We got to the hospital today at 1 and started his treatment at 3:40. They had given him some Benadryl prior to the infusion to try to control any kind of allergic reaction. It made him really, really tired. He was actually out cold for most of the procedure. The great news is he didn't have any bad reactions. No fever, blood pressure, rash, lung or pain problems. He was able to have the entire infusion in just under 3 hours. He had to be monitored for an hour afterwards too. After they took his IV out (which he posted a picture of this on Instagram), he got his shoes on, went to the bathroom & asked if we could go to Five Guys for dinner. Needless to say, we got the car & headed to Hyde Park so he could dive into a bacon cheeseburger.
So, here's where we are at right now. He has to have another treatment at 4p on the 25th and a third one the day after Thanksgiving. At some point they are going to start to taper him off of his steroids and do an MRI to evaluate his inflammation. All of this, while stressful & scary, isn't on my radar at this very moment. Having him home in his own bed, knowing he's headed to school tomorrow & to a soccer field on Saturday is giving me a huge sense of peace & relief.
Even though things at this very moment are good, please try to continue to keep our "biggest-little man" in your prayers. We'll keep you posted over the next couple weeks with his progress.
xo
Thursday, October 11, 2012
In progress
We are at Children's right now. They didn't start giving him the Remicaid until 3:40. Looks like we are going to be here for awhile. So far he's responding fine. He's actually sleeping right now. I think this stinking Reds game has kept him energized. Keep the good energy & prayers coming....and send some to our Redlegs too!
Wednesday, October 10, 2012
tomorrow
Talk about a busy week over here. Monday we got confirmation that our insurance is going to cover Josh's Remicaid treatments. Yeah for us! Thankfully, there won't be any for sale signs at 405 Yale in the near future. Monday was also Zach's 11th birthday. I think he had a good day having lunch with his friends, Holtman donuts for a school treat, soccer practice & some neighbors/friends over for a firepit & cake. Sounds like a good day to me at least...
Tuesday was a good day too. Nana got here which made everyone happy. Zach & Kevin went to the Reds game. We also got scheduled for Josh's first treatment (tomorrow at 1p). It's seems so strange to think of getting this treatment started as a good thing. It just feels like a little forward movement with getting Josh better. And that...feels like we are moving in the right direction.
So everything is lined up & ready for tomorrow. We've talked to Josh's doctors, teachers, coach, friends & family. With all of this positive energy & prayers behind him, I know he is going to be OK. Sure, this medicine may or may not kick his little behind tomorrow. The not knowing is really the hard part right now. By 5p, we should have some piece of mind as to how this is immediately going affect him. The doctor said in a couple days we should see some improvement too. The best case scenario at this point is for him to take this medicine, not have bad side effects, have the medicine work and continue living his normal 12 year old life.
I'm going to post again tomorrow to let everyone know how it goes with his treatment. I also want to mention that Kevin & I are SO humbled and thankful for every hug, note, call, email, visit, kind word, prayer and sign of support for our family. We feel totally and completely loved. While this is an awful, awful thing to go through, all of this support has brought us a renewed faith in what our family really means to us & the people around us.
One last thing. Everyone keeps asking "What can I do". The only answer I have right now is to take a minute tomorrow morning to just pause & say a little prayer for Josh. I believe that modern medicine isn't going to be the only thing that gets him through all of this. Our faith & the faith of all of our family & friends will aid in his healing too.
Until tomorrow...
Tuesday was a good day too. Nana got here which made everyone happy. Zach & Kevin went to the Reds game. We also got scheduled for Josh's first treatment (tomorrow at 1p). It's seems so strange to think of getting this treatment started as a good thing. It just feels like a little forward movement with getting Josh better. And that...feels like we are moving in the right direction.
So everything is lined up & ready for tomorrow. We've talked to Josh's doctors, teachers, coach, friends & family. With all of this positive energy & prayers behind him, I know he is going to be OK. Sure, this medicine may or may not kick his little behind tomorrow. The not knowing is really the hard part right now. By 5p, we should have some piece of mind as to how this is immediately going affect him. The doctor said in a couple days we should see some improvement too. The best case scenario at this point is for him to take this medicine, not have bad side effects, have the medicine work and continue living his normal 12 year old life.
I'm going to post again tomorrow to let everyone know how it goes with his treatment. I also want to mention that Kevin & I are SO humbled and thankful for every hug, note, call, email, visit, kind word, prayer and sign of support for our family. We feel totally and completely loved. While this is an awful, awful thing to go through, all of this support has brought us a renewed faith in what our family really means to us & the people around us.
One last thing. Everyone keeps asking "What can I do". The only answer I have right now is to take a minute tomorrow morning to just pause & say a little prayer for Josh. I believe that modern medicine isn't going to be the only thing that gets him through all of this. Our faith & the faith of all of our family & friends will aid in his healing too.
Until tomorrow...
Wednesday, October 3, 2012
the first post
Just got the house to myself. Typically, having Kevin take all three boys out to a practice would give me a huge smile on my face. The house to myself....so quiet. Instead of laundry, dinner & all the other things that are staring at me, I thought I'd start this blog dedicated to filling everyone in on Josh (& other miscellaneous things). Who would have thought that taking to my keyboard would be the easiest way for me to fill people in & help me cope a little...
I first need to bring everyone up to speed on how we got to October 2, 2012 with our first baby having a diagnosis of ulcerative colitis (or UC as many call it). Last fall Josh was having some issues where we spent some time at our pediatrician's office & ultimately one trip to the GI (gastrointestinal) department at Cincinnati Children's Hospital. All of the doctors thought he has a small fissure, or tear, in the wall of his rectum. They sent us away with the thought that this wasn't a big deal & it would heal itself. That was November of 2011. In late January he began to have more issues which took us back to our pediatrician who, through lab work, found a common bacterial virus which we treated with your ordinary antibiotic. After Spring Break, the symptoms got worse. We ended up back at Children's with Dr. Palermo. They did more lab work that discovered he was positive for C-diff. They put him on this crazy antibiotic (side effects could include black hair growing on your tongue) which seemed to help initially. It was then, in June, when Josh had to have his 1st colonoscopy & upper endoscopy. The upper endoscopy came back normal, which indicates he most likely doesn't have Crohn's Disease. The colonoscopy indicated a lot of swelling in his colon (large intestine) which gave him the diagnosis of Ulcerative Colitis.
Then came the medications. He began taking steroids which were followed by 2 UC medicines that didn't work. The third medicine seemed to work some & we were able to taper off of steroids back in late August. In early September we went back in for a check with Dr. Palermo. He ran more lab work which indicated that there was a lot of inflammation still in Josh's colon. He recommended we do another colonscopy and another colleague of his concurred. After having 2 sets of opinions and being well aware of how Josh is doing on a daily basis, we decided to proceed with the 2nd colonoscopy. This was done this past Monday, October 1st.
The official results of the biopsies aren't in yet. What we did find out is that Josh's disease is a lot more extensive than we were hoping for. It spans the entire length of his colon. The inflammation is in the moderately severe to severe range. To put it simply, all of the medicines he had been taking didn't work. Total & complete bummer.
So, here we are now with a new plan. Both doctors have stated our next step is to put him on another medicine called Remicaid. It is a serious, serious drug. It is administered through an IV over a 4 hour period of time. He has to have one treatment this week (or as soon as Anthem gives us the thumbs up), another treatment in 2 weeks and a 3rd in 6 weeks. If it works he will continue these treatments every 8 weeks indefinitely, or until it no longer works for him. If it doesn't work, they will double the dose & follow the same timeline. If that doesn't work, they will decrease the amount of time between doses. And, heaven forbid, that doesn't work...we will hope there is another medicine to try before we have to turn to surgery to remove his colon.
That's where we are in a nutshell. You can google Remicade & surgery for removing a colon...but I wouldn't recommend it. It will make you sad & it will break your heart. Trust me on this one. What I would recommend is praying for Josh. If you saw him right now, you'd never even know he's sick. Seriously...he's at soccer practice as I type. He's got such an amazing spirit & he's unbelievably strong, in ways I could never have predicted. He's got the best group of friends & a support system bar none. He truly is an amazing young man & a gift to me & Kevin.
Once I know more & he undergoes these rounds of medicine, I'll post again. I'll try to keep all of you updated as much as I can. I can't tell you how much your love, friendship & support for me & my family has touched our hearts. Keep it coming...our little man is going to need it over the next couple months.
xo
I first need to bring everyone up to speed on how we got to October 2, 2012 with our first baby having a diagnosis of ulcerative colitis (or UC as many call it). Last fall Josh was having some issues where we spent some time at our pediatrician's office & ultimately one trip to the GI (gastrointestinal) department at Cincinnati Children's Hospital. All of the doctors thought he has a small fissure, or tear, in the wall of his rectum. They sent us away with the thought that this wasn't a big deal & it would heal itself. That was November of 2011. In late January he began to have more issues which took us back to our pediatrician who, through lab work, found a common bacterial virus which we treated with your ordinary antibiotic. After Spring Break, the symptoms got worse. We ended up back at Children's with Dr. Palermo. They did more lab work that discovered he was positive for C-diff. They put him on this crazy antibiotic (side effects could include black hair growing on your tongue) which seemed to help initially. It was then, in June, when Josh had to have his 1st colonoscopy & upper endoscopy. The upper endoscopy came back normal, which indicates he most likely doesn't have Crohn's Disease. The colonoscopy indicated a lot of swelling in his colon (large intestine) which gave him the diagnosis of Ulcerative Colitis.
Then came the medications. He began taking steroids which were followed by 2 UC medicines that didn't work. The third medicine seemed to work some & we were able to taper off of steroids back in late August. In early September we went back in for a check with Dr. Palermo. He ran more lab work which indicated that there was a lot of inflammation still in Josh's colon. He recommended we do another colonscopy and another colleague of his concurred. After having 2 sets of opinions and being well aware of how Josh is doing on a daily basis, we decided to proceed with the 2nd colonoscopy. This was done this past Monday, October 1st.
The official results of the biopsies aren't in yet. What we did find out is that Josh's disease is a lot more extensive than we were hoping for. It spans the entire length of his colon. The inflammation is in the moderately severe to severe range. To put it simply, all of the medicines he had been taking didn't work. Total & complete bummer.
So, here we are now with a new plan. Both doctors have stated our next step is to put him on another medicine called Remicaid. It is a serious, serious drug. It is administered through an IV over a 4 hour period of time. He has to have one treatment this week (or as soon as Anthem gives us the thumbs up), another treatment in 2 weeks and a 3rd in 6 weeks. If it works he will continue these treatments every 8 weeks indefinitely, or until it no longer works for him. If it doesn't work, they will double the dose & follow the same timeline. If that doesn't work, they will decrease the amount of time between doses. And, heaven forbid, that doesn't work...we will hope there is another medicine to try before we have to turn to surgery to remove his colon.
That's where we are in a nutshell. You can google Remicade & surgery for removing a colon...but I wouldn't recommend it. It will make you sad & it will break your heart. Trust me on this one. What I would recommend is praying for Josh. If you saw him right now, you'd never even know he's sick. Seriously...he's at soccer practice as I type. He's got such an amazing spirit & he's unbelievably strong, in ways I could never have predicted. He's got the best group of friends & a support system bar none. He truly is an amazing young man & a gift to me & Kevin.
Once I know more & he undergoes these rounds of medicine, I'll post again. I'll try to keep all of you updated as much as I can. I can't tell you how much your love, friendship & support for me & my family has touched our hearts. Keep it coming...our little man is going to need it over the next couple months.
xo
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