I hope you all had a very blessed holiday season! It went so quickly! We packed in a TON of things in the time between Thanksgiving and the New Year! We celebrated Jonny's 12th birthday, got the stomach flu and had to reschedule Caylee's 4th birthday, saw Christmas lights in Brea, had our annual family pictures done, I was the speaker at our church's annual "Christmas with Friends", celebrated my dad's 60th birthday, celebrated Jon's dad's birthday and had a wonderful Christmas celebration with the Adamik side of the family, and went to Lake Arrowhead to spend Christmas in the mountains! (I am probably forgetting things, but you get the drift... we were BUSY!) We actually had a white Christmas!! We all prayed for enough snow to play in, but not a blizzard. Ask and you shall receive! It was an amazing time for our family! A week that no one in our family will forget! With the Christmas season behind us, we are now back in the grind and working our tails off, like usual!
After the hustle and bustle of Christmas was over, we met a new friend! Her name is Kris and she has done so much for our family... it's UNREAL!! She knows a lot about medical billing, social security and getting grants for people in our situation. We started talking and bonded quickly through our love of Christ and our medical whoas. I won't go into what she is going through, but she too has medical issues and knows all about the ins and outs of getting social security (which I have been denied twice already for) and dealing with pushy people who do NOT want you to get the help financially that you deserve and need! She took the mounding pile of medical bills... over $25,000 (this number does not include the numerous copays or the cost of our monthly prescriptions that we have to pay out of pocket each month) and growing and has decided, with no gain to herself, to tackle our financial "Mount Everest"! She is also going after social security to get me the paycheck I deserve from them and she also has contacted countless foundations to help get us grants to help us pay for things such as monthly prescriptions, copays (we have over $150 just in copayments, every 3 weeks), childcare (this would be extra childcare for times when I have appointments or anything medical related and I don't have someone to watch Caylee, after school hours) to help with food, rent, bills in general, for money to do with what we see fit to use it for and also for a dream vacation for our family! (Please pray that these grants go through and we get the help we so desperately need!) In a month's time, she has done more than I could have done myself in a lifetime!! I can't begin to explain the agonizing process of trying to be awarded a grant! They ask you every question you can think of! First of all, she spent days and days searching the web to find foundations that we meet the criteria for. Then she organized all the questions and paperwork we would need to give her in order to apply. Kris has spent HOURS UPON HOURS, filling out paperwork for our family... HOURS of sitting on hold with agencies such as social security office or our insurance company, just to be disconnected after sitting on hold for over an hour! (this has happened to her more than once!) She literally came over with her husband and copied every important document we have such as marriage license, drivers license, birth certificates, insurance cards, all our bills that have gone to collection, wrote down every prescription I take (chemos included) then she took all this home and formed spreadsheets with all our info, so when she fills out the applications for everything, she has all the answers in one spot. She calls me and keeps me updated on how things are going and she will call when she needs more information for a form. She actually started feeling BAD for calling me too much and she told me she would go to Jon with the questions because she doesn't want to stress me out! She was actually apologizing to me about this and explaining herself saying, "I promise, once I get ALL the information, I will never have to ask you for it again! So in the beginning its going to be a lot of phone calls, texts and that sort, but once its all down on the spreadsheet, I can just refer back to that and not have to bother you anymore!" BOTHER ME? Is she joking? I feel terrible for doing this to her! One day I called her just to talk and say hi, I said, "What's wrong? Are you not feeling good?" and she said, "No, I am ok, I didn't get very much sleep because I was up until 5am doing paperwork for this awesome grant that I really want you guys to get!" She is spending more time doing the paperwork, then she would working a full time job! I can't even begin to think how upset her husband and kids are that she is spending her precious time away from her family to do this for us! (Remember she too is sick on SSDI herself!) Then there are the countless trips she has made to the dr's office to demand that all the grant application papers she is filling out will be signed by the doctor in a timely manner. Our doctors charge $15 a SIGNATURE, she did NOT accept this, we went into the doctor's office with a stack of grants that needed to be signed ($145 dollars worth of signatures to be exact) and she went to the top of the chain and complained to the social worker of the oncology department at St Jude, and explained, "They can not afford to pay you the copays, let alone $15 per signature! They can NOT pay this!" St Jude agreed that we would not have to pay for the signatures!!! She is seriously one in a million!!!! So far we have been awarded a couple of grants and in the next few weeks, we will find out if we will be awarded or denied the rest of them! Some of the grants that we have already been awarded are for copay assistance, for some of my chemo and prescriptions.We have also been awarded a grant from a organization called Mommy and Me. They will help us get groceries, child care, they set up fun mommy and me dates (such as tea parties) They are an awesome organization! Needless to say, Kris is a real live angel here on earth who is completely turning our life around! If you would like to help Kris or if you know of an organization that you think would be helpful for our family, you can email her at christiannerocks77@gmail.com
This leads me to the life change that is coming up for me and actually our entire family! While Kris was spending her countless, precious free hours trying to get me the financial help we need, she also spent her time trying to better my health as she was at it! MANY OF YOU have begged me to get a second opinion and to look into other means of treatment. I was just too nervous and scared to do it! One day as I was cleaning the house, I got a call from Kris. She sounded a little nervous as she talked. She proceeded to say, "I did something and I hope you are not mad! If you don't want to do this, I will not feel bad AT ALL! Please don't be upset with me, I just want what is best for you!" THEN I GOT NERVOUS! ha ha ha! She told me that she contacted the Cancer Treatment Centers of America and they think I am a very good candidate and that they think they can really help me out! MAD??? NO WAY!! She gave me the push I needed to start being proactive in my fight against cancer! I would have never been able to do it alone! I am such an anxiety ridden person, that there is no way I could have made that phone call myself. So Kris did a conference call and they told me that they are number 1 in the country in fighting cancer and colon cancer is one of their top specialties! The lady (Linda) from CTCA, told me the first thing was to see if I even qualify for it! They were going to contact my insurance and IF my insurance accepts them, then we will move on to the next step! This first phone call was on a Friday night at around 9pm. On the following Monday at around 12pm, I got a phone call saying I WAS ACCEPTED INTO THE PROGRAM AND MY INSURANCE CONSIDERS IT AN IN NETWORK HOSPITAL!! What that means is, it will be no more money out of our pocket to go to CTCA than it would be to go to St Jude!! (So my annual out of pocket is around $7000, plus copays and prescriptions)
So let me just give you what I know so far. I leave for Phoenix AZ, for 5-10 days (depending on what they can do for me) They may do my evaluation and tell me that St Jude is doing all that can be done for me and to go home and just to continue the treatment with St Jude, without the help from CTCA! Or they can totally help me and change up my treatment to be more aggressive. I leave on the evening of February 12th, which is Josiah's 10th birthday. So with the help of my Facebook friends, we will be taking the kids to Disneyland the day before Jon and I leave. We want to give them a "dream" day. We are hoping to raise enough money to do extra special things at Disneyland such as the Bibbidi Bobbidi Boutique (for Caylee) and the "build your own lightsaber" (for the boys)! We want to be able to give them a carefree day to do whatever their little hearts desire. I want you to take a minute and really think about what my kids go through. They are literally watching their mom slowly pass away and there is nothing they can do about it. They are old enough to KNOW what is going on and they feel like they have to be these brave soldiers for their mom. Josiah absolutely refuses to talk to anyone, I had a little break through with him on Christmas Eve and he admitted he hates watching this happen to me! Caylee is too young to realize that mom's are not supposed to be taking pills all the time, falling asleep in the middle of a conversation or having to go to the doctor constantly. Jonny suffers with nightmares! He is 12 years old and RUNS into our room in the middle of the night in a panic with tears streaming down his face saying, 'I JUST HAD THE DREAM AGAIN THAT THE DOCTOR TOLD ME YOU WERE DEAD!!!" He is old enough to realize, he will one day live that nightmare!! But they are the reason I am going to the CTCA! I have to exhaust ALL avenues to show them that I am fighting so hard to stay on this Earth for as long as I can to be with them!
We have NEVER been away from the kids this long EVER!! The longest we have been away from the kids is 2 nights! The CTCA wanted us to fly out there on January 23rd, but that is just too soon for us and we have too many obligations to take care of before we go! WE ARE NOT TELLING OUR KIDS WHERE I AM GOING UNTIL AFTER WE COME BACK!! So PLEASE do not say anything to them! After we get back and have all the information, we will let them know what is going on. My kids are VERY stressed out and they call me from school just to check on me. They have a VERY hard time when I am in the hospital and Josiah usually begs to stay with me over night when I am in the hospital, so if they knew I was in the hospital in another state for up to 10 days (not being down the street where they could just come and see me), they would be total wrecks! Of course, we will let them know we are going to be gone for about a week, but they don't need the stress of knowing that I will be in pain or sick and they can not physically be with me!
Another thing we know for sure is that the CTCA is paying for Jon and I to fly to Phoenix and stay in their "hotel". The hotel is actually in the hospital, it is COMPLETELY set up like a hotel. It has a flat screen tv, wifi, a regular king sized bed , in room movies, a washer and dryer down the hall and a library to check out books and board games. The food is the hospital cafeteria, which boasts of its own chef. There are plenty of options (as cancer patients will only eat what they crave) and we get our food at a reduced price. (Around $15-$20 per day per person, we pay for our food) The menu caters to you individually as you are assigned a nutritionist who creates a food plan to attack the cancer. Each persons food plan is different! There is a shuttle that will take us around to different shopping malls, museums and restaurants around the city.
The first 3-5 days are evaluation days. This is where they poke, prod, do scans, MRI's, and other tests to really get a full work up on you. During this time, they determine whether they can help or not! If they can not help me, I will be sent home after 5 days. If they think they can even just prolong my life 1 month, I will start my new treatments and do a round of chemo while I am there! CTCA have the newest and best machines in the country. The are also on top of the newest chemos and other treatments that is out there!
The CTCA does NOT replace St Jude or my oncologist! They work WITH them! They work hand in hand to give me the best treatment possible. So, if all goes as planned, I will return home after about 10 days and they will contact St Jude and send my new treatment plan to St Jude to have them administer my new regiment to me. I will continue to do my chemo treatments at St Jude. Then every 3 months or so (maybe even less) I return to Phoenix (I will drive and will be reimbursed mileage) for more tests, scans and evaluations! They want to make sure what they are doing is actually working and if its not, they will adjust my meds accordingly.
This is pretty much all I know for now! I will keep you all updated as much as I possibly can! I don't know how I will be feeling, so if I can not update the blog, I will find someone who can! I am sure I will NOT be feeling as good as I am now, since I am only on maintenance chemo now, not attacking the chemo, just keeping it at bay. So, I am sure the new chemo treatment will be A LOT more aggressive!
PLEASE CONTINUE TO PRAY FOR ME AND MY FAMILY!!! This is a scary but exciting time for us! God has been so good to us and I am so thankful for all my blessings, my friends, the prayers and the gifts we received over the last 2 and a half years! God has held me near to him during this trial. I am so thankful for each day he has given me with my family and all of you! KEEP PRAYING, GOD IS LISTENING!! We love you and you all mean so much to us! NOW IT'S TIME TO KICK CANCER IN THE BEHIND!! (Sorry if this started not making sense, my pills are kicking in!)
