Monday, May 11, 2009

I have been promising an update for longer than week now. But life has been so crazy that I have not had time to just sit and write. So much has taken place in the past few days that I am not sure I can even adequately share. Jonathan is in MRI right now. Since I made myself leave Mya at home, I finally have some time alone. Its amazing how much easier it is to think when it is quiet and no one is calling your name constantly!

Today we are scanning Jon's brain. Its been about 4 weeks since we discovered his reoccurrence. Seems like it was forever ago. So much has happened. I don't know know what to expect the outcome to be today. I have learned over the course of the past 6 years not to go that far into the future. Too much energy is wasted...too many hopes dashed...too many needless worries. I have been wrong before... not too often but I have been. I do know that Jon is not right and I wouldn't be surprised if there is more growth. We talked about that last night...that's the worst possible news and even that is nothing we haven't heard before. So I am ready for whatever the word is... praying for the best, preparing for the worst.

It will be a busy day today. MRI for 45 minutes. Then to clinic for blood work and exam and to get the results of the MRI. Last will be a trip to the psychiatrist... which I hope will be done by noon so we can make it home before dinner!

We are blessed to have such an incredible team of doctors. Our head doctor genuinely cares about Jonathan and works hard to do everything possible. He gives me the comfort of knowing that he is ready to do whatever needs to be done for Jonathan. Our main nurse practitioner has become an emotional connection for me. She has truly entered into what life is like for us and each visit reaffirms to me that I am doing a good job. She listens to my gut feeling and offers reassurance and help. We all know Jonathan is complicated but they are not afraid of his complexity... instead they are helping to find answers. I know they have spent many hours on the phone with other professionals trying to find answers and that makes me feel at peace with their decisions. Our new psychiatrist, while I was not sure at first, has won my respect when he called me at 7:30 in the morning last week after reading my email to him. I know they care about my child. He is more than just another patient to them.

Many of you have asked about the appt with psychiatry from last week. Evidently, the secretary failed to complete the check in process so the doctor never knew we were there. I am too use to waiting for long hours at drs appointments so I really didn't think too much about it until the dr. came out and got his next patient- 2 hours past the time I had gotten there. They tried to reshedule me and I told them no. I told them I would wait until his next opening or he could see me at the end of the day but I was not leaving. Jonathan has been in a critical stay medically and psychiatrically and I was not leaving until I had some answers. Finally, we got in to see the dr. at 4:30 (we arrived at 1) and at first I honsestly wanted to cry. He started telling me how he thought Jonathan was having a reaction to too many meds. And how he was a conservative dr who although not afraid to use meds was much more conservative in his use. He informed me of all the risks of the medicines and the mortality rate. The entire time I was thinking- I waited this long for this... you have got to be kidding me! I totally know and understand the risks. I know that this medicine is going to affect and possible cause his lifespan to be cut short. But so is his cancer. So is the brain damage. So is the broken thypothalamus that causes his body to crash constantly. Come on, I am giving him poison every few weeks. Hoping it kills the cancer cells but knowing it kills many more things in its path. So honestly I am really not afraid of medicine that will possibly have bad long term affects if it will give my child a chance at quality life now. What good is it to live long if you are unable to function or to remain with your family who loves you.
Tough choices some of us parents have to make.

The appointment did end well though. We decided to try ativan in hopes that it would calm down the impulsive outburst and calm his brain. The dr. also decided to present Jonathan to the outpatien team of therapist and other specialist to see what if any therapy he would benefit from. He hopes that JOn could benefit from some rehab type behavior modification training. Not sure about that one but I will try anything. I did leave the appt though wishing I lived in Denver and not in Colorado Springs. They have a medical day treatment program here. It is school, therapy, and psych care all wrapped up in one. And is specifically for children with medical diagnosis. This could be one of the only opportunities Jonathan could have to go to school and be in a safe modified environment and it would give me the break along with the peace of mind. I am not willing for him to just go to this kind of program in the Springs because it would only be at a mental hospital. This is in the actual hospital so he would be with his specialist who know him. Since this is not an option right now, we are considering the other options such as therapy etc.

The ride home from Denver last week was awful. Halfway home, Jonathan got very angry and out of control when I told him we would have to go to bed when we got home ( we didn't get back until 9pm). He proceeded to draw lines down his arms from his elbows to his fingertips. He scratched deep scratches into his arms and stomach until they bled. He stabbed his pen into his shirt leaving holes. He said awful, hurtful, nasty things. Once we arrived home he continued to be destructive. He cut his shirt into shreds. Threatened to puke in his bed, pee and poop in his pullup etc. Then as I was getting his bed ready he walked up and smacked me. Dana and I had to hold him down so we could cut his fingernails so he wouldn't be able to hurt himself any more. It was a lovely night to say the least.

It was scary though. Because I realized once again the reality that unless we can help this child he may not be able to stay with us for much longer. And that hurts. Its a cruel decision to even have to contemplate.

We started the ativan the next day but it didn't go so well. He become very loopy and acted like a drunk person. His eyes became weird, his speech was slurred, he couldn't walk right. The next day I gave him only half a dose. Same thing. Adding to the complexity of the problem, he started running a fever. It was unclear whether we really were have a reaction to the ativan or if it was that he was sick and crashing and the meds were magnifying the problem. The next day I didn't give him any ativan and he was still fairly letharic and weird. So we held the ativan until he seemed healthy. Last night I gave him half the dose because he started to become very agitated and upset again. This time he did fine and did not get weird. So who knows. He keeps us guessing thats for sure.

I think his MRI is almost done so I better wrap this up. We start our second cycle of chemo again on Thursday night. Hopefully the craziness will subside until then. Thanks again to all of you for your love, your prayers, and your cards and all the stickers for Jonathan. I can tell you the stickers have been throughly enjoyed!

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