Friday, January 25, 2008

Good News..... but still uncertain.

Went to Primary Children's yesterday. They did both MRI's on spine and brain, all looked clean!!!! That is great news, except no one knows why Marcus is having pain. I really want to believe that it is just the Osgood-Shlatter (growing fast so the ligaments pull and cause pain) but I just feel deep down that something is wrong. I mean, obviously it is because Marcus is in a lot of pain and it seems to get worse. The Aleeve he has been taking really doesn't help much anymore and he just hurts all the time. I have had people tell me that I am just "looking for trouble" and that I am just jumping over every little thing. I am sorry, but I am a Mother and I am a complete believer in a "mothers intuition". Ever since Marcus's last MRI I have felt on edge and not understanding why I am just not feeling the peace I have been praying for. Well, part of it I found out today.

Our Oncologist that we saw yesterday is a new Dr. they hired back in September. She went over all his symptoms and then went down and looked at his MRI's. Came back saying they looked great. So she suggested going down and having his knees x-rayed on our way out. Today, she was nice enough to call John at work and tell him that she looked at his x-rays and off hand she can't see anything that would be causing the pain, but she is not a bone specialist. Then she goes on to say... "Oh by the way, did they tell you last november that his last MRI showed that his ___ (can't rembember what its called, but its the lining of the brain underneath the skull) has thickened quit a bit?" NO WAY!!!! No one ever told us that. She said that she didn't notice it until she went back and looked at his past scans and spent some time comparing them. It showed up in novembers scan and looks the same right now. If it gets any thicker they will have to do surgery. Of course they didnt give John any information on the signs or symptoms to look for if it does. Now, I know this has NOTHING to do with his knees hurting, but this really makes me wonder if anyone took the time (since Dr. Bruggers is gone) to really look at his scans and compare. This also makes me wonder if they are missing anything. I really am just sooooooo ANGRY about this, I can't even tell you. I am going to do everything I can to get on this and nag anyone and everyone to get his knees taken care of and also to look at his scans. I just can't believe that this is happening. I know someone from my Ped. Brain Tumor support group who has had bad experiences with them as well. It has taken them 6 months to finally tell her that her son needs a 3rd opinion on his pathology!!! I tell you, I am ready to pack up and go to another Dr.... SOMEWHERE... ANYWHERE because my trust in these Dr.'s is about out. Like I have heard a 1,000,000 times... no one loves my children as much as me and I am the only one who can speak for them and get them the treatment they need and deserve.

Ok, off my soap-box. Just had to "vent" a little, and it will probably not be the last time either.

Sunday, January 20, 2008

Tucson, Arizona.

Just got home today. Marcus went to his band camp and University of Arizona. He left wednesday, spent some time with Nanny (John's Mom) and a little time with Matt and Nancy (John's brother and his wife). He spent all day friday and saturday at the camp. I flew out friday night and spent the day with my parents, my 2 sisters and my brother and their families. We all made it to the concert on saturday evening. I think we had the biggest crowd for just one student. I love to hear him play. We ordered a CD and I video-taped it as well. He looked so handsome up there all dressed up and right on the end where we all could see him.
I am having a "deja-voo" just writting this. I have waited to post anything because I waited to tell Marcus until we got home from our trip. He has been having a lot of knee pain, so much that I notice him walking like he is in pain. He also has had his legs "give out" on him a few times and the other day, his leg went numb just sitting in the car for a 10-minute drive. I called the Oncologists office and they took forever in calling me back because their whole office is a MESS. Marcus's doctor, Dr. Bruggers is still on personal leave and probably won't be back until MARCH! I tried to get a hold of the BT specialty nurse that we know so well, and after 2 calls, I found out that SHE is out on personal leave as well!! I got so frustrated I called our good friend, our Primary doctor, Dr. Duke. Not only is he our doc, he has been my therapist, voice of reason and someone we can call on for anything. He takes our phone calls no matter where he is. So I call him and he was at lunch, he calls me back and I answer his call in the stupid bathroom because we can't have them out on the floor. So I tell him whats going on, and I ask him what it could be and if I should be concerned about it. All he did was take a deep sigh and said... "Karen, you and I both know what it is". And because I am the mom I started thinking of anything I could, like side-effects from the chemo or radiation, growing pains, ANYTHING but that!!! Then I could feel a drop that landed hard in my stomach. He said, Karen... you and I both know what a horrid thing this cancer is, and it has probably spread somewhere that is putting pressure on those nerves. This thing is eventually going to take his life someday, and we just have to keep trying new things to keep him here as long as we can or as long as he wants to keep on fighting. There is no cure for this, but we can do the best we can with what we have. I suggest you just call up Oncology and make an appointment for the next week or so and have an MRI done on his spine and brain. " I agreed and thanked him. There I was in the dumb bathroom at work. I looked up at myself and the tears just came. I couldn't stop, I went in the stall and bawled. Then I had to snap out of it and go out to work, but I just couldn't stop the waterworks for NOTHING. So I went home and took some xanax to pull myself together. Afterall, it was Jacksons birthday and I had to put a smile on my face and have a PARTY. We decided not to tell Marcus until he got home so he could enjoy his time. I told him on the plane home and he took it well. He is just staying positive and enjoying being home with his brothers.

Sunday, January 13, 2008

"Who busted a grumpy?"

Yes, this is what I hear on a regular basis at our house lately. With a house full of boys, what do you expect? For those not familiar with this term, it is a new (not sure if its really new, but new to me) way of asking," who let wind?" Yes, I am not really sure why boys are sooooo entertained by this disgusting bodily function, but it can really get out of control. Its so much fun to be out-numbered.......... NOT! In church I look around and see these cute little girls in frilly dresses, bows in their hair, nails painted and wonder... what would that be like? But you know, if it was MY little girl, with all these boys, (and yes, without the boys, I admit) she would be just like my monster boys and fit in quite well. I held my own with the boys when I was growing up, and gave my parents enough grief to make up for most of the other kids put together. So when I talk about Jackson, I do so with love, because.... like John would say to me..."he is soooo you, Karen". Yes, I admit it, but just not to John.... I want him to think I am a little ANGEL..... shhhhhhh, don't tell.
Speaking of Jackson, he turns 6 years old day after tomorrow! WOW... can't believe my baby is so big. Hopefully we will be getting him a bike, but with all the snow we are getting, not sure where he could ride it until after Noah's birthday in April! He really needs one though.
We are also getting ready for Marcus to leave on Wednesday for Tucson, Arizona!!!! He is so excited! He will be going to a special Band Camp there where he will get an opportunity to try out for a scholarship. Plus he will be meeting kids from all over the west and performing with them. I will go too, but not until friday after work, but I am thrilled that I get to go too.

Thursday, January 03, 2008

Happy New Year!

What a difference a few days make. We have been so fortunate to have some fun things come to our family. The Make a Wish Foundation called and want to grant Marcus's wish. When I first asked him what his wish would be, he pointed to his poster of an F-16 plane. He loves planes and wants to fly the military planes the most. I know that is a wish that might be really hard to grant, but wouldn't that be awesome?
Also Marcus will be going to Tucson in a couple of weeks for an Honors Band camp at University of Arizona. He will fly down the 16th of January and start camp the 17th. I will fly down as well, but that will be Friday after work. He will have a concert Saturday and we both will fly home on sunday. He is really excited about that as well. We have been so blessed to be able to have these opportunities come up for him.
I have really felt so comforted lately. I have had some wonderful friends and family give me some great words of comfort and support. That has meant so much to me. I am so grateful to have so much love and support around me and my family. I just hope I can give it back to others.
It also has been nice to be home most of the whole Christmas Vacation with the boys. It has been so nice to spend some quality time with them. Today they get to go to school and I get to have some time to myself. Wow.... what will that be like? Anyway.... all is good today!