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Friday, April 30, 2010

Fri April 30, 2010

Hi everyone. We could really use your prayers and positive thinking:
I went and talked with our Neurologist, Dr Le Pichon yesterday to discuss the MRI results. He is really good at explaining things to us in terms we can understand. He showed me the scans, slide by slide, explaining his thoughts. He read Dr. Shores report to me and gave me a copy of the radiology report. Its all really scary, but nothing is definite yet. We are going to wait through the 2 full cycles of chemo (12 weeks) for his next MRI. Dr. Le Pichon said he agreed with Dr. Shore, that waiting would give us a clearer picture if his tumor is growing. I know I told you all that Dr. Shore said he "didnt have a plan" for us if Blakes tumor has in fact grown. Dr. Le Pichon explained what exactly Dr. Shore meant. He meant that this is the only known treatment for Blakes specific tumor. Dr. Shore is doing all that he can. He is contacting St. Judes again to touch base with them and figure out if there is any open protocols that Blake would qualify for now just in case his tumor is in fact growing. I also have sent an email to MD Anderson's Children's Cancer Hospital in Houston, TX. After my Aunt Jean told my dad about it, my dad told me, I asked our neurologist and he said we should definitly get their opinion. They are the #1 cancer center in America. Their website says that their oncologists treat more rare cancers in a single day than most physicians see in a lifetime. Sounds pretty good huh?! So im going after them for a 2nd opinion. Here are a few more facts about them: Leading-edge technologies and therapies not found at most hospitals, they have been eliminating pediatric cancer for more than 6 decades, pioneering therapies that are more effective and less invasice for their patients, and they have innovative therapies generally available several years before they become standards of care elsewhere. So pers olease pray that they will be able to have some new information for us reguarding Blake's tumor. I know we are still waiting to confirm whether or not his tumor is still growing but why not get as much info now?!
Here is what we need prayers for:
**Blakes tumor to shrink/stop growing/or to disappear all together
**For MD Anderson's Childrens Cancer Hospital to have more options for us if Blakes tumor is growing
**For Phil and I to have the strength to get through this hard time-we are doing as well as can be expected-we are trying to stay strong and positive with faith and hope that things will get better!
Thank you all for all your support and prayers-It means the world to us knowing you are all behind us!

Thursday, April 22, 2010

Thur April 22, 2010

Hello! So yesterday our social worker, Jodi, that works with our oncologist called me. She called to let me know that Dr. Shores policy is to wait until our appointment and discuss MRI results. This has been his policy for years. I guess since our RN is new, maybe she didnt know that. I let our social worker know that I was totally fine with waiting if thats Dr. Shores policy, but that I was frustrated because Paige kept telling me she was gonna have results everyday-then not giving me any. I am so glad all that was solved. I was really upset at the whole situation. Ugh it drives me crazy when communication gets messed up. Im just glad we know for next time!!
Today we met with our oncologist Dr. Shore to get Blake's results. I must say I that they might be confusing to some of you. I somehow understand them-even as frustrating as they are. lol Ok-so Blake's MRI looks like the tumor grew-BUT-it was taken at a different angle than last time. Its pretty impossible to get him in the exact same position every time. They warned us about this early on in our MRI's. So due to the angle-the scan they took could make the tumor appear bigger-but it could also be swelling or shadows as well. We really wont know until our next MRI. The scary part is that if the tumor DID grow-Dr. Shore doesnt have a plan for us-so we would have to look into going to another hospital. Maybe St. Judes or another 'cancer' hospital. Im looking at positive as long as I can. Its SO easy to fall into the negative side-and so far Ive stayed as far as I can from the bad. ;) So the good news is that the area where Dr. Hornig did the surgery-where the scar tissue is-looks smaller! Thats good! So now we get to do more waiting. Dr. Shore would like us to wait 2 more chemo cycles, however if Blake's balance/coordination doesnt improve we will be getting an MRI after one cycle. Blake has been falling down a lot again. :( This could be due to the Vincristine-it causes 'slap foot' where his feet slap the ground when he walks. Dr. Shore checked his reflexes today and they arent responing like they should which is a good sign that its the Vincristine and not the tumor causing his weakness. We are also going to go back to the opthamologist to get his vision checked again. Just to make sure he is seeing ok still.
So not really the news we were hoping for-but its not bad news either. We really need all your prayers and positive thoughts! I will keep you all updated!!

Tuesday, April 20, 2010

Tue April 20, 2010

Well, today we were supposed to get the results from Blake's MRI. I waited all morning-even though I wanted to call them 1st thing this morning. Finally at noon, I still hadnt heard from them, I called to find out the results. Paige, our RN with Dr. Shore, let me know she still didnt have all the results. She said she talked to Dr. Shore and they would have them all for us on Thursday. I was SO disappointed. Our apt isnt until 2pm on Thursday. That seems SO far away. I am so axious for the results. I dont understand why they are taking so long this time. She told me it doesnt mean anything, but how can you not think something bad-when I normally have the results at latest the next day. Ugh! We havent had an MRI since December. So I am really having a hard time being patient. After talking to some of the other Rehab moms, they agreed that she should have something-even if its not everything, so I called Paige back after we left rehab to ask her why they werent ready for us. She said she didnt have an answer and that the earliest we would know something would be Thurs. I am so mad. I am nervous as to why it is taking longer this time. I just pray its good news, even though my gut is telling me different. Im just gonna keep praying for good news. Bear with me everyone. Thanks for all your prayers and support. We need them!