Dad has been in rehab for almost two weeks now. He is still sleeping a lot and quite tired when not sleeping. We hope to bring him home this week but nothing is set in stone. We will not be able to accept visitors at the house when we bring him home.
We have received many kind cards and notes, thank you. Also, thank you for your prayers, we're sure they're helping him and my mom through this process.
Sunday, November 14, 2010
Monday, November 1, 2010
Post Cranny
The nurses call brain surgeries "crannies" or "cranny" in the singular form. Dad had his fifth today and everything went well. They placed 11 chemo wafers in the tumor cavity and those should last around 6 weeks. We hope this chemo works better than the last. Dad is luckily back in his room and not in ICU. He has been in some pain, which is expected with surgery, and sleeps a lot. We're glad he sleeps, he's recovering well. We hope to bring him home soon.
Thank you all for your prayers.
Thank you all for your prayers.
Thursday, October 14, 2010
Dad Update: Emergency Surgery
Dad had another headache that would not go away, so he went in for a scan. They found some bleeding in his brain, and another tumor, so they set him up for emergency surgery. The surgery went well and he is now resting in the ICU. Miracles are happening again! They said that he would lose vision in his left eye and motor function on his left side, but only hours after surgery, he had not lost any of his eye sight or his motor functioning!
I got an email from Danielle explaining his recovery. I'll post it here and you can here it from her!
"Here is the latest update on Dad. This morning he was looking so much better than yesterday! His swelling has gone down dramatically, even though there is still some. They are still draining fluid, and that could be for a little while longer. The doctors came in and took out one of the pumps, and let him sit up and eat solid foods. He also got up and walked around a bit! The best news though, is that he hasn't lost any of his vision in his left eye like they told us he would, and even though his left side of his body is a little weaker than the right, he has full function!! So he is mending!!
The doctors told us that we are figuring out what is going on with his blood first before we make any other plans for the cancer treatments. The plan is to have him heal up from his surgeries and then we'll figure out the next steps. But remember, he is doing much better than the doctors were expecting!
He was also unblinded from the study. He found out that he was taking the placebo, not the Avastin which could be a blessing itself because the Avastin can cause bleeding so it might have made all this even worse. We are seeing miracles and good things happening so keep up all that praying! It's working!!
Love to all,
Dani"
I got an email from Danielle explaining his recovery. I'll post it here and you can here it from her!
"Here is the latest update on Dad. This morning he was looking so much better than yesterday! His swelling has gone down dramatically, even though there is still some. They are still draining fluid, and that could be for a little while longer. The doctors came in and took out one of the pumps, and let him sit up and eat solid foods. He also got up and walked around a bit! The best news though, is that he hasn't lost any of his vision in his left eye like they told us he would, and even though his left side of his body is a little weaker than the right, he has full function!! So he is mending!!
The doctors told us that we are figuring out what is going on with his blood first before we make any other plans for the cancer treatments. The plan is to have him heal up from his surgeries and then we'll figure out the next steps. But remember, he is doing much better than the doctors were expecting!
He was also unblinded from the study. He found out that he was taking the placebo, not the Avastin which could be a blessing itself because the Avastin can cause bleeding so it might have made all this even worse. We are seeing miracles and good things happening so keep up all that praying! It's working!!
Love to all,
Dani"
Monday, August 30, 2010
Dad Update!
Dad and Mom went on an awesome trip the last week of July funded by an anonymous donor. If you’re reading this, Mr. Anonymous, THANK YOU! They had the best time. They came out to visit ME in Florida! It felt like Christmas having them here all to myself. They also went on a cruise and had an amazing time. They said they didn’t even think about the cancer the whole time they were on the ship, they just relaxed and enjoyed their time together.
On August 3rd, Dad started radiation and Temodar (chemo). He goes to radiation 5 times a week Monday-Friday, and as I type this he only has two weeks left! He also takes his chemo medicine everyday. As their insurance is not paying for the chemo, we thought they would have to pay out-of-pocket the 10,000 a month price tag, but the Commitment To Care Foundation, thanks to many prayers, is providing the chemo free of charge. We are SO GRATEFUL. It is truly a miracle.
The radiation makes Dad tired, but he is starting to feel better as he gets off the Decadron. The Decadron also gave him some diabetes issues, but he will hopefully get off insulin soon. He is also starting to lose his hair, but he looks cool bald. The doctor found some blood clots in his legs, so he also now gets two injections a day for that. My dad, the walking pin-cushion.
Good news! Dad starts the study on September 8th. The study is an experimental drug that has shown amazing results. It is a miracle that he got into it and we are so happy! He will get a 90-minute infusion the first day, then in 2 weeks, a 60-minute infusion, then in two weeks a 30-minutes infusion. If he handles those well, he will continue on the 30-minute.
All in all, Dad is doing well. He is the toughest man alive. Please keep him in your prayers. He is so grateful for all the prayers and help so far. Thank you!
On August 3rd, Dad started radiation and Temodar (chemo). He goes to radiation 5 times a week Monday-Friday, and as I type this he only has two weeks left! He also takes his chemo medicine everyday. As their insurance is not paying for the chemo, we thought they would have to pay out-of-pocket the 10,000 a month price tag, but the Commitment To Care Foundation, thanks to many prayers, is providing the chemo free of charge. We are SO GRATEFUL. It is truly a miracle.
The radiation makes Dad tired, but he is starting to feel better as he gets off the Decadron. The Decadron also gave him some diabetes issues, but he will hopefully get off insulin soon. He is also starting to lose his hair, but he looks cool bald. The doctor found some blood clots in his legs, so he also now gets two injections a day for that. My dad, the walking pin-cushion.
Good news! Dad starts the study on September 8th. The study is an experimental drug that has shown amazing results. It is a miracle that he got into it and we are so happy! He will get a 90-minute infusion the first day, then in 2 weeks, a 60-minute infusion, then in two weeks a 30-minutes infusion. If he handles those well, he will continue on the 30-minute.
All in all, Dad is doing well. He is the toughest man alive. Please keep him in your prayers. He is so grateful for all the prayers and help so far. Thank you!
Wednesday, July 28, 2010
Play time
Mom and Dad are playing this week. A long-deserved, long-delayed period of play.
First, fun with kiddos in Florida.
Second, fun on a cruise ship.
Third, fun at Disneyworld with kiddos.
Fourth, fun at the hospital to get chemo. Wait, that's fun? Oh, oops.
But...if you know my dad, somehow he will make chemo something he can crack a joke about, find some silver lining to, teach a lesson from.
First, fun with kiddos in Florida.
Second, fun on a cruise ship.
Third, fun at Disneyworld with kiddos.
Fourth, fun at the hospital to get chemo. Wait, that's fun? Oh, oops.
But...if you know my dad, somehow he will make chemo something he can crack a joke about, find some silver lining to, teach a lesson from.
Tuesday, June 29, 2010
Hello all followers, friends and family. We have an adventure ahead of us, as Dad called it, and know you all are wanting to be along for the ride. There was great advice given today from good friends of Alice and Joe, the Dennings. Kyle has just been through these same experiences and suggested keeping a blog. There are many contributors to this family blog, so many different voices and experiences will be heard. We hope most of all to chronicle the feelings, the blessings and the miracles which we, as a family, have faith will happen.
Monday, July 27, 2009
Family Meeting Notes for August
First, thank you to all siblings willing to participate in the resurrection of our family meeting. We really need to work together to make it a quick, productive and less chatty meeting. We are very social and we love each other dearly, but fighting through the conversations is frustrating. I suggest we come prepared to relate any and all activities that are relevant to our family. This should be done with only one person speaking and just make it a quick calendaring event. After that, if there are events, etc., that need "planning" we can concentrate on that, excusing those not interested to converse in another room :) I hope my taking this head-on doesn't offend, but, like I said, I was tired of always being out of the loop and it shouldn't be all Mom's responsibility. And that leads to...
Second, here is the recap and dates for things we talked about on Sunday. Pull out those blackberrys (ies?) and calendars and write these down.
(July 31: Gerber kids at Grandma's in afternoon and for dinner)For Mom's calendar :)
August 2: Jackson's Blessing @ 11:00 am at Smith's church in Provo. Lunch directly after Sacrament Meeting at Smith's house. Driving instructions and any food assignments will be sent via email from Alison to ya' all.
August 6: Bridal Shower for Grandma, Barbara, ?? whatever we are calling her at 7:00 PM at Eagle Summit Park in Lehi, Utah. (These following items are also more complete on The Missing Linc blog.) This event is actually for the whole family. Come with husband and kids and maybe a dessert to share.
August 7: Temple session with Grandpa (and others) at Mt. Timp Temple. We are doing the 4:00 session so be in the chapel by 3:30. Any babysitting needs can be directed to my kids.
Also that night, family dinner at Mom and Dad's after session - 6:30 ish?
August 8: Wedding day! All kids and "assigned" babysitters be at the Gerber's by 2:00 to drop off and give instructions. Be at the temple by 2:30. Pictures will be after the ceremony. We decided NOT to hassle with kids at the temple pictures, so babysitters, plan on at least 2 hours.
Reception at Raynes' from 5:00 to 8:00. I know we will all be very helpful wherever we are needed.
August 18: Irrigation @ 3:00 pm. Dinner and Starting school get-together? Any excuse to get together, ain't that great!! (Shut up!)
August 23: Temple Dedication, babysitting available by Bryan and Dani at Grandma's. Just let them know which session. Dinner at regular time.
August 27: Starting the Nielsen Family Reunion at 5:30pm. We are splitting kids between Mom's (young children and middle children) and Stefanie's (teens and those who act like them). What? No place for adults and those that act like them? No, not you YET David :)
August 28: Activities start at Wines Park in Lehi. We will be there for a few hours and eat lunch. Move to the Lehi Pool until 4:00 or whenever you have had it. We will end up at Cascade Park for water games and inflatable fun and dinner. Done around 8:00 or 9:00. We are planning on the whole day, so block it out NOW because Mom will need our help.
August 29: Family dinner at 2:30 at Mom's. This is the Whole Nielsen family and the end of our reunion. See, not too painful!
That's all folks! Thanks and keep tabs on this blog as this is where we will update things. Love to all.
Second, here is the recap and dates for things we talked about on Sunday. Pull out those blackberrys (ies?) and calendars and write these down.
(July 31: Gerber kids at Grandma's in afternoon and for dinner)For Mom's calendar :)
August 2: Jackson's Blessing @ 11:00 am at Smith's church in Provo. Lunch directly after Sacrament Meeting at Smith's house. Driving instructions and any food assignments will be sent via email from Alison to ya' all.
August 6: Bridal Shower for Grandma, Barbara, ?? whatever we are calling her at 7:00 PM at Eagle Summit Park in Lehi, Utah. (These following items are also more complete on The Missing Linc blog.) This event is actually for the whole family. Come with husband and kids and maybe a dessert to share.
August 7: Temple session with Grandpa (and others) at Mt. Timp Temple. We are doing the 4:00 session so be in the chapel by 3:30. Any babysitting needs can be directed to my kids.
Also that night, family dinner at Mom and Dad's after session - 6:30 ish?
August 8: Wedding day! All kids and "assigned" babysitters be at the Gerber's by 2:00 to drop off and give instructions. Be at the temple by 2:30. Pictures will be after the ceremony. We decided NOT to hassle with kids at the temple pictures, so babysitters, plan on at least 2 hours.
Reception at Raynes' from 5:00 to 8:00. I know we will all be very helpful wherever we are needed.
August 18: Irrigation @ 3:00 pm. Dinner and Starting school get-together? Any excuse to get together, ain't that great!! (Shut up!)
August 23: Temple Dedication, babysitting available by Bryan and Dani at Grandma's. Just let them know which session. Dinner at regular time.
August 27: Starting the Nielsen Family Reunion at 5:30pm. We are splitting kids between Mom's (young children and middle children) and Stefanie's (teens and those who act like them). What? No place for adults and those that act like them? No, not you YET David :)
August 28: Activities start at Wines Park in Lehi. We will be there for a few hours and eat lunch. Move to the Lehi Pool until 4:00 or whenever you have had it. We will end up at Cascade Park for water games and inflatable fun and dinner. Done around 8:00 or 9:00. We are planning on the whole day, so block it out NOW because Mom will need our help.
August 29: Family dinner at 2:30 at Mom's. This is the Whole Nielsen family and the end of our reunion. See, not too painful!
That's all folks! Thanks and keep tabs on this blog as this is where we will update things. Love to all.
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