Today, brings new beginnings. I wish that I could say that we have better news, the truth is, our news may not be better. around 12 p.m., the doctor entered the room to tell us that Daniel does not qualify for the study, we once thought that he would. Daniel's genetic mutation that is causing the problem is the Philadelphia chromosome. I want you to know that i am trying to explain this in a way that most people will understand, so bare with ne. The Philadelphia chromosome issue means that without a bone marrow transplant, Daniel's remission will not be successful. Tonight, we start chemotherapy. I am not sure how many rounds daniel will undergo before the bone marrow transplant can take place. The first person that I'll be given the shot at a possible match for Daniel is his sister Erin. She is very much excited about the chance to help him out. As a matter of fact, the paper work will be sent in tomorrow to get this started. If she is a match- great! If not, they will go to what they call a "mud bank", to look for possible matches. Sometimes, there will be a match. If there is not one there, than other routes to identify matches will be discussed.
On another note, we are excited to begin the chemo tonight. It seems like this is a huge waiting game. We are learning how important patience can be. Daniel has had a lot of visitors in the past few days. He has enjoyed each and every person who has stopped in. We are so touched! Today, his blood pressure has been low, and he tires easily. Other than that, he still enjoys pestering the nurses, especially the ones that he really likes! No fever, just tired! His first round of chemo will last 4 days. His side effects should be pretty mild. Most likely nausea and body aches. But, there are great meds out there that will help with any that should occur.
It is truly starting to sink in that our life is forever changed. Daniel will never be completely cured of this disease. He will always be in remission. There will always be dr appointments to attend, St. Louis will forever be a part of our lives. How do you tell your children this? I am struggling with that question more than anything. If someone can for me any suggestions, please, I am begging you! Daniel has such positive energy. He believes that if there is 1% chance of survival- he has a chance and that he is that 1%) We all know that he will beat this disease! it is just going to take time. I can't wait to get him home. Oh yeah, you know that trip that I was going to make home this weekend? The girls are actually coming up to see us! We can't wait to wrap our hands around those girls. Daniel will not be able to- because of the chemo treatment. Please continue to think about us, as our road ahead could be a little curvy at times. All i can say is, bring it on leukemia!
Kristin, **hugs** God is going to grant you amazing strength and wisdom during this time. I pray for yall daily and was just sorting through some humorous websites to send to Daniel via Barnes Jewish's patient email. Disappointing to hear about him not qualifying for the clinical trial however, God has a reason for everything and when one door closes he will open another one! Prayers going up for yall! Keep your chins up Presley family!
ReplyDeleteKristin,
ReplyDeleteJust read your post. It always brings tears to my eyes as I read them to Paul..I enjoyed our long talk and our tears that we had today. You are a strong person. Please let Daniel know that we are gonna make it up there soon.
Remember what I told you today, I am here to lend you my ear and my shoulder, so please dont forget it ok??
Love yall
Kristin, Oh how I want to hug you right now. I have been right where you are right now. Well, not you, but Daniel's. I am a friend of Shari Eads, my name is Erica Griffin and I am a breast cancer survivor. I was mis-diagnosed at the age of 28, and finally made my way to STL and Siteman CC/Barnes-Jewish in September 2008 for a diagnosis of Stage III invasive breast cancer. I was 30 years old with no family history or risk factors, we were completely blindsided.
ReplyDeleteMy husband, Jack, and were (and still are) HS sweethearts and we have 3 children, Tyler 15, Zachary 13, and Katie 7. From the moment we heard the word "cancer," our world was completely turned upside down and I thought we would never find our feet again. I ached for our kids' childhood years that would now be filled with trips to St. Louis, drs appointments, lab work, tests, treatments, and surgeries.
But through the grace of God, we made it through and now we stand on the other side of treatment, sometimes looking back wondering how we made it. Our faith and our family and friends made our journey possible for us, and God heaped a strength on us that we never knew we had.
So I want to tell you, first of all, you are in the best place ever to receive treatment. My oncologist said at my first appointment, "We're not going to treat you, we're going to cure you." Siteman/WashU/Barnes-Jewish is the best places to be as they see some of the worst cases of everything...and CURE IT! I am here, now 33 years old and cured. Yes, we go for our checkups often but they serve as reassurance that I am whole and healthy. Second, please know that what you are going through now is the absolute worst part of the whole thing. I'm talking about the set-up, waiting, deciding, testing part of your journey. I remember waiting for one of my doctors to call with test results one day and I did nothing but sit by the phone from 6am until 530pm that evening when she finally got my results and called; I didn't eat, drink, or move...it was gut-wrenching. So I've been there where you are and honestly, it sucks, but belive me when I say it will pass, and you will begin to move forward. And forward means you are one step, one day, closer to YOUR CURE!!
I blogged throughout our journey at
http://ericaexercisesneats.blogspot.com and of course you are welcome to check it all out. If you go to the posts labeled "breast cancer" you will find posts and pictures from the beginning of my story.
I also made a video slide show of our journey and it is on YouTube here:
http://www.youtube.com/watch?v=8bmE_sYlUos
Please feel free to email me, if you need anything, or have questions, comments, or need a virtual hug. Heck if you need a real hug we will be there tomorrow actually! I'm scheduled for a bone scan and an oncologist checkup tomorrow. Hang in there, friend. Trust in God, lean on Him, and He will hold you. Our favorite verse throughout our journey with breast cancer is Mark 5:36 "Don't be afraid, just believe."
Love, prayers, and big (((hugs))) to you and your family. Keep your head up. You guys have got this...and God's got you.
Sincerely,
Erica
Kristin,
ReplyDeleteI am sharing your blog with many that are calling to check up on you and your family. There are many prayers heading your way!!! You are right, there have been people that lived around here years ago call and ask about Daniel. So many that I should have made a list for you. Kas has been visiting with the girls daily! Kelsey sends her love and prayers. If there is ANYTHING that Shawn and I can do just let us know. I am sending big hugs and lots of love and prayers. Talk to you soon.