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Posted: 3/16/2017 10:34:14 AM EDT
[#1]
Just wanted to send prayers and thoughts your way
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Posted: 3/20/2017 10:15:43 AM EDT
[#2]
Surgery went well and recovery is doing well so far. Finally got the pics from my Dad of the leg the next day when they removed all the extra bandages. Looks like he will have some cool scars
Here's a pic with him and the surgeon with his "WTF" just happened smile 
He's not quite hopping around yet, but he is a little mobile (when forced to be) LOL. |
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Posted: 3/21/2017 5:43:06 PM EDT
[#3]
Thanks for the update. What a trooper!
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Posted: 3/22/2017 3:18:34 PM EDT
[#4]
He goes in Fri to have the staples removed. I'm sure he will freak out when he sees the leg once the staples are out.
Doc told me Tues that his numbers were very good and next Tue we go in for numbers again and if high, Chemo will start. We are getting mixed signals with this though. We were initially told 1 week in hospital and 2 weeks recovery. My guess is Fri the surgeon will make teh call if teh leg has healed enough for the start of Cycle 3 of chemo. For now we are just trying to keep him hydrated and eating. |
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Posted: 3/24/2017 6:44:14 PM EDT
[#5]
Not so great news today. Doc was wanting to see 95% of the tumor on the femur dead. Results were 89% dead. So the Chemo is not as effective as they had hoped. Not TERRIBLE news, but a bummer.
According to doc the treatment plan will stay the same, just expecting to find it in his lungs now. Looks like the road just got longer. The news crushed my wife. I am keeping it together and she is not letting him know how freaked out she is. All we can do is keep on fighting and deal with things as they happen. |
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Posted: 3/24/2017 9:24:14 PM EDT
[#6]
Quote HistoryQuoted:
Not so great news today. Doc was wanting to see 95% of the tumor on the femur dead. Results were 89% dead. So the Chemo is not as effective as they had hoped. Not TERRIBLE news, but a bummer. According to doc the treatment plan will stay the same, just expecting to find it in his lungs now. Looks like the road just got longer. The news crushed my wife. I am keeping it together and she is not letting him know how freaked out she is. All we can do is keep on fighting and deal with things as they happen. |
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Posted: 3/25/2017 9:35:46 AM EDT
[#7]
I've got a scar very much like his. It is badass.
 . It looked way cool when they took the stitches out!
Here's to hoping we can start seeing some better numbers. We're still here for him. |
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Posted: 3/25/2017 4:47:07 PM EDT
[#8]
Quote HistoryQuoted:
When he came out of surgery he wanted mom. Love this pic http://i24.photobucket.com/albums/c48/austinbelair/FB_IMG_1482258332275_zpsm8ussfph.jpg Donation made and prayers inbound. |
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Posted: 3/27/2017 11:40:48 PM EDT
[#9]
I just sent my prayers up for your son.
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Posted: 3/28/2017 8:19:09 AM EDT
[#10]
This kid inspires me. He went off the regimented (1/2 tab) Oxy last Fri and had only had 2 over the last 3 days (verses every 4hrs). I forgot to take pics, but he was happy to see his hair growing back after only 2 weeks. I was a little bummed he was going to lose it all again very soon.
He goes in today, and if his numbers are good, he starts the 3rd cycle of chemo. We are focusing on the fact that 89% of the cancer being dead is a good thing. My wife and I are aware of what that means though, and big picture we know this battle will continue on. Our goal is to keep him positive and focusing on getting better. If it goes to his lungs, then we will refocus and handle that when it happens. Thank you all for everything. |
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Posted: 3/29/2017 1:58:06 PM EDT
[#11]
You and Caulin remain in my prayers.
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Posted: 3/30/2017 12:57:18 AM EDT
[#12]
The Cisplatin hit him HARD Wed morning. he was vomiting for about 4hrs until they tried something different to try and it worked. So apparently there is a nation wide shortage of Phenergan in IV form. Pretty nasty headache as well and that probably made the nausea worse.
Once he settled in he just wanted darkness and quite. My youngest and I left him and wife to nap (wife didn't nap). Talked to the other Oncologist that works with my sons and he gave us a odd since of hope about the whole diagnosis. It will be the same deal, we will wait and chest scan every 3 months. If a nodule is found they will remove it surgically, he will get more Chemo and we will continue to monitor chest for.... however many years it takes. My boy is happy in a way because he knows the chemo is almost over. We have mentioned he might need more later on, but we are more focused on ending this routine and trying to give him back some normalcy. 
Thank you all again for the prayers, thoughts, and donations. |
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Posted: 4/1/2017 1:45:47 AM EDT
[#13]
I think the 2weeks of no chemo kinda messed with him. Even though the 1st week was spent recovering from surgery, it was still a break from the misery of chemo.
He wants to go home in a BAD way. We are keeping him focused and they are doing everything they can to keep his nausea in check and comfortable. My folks have been watching my youngest while I am working (I work a graveyard shift). They all went up and visited him tonight and even having his brother there didn't help his mood much. He "should" be going home Sun. they will be hooking up a new port and he will be on IV fluids at home. This is the method that worked best for the post Methotrexate, so we are hoping it will be just as effective on the Cisiplaten. My Dad took this one of my son with his brother and my wife. He's just in a bit of a funk. He should perk up once he's home. 
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Posted: 4/2/2017 12:55:54 PM EDT
[#14]
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Posted: 4/2/2017 4:57:16 PM EDT
[#15]
Quote HistoryQuoted:
https://www.AR15.Com/media/mediaFiles/130996/FB-IMG-1491151983905-179406.JPG My mom and Caulin. Two cancer warriors. 
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Posted: 4/2/2017 5:23:38 PM EDT
[#16]
Dusty pic, man. Sorry the news wasn't everything y'all were hoping for. You're still in my thoughts and prayers.
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Posted: 4/2/2017 5:29:31 PM EDT
[#17]
Hope your boy got to come home today.
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Posted: 4/2/2017 5:34:58 PM EDT
[#18]
Sorry Balloo. I know how he feels. I was wiped out at the end of my chemo and could barely keep it together. It's a shitty time but he will get over it.
Tell him to keep his head up, he will make it. |
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Posted: 4/2/2017 11:11:47 PM EDT
[#19]
I don't cry often but that pic years me whenever I look at it. I hate that this little boy is going through this. I just hate it.
Caulin is home and resting. He's very happy to be home. My brother is wiped out so no update from him just yet. |
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Posted: 4/3/2017 1:06:30 PM EDT
[#20]
Will pray for you guys OP, this stuff is heartbreaking.
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Posted: 4/4/2017 9:36:12 PM EDT
[#21]
I've been your friend on FB for some time, so I have been following the story. What a sweet kid you have...You guys are in my prayers daily!!!!
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Posted: 4/5/2017 5:38:56 AM EDT
[#22]
IM me OP, I'll send you a free 25g bottle of DCA (dichloroacetate).
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Posted: 4/5/2017 7:27:06 PM EDT
[#23]
This round of cicplatin has been ROUGH on him. Sun wasn't so bad and Mon wasn't terrible, but he didn't have much of an apatite and he was puky toward the end of the day. Tue has pretty bad. he kept thinking about puking and then BAM it would happen.
We were able to get one IV done on Mon, but Tue night we had issues with air in the lines and we were freaked out. Same thing happened today, but the med supply place sent a nurse over and he showed us a different way of doing it that was MUCH more effective. Tue night/Wed morning was pure misery. Had to take him off the IV due to above mentioned air bubbles and he had to be taken off the feed because he kept puking. I think a lot of it was in his head. I started "talking him down" and calming him at around 10pm and every couple of hours he'd wake up and I'd go in and do the same. Slow breathing and staying calm, talking to him about Thomas trains or Super mario bros trivia. He finally settle down and passed out at around 1am and slept till 7am. Then we had feed tube issues and that caused a 1st class panic. I finally calmed the wife down and treated it like a mechanical issue and resolved it. Nurse came over and squared us away on the IV and now he's wanting strawberries. LOL. Hopefully he will rest tonight. I am going in on my graveyard shift late to make sure everything is smoothed out. Wife and kiddo are wiped out (I'm getting there, but I spend about 80% of my life tired so it's business as usual for me). Thank you all again for everything. |
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Posted: 4/5/2017 7:28:28 PM EDT
[#24]
Quote HistoryQuoted:
IM me OP, I'll send you a free 25g bottle of DCA (dichloroacetate). |
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Posted: 4/5/2017 9:31:53 PM EDT
[#25]
Quote HistoryQuoted:
This round of cicplatin has been ROUGH on him. Sun wasn't so bad and Mon wasn't terrible, but he didn't have much of an apatite and he was puky toward the end of the day. Tue has pretty bad. he kept thinking about puking and then BAM it would happen. We were able to get one IV done on Mon, but Tue night we had issues with air in the lines and we were freaked out. Same thing happened today, but the med supply place sent a nurse over and he showed us a different way of doing it that was MUCH more effective. Tue night/Wed morning was pure misery. Had to take him off the IV due to above mentioned air bubbles and he had to be taken off the feed because he kept puking. I think a lot of it was in his head. I started "talking him down" and calming him at around 10pm and every couple of hours he'd wake up and I'd go in and do the same. Slow breathing and staying calm, talking to him about Thomas trains or Super mario bros trivia. He finally settle down and passed out at around 1am and slept till 7am. Then we had feed tube issues and that caused a 1st class panic. I finally calmed the wife down and treated it like a mechanical issue and resolved it. Nurse came over and squared us away on the IV and now he's wanting strawberries. LOL. Hopefully he will rest tonight. I am going in on my graveyard shift late to make sure everything is smoothed out. Wife and kiddo are wiped out (I'm getting there, but I spend about 80% of my life tired so it's business as usual for me). Thank you all again for everything. I took 3 months off dealing with my daughter. I was still exhausted. I can't imagine keeping on working. |
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Posted: 4/6/2017 12:41:12 PM EDT
[#26]
I'm so sorry that you all are having to go through this, especially him. I have three boys, and I cannot even imagine what it must be like. I hope all of this is in the past as soon as possible.
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Posted: 4/8/2017 3:41:24 AM EDT
[#27]
This week has been a blur. I actually mean it, I blink and hours have flown by. My wife took him back to see ono logistics office because he puked in the morning. To me he sounded congested and he also had a temp of 100. They took blood and said he was hydrated but hemagloben was low.
His immune system was pretty low. Once the blood came in for transfusion they took vitals and his temp was 102. So he was admitted. My folks and I dragged all the "go bags" and went to see him. He looked tired but was active. Wife insisted on chest X rays and doc said okay. I think they were thinking namonua. I wheeled him down and got them done. Once he was settled in and comfortable I went to work. As I was headed there wife said fever was at 103. Fuuuuuuuuuuuuuuuu His temp dropped that night but they wanted to try to figure it out before sending home or at LEAST have him stable. Thur was uneventful, but wanted more time. Fri was also stable. No word on why his temp jumped. They agree with me that the puking could be psychosomatic so they will but him on something stronger than adavan. He will probably be home tomorrow though. Wife had video on facebook and he seemed to be in pretty good spirits. That's all for now. Thanks again for the support, prayers, thoughts. And donations. |
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Posted: 4/8/2017 5:30:31 PM EDT
[#28]
Can someone do us a huge favor for Caulin? All he has been talking about lately is wanting a Nintendo switch but I have tried and tried and tried again to buy one locally and online and I am having zero luck. Is there anyone on here that has a connection at a toy store or Walmart, Amazon etcetera that can get us an allotment for one?
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Posted: 4/8/2017 9:20:46 PM EDT
[#29]
Quote HistoryQuoted:
Can someone do us a huge favor for Caulin? All he has been talking about lately is wanting a Nintendo switch but I have tried and tried and tried again to buy one locally and online and I am having zero luck. Is there anyone on here that has a connection at a toy store or Walmart, Amazon etcetera that can get us an allotment for one? |
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Posted: 4/8/2017 11:53:31 PM EDT
[#30]
Quote HistoryQuoted:
Can someone do us a huge favor for Caulin? All he has been talking about lately is wanting a Nintendo switch but I have tried and tried and tried again to buy one locally and online and I am having zero luck. Is there anyone on here that has a connection at a toy store or Walmart, Amazon etcetera that can get us an allotment for one? |
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Posted: 4/10/2017 12:39:02 PM EDT
[#31]
He got home late Sat. So far so good. He's taking antiboitics, but they don't know for sure what caused the fever.
He's off the IV, eating, and over all he is feeling good. Make A Wish came by Sun and they stayed for 2.5hrs. He wants to go to Japan to visit the Fox sanctuaries, Nintendo, and Lego land in Tokyo. Not sure how much of it will happen, but it gives him something to look forward to. Looks like he gets another week off this week. I thought for sure he had to go in for methotrexate, but wife says that's not till next week. Feels almost like things are back to normal. |
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Posted: 4/10/2017 12:58:54 PM EDT
[#32]
Balloo, I just saw this thread about your son. I'm in a very similar situation with my 2 year old daughter, Emily. She was diagnosed with ALL (acute lymphoblastic leukemia) back in June.
It's been a tough road, but she has been a warrior through all of it. We have been blessed that the road has been smooth and she has been in remission since Sept. She is in her final stage of treatment which will last through August of 2018. Since I first saw this last night, you guys have been at the front of my mind. Cancer sucks and it's something else when it's your own baby. It was especially hard on my wife. But I accepted that I had to stay positive throughout all of it. I knew there was nothing I could do except listen to the doctors and stay as strong and supportive as I could for my daughter and wife. For me, there was only one outcome.  Emily is going to kick cancers ass and nothing short. So far, she has been doing just that. You have to keep your head up and be strong for you son. (which, it sounds like he is one tough little dude) If there is anything I can do to help, please let me know. Also, we would love to send him a care package of the sorts. I'll shoot you a message shortly if that's ok with you.
Stay strong brother. Please give your son a hug from the 'slowmethinks' family. If it were possible, I know my little girl would happily give Caulin a hug! |
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Posted: 4/10/2017 1:41:46 PM EDT
[#33]
Quote HistoryQuoted:
Can someone do us a huge favor for Caulin? All he has been talking about lately is wanting a Nintendo switch but I have tried and tried and tried again to buy one locally and online and I am having zero luck. Is there anyone on here that has a connection at a toy store or Walmart, Amazon etcetera that can get us an allotment for one? |
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Posted: 4/11/2017 3:58:54 PM EDT
[#34]
Quote HistoryQuoted:
Balloo, I just saw this thread about your son. I'm in a very similar situation with my 2 year old daughter, Emily. She was diagnosed with ALL (acute lymphoblastic leukemia) back in June. It's been a tough road, but she has been a warrior through all of it. We have been blessed that the road has been smooth and she has been in remission since Sept. She is in her final stage of treatment which will last through August of 2018. Since I first saw this last night, you guys have been at the front of my mind. Cancer sucks and it's something else when it's your own baby. It was especially hard on my wife. But I accepted that I had to stay positive throughout all of it. I knew there was nothing I could do except listen to the doctors and stay as strong and supportive as I could for my daughter and wife. For me, there was only one outcome. Emily is going to kick cancers ass and nothing short. So far, she has been doing just that. You have to keep your head up and be strong for you son. (which, it sounds like he is one tough little dude) If there is anything I can do to help, please let me know. Also, we would love to send him a care package of the sorts. I'll shoot you a message shortly if that's ok with you.
Stay strong brother. Please give your son a hug from the 'slowmethinks' family. If it were possible, I know my little girl would happily give Caulin a hug! |
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Posted: 4/11/2017 4:03:57 PM EDT
[#35]
We went in today for labs. I thought he was due for chemo, but not this week.
He gained 2 lbs from his last visit last week. He's been eating but not huge amounts. It is steady though, and that's better than nothing. Counts were low, as expected, so they gave him hemagloben and platelets. We have been here since 8:30am and we will probably go home at 3:30pm. He is super happy no chemo! Thank you all again for everything. |
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Posted: 4/12/2017 9:44:24 PM EDT
[#36]
That's great news.
I can only imagine what you all have been through. Keeping you all in our prayers. |
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Posted: 4/12/2017 9:58:40 PM EDT
[#37]
Continued prayers your way man!
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Posted: 4/18/2017 11:04:50 AM EDT
[#38]
His counts are good so the methotrexate starts today. He will be in for approx 6 days and then home again for a day or two, then back for the second run of methotrexate.
That ends his 3rd cycle. He will start the 4th and final cycle a week after. He should be done by 2nd week of June. They will monitor his chest Xrays probably once a month. We are hoping that it won't go to his lungs, but the odds are pretty good it will. That means many more years and surgeries.... we will cross that bridge when we get there though. For now it's fight fight fight!!! Thanks again you all for everything. |
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Posted: 4/22/2017 3:29:51 AM EDT
[#39]
So this time they used something new. A drug called ZypreXa. It sedates the crap out of him, but zero vomiting. As in no vomiting at all!
Downside is he sleeps all day and doesn't eat. They are doing small feeds and LOTS of IV fluids. Poor kid is so out of it he has has little accidents all week (pissed himself a little). Compared to the gut wrenching vomiting though, that's nothing. I didn't want to jinx it by saying anything. Sad how I am reduced to thinking childish things like that. So good news! Thank you all for the thoughts, prayers, and donations. |
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Posted: 4/24/2017 4:20:22 PM EDT
[#40]
Well the methotrexate number didn't go down till this morning. He had some nausea this morning so...... he won't be going home and the second round of methotrexate starts tomorrow.
Sucks, but at least everything is already here. I stayed with him overnight last night and will stay another. It was up to him and he wanted to give his mom a break so he said I could stay another night. Lol. Docs are still concerned with his weight, but they have come to realize the same thing we do.. if he doesn't feel like eating he doesn't eat. The volume of formula is about the max he can tolerate. Just trying to carb load him tonight with his favorite pasta. |
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Posted: 4/24/2017 10:37:49 PM EDT
[#41]
Thank you for the continued updates. He's in my prayers daily, FWIW.
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Posted: 4/25/2017 6:46:47 AM EDT
[#42]
Quote HistoryQuoted:
Thank you for the continued updates. He's in my prayers daily, FWIW. |
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Posted: 4/25/2017 6:56:00 AM EDT
[#43]
Haven't heard back from nurse about blood draw about an hour ago. I talked to the Onc Doc that is here this week and he know my son's case, he wants to go balls out and get the second batch of methotrexate started today.
He was up at 4am, and has been feeling a little nausous, but no vomitting and once the Zofran kicks in he is almost back to his old self. Kid won't really eat, but he snacks quite a bit on bland foods (his choice). After this,he goes right in to the Cisplaten for the last time and then 2 weeks off and then 2 weeksofmore Metho and then we wait... all the while hoping for the best. Thanks again you all, he appreciates it. |
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Posted: 4/25/2017 7:10:07 AM EDT
[#44]
Continued prayers for Caulin and all of you guys, and also for SloMeThinks' little girl and family.
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Posted: 4/26/2017 5:30:29 AM EDT
[#45]
Glad to hear he's slogging through the chemo. The last weeks are the best and the worst, you feel like shit but you know you're getting close to being done.
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Posted: 4/29/2017 2:48:56 AM EDT
[#46]
Here is a picture from earlier in the week after the second methotrexate. He was in pretty good spirits. Wife said after the second days treatment he has pretty much slept and when awake he has been asking for different stuff to do like painting and arts and crafts.
Poor kid has been in the hospital for nearly 2 weeks straight now. 
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Posted: 5/3/2017 2:45:17 PM EDT
[#47]
So his weight has been an ongoing issue. The Doctors have finally decided that maybe they should be doing a little more to get his weight up. So he went in and he now has a dual port button with one being a G tube (stomach) and the other being a J tube (his intestine). So the G tube will get fluids like water, pedialite, or gatorade. The G tube will get a different type of formula that has been broken down even more on a cellular level.
He went in today and they did the install and were able to use the same hole so the surgery went very quickly and very easily. He is tolerating the Cisplaten fairly well with no puking so far. He gets his second dose of it today at 4-5pm. We gave him the Nintendo Switch that a Arfcommer helped us secure. That fantastic bastard gave him a hat as well! He has asked to not be named, but my son know who it is and is flabbergasted that so many people care about what happens to him and are rooting him on. Thank you all again. My folks bought him the new Legand of Zelda game and he has been playing it all day! 
Here is a pic from yesterday a couple of hours after the Chemo was done. 
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Posted: 5/3/2017 2:48:15 PM EDT
[#48]
Very glad to hear things are going smoothly.
Do you guys need any more help? Shoot me an IM if so. I've got a few ideas kicking around the ol' noggin. |
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Posted: 5/5/2017 1:58:20 AM EDT
[#49]
He has been doing really well this treatment. The J tube has been doing it's job and his nausea has been held at bay. They are talking about letting him leave today (Fri afternoon). The floor had visitors today. "May the 4th be with you" theme.
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Posted: 5/5/2017 2:17:11 AM EDT
[#50]
Thank you for the updates. I am so glad your son seems to be doing better. Those Star Wars characters must have put a smile on his face.
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