Worst possible news. The cancer is back and it is untreatable. We are going to Cincinnati tonite to CCHMC to get him ready to live the rest of his life. Oh my god, how can this happen?
Any of you can come and see us this weekend, text, FB, or call to let me know.
He is such a good boy.
Wednesday, November 2, 2011
Tuesday, June 21, 2011
Happy Birthday Jr!
I know it's been a long time since my last post, but we have been home. Jr is doing wonderfully. Today was his birthday, he is 3 years old. I cannot not even imagine that just 7 months ago, we were faced with the possibility that this day would never come.
So some things that have happened. His pheresis cather was removed and replaced with a PIC in his arm, much less obtrusive. He has been off TPN (total IV nutrition) for almost 2 months. His MRI and LP came back with no sign of tumor. He eats almost constantly and is growing hair back.
And last but not least, he is 3 years old, in every sense of the word. With all the joys and struggles that come with it. His time in the hospital where someone was there whenever he made the slightest moan or peep has created quite the little control freak. We are lucky that he is so easy to please.
We are starting proton radiation therapy next week in Bloomington, Indiana. It is about 3 hours away, so once again the family will be scattered. A big shout out to Nana who will have the Logan and Lukas for a couple of weeks up in Michgan.
Please pray the side effects are small and the results big!
So some things that have happened. His pheresis cather was removed and replaced with a PIC in his arm, much less obtrusive. He has been off TPN (total IV nutrition) for almost 2 months. His MRI and LP came back with no sign of tumor. He eats almost constantly and is growing hair back.
And last but not least, he is 3 years old, in every sense of the word. With all the joys and struggles that come with it. His time in the hospital where someone was there whenever he made the slightest moan or peep has created quite the little control freak. We are lucky that he is so easy to please.
We are starting proton radiation therapy next week in Bloomington, Indiana. It is about 3 hours away, so once again the family will be scattered. A big shout out to Nana who will have the Logan and Lukas for a couple of weeks up in Michgan.
Please pray the side effects are small and the results big!
Monday, May 9, 2011
Link
I actually had the courage tonite to read about other parents ordeals with this type of cancer. I found Caiden. He has gone through an almost identical treatment regimen. His site is fortheloveofcaiden.blogspot.com, he is so lucky to have a mother to put in so much information. Her blog is what I aspired mine to be like. Please include Caiden in your prayers.
Just a little note.
He had his MRI and Lumbar Puncture last Friday. They cannot find any cancer cells. I am so crying right now. He is currently CANCER FREE!
Friday, April 8, 2011
Last Round...Hopefully
We were admitted last Friday for our last round of chemo with stem cell transplant. What it means for now is that there is no more scheduled chemo and we can hope that the MRI will show no cancer. If it shows nothing, they may do a lumbar puncture to see if there are any cancer cells floating around in there. That is the way I understand it at least.
So if there is something found on the MRI or LP, we may be headed for radiation. But reguardless, at least two good things are going to come when we are done with the transplants. First, we are going to be home for at least a couple of months, I think. Second, his hair may start to grow back!
I've got some pictures I will be posting later on.
So if there is something found on the MRI or LP, we may be headed for radiation. But reguardless, at least two good things are going to come when we are done with the transplants. First, we are going to be home for at least a couple of months, I think. Second, his hair may start to grow back!
I've got some pictures I will be posting later on.
Tuesday, March 22, 2011
Friday, March 18, 2011
Going home
So we are blowing this popcicle stand in the morning. Sorry, I would have posted more, but really nothing exciting happened this time. If anything, this was a breeze. We are getting out two days earlier than last time which is awesome. So we will be home until April 1, I think. The boys also have off school for spring break the last week of March so if anyone wants to come and visit, (Addie, Holly, John), nows the time to do it.
Jr is doing great, when we were admitted this time, they gave him dexamathasone which had interesting side effects. First, it made him into a 15 yr old girl, drama, crying, moody, loopy. Second, he ate. For 3 days, there was nothing he would not eat. It was great, awesome. He is also taking his pacifier again. He has tapered off but I am sure it will pick up again once we get home.
Yippy Skippy!
Jr is doing great, when we were admitted this time, they gave him dexamathasone which had interesting side effects. First, it made him into a 15 yr old girl, drama, crying, moody, loopy. Second, he ate. For 3 days, there was nothing he would not eat. It was great, awesome. He is also taking his pacifier again. He has tapered off but I am sure it will pick up again once we get home.
Yippy Skippy!
Tuesday, March 8, 2011
Finally a post
I'll betcha you didn't even know you were wondering what stem cells looked like.
I do not know what kind of face Jr is making at that moment, I am pretty sure he was not crying. Stem cell transplants do not hurt. They flow in by gravity over about 15-20 minutes.
The next pic shows the apparatus they go in through.
I do not know what kind of face Jr is making at that moment, I am pretty sure he was not crying. Stem cell transplants do not hurt. They flow in by gravity over about 15-20 minutes.
The next pic shows the apparatus they go in through.
Montenegro? Really? New viewer stats.
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Sunday, February 20, 2011
Not gonna jinx myself
We are supposed to leave in the morning. One issue up in the air is his feeding tube. He has thrown up 2 NJ tubes and 2 NG tubes since Thursday. These are the tubes used for natural feeding going into his stomach through a tube down his nose. He also gets intravenous feeds called TPN, he can get total nutrition through this method but the tubes are better because it keeps his gut working. So, without the tube he will drink a bit and eat a bit, not enough to sustain him but enough, in my opinion, to keep his gut working. The TPN can take care of the actual nutrition while we are at home.
Then there is the G tube, this is a tube that provides natural feeding but is placed through the stomach wall under anestetic. It is about a 3 day inpatient procedure. One of my issues last Saturday was that I wanted to get this scheduled so there would be no delay this week in getting it done. Well, the doctor cancelled it for some reason.
They had their chance, if they think they are going to get me and Jr here for 3-4 days during the 10 days before our next scheduled chemo, they are nuts.
No tube, means a happy guy, he hated it the whole time he had and i say good riddance to it.
Then there is the G tube, this is a tube that provides natural feeding but is placed through the stomach wall under anestetic. It is about a 3 day inpatient procedure. One of my issues last Saturday was that I wanted to get this scheduled so there would be no delay this week in getting it done. Well, the doctor cancelled it for some reason.
They had their chance, if they think they are going to get me and Jr here for 3-4 days during the 10 days before our next scheduled chemo, they are nuts.
No tube, means a happy guy, he hated it the whole time he had and i say good riddance to it.
Friday, February 18, 2011
Guess What
So guess what, I was skipped on rounds this morning. I sat in this room for 3 hours waiting for rounds to find out that rounds were done and I had been skipped, so ticked. I've got things I need to know, there's the GJ tube that needs to be scheduled for next week, his counts are going up and I wanna get out of here. I found out that there was some sort of situation that families could not be out in the hall for rounds, bull, no one could come and tell me? RRRRRR!
So finally I talk to someone, tell them what I need, off they go, time for lunch.
In front of the elevators.
I see a mother our ward and she has everything packed up to go home.
"How long do you get to go home for?", I say.
"Forever", she says.
"OMG, that's great, congratulations!"
"She died this morning"
Jesus Christ, like I don't even know where I am, her child died today, someone else's child could die tomorrow. I am in a hospital that treats really, really sick kids. My child is really, really sick. Jesus Christ.
So finally I talk to someone, tell them what I need, off they go, time for lunch.
In front of the elevators.
I see a mother our ward and she has everything packed up to go home.
"How long do you get to go home for?", I say.
"Forever", she says.
"OMG, that's great, congratulations!"
"She died this morning"
Jesus Christ, like I don't even know where I am, her child died today, someone else's child could die tomorrow. I am in a hospital that treats really, really sick kids. My child is really, really sick. Jesus Christ.
A pic
Just in case you haven't seen a picture of the most precious toddler on the planet in a while, if ever. Here he is, minus the NJ tube which accidently got pulled out yesterday morning.
Tuesday, February 15, 2011
Waiting
OK, once again his counts are bottomed, for real this time, he feels good, I feel good. Can we please go home now?
Sunday, February 13, 2011
Pain
So Jr got some of his cells back, blessed by Pastor Sue here at the hospital. She is my go to person when things are bad, when I am feeling depressed. She is also our bubble connection. Junior is usually happy to see her, first because he knows that she is not going to come and poke or prod, second, her unending supply of bubbles and the will to blow them until he is satisfied. Bless you Pastor Sue!
The cells went in with no problem, very anti climatic since his counts still continued downward and we do not see any improvement from it. Now his counts are bottomed, the first fever is here.
Pain meds. He is now receiving pain medication from the sores in his mouth and throat. He feels terrible. We started with morphine (scary for me) but have decided that it makes him nauseous. He is now getting dilaudin, another opiate, seems to be working better.
It was so nice outside today, this whole trip has not been so bad when the weather was wintry and cold, nice weather makes me want to get him outside. Depressing.
The cells went in with no problem, very anti climatic since his counts still continued downward and we do not see any improvement from it. Now his counts are bottomed, the first fever is here.
Pain meds. He is now receiving pain medication from the sores in his mouth and throat. He feels terrible. We started with morphine (scary for me) but have decided that it makes him nauseous. He is now getting dilaudin, another opiate, seems to be working better.
It was so nice outside today, this whole trip has not been so bad when the weather was wintry and cold, nice weather makes me want to get him outside. Depressing.
Saturday, February 5, 2011
There and Back Again
We are back at the hospital for the long haul. 3 courses of chemo with a stemcell transplant, 1 course/transplant every 28 days. 3 months in the hospital, egads. We were home for almost 2 weeks and it was wonderful. Sorry I didn't post but I decided to be greedy with my joy. Amazing, I can behave anyway I like right now, because I have a child with cancer.
So, Junior is walking pretty well again, he had such a good time at home. I am remembering when this all started and we were in the ICU, still in shock, and Manfred and I told each other how grateful we would be when he was back to himself, being a little monster/destroyer. Well, we had to remind ourselves of that vow this last week.
So, Junior is walking pretty well again, he had such a good time at home. I am remembering when this all started and we were in the ICU, still in shock, and Manfred and I told each other how grateful we would be when he was back to himself, being a little monster/destroyer. Well, we had to remind ourselves of that vow this last week.
So now to the technical stuff, his chemo this time is carboplatin and thiotepa for 2 days, a day of rest and then the stemcell transplant. The rest of the time in recovery, I am expecting more of the same only worse. This chemo is much stronger than before and kills everything, so basically, without the stemcells, he is getting enough drugs to kill him once a month for 3 months, lovely.
Oh sorry, how could I forget, the results of the MRI! Well, it seems that we are doing well. The last chemo not only stabilized the tumor but there was some reduction! That was great news, a hope giver. It is possible that after this course, it may be gone, but if not, we should be eligible for radiation therapy since he will be almost 3 years old.
Next post in a few days or so after the chemo.
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