This is the first time in quiet a while where I am not sure how to start writing this blog post.
The last two days (not including today) have been very emotional and hard on us here at home.
Most of this is due to Connor battling his emotions which have been at an all time low.
To back up just a tat, when Connor was feeling so bad last week at school I recommended to him to start a journal and write down how he is feeling. He loves writing and my hope was and is that it will help him express himself better and get those depressing thoughts he has been having of his chest.
Well, I can tell you he took this to heart and he is channeling a lot of emotions into his journal.
The part that shocked me was the way he used certain words that we never use here at home but that he decided were the best way to tell us how he was feeling.
I did promise him to not post his entries here on the blog as he has a project planned but that I can give you ideas of what his writing were.
On Sunday and Monday he wrote that he felt like a 'looser' (one word we do NOT use in our home or out), that he felt bad and that no one was understanding how bad it was to live with JM. He said he was 'stupid' (the other word that is a big NO in our home) and not good at anything. He did write that his Family kept telling him otherwise but that we were just being 'nice' to him. He 'hated' the way he wrote and colored/painted. He said he wanted to quit fighting JM..... I asked him if he knew what that would mean and he looked at me and said 'That means I would die, right?'. Of course I said NO we would never let him die but that the pain he is in now will get worse if he does not take his meds and fight back with Therapy.
It was just one negative thought and action after the other and it really was hard on Alexander and I trying to get him out of this mind set. No matter how much we pointed out that his skills at writing, reading and his detail at art was so wonderful he just kept brushing us off. We tried to distract him but it was just not possible.... He spend a lot of time having those negative conversations and/or going to lay down and cry.
Now I had an idea that a lot of his mental battles are triggered by the medications he is taking and by using FB as a sounding board I was feeling confirmed in this. As Kathleen put it so nicely ... roid rage (Steroid) is all to common and this was voiced by many others. Lynn pointed out perfectly the inside of a battle from her view point of someone that has faced this battle all her life.
I e-mailed our beloved Dr. Jenny and we had a very long phone conversation this morning. She agrees that the meds can be at the core of the problem but we also agree that Connor will benefit having someone professional to talk to.
Tomorrow Connor will have some time to see the School Counselor to talk about the issues at school and on the 20th Connor will see Dr. Dona Sanders, a Therapist in CSprings.
The biggest worry of all was the question if Connor was depressed enough to hurt himself. When we saw Dr. Soep this afternoon she asked him and he said definitely not. When she asked him if he would seek help if he ever had those bad thoughts he replied he would talk to Mom or Dad as he does believe we would always tell him the truth, not Alexander however as he things he would lie to him and just say nice things ;) there had to be something funny in all of this - haha
Ironically today was actually a really good day for Connor, figures as it was the day we had to spend at The Children's Hospital in Aurora! Maybe he was so happy because he did not have to go to school ... I tell you at this point I am not sure at all what the motivation was!
However, we saw the Surgeon about Connor's poky and it is indeed a stitch that must have been left behind from the Port Surgery. There are only two Stitches that do not resolve and those are the two that were put in at the original Port Surgery, when the Port was put in, to hold the Port in place.
Connor was give three options and I was actually handing over the decision to Connor today as I figure he might need to feel more in control about what happens to him.
The first choice was to numb it today and cut it out. The Surgeon was not to keen on doing this as he said he would have to dig around to get the stitch and when Connor asked him if he would be put to sleep he said no. When Connor asked if it would hurt, the Surgeon answered 'yes'.
Option #2: Leave it in there until it pokes through the skin and then come in so the Surgeon can pull it out!
Option #3: Wait until he goes in for another surgery again and while he is under they will take it out.
So drum roll ....... Connor went for Option 2 & 3.
However later he asked me what my choice would have been and I said #1, NOT because I would want him in pain but I figure it bothers him all the time it be better to just get it done. Connor looked straight at me and said he wished I would have made the call so it would be all over now .... OH KIDS!!!! you can't win - haha
The good news from Dr. Soep's visit was the taper from 4 ml of Prednisolone to 3 ml!!! The bad news for Connor was that he will have a few more weeks on Solumedrol Infusions. The good news for me and Connor is that he can have his Chemo Treatments during the Infusions so no poking here at home for a couple of weeks!
Which reminds me that for the first time since Amerita started to send us our Methrotrexate Injections in almsot 3 years we had a mess up. I always relied on Debbie at Amerita to send out the shipment and when I found out a couple of weeks ago that she was not working at Amerita anymore I was sad. So on Friday when the three week supply was gone I called to check on the next shipment and was told that all was set up. Well, today was Connor's Shot day and no Injections! I called and got a return call this pm that there was a mistake and they will correct it and have it with us by tomorrow. Oh how I miss Debbie!!! however, since Connor will get his Chemo now with his Infusions I can be save to say that we are covered for this week :)
Ron came back today from his extended Anchorage trip. The timing was close as I almost had to take Alexander out of school as well but Ron made it into CSprings just in time to pick up Alexander from school. Lucky timing! He also came home with lots of treats from AK and some adorable pictures from our two Grand Daughters and Daughter :) :) :)
My other highlight today was the fact that Connor was indeed was in a good mood all day and the surprise and in depth conversation I had with Sandy (our loved, loved Cottage School Teacher Mrs. Struble). She said such nice things about me and it came so unexpected for me. It is funny how when you feel really exposed and vulnerable someone comes up to you and turns it all around. Same to my FB friend Stacey! Thank You!
I have to say as well that the support and advice that came through this weekend was beyond amazing. I can not tell you how much each story went to my heart and how I felt less on an island when I realize this is just a part of this JM Journey and so many of you share this Journey with your own experiences.
I feel as if I say this all the time but I hope you all know I mean it from my heart:
THANK YOU!!!
You give me strength, advice and wisdom when I need it and you listen when I just need to vent!
Hugs,
R A C A
The last two days (not including today) have been very emotional and hard on us here at home.
Most of this is due to Connor battling his emotions which have been at an all time low.
To back up just a tat, when Connor was feeling so bad last week at school I recommended to him to start a journal and write down how he is feeling. He loves writing and my hope was and is that it will help him express himself better and get those depressing thoughts he has been having of his chest.
Well, I can tell you he took this to heart and he is channeling a lot of emotions into his journal.
The part that shocked me was the way he used certain words that we never use here at home but that he decided were the best way to tell us how he was feeling.
I did promise him to not post his entries here on the blog as he has a project planned but that I can give you ideas of what his writing were.
On Sunday and Monday he wrote that he felt like a 'looser' (one word we do NOT use in our home or out), that he felt bad and that no one was understanding how bad it was to live with JM. He said he was 'stupid' (the other word that is a big NO in our home) and not good at anything. He did write that his Family kept telling him otherwise but that we were just being 'nice' to him. He 'hated' the way he wrote and colored/painted. He said he wanted to quit fighting JM..... I asked him if he knew what that would mean and he looked at me and said 'That means I would die, right?'. Of course I said NO we would never let him die but that the pain he is in now will get worse if he does not take his meds and fight back with Therapy.
It was just one negative thought and action after the other and it really was hard on Alexander and I trying to get him out of this mind set. No matter how much we pointed out that his skills at writing, reading and his detail at art was so wonderful he just kept brushing us off. We tried to distract him but it was just not possible.... He spend a lot of time having those negative conversations and/or going to lay down and cry.
Now I had an idea that a lot of his mental battles are triggered by the medications he is taking and by using FB as a sounding board I was feeling confirmed in this. As Kathleen put it so nicely ... roid rage (Steroid) is all to common and this was voiced by many others. Lynn pointed out perfectly the inside of a battle from her view point of someone that has faced this battle all her life.
I e-mailed our beloved Dr. Jenny and we had a very long phone conversation this morning. She agrees that the meds can be at the core of the problem but we also agree that Connor will benefit having someone professional to talk to.
Tomorrow Connor will have some time to see the School Counselor to talk about the issues at school and on the 20th Connor will see Dr. Dona Sanders, a Therapist in CSprings.
The biggest worry of all was the question if Connor was depressed enough to hurt himself. When we saw Dr. Soep this afternoon she asked him and he said definitely not. When she asked him if he would seek help if he ever had those bad thoughts he replied he would talk to Mom or Dad as he does believe we would always tell him the truth, not Alexander however as he things he would lie to him and just say nice things ;) there had to be something funny in all of this - haha
Ironically today was actually a really good day for Connor, figures as it was the day we had to spend at The Children's Hospital in Aurora! Maybe he was so happy because he did not have to go to school ... I tell you at this point I am not sure at all what the motivation was!
However, we saw the Surgeon about Connor's poky and it is indeed a stitch that must have been left behind from the Port Surgery. There are only two Stitches that do not resolve and those are the two that were put in at the original Port Surgery, when the Port was put in, to hold the Port in place.
Connor was give three options and I was actually handing over the decision to Connor today as I figure he might need to feel more in control about what happens to him.
The first choice was to numb it today and cut it out. The Surgeon was not to keen on doing this as he said he would have to dig around to get the stitch and when Connor asked him if he would be put to sleep he said no. When Connor asked if it would hurt, the Surgeon answered 'yes'.
Option #2: Leave it in there until it pokes through the skin and then come in so the Surgeon can pull it out!
Option #3: Wait until he goes in for another surgery again and while he is under they will take it out.
So drum roll ....... Connor went for Option 2 & 3.
However later he asked me what my choice would have been and I said #1, NOT because I would want him in pain but I figure it bothers him all the time it be better to just get it done. Connor looked straight at me and said he wished I would have made the call so it would be all over now .... OH KIDS!!!! you can't win - haha
The good news from Dr. Soep's visit was the taper from 4 ml of Prednisolone to 3 ml!!! The bad news for Connor was that he will have a few more weeks on Solumedrol Infusions. The good news for me and Connor is that he can have his Chemo Treatments during the Infusions so no poking here at home for a couple of weeks!
Which reminds me that for the first time since Amerita started to send us our Methrotrexate Injections in almsot 3 years we had a mess up. I always relied on Debbie at Amerita to send out the shipment and when I found out a couple of weeks ago that she was not working at Amerita anymore I was sad. So on Friday when the three week supply was gone I called to check on the next shipment and was told that all was set up. Well, today was Connor's Shot day and no Injections! I called and got a return call this pm that there was a mistake and they will correct it and have it with us by tomorrow. Oh how I miss Debbie!!! however, since Connor will get his Chemo now with his Infusions I can be save to say that we are covered for this week :)
Ron came back today from his extended Anchorage trip. The timing was close as I almost had to take Alexander out of school as well but Ron made it into CSprings just in time to pick up Alexander from school. Lucky timing! He also came home with lots of treats from AK and some adorable pictures from our two Grand Daughters and Daughter :) :) :)
My other highlight today was the fact that Connor was indeed was in a good mood all day and the surprise and in depth conversation I had with Sandy (our loved, loved Cottage School Teacher Mrs. Struble). She said such nice things about me and it came so unexpected for me. It is funny how when you feel really exposed and vulnerable someone comes up to you and turns it all around. Same to my FB friend Stacey! Thank You!
I have to say as well that the support and advice that came through this weekend was beyond amazing. I can not tell you how much each story went to my heart and how I felt less on an island when I realize this is just a part of this JM Journey and so many of you share this Journey with your own experiences.
I feel as if I say this all the time but I hope you all know I mean it from my heart:
THANK YOU!!!
You give me strength, advice and wisdom when I need it and you listen when I just need to vent!
Hugs,
R A C A
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