Arie had treatment number 10 yesterday. Well, I should say more like trip #10 to see Dr. Yakes. He got her in there and did the angio, and found a tiny bit of the AVM that needs treated but he couldn’t get to it. He figured that it should stay put for awhile. Arie doesn’t have to go back for 6 months! I know he is waiting on her hormones to see if that spot grows more. The best part he used such trace amounts of alcohol that she isn’t on any steroids or has really any swelling today!
The downfall of this treatment is she was starting to cough on Wednesday night while we were sitting and having dinner with Shalon and Joshua. Today, she is really feeling icky. Coughing a bunch and her nose is running. I am hopeful we don’t need to visit urgent care to have her lungs looked at!
We LOVED the time we spent with Shalon and Joshua. It was such a wonderful dinner. We all just meshed and had fun. It was so easy to be with them. Shalon is as bubbly and happy in person as she is here. She is always smiling and so is Josh. They both were so interesting and fun, I hope that we can meet up with them again. Arie is already asking when they will be back and if we can be sure to see them! Arie was also very worried about Shalon yesterday. She was in recovery asking if Shalon had been taken back yet. Of course Shalon was taken back late in the day. Arie felt bad she couldn’t say goodbye! So she made sure that Denny called Josh to find out how Shalon was doing.
We also had the pleasure on Wednesday night of meeting Cyndi and her husband Mark (from Shalon’s website). They are another delightful couple from TX. Cyndi had her treatment on Wednesday. She was in quiet a bit of pain and general icky on Wednesday evening. By Thursday and go home time she stopped in to say goodbye to Arie and her bubbly disposition was back in full force. She and Mark are just wonderful to be around and again, I do hope we can connect with them again!
I am so grateful that we do have a break for at least awhile. Arie can continue being 11 and enjoying 5th Grade with out having the stress of a looming treatment. I thank you all for your continued support and prayers. It means a lot to us all knowing we now have this AVM family!
That is great news. I hope she has a wonderful 6 mths. just doing ‘kid stuff’ like she is supposed to be doing. How cool that you met Shalon and her husband and Cyndi and Mark. Just amazing really. I hope she doesn’t end up being too sick. Take care and remember to breath that big sigh of relief that you can feel for a little while.
It is so nice to wake up and get on the computer and find good news . I’M HAPPY FOR YOU .
Hey Jody and fam! It was such good news to learn she didn’t actually have treatment. That was a good start to my day of waiting! Sucks to be the oldest in for the day, you get the last turn. Although, being last had extra perks cause I was everyones favorite patient. Last one means that when they are done with me, they all get to go home!!! ha ha ha! Did you guys get Wendy for anesthia? I was supposed to have here, but Dr. Qin came in to get me cause Wendy was held up.
Arie- thanks for thinking about me. I appreciate that! As they were taking me off to the OR, I was kicking myself for not getting out of bed and popping over to say hello! Just a wall between us… Next time in June or July!
We too had a great time hanging out with you, and Arie is a wonderful little girl! She was very cute, stuck in the “between” little girl and teenager phase! She was very mature about meeting me and Cyndi and was a pleasure to talk with. Good job mom & dad! You got a great kid!
Ok- we are off to fly home and need to finish picking up the condo!!! I can’t “play” anymore!
Jody, I am so thirlled that you are almost on the other side of this journey. I am so happy for Arie. She must have been relieved to have some time off. I heard from Dr. Yakes office yesterday and they do want to start seeing maddy. I am having such a hard time with this decision. I am very afraid of what will happen to her face if we start messing with it but they feel that it WILL change no matter what. I am so confused and scared and sick to my stomach. I really dont know what to do. I was thinking maybe arie and maddy should talk. Maybe I should talk to you. I have talked to Shalon and camellias mom and know about there experiences. I am trying to learn as much as i can. Madison is obviously concerned with what the treatments will do to her looks and I cant really blame her. Part of me want to pray and hope that it will never change and just no to react right now but I dont know if that is the right answer. I know the sooner they see her the easier for them. I also know thats lots of fundraising efforts to get us there. I am so anxious today. We should talk…