So let me start off by saying, I had been going to dark places. NOTHING in our life seemed to be going well! It was starting to get difficult to keep the faith. We were in a valley and needed a BIG boost to start going back up the peak! Between the cancer numbers, ADHD, the MOUNTING bills we can't pay, Caylee's UTI's, chemo, dr appts (not just my appts either)... we were just not seeing a light at the end of the tunnel! After that pretty picture was painted for you, I will let you all know what has happened in the past week!
Friday October 5th, I woke up just feeling so down about this stupid CT Scan. I was SO close to just calling and cancelling it! My thoughts were, "I was already told that there would be growth and I KNOW the devil will use that to get a hold of my mind and really bring me down even further than I already am." This scan wasn't going to heal me and also I just thought it was too soon to be doing one before we gave the chemo a little time to work. I had only had 2 rounds of chemo at this point. My mom, who is my voice of reason, even agreed with me and told me if I really felt that deeply about it, just postpone it! Not to mention, they scheduled it for 3:45pm and you have to fast before it. Then, you have to go in 2 hours before the procedure just to drink the nasty contrast. I was not looking forward to starving the entire day. But, I decided just to get it over with. I went in and did the scan. They told me that I would have my results by my dr appt on the following Tuesday.
I stressed all weekend and couldn't stop thinking about the stupid scan! I was more nervous about this scan than any other scan I have had. Tuesday (October 9th) finally came. For some reason, they scheduled my dr appt and chemo on the same day. Usually my appt is on Monday and then I come back the next day for treatment. But this time, they did it all in one shot. After waiting what seems an eternity, Dr Paneres walks in. He started off by reminding me that he was pretty sure the cancer had grown because my cancer numbers were at 35 before my gall bladder surgery and now they have jumped to 62 and have leveled out there. At this point, I got a lump in my throat and I geared up for the blow. Then he turned to me and said, "But for some reason, you show signs of shrinkage!" He said he was so surprised and didn't know how it happened. To that I just said, "It's all GOD!! He did this!" Then he told me that he couldn't wait for this appointment because he had more good news. He then went into reminding me how I am on my last chemo, I am allergic to 1, 2 other ones do not work on my tumors and I am on the 4th and final chemo. Next step for me is clinical trials. I said, Of course I remember! He looked at me and said, "They just approved a new colon cancer drug!! You are a perfect candidate for it! They call it the super Avastin!" I was shocked!! I am still shocked! This appointment was the biggest miracle we have received since this nightmare began! He said that I will not be starting this drug anytime soon since the cocktail I am on is working so well. But it is just another step before clinical trials if we need it! Since I was having chemo right after my appt, he wrapped it up quickly so I wouldn't be late to chemo. Of course now I have a billion questions to ask him about everything. Like, what the name of that drug is!! LOL!! Also, how much shrinkage did I have. Jon heard, "I showed signs of shrinkage" I heard, "There was shrinkage"! Two totally different things! I think anyways! I guess it really doesn't matter, because our prayer wasn't even for it to shrink. I am so unfaithful, I was just praying for it not to spread because I was positive that it had grown. So I just kept praying that it didn't spread to any other areas! I am so ashamed of myself and unworthy of his mercy! Even in my last post I had mentioned that it was hard to remember that God is bigger than the cancer, but I STILL did not get it, I honestly still cant fully wrap my head around his greatness! Needless to say, chemo was not easier physically to go through, but mentally, it was a breeze!!! I was on cloud 9 going to chemo!!
The next day, Jon received a phone call from Caylee's urologist. He asked if we would rather come in for the results or do a phone appointment right then. Of course we wanted to save the $50 co-pay and get the results right then instead of waiting until the 17th to hear about our baby. So to wrap up what he said, he said that her valves are broken. So the valves that stop the urine from going from the bladder back up to the kidneys are not working. He said we have got to get her potty trained (which I have been trying to do for a YEAR now!!) I have potty trained probably around 75 kids in my life being a preschool teacher and I can NOT get my own daughter to go poo poo in the potty!! REALLY??!! He said she needs to stay on a continual dose of antibiotics until she is fully potty trained and that is why he needs it to happen quickly because he does not want her getting immune to the antibiotics. He said he thinks she may grow out of this problem, but if she doesn't, she will need surgery to repair the valves. He said that he wants to see her again in AUGUST!!! He said that will give her time to potty train and hopefully let the valves fix themselves. SO ANOTHER HUGE ANSWER TO PRAYER!!!
This was our week of miracles. God is SO good and we are so undeserving of his grace!! I just can't tell you how small I feel and really unfaithful. Keep praying for us! We still have a long way to go, but we are getting there! HE REALLY IS LISTENING TO OUR CRIES!!! Thank you all for each and every prayer you say for me and my family! We appreciate it more than you know!
Tuesday, October 16, 2012
Tuesday, October 2, 2012
BUSY, BUSY, BUSY!!
WE HAVE BEEN SO BUSY!! I have no other excuse for taking so long between blog posts! Jon is working late, again, so I thought I would take this alone time and catch everyone up on the lives of the Adamik family! I think I will do things a little different and instead of going by dates, I will go by the individual person in the family.
We will start with Caylee. She had her appointment with the urologist who did an abdominal ultrasound and told us she needed to have the VCUG. Then proceeded to ask why we denied the procedure with St Jude! We explained that the St Jude radiologists seemed reluctant to do it and we just didn't feel comfortable with her having to do that test with only having 1 UTI. He agreed with us and then said that he would be sending her to CHOC (Children's Hospital of Orange County) to have the procedure done. So, the time came (Friday September 28th) and we took her in to have it done. St Jude had told us it would take over an hour for the whole procedure, start to finish!!! CHOC told us that they would have it done in under 15 mins, but they still refused to give her any sort of sedation. Jon was brave enough to take her back and hold her down while they put the catheter in and emptied her bladder, then filled it up with contrast and take x-rays. They walked back into the waiting room where my mom, Susie and I were waiting on pins and needles and Caylee flew into my arms and just cried so hard!! She then said, "They took my diaper off!!" She just felt so violated and uncomfortable. It was the worst moment of my life and I have had a LOT of bad moments! I am crying just thinking about it. Thankfully, my mom had come up with the idea to buy her a couple of little gifts to give her when she came out and we gave them to her right then! 2 seconds later she was oohing and ahhing over the new Strawberry Shortcake doll and lotion set my mom and I bought her. I on the other hand, was not so easily over it. The doctor told us she would be over it physically right away! So after nap, we took her and the boys to Disneyland with my sister and her sons!
We have an appt with the urologist on October 17th to go over the results of the VCUG!
Josiah has been doing well! We found a christian counselor! He has been seeing her every other week. He doesn't like going and getting him to participate is a chore, but he is going!! She told us that we have done a great job with him by encouraging his love of being a "Godiner" (this is exactly how he spells gardener!) He loves to plant, water and weed! We have actually eaten his peas for dinner! She told us that gardening is very therapeutic and calming! I just wanted to keep him busy and out of trouble! LOL!
School wise he is doing well also. We have parent/teacher conferences coming up next week, but we are not hearing any negatives like we were in the previous years. He, for the first time, started going straight up to the table and doing his homework without me pulling teeth. I mean he literally comes home and pulls his homework out and does it quietly!! ITS AMAZING!! But let me tell you, that little boy keeps me on my toes!! He is a busy little guy!!
Jonny has also started going to counseling with his brother! He likes it a lot more that Joey does. He actually talks and is interested in it! Hopefully it will rub off on his brother!
He loves school and told me he has goals this year to be proficient in Language Arts!! I was so proud of him. Having goals is a big thing for me! I want my children to reach for the stars! He also starts band tomorrow! He is very excited about that too!
Soccer is his love though, we have been in full soccer mode for the past month! He has soccer practice 2 times a week for 1.5 hours and then a game on Saturday! My husband and dad think they are the coaches though! I have told Jonny to tune them out and listen to his real coach! ha ha! Poor kid! But, if you ever want to see pure joy, just watch Jonny play soccer. He has a permanent smile on his face the entire time!!
Jon is busier than ever! The poor guy never stops. He takes the boys to counseling, works full time, never misses a soccer games, has gone to every one of Caylee's dr appts and tries to make it to as many of mine as he can. Every so often (not often enough) he tries to get away with the guys and do something on his own. He really wants to go hunting with a buddy for the day next week and I am praying it happens!
Now we end with me!! I am already so over chemo!! I have had 2 rounds already and the week in between just flies by! I am trying to keep myself really busy by planning baby showers, birthdays and upcoming holidays. I feel like if I keep busy, the cancer won't catch up to me! I have a CT Scan on Friday and I think we are all afraid of what the results are going to be. Even my dr mentioned that they might not be good because of my recent surgery or something like that. I have stopped paying attention to be honest. I just do what I am told and go through all the motions like a good girl! I know that the cancer has grown because my numbers have been through the roof! I had been off for a while though and I need to remember that. It is just so easy for the devil to play tricks with my mind. I have been really trying to get into the Word and Jon and I started a prayer journal that we actually have been doing pretty good at keeping up with! I have also started going to the Friday morning ladies Bible study, so what did I expect. Of course Satan would come attacking!! But luckily my God is way bigger than all of this!! He is way bigger than cancer, I know that sounds like a no-brainer, but when you are in this storm, it is sometimes hard to see that!!
If you are still reading this, THANK YOU FRIEND!!! Keep praying for my family, HE IS LISTENING!!!!! Love you all so much!!
We will start with Caylee. She had her appointment with the urologist who did an abdominal ultrasound and told us she needed to have the VCUG. Then proceeded to ask why we denied the procedure with St Jude! We explained that the St Jude radiologists seemed reluctant to do it and we just didn't feel comfortable with her having to do that test with only having 1 UTI. He agreed with us and then said that he would be sending her to CHOC (Children's Hospital of Orange County) to have the procedure done. So, the time came (Friday September 28th) and we took her in to have it done. St Jude had told us it would take over an hour for the whole procedure, start to finish!!! CHOC told us that they would have it done in under 15 mins, but they still refused to give her any sort of sedation. Jon was brave enough to take her back and hold her down while they put the catheter in and emptied her bladder, then filled it up with contrast and take x-rays. They walked back into the waiting room where my mom, Susie and I were waiting on pins and needles and Caylee flew into my arms and just cried so hard!! She then said, "They took my diaper off!!" She just felt so violated and uncomfortable. It was the worst moment of my life and I have had a LOT of bad moments! I am crying just thinking about it. Thankfully, my mom had come up with the idea to buy her a couple of little gifts to give her when she came out and we gave them to her right then! 2 seconds later she was oohing and ahhing over the new Strawberry Shortcake doll and lotion set my mom and I bought her. I on the other hand, was not so easily over it. The doctor told us she would be over it physically right away! So after nap, we took her and the boys to Disneyland with my sister and her sons!
We have an appt with the urologist on October 17th to go over the results of the VCUG!
Josiah has been doing well! We found a christian counselor! He has been seeing her every other week. He doesn't like going and getting him to participate is a chore, but he is going!! She told us that we have done a great job with him by encouraging his love of being a "Godiner" (this is exactly how he spells gardener!) He loves to plant, water and weed! We have actually eaten his peas for dinner! She told us that gardening is very therapeutic and calming! I just wanted to keep him busy and out of trouble! LOL!
School wise he is doing well also. We have parent/teacher conferences coming up next week, but we are not hearing any negatives like we were in the previous years. He, for the first time, started going straight up to the table and doing his homework without me pulling teeth. I mean he literally comes home and pulls his homework out and does it quietly!! ITS AMAZING!! But let me tell you, that little boy keeps me on my toes!! He is a busy little guy!!
Jonny has also started going to counseling with his brother! He likes it a lot more that Joey does. He actually talks and is interested in it! Hopefully it will rub off on his brother!
He loves school and told me he has goals this year to be proficient in Language Arts!! I was so proud of him. Having goals is a big thing for me! I want my children to reach for the stars! He also starts band tomorrow! He is very excited about that too!
Soccer is his love though, we have been in full soccer mode for the past month! He has soccer practice 2 times a week for 1.5 hours and then a game on Saturday! My husband and dad think they are the coaches though! I have told Jonny to tune them out and listen to his real coach! ha ha! Poor kid! But, if you ever want to see pure joy, just watch Jonny play soccer. He has a permanent smile on his face the entire time!!
Jon is busier than ever! The poor guy never stops. He takes the boys to counseling, works full time, never misses a soccer games, has gone to every one of Caylee's dr appts and tries to make it to as many of mine as he can. Every so often (not often enough) he tries to get away with the guys and do something on his own. He really wants to go hunting with a buddy for the day next week and I am praying it happens!
Now we end with me!! I am already so over chemo!! I have had 2 rounds already and the week in between just flies by! I am trying to keep myself really busy by planning baby showers, birthdays and upcoming holidays. I feel like if I keep busy, the cancer won't catch up to me! I have a CT Scan on Friday and I think we are all afraid of what the results are going to be. Even my dr mentioned that they might not be good because of my recent surgery or something like that. I have stopped paying attention to be honest. I just do what I am told and go through all the motions like a good girl! I know that the cancer has grown because my numbers have been through the roof! I had been off for a while though and I need to remember that. It is just so easy for the devil to play tricks with my mind. I have been really trying to get into the Word and Jon and I started a prayer journal that we actually have been doing pretty good at keeping up with! I have also started going to the Friday morning ladies Bible study, so what did I expect. Of course Satan would come attacking!! But luckily my God is way bigger than all of this!! He is way bigger than cancer, I know that sounds like a no-brainer, but when you are in this storm, it is sometimes hard to see that!!
If you are still reading this, THANK YOU FRIEND!!! Keep praying for my family, HE IS LISTENING!!!!! Love you all so much!!
Tuesday, September 4, 2012
Life after surgery!
I wanted to let you all know that I am doing very well after my gallbladder surgery! I went into the hospital at 10am (of course I was fashionably late and they were waiting for me!) and was released at 3:30pm! My surgery started at 12pm. When I got home I felt alright, by 10pm, I was feeling really REALLY bad! I made myself wake up every 2 hours to walk around the house. They had told me the more you walk the better you feel because it gets the gas that they fill you up with out! Jon and I took our nightly walk, but only made it a couple houses down!
The next day (Saturday) I was extremely sore and tired! I felt as if someone took a bat to my stomach a couple times. I did muster up the strength to go to Jonny's soccer tournament! He had 2 games that I was able to attend. We also went to lunch in between the games. I did find time in there to take a quick 45 minute power nap! :) Tonight we made it half way for our nightly walk!
Sunday I was feeling even better. I went to church and came home and took a 2 hour nap. After my nap we ran to Lowes and got some supplies to finally paint the hallway. I really wanted to help, but Jon wouldn't let me. So I read my Karen Kingsbury book! HA HA!! I was taught I have to obey my husband right? Tonight we walked our normal distance for our walk!! Getting up from sitting position was a KILLER!!
Monday we almost finished the hall, by we, I mean Jon and my dad!! I pretty much did nothing! I did continue to read! hee hee! By Monday I felt sore still and I was VERY bruised! But much better than Friday night!! We skipped our walk this night
Tuesday was business as usual! Kids back to school, house cleaned, a little shopping, homework, dinner made, soccer, baths, bed for the kids and Internet time for me! I feel like I have been kicked in the ribs and it hurts to breathe deep and I am a little slow getting up and down, but other than that, I am back to my old self! I am back to chemo next week!
UPDATE ON CAYLEE~ we got referred to the head of the pediatric urology depart of CHOC and UCI (yes he is the head of both!) His name is Antoine Khoury! We have an appointment with him tomorrow morning!
Also tomorrow we got Joey an appointment with a Christian counselor!! It took us about 15 phone calls, but finally we found someone whose practice is CHRIST CENTERED!!!! So that is tomorrow evening!
Please keep on praying for my little family! I feel like we are cracking under pressure! So every little prayer matters!
Gotta go on our nightly walk now!! BYE!
The next day (Saturday) I was extremely sore and tired! I felt as if someone took a bat to my stomach a couple times. I did muster up the strength to go to Jonny's soccer tournament! He had 2 games that I was able to attend. We also went to lunch in between the games. I did find time in there to take a quick 45 minute power nap! :) Tonight we made it half way for our nightly walk!
Sunday I was feeling even better. I went to church and came home and took a 2 hour nap. After my nap we ran to Lowes and got some supplies to finally paint the hallway. I really wanted to help, but Jon wouldn't let me. So I read my Karen Kingsbury book! HA HA!! I was taught I have to obey my husband right? Tonight we walked our normal distance for our walk!! Getting up from sitting position was a KILLER!!
Monday we almost finished the hall, by we, I mean Jon and my dad!! I pretty much did nothing! I did continue to read! hee hee! By Monday I felt sore still and I was VERY bruised! But much better than Friday night!! We skipped our walk this night
Tuesday was business as usual! Kids back to school, house cleaned, a little shopping, homework, dinner made, soccer, baths, bed for the kids and Internet time for me! I feel like I have been kicked in the ribs and it hurts to breathe deep and I am a little slow getting up and down, but other than that, I am back to my old self! I am back to chemo next week!
UPDATE ON CAYLEE~ we got referred to the head of the pediatric urology depart of CHOC and UCI (yes he is the head of both!) His name is Antoine Khoury! We have an appointment with him tomorrow morning!
Also tomorrow we got Joey an appointment with a Christian counselor!! It took us about 15 phone calls, but finally we found someone whose practice is CHRIST CENTERED!!!! So that is tomorrow evening!
Please keep on praying for my little family! I feel like we are cracking under pressure! So every little prayer matters!
Gotta go on our nightly walk now!! BYE!
Thursday, August 30, 2012
SURGERY ON FRIDAY!!
On August 12th thru the 17th, We went to Laughlin for our yearly vacation and I had a great time! We did run into some problems, my cousin's boat broke for the first day we were there and then while my family was on the way home, my cousin's dad had a heart attack on the lake! That was scary for all of us! Thankfully the Lord was with him and held him in his loving arms the whole time! He had a surgery while in the hospital in Laughlin and he is now a new man! He is home and feeling a LOT better! Praise God!! But the trip was much needed and thankfully everyone is home safe and sound now!
So, before we left for vacation, we found out that Caylee, our 2 year old daughter had been suffering with a UTI (urinary tract infection) She was put on antibiotics before we left and our doctor told us that it was very uncommon for a child her age to be suffering with UTI's. So the week before we left on vacation, the dr called us and said that the urine sample we dropped off showed that she still had the UTI! He told us he wanted to run a couple of non invasive tests on her and it would have to happen at the hospital. The first test was just a kidney ultrasound. The next test is called a VCUG, basically what they do is stick a catheter inside of her and fill her bladder with a dye until it is almost over filled. They said it would be painful and then very uncomfortable because she will need to pee so badly and can not relieve herself for an hour while they take xrays to see if all her valves are working. After hearing this, I was VERY upset and demanded that they give her some kind of sedation so she is not freaking out screaming for an hour in terror! He said that was fine and he would call the hospital and handle it! He then prescribed a new antibiotic and then we left for vacation for a week. She finished the meds while we were out of town.
August 20th~ It was the Monday after we got back from vacation and I had my ultrasound for my gallbladder. By this time, I had worked myself into thinking my liver was shutting down on me and that was what the pain was. (The gallbladder sits right underneath the liver and is attached to it by a tube, yes that is my scientific word for it! LOL!) Knowing that Caylee had her tests the next day, we decided it would be best if Jon went to work because I really needed him the next day for her. I can handle what they are throwing at me, but I am a blubbering mess when it comes to my kids! So it was just me and my mom that day. I had the ultrasound done and luckily I had a great tech. She said with all that is going on in my life, she wasn't allowed to technically diagnose me but she pretty much told me she had found gallstones! So I was relieved! She said the dr would call me within 2 days to let me know.
August 21st~This was the day we were dreading for 2 weeks. The day we went to the hospital with Caylee and did the kidney ultrasound and the VCUG. Here are a couple of pics from that day
So, before we left for vacation, we found out that Caylee, our 2 year old daughter had been suffering with a UTI (urinary tract infection) She was put on antibiotics before we left and our doctor told us that it was very uncommon for a child her age to be suffering with UTI's. So the week before we left on vacation, the dr called us and said that the urine sample we dropped off showed that she still had the UTI! He told us he wanted to run a couple of non invasive tests on her and it would have to happen at the hospital. The first test was just a kidney ultrasound. The next test is called a VCUG, basically what they do is stick a catheter inside of her and fill her bladder with a dye until it is almost over filled. They said it would be painful and then very uncomfortable because she will need to pee so badly and can not relieve herself for an hour while they take xrays to see if all her valves are working. After hearing this, I was VERY upset and demanded that they give her some kind of sedation so she is not freaking out screaming for an hour in terror! He said that was fine and he would call the hospital and handle it! He then prescribed a new antibiotic and then we left for vacation for a week. She finished the meds while we were out of town.
August 20th~ It was the Monday after we got back from vacation and I had my ultrasound for my gallbladder. By this time, I had worked myself into thinking my liver was shutting down on me and that was what the pain was. (The gallbladder sits right underneath the liver and is attached to it by a tube, yes that is my scientific word for it! LOL!) Knowing that Caylee had her tests the next day, we decided it would be best if Jon went to work because I really needed him the next day for her. I can handle what they are throwing at me, but I am a blubbering mess when it comes to my kids! So it was just me and my mom that day. I had the ultrasound done and luckily I had a great tech. She said with all that is going on in my life, she wasn't allowed to technically diagnose me but she pretty much told me she had found gallstones! So I was relieved! She said the dr would call me within 2 days to let me know.
August 21st~This was the day we were dreading for 2 weeks. The day we went to the hospital with Caylee and did the kidney ultrasound and the VCUG. Here are a couple of pics from that day
This is Caylee getting a ride to her first test, the kidney ultrasound
This is Caylee checking out the machine. The tech was very good with her and let her hold the "Magic Wand and everything, so she could see it wouldn't hurt her!
She was not too sure about this ultrasound stuff, but she didn't shed a tear! She had her blanket and Ariel to keep her company!
This is Caylee and Daddy playing with anything they could find before we had to take her in for the VCUG!
Let me start by saying, I prayed long and hard about this VCUG test! We called CHOC hospital to see if doing this test so quickly after only 1 UTI was overkill, they said no!! They do it everyday to 2 year olds! So, I was ok with it as long as she was getting the sedation. We walk into this room with a huge table and machine and are ready to hand her over. The radiologist starts showing me everything for the test, the catheter, the 2 bottles of dye and then proceeds to tell me how horrible it is going to be for her. I stayed strong. Then the head of the radiology department tells me that it is not St Jude's policy to sedate anyone her age!! So I said, "fine, I will call my Dr and he can tell you its ok to sedate her!" He refused, so, I then refused the test!! We scooped up Caylee and walked out! As we were leaving the 1st radiologist (the lady) said, "You are making the right choice, especially if this is only her first UTI!" I felt confident in my decision and still do! We went home and I was very relieved it was all over!
The next day, I get a call from Dr D's office saying I need to come in and go over the results of my ultrasound. We set it up for Thursday the 23rd. I ask the receptionist if they had found gallstones and she said yes. I said, "So, I will be having surgery soon?" she said, "I think so, but he will go over that at the appointment." I said, "The reason I am asking is because I am supposed to go back to chemo on Tuesday and I need to know whether to cancel it or not!" She said, "Oh! I would imagine that you are going to cancel it, but lets let Dr D handle that!"
August 23rd~ Jon and I went to Dr D's office and he let me know that they found gallstones. Then he said I will be doing the surgery because with Avastin, it would be really bad for me to need emergency surgery if i couldn't pass a gallstone or if my gallbladder got infected. So I figured my surgery would be around September 15th or so! He asked me when my last chemo was. I said this is my 3rd week off of it! He said, "WOW, AWESOME, Your surgery will be on Wednesday or Friday of next week!" My jaw hit the floor! I was not ready for that at all!!I was thinking the middle of September sometime! He gave me my surgery packet and we agreed on Friday the 31st because Wednesdays are early days at the school. Then he made my pre op blood work for Wednesday the 29th at 8:45 am! He asked if I had any questions and then left!
August 27~I had an appt with Dr Paneres just to touch base with everything and get him informed on the surgery and everything He actually surprised me as much as Dr D! He told me he wanted me back on chemo on the 11th of September! WHAT?? I THOUGHT IT WAS LIKE 6 WEEKS AFTER SURGERY!! I already planned a Disneyland trip and everything! but nope!! He wants me back on chemo 10 days after surgery! He said he will just not add avastin on! So I come back to the cancer center on the 10th with chemo on the 11th!! Still going to take that Disneyland trip on the 21st!
August 27th~. We get home from seeing Dr D and I get a phone call from Dr Kim saying Caylee needed to come in and get her report read from the Kidney ultrasound. He also said that she STILL had the UTI and when we came in, he was just going to get a clean specimen by using a catheter! I really wasn't too worried because I had tons of catheters in me while I was in the hospital and it was no big deal! So he said he wanted us in ASAP, he said that that day was not good because he was already booked. So I mentioned Tuesday.... Nope, he was out that day! So you guessed it he made the appointment for Wednesday the 29th at 10:15am, so I have just enough time to get to my appointment and jam home to pick her up for her appointment. I hang up the phone and start to cry.
God says he won't give you more that you can handle, let me tell you, I am reaching my point!! I call Jon and he calms me down! He tells me he will take a FMLA day and go with me to all my appointments. We really are struggling financially, we are behind a couple months on rent and don't even BOTHER looking at the medical bills as they come in! We are barely keeping our heads above water. I am sure a lot of you are saying, "Well, they can afford a vacation and a jam packed summer!" This is true, we scraped together enough money to do a lot of fun things this summer. BUT... Remember, I was told that I am terminal, whether God wants to take me for sure or heal me that is up to him. Right now, my kids deserve all the memories and fun they can get. They are at their boiling point also! They deserve to forget all this that is happening and just have fun like a normal child!!
August 29th~ So we jam to the Outpatient center for St Jude and we get there and we are the only ones there!! So I get my bracelet and they call me back. So the nurse comes in and puts a tourniquet on me and I ask, "Why don't you just use my port, its easier because I have horrible veins!" She told me that she would have to find a different nurse to do it, because she doesn't know how to access a port! So she finally found a vein after about 15 minutes of slapping me in different places (LOL) and then she got the needle in me and that was it!
Then we ran home and picked up Caylee! We headed off to her dr appt. I thought this was going to be a hard appointment, but I had no idea how hard! We get there and get called back and the head nurse, Darlene, said, "Oh! He wanted you guys to come in anyways?" I said, "What are you talking about?" She said, "Didn't the dr call you, we have no catheters right now!" Are you kidding me? Jon and I just looked at each other so annoyed with the whole day. So she said she would go talk to the dr and see what he wanted to do. She came back and the dr told her to go get a catheter from the hospital. So she ran and got one and we waited about 45 minutes in the room. She came back and took Caylee's vitals. Then, the dr came in and showed up the lab results proving she still had the UTI. He then set up for the catheter procedure. We gave Caylee my phone to play the games on it to hopefully get her zoned out where she wouldn't even get what was going on. As soon as the Dr wiped her with the beta dine, she started screaming. He was very calming and let her know he was only cleaning her, he told me she was not in any pain at all! Then he took out the catheter! It was HUGE!! Jon even made a comment that the Dr better never come at Jon with that thing!! He ignored Jon's comment and then he tried inserting the cath into Caylee, he tried and tried and it was a no go!! She was screaming and looking at us in terror! It was the most horrible 10 minutes of my life! So the Dr is totally flustered at this time and he pulls out and says, "OK! You're done! I can't get it! I said, "Well since she is totally clean down there, lets get a clean catch just with the cup right now!" He agreed it was a good idea and we did it! Right away the urine test came back that it was STILL a UTI. So we were prescribed another 14 days of antibiotics and she is being referred to a pediatric urologist through CHOC hospital! As we walked out of the office, I just started crying! It was way too much for me!! I just couldn't wait to get away from that place and get home. So now we are just waiting to hear back from him so we can get her into the specialist!
After we got home from her appointment, we started calling different counselors that the insurance gave us! The problem is, not 1 of them advertised that they were Christian!! So I finally found 1 counselor I REALLY think is a great fit for our family! The problem is, I don't think she is on the list that insurance gave us. We will be calling today and seeing if they will cover the sessions!
Tomorrow morning I have to be at the hospital at 9:50am! My surgery is at 11:50am! I should be done within 3 to 4 hours and then home bound! I really want to get home by the time the boys get home from school! Also, Jonny has a soccer tournament the next day and I REALLY don't want to miss it!
So that is it! You are all pretty much caught up! Please pray for Caylee! I need this to be over! I can NOT concentrate on myself with her being sick too! Pray we find a Christian counselor to help us through all of this. We are all at our breaking point and need someone who will give me Godly advice. So far all the grants we applied for denied us and the one that approved us (that was supposed to pay Caylee's preschool bill monthly) ran out of money and could only give us $100! It was a blessing! But we were expecting to have a $250 a month bill eliminated!! Also, pray for my surgery! I just want to be back on my feet as soon as possible! Remember to keep praying, the Lord is listening!!
God says he won't give you more that you can handle, let me tell you, I am reaching my point!! I call Jon and he calms me down! He tells me he will take a FMLA day and go with me to all my appointments. We really are struggling financially, we are behind a couple months on rent and don't even BOTHER looking at the medical bills as they come in! We are barely keeping our heads above water. I am sure a lot of you are saying, "Well, they can afford a vacation and a jam packed summer!" This is true, we scraped together enough money to do a lot of fun things this summer. BUT... Remember, I was told that I am terminal, whether God wants to take me for sure or heal me that is up to him. Right now, my kids deserve all the memories and fun they can get. They are at their boiling point also! They deserve to forget all this that is happening and just have fun like a normal child!!
August 29th~ So we jam to the Outpatient center for St Jude and we get there and we are the only ones there!! So I get my bracelet and they call me back. So the nurse comes in and puts a tourniquet on me and I ask, "Why don't you just use my port, its easier because I have horrible veins!" She told me that she would have to find a different nurse to do it, because she doesn't know how to access a port! So she finally found a vein after about 15 minutes of slapping me in different places (LOL) and then she got the needle in me and that was it!
Then we ran home and picked up Caylee! We headed off to her dr appt. I thought this was going to be a hard appointment, but I had no idea how hard! We get there and get called back and the head nurse, Darlene, said, "Oh! He wanted you guys to come in anyways?" I said, "What are you talking about?" She said, "Didn't the dr call you, we have no catheters right now!" Are you kidding me? Jon and I just looked at each other so annoyed with the whole day. So she said she would go talk to the dr and see what he wanted to do. She came back and the dr told her to go get a catheter from the hospital. So she ran and got one and we waited about 45 minutes in the room. She came back and took Caylee's vitals. Then, the dr came in and showed up the lab results proving she still had the UTI. He then set up for the catheter procedure. We gave Caylee my phone to play the games on it to hopefully get her zoned out where she wouldn't even get what was going on. As soon as the Dr wiped her with the beta dine, she started screaming. He was very calming and let her know he was only cleaning her, he told me she was not in any pain at all! Then he took out the catheter! It was HUGE!! Jon even made a comment that the Dr better never come at Jon with that thing!! He ignored Jon's comment and then he tried inserting the cath into Caylee, he tried and tried and it was a no go!! She was screaming and looking at us in terror! It was the most horrible 10 minutes of my life! So the Dr is totally flustered at this time and he pulls out and says, "OK! You're done! I can't get it! I said, "Well since she is totally clean down there, lets get a clean catch just with the cup right now!" He agreed it was a good idea and we did it! Right away the urine test came back that it was STILL a UTI. So we were prescribed another 14 days of antibiotics and she is being referred to a pediatric urologist through CHOC hospital! As we walked out of the office, I just started crying! It was way too much for me!! I just couldn't wait to get away from that place and get home. So now we are just waiting to hear back from him so we can get her into the specialist!
After we got home from her appointment, we started calling different counselors that the insurance gave us! The problem is, not 1 of them advertised that they were Christian!! So I finally found 1 counselor I REALLY think is a great fit for our family! The problem is, I don't think she is on the list that insurance gave us. We will be calling today and seeing if they will cover the sessions!
Tomorrow morning I have to be at the hospital at 9:50am! My surgery is at 11:50am! I should be done within 3 to 4 hours and then home bound! I really want to get home by the time the boys get home from school! Also, Jonny has a soccer tournament the next day and I REALLY don't want to miss it!
So that is it! You are all pretty much caught up! Please pray for Caylee! I need this to be over! I can NOT concentrate on myself with her being sick too! Pray we find a Christian counselor to help us through all of this. We are all at our breaking point and need someone who will give me Godly advice. So far all the grants we applied for denied us and the one that approved us (that was supposed to pay Caylee's preschool bill monthly) ran out of money and could only give us $100! It was a blessing! But we were expecting to have a $250 a month bill eliminated!! Also, pray for my surgery! I just want to be back on my feet as soon as possible! Remember to keep praying, the Lord is listening!!
Friday, August 3, 2012
Well, I got some more news to share! The boys are at the men's campout at church and I am sitting here trying to get Caylee to sleep! This child will only go to bed for her father! So I thought I would do an update!
About a week ago, I was at VBS and I started to get what I thought was another panic attack! Like the one on the way home from Vegas. My cousin, Shayla, told me she thought it sounded more like a gallbladder attack. So I went home and suffered for 7 hours straight. Had 2 more that weekend.
On Monday, I went to the dr for my regular 2 week check up for chemo. Told him about the gallbladder attacks and he referred me back to Dr D my surgeon.
I did another round of chemo with Avastin and everything was ok!
Today was my appt with Dr D! He said that he checked all my old CT scans and ultrasounds and I didn't have any gallstones at that time! But I have an ultrasound scheduled for the 20th after we get back from vacation. He said that it could be an ulcer, that the 2 problems mimic each other symptom wise. So if all comes back clear that I don't have gallstones, he will send me over to see my GI doctor to get an endoscopy to make sure I don't have any ulcers.
Please pray that the pain stays away! It was one of the worst pains I have ever been thru and I have had A LOT of pain!! Also, pray that they find something and can fix me quickly! Lastly, pray for my boys to come home safely and that I get some sleep with Caylee!! Thanks!!
About a week ago, I was at VBS and I started to get what I thought was another panic attack! Like the one on the way home from Vegas. My cousin, Shayla, told me she thought it sounded more like a gallbladder attack. So I went home and suffered for 7 hours straight. Had 2 more that weekend.
On Monday, I went to the dr for my regular 2 week check up for chemo. Told him about the gallbladder attacks and he referred me back to Dr D my surgeon.
I did another round of chemo with Avastin and everything was ok!
Today was my appt with Dr D! He said that he checked all my old CT scans and ultrasounds and I didn't have any gallstones at that time! But I have an ultrasound scheduled for the 20th after we get back from vacation. He said that it could be an ulcer, that the 2 problems mimic each other symptom wise. So if all comes back clear that I don't have gallstones, he will send me over to see my GI doctor to get an endoscopy to make sure I don't have any ulcers.
Please pray that the pain stays away! It was one of the worst pains I have ever been thru and I have had A LOT of pain!! Also, pray that they find something and can fix me quickly! Lastly, pray for my boys to come home safely and that I get some sleep with Caylee!! Thanks!!
Saturday, July 21, 2012
Checkin in and doing well!
It has been a while since I have posted, but things have been so busy around here! We went to Las Vegas for a couple days! It was a great get a way! We really needed a little escape. My parents went with us and we got suites at the Stratosphere! We went to see the pawn shop where they film the TLC show Pawn Stars, we visited a couple different hotels and we went down town and what a party that was!! On the way home from Vegas, I ended up having a really bad panic attack, so we didn't stop at Calico like we had planned on doing. But it was a GREAT trip!! This is a picture of me and Joey at the MGM Grand hotel!
We also had a great 4th of July! I told my oncologist I would not be doing my 5-FU (take home chemo) because it would on me for the 4th and I would not ruin my kids holiday! It was such a great day. I had chemo the day before and just prayed for God to get me thru that day! We started off at Jon's brothers house for a BBQ! I made a fruit platter and white chocolate strawberries before we left! It was such a perfect day! Much needed time with his brother Chris, sister in law Angie and niece and nephew, Jenna and Nathan!! They are expecting twin girls in October and we had a fun time trying to come up with names for them! Then we went to my cousin, Shayla's grandmother in law's house (Did you keep up? Her husband's grandmothers) We set off fireworks there and that was also a perfect time! I was EXTREMELY tired when we got home, but I did not get sick!!
Chris brought out his Legos from when he and Jon were little and the kids were busy building the whole time! Yes, Chris and Jon did play with Legos, no they did not fight over them! LOL!
Joey (8yrs), Caylee (2yrs) Jonny (10 yrs)
Aaron, Jonny, Isaiah, Chloe, Joey and Caylee
Well, you are almost caught up in all that we have been up to this summer! For those of you who don't know, I really like Tim McGraw! I have been to 3 of his concerts. Well my best friend, Krista asked me what I was doing on Saturday (July 14th) I said, "Nothing, why?" That in itself is a miracle that I had nothing to do that day! Well, she surprised me and got me a ticket to the Brothers in the Sun concert!! (Tim McGraw and Kenny Chesney) The sad thing is, I have been so out of it with being sick and busy, I didn't even know he was in concert again!!! IT WAS ONE OF THE BEST DAYS/NIGHTS OF MY LIFE!! I did NOT have cancer that day!! I was normal!! I got to be me again! It was an all girls day and I really needed it!! I can not stop thinking about that day! I was a little worried when I found out it was a 7 hour concert. But I made it through it! THANK YOU SO MUCH KRISTA AND TAWNYA!! I will never forget that day!! Here are some pics from that day!
Melissa, Tawnya, Krista and Christianne (me)
Mr. Tim McGraw!!!!! :)
Kenny Chesney
OK... Now we have the medical update. I will make this quick because I just wanted to check in and it is late and I have to help decorate the church for VBS in the morning. Things have been good on the cancer front. My numbers have been steadily dropping and I started Avastin this past week. I did not seem to have any side effects from it thankfully. They said I have about a 50% chance that it will do anything. But with God on my side, its 100%! I tried to put off the Avastin until after we get back from vacation, but it was a no go! I have been feeling really good and I am looking forward to finishing the summer with VBS and vacation. I talked to the dr about my panic attack and let him know that I need to be on something to help with the anxiety. He did give me Xanax, but he told me he also wanted me to go to a psychologist.... YA! LET ME JUST PENCIL THAT IN ON TOP OF EVERYTHING ELSE!!
I have a couple of prayer requests. Our church's VBS is this coming week and we need prayer that everything will go off without a hitch. Also, Jonny, is going to summer camp for a week this coming week. Just pray he stays safe and comes home in one piece. We also applied for some grants to help us financially! We are in dire need that these come through!! Our medical bills are through the roof and there is one grant we are applying for this week that will pay for our child care for Caylee if we get approved!
Thank you to everyone who is still here reading this! LOL! This is why I have not been on here this summer too much, I have been too busy making memories!! God bless you all and thank you for praying for me and my family!!
At the end of the month of June, I threw my cousin, Shayla and her son, Caleb a baby shower!! I had a lot of help thankfully! It was such a special time! I have to show you the cake and some of the decorations, it was so cute!! The theme was Rock Star Monkey. (That is the theme of the nursery also)
We also had a great 4th of July! I told my oncologist I would not be doing my 5-FU (take home chemo) because it would on me for the 4th and I would not ruin my kids holiday! It was such a great day. I had chemo the day before and just prayed for God to get me thru that day! We started off at Jon's brothers house for a BBQ! I made a fruit platter and white chocolate strawberries before we left! It was such a perfect day! Much needed time with his brother Chris, sister in law Angie and niece and nephew, Jenna and Nathan!! They are expecting twin girls in October and we had a fun time trying to come up with names for them! Then we went to my cousin, Shayla's grandmother in law's house (Did you keep up? Her husband's grandmothers) We set off fireworks there and that was also a perfect time! I was EXTREMELY tired when we got home, but I did not get sick!!
Well, you are almost caught up in all that we have been up to this summer! For those of you who don't know, I really like Tim McGraw! I have been to 3 of his concerts. Well my best friend, Krista asked me what I was doing on Saturday (July 14th) I said, "Nothing, why?" That in itself is a miracle that I had nothing to do that day! Well, she surprised me and got me a ticket to the Brothers in the Sun concert!! (Tim McGraw and Kenny Chesney) The sad thing is, I have been so out of it with being sick and busy, I didn't even know he was in concert again!!! IT WAS ONE OF THE BEST DAYS/NIGHTS OF MY LIFE!! I did NOT have cancer that day!! I was normal!! I got to be me again! It was an all girls day and I really needed it!! I can not stop thinking about that day! I was a little worried when I found out it was a 7 hour concert. But I made it through it! THANK YOU SO MUCH KRISTA AND TAWNYA!! I will never forget that day!! Here are some pics from that day!
Mr. Tim McGraw!!!!! :)
Kenny Chesney
OK... Now we have the medical update. I will make this quick because I just wanted to check in and it is late and I have to help decorate the church for VBS in the morning. Things have been good on the cancer front. My numbers have been steadily dropping and I started Avastin this past week. I did not seem to have any side effects from it thankfully. They said I have about a 50% chance that it will do anything. But with God on my side, its 100%! I tried to put off the Avastin until after we get back from vacation, but it was a no go! I have been feeling really good and I am looking forward to finishing the summer with VBS and vacation. I talked to the dr about my panic attack and let him know that I need to be on something to help with the anxiety. He did give me Xanax, but he told me he also wanted me to go to a psychologist.... YA! LET ME JUST PENCIL THAT IN ON TOP OF EVERYTHING ELSE!!
I have a couple of prayer requests. Our church's VBS is this coming week and we need prayer that everything will go off without a hitch. Also, Jonny, is going to summer camp for a week this coming week. Just pray he stays safe and comes home in one piece. We also applied for some grants to help us financially! We are in dire need that these come through!! Our medical bills are through the roof and there is one grant we are applying for this week that will pay for our child care for Caylee if we get approved!
Thank you to everyone who is still here reading this! LOL! This is why I have not been on here this summer too much, I have been too busy making memories!! God bless you all and thank you for praying for me and my family!!
Tuesday, June 12, 2012
Long time no post!!!
Sorry it has taken me so long to update! This round of chemo has really knocked me on my behind!! I do NOT know what it is, but today was the first full day without nausea! So, let me get started with the results from the CT Scan I had!
Monday June 4th~ I had my regular doctor appointment in the morning. I tried all weekend to not think about the results because I have no control of the outcome, only God has that power! I tried to focus on Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough troubles of its own." If I can just live that verse, my life would be SO much less stressful! I spend more time worrying that I would like to admit!! Anyways, we went in to see the dr with Jon and Susie. Last time I had mentioned to him that I would like to skip the 5-FU (take home chemo) on the week of 4th of July and I wanted to take a week off in August to go to the lake without worrying about side effects from the chemo ruining our annual week at Lake Mohave. His response was that we had to wait to see what the results of the scan were. So, we go in and the dr is talking to me about everything BUT the CT Scan results. The normal questions about the side effects from the last chemo, I honestly can't remember the rest. What I do remember is thinking, "WOW! This must be BAD news, he is totally dancing around giving me the results." Finally I asked him about the results and he tells me that they were great!! There was growth, which we totally expected, but it was manageable. I was bummed that the cancer in my lungs grew for the first time, but he said he wasn't worried at all. I had mentioned that today marked my year of finding out about my cancer and he was shocked. He said that I was doing really well and he was pleased with where we were at this time. Susie then brought up going to USC to participate in their clinical trials, and for the first time his response was so upbeat (totally not his normal reaction) He said, "We are not there yet!!" He said that right now we are on a course that is working and we are going to continue on this road for a while. SOUNDS LIKE A PLAN TO ME!! I am still debating the whole Avastin thing, but probably going to go for it. He told me I had about a 5% chance of bowel rupture and having the bag again. I also have asked 3 chemo nurses, 2 were all for it and 1 said if I didn't want a bag for sure again, don't do it! I also asked our former associate pastors wife who is an Oncology PA and she said she would do it! That Avastin has prolonged some of her patients lives by YEARS! So I may be starting that drug along with my chemo this next week. We are so happy and thankful to God for the outcome of this past surgery and CT scan!! THANK YOU JESUS!!!
Tuesday June 5th~ Chemo..... again! Susie took me this time. I just have nothing good to say about chemo! (Other than it, along with God's power, is healing me) I just need to be honest, I just can make myself physically sick by just thinking about it. (I am not the only one, they actually have a name for it and said everyone gets it) So we were there for 4 hours and thankfully, NO ALLERGIC REACTION!! So Susie drives me home and she and my mom both say that I look better than I usually do. The weird thing is, it was the WORST I have ever felt after chemo ever! I usually don't throw up from chemo, but I did that night! My legs felt a million pounds each. All I could do was lay in bed, feeling like death could come snatch me at anytime. It was HORRIBLE!!
So, that is it I think! I have been sick on and off until today. I am feeling a little yucky right now, but I am sure it is because I was just thinking/writing about my chemo. Plus I haven't been sleeping well and it is almost 2 in the morning as I am writing this. I better go to bed!! Keep praying, God is listening and working his miracles on me!!
Monday June 4th~ I had my regular doctor appointment in the morning. I tried all weekend to not think about the results because I have no control of the outcome, only God has that power! I tried to focus on Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough troubles of its own." If I can just live that verse, my life would be SO much less stressful! I spend more time worrying that I would like to admit!! Anyways, we went in to see the dr with Jon and Susie. Last time I had mentioned to him that I would like to skip the 5-FU (take home chemo) on the week of 4th of July and I wanted to take a week off in August to go to the lake without worrying about side effects from the chemo ruining our annual week at Lake Mohave. His response was that we had to wait to see what the results of the scan were. So, we go in and the dr is talking to me about everything BUT the CT Scan results. The normal questions about the side effects from the last chemo, I honestly can't remember the rest. What I do remember is thinking, "WOW! This must be BAD news, he is totally dancing around giving me the results." Finally I asked him about the results and he tells me that they were great!! There was growth, which we totally expected, but it was manageable. I was bummed that the cancer in my lungs grew for the first time, but he said he wasn't worried at all. I had mentioned that today marked my year of finding out about my cancer and he was shocked. He said that I was doing really well and he was pleased with where we were at this time. Susie then brought up going to USC to participate in their clinical trials, and for the first time his response was so upbeat (totally not his normal reaction) He said, "We are not there yet!!" He said that right now we are on a course that is working and we are going to continue on this road for a while. SOUNDS LIKE A PLAN TO ME!! I am still debating the whole Avastin thing, but probably going to go for it. He told me I had about a 5% chance of bowel rupture and having the bag again. I also have asked 3 chemo nurses, 2 were all for it and 1 said if I didn't want a bag for sure again, don't do it! I also asked our former associate pastors wife who is an Oncology PA and she said she would do it! That Avastin has prolonged some of her patients lives by YEARS! So I may be starting that drug along with my chemo this next week. We are so happy and thankful to God for the outcome of this past surgery and CT scan!! THANK YOU JESUS!!!
Tuesday June 5th~ Chemo..... again! Susie took me this time. I just have nothing good to say about chemo! (Other than it, along with God's power, is healing me) I just need to be honest, I just can make myself physically sick by just thinking about it. (I am not the only one, they actually have a name for it and said everyone gets it) So we were there for 4 hours and thankfully, NO ALLERGIC REACTION!! So Susie drives me home and she and my mom both say that I look better than I usually do. The weird thing is, it was the WORST I have ever felt after chemo ever! I usually don't throw up from chemo, but I did that night! My legs felt a million pounds each. All I could do was lay in bed, feeling like death could come snatch me at anytime. It was HORRIBLE!!
So, that is it I think! I have been sick on and off until today. I am feeling a little yucky right now, but I am sure it is because I was just thinking/writing about my chemo. Plus I haven't been sleeping well and it is almost 2 in the morning as I am writing this. I better go to bed!! Keep praying, God is listening and working his miracles on me!!
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