Debt

Posted by Unaffected ,



Back in the hospital again... Brayden developed an infection in his picc line which caused him to spike a fever. Joe brought him into the ER and he was admitted into the oncology floor for a couple of nights. He is getting antibiotics on top of his daily chemo, and is going to get his port in his chest Monday, most likely. 

The list of meds and chemo I was handed today was long, and scarey. It is even more scarey now that I know there could have been a possibility all of this would have been unnecessary. 10 bouts of chemo here and 10 there feels like a million when I am trying to understand why the possibility of needing none was never even considered. Before, his treatment felt like hope. Now, it feels like torture. I need to remember that the end goal is still the same, and the path I was once okay with is still the same path. But how do you resolve yourself to being content with something once you know something better could have been. Maybe it wouldn't have been better... maybe we would have talked to the doctor and found out the side effects of that drug were more harsh than with chemo. But we will never know, and the fact that my son is being subjected to so much.... so, so very much... without even giving other options a sounding board is just killing me. I had to leave the room when they handed me the schedule for the next 56 days so that my son didn't see me doing everything I could not to cry. I have to try and not let it show that I can't look at his father, and that it is taking everything I have not to be incredibly mad.

But no matter what I do, I can't stop the feeling that he shouldn't have to do this... it isn't fair. He trusts his parents to do everything they can to lessen his pain and the time he is sick. He trusts that his parents will go with the best choice... and refusing to listen to those choices is robbing him. It is failing him. But because I am one of two, I cannot force anything, and therefore I am forced to be a party to willful ignorance. He could have been off chemo by now, and infections wouldn't have been such a concern. He could have been 2 weeks into a 6 weeks plan for treatment, but instead I am looking at 8 week schedules with the promise of more schedules to come for the next couple of years. 

More than ever, I wish I could just take it all away for him, go through it myself. Because now I feel like I owe him that. I couldn't give him the options he trusted me to consider... I can't shorten the time of his life that this will effect or give him back all that he is going to miss. He trusted me to provide the best, and I couldn't make that happen, or at least find out if the best was this or something else. I can't drag his dad onto a plane to NYC and I can't take him away without the other parent's permission (no taking kids out of FL state without the other parent's ok), so my hands are tied. But knowing it isn't my fault doesn't make it any less of a failure. So I wish I could take on all that he might have been able to avoid... because I owe him that. 

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Hope Floats

Posted by Unaffected ,



"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them.

When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell."
 
- Lance Armstrong

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Where do we go from here?

Posted by Unaffected ,



For the last few weeks Brayden has been in the consolidation phase of his chemo treatment. Basically, he gets a small dose of chemo everyday via pill, and a spinal tap with chemo every Thursday except next Thursday. He is in good spirits, but has been getting some of the nausea we had hoped he had escaped. He is doing well with a teacher that comes twice a week, and has some flexibility in where he can go and what he can do now. His numbers are coming back good and there haven't been any infections, which is a big relief. This coming week is free of appointments, and the week after that will be another spinal to see where we go from there. Hopefully, he will move into the maintenance phase, which means spinal taps are every few months and the chemo dosage is decreased. He will get a port, at that point. The port will go directly into his chest rather than the picc line into his arm. THat is going to be a hard thing for me, I already know it.

I said I wouldn't bring his dad into this blog, but I am incredibly upset right now. We had a chance to go to NYC for a treatment, fully funded, that would have shortened Brayden's fight from years to a couple months. No more chemo, no port, no spinal taps for the next two years, and no watching my baby feel like crap. By the time this treatment plan he is on is through, he will have been put under more than 20 times, and had 17 spinal taps. He will have been fighting leukemia for nearly 3 years and will have more of his little life effected than I can even think about. He will have restrictions, worries, and discomfort, as well as all the risks that come with each sedation and spinal tap, not to mention the chemo. I am having such a hard time not hating his dad for refusing to even meet with the doctor offering to take away the months upon months of shit awaiting our son. I didn't want to put this here to make it negative, but I don't know how to get over this. I don't know how to not be incredibly angry and disappointed. How do I stay positive about all of these procedures now that I know there may have been another way? I don't want to bash him, I just want to figure out how to forgive him.

I guess I am just hoping for some guidance and insight. I don't want to walk around with this anger since I have tried to be the one adult out of all of us who doesn't let their feelings affect Brayden's care. I have done well to put everything aside and only care about him... but now I am just so mad and disgusted. I don't know what to do...

Buttons - Thanks to Cousin Jenny!

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Day 29

Posted by Unaffected ,


Day 29


I sat with Brayden as they put him under. Another spinal tap, or lumbar puncture if you prefer the less scary terminology. Today is chemo and marrow testing to see where he is at and which direction we are going in with treatment. His labs have been coming back with numbers that are good, but it is likely that he will be looking at at least a few more months of lumbar punctures and treatment.


As for how he is doing, I am sure you can tell from the picture that he is puffy… to say the least. His tummy is distended so much that his belly button is nearly flat. You can see the veins just under his skin, and his face is almost unrecognizable other than his eyes and that beautiful dimple. He tells you he feels good or fine, but he sleeps a lot and when he isn’t sleeping he is still worn out. There are sores all around his lips, making his chin and surrounding skin pretty sore. It’s hard to keep a 7 year old from picking at itchy sores, by the way. He eats a lot, which is good. And he plays when he is not exhausted. Thank goodness for legos, the xbox, and all of the great toys everyone has been sending his way!


Also new, but not as noticeable yet, is his hair loss. It comes out a few strands at a time if you run your hands through his hair and Joe says there has been some on his pillow in the mornings. I imagine we will cut it short soon to avoid the drastic step from long hair to no hair, but in all honesty… it seems to be harder on me than it is on him. Maybe he just doesn’t show it, but for me it makes this whole thing tangible and visible. Sure, all the other things we have been doing and all the other ways he has been showing his illness are tough. But nothing says “my baby has cancer” like his long blond hair in your hands. I didn’t think it would bother me so much, but it was hard not to cry right then and there. Hopefully, him being a boy and having a history of a closely shaved head will soften the effect it has on him, though I imagine there will be stuff he won’t say just like when I know he is tired or not feeling well and he says he is good.


Today is the last day on steroids, which is a big part of what is making him so bloated and puffy. I am hoping it will make him feel better to get off of them, but  I also know that they were helping to lessen the trauma/inflammation of the chemo to his body and stopping them may have the opposite effect of what I am hoping for. 


I feel incredibly helpless. A major part of that is being forced onto me, so I am working on not hearing it, but a good chunk of it is because I can’t fix it. I mean, we are trying to fix it but fixing it makes him feel worse, and I CAN’T fix that.

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Reporting In

Posted by Unaffected ,

It has been a bit of time since my last update, and I apologize to those of you who have been looking for news only to find none. I had to make a trip to Ohio and, of course, with that came additional issues. Added in with everything else to deal with, I just needed a bit of a break and to focus on all the irons in the fire that I could. 

While I was MIA, Jenny emailed me some pictures from the Relay event she did a few weeks ago. We are so grateful that she and her friends participated in Brayden's name and helped to raise money for the cause. It really means so much to see people getting involved in Relay, which is something I held close to my heart even before Brayden's diagnosis. If it hadn't been for a storm blowing away our whole Relay camp a couple years ago, my couple hours would have also been a full day. lol.



I really appreciate everyone who is praying and sending good thoughts, and those who have helped out in one way or another. I have always been so thankful for the friends I have and the family surrounding me, and I couldn't feel more supported and blessed in circumstances like this than I do now.


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