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!)
Sunday, January 19, 2014
Tuesday, December 3, 2013
JOIN POSH NOW!!
I had to share this!! I would be greedy if I didn't! I started selling Perfectly Posh in September! I went in blindly without knowing much about it! I am excited to tell you that I have made money for my family, new friends and have been able to share my testimony at the end of my Posh parties! God is so good! He is in every detail of my life, including my new business! I encourage you to join my team NOW! The kit is the best one I have seen and there is a new 90 day training academy called "Posh Prep Academy" which walks you through everything and helps you grow your business! It's only $99 to join and that includes over $280 in Posh's number 1 selling products AND the business essentials to get your business going! They have included 2 of every product to do with what you would like, sell one and use one for yourself, use one for samples and display the other, whatever you want to do... Posh will let you do! THIS IS YOUR BUSINESS!!
Go to www.perfectlyposh.us/christianne to JOIN MY TEAM TODAY!! This offer/kit ends December 31st!
Go to www.perfectlyposh.us/christianne to JOIN MY TEAM TODAY!! This offer/kit ends December 31st!
Wednesday, November 27, 2013
A very Happy Thanksgiving!
http://OK... I am a big wimp! I backed out of the MRI. This is the first time I denied a test or any kind of treatment. I prayed long and hard and had a peace about not doing it. Dr P told me that there was really nothing more he could do for me that he isn't already doing. So why bother putting me through even more stress by doing the MRI? So I called and cancelled. I decided to try to help my back out a little by cutting down on lifting things, which included my almost 4 year old, who is the size of a 6 year old! She still climbs up into my lap all the time, but picking her up only happens when it is necessary.
So why am I so cheerful, when I am usually a huge grump on chemo days... I got GREAT news today!! Let me go back a couple of weeks. Last chemo treatment, my blood pressure was through the roof!!! Like 189/95 high. I didn't really think anything about it at the time. I have struggled with high bp for a while, so it was nothing new. I knew in order to have the Avastin, my bp would have to be in a normal range. Avastin causes high bp, so if you start out with high bp, you can imagine what could happen. So, I go to infusion and my infusion nurse says that she doesn't think I should get the Avastin bc she could not get my bp to lower. By this time, by body has went into defense mode. What this means is, most cancer patients suffer with a condition that makes them either very sleepy or very sick when they think about or go to chemo. I fall asleep! I don't just mean dozing off... Full blown snore fest. While in the chair, I hadn't even received any form of meds yets, and I was completely out. I did sort of wake up to my nurse raising my arm above my head while taking my bp and it still wasn't going down. After many attempts of trying everything to get it to go down, it finally worked. So I get plugged in and I receive the chemo. I get home and sleep the day away. That night (around 2am) I feel funny. Blurry vision, slight headache and just weird. I take my bp and it is 198/105! We call the nurses advice line and leave a message and never hear back. Long story short, after 2 days of calling the dr multiple times with no return call, calling my chemo nurse and the nurses advice line, we get a call back from the dr's front desk. I answer and she tells me I need to come in for a CT Scan as soon as possible. At this point, I am on the verge of a mental break down!! I scream into the phone, "WHAT THE HECK DOES A CT SCAN HAVE TO DO WITH HIGH BLOOD PRESSURE?" She was taken back because I am sooooo not that person who yells at someone for no reason. She tells me to hold on while she talks to the dr. She says (in a very snarky tone) "Well, he told you not to be surprised that he would order a ct scan if you had a jump in numbers!" My head was spinning at this point... What the heck was going on? Then she said, "Oh and the dr has sent you a new prescription of blood pressure medication and it is waiting for you at the pharmacy." I make the appointment for the CT scan and curiosity gets the best of me. I tell Jon to call back my chemo nurse and ask what my numbers were. He calls her and she says, "Are you sure you really want to know?" That can't be good! So Jon told her to let us know. She said my numbers jumped from 160 to 201.9 in a matter of 3 weeks time. So, they again tell us, "We need to see how much the cancer has grown and/or spread." I have NEVER been so nervous about a ct in all my life. I don't know what made this one so much different than all the other times. But, I AM SCARED TO DEATH. I do the ct and the tech tells me that they put a rush on my orders and the dr will have it in the morning. The next 24 hours were the longest in my ENTIRE life. We call the dr 3 times that day with no response. Finally at 2pm, his head nurse calls me. She said, "Ok Christianne, Dr Paneres says everything looks good! There is no new growth or spreading, so we are going to keep going with the regiment you have been on and we will see you in a couple weeks." I just start crying hysterically on the phone, so much so that I freak Helen (my nurse) out! I said, "WAIT WHAT?" She said, "didn't you hear me? You are fine! Whats wrong?" So I went on to tell her the whole story leading up to that point and she said, "If I am the one calling you, just know it is good news! I can't tell people bad news anymore, I would end up crying with the patient!" So now I know if dr P calls... that is not good!
Fast forward to today, I go to my appointment and he lets me know once again, everything is good! He says so good in fact that I now only see the dr every 6 weeks instead of every 3 weeks. He said it is pointless to go by my CEA numbers because they are just not accurate for me. So with that I push the envelope a little bit. I told him my next chemo lands on my daughter's birthday and if I PROMISE to still take my chemo pills, could I please skip my infusion for the month of December. He said YES!!!!! So this is a very HAPPY Thanksgiving and an even better CHRISTMAS! I do not have to go in for chemo until January 7th of 2014! :)
So, I have to brag a little about my Posh "career". I have hit ALL my goals, every month. I have received 2 awards already and have 2 more on the way. I have decided that since I am doing so well, that I am pretty much going to just do outside/online orders and only 1 event for the month of December. If you are thinking you would like to start earning a little more cash, I URGE you to try Posh! The products honestly sell themselves and they are all natural and safe for everyone. I have 3 parties scheduled for January so far and if you would like to learn more about Posh or want to schedule a party just hit this link! http://www.perfectlyposh.us/repsites/frm_bridge.aspx?bridge=JOIN&id=4710
YOU WILL NOT REGRET IT! If the link is not lit up and you can't click on it, copy and paste it! :)
So why am I so cheerful, when I am usually a huge grump on chemo days... I got GREAT news today!! Let me go back a couple of weeks. Last chemo treatment, my blood pressure was through the roof!!! Like 189/95 high. I didn't really think anything about it at the time. I have struggled with high bp for a while, so it was nothing new. I knew in order to have the Avastin, my bp would have to be in a normal range. Avastin causes high bp, so if you start out with high bp, you can imagine what could happen. So, I go to infusion and my infusion nurse says that she doesn't think I should get the Avastin bc she could not get my bp to lower. By this time, by body has went into defense mode. What this means is, most cancer patients suffer with a condition that makes them either very sleepy or very sick when they think about or go to chemo. I fall asleep! I don't just mean dozing off... Full blown snore fest. While in the chair, I hadn't even received any form of meds yets, and I was completely out. I did sort of wake up to my nurse raising my arm above my head while taking my bp and it still wasn't going down. After many attempts of trying everything to get it to go down, it finally worked. So I get plugged in and I receive the chemo. I get home and sleep the day away. That night (around 2am) I feel funny. Blurry vision, slight headache and just weird. I take my bp and it is 198/105! We call the nurses advice line and leave a message and never hear back. Long story short, after 2 days of calling the dr multiple times with no return call, calling my chemo nurse and the nurses advice line, we get a call back from the dr's front desk. I answer and she tells me I need to come in for a CT Scan as soon as possible. At this point, I am on the verge of a mental break down!! I scream into the phone, "WHAT THE HECK DOES A CT SCAN HAVE TO DO WITH HIGH BLOOD PRESSURE?" She was taken back because I am sooooo not that person who yells at someone for no reason. She tells me to hold on while she talks to the dr. She says (in a very snarky tone) "Well, he told you not to be surprised that he would order a ct scan if you had a jump in numbers!" My head was spinning at this point... What the heck was going on? Then she said, "Oh and the dr has sent you a new prescription of blood pressure medication and it is waiting for you at the pharmacy." I make the appointment for the CT scan and curiosity gets the best of me. I tell Jon to call back my chemo nurse and ask what my numbers were. He calls her and she says, "Are you sure you really want to know?" That can't be good! So Jon told her to let us know. She said my numbers jumped from 160 to 201.9 in a matter of 3 weeks time. So, they again tell us, "We need to see how much the cancer has grown and/or spread." I have NEVER been so nervous about a ct in all my life. I don't know what made this one so much different than all the other times. But, I AM SCARED TO DEATH. I do the ct and the tech tells me that they put a rush on my orders and the dr will have it in the morning. The next 24 hours were the longest in my ENTIRE life. We call the dr 3 times that day with no response. Finally at 2pm, his head nurse calls me. She said, "Ok Christianne, Dr Paneres says everything looks good! There is no new growth or spreading, so we are going to keep going with the regiment you have been on and we will see you in a couple weeks." I just start crying hysterically on the phone, so much so that I freak Helen (my nurse) out! I said, "WAIT WHAT?" She said, "didn't you hear me? You are fine! Whats wrong?" So I went on to tell her the whole story leading up to that point and she said, "If I am the one calling you, just know it is good news! I can't tell people bad news anymore, I would end up crying with the patient!" So now I know if dr P calls... that is not good!
Fast forward to today, I go to my appointment and he lets me know once again, everything is good! He says so good in fact that I now only see the dr every 6 weeks instead of every 3 weeks. He said it is pointless to go by my CEA numbers because they are just not accurate for me. So with that I push the envelope a little bit. I told him my next chemo lands on my daughter's birthday and if I PROMISE to still take my chemo pills, could I please skip my infusion for the month of December. He said YES!!!!! So this is a very HAPPY Thanksgiving and an even better CHRISTMAS! I do not have to go in for chemo until January 7th of 2014! :)
So, I have to brag a little about my Posh "career". I have hit ALL my goals, every month. I have received 2 awards already and have 2 more on the way. I have decided that since I am doing so well, that I am pretty much going to just do outside/online orders and only 1 event for the month of December. If you are thinking you would like to start earning a little more cash, I URGE you to try Posh! The products honestly sell themselves and they are all natural and safe for everyone. I have 3 parties scheduled for January so far and if you would like to learn more about Posh or want to schedule a party just hit this link! http://www.perfectlyposh.us/repsites/frm_bridge.aspx?bridge=JOIN&id=4710
YOU WILL NOT REGRET IT! If the link is not lit up and you can't click on it, copy and paste it! :)
Tuesday, October 22, 2013
Time flies... when you are busy!!
I seriously don't know where to begin... Lets go back to this past summer. I took the Summer "off" from chemo to be somewhat normal with the kids. We did A LOT! We went on vacations to the lake, we played at the splash park, 3 Vacation Bible Schools, Knott's Berry Farm and much more! I was only doing my chemo pills which I really have no side effects from. When the kids went back to school, I had a CT Scan and the dr warned me that my numbers went from the 60's to 160! So, we were expecting there to be growth and maybe even spreading, but it was worth it for the time I had with my kids. The results came back and everything was the same! It hadn't grown even a little bit. So he added Avastin to my regiment. He said I will be having CT's every 9 weeks and I can stay off the chemo that makes me very sick, until my cancer starts growing/sharing. PRAISE GOD FOR THAT!
I have been dealing with a lot of back/leg pain recently. It is so bad that I have to have my pain pills next to my bed and I take them as soon as I wake up and wait for them to kick in before I can get out of bed. It is the lower lumbar region. I told the dr about it and let him know I upped my pain pills myself and I was (am) still in pain. He said he doesn't think that it is cancer related. He said that I need to remember my body isn't what I want it to be and I need to slow down. (BOY! He just doesn't get me, does he?) He thinks that it may be a slipped disc. So, I have a 2 and a half hour MRI on Thursday the 24th. I am really nervous to do an MRI because I am pretty claustrophobic! I hate CT's and I am only in the machine for about 15 minutes! I am thinking of backing out. I think I may rather live with this horrible pain than do the test! So pray for that for me too please.
My hair... Since going off the chemo, my hair is growing back pretty quickly. In fact, I even just had a hair cut to "shape it up" a little bit. It was starting to look too Simon Cowell for me! I am going to keep it short because eventually I know I will go back on the chemo and more than likely lose it again. This time it may not be such a shock because it is short to begin with.
We are still really struggling financially... My mom recently had a tumor removed from her spinal cord. So she can not take care of the kids the way she was before, so Jon is missing more work than ever. We are over $30,000 behind what we usually are this time last year. I was sick of sitting by, letting life pass me by and being the cause of my family losing out on so much because I am sick and Jon has to take time off to take care of me. So, pretty much blindly, I joined the company PERFECTLY POSH! If you are on Facebook, you are pretty much sick of hearing about it from me! Sorry about that, but I just love it and it truly has changed my life! I am doing things I have not ever done in my life! I have actually gone to a store by myself without any anxiety, I stand in front of people for about 2 hours talking about our products and giving people facials and answering questions. I know God is using Posh for me to reach out to people and give my testimony. I pray that God always gives me an opportunity during my parties sometime to talk about what God is doing in my life. I feel so alive doing this! Not only do I get some "me time", I am making money for my family, meeting new people and get to witness to them! If you would like to check out my website and our all natural products, go to www.perfectlyposh.us/christianne So far I have had 2 parties (and 3 more already booked) met 2 goals that the company has set for its consultants, I hit enough in sales that I am getting a promotion and a raise, I have 3 team members who have signed up under me, I along with my sister have a charity event coming up to raise money for a little girl who was born with NKH and I went to a convention in San Diego! All within the last 40 days! I love Posh and honestly think that God placed it in my lap and great things will come from it!
On the kid front, they are doing well! Caylee has started at Head Start and goes every day from 8am to 11:30am. It is such a blessing because they feed her breakfast and lunch and she is getting the interaction with other kids her age, while getting ready for Kindergarten! She is my little Posher. She is a real girly girl and can't keep her hands off my products. For Christmas, I am going to make her a little Posh basket that is just for her. She loves to try everything out and she helps me make my samples to give out to people! She has not had 1 UTI since her surgery and is such a happy and energetic child.
Joey, he is still having a rough time with things. He has been to 5 different counselors. The latest one was through the school and they called to let me know that HE decided he didn't want to go anymore and she also said there was really no point because she can not get him to open up at all! (Exactly what the last 4 counselors have told us) He is such a sweet boy and he is very attached to me. He is also having a little bit of a hard time with mommy "working". He knows how to pull at my heart strings and told me that all I care about is Posh and working! I explained to him that I work at home to be close to him and he can be with me the whole time I am working and even help me at times! That made him feel better and he hasn't complained since then.
Jonny is back in soccer with Jon as his assistant coach! Like Jon needed one more thing on his plate, but it has been awesome for both of them! They are bonding even more through it and they both have an outlet to get their frustrations out! He goes to counseling through his school every Tuesday and he really likes it. He is a full blown pre-teen monster!! Oh my!! I was not ready for it! LOL!! He is at the stage where his friends know more than we do and he knows WAY MORE than we do! He thinks it hysterical when we let him know that we know what is best for him. We get a LOT of.. Well Jacob said.... UGH!! Sometimes its more than I can handle! I just pray and give it to God and explain to him WE want the very best for him and we would NEVER steer him in the wrong direction. Our new dilemma is when and what do we tell him about "the birds and the bees"!? I know he is still pretty innocent about knowing things in that department so I feel like if we fill his head with things, then curiosity will get the best of him! I obviously do not want him learning from his friends anything we don't want him to know, but I am not stupid and don't want to be unrealistic, that is going to happen if we don't teach him how to respect women first. Jon and I did a daddy/daughter date and a mommy/son date one night. Jon brought Caylee flowers and the boys got me and my mom flowers. On our date, I taught the boys to open the car door for women, bring them flowers before the dinner, pull out a woman's chair and be respectful at the dinner table at all times!
I do have a very important prayer request. Our 6 year old next door neighbor, Dylan, was diagnosed with Leukemia! He is having chemo every 4 DAYS! His face is a little swollen from the steroids, he is SO SICK FROM THE CHEMO!! Last night, I was in my room and I heard screaming and crying. A sound I will never forget. I dropped everything and started yelling for everyone to run outside something is WRONG!! I honestly thought one of my boys were hit by a car or something! My dad, Jon and I run outside to find Lisa (Dylans mom) rocking Dylan in her lap as he is screaming, "MOMMY MAKE ME BETTER, MAKE IT STOP!!! I AM SO SICK MOMMY, I CAN'T DO THIS!!" I can not describe the horrors of chemo. Its unlike ANYTHING I have experienced in my life. She (his mom) was just sobbing and rocking him. She said every night at around 6pm, he just melts down like this and she doesn't know how to console him. She thought letting him sit on the front porch and get some air would help him. I told her (begged her) to take a walk around the block and clear her mind and just get out. She told me she would NEVER leave him. I, as a mom, get that completely. Cancer is from the devil... thankfully they caught the leukemia pretty quickly and he has a 95% chance of being completely cancer free by the end of November! So please please pray for Dylan and his whole family! I am so thankful that it is me and not my kids who are sick! I would do anything to take Dylan's pain away! Lisa is my hero!! She is an amazing mom, she always has been. But to have to endure what they are going through is unfathomable!
Well, I am going to wrap this up, Jon is already snoring away! LOL! I better get to sleep! Morning comes too early in this household!
Keep praying, God is listening and is really keeping us together!! But like the dr constantly likes to remind me, I can be doing wonderfully one day and 2 weeks later, I could be gone! Pray for my CT scans to keep coming back good, pray for my kids and husband to keep their sanity, pray for my MRI and pray for little Dylan! Thanks everyone!!
I have been dealing with a lot of back/leg pain recently. It is so bad that I have to have my pain pills next to my bed and I take them as soon as I wake up and wait for them to kick in before I can get out of bed. It is the lower lumbar region. I told the dr about it and let him know I upped my pain pills myself and I was (am) still in pain. He said he doesn't think that it is cancer related. He said that I need to remember my body isn't what I want it to be and I need to slow down. (BOY! He just doesn't get me, does he?) He thinks that it may be a slipped disc. So, I have a 2 and a half hour MRI on Thursday the 24th. I am really nervous to do an MRI because I am pretty claustrophobic! I hate CT's and I am only in the machine for about 15 minutes! I am thinking of backing out. I think I may rather live with this horrible pain than do the test! So pray for that for me too please.
My hair... Since going off the chemo, my hair is growing back pretty quickly. In fact, I even just had a hair cut to "shape it up" a little bit. It was starting to look too Simon Cowell for me! I am going to keep it short because eventually I know I will go back on the chemo and more than likely lose it again. This time it may not be such a shock because it is short to begin with.
We are still really struggling financially... My mom recently had a tumor removed from her spinal cord. So she can not take care of the kids the way she was before, so Jon is missing more work than ever. We are over $30,000 behind what we usually are this time last year. I was sick of sitting by, letting life pass me by and being the cause of my family losing out on so much because I am sick and Jon has to take time off to take care of me. So, pretty much blindly, I joined the company PERFECTLY POSH! If you are on Facebook, you are pretty much sick of hearing about it from me! Sorry about that, but I just love it and it truly has changed my life! I am doing things I have not ever done in my life! I have actually gone to a store by myself without any anxiety, I stand in front of people for about 2 hours talking about our products and giving people facials and answering questions. I know God is using Posh for me to reach out to people and give my testimony. I pray that God always gives me an opportunity during my parties sometime to talk about what God is doing in my life. I feel so alive doing this! Not only do I get some "me time", I am making money for my family, meeting new people and get to witness to them! If you would like to check out my website and our all natural products, go to www.perfectlyposh.us/christianne So far I have had 2 parties (and 3 more already booked) met 2 goals that the company has set for its consultants, I hit enough in sales that I am getting a promotion and a raise, I have 3 team members who have signed up under me, I along with my sister have a charity event coming up to raise money for a little girl who was born with NKH and I went to a convention in San Diego! All within the last 40 days! I love Posh and honestly think that God placed it in my lap and great things will come from it!
On the kid front, they are doing well! Caylee has started at Head Start and goes every day from 8am to 11:30am. It is such a blessing because they feed her breakfast and lunch and she is getting the interaction with other kids her age, while getting ready for Kindergarten! She is my little Posher. She is a real girly girl and can't keep her hands off my products. For Christmas, I am going to make her a little Posh basket that is just for her. She loves to try everything out and she helps me make my samples to give out to people! She has not had 1 UTI since her surgery and is such a happy and energetic child.
Joey, he is still having a rough time with things. He has been to 5 different counselors. The latest one was through the school and they called to let me know that HE decided he didn't want to go anymore and she also said there was really no point because she can not get him to open up at all! (Exactly what the last 4 counselors have told us) He is such a sweet boy and he is very attached to me. He is also having a little bit of a hard time with mommy "working". He knows how to pull at my heart strings and told me that all I care about is Posh and working! I explained to him that I work at home to be close to him and he can be with me the whole time I am working and even help me at times! That made him feel better and he hasn't complained since then.
Jonny is back in soccer with Jon as his assistant coach! Like Jon needed one more thing on his plate, but it has been awesome for both of them! They are bonding even more through it and they both have an outlet to get their frustrations out! He goes to counseling through his school every Tuesday and he really likes it. He is a full blown pre-teen monster!! Oh my!! I was not ready for it! LOL!! He is at the stage where his friends know more than we do and he knows WAY MORE than we do! He thinks it hysterical when we let him know that we know what is best for him. We get a LOT of.. Well Jacob said.... UGH!! Sometimes its more than I can handle! I just pray and give it to God and explain to him WE want the very best for him and we would NEVER steer him in the wrong direction. Our new dilemma is when and what do we tell him about "the birds and the bees"!? I know he is still pretty innocent about knowing things in that department so I feel like if we fill his head with things, then curiosity will get the best of him! I obviously do not want him learning from his friends anything we don't want him to know, but I am not stupid and don't want to be unrealistic, that is going to happen if we don't teach him how to respect women first. Jon and I did a daddy/daughter date and a mommy/son date one night. Jon brought Caylee flowers and the boys got me and my mom flowers. On our date, I taught the boys to open the car door for women, bring them flowers before the dinner, pull out a woman's chair and be respectful at the dinner table at all times!
I do have a very important prayer request. Our 6 year old next door neighbor, Dylan, was diagnosed with Leukemia! He is having chemo every 4 DAYS! His face is a little swollen from the steroids, he is SO SICK FROM THE CHEMO!! Last night, I was in my room and I heard screaming and crying. A sound I will never forget. I dropped everything and started yelling for everyone to run outside something is WRONG!! I honestly thought one of my boys were hit by a car or something! My dad, Jon and I run outside to find Lisa (Dylans mom) rocking Dylan in her lap as he is screaming, "MOMMY MAKE ME BETTER, MAKE IT STOP!!! I AM SO SICK MOMMY, I CAN'T DO THIS!!" I can not describe the horrors of chemo. Its unlike ANYTHING I have experienced in my life. She (his mom) was just sobbing and rocking him. She said every night at around 6pm, he just melts down like this and she doesn't know how to console him. She thought letting him sit on the front porch and get some air would help him. I told her (begged her) to take a walk around the block and clear her mind and just get out. She told me she would NEVER leave him. I, as a mom, get that completely. Cancer is from the devil... thankfully they caught the leukemia pretty quickly and he has a 95% chance of being completely cancer free by the end of November! So please please pray for Dylan and his whole family! I am so thankful that it is me and not my kids who are sick! I would do anything to take Dylan's pain away! Lisa is my hero!! She is an amazing mom, she always has been. But to have to endure what they are going through is unfathomable!
Well, I am going to wrap this up, Jon is already snoring away! LOL! I better get to sleep! Morning comes too early in this household!
Keep praying, God is listening and is really keeping us together!! But like the dr constantly likes to remind me, I can be doing wonderfully one day and 2 weeks later, I could be gone! Pray for my CT scans to keep coming back good, pray for my kids and husband to keep their sanity, pray for my MRI and pray for little Dylan! Thanks everyone!!
Wednesday, July 17, 2013
WOW! LONG TIME, NO POST!!
Oh my word!! I can not believe that I have taken so much time off from posting. There is actually a good reason for it... spending time with my family and making memories!!
Pretty much I have been just living life!! I went on a friends only (no kids!!!) trip to Las Vegas! My bestie paid for a get away for us and it was a blast! I highly recommend a friends trip to just relax and exhale for a little bit! I needed it. Thank you Krista, it was a weekend I will never forget. We went on our annual family lake trip to Laughlin, we will be going another 2 times to Laughlin this summer. Other than that, we have been a normal family again because I have not been too sick since stopping the IV chemo drugs. I also organized a last minute block party for the 4th of July and we ended up having over 50 family and friends over. IT WAS AMAZING!!!
On the battle front, I am off my IV chemo for a couple months while the kids are out of school. I couldn't imagine another summer on chemo. I had not had a break in almost a year. So, after having my last scan, Dr P said I could stay off chemo, unless I had a jump in numbers. So far I have not had chemo for the last 3 sessions!!! YAY ME!! My numbers are remaining stable, I am still doing the pills for 2 weeks on,1 week off. Around the beginning of June, I needed to shave my head! I had gone to the salon and had my hair cut and dyed by a friend. It was thin at the time (around mid May), but still doable! All of the sudden, it just started falling out like crazy! I tried everything to keep it. Special shampoos, sprays, and even a dark brown powder to fill in the bald spots. But, once there were more bald spots than hair, I knew I had lost that battle! I was SO insecure about my hair when it was thinning, I didn't even want to get close to anyone and actually started wearing scarves and head coverings (thank you Kira, for buying my favorite head cover for me!) I looked like a zombie straight out of the Thriller video!! I talked to the kids and Jon and they were not ready for me to shave it. Finally after sitting them all down, I said, "Do you honestly all think my hair looks better this way than it would look shaved?" They all agreed that shaving my hair would look better than what it looked like then. Plus, I think we were all done with my horrible self-esteem and the feeling that it was controlling me! So, the day came... the clippers came out. In my backyard with my aunts, neighbors, husband and kids, I shaved my head! Let me tell you, I have never felt prettier than that day!! My hair looked that bad before I shaved it. We are all so used to it now, that sometimes I forget and walk outside to talk to the neighbors and wont have a scarf, wig or hat on!! Oops! I did scare some of the neighbor kids in the beginning but now they don't even blink an eye when they are playing here. I doubt if the kids around here are going to remember me as the "mom with cancer", but more like the crazy mom who makes us go home and brush our teeth or do a chore before I can play. What can I say, I want all children to have good health. I do it out of love. Jon makes fun of me all the time about that. He laughs and says I am the neighborhood mommy! They listen, run home, brush their hair or clean their rooms and I will praise them on a job well done when they get back! I even had to tell one little one, "OK, its been 3 hours, you need to go home and get a diaper change and then you can come right back!!" NO LIE!! OK! I don't know how I got here, but lets focus... No chemo, No hair, NO PROBLEMS! So, I am just cruising right now. My numbers are not going up or down, my energy level is WAY up. I am a cleaning FANATIC right now. I know that soon, I will be knocked back on my butt. So I am trying to get everything done now that I wanted to do for months.
Now onto the home front.... Our prayer (my and Jon's) since the 1st of the year, has been for me to not need a hospital trip for 2013. Well, so far my prayers have been answered, but maybe at the expense of others. Since we uttered those words for the past 7 months, we have had quite a rocky 2013 in this family. Oh I have been in the hospital, more times than I can probably count this year, just as a visitor, not the patient. In January, (the 28th, my mom and uncles birthdays) My grandma suffered a horrible stroke at a family party and was in the hospital about (maybe even over) a week before she passed away. During one of those long days at the hospital, while receiving some tough news about grandma, my mom suffered a minor stroke right there in the hospital. She has since been in the hospital a total of 4 times (all strokes) since February. Then, Jonny took a trip to the ER (the same day my mom suffered her first stroke and my grandmother was still in the hospital as well) because he broke his arm by getting it in caught in the car door. Then, about a month later, my cousin was skateboarding (he is over 40, but he still has the moves!) and he fell pretty bad, then he walked around for a while when he finally realized the pain was not going away, he took a trip to the ER. They told him he had broke his neck. So he was in the hospital (a couple doors down from where my grandma was).He is still wearing a neck brace, even now. Then, in April, we found out Caylee would need surgery for her UTI's. Her surgery was in June. At least it wasn't St Jude it was performed at CHOC! We got a change of scenery for that one. (PRAISE REPORT... THE SURGERY WORKED AND SHE ONLY GOES BACK FOR A RECHECK IN A YEAR FROM NOW.) The end of June rolls around, kids are out of school, so its time for our annual family trip to the Lake. Like every year we stay in a hotel in Laughlin, Well the day we packed up to leave Laughlin, my cousin's youngest son, just barely 1 year old, pulled a cup of hot coffee on himself and off to the hospital he went. That poor baby went thru so much. 3 hospitals, an ambulance ride and then back here in Orange County for a 5 day stay at UCI's burn center. He just came home when, one of my other friends (my best friend's sister) had a pretty big surgery, I couldn't visit her, but I let her know I was praying for her. Then, just this week my friend Susie, had surgery. Her surgery was on Monday, July 15th , didn't go exactly how she would have liked, but she is doing well. Well, after her surgery and once Jon got home from work, we ran down to St Jude to visit her. Its hard getting to do something as little as going to the hospital. With everyone sick or working it, is such a feat for us to leave the house, we need to find someone who can watch the kids so we can make little trips!! With my mom now having random strokes, she can't watch the kids anymore and we don't want her to ever be alone because if if happens when we are all gone, who would call 911 or run her to St Jude. So we have to work around everyone's schedules now. Its gonna get ugly when soccer starts and I am back on chemo. I don't know how we are going to do it! Please pray for that all to work out for us! So back to visiting Sue, we were there hanging out with her but knew we had to get back a decent hour because my dad had errands to run and we needed to be home with mom and the kids. So we get home from visiting Susie, boys are in bed while our night owl (Caylee) is watching Mickey Mouse. Jon and I start our nightly "Just you and I" nightly routine. Caylee gets to watch 1 Mickey Mouse Club House before bed. Then off she goes to sleep, we are watching bachelorette (yes, it could be worse!!) Then, we get into jams, I do my Monday "beauty" routine... brush teeth, wash face, mud masque, under eye cream, vitamin C serum, all over moisturizer with 30 spf (because I am on chemo, my face needs it everyday) Then onto my nails, took off the polish and started polishing my nails (can't afford to get them down anymore, especially where you pay $50 for a mani/pedi!!) In the middle of painting my nails. My dad BANGS on the door!!! He starts saying "Get up, Get up!! Mom is having another stroke." I rushed into her bedroom started trying to revive her. She was not responding. I started loudly, up in her face saying, I was going to call 911, if didn't start responded. NOTHING, she didn't even open an eye to acknowledge me. Then I screamed it in her face a minute later and Jon told me I was being too loud, the kids were asleep. I could tell in his eyes, he was scared! So I ignored the comment and started yelling in my moms face more to rouse her. My dad even came over to try to get her to at least open her eyes or wiggle a toe! Then God smiled upon us, I had just gave in and told my dad that we should call 911!! Then my mom started moving her feet then next legs and in that order, her eyes opened. By the time we got her sitting up she said "I don't need an ambulance, just take me in our car." So off to the hospital she went, with my aunt and I a few minutes behind her and then my brother also met us there. THIS WAS HER 4TH ONE! So I stayed with her and then labs and scans all came back good, so she was free to go. So we got ready to boogie out and I told my mom regardless that its 3am, I am going up to see Susie, so my aunt wanted to go with me, so we went and visited her and said good night. Its only July, we have 5 more months in this year! Please pray with me for the safety of my loved ones to stay out of the hospital as well as keeping me out also.
That about sums things up for right now. Jonny leaves for his sleep away summer camp for a week on Monday. I need to get him packed tonight. He has attended 3 VBS programs and starts soccer soon. Joey is doing well on his meds. They are a life saver. He sticks to me like glue though. He will spend the night away from me to spend the night with his cousins (Jordan and Roman) He refused to go to 2 of the other VBS programs, but I made him go to the one at our church. So, we have been spending a lot of time together. One day, both of the other kids were busy, so I took Joey on a date to Starbucks. (Because of my anxiety) I have never taken just 1 kid out somewhere. He was such a gentleman, he opened doors for me, went up and got the drinks (which he had the guy put his name on) and we sat in Starbucks and just talked for a little bit until it was time to pick up Caylee. Now onto my maniac!! Miss Caylee is now in dance class! (One of my bucket list items is to see my daughter in dance and have a recital! She loves it!! She asks everyday if she can go to dance! She is so cute in her leotard and tap shoes. Her surgery went "beautifully" as the surgeon put it. He said she healed up exactly as he hoped. Now there are no excuses why she can't be potty trained. SO THE HAMMER IS COMING DOWN ON THAT LITTLE ONE. She will be fully potty trained, by 30 years old, if I have anything to do about it! LOL!
My prayer requests are to stay off chemo for just 1 more session!!! If the dr makes me have it next Friday, it will mess up my plans for our next vacation. Also pray that Jonny has a great time at camp, learning about God and getting closer to Him and that he returns safe and sound. Please pray for Caylee to finally potty train, she is so hard headed and pray her UTI nightmare is really over. Pray for Joey's anxiety. Pray for a peace to come over him that it is ok to be away from me and that he has the courage to do things on his own. I think he may be a little co-dependent using his brother as his crutch. Pray for Jon's work to get busy. We are having a rough time financially still, even with him back to work more with me being off chemo. I thought we would start getting the checks we used to get and we have not been seeing those numbers still. Lastly pray for our family to have safe trips to the lake. The past 2 years our family (extended) have not had the greatest luck out there. Thanks for listening and keep praying, GOD IS LISTENING!!
Pretty much I have been just living life!! I went on a friends only (no kids!!!) trip to Las Vegas! My bestie paid for a get away for us and it was a blast! I highly recommend a friends trip to just relax and exhale for a little bit! I needed it. Thank you Krista, it was a weekend I will never forget. We went on our annual family lake trip to Laughlin, we will be going another 2 times to Laughlin this summer. Other than that, we have been a normal family again because I have not been too sick since stopping the IV chemo drugs. I also organized a last minute block party for the 4th of July and we ended up having over 50 family and friends over. IT WAS AMAZING!!!
On the battle front, I am off my IV chemo for a couple months while the kids are out of school. I couldn't imagine another summer on chemo. I had not had a break in almost a year. So, after having my last scan, Dr P said I could stay off chemo, unless I had a jump in numbers. So far I have not had chemo for the last 3 sessions!!! YAY ME!! My numbers are remaining stable, I am still doing the pills for 2 weeks on,1 week off. Around the beginning of June, I needed to shave my head! I had gone to the salon and had my hair cut and dyed by a friend. It was thin at the time (around mid May), but still doable! All of the sudden, it just started falling out like crazy! I tried everything to keep it. Special shampoos, sprays, and even a dark brown powder to fill in the bald spots. But, once there were more bald spots than hair, I knew I had lost that battle! I was SO insecure about my hair when it was thinning, I didn't even want to get close to anyone and actually started wearing scarves and head coverings (thank you Kira, for buying my favorite head cover for me!) I looked like a zombie straight out of the Thriller video!! I talked to the kids and Jon and they were not ready for me to shave it. Finally after sitting them all down, I said, "Do you honestly all think my hair looks better this way than it would look shaved?" They all agreed that shaving my hair would look better than what it looked like then. Plus, I think we were all done with my horrible self-esteem and the feeling that it was controlling me! So, the day came... the clippers came out. In my backyard with my aunts, neighbors, husband and kids, I shaved my head! Let me tell you, I have never felt prettier than that day!! My hair looked that bad before I shaved it. We are all so used to it now, that sometimes I forget and walk outside to talk to the neighbors and wont have a scarf, wig or hat on!! Oops! I did scare some of the neighbor kids in the beginning but now they don't even blink an eye when they are playing here. I doubt if the kids around here are going to remember me as the "mom with cancer", but more like the crazy mom who makes us go home and brush our teeth or do a chore before I can play. What can I say, I want all children to have good health. I do it out of love. Jon makes fun of me all the time about that. He laughs and says I am the neighborhood mommy! They listen, run home, brush their hair or clean their rooms and I will praise them on a job well done when they get back! I even had to tell one little one, "OK, its been 3 hours, you need to go home and get a diaper change and then you can come right back!!" NO LIE!! OK! I don't know how I got here, but lets focus... No chemo, No hair, NO PROBLEMS! So, I am just cruising right now. My numbers are not going up or down, my energy level is WAY up. I am a cleaning FANATIC right now. I know that soon, I will be knocked back on my butt. So I am trying to get everything done now that I wanted to do for months.
Now onto the home front.... Our prayer (my and Jon's) since the 1st of the year, has been for me to not need a hospital trip for 2013. Well, so far my prayers have been answered, but maybe at the expense of others. Since we uttered those words for the past 7 months, we have had quite a rocky 2013 in this family. Oh I have been in the hospital, more times than I can probably count this year, just as a visitor, not the patient. In January, (the 28th, my mom and uncles birthdays) My grandma suffered a horrible stroke at a family party and was in the hospital about (maybe even over) a week before she passed away. During one of those long days at the hospital, while receiving some tough news about grandma, my mom suffered a minor stroke right there in the hospital. She has since been in the hospital a total of 4 times (all strokes) since February. Then, Jonny took a trip to the ER (the same day my mom suffered her first stroke and my grandmother was still in the hospital as well) because he broke his arm by getting it in caught in the car door. Then, about a month later, my cousin was skateboarding (he is over 40, but he still has the moves!) and he fell pretty bad, then he walked around for a while when he finally realized the pain was not going away, he took a trip to the ER. They told him he had broke his neck. So he was in the hospital (a couple doors down from where my grandma was).He is still wearing a neck brace, even now. Then, in April, we found out Caylee would need surgery for her UTI's. Her surgery was in June. At least it wasn't St Jude it was performed at CHOC! We got a change of scenery for that one. (PRAISE REPORT... THE SURGERY WORKED AND SHE ONLY GOES BACK FOR A RECHECK IN A YEAR FROM NOW.) The end of June rolls around, kids are out of school, so its time for our annual family trip to the Lake. Like every year we stay in a hotel in Laughlin, Well the day we packed up to leave Laughlin, my cousin's youngest son, just barely 1 year old, pulled a cup of hot coffee on himself and off to the hospital he went. That poor baby went thru so much. 3 hospitals, an ambulance ride and then back here in Orange County for a 5 day stay at UCI's burn center. He just came home when, one of my other friends (my best friend's sister) had a pretty big surgery, I couldn't visit her, but I let her know I was praying for her. Then, just this week my friend Susie, had surgery. Her surgery was on Monday, July 15th , didn't go exactly how she would have liked, but she is doing well. Well, after her surgery and once Jon got home from work, we ran down to St Jude to visit her. Its hard getting to do something as little as going to the hospital. With everyone sick or working it, is such a feat for us to leave the house, we need to find someone who can watch the kids so we can make little trips!! With my mom now having random strokes, she can't watch the kids anymore and we don't want her to ever be alone because if if happens when we are all gone, who would call 911 or run her to St Jude. So we have to work around everyone's schedules now. Its gonna get ugly when soccer starts and I am back on chemo. I don't know how we are going to do it! Please pray for that all to work out for us! So back to visiting Sue, we were there hanging out with her but knew we had to get back a decent hour because my dad had errands to run and we needed to be home with mom and the kids. So we get home from visiting Susie, boys are in bed while our night owl (Caylee) is watching Mickey Mouse. Jon and I start our nightly "Just you and I" nightly routine. Caylee gets to watch 1 Mickey Mouse Club House before bed. Then off she goes to sleep, we are watching bachelorette (yes, it could be worse!!) Then, we get into jams, I do my Monday "beauty" routine... brush teeth, wash face, mud masque, under eye cream, vitamin C serum, all over moisturizer with 30 spf (because I am on chemo, my face needs it everyday) Then onto my nails, took off the polish and started polishing my nails (can't afford to get them down anymore, especially where you pay $50 for a mani/pedi!!) In the middle of painting my nails. My dad BANGS on the door!!! He starts saying "Get up, Get up!! Mom is having another stroke." I rushed into her bedroom started trying to revive her. She was not responding. I started loudly, up in her face saying, I was going to call 911, if didn't start responded. NOTHING, she didn't even open an eye to acknowledge me. Then I screamed it in her face a minute later and Jon told me I was being too loud, the kids were asleep. I could tell in his eyes, he was scared! So I ignored the comment and started yelling in my moms face more to rouse her. My dad even came over to try to get her to at least open her eyes or wiggle a toe! Then God smiled upon us, I had just gave in and told my dad that we should call 911!! Then my mom started moving her feet then next legs and in that order, her eyes opened. By the time we got her sitting up she said "I don't need an ambulance, just take me in our car." So off to the hospital she went, with my aunt and I a few minutes behind her and then my brother also met us there. THIS WAS HER 4TH ONE! So I stayed with her and then labs and scans all came back good, so she was free to go. So we got ready to boogie out and I told my mom regardless that its 3am, I am going up to see Susie, so my aunt wanted to go with me, so we went and visited her and said good night. Its only July, we have 5 more months in this year! Please pray with me for the safety of my loved ones to stay out of the hospital as well as keeping me out also.
That about sums things up for right now. Jonny leaves for his sleep away summer camp for a week on Monday. I need to get him packed tonight. He has attended 3 VBS programs and starts soccer soon. Joey is doing well on his meds. They are a life saver. He sticks to me like glue though. He will spend the night away from me to spend the night with his cousins (Jordan and Roman) He refused to go to 2 of the other VBS programs, but I made him go to the one at our church. So, we have been spending a lot of time together. One day, both of the other kids were busy, so I took Joey on a date to Starbucks. (Because of my anxiety) I have never taken just 1 kid out somewhere. He was such a gentleman, he opened doors for me, went up and got the drinks (which he had the guy put his name on) and we sat in Starbucks and just talked for a little bit until it was time to pick up Caylee. Now onto my maniac!! Miss Caylee is now in dance class! (One of my bucket list items is to see my daughter in dance and have a recital! She loves it!! She asks everyday if she can go to dance! She is so cute in her leotard and tap shoes. Her surgery went "beautifully" as the surgeon put it. He said she healed up exactly as he hoped. Now there are no excuses why she can't be potty trained. SO THE HAMMER IS COMING DOWN ON THAT LITTLE ONE. She will be fully potty trained, by 30 years old, if I have anything to do about it! LOL!
My prayer requests are to stay off chemo for just 1 more session!!! If the dr makes me have it next Friday, it will mess up my plans for our next vacation. Also pray that Jonny has a great time at camp, learning about God and getting closer to Him and that he returns safe and sound. Please pray for Caylee to finally potty train, she is so hard headed and pray her UTI nightmare is really over. Pray for Joey's anxiety. Pray for a peace to come over him that it is ok to be away from me and that he has the courage to do things on his own. I think he may be a little co-dependent using his brother as his crutch. Pray for Jon's work to get busy. We are having a rough time financially still, even with him back to work more with me being off chemo. I thought we would start getting the checks we used to get and we have not been seeing those numbers still. Lastly pray for our family to have safe trips to the lake. The past 2 years our family (extended) have not had the greatest luck out there. Thanks for listening and keep praying, GOD IS LISTENING!!
Tuesday, April 9, 2013
FUNDRAISER WAS A SUCCESS!!!
Well, I can not thank all of you enough for the success of the fundraiser we had at Chili's!! We made over $2000!! I will be walking in to chemo tomorrow and writing a big fat check!! I will not receive the check from Chili's for another couple of weeks, so I will be writing another one for them next month too! Again we appreciate every single one of you who donated, prayed and supported us!! We love you all! All glory to God, because we all know he is the real power behind all of this!
Tomorrow is chemo again.. I am not a happy camper. Jon says I usually pick fights with him the night before chemo!!! Who?? ME!!??? I don't believe him! But tonight he is working late, so since I can not aim my emotions at him, I thought I would jump on here and update everyone!! I did realize tonight that this is the longest that I have been on chemo without a break since starting in June of 2011. I have been doing chemo for 8 months straight!!! The longest I had gone without a break before was 4 months! I think I am due for a break. (I know my hair is ready for a break! This is the thinnest my hair has ever been!) I need a fun break, not one that involves a surgery or hospital time. Maybe a nice beach somewhere!
This past weekend I got sick. WOULDN'T YOU KNOW THE ONE WEEKEND JON AND I HAD A BABYSITTER TO TAKE THE KIDS OVERNIGHT AND I GET SICK!!?? What are the odds? Pretty good when you are Christianne Adamik! I think I had over did it at the fundraiser. I literally could hardly walk to the car at the end of the night! I had forgot to eat, drink and take my pills while at the restaurant! After I got home from the fundraiser, I don't even remember how I got into the bath, but an hour after soaking and Jon getting me food, water and my pills, I was a lot better! Anyway, the next day I ended up having a fever of 101.5 and was throwing up! Usually they make you go to the ER, but they said if we could get the fever under control in 2 hours, I could stay home. About an hour after taking all my meds and extra Tylenol, I was feeling much better. I fought the fever on and off for the next few days, but by Sunday night it had broke completely! So I am curious to see if my labs say anything tomorrow. I am not lucky enough to get to skip this round, so I am not getting my hopes up. I have been having more pain lately, in my chest. I thought maybe it was psychological, but a couple days after noticing the increased pain, Jon and I were in our room and the kids were in bed. He kept hearing a weird noise, then he walked closer to me and asked if I could hear it and I said no. He came even closer and looked at me funny and said it was coming from me! I was wheezing and he heard it across the room. So that is something else I need to bring up at tomorrow's appointment. But that shouldn't be too much of a surprise because the cancer in my lungs did grow.
I do have an update on the kids. The school finally stepped in and the boys are now seeing the school's psychologist. They go every Tuesday. They haven't been to their personal counselor in a while because, we just can't afford it. But we really needed to do something about Joey being on Ritalin. This dose is a high one and the doctor said this is the highest dose he is willing to prescribe. Joey's teacher (who I adore and completely trust, she even showed up to the fundraiser!!) and I both agree, this pill is just not working for him. So we made an appointment for Joey to see a psychologist (because they are counselors who can prescribe meds, they sound scarier than they are!) So he goes to see her on April 26th. He is such a good kid! Loves animals and to garden. Today he took his toy gun that makes a loud popping noise and sat on a chair for hours because we had a butterfly hatch out of a cocoon today. He used the gun to scare off birds until the butterfly's wings were strong enough to fly away! That's Joey! On the other hand, if we don't keep him busy, he gets in a mess of trouble! Like jumping off the roof, trouble!
Jonny is up and down. He started bringing and reading his Bible to school. He came home one night and told me he was reading his Bible at school because he ran out of books there that interested him (so in other words, they ran out of Star Wars books!) At first the Negative Nelly in me said, "YA RIGHT!?" Of course, I would never say that to him, so what did I do because I didn't believe him? I quizzed him. He answered every question I threw at him! I was still in disbelief. So finally I asked him about Adam and Eve (because he said he had already read that and was reading about Noah already) I asked him why they got into trouble. He said, 'That's easy mom. The snake gave Eve the fruit because if they ate the fruit, they would know as much as God knows! So she ate the fruit and gave it to Adam. He ate it and then they realized they were NAKED (he said it like snake without the S) and then they made clothes out of fig leaves and was banished from the garden!" I started crying!!! I felt so bad, he looked at me like I was CRAZY!! He said, "What? was I wrong?!" I said, "No baby!!! I was wrong!!!" As soon as he said NAKED I knew he was telling the truth because he said it like its spelled not how its pronounced!! I felt like the snake!!! I apologized for quizzing him and he told me he liked it. Then proceeded to tell me the rest of what he had read! Even facts like how old Noah was when he died! I felt like the biggest jerk. Then he told me that everyone kept asking him to look up different verses! I said, "That is a great way to witness and tell people about Jesus!" He said that he told his friends to bring their Bibles and then they would read it together and talk about what they were reading. I told him that was called a Bible study!! He laughed so hard! I said, "what is so funny?!" He said, "I didn't know thats what a Bible study was!!" LOL!! So, a couple of days go by and Jon goes to Jonny's parent/teacher conference. The teacher asked if we were aware that Jonny was taking his Bible to school and leading a Bible study!!!?? Jon said, he got defensive and said, "Yes we are! Is that a problem?" The teacher replied, "NOT WITH ME!! I am backing him up 100%, so far he has done everything right and they can't stop him!!" He then informed Jon that he was actually going to go to seminary, but his wife got pregnant and he decided to become a teacher! He also said that Jonny has been reading scripture in front of the class and he lets him answer student's questions!! My son the evangelist! I am so proud! It is so comforting to know, BOTH of the boy's teachers are Christians! Makes sending them to public school a little easier! He is struggling with believing he has cancer. We took him to the doctor to ease his mind! We have to make another appointment for him to have the lab work done to prove to him, he is healthy! I pray he does not worry his entire life that he will one day end up with colon cancer!
Then there is Caylee, she is still struggling with her urinary stuff. Today she went to CHOC and had an ultrasound done and an appointment with Dr Antoine Khoury! One of the top Urologists around. They scheduled her for a Cystoscopy, bilateral deflux today. If anyone knows anything about that procedure, please email me!! (You know I will be googling the heck out of it also!) Her surgery is next month at CHOC hospital. She will only be under for 10 minutes, but when it is your baby, 10mins feels like 10 hours!! The doctor said that this is the last procedure she will have before they have to start doing an even more invasive surgery, where they actually cut her!! She will be on a new prescription to keep the UTI's at bay until her surgery. I know God has a special plan for her. He holds my whole family in his loving hands!!
On a financial note, we are still struggling hard! As many of you know, our phones have been cut off! If you need us, call my parents house phone, facebook us or email us at Ciadamik@aol.com! We are using all the money we earned from the fundraiser strictly on medical bills! I don't want people thinking we are going out and flushing their money away on our personal bills, wants and needs. We did apply for Medicare and we did get approved for that! That will help us out tremendously!! That will pay our copays, deductibles and prescriptions. The problem is, we are waiting patiently by the mailbox to receive our cards. Once we get our cards we are in business!
Keep praying!! Pray for my kids. Pray for Joey to get the right prescription he needs! Pray for Jonny that God uses him to lead many of his classmates to the Lord or at least plant the seed! Pray too that he gets a peace about having cancer (or not having cancer in his case) Pray for my Caylee to be comforted during her surgery and that it will be as painless as possible. Also pray that this will be the last procedure she will need to have done!! Pray for me to either get a second wind when it comes to chemo or that its His will I get to have a little chemo vacation! Pray for Jon, that his job remains supportive of our needs and that he keeps his sanity intact during all of this! Remember, God is listening, even though it might not seem so!!
Tomorrow is chemo again.. I am not a happy camper. Jon says I usually pick fights with him the night before chemo!!! Who?? ME!!??? I don't believe him! But tonight he is working late, so since I can not aim my emotions at him, I thought I would jump on here and update everyone!! I did realize tonight that this is the longest that I have been on chemo without a break since starting in June of 2011. I have been doing chemo for 8 months straight!!! The longest I had gone without a break before was 4 months! I think I am due for a break. (I know my hair is ready for a break! This is the thinnest my hair has ever been!) I need a fun break, not one that involves a surgery or hospital time. Maybe a nice beach somewhere!
This past weekend I got sick. WOULDN'T YOU KNOW THE ONE WEEKEND JON AND I HAD A BABYSITTER TO TAKE THE KIDS OVERNIGHT AND I GET SICK!!?? What are the odds? Pretty good when you are Christianne Adamik! I think I had over did it at the fundraiser. I literally could hardly walk to the car at the end of the night! I had forgot to eat, drink and take my pills while at the restaurant! After I got home from the fundraiser, I don't even remember how I got into the bath, but an hour after soaking and Jon getting me food, water and my pills, I was a lot better! Anyway, the next day I ended up having a fever of 101.5 and was throwing up! Usually they make you go to the ER, but they said if we could get the fever under control in 2 hours, I could stay home. About an hour after taking all my meds and extra Tylenol, I was feeling much better. I fought the fever on and off for the next few days, but by Sunday night it had broke completely! So I am curious to see if my labs say anything tomorrow. I am not lucky enough to get to skip this round, so I am not getting my hopes up. I have been having more pain lately, in my chest. I thought maybe it was psychological, but a couple days after noticing the increased pain, Jon and I were in our room and the kids were in bed. He kept hearing a weird noise, then he walked closer to me and asked if I could hear it and I said no. He came even closer and looked at me funny and said it was coming from me! I was wheezing and he heard it across the room. So that is something else I need to bring up at tomorrow's appointment. But that shouldn't be too much of a surprise because the cancer in my lungs did grow.
I do have an update on the kids. The school finally stepped in and the boys are now seeing the school's psychologist. They go every Tuesday. They haven't been to their personal counselor in a while because, we just can't afford it. But we really needed to do something about Joey being on Ritalin. This dose is a high one and the doctor said this is the highest dose he is willing to prescribe. Joey's teacher (who I adore and completely trust, she even showed up to the fundraiser!!) and I both agree, this pill is just not working for him. So we made an appointment for Joey to see a psychologist (because they are counselors who can prescribe meds, they sound scarier than they are!) So he goes to see her on April 26th. He is such a good kid! Loves animals and to garden. Today he took his toy gun that makes a loud popping noise and sat on a chair for hours because we had a butterfly hatch out of a cocoon today. He used the gun to scare off birds until the butterfly's wings were strong enough to fly away! That's Joey! On the other hand, if we don't keep him busy, he gets in a mess of trouble! Like jumping off the roof, trouble!
Jonny is up and down. He started bringing and reading his Bible to school. He came home one night and told me he was reading his Bible at school because he ran out of books there that interested him (so in other words, they ran out of Star Wars books!) At first the Negative Nelly in me said, "YA RIGHT!?" Of course, I would never say that to him, so what did I do because I didn't believe him? I quizzed him. He answered every question I threw at him! I was still in disbelief. So finally I asked him about Adam and Eve (because he said he had already read that and was reading about Noah already) I asked him why they got into trouble. He said, 'That's easy mom. The snake gave Eve the fruit because if they ate the fruit, they would know as much as God knows! So she ate the fruit and gave it to Adam. He ate it and then they realized they were NAKED (he said it like snake without the S) and then they made clothes out of fig leaves and was banished from the garden!" I started crying!!! I felt so bad, he looked at me like I was CRAZY!! He said, "What? was I wrong?!" I said, "No baby!!! I was wrong!!!" As soon as he said NAKED I knew he was telling the truth because he said it like its spelled not how its pronounced!! I felt like the snake!!! I apologized for quizzing him and he told me he liked it. Then proceeded to tell me the rest of what he had read! Even facts like how old Noah was when he died! I felt like the biggest jerk. Then he told me that everyone kept asking him to look up different verses! I said, "That is a great way to witness and tell people about Jesus!" He said that he told his friends to bring their Bibles and then they would read it together and talk about what they were reading. I told him that was called a Bible study!! He laughed so hard! I said, "what is so funny?!" He said, "I didn't know thats what a Bible study was!!" LOL!! So, a couple of days go by and Jon goes to Jonny's parent/teacher conference. The teacher asked if we were aware that Jonny was taking his Bible to school and leading a Bible study!!!?? Jon said, he got defensive and said, "Yes we are! Is that a problem?" The teacher replied, "NOT WITH ME!! I am backing him up 100%, so far he has done everything right and they can't stop him!!" He then informed Jon that he was actually going to go to seminary, but his wife got pregnant and he decided to become a teacher! He also said that Jonny has been reading scripture in front of the class and he lets him answer student's questions!! My son the evangelist! I am so proud! It is so comforting to know, BOTH of the boy's teachers are Christians! Makes sending them to public school a little easier! He is struggling with believing he has cancer. We took him to the doctor to ease his mind! We have to make another appointment for him to have the lab work done to prove to him, he is healthy! I pray he does not worry his entire life that he will one day end up with colon cancer!
Then there is Caylee, she is still struggling with her urinary stuff. Today she went to CHOC and had an ultrasound done and an appointment with Dr Antoine Khoury! One of the top Urologists around. They scheduled her for a Cystoscopy, bilateral deflux today. If anyone knows anything about that procedure, please email me!! (You know I will be googling the heck out of it also!) Her surgery is next month at CHOC hospital. She will only be under for 10 minutes, but when it is your baby, 10mins feels like 10 hours!! The doctor said that this is the last procedure she will have before they have to start doing an even more invasive surgery, where they actually cut her!! She will be on a new prescription to keep the UTI's at bay until her surgery. I know God has a special plan for her. He holds my whole family in his loving hands!!
On a financial note, we are still struggling hard! As many of you know, our phones have been cut off! If you need us, call my parents house phone, facebook us or email us at Ciadamik@aol.com! We are using all the money we earned from the fundraiser strictly on medical bills! I don't want people thinking we are going out and flushing their money away on our personal bills, wants and needs. We did apply for Medicare and we did get approved for that! That will help us out tremendously!! That will pay our copays, deductibles and prescriptions. The problem is, we are waiting patiently by the mailbox to receive our cards. Once we get our cards we are in business!
Keep praying!! Pray for my kids. Pray for Joey to get the right prescription he needs! Pray for Jonny that God uses him to lead many of his classmates to the Lord or at least plant the seed! Pray too that he gets a peace about having cancer (or not having cancer in his case) Pray for my Caylee to be comforted during her surgery and that it will be as painless as possible. Also pray that this will be the last procedure she will need to have done!! Pray for me to either get a second wind when it comes to chemo or that its His will I get to have a little chemo vacation! Pray for Jon, that his job remains supportive of our needs and that he keeps his sanity intact during all of this! Remember, God is listening, even though it might not seem so!!
Thursday, April 4, 2013
NUMBER DROP!!!
I just realized that I never posted that we got a phone call from the doctor that my CEA numbers, that had been steadily climbing the past couple months, just took a nose dive!!!! They had crept all the way up to 72 and dropped to 61 in 3 weeks time!! The doctor usually waits to tell us my numbers from the previous visit, at the following dr appointment 3 weeks later. He was so excited, he called us with the news as soon as he got the results!! I guess those little baby steps worked!! I didn't lose any weight, but didn't gain either, so I will take it!! Now my next appointment, with all the Easter candy and desserts around here, I will be SHOCKED if I don't gain any weight! AH WELL!!
Also, tomorrow night we will be having a fundraiser at Chili's restaurant in Yorba Linda off Yorba Linda Blvd!! All you do is come in to eat any time between 11am to 10pm and bring in the below coupon and Chili's will donate 15% of you bill to go to help me pay my medical bills!! So print out the below coupon/flyer or email me at ciadamik@aol.com and I will email a coupon/flyer for you to print out!
Also, tomorrow night we will be having a fundraiser at Chili's restaurant in Yorba Linda off Yorba Linda Blvd!! All you do is come in to eat any time between 11am to 10pm and bring in the below coupon and Chili's will donate 15% of you bill to go to help me pay my medical bills!! So print out the below coupon/flyer or email me at ciadamik@aol.com and I will email a coupon/flyer for you to print out!
Also we have a praise report!!! We were accepted for MediCal!! Which means they cover almost everything that my private insurance does not cover!! The absolute most money out of pocket I will pay is $1000 a year!!! Right now it is $7500 individually or $15,000 for family! MediCal will start retroactively paying from the last 3 months and on!! The problem is, I owe almost $10,000 to St Jude from the previous couple of years. Well, we have not even looked at those medical bills because we were told by my doctor not to worry about them because he can't stop treating me, so we didn't worry about them. NOW, the human resource lady from St Jude is saying if we don't do something quickly and pay down these bills, if I ever go into remission, they will stop seeing me as a patient!!!! So, thankfully we will not be racking up any more medical bills because I qualified for MC , but I have got to get the old bills paid down now as soon as I can! I am so grateful to my friend Krista Parker for organizing the Chili's fundraiser! It took a lot of weight off my shoulders!!
So PLEASE... everyone take a night off from cooking to come eat and hang out with your friends at Chili's in Yorba Linda! Please wear your fight club shirt or royal blue!! Make sure you have the above flyer with you and bring some friends along! Even if you can not afford to eat out, come just to hang out and have a good time!! CAN'T WAIT TO SEE EVERYONE!! I may seem a little overwhelmed tomorrow, but please come up to me and say hello! I want to take pics with as many of my friends/supporters as I can!! Love you all and KEEP PRAYING.... HE IS LISTENING!!
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