Has it really been 5 days since I've had anything to say?? I guess we've been enjoying the good counts and getting out of the house! I have some pics to put up too, but that's David's job, so maybe tonight. Things are good on the homefront, we had a great weekend going wherever we pleased, we went shopping and got some winter stuff (being from Vegas we were NOT prepared for this cold weather, it was a lot of $$$ buying everyone coats, gloves, boots, etc!) Thank goodness for the 30% coupon I got from Kohl's, they must have known we needed it!! We have also been able to go to church together, to a birthday party, grocery shopping, and a picnic in the park. Fun, fun. We all got our flu shots yesterday, so we are taken care of there. Our pediatrician was nice enough to just do our whole family for $5/person because of our situation. That was very helpful and convenient.
Brinley is happy and is even getting some hair back for now, it will fall out again I hear during a later phase, but right now it is coming in old man style, the top has blond peach fuzz and the back has dark hair in a nice strip. It looks funny. Brinley will start her new phase, Interim Maintenance on Thursday, so she will be introduced to some new drugs and I am a little nervous about it. I hate to think things could get bad again, but I'm also trying to stay prepared for anything. It's weird to see pictures of her now with hair, it's like it was in a different life time. I represents a whole different world to me and sometimes makes me a little sad. I miss her hair. Her legs are so skinny now, and I miss her chubby legs (I guess she was never chubby, some of you are probably laughing, but the were chubby compared to now!!) But I have also learned to appreciate her bald little head and I know I will miss kissing it when her hair is back.
I will ask at clinic this week about her dressing around her line. She seems to be sensitive to all of the adhesive, we keep trying different bandages, and her skin keeps getting more and more irritated. I'm starting to wonder if the port would be better for her, it's such a pain to have this line, but I'm not sure about going that route just yet because I know she will have to get poked every time they access her port, so I will see what they say. A lot of kids Brinley's age have the port instead and seem to find it quite convenient since it is under the skin and not hanging out there.
She has to get another LP (chemo in her spine) so she will need to be sedated again. I'm hoping it will go as well as last time. The only appt time for the LP they had is 2:00PM, and she has to fast 6 hours prior. So I am not excited about Thursday and starving her all day again. She is going to be MAD! As long as her counts are good, we should be able to start IM right then. As far as I understand she will get the chemo in her spine, the vincristine through her line, and methotrexate through her line. Methotrexate is the same drug they use in the spine, but I'm not sure how she will do getting it intravenously. I'll post more when we go to clinic on Thursday.
For now we are doing great!
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Well, on it goes. All these things are for your experience. Life, Laugh, Love. And hank in there. Love, Dad
Here's a little something to cheer you up...a little Christmas cheer! (I'm talking about the picture right there! HeHeHe, I mean HoHoHo!
I'm so glad to see that things are going so well for you guys! You sound so happy, and that makes us all happy! About her dressing, I knew someone who was alergic to the adhesive on all bandages and she would break out in a bad rash too. Maybe there's a way they could test that? I hope that's not the case though!! I hope your happy and fun days continue!!!
Love,
Sole
Good to hear that you guys are getting out of the house. I have a friend who's little boy has a port and I asked him if it hurt. He said they put numbing lotion (emla cream) on it so it doesn't hurt at all. Definitely something to think about.
I have been really happy with Serenity's port. She dislikes being accessed (poked) but they give us numbing cream to put on an hour ahead of time and it is really, really fast. The one thing I've very grateful for is the risk of infection is much less with a port because it's under the skin.
About the bandages...Serenity's absolute least favorite thing is getting her dressing changed. It's more traumatic for her than getting accessed & we have tried so many things. She still cries each time we do it but here are a few things that have helped.
A friend gave us some detachol; I have heard that you can order it through Home Health. Sometimes the nurses will let you use the detachol instead of those orange solvent wipes to soak the edges of the bandage. Once it's good and wet you can literally just peel it away like you wouldn't believe. It's amazing stuff. The downside is that if you don't clean her skin off really really good (with a wet wipe or something) afterward it can kind of burn her skin. Because of that some of the nurses freak out if I even mention detachol. So I don't use it every time, but boy it works wonders when we do. My understanding is that it used to be widely used in the hospital but too many kids were reacting to it from not having it cleaned off properly, so now they have to use those other wipes. The nurses aren't allowed to use detachol, but they will let you use it. The exception is RTU. I have seen it used there by the nurses.
Another thing is now I always ask for Cavillon barrier film before they put her bandage on. The hospital has it in those little packets like what the alcohol wipes are in. I also carry a handful in the diaper bag wherever I go. If they wipe the Cavillon on her skin after cleaning it, before they put the bandage on, it will stick less to the skin & not cause as much damage.
Also I generally ask for a Primapore bandage. With her port it doesn't fit as well because of the shape, but it seems to come off a little easier than the bandages they typically use. There is a note in Serenity's file that we like to use those when she is accessed, along with the cavillon.
You guys are doing great! Can you believe you're already to IM? I took great comfort from Isabel's mom telling me that for most people IM is fairly smooth sailing, and gives you a taste of what LTM will be like.
If you guys haven't signed up for Candlelighters & Hope Kids you should! They have a lot of fun activities for families. Also if you didn't get a letter about the Christmas for Cancer Families thing in Dec (I think it's called) email me and I will try and locate the info.
Good luck to you! Maybe when things settle down for all of us we can get our girlies together. I think they would have fun.
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