minijeff Posted July 10, 2010 Author Share Posted July 10, 2010 so another week has passed with still NO answers!!! I practically jump every time there is a long distance call or I have messages on my cell phone while at work....it is really draining on me and my wife is feeling it worse than I am. This week Kyrra had to have isotopes injected on thursday(this did not go well as it took my wife and two nurse to hold her still as she has really gotten to hate/fear needles now), some prep drink on wednesday and then a scan today. so more tests to wait for the results of, yay! now the part that did give me a smile is that we should watch out to not make her mad since the radioactive isotope they use is GAMMA radiation since it has a shorter half life....gotta watch for her to hulk out on us I guess....could have a youg She-Hulk in the house! thanks again for supporting my nervous system and heres to some good minimate weeks to keep me distracted! Jeff Quote Link to comment Share on other sites More sharing options...
handsomedevil Posted July 10, 2010 Share Posted July 10, 2010 Dude. I'm feeling for you. Your posts are horrifc to fellow parents. I can't imagine. Hang in there, brother. They need you strong. Quote Link to comment Share on other sites More sharing options...
TBT! Posted July 10, 2010 Share Posted July 10, 2010 Hey Jeff, My experience with medical issues is that no news is usually good news, they only rush to tell you the worst, so I know it's hard but treat the delay as a positive thing. I hope all goes well and my thoughts are with your daughter and the rest of the family. T. Quote Link to comment Share on other sites More sharing options...
minivenom Posted July 10, 2010 Share Posted July 10, 2010 I know there's no comfort in not knowing, but your family continues to be in my prayers and hopefully you get some good news soon. I'll just echo what everyone else is saying... keep hanging tough buddy. Quote Link to comment Share on other sites More sharing options...
minijeff Posted July 15, 2010 Author Share Posted July 15, 2010 just a quick note to anyone still hanging out for news, today we will know whats going on...the Dr called on Monday and said that he is going over the pathologists report from the results and wants to confer with said pathologist about the details and will in turn call us today to share the findings. I get the vibe that its not as serious as it could be but that just could be my wishings too....anyways, I'll be trying to work today while waiting to here whats going on and when I get a chance I'll post the findings here too! Thanks! Jeff Quote Link to comment Share on other sites More sharing options...
Turtle Posted July 15, 2010 Share Posted July 15, 2010 This must be the longest day of your life. Hopefully they are just crossing the t's and dotting the i's before they tell you your little She-Hulk is ok. Quote Link to comment Share on other sites More sharing options...
Jatta Pake Posted July 15, 2010 Share Posted July 15, 2010 Been thinking about you and your young ones Jeff. I hope everything goes well. I can't imagine what you and your wife have been going through. I will be checking MMMV all day today! Quote Link to comment Share on other sites More sharing options...
Nessex Posted July 16, 2010 Share Posted July 16, 2010 We're all waiting with you man. Your family will be in my thoughts all day. Quote Link to comment Share on other sites More sharing options...
jcastick Posted July 16, 2010 Share Posted July 16, 2010 Hoping everything turns out well for you guys...... We will continue to have you and your family in our thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
minijeff Posted July 20, 2010 Author Share Posted July 20, 2010 We just spent the weekend celebrating my sisters wedding and the party continues in the Burton house. Kyrra will be fine!!! She has a tumor called a neuroblastoma. There are three types of neuroblastoma. The immature form which metastisizes (spreads), a middle kind which may or may not spread and a tumor called a Ganglioneuroma. A ganglioneuroma is a tumor (which we refer to as a meatball) of mature cells. This type of meatball does not spread. The biopsy of the center of the meatball contained scar tissue/fat and ganglion cells (which are the mature type of cells). Based on Kyrra's overall health, appearance and normal test results on all of her other tests (thank god!) they feel it she has the Ganglioneuroma. This ganglioneuroma is located in the adrenal gland on top of her right kidney. Thankfully she has two adrenal glands so there is not any worry there. There is also no worry about the meatball affecting her kidney at this time. Our next step is to talk with the Surgeon about removal. Since it is summer he is currently on holidays but as soon as he's back you can bet your boots that I will be calling him. If he feels the meatball cannot safely be removed they will monitor it with ultrasound and periodic CT scans. There is a 2 percent chance that the meatball could revert back to the immature form and start causing isssues like spreading. This is extremely rare. There is also a small chance the meatball could grow on it's own in size. These are the things they will be monitoring Kyrra for if surgery is not an option. NOTE: We are calling the tumor a meatball because it sounds less scary and foreboding to a four year old who doesn't understand what is going inside of her little body. Don't think that we are not taking this with absolute seriousness. I'm the type who makes jokes and tries to use funny words and humor to deal with things. Otherwise I am not sure how I would've surivived the past three weeks. I will update when we know surgery news and options. Many huge thanks to you guys for your positive words and thoughts and to all of you that I have rambled with off board, its been a great help...I can now get back to work on the comic book that some of you may want to see more of and all that good stuff! Jeff of the Miniacs Quote Link to comment Share on other sites More sharing options...
Turtle Posted July 20, 2010 Share Posted July 20, 2010 Rarely does a week start so well. It's really good to hear your little one will be alright. I'll keep my fingers crossed the surgeon will be able to operate. Also, calling it a meatball makes it less scary to me, and I'm 29. Cancer, surgery, and all of those other big words are so ominous. I totally get why you'd call it a meatball around your daughter. Great to hear it was good news, and good luck to you and the family in the next step. Quote Link to comment Share on other sites More sharing options...
homestar17 Posted July 20, 2010 Share Posted July 20, 2010 You can call it whatever you want -- no way that you're not taking things seriously. (A big F.U. from me to anyone who says otherwise.) /rant I'm glad that things have taken a turn for the better & here's to them continuing. Thanks for keeping us posted. With no news for such a big stretch I was starting to get worried. Hugs & love to K & your family! Quote Link to comment Share on other sites More sharing options...
Nessex Posted July 20, 2010 Share Posted July 20, 2010 That is just the best news jeff! You must be so relieved. I know it's perhaps not the right word, but Congratulations on this wonderful wonderful news. Quote Link to comment Share on other sites More sharing options...
jcastick Posted July 20, 2010 Share Posted July 20, 2010 Wonderful News Jeff!!! Quote Link to comment Share on other sites More sharing options...
boyd Posted July 20, 2010 Share Posted July 20, 2010 That's great news Jeff. I'm so happy for you and your family. Wishing Kyrra the best in dealing with her meatball Quote Link to comment Share on other sites More sharing options...
Aapje Posted July 26, 2010 Share Posted July 26, 2010 thats really good news, man Im very happy for you guys Quote Link to comment Share on other sites More sharing options...
wallbreaker2.0 Posted July 26, 2010 Share Posted July 26, 2010 Awesome news although I think you've totally turned me off meatballs. Quote Link to comment Share on other sites More sharing options...
minijeff Posted August 24, 2010 Author Share Posted August 24, 2010 So I think this is the last I need to update this one, we talked to the surgeon the other week and found out a bit more about her meatball. He said it is quite a bit bigger than I had figured it was and even gave us copies of the CT scan pictures of it. Now as far as removal goes, because it is non-cancerous(finally a direct confirmation) he feels it is too risky to remove since it is wrapped up and around the veins and arteries of her right kidney. So now we just need to find out the monitoring plan for her. And now I am off to enjoy her and her two sisters 5th birthday festivities! Cant believe they are already five! Jeff of the Miniacs Quote Link to comment Share on other sites More sharing options...
MINI_MYTE Posted August 24, 2010 Share Posted August 24, 2010 Say "Happy Birthday" to the girls for me. All the best to you guys. Quote Link to comment Share on other sites More sharing options...
karamazov80 Posted August 24, 2010 Share Posted August 24, 2010 Just caught the good news. Congrats Jeff! Quote Link to comment Share on other sites More sharing options...
jcastick Posted August 25, 2010 Share Posted August 25, 2010 Definitely good news! Quote Link to comment Share on other sites More sharing options...
blacksun1520 Posted August 25, 2010 Share Posted August 25, 2010 Great news Jeff! Enjoy the party with your girls! BS Quote Link to comment Share on other sites More sharing options...
Nessex Posted August 25, 2010 Share Posted August 25, 2010 That is fantastic news. Enjoy this party and the many many more to come Quote Link to comment Share on other sites More sharing options...
Dio Posted August 26, 2010 Share Posted August 26, 2010 Congratulations Jeff! Quote Link to comment Share on other sites More sharing options...
TM2 Dinobot Posted August 26, 2010 Share Posted August 26, 2010 Praise Jesus. Let us know if anything else happens. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.