- and that Joel has a much more normal heart rate tonight. AND NO SEIZURES. Pray for continued protection and peace for Joel, Princess and Myself. Praying for good results tomorrow. Pray for MumMum Papa, E and Marky as they are our primary supports.
More stable afternoon.
Joel woke up enough to eat a few bites. He didn't loose any abilities with the seizure but is doped up from all of medications afterward. Thankful I was with him, as he would have fallen otherwise. It lasted close to minutes.
I am getting restless.. I need a craft.. I do love to craft so my mama is going to help with this today.... pintrest has so many ideas but I need to have non-sewing machine or nasty smelling paint activities. So E and MumMum are on it....
A dear friend of mine is going to be doing a thirty-one gifts party with for us. I really hope everyone can take a look at all the neat bags, organizers and other nifty things this company offers!!
http://www.facebook.com/events/176246222479368/ This sale starts on the 1st of February! There is a new line coming out that day!
One week ago our life was so different. I am in awe of how fragile each moment and day is. I am thankful for my husband and his desire to protect our daughter, and care for me through this. I love him.
Feeling the love and prayers. Keep em coming. Joel says he can too.
I am getting restless.. I need a craft.. I do love to craft so my mama is going to help with this today.... pintrest has so many ideas but I need to have non-sewing machine or nasty smelling paint activities. So E and MumMum are on it....
A dear friend of mine is going to be doing a thirty-one gifts party with for us. I really hope everyone can take a look at all the neat bags, organizers and other nifty things this company offers!!
http://www.facebook.com/events/176246222479368/ This sale starts on the 1st of February! There is a new line coming out that day!
One week ago our life was so different. I am in awe of how fragile each moment and day is. I am thankful for my husband and his desire to protect our daughter, and care for me through this. I love him.
Feeling the love and prayers. Keep em coming. Joel says he can too.
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