Monday, June 25, 2012
Day Out With THOMAS!!! - Friday
YEP - they have Day Out With Thomas here in Indiana too! We drove the 2 hrs for it on Friday since he had an 8 AM appt and we wanted to miss the crowd sure to be there on Saturday. Elan LOVES Sir Toppenhatt (most kids find him scary). Not much more but here are pictures...
We had a great time!
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| The play tent area - 3 sets of thomas and the gang! |
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| Pointing at Thomas in the picture and then again to the REAL thomas pulling us - we were in the FRONT passenger car!!!! |
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| See Thomas in the background? We were in the first car! |
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| This was all part of the admission fee too. BOy were they proud to do this alone! Notice how Finn has gum - huge reward for good behavior! |
Sunday, June 24, 2012
Day 17! - Friday
Elan had his appointment at 8 AM today so starting writing this in the waiting room. If you haven't noticed it usually takes me days to finish one posting so I am sure kind of confusing once it finally is done - sorry but only way I can get it done!
I can't believe we are already doing day 17 - going so quickly! We have only to day 21 as full Cranial Spinal radiation and then going to the boost for a total of 33 days. The "boost" means just a focused beam on his area of cancer which will be given a much higher dose to the cancer area but leave everything else alone. The radiation so far was to get rid of any microscopic tumors but now it will attack the main area. WE had to do the CS since it had metastasized to a little further out from the original tumor so not wanting to chance it. This is his one shot so going full on. Still MUCH less side effects than any other option. It won't effect his main organs for one which is super!
Elan has been fighting a bit of a head cold but nothing to stop his treatment. He just has a runny nose and a bit of a cough. Today the nurses were so impressed with how much they suctioned out. Man, I love that kind of stuff too - and zits - I loved that :). Our kids are so healthy and rarely get sick - really bums me out since his body isn't just working on the radiation but also a cold. I really believe the cold is due to us taking him off of his Standard Process herbs and minerals for a week - but he is soldiering on! HE is back on them again and already doing much better!
He didn't throw up yesterday which is great! It is so tough to balance his nausea with his caloric intake - but he is maintaining his weight which is huge. Everyone here said he is really textbook and doing fantastic. They really know how to make everyone feel great here. I love how they are so reassuring and every time we ask if there is anything else they say "you two are amazing at what you are doing - doing more than anyone can". I am not sure if they say to everyone (most likely) but still feels good to hear.
We had to keep Finn from camp yesterday (Thursday) because we told him if he acted up he would have to stay home - well we had to follow through which ended up being a good thing. The camp counselors said he wasn't too bad but he was pushing kids to be first in line and we need to "nip this in the bud". He was quite happy after it all and listened to us the whole day too. He came with us to Elan's treatment and we tried to see a family/kid counselor at 2PM but somehow communication was messed up and we went to one only for adults. So now we have one on Tuesday for the family with the cancer center counselor.
I did talk with the adult one for a few minutes one on one and she was so kind and reassuring. I told her all of what we have gone through, the decisions we made and how we came to our conclusions. She kept saying that she has nothing to suggest but to keep doing what we are doing. She is so loving and said how healthy we are in how we are handling it and our relationship. She was so impressed with Erik and my decision making and kept saying " You two are really at a great place for all you are going through". I really think a lot has to do with our strong communication in the past which helps us now. Even though we don't have much time to communicate anymore! She said to just keep the positivity and positive people in our life and keep negative things at bay - which we have done to our best ability. Man, if I knew going to a shrink would be so amazingly "pat on the back" I would have gone at the age of 2!
I can't believe we are already doing day 17 - going so quickly! We have only to day 21 as full Cranial Spinal radiation and then going to the boost for a total of 33 days. The "boost" means just a focused beam on his area of cancer which will be given a much higher dose to the cancer area but leave everything else alone. The radiation so far was to get rid of any microscopic tumors but now it will attack the main area. WE had to do the CS since it had metastasized to a little further out from the original tumor so not wanting to chance it. This is his one shot so going full on. Still MUCH less side effects than any other option. It won't effect his main organs for one which is super!
Elan has been fighting a bit of a head cold but nothing to stop his treatment. He just has a runny nose and a bit of a cough. Today the nurses were so impressed with how much they suctioned out. Man, I love that kind of stuff too - and zits - I loved that :). Our kids are so healthy and rarely get sick - really bums me out since his body isn't just working on the radiation but also a cold. I really believe the cold is due to us taking him off of his Standard Process herbs and minerals for a week - but he is soldiering on! HE is back on them again and already doing much better!
He didn't throw up yesterday which is great! It is so tough to balance his nausea with his caloric intake - but he is maintaining his weight which is huge. Everyone here said he is really textbook and doing fantastic. They really know how to make everyone feel great here. I love how they are so reassuring and every time we ask if there is anything else they say "you two are amazing at what you are doing - doing more than anyone can". I am not sure if they say to everyone (most likely) but still feels good to hear.
We had to keep Finn from camp yesterday (Thursday) because we told him if he acted up he would have to stay home - well we had to follow through which ended up being a good thing. The camp counselors said he wasn't too bad but he was pushing kids to be first in line and we need to "nip this in the bud". He was quite happy after it all and listened to us the whole day too. He came with us to Elan's treatment and we tried to see a family/kid counselor at 2PM but somehow communication was messed up and we went to one only for adults. So now we have one on Tuesday for the family with the cancer center counselor.
I did talk with the adult one for a few minutes one on one and she was so kind and reassuring. I told her all of what we have gone through, the decisions we made and how we came to our conclusions. She kept saying that she has nothing to suggest but to keep doing what we are doing. She is so loving and said how healthy we are in how we are handling it and our relationship. She was so impressed with Erik and my decision making and kept saying " You two are really at a great place for all you are going through". I really think a lot has to do with our strong communication in the past which helps us now. Even though we don't have much time to communicate anymore! She said to just keep the positivity and positive people in our life and keep negative things at bay - which we have done to our best ability. Man, if I knew going to a shrink would be so amazingly "pat on the back" I would have gone at the age of 2!
Saturday and Sunday
Our dear friends Jesse and Heather came to visit Saturday afternoon after driving 7 hours to come here. How wonderful of them, right? Heather and I grew up together from 4th grade on as well as did volunteer work right out of high school putting 1000 hours in one year - so we know each other quite well to say the least. We have continued our friendship throughout the years and now include our husbands :)
They arrived right around 3:30 when we put Elan down for a nap so we chatted and had a great vodka and tonic since it is the weekend after all (not quite 5 when we started but 5 somewhere :0)! After Elan's nap we headed to the Taste of Bloomington. Basically waiting in line for food but ended up being a great time even though rocking out to a Pantera cover band wasn't EXACTLY the best soundtrack. Just nice to be together and have a bit of bonding time again. Jesse had fun with Finn on his shoulders and gave poor Erik's back a break.
We then headed back home and just caught up for the rest of the evening. We then used Spotify to change the soundtrack a bit - boy is Spotify AWESOME!!!! So need to check it out if you haven't.
I just cry thinking about them taking the time out of their crazy hectic lives to drive and see us! We just needed some normal time and they gave us just that. Fun to talk about old times catch up all around.
We slept in (not sure if O'Neils would classify it as such) and then had breakfast here and chatted some more. Finn showed off with all of his toys from the Proton Center we are borrowing and Elan acted adorable as always. He was a bit cranky but went down for a nap easily which took care of that. Both boys stayed up waaaaay too late (11 PM) and boomeranged all night - expected since super fun Heather and Jesse here!
After they left we both felt so loved! They just poured on the love and kind remarks! Once again we have been surrounded by positive people. They took off around 1 to head back to Dubuque.
We then decided to head to the 2:30 congregation meeting since they were gone - we arrived and 2 cars in the parking lot! This congregation went to the District Convention this weekend - wouldn't you know it? ARrrgh!
So we went home to change since we had planned on going over to a family's home from the congregation that we have been going to since we have been here and had their District last weekend. Lisa (the mom) called and change of plans... since it was so hot it was decided to meet at the mall. Elan can't handle a bunch of sun and heat now with the radiation treatment (his head looks pretty red at times during the day, like a sun burn) so it was decided to meet at the mall and pet the puppies at the pet store. We headed there and had a great time! So sweet of them to include us in their weekend! They had their kids do the trampoline jump with harnesses and they paid for Finn - how generous! Finn was so concerned as to how he was doing it but had a blast. We plan on getting together again with them during the week - somewhere inside since 100 plus forecasted.
CONCLUSION:
Boy did I luck out with fantastic friends I grew up with in Dubuque! I have known them from 4th grade on and just can't believe how everyone has been there for us. I guess when something like this happens no matter how long it has been we all rally around each other. I feel like one of those sappy movies like the YA YA sisterhood, Traveling Pants or something. We just need to start a quilt together or mail jeans back and forth for it to be just that :). The Lewis girls and family - all 3 have been so super amazingly supportive during this. Cindy LEAVING her 3 boys with Aaron and getting on a plane (if you know Cindy this is crazy!!!) - the Potter girls and families with how they are always amazingly kind, understanding, and generous and (great bakers!!!) The Beresford family and Hannah (Hannah left her kiddos and her awesome husband too for us in Charlotte while Elan was in the hospital - but planes not as big of an issue - but still AWESOME!). Beth and Nate (who I literally stood behind all 4th grade - last name Duccini and mine was Dykstra DON'T LAUGH!) her loving family and her crafty ways (will post a picture of the adorable PJ's she made Elan CUTE!) and many, many others who have done loving things. I have known all since r4th grade and they are still so here for me and my family!!! I just hope our kids have such a bond of friendship too during their lives. I know we have many, many friends and family for us who throw so much love and positive energy and prayers towards us but just something about someone who knew you when you didn't drive, had REALLY bad haircuts - (thanks girls since I had super cool hair with NO bangs before the slumber party and awful hair after it!)., awful taste in clothes etc. Just makes things a bit easier today.
Photos:
They arrived right around 3:30 when we put Elan down for a nap so we chatted and had a great vodka and tonic since it is the weekend after all (not quite 5 when we started but 5 somewhere :0)! After Elan's nap we headed to the Taste of Bloomington. Basically waiting in line for food but ended up being a great time even though rocking out to a Pantera cover band wasn't EXACTLY the best soundtrack. Just nice to be together and have a bit of bonding time again. Jesse had fun with Finn on his shoulders and gave poor Erik's back a break.
We then headed back home and just caught up for the rest of the evening. We then used Spotify to change the soundtrack a bit - boy is Spotify AWESOME!!!! So need to check it out if you haven't.
I just cry thinking about them taking the time out of their crazy hectic lives to drive and see us! We just needed some normal time and they gave us just that. Fun to talk about old times catch up all around.
We slept in (not sure if O'Neils would classify it as such) and then had breakfast here and chatted some more. Finn showed off with all of his toys from the Proton Center we are borrowing and Elan acted adorable as always. He was a bit cranky but went down for a nap easily which took care of that. Both boys stayed up waaaaay too late (11 PM) and boomeranged all night - expected since super fun Heather and Jesse here!
After they left we both felt so loved! They just poured on the love and kind remarks! Once again we have been surrounded by positive people. They took off around 1 to head back to Dubuque.
We then decided to head to the 2:30 congregation meeting since they were gone - we arrived and 2 cars in the parking lot! This congregation went to the District Convention this weekend - wouldn't you know it? ARrrgh!
So we went home to change since we had planned on going over to a family's home from the congregation that we have been going to since we have been here and had their District last weekend. Lisa (the mom) called and change of plans... since it was so hot it was decided to meet at the mall. Elan can't handle a bunch of sun and heat now with the radiation treatment (his head looks pretty red at times during the day, like a sun burn) so it was decided to meet at the mall and pet the puppies at the pet store. We headed there and had a great time! So sweet of them to include us in their weekend! They had their kids do the trampoline jump with harnesses and they paid for Finn - how generous! Finn was so concerned as to how he was doing it but had a blast. We plan on getting together again with them during the week - somewhere inside since 100 plus forecasted.
CONCLUSION:
Boy did I luck out with fantastic friends I grew up with in Dubuque! I have known them from 4th grade on and just can't believe how everyone has been there for us. I guess when something like this happens no matter how long it has been we all rally around each other. I feel like one of those sappy movies like the YA YA sisterhood, Traveling Pants or something. We just need to start a quilt together or mail jeans back and forth for it to be just that :). The Lewis girls and family - all 3 have been so super amazingly supportive during this. Cindy LEAVING her 3 boys with Aaron and getting on a plane (if you know Cindy this is crazy!!!) - the Potter girls and families with how they are always amazingly kind, understanding, and generous and (great bakers!!!) The Beresford family and Hannah (Hannah left her kiddos and her awesome husband too for us in Charlotte while Elan was in the hospital - but planes not as big of an issue - but still AWESOME!). Beth and Nate (who I literally stood behind all 4th grade - last name Duccini and mine was Dykstra DON'T LAUGH!) her loving family and her crafty ways (will post a picture of the adorable PJ's she made Elan CUTE!) and many, many others who have done loving things. I have known all since r4th grade and they are still so here for me and my family!!! I just hope our kids have such a bond of friendship too during their lives. I know we have many, many friends and family for us who throw so much love and positive energy and prayers towards us but just something about someone who knew you when you didn't drive, had REALLY bad haircuts - (thanks girls since I had super cool hair with NO bangs before the slumber party and awful hair after it!)., awful taste in clothes etc. Just makes things a bit easier today.
Photos:
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| Finn and Jesse at the Taste of Bloomington - super hot out! |
Thursday, June 21, 2012
Last Night - Wed
Yesterday we had a pretty normal day. We took Elan in for treatment and a decent hour of 8:30 AM. SO much easier to have a normal structured day when he goes in early. When we had my grandparents here he was at 10 and 11 which was horrific! Remember we can't feed the kid so try to keep him distracted. No matter what time he goes in though he gets messed up with napping since he is sedated and given a nap that way. It makes it tough when it comes to bedtime. Of course Finn can't go to sleep if Elan isn't or if we have Elan in his crib crying. A small price to pay for Elan getting the treatment he needs though.
We found out about a family resource center associated with IU Health which has information regarding social workers and publications for kids about cancer so we of course headed there before picking Finn up from camp. They didn't end up have much for kids/siblings (seems to be a common occurrence but much better than Charlotte) but the woman there was great for me to talk with. You can tell the folks here are very well trained with just the right words and questions regarding rare and aggressive cancer - they should be since it is the cancer resource center. She also wanted to make sure we have the proper support. I explained how it is amazing but we have been very fortunate to have a great group of friends and family who are only 100% positive around us. I told her how the congregation here has been fantastic and how it is amazing how those who are super negative just kind of aren't around. We know it is another answer to prayers since those who are negative really send us into a tailspin. It isn't the time or place in our lives to deal with anything remotely negative - good to have it not an issue!
Terri - the lady at the Cancer center is an Oncology nurse and really was the first one to come out and give me comfort regarding the Elan protocol we have created and true hope based on what she has seen from other cases on our diet and supplement side of things. Every doctor besides Dr. Douglas basically says diet doesn't make a difference. Dr. Douglas is open and has seen has difference in people but can't say if it is the TCM, diet or radiation but at least not shutting it down. She said our idea about the cookbook was awesome and really needed (so you can see why I liked her). Something I can do in the future for a distraction if necessary - as if I don't have enough to distract me :).
We picked Finn up, had a normal afternoon of snack then nap. We then headed to the congregation meeting that night as Elan was feeling great and smiley. We were about 30 seconds from the closing song and prayer when all of the sudden he started coughing - which then made him throw up! Of course this was the one night Finn wanted to sit 3 rows from the front so everyone saw what happened. It had to also be his feeding from 2 hrs before which had all of his herbs with turmeric so quite a staining throw up. The friends were so kind about it and helped us in the Men's bathroom clean him up. They also took care of the seat for us back in the auditorium. Several called the next day to check in on us too. All radiation related but first time so far out from a feeding. After he did it though back to smiling! Such a kid! He just coughed and it made it happen - all the doctors said not to worry about it so we aren't - we have enough to keep us busy with worry that is for sure!
We found out about a family resource center associated with IU Health which has information regarding social workers and publications for kids about cancer so we of course headed there before picking Finn up from camp. They didn't end up have much for kids/siblings (seems to be a common occurrence but much better than Charlotte) but the woman there was great for me to talk with. You can tell the folks here are very well trained with just the right words and questions regarding rare and aggressive cancer - they should be since it is the cancer resource center. She also wanted to make sure we have the proper support. I explained how it is amazing but we have been very fortunate to have a great group of friends and family who are only 100% positive around us. I told her how the congregation here has been fantastic and how it is amazing how those who are super negative just kind of aren't around. We know it is another answer to prayers since those who are negative really send us into a tailspin. It isn't the time or place in our lives to deal with anything remotely negative - good to have it not an issue!
Terri - the lady at the Cancer center is an Oncology nurse and really was the first one to come out and give me comfort regarding the Elan protocol we have created and true hope based on what she has seen from other cases on our diet and supplement side of things. Every doctor besides Dr. Douglas basically says diet doesn't make a difference. Dr. Douglas is open and has seen has difference in people but can't say if it is the TCM, diet or radiation but at least not shutting it down. She said our idea about the cookbook was awesome and really needed (so you can see why I liked her). Something I can do in the future for a distraction if necessary - as if I don't have enough to distract me :).
We picked Finn up, had a normal afternoon of snack then nap. We then headed to the congregation meeting that night as Elan was feeling great and smiley. We were about 30 seconds from the closing song and prayer when all of the sudden he started coughing - which then made him throw up! Of course this was the one night Finn wanted to sit 3 rows from the front so everyone saw what happened. It had to also be his feeding from 2 hrs before which had all of his herbs with turmeric so quite a staining throw up. The friends were so kind about it and helped us in the Men's bathroom clean him up. They also took care of the seat for us back in the auditorium. Several called the next day to check in on us too. All radiation related but first time so far out from a feeding. After he did it though back to smiling! Such a kid! He just coughed and it made it happen - all the doctors said not to worry about it so we aren't - we have enough to keep us busy with worry that is for sure!
Friday - District Convention
Well you read that right - we were insane enough to take the one Friday the center was closed for maintenance while we are here to head to an English District Convention in the area since we will be missing the one for our congergation in Charlotte while we are here.
For those of you who have no idea what I am talking about it is something Jehovah's Witnesses look forward to once a year where we get together in "districts" or multiple congregations for discourses, usually around 5,000 to 10,000 people in attendance per convention with around 10 to 15 million attending worldwide per year having the same themes/discourses presented.
Every year it is 100% upbuilding and full of spiritual encouragement - just what we need ESPECIALLY now! It is held for 3 days and we knew that was a bit of an undertaking for Elan all at one time so thought we would break it up a bit over the summer.
So Elan woke up and still had some of his hair and I knew it would shed throughout the day but I felt better to be among a crowd of loving people then at home moping around and depressed. We drove the 2 1/2 hrs to the one for this weekend and boy was it an AWFUL nightmare but a few fun times scattered in... here are the highlights of why bad:
No interstates, just 2 lane curvy highways
2 hr late start
- both boys should have slept another 2 hrs - just guess how Finn was
- Elan threw up in the McDonald's parking lot and an older man in his mid 70's who worked there which I chatted with briefly while buying a coffee decided it was a grand time to chat us up by our car while we are cleaning our butt naked child with his Mickey button hanging out and all thrown up on. He was either really blind, out of it - mentally, or just so interested in telling us about himself to even notice what we were doing. He was quite kind and told us he donates to St. Jude every year and asked if we were headed to the local water park (yeah right in dress clothes - why I state #1 or # 2 above is correct). We then explained we were on our way to Evansville, IN for our annual District Convention and he said his wife was one of Jehovah's Witnesses. We of course said how nice and did our best to "wrap it up" with him but of course he asked our names and he told us all about where she attended etc (again while my child was covered in throw up and we were sponging him down enough to take him into the bathroom). Erik was glaring at me saying "ignore him!". He was so sweet and kind and gentile I just couldn't!
Well we cleaned Elan up and loaded them in the car - popped in Toy Story (TV in the car is now my best friend - man do I feel bad for my pious thoughts 6 months ago and my children's lack of TV knowledge - those days are way over!) and drove on. 30 minutes later a call from this man's wife! she was thrilled we met her husband and thought we were so kind etc. So ended up being a nice deal after all and while writing this realize it was indeed a real blessing to have had a nice person there during such a trying time.
So we get to the location (thankfully Indiana has both central and Eastern so we gained an hour!) for lunch. Basically we enjoyed ourselves but decided we need to really pull back on what our expectations are for ourselves as we go forward. There was about 6,000 in attendance and we met several nice families during the lunchtime. I fed Elan in the First Aid room and everyone was so kind - of course it is always staffed with at least one RN and several other medically trained individuals so they are used to the whole deal. THey were so compassionate and helped me feel good.
The highlight of the program for us was a talk about being heartfelt towards prayer and ways to apply it. There was also an experience mentioned regarding a family going through a child's serious health issue and how the congergation was really there for them. We have really felt that in our congergation in Charlotte as well as the people in the one here we are visiting.
Here is a copy of the program so you can understand what is discussed and why we feel so important for us to go to be encouraged. In reality it really was super encouraging however not the wisest thing for Elan after the fact. It wasn't so bad for him as it was for Erik and me. He feels fine after vomitting - we just have to pick it up!
Link to worldwide locations for one near you: http://www.jw-media.org/gbl/20120518.htm
xoxo
For those of you who have no idea what I am talking about it is something Jehovah's Witnesses look forward to once a year where we get together in "districts" or multiple congregations for discourses, usually around 5,000 to 10,000 people in attendance per convention with around 10 to 15 million attending worldwide per year having the same themes/discourses presented.
Every year it is 100% upbuilding and full of spiritual encouragement - just what we need ESPECIALLY now! It is held for 3 days and we knew that was a bit of an undertaking for Elan all at one time so thought we would break it up a bit over the summer.
So Elan woke up and still had some of his hair and I knew it would shed throughout the day but I felt better to be among a crowd of loving people then at home moping around and depressed. We drove the 2 1/2 hrs to the one for this weekend and boy was it an AWFUL nightmare but a few fun times scattered in... here are the highlights of why bad:
No interstates, just 2 lane curvy highways
2 hr late start
- both boys should have slept another 2 hrs - just guess how Finn was
- Elan threw up in the McDonald's parking lot and an older man in his mid 70's who worked there which I chatted with briefly while buying a coffee decided it was a grand time to chat us up by our car while we are cleaning our butt naked child with his Mickey button hanging out and all thrown up on. He was either really blind, out of it - mentally, or just so interested in telling us about himself to even notice what we were doing. He was quite kind and told us he donates to St. Jude every year and asked if we were headed to the local water park (yeah right in dress clothes - why I state #1 or # 2 above is correct). We then explained we were on our way to Evansville, IN for our annual District Convention and he said his wife was one of Jehovah's Witnesses. We of course said how nice and did our best to "wrap it up" with him but of course he asked our names and he told us all about where she attended etc (again while my child was covered in throw up and we were sponging him down enough to take him into the bathroom). Erik was glaring at me saying "ignore him!". He was so sweet and kind and gentile I just couldn't!
Well we cleaned Elan up and loaded them in the car - popped in Toy Story (TV in the car is now my best friend - man do I feel bad for my pious thoughts 6 months ago and my children's lack of TV knowledge - those days are way over!) and drove on. 30 minutes later a call from this man's wife! she was thrilled we met her husband and thought we were so kind etc. So ended up being a nice deal after all and while writing this realize it was indeed a real blessing to have had a nice person there during such a trying time.
So we get to the location (thankfully Indiana has both central and Eastern so we gained an hour!) for lunch. Basically we enjoyed ourselves but decided we need to really pull back on what our expectations are for ourselves as we go forward. There was about 6,000 in attendance and we met several nice families during the lunchtime. I fed Elan in the First Aid room and everyone was so kind - of course it is always staffed with at least one RN and several other medically trained individuals so they are used to the whole deal. THey were so compassionate and helped me feel good.
The highlight of the program for us was a talk about being heartfelt towards prayer and ways to apply it. There was also an experience mentioned regarding a family going through a child's serious health issue and how the congergation was really there for them. We have really felt that in our congergation in Charlotte as well as the people in the one here we are visiting.
Here is a copy of the program so you can understand what is discussed and why we feel so important for us to go to be encouraged. In reality it really was super encouraging however not the wisest thing for Elan after the fact. It wasn't so bad for him as it was for Erik and me. He feels fine after vomitting - we just have to pick it up!
FRIDAY 5
“As for Jehovah, He Sees What the Heart Is”
—1 Samuel 16:7
9:20 Music 9:30 SongNo.52andPrayer 9:40 Chairman’sAddress:
Why Must We Safeguard Our Heart? (Proverbs 4:23; Jeremiah 17:5-10)
10:10 Acquiring“anObedientHeart”—IsItPossible? (1 Kings 3:9)
10:30 DoYouHaveaBalancedViewofYourself? (Romans 12:3)
10:50 SongNo.57andAnnouncements 11:00 Symposium:BewareofDangerousHeartConditions!
“Cunning of Heart” (Proverbs 7:10) “Double Heart” (Psalm 12:2) “Halfhearted” (Psalm 119:113) “In Want of Heart” (Proverbs 7:7; 10:21)
11:40 KeynoteAddress: Let God’s Word Reveal the Intentions of Your Heart
(Hebrews 4:12; James 1:22-25) 12:10 SongNo.113andIntermission
1:50 Music 2:00 SongNo.106 2:05 QuestionsAbouttheHeartAnswered
(Deuteronomy 4:39; Philippians 1:7, 8) 2:25 AvoidTestingGodinYourHeart(Psalm78:18,19) 2:45 SoundDrama:FortifyYourHeartstoBeWitnesses
(Matthew 27:32–28:15; Luke 24:8-53) 3:15 SongNo.116andAnnouncements
Morning
AfternoonFRIDAY 6
Afternoon (continued)
3:25 Symposium:PrepareYourHeartfor... Prayer (Psalm 141:2)
Study (Ezra 7:10) Meetings (Deuteronomy 16:16) Informal Witnessing (1 Peter 3:15) Temptation (Psalm 78:8) Persecution (1 Peter 4:12-14)
4:25 DoYouHave“aHeartforWorking”?(Nehemiah4:6) 4:55 SongNo.98andClosingPrayer
SATURDAY
“Out of the Abundance of the Heart the Mouth Speaks”—Matthew 12:34
9:20 Music 9:30 SongNo.96andPrayer 9:40 Symposium:MotivateRightheartedOnestoLove...
Their Spiritual Father (Acts 13:48; 16:14)
Their Spiritual Mother (Proverbs 6:20) 10:10 Symposium:GuardYourHeartAgainst
“the Works of the Flesh” Fornication, Uncleanness, Brazen Conduct
(Galatians 5:19-21) Idolatry, Practice of Spiritism (1 John 5:21) Enmities . . . Envies (Psalm 141:3) Drunken Bouts, Revelries, and Things Like These
(2 Peter 2:2) 11:10 SongNo.68andAnnouncements
Morning
SATURDAY 7
Morning (continued)
11:20 “GodIsGreaterThanOurHearts”—How? (1 John 3:19, 20)
11:40 Baptism:GiveYourHearttoJehovah(Ephesians3:20) 12:10 SongNo.58andIntermission
1:35 Music 1:45 SongNo.67 1:50 “JehovahIsNeartoThoseThatAreBrokenatHeart”
(Psalm 34:17-20) 2:10 Symposium:‘DoJustasYouHaveResolved
in Your Heart’ Showing Generosity (2 Corinthians 9:7) Widening Out in Love (Romans 15:7) Forgiving One Another Freely (Ephesians 4:32) Remaining Faithful to Your Marriage Mate
(Malachi 2:13, 14) Reaching Out in the Congregation (1 Timothy 3:1) Living Up to Your Dedication (Daniel 1:8)
3:10 SongNo.95andAnnouncements 3:20 Full-TimeServiceHelpsSafeguardtheHeart—How?
(Psalm 45:1) 3:40 ListentoThoseWhoLoveYouFromtheHeart
(Proverbs 17:17) 4:00 RejoiceinYourYouth!(Ecclesiastes11:9–12:1) 4:20 InculcateGod’sWordinLittleHearts
(Deuteronomy 6:4-7; 31:12) 4:55 SongNo.89andClosingPrayer
Afternoon
SUNDAY 8
‘Serve Jehovah With a Complete Heart’
—1 Chronicles 28:9
9:20 Music 9:30 SongNo.110andPrayer 9:40 Symposium:ServeJehovahWithYourWholeHeart,
asDid... Hannah (1 Samuel 1:18) Samuel (1 Samuel 2:26) Abigail (1 Samuel 25:32, 33) Elijah (1 Kings 18:42) Jonah (Jonah 3:4; 4:1) Mary (Luke 1:34, 38) Martha (John 11:25-27) Peter (Proverbs 24:16)
11:00 SongNo.61andAnnouncements 11:10 PublicBibleDiscourse:
“The Former Things Will Not . . . Come Up Into the Heart” (Isaiah 65:13, 14, 17-19, 21-23)
11:40 SummaryofTheWatchtower 12:10 SongNo.134andIntermission
1:25 Music 1:35 SongNo.73 1:40 Drama:WhatIsTrueLove?
(Proverbs 22:3; 1 John 4:8) 2:45 SongNo.36andAnnouncements 2:55 NeverLetYourHeartBecomeTerrified!
(2 Chronicles 20:15, 17; 1 Peter 5:8, 9) 3:40 SongNo.49andClosingPrayer
Link to worldwide locations for one near you: http://www.jw-media.org/gbl/20120518.htm
xoxo
Tuesday, June 19, 2012
Sunday and Monday
Yesterday was such a delightful day with the boys! Erik and I decided to go back to rewarding good behavior with Finn and low and behold - it works! Boy - seeing the crazy psychiatrist about a month ago did help after all. We had kind of stopped the "i cards" which are basically cards we give to him when he does something caring, obedient or respectful. We then count them up for a reward such as a bike ride around the block (going rate 5 i cards) or a trip to the park (going rate 8 i cards) etc.
Sunday we stuck around here mostly so we could get a good amount of feedings in for Elan as well as a good nap for both boys. Elan had started looking skinnier Thurs thru Sat so we knew we had to make it a full on priority. He did well and no throwing up! Monday's appointment he hadn't lost any weight so doing great. Most kids lose a bit during radiation so good to keep him on track.
Erik also talked to Dr. Guo (the TCM Doctor) on the phone about the teas etc and was given some advise as well as cut the tea down to 1 cup a day since 3 was WAY too much. I think that is partially why he lost a bit of weight as no calories in the fluid we blend his food with. Now I will use the Hemp milk again as high in calories. We are sticking to keeping away from dairy from cows again - he had another flare up of eczema
So today (Monday) we loaded the boys up to get to the clinic by 9 AM and we had a call at 8:55 - beam down! Oh NO - expected time up was 4 hrs... this means no food or drink as 6 hrs for drinks and 8 for food before analgesia. This is day 13 I think and the first time we ran into this. So we drove Finn to camp and hung out a few minutes then drove to drop our bikes off at the local bike shop for a much needed tune up (it had been 8 years). We wasted some time there distracting Elan as much as possible. We also broke down and bought a basket for my bike so we can pack our lunch, diapers etc since we had a hard time bringing all our gear with us necessary for 2 kids away from home more than one hr with one being tube fed. Basically the bike shop received a great reward for the beam being down and we had time to waste. The woman at the counter was originally from Charlotte and lived in Dilworth. She knew our old neighborhood of Plaza Midwood and ate at Lulu's the last time she was in town (a few blocks from our Club Rd house). She is currently in school for speech pathology and so I chatted with her regarding Elan and if she thinks crazy to be doing speech for a 21 month old. Nice to get another perspective.
We finally did get him in around 11:45 so not as bad as it could have been. Once there we ran into the 26 year old Jeremy who also is getting treatment for a brain tumor. He had with him this time his roommate who was a kind guy. Jeremy and his two friends from last week we had over for dinner. We had a nice time with them! The way we met them was the non-profit who we rent our house from had a "get to know each other" dinner we were all invited to. I was actually reluctant to go but it was so therapeutic to meet other patients and supportive friends. Well Jeremy is done on Thursday so we are going out for lunch on Wed to celebrate! Nice he wanted to get together with us.
We also met a new couple who has a 2 1/2 year old daughter on her 4th day of treatment (Elan is at 13th day now). They drive back and forth as they are only 45 minutes away but they are so kind as well. He is a school teacher and she owns her own business. I mentioned that I am a rep with Pearson and guess what - his dad is in Higher ed too! Crazy!!! I will get his father's name but at one time he worked for McGraw-Hill too in Michigan.
After that we picked up Finn and then headed to Thai for lunch... been wanting to eat at one here in town with raves and both of us were starving so went since they had a lunch deal. We ran into the waiter we had with my grandparents a few days before at the Runcible Spoon - he was too cool for school if you know what I mean when we had him and this time kind of the same but asked what the occasion was for my Grandparents visit and Erik gave him the bomb... it is odd but kind of enjoyed watching this guy squirm a bit. He was still very vegan/emo about it all though. When we were leaving he got up as well as a girl with him and gave their regards. I guess I shouldn't judge :)
We then headed home for a quick nap and then headed to the "B line for a walk and Finn on his bike. Boy is Finn proud to ride his bike and really good at it! He rode at least 1 1/2 miles and went ahead of us most of the time. we then stopped at Bloomingfoods - the local coop "granola" grocery - and bought Elan's yogurt made out of goat milk. Ever since we stopped cows milk (for the second time) his eczema has cleared up again - go figure. We added everything back after Dr. Guo said too... basically I was so overwhelmed I kind of gave up his diet for a week esp after finding out how his cancer grew back so aggressively. But I guess I need to trust Dr. Fodel since she said to stay away from it and gluten with him and his eczema is worth staying away esp since so many options and we feed tube him anyway! Now much happier kid and not scratching!
I have decided after all of this that I am going to write a feeding tube cookbook for cancer with all of my free time - HA! (ok long term goals now!). I will guilt one of my nutrition professors (Hint, hint) with a PhD to add a forward or something so it so we have some credit since you know, unless they are involved some unnamed folks won't read :0. We just feel so sad we were given a 1970's black and white photo copy of fats, carbs and proteins type of deal on how to make your own kid's food or the other option of 100% chemicals in Pediasure for his entire dietary needs. I was told by the dietitian from the hospital as well as the one HERE that she doesn't recommend to anyone to make their kid's food. I asked the woman here why and she said because of educating the parents on hygiene and how to make the food etc is too much for them. I am SHOCKED that no one educates parents on proper nutrition and how to clean a cutting board - shouldn't that be 101 anyway in life??? I am just horrified it isn't at least presented as an option - hence my super awesome, cool, rad, full color, Pearson sponsored :) cookbook.
In the hospital in Charlotte I had to be super proactive about wanting real food for my kiddo to be given the caloric needs for him in this situation. I was a bit crazy I guess, because they said they only have had about 3 parents request it. I mean if the kiddos were not on a feeding tube would they be telling parents to feed their kids a diet of canned foods only? There logic was proper hygiene of cutting boards and knives was a bit ridiculous. They were totally on board with us and said they could tell we "had our acts together" but shouldn't every kid get decent nutrition? I mean really, does the fact the kid has cancer change the need for proper food vs a bunch of chemicals???? I now have my new purpose in life (ok a bit dramatic but a new goal of mine - a cookbook or "blendbook"). I only think the issue is that parents are perceived as idiots dealing with a situation. Now I do understand that parents get overwhelmed but sad that they (meaning hospitals and healthcare) don't give as an option right away and insurance doesn't cover a good blender but will for chemical food. WOW! All you need is a great blender and walla - food for the tube made of real food, not chemicals. Now wouldn't it be great if insurance paid for a good blender for say 1 time and then be done with it vs $600 a MONTH????? I am now helping the insurance companies! Every tube kid should get a VitaMix (the best blender by far by the way regardless if for mix drinks or mixed tube feedings (or both a the Miller house on the weekends now a days :)).
Sunday we stuck around here mostly so we could get a good amount of feedings in for Elan as well as a good nap for both boys. Elan had started looking skinnier Thurs thru Sat so we knew we had to make it a full on priority. He did well and no throwing up! Monday's appointment he hadn't lost any weight so doing great. Most kids lose a bit during radiation so good to keep him on track.
Erik also talked to Dr. Guo (the TCM Doctor) on the phone about the teas etc and was given some advise as well as cut the tea down to 1 cup a day since 3 was WAY too much. I think that is partially why he lost a bit of weight as no calories in the fluid we blend his food with. Now I will use the Hemp milk again as high in calories. We are sticking to keeping away from dairy from cows again - he had another flare up of eczema
So today (Monday) we loaded the boys up to get to the clinic by 9 AM and we had a call at 8:55 - beam down! Oh NO - expected time up was 4 hrs... this means no food or drink as 6 hrs for drinks and 8 for food before analgesia. This is day 13 I think and the first time we ran into this. So we drove Finn to camp and hung out a few minutes then drove to drop our bikes off at the local bike shop for a much needed tune up (it had been 8 years). We wasted some time there distracting Elan as much as possible. We also broke down and bought a basket for my bike so we can pack our lunch, diapers etc since we had a hard time bringing all our gear with us necessary for 2 kids away from home more than one hr with one being tube fed. Basically the bike shop received a great reward for the beam being down and we had time to waste. The woman at the counter was originally from Charlotte and lived in Dilworth. She knew our old neighborhood of Plaza Midwood and ate at Lulu's the last time she was in town (a few blocks from our Club Rd house). She is currently in school for speech pathology and so I chatted with her regarding Elan and if she thinks crazy to be doing speech for a 21 month old. Nice to get another perspective.
We finally did get him in around 11:45 so not as bad as it could have been. Once there we ran into the 26 year old Jeremy who also is getting treatment for a brain tumor. He had with him this time his roommate who was a kind guy. Jeremy and his two friends from last week we had over for dinner. We had a nice time with them! The way we met them was the non-profit who we rent our house from had a "get to know each other" dinner we were all invited to. I was actually reluctant to go but it was so therapeutic to meet other patients and supportive friends. Well Jeremy is done on Thursday so we are going out for lunch on Wed to celebrate! Nice he wanted to get together with us.
We also met a new couple who has a 2 1/2 year old daughter on her 4th day of treatment (Elan is at 13th day now). They drive back and forth as they are only 45 minutes away but they are so kind as well. He is a school teacher and she owns her own business. I mentioned that I am a rep with Pearson and guess what - his dad is in Higher ed too! Crazy!!! I will get his father's name but at one time he worked for McGraw-Hill too in Michigan.
After that we picked up Finn and then headed to Thai for lunch... been wanting to eat at one here in town with raves and both of us were starving so went since they had a lunch deal. We ran into the waiter we had with my grandparents a few days before at the Runcible Spoon - he was too cool for school if you know what I mean when we had him and this time kind of the same but asked what the occasion was for my Grandparents visit and Erik gave him the bomb... it is odd but kind of enjoyed watching this guy squirm a bit. He was still very vegan/emo about it all though. When we were leaving he got up as well as a girl with him and gave their regards. I guess I shouldn't judge :)
We then headed home for a quick nap and then headed to the "B line for a walk and Finn on his bike. Boy is Finn proud to ride his bike and really good at it! He rode at least 1 1/2 miles and went ahead of us most of the time. we then stopped at Bloomingfoods - the local coop "granola" grocery - and bought Elan's yogurt made out of goat milk. Ever since we stopped cows milk (for the second time) his eczema has cleared up again - go figure. We added everything back after Dr. Guo said too... basically I was so overwhelmed I kind of gave up his diet for a week esp after finding out how his cancer grew back so aggressively. But I guess I need to trust Dr. Fodel since she said to stay away from it and gluten with him and his eczema is worth staying away esp since so many options and we feed tube him anyway! Now much happier kid and not scratching!
I have decided after all of this that I am going to write a feeding tube cookbook for cancer with all of my free time - HA! (ok long term goals now!). I will guilt one of my nutrition professors (Hint, hint) with a PhD to add a forward or something so it so we have some credit since you know, unless they are involved some unnamed folks won't read :0. We just feel so sad we were given a 1970's black and white photo copy of fats, carbs and proteins type of deal on how to make your own kid's food or the other option of 100% chemicals in Pediasure for his entire dietary needs. I was told by the dietitian from the hospital as well as the one HERE that she doesn't recommend to anyone to make their kid's food. I asked the woman here why and she said because of educating the parents on hygiene and how to make the food etc is too much for them. I am SHOCKED that no one educates parents on proper nutrition and how to clean a cutting board - shouldn't that be 101 anyway in life??? I am just horrified it isn't at least presented as an option - hence my super awesome, cool, rad, full color, Pearson sponsored :) cookbook.
When we were in the hospital in Charlotte they said Pediasure for Elan once he had his tube and I asked if there was a whole food option or at least one with less chemicals and they said yes - you just have to ask for it. Well we got a full month of the "whole food" Complete brand option at our doorstep the day we came home from the hospital. I gave away to a non-profit as I was told by insurance it was free for us and not to worry about it when I called to cancel it (later billed $600! but hospice took care of helping us get that resolved as we didn't request it etc.) FIRST ingredient for my cancer child was High Fructose Corn Syrup - well I am not a MD etc but I do know that cancer thrives on sugar (even my micro profs were shocked!) so the first day out of the hospital he went 100% food what we made. I am a crazy mother now with a diet once again of kale, beets, olive oil or flax oil, veggies and berries with quinoa or brown rice, eggs, poultry, fish, avocados in every blending, sweet potatoes etc. basically what all of us SHOULD be eating. He is the walking best fed kid while poor Finn is literally getting a Lunchable tomorrow for camp as a reward (OK I put a cut up apple and grapes in his bag too).
In the hospital in Charlotte I had to be super proactive about wanting real food for my kiddo to be given the caloric needs for him in this situation. I was a bit crazy I guess, because they said they only have had about 3 parents request it. I mean if the kiddos were not on a feeding tube would they be telling parents to feed their kids a diet of canned foods only? There logic was proper hygiene of cutting boards and knives was a bit ridiculous. They were totally on board with us and said they could tell we "had our acts together" but shouldn't every kid get decent nutrition? I mean really, does the fact the kid has cancer change the need for proper food vs a bunch of chemicals???? I now have my new purpose in life (ok a bit dramatic but a new goal of mine - a cookbook or "blendbook"). I only think the issue is that parents are perceived as idiots dealing with a situation. Now I do understand that parents get overwhelmed but sad that they (meaning hospitals and healthcare) don't give as an option right away and insurance doesn't cover a good blender but will for chemical food. WOW! All you need is a great blender and walla - food for the tube made of real food, not chemicals. Now wouldn't it be great if insurance paid for a good blender for say 1 time and then be done with it vs $600 a MONTH????? I am now helping the insurance companies! Every tube kid should get a VitaMix (the best blender by far by the way regardless if for mix drinks or mixed tube feedings (or both a the Miller house on the weekends now a days :)).
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