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Posted: 12/22/2016 11:44:00 PM EDT
[#1]
Posted a slightly more detailed version of this post in the other thread as well just to keep a current account of what's going on, but wanted to update this thread.
Thank you all again for your support for him (Prayers, thoughts, and donations!). So Tues the Feed Tube and Port went well. We were on track to having my son and wife checked out this afternoon (Thur afternoon). Wed, all through they day, they tested everything they needed for a base line (EKG, Kidney function, and hearing). Went to the hospital at about 3pm and by 6:30pm it turned out he was not going to be allowed to leave. Apparently the feed tube is a MUCH bigger deal than originally thought. We were under the impression that it would be a supplemental thing to add to his normal diet if he wasn't eating enough or did not feel like eating (possible mouth soars one of the side affects). That is not the case though. So he will be getting "X" amount in the morning and "X" amount in the evening before bed every day. They want to really bulk him up for the up and coming Chemo. So tonight he didn't quite finish the required amount of formula within a given time without feeling VERY full and queasy. They are not sure if it's a volume verses duration issue of if his body doesn't like that mix of formula. So they will wait and do the same volume over a longer period of time and see if that will work. Poor kid REALLY wanted to go home and my wife was REALLY looking forward to getting some quality sleep (they both are). For now the feed tube will have a length of tube sticking out of it that attaches to a small machine that is also attached to the formula bag. They also covered the chemo schedule that will take place next week. The surgery won't happen until March. They are talking about PT pretty much the entire time leading to the surgery and obviously after. I think some of that will be at home. My son is still staying strong and focused as much as a 13yr old kid with cancer can be anyway. Very proud of him. |
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Posted: 12/23/2016 7:36:59 AM EDT
[#2]
Wife Texted at 11:30pm and I didn't see it...... They pumped him full of too much formula and water and the poor kid puked everything up.
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Posted: 12/23/2016 1:20:13 PM EDT
[#3]
Hit and bump.
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Posted: 12/23/2016 11:18:27 PM EDT
[#4]
Photobucket has to be the crappiest pic hosting site ever. My account has been jacked for 2 weeks and their tech support can only suggest that I log out and back in.
Are there any other free and good picture hosting sites that you guys recommend? |
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Posted: 12/24/2016 1:16:28 AM EDT
[#5]
Quote HistoryQuoted:
Photobucket has to be the crappiest pic hosting site ever. My account has been jacked for 2 weeks and their tech support can only suggest that I log out and back in. Are there any other free and good picture hosting sites that you guys recommend? Imgur works well for me |
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Posted: 12/24/2016 2:55:11 AM EDT
[#6]
No words, other than, be with your little man. Blessings to all. |
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Posted: 12/24/2016 9:22:35 PM EDT
[#7]
My work has been fantastic about what's going on. I take my boys with me to company get-togethers so all of my co-workers know my kids. They have given me choice on the projects we are running and that keeps me busy but also gives me a little free time. During one of my breaks I drew up some coloring pages so they can color them and frame them.
I will do more once he saves his head (little after chemo) and have them bald as well. 
Merry Christmas to everyone. Thank you again for everything. |
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Posted: 12/25/2016 3:55:43 PM EDT
[#8]
We prayed for this young man again today. Merry Christmas to you all! I hope on this day you can all forget about the trouble for awhile and enjoy your family time.
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Posted: 12/26/2016 2:12:46 AM EDT
[#9]
Gave $125. Hope that helps, OP.
Edit: Merry Christmas. Prayers to you and the family. |
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Posted: 12/26/2016 10:24:41 AM EDT
[#10]
Quote HistoryQuoted:
Gave $125. Hope that helps, OP. Edit: Merry Christmas. Prayers to you and the family. Thank you for the donation. He had a great Christmas. He had some issues with constipation, but he has a history of this so no red flags. Today he will be pounding water in prep for the chemo tomorrow. He will check in at 7am and will be there for 3 days. I am getting his room squared away today and tomorrow. We finished the wood floors (had the boxes in the garage for 3yrs), painted his room in the color of his choice (slightly grey powder blue), and we are condensing down what is in there. We will be putting one of the game systems up there (Nintendo Wii) along with a TV (my kids were not allowed to have a TV in their rooms). I will be putting a laptop and a medium size crafting table up there so he can play with his legos. It's going to be a LONG process and hopefully he will not be bored out of his mind. The school is working with the hospital and he should be receiving home-bound schooling from them. Thank you all again for the donations, thoughts, and prayers. |
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Posted: 12/27/2016 9:29:05 PM EDT
[#11]
His first round of chemo was today and we should be getting an update from my brother soon.
I hope you guys don't think this is in poor taste and I'm not looking for a free as I am wanting to buy it. Does anyone have a lightly used Wii-U and/or Playstation 4 they'd sell? My brother is going to get him a TV for his room at home and I'd like to get him some stuff to play (there is one downstairs but I'm wanting to leave it for the younger son) I'd rather buy from an Arfcom member than someone on ebay or Craigslist. |
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Posted: 12/27/2016 10:48:28 PM EDT
[#12]
Here's an abbreviated update from the other thread.
So yeah, no one busted into the room and said "Wait, stop the chemo,we were mistaken. Your son doesn't have cancer!" Watching the red colored Chemo get pumped into his Port line fell HEAVY on my wife and I both. This IS happening. My boy is starting something that is going to break him down and hopefully kill off something that would have otherwise killed him. He was out of it from nausea meds and I believe they gave him something to calm him down. My wife and I kissed on him until they came in to put the nastier chemo meds in. He woke up and we were telling him he started the chemo and we were both nervous wrecks waiting for him to "lose his shit" and freak out. Instead he smiled at us and said "I need to pee!" I gloved up and he had to piss in a hand held urinal. Probably didn't need to do it yet, but practice is practice. Picture of him from last week when a friend of my wife's sister sent a hand made Luigi blanket. 
Shot of him passed out right before first chemo was put in. 
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Posted: 12/28/2016 8:42:33 PM EDT
[#13]
Best of luck to your son. There are a surprising number of people here that have been through one form of cancer or another.
I finished chemo last month, the nausea meds often made me feel worse than the actual chemo agents, although it got harder towards the end for sure. Sounds like he has a great support team to get him through it. |
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Posted: 12/29/2016 9:28:13 AM EDT
[#14]
Hi Balloo. I'm new to the site and you were one of my first customers. Thanks Brother. You have a very fine Son I can see in the pics. You have me all choked up. I just want to tell you a couple things that might comfort you. My Grandfather had leukemia and the doctors said he had 6 months to live. He lived more than 20 years beyond that to 84 years old. Please stay positive and truly believe he's going to be okay. Miracles can and do happen. As a cancer survivor myself I know it's tough to go through. I hope and pray your Son gets his miracle. Please accept my most sincere hope and prayers that this ordeal will be over for him soon and he'll go into remission. With brotherly love for you and your family I truly wish you and yours the best things in life and a full and speedy recovery. -CB
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Posted: 12/29/2016 11:57:07 AM EDT
[#15]
Donated and shared to my FB wall.
Prayers for Caulin. I'm in Centex and have a 12yr old at home. So even though I do not know the family this hits pretty close to home. I can't imagine the stress the family is going through and am hoping for the best. |
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Posted: 12/29/2016 11:52:41 PM EDT
[#16]
Thank you all again for everything you all are doing. It is VERY encouraging hearing from the survivors here.
The Day 2 Chemo (repeat of Day 1 Chemo) hit him much harder last night. He had some vomiting but was able to still rest. He was supposed to be checked out today (Thursday) but the vomiting got worse and they wouldn't release him. My wife said the routine is that he sits up to get ready to pee, starts to hick-up, and BAM vomit. He is still not really giving her a heads up so she is quick with the bucket or bag. They are monitoring him and keeping fluids in him. The "Plan" is that he will be able to hold down some liquid before he can be released. They are using the feed tube but in MUCH smaller volumes, and the vomiting is happening pretty far apart so hopefully this means he is still getting some or most of it digested. |
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Posted: 12/30/2016 10:41:37 AM EDT
[#17]
Average donation is $87, seems like a good omen.
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Posted: 12/30/2016 7:13:49 PM EDT
[#18]
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Posted: 12/30/2016 7:32:42 PM EDT
[#19]
You are all in my prayers.
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Posted: 12/30/2016 8:12:54 PM EDT
[#20]
Quote HistoryQuoted:
Our parents went and had some t-shirts made in Caulin's favorite color. I love them. Here is my brother and his wife. |
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Posted: 1/1/2017 12:19:48 AM EDT
[#22]
This kind of shit kills me. I always have a hard time opening threads like this.
They just hurt my soul. As a father, man, they always hit home and I see my kids in the OP's... Prayers out along with a donation in a few days here. Get paid this week. May God bless you and your family during this difficult time. 
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Posted: 1/1/2017 12:31:24 AM EDT
[#23]
Quote HistoryQuoted:
Tonight was AWESOME! Caulin LOVES sparklers and it's that time of year so........ we got approval from Dell to all go into the courtyard wearing our #CaulinStrong shirts and we lit off about 100 sparklers while he watched from his room window on the 4th floor. He loved it. He was supposed to come home 3 days ago but his Kidney levels are too high so they aren't being flushed of the chemo as well as the Doctors would like. So, unfortunately, he is still at Dell Childrens. I was wearing a mask as I am having BAD cedar allergies and don't want to contaminate his room with a sneeze or cough. |
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Posted: 1/1/2017 3:47:00 PM EDT
[#24]
Well the numbers are STILL not wear they want them to be. He is staying yet another night. I am not even planning on when he will be home, just going to let it happen when it happens.
Good news is his kidneys "look" good and are functioning. He is in GREAT spirits. The first 2 days after the 2 chemo sessions he just slept most of the time. He'd be awake and active for a little, then he'd get queezyg and they'd hit him with meds and he'd sleep. Last night he was wide awake for several hours. Talking engaging in conversation. His Thomas the Tank Engine came in from Japan and he got a HUGE kick out of that. Thank you guys again. 1st round of bills are starting to come in and the donations are putting a HUGE dent in them. My credit card would be white hot if not for you all helping us out. I am truly blessed to be a part of this message board. |
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Posted: 1/1/2017 4:40:40 PM EDT
[#25]
Quote HistoryQuoted:
Well the numbers are STILL not wear they want them to be. He is staying yet another night. I am not even planning on when he will be home, just going to let it happen when it happens. Good news is his kidneys "look" good and are functioning. He is in GREAT spirits. The first 2 days after the 2 chemo sessions he just slept most of the time. He'd be awake and active for a little, then he'd get queezyg and they'd hit him with meds and he'd sleep. Last night he was wide awake for several hours. Talking engaging in conversation. His Thomas the Tank Engine came in from Japan and he got a HUGE kick out of that. Thank you guys again. 1st round of bills are starting to come in and the donations are putting a HUGE dent in them. My credit card would be white hot if not for you all helping us out. I am truly blessed to be a part of this message board. we are family here..we look after our own. |
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Posted: 1/1/2017 5:51:47 PM EDT
[#26]
Quote HistoryQuoted:
Tonight was AWESOME! Caulin LOVES sparklers and it's that time of year so........ we got approval from Dell to all go into the courtyard wearing our #CaulinStrong shirts and we lit off about 100 sparklers while he watched from his room window on the 4th floor. He loved it. He was supposed to come home 3 days ago but his Kidney levels are too high so they aren't being flushed of the chemo as well as the Doctors would like. So, unfortunately, he is still at Dell Childrens. I was wearing a mask as I am having BAD cedar allergies and don't want to contaminate his room with a sneeze or cough. Thanks for the update man. He looks a lot better than I would - both physically and attitude - after a round of chemo. A close friend of ours was diagnosed with a potentially fast-moving and rare cancer a couple weeks ago. She had surgery on Tuesday. Pathology came back looking much better than anticipated and her surgery should/may be the end of the treatment for her. I hope Caulin has a happy surprise like that in his near future. Thoughts and prayers out for y'all! |
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Posted: 1/2/2017 8:55:07 PM EDT
[#27]
He finally got to come home this afternoon. His levels finally went below the target and they released him. Poor kiddo, he has to do this many many more times
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Posted: 1/2/2017 9:53:11 PM EDT
[#28]
Quote HistoryQuoted:
He finally got to come home this afternoon. His levels finally went below the target and they released him. Poor kiddo, he has to do this many many more times Yes! He is finally home. His 3 day two night stay turned into seven day, 6 night stay! He is still not eating very much, and if he shocks his stomach he vomits (ie drank too much water too quickly). We will be using the feed tube and the Joey (auto food dispenser) for over night. His room is 99.5% done, but my wife wants him downstairs so he can easily hit the can and she or I can sleep down there with him. He has an appt tomorrow and they will do some labs again when there. You all will get tired of me saying this, but it has to be said, Thank You all again for everything. |
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Posted: 1/2/2017 10:22:27 PM EDT
[#29]
Quote HistoryQuoted:
Yes! He is finally home. His 3 day two night stay turned into seven day, 6 night stay! He is still not eating very much, and if he shocks his stomach he vomits (ie drank too much water too quickly). We will be using the feed tube and the Joey (auto food dispenser) for over night. His room is 99.5% done, but my wife wants him downstairs so he can easily hit the can and she or I can sleep down there with him. He has an appt tomorrow and they will do some labs again when there. You all will get tired of me saying this, but it has to be said, Thank You all again for everything. |
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Posted: 1/4/2017 10:13:12 AM EDT
[#30]
Prayers inbound brother!
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Posted: 1/6/2017 6:00:55 PM EDT
[#31]
My wife took Caulin in today for the 2nd appt for this week. His ANC number was 500 (the target number they wanted) on Tue, and now Fri it's 90!! Doc gave him a shot to boost his immune system and we talked to the Oncology nutritionist about how his body is not tolerating the higher volumes of formula. Talk about a fluster cluck!
My son has always has a mild allergy to milk. We have been using lactose free milk ever since (early on he would throw it up...sound familiar huh). So she said WTH?! and we are now changing to a non lactose formula. So my living room has cases and cases of this useless formula. Doomsday prep trade bait!!! We will probably donate it to Dells Childrens in the hopes that someone can use it. So once again it feels like a giant step backwards. Trying to find the silver lining in it and are focusing on the fact that hopefully he will hold the new stuff down and fatten up proper! Good news is that his appetite is back and he is tolerating normal food a LOT better. |
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Posted: 1/7/2017 12:22:49 AM EDT
[#32]
Prayers and a little $ sent. Stay strong and keep inspiring all of us.
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Posted: 1/7/2017 11:18:07 AM EDT
[#33]
Quote HistoryQuoted:
My wife took Caulin in today for the 2nd appt for this week. His ANC number was 500 (the target number they wanted) on Tue, and now Fri it's 90!! Doc gave him a shot to boost his immune system and we talked to the Oncology nutritionist about how his body is not tolerating the higher volumes of formula. Talk about a fluster cluck! My son has always has a mild allergy to milk. We have been using lactose free milk ever since (early on he would throw it up...sound familiar huh). So she said WTH?! and we are now changing to a non lactose formula. So my living room has cases and cases of this useless formula. Doomsday prep trade bait!!! We will probably donate it to Dells Childrens in the hopes that someone can use it. So once again it feels like a giant step backwards. Trying to find the silver lining in it and are focusing on the fact that hopefully he will hold the new stuff down and fatten up proper! Good news is that his appetite is back and he is tolerating normal food a LOT better. Yikes. Glad you guys figured it out. If Dell's can't use the formula please shoot me info on the formula and I'll ask if Shriner's Children's can use it. |
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Posted: 1/7/2017 5:30:23 PM EDT
[#34]
Quote HistoryQuoted:
Yikes. Glad you guys figured it out. If Dell's can't use the formula please shoot me info on the formula and I'll ask if Shriner's Children's can use it. Will do. |
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Posted: 1/9/2017 1:49:27 PM EDT
[#35]
Quote HistoryQuoted:
His first round of chemo was today and we should be getting an update from my brother soon. I hope you guys don't think this is in poor taste and I'm not looking for a free as I am wanting to buy it. Does anyone have a lightly used Wii-U and/or Playstation 4 they'd sell? My brother is going to get him a TV for his room at home and I'd like to get him some stuff to play (there is one downstairs but I'm wanting to leave it for the younger son) I'd rather buy from an Arfcom member than someone on ebay or Craigslist. Are you still looking for a system? I have a PS3, with (mostly sports) games I'd send you. Email me if you do... 13pardi at gmail. ETA, not one you specified, just throwing it out there. Got caught up with what's going on, my thoughts are there, prayers incoming.. |
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Posted: 1/9/2017 7:14:57 PM EDT
[#36]
Is there any way to donate via PayPal?
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Posted: 1/10/2017 12:29:49 AM EDT
[#37]
Quote HistoryQuoted:
Is there any way to donate via PayPal? Absolutely. It's [email protected] and THANK Y'ALL! Caulin started losing his hair today so my brother went ahead and buzzed it for him. My father and I already shaved ours.
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Posted: 1/10/2017 10:21:38 AM EDT
[#38]
Yeah his hair started to really come out yesterday. He was not happy.
I told him it would happen but I think he hoped I was full of it. Zero guarded my oldest and youngest. I already shave mine so now all the men in my house are shaved! We are at oncologist to get his numbers. Tomorrow we see the surgen for follow up on feed tube and port. Port is fine and it looks like the feed tube is good as well. His weight is much better in that he lost only a few ounces but has only been on the "new" formula for a couple of days. |
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Posted: 1/10/2017 7:05:05 PM EDT
[#39]
balloo, I normally shave my head twice a week, so it's not a big deal for me to do it- but tonight when I break out the BIC I'll be thinking of your boy and your whole family. It's cool of everyone to shave their hair in support of him.
Fuck cancer. Kick cancer's ass, Caulin. |
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Posted: 1/13/2017 12:30:50 PM EDT
[#40]
I shaved my father's head (Caulin's Grandpa) 2 nights ago and Caulin loves it. I am going to shave mine this weekend as well. I normally buzz it but this time I will razor shave it for the first time in 20 years.
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Posted: 1/13/2017 7:27:28 PM EDT
[#41]
He went in this morning and his counts went from 60 to nearly 1000! He also gained 2 lbs
.... that's a HUGE deal. Tues he starts round 2 of 1st cycle of chemo. Thank you all again for everything. |
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Posted: 1/13/2017 7:56:58 PM EDT
[#42]
Tell him the hair will grow back. I let my 5 year old shave my head at first, and when it really came out I rode a Mohawk until it fell out the rest of the way.
I met a kid last year with osteosarcoma of the proximal humerus. He had his proximal humerus resected and his clavicle rotated down to form a sort of shoulder. He is playing soccer competitively in high school and honestly, even as a physician, I had a hard time noticing he had anything done just walking him walk about. |
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Posted: 1/13/2017 7:57:17 PM EDT
[#43]
Double tap
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Posted: 1/13/2017 10:25:02 PM EDT
[#44]
Quote HistoryQuoted:
He went in this morning and his counts went from 60 to nearly 1000! He also gained 2 lbs .... that's a HUGE deal. Tues he started round 2 of 1st cycle of chemo. Thank you all again for everything. |
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Posted: 1/14/2017 2:37:36 AM EDT
[#45]
Quote HistoryQuoted:
He went in this morning and his counts went from 60 to nearly 1000! He also gained 2 lbs .... that's a HUGE deal. Tues he starts round 2 of 1st cycle of chemo. Thank you all again for everything. Good to hear! |
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Posted: 1/18/2017 7:03:24 AM EDT
[#46]
Just want to check in and let you know Arf is still thinking of Callum and your family.
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Posted: 1/18/2017 9:28:39 AM EDT
[#47]
Quote HistoryQuoted:
Just want to check in and let you know Arf is still thinking of Callum and your family. |
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Posted: 1/18/2017 4:50:40 PM EDT
[#48]
So round 2 of cycle 1 started up yesterday.
He had some vomiting this morning, but his head is in a better place than last time and he is doing whatever he needs to do to get home quicker this time! I believe he gets 1 week to recover then another round of the same followed by another 1-2 weeks before cycle 2 starts (a complete repeat of Cycle1). This poor kid is getting put through the ringer but his attitude is still positive and he knows this is a long fight. I need o get a pic of him wearing the hat that (member here) Jestertoo's wife made him. He has been wearing it the last couple of days. Here he is when we first checked in and they confirmed his numbers before Chemo (a little over 4000!!!). 
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Posted: 1/19/2017 9:27:33 AM EDT
[#49]
Wife sent pic that was taken right before the trip to start the second round of cycle1. Jestertoo's wife's handy work!
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Posted: 1/19/2017 9:30:19 AM EDT
[#50]
Quote HistoryQuoted:
Wife sent pic that was taken right before the trip to start the second round of cycle1. Jestertoo's wife's handy work! http://i1319.photobucket.com/albums/t677/balloo933/IMG_0871201_zpscmxatodx.jpg?t=1484745897 
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