Tumor is STABLE!!!!!
We are glad, but antsy to know if the tumor is even active anymore. We have decided we have to go to Houston for a pet scan. Our local oncologist has suggested we go somewhere else since Vegas pet scan are a bit outdated and quite expensive, $3,500 here in Vegas and in Houston only $1,400 and newer equipment. A pet scan will allow us to find what parts of the tumor have died if any and what parts are active; something that a MRI cannot show.
After explaining to Kassidy that her tumor was stable this time she asked if we could find out, and to tell you the truth, we as well are curious. This tumor could be dying and we just don't know. Her body might not absorb the dead tumor and just leave like scarring that can show on a MRI as tumor like.
We also would like to meet with Dr. Burzynski and hear his plan for Kassidy and ask his opinion, we respect it and he knows what is best. So we will keep you posted on when we decide to leave and go meet with him. I am just glad our little girl has been feeling really well lately!!!!!!!
Keep the prayers coming!!!
Tuesday, April 17, 2012
Monday, April 16, 2012
April 16, 2012
Well, today was the dreaded MRI day!!! Yes, this day has always been so hard on all of us, but always extra hard on Kassidy. This morning she got her morning dose just like always, but after 11:30am she could not have a dose of antineoplaston till after the MRI. I tried to prepare myself mentally the day before to watch Kassidy suffer thru the rest of the morning and while in the tube of the MRI machine. Last MRI was such a nightmare and the worst she's ever felt. But to an amazing surprise she felt great all day!!! :) :) :) Can you believe it?? Kass was even suprised. This has not happened since she started treatment last July!
When we got to Steinberg, we couldn't help to be silly. We joked about everything. She tried to hide from me in the main waiting room, we changed the channel of the master tv in the MRI waiting room when the nurse stepped out for a minute (HA!) , and we even joked about the questionnaire we have to fill out everytime we go in. My heart literally was jumping for joy. I was so excited to see the change that I could almost not contend my happiness. I thank God for the amazing gift today!!!
We are not sure what is different or why the change, but deep in our minds we hope it's a great sign for things to come. We are hoping that the news are stable or reduction. We have noticed quite a change in Kassidy in the last 2 weeks and half; for the better. Yeah, yeah, yeah!!!
She thoroughly enjoyed her Spring Break. She got to help out at the Spring Jamboree Softball Tournament her team hosted at Majestic Park, sit and watch ALL the games her team played in the tournament, and even had a great Easter.
This week also I'm happy to report that she is only on 1/2 mg of decadron morning and night and by God's grace she will be weaned and completely off by next Monday!!! This is big for Kass!
The only disappointment we've had since I last blogged, was last Friday when someone broke into Kass's car and stole so many of her belongings. She was devastated and felt so violated, but again we know that it its just "stuff" and "stuff" can be replaced. That day we were all so angry, but by the next day it just seemed like such a small thing to worry about when there is far more important things to worry about in this world. Plus, we truly believe in karma and that person will get it's own.
When we got to Steinberg, we couldn't help to be silly. We joked about everything. She tried to hide from me in the main waiting room, we changed the channel of the master tv in the MRI waiting room when the nurse stepped out for a minute (HA!) , and we even joked about the questionnaire we have to fill out everytime we go in. My heart literally was jumping for joy. I was so excited to see the change that I could almost not contend my happiness. I thank God for the amazing gift today!!!
We are not sure what is different or why the change, but deep in our minds we hope it's a great sign for things to come. We are hoping that the news are stable or reduction. We have noticed quite a change in Kassidy in the last 2 weeks and half; for the better. Yeah, yeah, yeah!!!
She thoroughly enjoyed her Spring Break. She got to help out at the Spring Jamboree Softball Tournament her team hosted at Majestic Park, sit and watch ALL the games her team played in the tournament, and even had a great Easter.
 |
| Kassidy's Bunny Lala inspecting her Easter basket that the Easter Bunny left her. |
 |
| Our baby girl leading the pack of Centennial Softball girls! |
This week also I'm happy to report that she is only on 1/2 mg of decadron morning and night and by God's grace she will be weaned and completely off by next Monday!!! This is big for Kass!
The only disappointment we've had since I last blogged, was last Friday when someone broke into Kass's car and stole so many of her belongings. She was devastated and felt so violated, but again we know that it its just "stuff" and "stuff" can be replaced. That day we were all so angry, but by the next day it just seemed like such a small thing to worry about when there is far more important things to worry about in this world. Plus, we truly believe in karma and that person will get it's own.
 |
| Karma |
Monday, April 2, 2012
April 2, 2012
It's 3:00am on Monday morning and I'm wide awake. Earlier this evening I was so tired that I guess I set Kassidy's pump wrong. Thank goodness she was awake when both bag 1 & bag 2 of her medication were going at the same time so she came to wake me up. Crap! She shut her pump off and we got it going again. Whewww!
That Wednesday Kass had her bowling banquet to attend. At the banquet she received her white letter for lettering in 3 consecutive sports in a row and also received the “citizenship award.” Take that cancer!!! We were so proud of her. We are not sure sometimes how she does it! I know there were times during the season that she was not feeling well and still muddled through her bowling matches. Ryan and I were so glad she could actually be an active member of the bowling team again this year and help her team get 4th in the Region.
I noticed that it's been awhile since I've updated the blog. March has been challenging one and when I actually write down what is going on in Kassidy's world it just makes it that more real. It's been full of ups and downs, but we all are still trucking along.
The week of the broviach line scare (btw had a scan and the line is fine) was the same week high school softball officially started. Centennial played Foothill high school as a scrimmage game at their home field. This amazing group of young ladies and parents gave Kassidy an amazing surprise. All of the JV team were wearing Kassidy's Army shirts with "11 Strong" on the back and at the Varsity game, the parents were wearing theirs. What a great homage to our girl! Their team has dedicated their season to Kassidy and will be painting their dugout with Kassidisms. This melted my heart! Thank you Foothill girls!!!!!
 |
| 11 Strong! |
 |
| Thank you Foothill Team! |
Our own Centennial Softball also surprised Kass that week by hanging a sign in the outfield showing support for Kassidy’s battle. Such great group of coaches and girls letting Kass know that she is not alone. Thank you also Centennial softball for all you do for Kass! This meant a lot to her, especially that week. She had a bit of frustrating couple of weeks and the reality of this journey thus far had gotten to her.
 |
| Centennial HS Softball Outfield Banner |
 |
| Watching her most favorite game in the world. |
 |
| Getting her "Citizenship Award" |
 |
| Her White Letter! |
 |
| Centennial's JV & Varsity Bowling Team with Coach Seiden |
On Friday, Kyle came home from college. We were all so excited to see him home for spring break. We had already bought his ticket home since we were suppose to go on Kassidy’s Make a Wish trip this last weekend, but had to be rescheduled. The weather in Australia is already getting cold and their winter is commencing. Make a Wish wants to make sure that Kassidy has the trip of a lifetime, so we will be going the week of Thanksgiving which is end of spring and beginning of summer.
Sunday, Kyle and Kassidy entered a junior/adult bowling tournament at Santa Fe Casino. They competed against some pretty good bowlers, but they had a blast just competing together. It was great to watch! Little did we know what the next week had in store. That same weekend we had to have Kassidy’s bowling ball drilled for a bigger hole. Her hands seem a bit swollen, but we did not think much of it. We just thought she had been bowling too much.
At the beginning of the following week, Kass started complaining that her joints hurt quite a bit, but after the Shadow game on Tuesday night she came home and couldn’t even walk and right after dinner proceeded to throw up all of her dinner. L We layed her down in her bed and noticed that her feet, ankles, knees and even hands were extremely swollen. We frieked out! We called the clinic emergency line and the doctor had us elevate her legs and told us if she continued to vomit that she would have to come off treatment and we would have to take her into the hospital. That night we checked on her and iced her limbs. Also, she only threw up that really long episode. which allowed us to keep her on treatment.
Next two days she stayed home from school and she pretty much slept all day long. Her swelling went down, but she battled the 24 hour flu symptoms, at first we thought we would need to up her decadron thinking it was more swelling but glad we didn’t have to. We also took her to the chiropractor that helped her feel much better and by Friday evening she was on the mend.
This Saturday, Ryan and I and a couple friends helped volunteer for the Leadman Triathlon sponsored by Lifetime Fitness. They gave us the opportunity to volunteer and at the same time they donated to Kassidy’s cause. Thank you Lifetime!!! Also, that morning I took Kyle back to the airport so he could fly back to Boise and finish up his first year of college. Crazy, Time flies!!!! He too is on the mend with his stress fracture. He is finally able to go on runs for 40 minutes or less and is doing some physical therapy. His coach has red shirted him for this year indoor track, outdoor track and next year’s cross country. This will allow him to run for four more years and give him time to heal. All of us already miss him, but he should be home soon for summer vacation.
Sunday, Kass has felt great. She went to breakfast & dinner with friends, dyed Easter eggs and hung out. Thank you God! We are so glad and hope and pray that she gets to enjoy her Easter and spring break.
Happy Easter All!
March 24, 2012
We wanted to thank two young men who took on an admirable quest, Ramses Cano & Javier Gonzalez, two ultra marathoners from Panama City, Panama. These young men ran in honor of Kassidy and a boy named Gabe who is also battling cancer (leukemia). They started their run in a little town called Volcan then ran up to the highest peak in Panama called the Baru Volcano (11, 398ft) down to Boquete and then finished in a town called David a total of 118 km or 73 miles. At the highest point in the volcano they knelt down in prayer for both of the kids. Pretty amazing right!
We want them to know that we will be forever grateful for what they did for Kassidy. You see we've never met them, but they were inspired by Kassidy's story. We are thankful that they took this amazing challenge and took Kassidy's name in prayer a little bit closer to God.
 |
| Javier posing with some my aunt's students at her school. |
 |
| Thumbs Up! |
We want them to know that we will be forever grateful for what they did for Kassidy. You see we've never met them, but they were inspired by Kassidy's story. We are thankful that they took this amazing challenge and took Kassidy's name in prayer a little bit closer to God.
 |
| Ramses holding Kassidy's poster at the highest peak of the Volcano. |
 |
| Ramses & Javier, Well Done! |
Monday, March 19, 2012
March 19, 2012
Today started a little exciting. As I went to flush & draw Kassidy's blood for her routine Monday labs the line was not budging. I could not flush or get a blood return. Oh my gosh, here we go again! I tried heparin and the line still would not budge. I even called the infusion room at the Houston Clinic and nothing worked. So I called Dr. Bernstein, Kassidy's local oncologist he instructed me to bring Kass in to the office; which I gladly did, but that meant I could not start Kassidy's 7:30 treatment. She never feels well off.
At the doctor's office, he jiggled the line for a bit and just flushed. Kass jumped in surprise, but not in pain. Sigh!!! He ended up drawing my CBC & CMP tubes for the blood tests I needed to perform and flushed the line with heparin. Nothing I could have not done at home, but so glad he was there to do it just in case something went wrong. We were soooooo thankful that the line started working again and that Dr. B was there to help. Thank you God!
Since the line has been acting a little funny, on Wednesday we will have a line study to make sure the line is still viable. We just pray that it is because we really don't want another catheter port to be surgically removed and a new one installed. The last broviach from January is finally just healing around her chest.
On the way out of the office Kass had to throw up a couple of times and even when we got home. It's amazing how much better she feels on treatment. I even hooked her back up while she was on the bathroom floor just to make her feel better. It took about 45 minutes and she was a different person, so she went to school and then to softball practice to coach the catchers.
A crazy morning ended up being a great day! God is good.
All of you know that we are always looking for new fundraisers to keep raising money to cover Kassidy's medical costs. It's so stressful knowing that we still have not raised enough funds to cover Kassidy's treatment for 2 years. That's why I'm asking for your help!!! We have some big fundraisers ideas in the works.
We would like to again do a Kassidy's Army golf tournament and would love some ideas, raffle donations, & volunteer help. Those of you that would like to help, just have ideas, or have golf contacts, please email us at ryanandmass@aol.com.
Also, on March 31st Lifetime Fitness is putting on Leadman Triathlon in Boulder City. They have agreed to give donations for every volunteer that wants to donate their time. Ryan and I have signed up to help out with Transition #1 or Transition Crew, this is the transition area from the swim to the bike. We are excited that Lifetime has given us this opportunity. Those of you that would like to join us that Saturday morning, please register at the following link and DON'T FORGET to comment you are part of Kassidy's Army.
www.leadmantri.com
Please also check out all the other fundraiser we have ongoing on the left hand side of the blog.
Thank you all for supporting Kassidy!!!!!! We will be forever grateful!!!!
At the doctor's office, he jiggled the line for a bit and just flushed. Kass jumped in surprise, but not in pain. Sigh!!! He ended up drawing my CBC & CMP tubes for the blood tests I needed to perform and flushed the line with heparin. Nothing I could have not done at home, but so glad he was there to do it just in case something went wrong. We were soooooo thankful that the line started working again and that Dr. B was there to help. Thank you God!
Since the line has been acting a little funny, on Wednesday we will have a line study to make sure the line is still viable. We just pray that it is because we really don't want another catheter port to be surgically removed and a new one installed. The last broviach from January is finally just healing around her chest.
On the way out of the office Kass had to throw up a couple of times and even when we got home. It's amazing how much better she feels on treatment. I even hooked her back up while she was on the bathroom floor just to make her feel better. It took about 45 minutes and she was a different person, so she went to school and then to softball practice to coach the catchers.
A crazy morning ended up being a great day! God is good.
All of you know that we are always looking for new fundraisers to keep raising money to cover Kassidy's medical costs. It's so stressful knowing that we still have not raised enough funds to cover Kassidy's treatment for 2 years. That's why I'm asking for your help!!! We have some big fundraisers ideas in the works.
We would like to again do a Kassidy's Army golf tournament and would love some ideas, raffle donations, & volunteer help. Those of you that would like to help, just have ideas, or have golf contacts, please email us at ryanandmass@aol.com.
Also, on March 31st Lifetime Fitness is putting on Leadman Triathlon in Boulder City. They have agreed to give donations for every volunteer that wants to donate their time. Ryan and I have signed up to help out with Transition #1 or Transition Crew, this is the transition area from the swim to the bike. We are excited that Lifetime has given us this opportunity. Those of you that would like to join us that Saturday morning, please register at the following link and DON'T FORGET to comment you are part of Kassidy's Army.
www.leadmantri.com
Please also check out all the other fundraiser we have ongoing on the left hand side of the blog.
Thank you all for supporting Kassidy!!!!!! We will be forever grateful!!!!
Sunday, March 11, 2012
March 11, 2012
It was a great week for Kass until Friday. That morning she woke up with a headache and looked so tired. I kept her home from school that day since it looked like she needed the rest. We weren't sure if it was an allergy headache or just more brain swelling, so I gave her IV decadron and an allergy pill which was kinda of a bummer because we were on our way to weaning her from the decadron. She hates, hates her cheeks right now. Yes I know is temporary, but so hard to explain that to a teenager.
Also, in between ANP treatments I gave her a bag of fluids till it was gone since it looked like she was a bit dehydrated, her lips were pretty chapped. She slept most of the day and the headache pain subsided quite a bit by the late afternoon, but not totally.
That evening we were going to celebrate my nieces 15th birthday at one of the casino ballrooms close to home. Fortunately, we had thought ahead and had gotten a room at the casino which it was being held at, just in case Kass did not feel well. So glad we did!
Kass is not one to enjoy getting dressed up, but she did. She let me do her hair and we went to enjoy ourselves. Kass made it a couple hours and then asked to go back to the room. We were so glad she at least got to enjoy part of the celebration.
The next morning we woke early to go participate in Jaxson's 5k run/1mile walk. We decided to walk with Kass instead of run, but we only made it 100 yards and we looked at her face and saw pain. :( She had instantly gotten her headache back 10x worse. Ugh! We walked her back under the shade and I administered some IV decadron through her catheter right there, but she broke down. She had big tears streaming down her face. My heart instantly broke and I wished that I could take it all away. My poor baby girl! I think it was a combination of headache and frustration that she can't get her body to do what she wants.
We decided to leave, but by the time we got to the car Kass said she felt a bit better and wanted us to take her to Bullhead, Arizona to watch her hs softball team at least play the last game of their tournament. Bullhead is only a little over an hour away, so we agreed.
At the game she got to sit in the dugout and be part of the team. It was great to watch. She even got to ride the bus back with the girls. I can't tell you how much she misses softball! Softball is part of her, but cancer has taken that away from her. I hate you cancer!
This week I ask God to please take these headaches away and give me patience. I also ask to please watch over all those other kids we know that are fighting as well. I ask you to keep them in your prayers as well.
Gage is doing well after surgery, but has been battling gait problems. His parents are anxiously waiting the pathology report results to find what they should do next so the tumor does not come back for a fourth time.
Easton is doing ok this week, but his parents are prolonging his trach surgery till after their vacation so Easton can experience swimming one last time before he has to get a trach.
Jaxson was flown to Boston's Tuft Hospital for pediatric gene targeted therapy (to one of the only dr's in the country doint this, Dr. Burzysnki does it but only adults) because his body could not handle ANP. He's doing better and under the watch of a hospital staff.
Also, in between ANP treatments I gave her a bag of fluids till it was gone since it looked like she was a bit dehydrated, her lips were pretty chapped. She slept most of the day and the headache pain subsided quite a bit by the late afternoon, but not totally.
That evening we were going to celebrate my nieces 15th birthday at one of the casino ballrooms close to home. Fortunately, we had thought ahead and had gotten a room at the casino which it was being held at, just in case Kass did not feel well. So glad we did!
 |
| The girls at our table. |
Kass is not one to enjoy getting dressed up, but she did. She let me do her hair and we went to enjoy ourselves. Kass made it a couple hours and then asked to go back to the room. We were so glad she at least got to enjoy part of the celebration.
The next morning we woke early to go participate in Jaxson's 5k run/1mile walk. We decided to walk with Kass instead of run, but we only made it 100 yards and we looked at her face and saw pain. :( She had instantly gotten her headache back 10x worse. Ugh! We walked her back under the shade and I administered some IV decadron through her catheter right there, but she broke down. She had big tears streaming down her face. My heart instantly broke and I wished that I could take it all away. My poor baby girl! I think it was a combination of headache and frustration that she can't get her body to do what she wants.
 |
| Jaxon's 5k run/1 mile walk |
We decided to leave, but by the time we got to the car Kass said she felt a bit better and wanted us to take her to Bullhead, Arizona to watch her hs softball team at least play the last game of their tournament. Bullhead is only a little over an hour away, so we agreed.
At the game she got to sit in the dugout and be part of the team. It was great to watch. She even got to ride the bus back with the girls. I can't tell you how much she misses softball! Softball is part of her, but cancer has taken that away from her. I hate you cancer!
 |
| Such a symbolic picture, the girls still wear the #11 arm band honoring Kass's fight. Thank you! |
 |
| That smile! |
 |
| I love those girls! |
This week I ask God to please take these headaches away and give me patience. I also ask to please watch over all those other kids we know that are fighting as well. I ask you to keep them in your prayers as well.
Gage is doing well after surgery, but has been battling gait problems. His parents are anxiously waiting the pathology report results to find what they should do next so the tumor does not come back for a fourth time.
Easton is doing ok this week, but his parents are prolonging his trach surgery till after their vacation so Easton can experience swimming one last time before he has to get a trach.
Jaxson was flown to Boston's Tuft Hospital for pediatric gene targeted therapy (to one of the only dr's in the country doint this, Dr. Burzysnki does it but only adults) because his body could not handle ANP. He's doing better and under the watch of a hospital staff.
Monday, March 5, 2012
March 4, 2012
Well I guess it's been awhile since I've updated, just been so tired by the evenings.
We finally received the new pump, we gave in after all the troubles the refurbished has given us. Still learning it a bit and hope to have it running soon. One of the clinic's patients family member made up a video on how to charge, load, & program the new pump. Thank goodness! Between the video and Missy, Gage's mom from Houston, I've been learning little by little.
Kass has had it kinda rough these last few weeks, symptoms seemed to subside and then flare again. It was so frustrating. Her throat was so sore from throwing up so much, we felt so helpless. When we thought we had the symptoms under control they would start again. The clinic suggested we start maybe trying IV decadron, this is a steroid that is directly administered through her broviach catheter/port. We were so scared to give it since if given to fast through her port it can cause immediate vomiting, but we were so cautious and after giving it to her we noticed almost immediate relief of symptoms. They also suggested we get an immediate MRI.
Ryan and I were so worried that it could be tumor growth. So to Steinberg Diagnostics we went! We received the results of the MRI on the following Monday showing that we had a stable tumor. Unlike last time, we were elated and so thankful!!!!! MRI did show a bit of swelling so we upped the dose of decadron a bit to help her with the swelling. Hoping to soon start weening her again, but after she has felt better at least for awhile.
It's been great this last couple of days since she's been able to actually be back to her activities, school, & friends. This weekend was one of the best ones she's had in a long time. She was even able to go to Centennial HS first softball scrimmage game on Friday. It was so great to see her back in softball uniform, but at the same time it pained me to not actually watch her play. But again, she's just so happy to be part of it. My sweet girl!
So we fight on!
We finally received the new pump, we gave in after all the troubles the refurbished has given us. Still learning it a bit and hope to have it running soon. One of the clinic's patients family member made up a video on how to charge, load, & program the new pump. Thank goodness! Between the video and Missy, Gage's mom from Houston, I've been learning little by little.
 |
| Old Pump meet New Pump |
Ryan and I were so worried that it could be tumor growth. So to Steinberg Diagnostics we went! We received the results of the MRI on the following Monday showing that we had a stable tumor. Unlike last time, we were elated and so thankful!!!!! MRI did show a bit of swelling so we upped the dose of decadron a bit to help her with the swelling. Hoping to soon start weening her again, but after she has felt better at least for awhile.
It's been great this last couple of days since she's been able to actually be back to her activities, school, & friends. This weekend was one of the best ones she's had in a long time. She was even able to go to Centennial HS first softball scrimmage game on Friday. It was so great to see her back in softball uniform, but at the same time it pained me to not actually watch her play. But again, she's just so happy to be part of it. My sweet girl!
 |
| Lala the bunny cuddling with Kass |
So we fight on!
Sunday, February 19, 2012
February 19, 2012
It's been another challenging week. On Tuesday, Kass woke up having troubles with her right eye. She couldn't really open it and her pupil looked a little funny. Thank goodness it only lasted a couple minutes and it went away, but she did say it had happened at softball practice the day before. It hasn't happened again that we have noticed so the clinic said to just watch her, but if her symptoms persist that we may need a scan.
On Thursday, she woke up a little flushed, but no fever so she decided to go to school since she felt fine at the time. On my way to the Make-a-Wish offices to do a little visa paperwork for our trip, I got a call from her saying she wanted me to pick her up from school because she was dizzy, throwing up and just didn't feel well. My poor baby girl!
When I got there she was having a hard time walking, very sensitive to light, dizzy, and looked so pale with dark circles under her eyes. I could not understand how her whole persona changed so fast in a matter of two hours. She told me she felt weak like the time her hemoglobin was really low.
So, I decided to get the clinic to fax a CBC order directly to the Quest lab on Burnham so we could wait for immediate results to see if we needed to go to the hospital for a tranfusion. :( I also was instructed to give her a dose of decadron. We went home because she had to throw up, but I actually got her to eat a little soup a bit after so she could take her dose with a little something in her stomach. Thank goodness she didn't throw that up.
After her labs were drawn we waited for the tests results of the CBC with her laying down in my car and I got the idea to call Dr. Milne so he could help me keep her hydrated thru treatment since she didn't really want to drink too much water because it made her nauseated and I was afraid with her still being on treatment it would just dehydrate her and land us in the hospital that night for fluids. So, after we got her test results showed that her hemoglobin and other levels were in normal range. Yipee!!! So we drove to Dr Milne's office. He gave us a bag of saline infused with a little calcium and potassium since the cbc showed she was a little borderline to give to her to help her keep hydrated and make her feel better. YES!!!
I infused the saline in between her treatments until the bag was gone which took two doses, but by late that night she already had color back, she had not thrown up since earlier that afternoon and things seem to be better. I did keep her from school on Friday so she could rest. She slept all day! I guess her body needed it.
Still to this date we are not sure if she was fighting the flu, which could be very possible since it has been going around or just tumor breakdown or tumor growth which both cause brain swelling. I guess we will know better on the next MRI.
Saturday, she finally looked & acted like our Kass again. She wanted to be naughty and have wings. So we decided to comply with her wish. She always eats pretty healthy, but sometimes we have to allow her a little cheating room. On the way to the restaurant she said she didn't feel good again. Oh man, what the heck!!!
Ryan looked at her pump and the stupid thing had not administered her dose, the bags were full. ARE YOU SERIOUS!! Another pump bites the dust, we thought. So Ryan did a couple tricks with it and got it going again. At the restaurant it only took 30 minutes and she already looked better as the dose infused cause of course she didn't want to come back home. I think she was having a little cabin fever. She even looked better after she ate so when we got home we thought we were out of the woods and the pump had just been possessed for one dose.
We weren't so lucky! At her midnight dose, the pump decided to flash system error 6.3. Oh geez, here we go again, have to go ANP ghetto style. Nope, we didn't have enough tubing to do so because we had used the last one to infuse her with the IV fluids on Thursday. Ahhh how did I miss that!! So, Ryan went into McGyver mode. We still had the old pump here at the house so he took some parts from the old one and mismatched it with the current one. Halleluyah, we were doing the happy dance.!!!
He then took the first night dose shift and checked every 30 mins making sure the pump was doing it's job and I took the second shift, but I cheated I decided to sleep right next to her and that way hear for it until her dose was done. So far this morning it has only beeped once, but has worked thus far.
We do know what this means. We have had it with the refurbished pumps; three pumps in three weeks has not been fun. This week we will have to figure out how we can get briefed on the new pump whether it be by skype or if I have to go to Houston for a day.
Please keep us in your prayers that we can figure out the pump situation so Kass can stay on treatment and that her symptoms go away. She still is having a bit of trouble walking, she wall surfs, but we are happy with the improvements and that we have avoided the hospital.
On Thursday, she woke up a little flushed, but no fever so she decided to go to school since she felt fine at the time. On my way to the Make-a-Wish offices to do a little visa paperwork for our trip, I got a call from her saying she wanted me to pick her up from school because she was dizzy, throwing up and just didn't feel well. My poor baby girl!
When I got there she was having a hard time walking, very sensitive to light, dizzy, and looked so pale with dark circles under her eyes. I could not understand how her whole persona changed so fast in a matter of two hours. She told me she felt weak like the time her hemoglobin was really low.
So, I decided to get the clinic to fax a CBC order directly to the Quest lab on Burnham so we could wait for immediate results to see if we needed to go to the hospital for a tranfusion. :( I also was instructed to give her a dose of decadron. We went home because she had to throw up, but I actually got her to eat a little soup a bit after so she could take her dose with a little something in her stomach. Thank goodness she didn't throw that up.
After her labs were drawn we waited for the tests results of the CBC with her laying down in my car and I got the idea to call Dr. Milne so he could help me keep her hydrated thru treatment since she didn't really want to drink too much water because it made her nauseated and I was afraid with her still being on treatment it would just dehydrate her and land us in the hospital that night for fluids. So, after we got her test results showed that her hemoglobin and other levels were in normal range. Yipee!!! So we drove to Dr Milne's office. He gave us a bag of saline infused with a little calcium and potassium since the cbc showed she was a little borderline to give to her to help her keep hydrated and make her feel better. YES!!!
I infused the saline in between her treatments until the bag was gone which took two doses, but by late that night she already had color back, she had not thrown up since earlier that afternoon and things seem to be better. I did keep her from school on Friday so she could rest. She slept all day! I guess her body needed it.
Still to this date we are not sure if she was fighting the flu, which could be very possible since it has been going around or just tumor breakdown or tumor growth which both cause brain swelling. I guess we will know better on the next MRI.
Saturday, she finally looked & acted like our Kass again. She wanted to be naughty and have wings. So we decided to comply with her wish. She always eats pretty healthy, but sometimes we have to allow her a little cheating room. On the way to the restaurant she said she didn't feel good again. Oh man, what the heck!!!
Ryan looked at her pump and the stupid thing had not administered her dose, the bags were full. ARE YOU SERIOUS!! Another pump bites the dust, we thought. So Ryan did a couple tricks with it and got it going again. At the restaurant it only took 30 minutes and she already looked better as the dose infused cause of course she didn't want to come back home. I think she was having a little cabin fever. She even looked better after she ate so when we got home we thought we were out of the woods and the pump had just been possessed for one dose.
 |
| Wing night accompanied with our friend Sandy |
We weren't so lucky! At her midnight dose, the pump decided to flash system error 6.3. Oh geez, here we go again, have to go ANP ghetto style. Nope, we didn't have enough tubing to do so because we had used the last one to infuse her with the IV fluids on Thursday. Ahhh how did I miss that!! So, Ryan went into McGyver mode. We still had the old pump here at the house so he took some parts from the old one and mismatched it with the current one. Halleluyah, we were doing the happy dance.!!!
He then took the first night dose shift and checked every 30 mins making sure the pump was doing it's job and I took the second shift, but I cheated I decided to sleep right next to her and that way hear for it until her dose was done. So far this morning it has only beeped once, but has worked thus far.
We do know what this means. We have had it with the refurbished pumps; three pumps in three weeks has not been fun. This week we will have to figure out how we can get briefed on the new pump whether it be by skype or if I have to go to Houston for a day.
Please keep us in your prayers that we can figure out the pump situation so Kass can stay on treatment and that her symptoms go away. She still is having a bit of trouble walking, she wall surfs, but we are happy with the improvements and that we have avoided the hospital.
Sunday, February 12, 2012
February 12, 2012
On Monday we had a new pump, but by the evening it was beeping saying door 2 open. Poor Kass and I didn't sleep much on Monday night either since the dang pump beeped about 8 times during the night. In the morning, I called the clinic frustrated and they told me that another new pump was on it's way and that they would send me a new manual for me to look over on the new pumps.
I really don't want to have to go to Houston to learn the new pump, but if this 3rd pump keeps giving me troubles I might just have to. These pump that I keep getting are refurbished pumps and since they are smaller and run by double A batteries we've been hesitant in going to the new pump. The new pump requires different tubing, slightly larger, and must be plugged in at night to recharge. This would mean Kass would have to be on an extension chord at night. Not so fun! So far this other pump has been working ok, keeping our fingers crossed. Not a fan of the drip system.
Also, that evening I received a phone call from Nevada Childhood Cancer Foundation (NCCF) letting me know that Kass had been chosen as one of the 5 children to have a special meet & greet with a very famous sports celebrity, but it would be during school hours and they could not tell us who it was because of his high profile.
Ryan and I thought about it and just said "You only live once"! So we let Kass play hookie on Tuesday. Kass & I arrived at Sunrise Hospital Peds floor activity room and waited. Kass was so excited and she didn't even know who was coming. We waited about 30 minutes and in walked Tim Tebow and some of his team line men. What a great surprise! He spent time with each child, took pictures, and signed autographs. How nice to have a sports celebrity doing something good for the world. He has definitely made me a fan.
After we were on our way home I asked Kass if it had been worth it skipping school for the surprise and she said: "Absolutely". It was a good day.
Wednesday, Kass went to softball intramurals to help out. Coaches nominated Kassidy as another coaching member. She has been working with the catchers, getting them ready for softball tryouts. She has been catching for so many years that she has a vast knowledge of drills and workouts. Kassidy was suppose to be Centennial's starting catcher this year and unfortunately she will not be able to play. So she's doing the next best thing. We are so proud of her for making the best out of the situation. Plus she has a group of amazing coaches that are so understanding and supportive.
That day I drove down to the fields to change her medicine bag and I did notice she was having a hard time speaking. I asked her how long had she been having trouble speaking, she said since the morning. I asked her to please come straight home after practice and by the time she got home her speech had improved. Whewwww! Scared me a little.
When Ryan got home, he immediately wanted an MRI. But after more pondering we decided that since her symptoms have improved that we could be patient and wait till March for her next scheduled MRI.
This Saturday Kass also started bowling leagues. She will be bowling on Saturday mornings. She wants to be better for next year season and since softball doesn't conflict, she wants to improve her game. Ryan & I are starting to really enjoy the sport and never knew it could actually be pretty exciting. She and her team won their first league match against a group of boys. Yeah girl power!
PS. We are VERY sad to report that it has come to our attention that a boy has been going door to door representing himself as Kassidy's Army asking for donations to the Centennial area. We would never go door to door asking for donations, so please if you encounter this young man report it to the authorities.
I really don't want to have to go to Houston to learn the new pump, but if this 3rd pump keeps giving me troubles I might just have to. These pump that I keep getting are refurbished pumps and since they are smaller and run by double A batteries we've been hesitant in going to the new pump. The new pump requires different tubing, slightly larger, and must be plugged in at night to recharge. This would mean Kass would have to be on an extension chord at night. Not so fun! So far this other pump has been working ok, keeping our fingers crossed. Not a fan of the drip system.
Also, that evening I received a phone call from Nevada Childhood Cancer Foundation (NCCF) letting me know that Kass had been chosen as one of the 5 children to have a special meet & greet with a very famous sports celebrity, but it would be during school hours and they could not tell us who it was because of his high profile.
Ryan and I thought about it and just said "You only live once"! So we let Kass play hookie on Tuesday. Kass & I arrived at Sunrise Hospital Peds floor activity room and waited. Kass was so excited and she didn't even know who was coming. We waited about 30 minutes and in walked Tim Tebow and some of his team line men. What a great surprise! He spent time with each child, took pictures, and signed autographs. How nice to have a sports celebrity doing something good for the world. He has definitely made me a fan.
 |
| Kass & Tim Tebow |
 |
| With some of the Denver Broncos Line Men |
 |
| A group shot |
After we were on our way home I asked Kass if it had been worth it skipping school for the surprise and she said: "Absolutely". It was a good day.
Wednesday, Kass went to softball intramurals to help out. Coaches nominated Kassidy as another coaching member. She has been working with the catchers, getting them ready for softball tryouts. She has been catching for so many years that she has a vast knowledge of drills and workouts. Kassidy was suppose to be Centennial's starting catcher this year and unfortunately she will not be able to play. So she's doing the next best thing. We are so proud of her for making the best out of the situation. Plus she has a group of amazing coaches that are so understanding and supportive.
That day I drove down to the fields to change her medicine bag and I did notice she was having a hard time speaking. I asked her how long had she been having trouble speaking, she said since the morning. I asked her to please come straight home after practice and by the time she got home her speech had improved. Whewwww! Scared me a little.
When Ryan got home, he immediately wanted an MRI. But after more pondering we decided that since her symptoms have improved that we could be patient and wait till March for her next scheduled MRI.
This Saturday Kass also started bowling leagues. She will be bowling on Saturday mornings. She wants to be better for next year season and since softball doesn't conflict, she wants to improve her game. Ryan & I are starting to really enjoy the sport and never knew it could actually be pretty exciting. She and her team won their first league match against a group of boys. Yeah girl power!
PS. We are VERY sad to report that it has come to our attention that a boy has been going door to door representing himself as Kassidy's Army asking for donations to the Centennial area. We would never go door to door asking for donations, so please if you encounter this young man report it to the authorities.
NEW Fundraisers!!!
Cooking with Kassidy's Army Cookbooks
This cookbook is a compilation of some of Kassidy's favorite recipes as well as friends. One of Kassidy's softball teammate, Jessica Cooper and her mom Vicki Cooper took this project on in June of last year. They did an amazing job of putting a beautiful cookbook filled with amazing recipes and pictures of Kass as well as Kassidy's story. We are so thankful to them since we know it took them months of working hard. Thank you Coopers!
YOU Can ORDER NOW by:
Emailing Vicki at kassidycookbook@gmail.com. She will arrange payment and shipping.
$20/each
Wild Tree Tasting Party
All of you know how important nutrition is to us. My old high school friend Amy Coleman has setup a fundraiser that anyone can get involved anywhere in the country. Wildtree sells natural, healthy and simple ingredients that are easy to prepare without additives, preservatives and artificial flavorings.
You can order online and it will be delivered to you by going on:
Go to SHOP & choose Amy Coleman.
For those of you that live in Lancaster, Pa are welcome to attend the tasting party personally on
February 18, 2012 at 2:00pm
You can contact Stephanie Carzola at 717-381-1899 for more details!
Please also check the Fundraiser tab on the left of the blog for the other ongoing fundraisers. Thank you all, for your support.
Monday, February 6, 2012
February 6, 2012
I am writing today a bit zombie like. We've had quite the week.
Kass was a bit symptomatic this past week, she struggled a bit with nausea. Last Sunday, she came home from an errand and quickly ran to her bathroom, which is not unordinary since she drinks so much water. Soon after, I received a call from her cell asking me to go to the bathroom to help her. She had thrown up all of her dinner. :( So I called the clinic and asked for a refill of her decadron. Decadron made her feel a bit better even though she wasn't so excited with me giving it to her for a day or two, it has made her face a bit swollen again. But I do believe she wanted to make sure she was ok for bowling regional playoffs that week.
Playoffs started on Tuesday and Kass did really well that day, but on the last game that day her whole face changed. She was so nauseated, but just wanted to finish her frames, she made it. She helped her team advance that day to the next day of playoffs. Great job Kass! The next day we played Cimarron HS and lost by 30 pins. We were so proud of all the Centennial Varsity Girls Bowling team, they had a great season and we were so glad Kassidy could take part. Especially, since she can now uncover another year in her letterman's jacket.
Friday, we were so excited to go see the Hope, Strength, & Joy play at the high school to benefit Make a Wish. In the parking lot Kassidy's pump started making the sound that a hospital monitor makes when someone flat lines and it flashed system error 3.3. OH MY GOSH!!!! NOW!!!! I tried all the tricks I've learned and not one worked. UGH! We decided that we would just shut the pump off and skip the dose.
The play was amazing and uplifting, such great talent! Kass being off treatment made it so she could make it thru most of the play without going to the bathroom 500 times. Bonus! After intermission, coach Spencer got up and told Kassidy's story to the crowd. Boy, this brought me to tears. Sometimes reliving those first couple of days is so hard, but it seems like forever ago.
When we got home, Ryan & I went into a bit of panic mode. We had one and half hour before Kassidy's dose needed to start again. I had gotten a crash course from the infusion nurses at the clinic the day we left Houston to come home (truth is I was more focused on coming home that day). They told me that I most likely would never really have to do manual mode, that it didn't happen that often. Ha!!!
Thank goodness I recorded everything they taught me at the clinic to have video libraries as reference. Ryan ran to the computer to get a crash course himself and I was on the phone with Sigma calling their 24 emergency customer support line. Deep in the back on my mind, I knew this pump was done. I just knew it! Sure enough, Steve from Sigma confirmed my fears.
So, Ryan & I watched the video about 5 times to make sure we got it right. Our hearts were beating so fast, we were so afraid to get it wrong and maybe overdose her on either bag 1 or bag 2. We hung the medicine bags on a clothes hanger, figured out the new tubing and the medicine started to drip. We set our clock alarms for every 2 hours, but we really didn't sleep much that night.
Morning came quickly and unfortunately there was no way we could take the clothes hanger and medicine bags with us to the Run for a Wish. Kass didn't want to miss the event and we decided that we would skip the morning treatment. Unfortunately by doing so, she was a bit pale that morning, but she insisted on coming along, her nausea was back. So glad one of our friends let us borrow a wheel chair so she didn't have to walk around, this helped.
When we got there we met the Kassidy's Army team in the middle of Town Square and it was so great to see everyone. Kassidy's Army Team raised a little over $1,900 for Make a Wish and had over 60 walkers and runners. I was so proud to help this great organization that puts smiles on children going thru such hardships in their lives. We cannot wait to have a bigger group next year and make more of a difference. Thank you all that signed up or just showed up to support our team and Make a Wish.
After the race, I had made reservations at Ihop for a small brunch for some of the team members. Everyone except for Kass had knowledge of the surprise we had in store for her. Earlier in the week when I had gone to pick up our team packets at Make a Wish, I spoke to Mary at the office and she reminded me that we needed to start planning. Start planning?????? She informed that Kassidy's WISH had been granted. OH MY GOSH!!!! I couldn't stop smiling.
Last year in July we had met this young man, Justin, who participated in our Kassidy's Army golf tournament. Well he happened to work for Make a Wish as a wish granter. He and another wish granter had met with Kassidy in September to talk about what her wishes were. Never in our wildest dream did we think they would grant her first wish. So I couldn't just tell her, it had to be special.
At brunch we purposely left an empty seat to Kassidy's right. A person dressed up in kangaroo costume came and sat by her, but nobody else on the table made a big deal. She looked at the kangaroo like he had made a mistake by sitting by her. LOL!!!! He proceeded to tell her " Hey mate, would you like some shrimp on the barbie?" HA! She was confused. He finally asked her what he was, she obviously answered kangaroo and then a light lit up on her face. She said, " Oh my gosh, did I get it?" We all yelled and clapped in unison: "Australia". Tears were rolling and smiles all around the restaurant. My heart was happy! It was a perfect moment. So for Spring Break we get to be part of Kassidy's wish as a family, Kyle included! How exciting.
After the race we swung by Everything Medical and got one of those rollie IV poles to hang Kassidy's medicine and help her be more ambulant. When we got home we dialed in the medicine and we were back on track and even figured out the correct rate flow. It has been a pretty tiring weekend waking up so much at night, but it also was such a great weekend. Today I kept Kassidy home since the pump arrives sometime today. Our plan is to have her back tomorrow.
Ohhhh and there's Fedex. I already like this week..........
Kass was a bit symptomatic this past week, she struggled a bit with nausea. Last Sunday, she came home from an errand and quickly ran to her bathroom, which is not unordinary since she drinks so much water. Soon after, I received a call from her cell asking me to go to the bathroom to help her. She had thrown up all of her dinner. :( So I called the clinic and asked for a refill of her decadron. Decadron made her feel a bit better even though she wasn't so excited with me giving it to her for a day or two, it has made her face a bit swollen again. But I do believe she wanted to make sure she was ok for bowling regional playoffs that week.
Playoffs started on Tuesday and Kass did really well that day, but on the last game that day her whole face changed. She was so nauseated, but just wanted to finish her frames, she made it. She helped her team advance that day to the next day of playoffs. Great job Kass! The next day we played Cimarron HS and lost by 30 pins. We were so proud of all the Centennial Varsity Girls Bowling team, they had a great season and we were so glad Kassidy could take part. Especially, since she can now uncover another year in her letterman's jacket.
 |
| Kass in action. |
 |
| Celebrating their 1st day win against undefeated Bonanza HS |
Friday, we were so excited to go see the Hope, Strength, & Joy play at the high school to benefit Make a Wish. In the parking lot Kassidy's pump started making the sound that a hospital monitor makes when someone flat lines and it flashed system error 3.3. OH MY GOSH!!!! NOW!!!! I tried all the tricks I've learned and not one worked. UGH! We decided that we would just shut the pump off and skip the dose.
The play was amazing and uplifting, such great talent! Kass being off treatment made it so she could make it thru most of the play without going to the bathroom 500 times. Bonus! After intermission, coach Spencer got up and told Kassidy's story to the crowd. Boy, this brought me to tears. Sometimes reliving those first couple of days is so hard, but it seems like forever ago.
When we got home, Ryan & I went into a bit of panic mode. We had one and half hour before Kassidy's dose needed to start again. I had gotten a crash course from the infusion nurses at the clinic the day we left Houston to come home (truth is I was more focused on coming home that day). They told me that I most likely would never really have to do manual mode, that it didn't happen that often. Ha!!!
Thank goodness I recorded everything they taught me at the clinic to have video libraries as reference. Ryan ran to the computer to get a crash course himself and I was on the phone with Sigma calling their 24 emergency customer support line. Deep in the back on my mind, I knew this pump was done. I just knew it! Sure enough, Steve from Sigma confirmed my fears.
So, Ryan & I watched the video about 5 times to make sure we got it right. Our hearts were beating so fast, we were so afraid to get it wrong and maybe overdose her on either bag 1 or bag 2. We hung the medicine bags on a clothes hanger, figured out the new tubing and the medicine started to drip. We set our clock alarms for every 2 hours, but we really didn't sleep much that night.
 |
| ANP Ghetto Style |
Morning came quickly and unfortunately there was no way we could take the clothes hanger and medicine bags with us to the Run for a Wish. Kass didn't want to miss the event and we decided that we would skip the morning treatment. Unfortunately by doing so, she was a bit pale that morning, but she insisted on coming along, her nausea was back. So glad one of our friends let us borrow a wheel chair so she didn't have to walk around, this helped.
When we got there we met the Kassidy's Army team in the middle of Town Square and it was so great to see everyone. Kassidy's Army Team raised a little over $1,900 for Make a Wish and had over 60 walkers and runners. I was so proud to help this great organization that puts smiles on children going thru such hardships in their lives. We cannot wait to have a bigger group next year and make more of a difference. Thank you all that signed up or just showed up to support our team and Make a Wish.
 |
| Some of Kassidy's Army Team for the 11th Run for a Wish |
 |
| Softball Girls, love them. |
 |
| Sue, Robin, & Ryan pushed Kass the whole 5k. Way to go! |
 |
| 1st Place Winner, Thomas Johnson, notice his shirt! |
 |
| 3rd Place Winner, Ian Lee, another Kassidy's Army team member. Woot woot! |
 |
| Just a couple of us at the finish line! |
After the race, I had made reservations at Ihop for a small brunch for some of the team members. Everyone except for Kass had knowledge of the surprise we had in store for her. Earlier in the week when I had gone to pick up our team packets at Make a Wish, I spoke to Mary at the office and she reminded me that we needed to start planning. Start planning?????? She informed that Kassidy's WISH had been granted. OH MY GOSH!!!! I couldn't stop smiling.
Last year in July we had met this young man, Justin, who participated in our Kassidy's Army golf tournament. Well he happened to work for Make a Wish as a wish granter. He and another wish granter had met with Kassidy in September to talk about what her wishes were. Never in our wildest dream did we think they would grant her first wish. So I couldn't just tell her, it had to be special.
At brunch we purposely left an empty seat to Kassidy's right. A person dressed up in kangaroo costume came and sat by her, but nobody else on the table made a big deal. She looked at the kangaroo like he had made a mistake by sitting by her. LOL!!!! He proceeded to tell her " Hey mate, would you like some shrimp on the barbie?" HA! She was confused. He finally asked her what he was, she obviously answered kangaroo and then a light lit up on her face. She said, " Oh my gosh, did I get it?" We all yelled and clapped in unison: "Australia". Tears were rolling and smiles all around the restaurant. My heart was happy! It was a perfect moment. So for Spring Break we get to be part of Kassidy's wish as a family, Kyle included! How exciting.
 |
| LOL Classic! |
 |
| Oh now I get it! |
 |
| Australia! |
After the race we swung by Everything Medical and got one of those rollie IV poles to hang Kassidy's medicine and help her be more ambulant. When we got home we dialed in the medicine and we were back on track and even figured out the correct rate flow. It has been a pretty tiring weekend waking up so much at night, but it also was such a great weekend. Today I kept Kassidy home since the pump arrives sometime today. Our plan is to have her back tomorrow.
Ohhhh and there's Fedex. I already like this week..........
Tuesday, January 24, 2012
January 24, 2012
What a great week thus far! Whewwwww, so glad!
It started this past weekend when Kass felt great, she had great energy and just looked good! She'd had a rough past week with finals and stress, but during the weekend was able to catch up with some school work she needed to finish for missing school from her surgery.
Monday, came with a little bit of anxiety since we had a follow up appointment with our local oncologist. Last time we met with him was last July, right after we came back from Houston. He really did not agree with the antineoplaston treatment we chose for Kassidy, but he respected our right to choose the treatment we believe is right for her; unlike our first oncologist here in town. We were suppose to go see him every 3 months, but we've been so hesitant.
Anyways, the appointment went better than what I ever expected. He was impressed with Kassidy's 20% reduction thus far, her neurological test improvement since the last time he saw her, & that she's doing well of decadron (steroid). He commented on how good she looked many times. This made Kass & I smile beyond belief. He did say he would like to see her every 3 months and if we need anything to please not hesitate and call. Ok, ok we won't wait so long between appointments.
By the time we got to the car we were dancing the jiggy and smiling from ear to ear. I'd say "mission accomplished"! Hope that we have started to pave the way for future pediatric cancer patients.
Today was another great day, Kass was back to her first bowling match since her port/catheter surgery against Shadow Ridge HS, which we won! It's been a bit of a challenge to practice bowling since her port site has been quite sore still, so she cannot wear her backpack on her left shoulder; she's been bowling holding her backpack with her left hand. But we found a sling backpack that did the trick today, that she can wear across her right shoulder. Success!
Next week is going to be eventful for the whole family. It's Make-a-Wish week. Centennial HS is putting on a play on Feb 2nd & 3rd at 6:00pm and Kassidy will be featured as the Make-a-Wish kid for the event and on Feb 4th is 11th Annual Run for a Wish 5krun & 1Mile Walk at Town Square which our team Kassidy's Army is proudly ranked 5th as of today.
Please come and join us for EITHER event, the play is only $10 at the door & to participate for the run $22 or walk $20. Your participation will help Kassidy and other kids fighting life threatening illnesses.
To register for the run or walk click this link:
http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1000585&lis=1&kntae1000585=04D18E427AD344E98EF8DD70903261B9&team=4930563
http://www.carepages.com/carepages/rockshelterdeliverer
We also want to share the great news with you about other Burzynski patients we have kept contact with:
Laura's tumor has shrunk an amazing 56%. Check out the video! Amazing! Way to go Laura.
http://www.hopeforlaurafund.co.uk/blog/item/interview-with-dr-burzynski-about-laura
Hannah tumor has also started shrinking and she's only been on treatment barely a month. Check out her video.
http://teamhannah.com/blog/
It started this past weekend when Kass felt great, she had great energy and just looked good! She'd had a rough past week with finals and stress, but during the weekend was able to catch up with some school work she needed to finish for missing school from her surgery.
Monday, came with a little bit of anxiety since we had a follow up appointment with our local oncologist. Last time we met with him was last July, right after we came back from Houston. He really did not agree with the antineoplaston treatment we chose for Kassidy, but he respected our right to choose the treatment we believe is right for her; unlike our first oncologist here in town. We were suppose to go see him every 3 months, but we've been so hesitant.
Anyways, the appointment went better than what I ever expected. He was impressed with Kassidy's 20% reduction thus far, her neurological test improvement since the last time he saw her, & that she's doing well of decadron (steroid). He commented on how good she looked many times. This made Kass & I smile beyond belief. He did say he would like to see her every 3 months and if we need anything to please not hesitate and call. Ok, ok we won't wait so long between appointments.
By the time we got to the car we were dancing the jiggy and smiling from ear to ear. I'd say "mission accomplished"! Hope that we have started to pave the way for future pediatric cancer patients.
Today was another great day, Kass was back to her first bowling match since her port/catheter surgery against Shadow Ridge HS, which we won! It's been a bit of a challenge to practice bowling since her port site has been quite sore still, so she cannot wear her backpack on her left shoulder; she's been bowling holding her backpack with her left hand. But we found a sling backpack that did the trick today, that she can wear across her right shoulder. Success!
 |
| Centennial HS Girls Bowling Team (Ugh she's hiding from me) |
 |
| Varsity Girls ready to Bring It! |
 |
Please come and join us for EITHER event, the play is only $10 at the door & to participate for the run $22 or walk $20. Your participation will help Kassidy and other kids fighting life threatening illnesses.
To register for the run or walk click this link:
http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1000585&lis=1&kntae1000585=04D18E427AD344E98EF8DD70903261B9&team=4930563
We also would like to ask to keep Gage in your prayers. His MRI is tomorrow and we are all hoping for great news. Little Gage is the one that started antineoplaston treatment same time we did. This baby has been fighting off and on for a long time. It's his turn.
We also want to share the great news with you about other Burzynski patients we have kept contact with:
Laura's tumor has shrunk an amazing 56%. Check out the video! Amazing! Way to go Laura.
http://www.hopeforlaurafund.co.uk/blog/item/interview-with-dr-burzynski-about-laura
Hannah tumor has also started shrinking and she's only been on treatment barely a month. Check out her video.
http://teamhannah.com/blog/
Thursday, January 19, 2012
January 19, 2011
MRI OF THE BRAIN AND CERVICAL SPINE - (01/17/12 compared with 11/16/11)
The follow-up study again shows multifocal enhancing lesions in the brainstem, mainly involving the medulla, as well as the upper cervical spinal cord, representing the patient's known neoplasm. These lesions appear unchanged in size as well as intensity of enhancement when compared with the previous study. There is stable, mild mass effect on the fourth ventricle. No new abnormal enhancement or signal is present. There is a stable, mild hyperintensity signal in the cerebellar region bilaterally. It is not associated with any abnormal enhancement. No midline shift is present. Ventricles are unremarkable. No hydrocephalus is identified. The rest of the brain parenchyma does not show any abnormal enhancement or signal.The rest of the cervical spine does not show any abnormal signal.The following measurements are expressed in centimeters:T1 SAGITTAL: ENHANCED
1) Medulla, anterior 1.7 x 0.8 = 1.36
2) Medulla, posterior 2.7 x 0.8 = 2.16
3) Cervical spine 4.0 x 1.0 = 4.0
_____
7.52 (unchanged since previous)
(20% decrease since baseline)IMPRESSION:
1) There are stable, multifocal enhancing lesions in the lower brainstem and upper cervical spinal cord.
2) No new lesion is identified.
In normal people terms: Tumor is stable!
Yes, this is good news, but I am so impatient.
Today, I was reminded by Dr. Burzynski & Dr. Acelar that we were not expected to see any reduction in the tumor for at least 4 to 6 months; as we were told in the beginning. Kassidy's tumor is slow growing it will take a longer time for the tumor to respond to the antineoplaston treatment. Her labs are showing signs of breakdown which is great and that the tumor could be breaking down from the inside out and that's why we cannot see it just yet. Dr. B feels that Kassidy is responding well and that we just need to have patience.
Ugh, patience a virtue I need to work on.
I was truly hoping to hear the word "reduction". It's just so hard to see reduction, reduction, stable, stable. I just want this tumor gone forever. I want Kassidy to get her life back. I cannot lie, but my disappointment was just too much yesterday. Thank goodness for an amazing husband that comes to my rescue. This journey without him, I don't think I could bear alone. He reminded me also about what Dr B had said at the beginning. Patience Massiel!!! Deep breaths....
Kass took the news great, this eased my disillusion. She was ok with the results. Ah this kid is my hero. God gave me an amazing, strong, young lady. She teaches me everyday what it is to be persevere.
Yesterday was also another demonstration that we are not in control, God is. Thank you for the reminder, heavenly father. I sometimes forget in my state of hysteria.
So we continue treatments and everything else that comes with it. We just know that we have a kid that goes to school, participates in sports, drives; living life and on her road to recovery. We wouldn't want it any other way.
Thank you all for your prayers!
Tuesday, January 10, 2012
January 10, 2012
What a day!!!!!!! We are all truly exhausted!!!
This morning I woke up early to get Kassidy's morning dose ready. When I went to flush her line with saline the line made a LOUD horrifying pop and she woke with a loud "Ouch that hurt". I immediately called the doctor and I was transferred to the infusion nurses to talk me through it. They asked me to see if there was a blood return on the line and there was, but when I went to flush again, I only got 2 cc of saline when Kassidy winced in pain again and a weird gurgling sound from the line. UGH! We were told we would need to go the the ER to check catheter placement & to make sure the catheter was still intact, that I would have to take her off treatment.
So to the ER we went. Thank goodness Summerlin Hospital PEDS was not busy, they took us right in. Nurses & doctors were wonderful. I didn't have to explain why we chose the treatment we did instead of regular chemo or radiation. It kinda gets old everytime we go to the ER and try to explain what & why is Kassidy on a treatment that doctors don't really know about. They immediately took Kass for an iodine test, where they injected iodine into her port and took a scan of chest. It didn't take long for the radiologist to tell me that the port was not to used and she would need surgery to replace it. NO!!!!!
Ryan came to meet us and by 11:30 we were in an OR meeting our surgeon. He explained that by looking at Kassidy's scan he was worried that the line was in such poor shape and would snap in two when he tried to remove it, that the part that goes straight to her heart would recoil inside the vein and that he would not feel comfortable going after it. Oh my gosh! So he would have to have the radiologist help fish it out. So we put trust in him and God and send our girl to surgery.
While sitting in the waiting room, Kyle came over to bring us some lunch since he had been doing his workout earlier. But when he came in he came in with a limp. Oh wow! He proceeded to tell us that ever since he had kinda twisted his ankle on Friday he had been running different and that now the front of his foot hurt. Well, since his podiatrist happens to have her office at Summerlin Hospital I told him he should go see if she would look at it while we waited. She did! Love Dr. Pollitz. He had an x-ray and sure enough, a break. A stress fracture in his fourth right toe. REALLY GOD!!! What do we need to learn again???? What have we missed???? So my poor boy leaves tomorrow with a broken foot in a boot and completely disappointed he cannot participate in his first indoor track meet on Saturday. The positive, is that his white blood count came up to normal, but his iron is still through the roof about his new lab tests. Doctor suggested the he should have it checked again while he's in Boise to see where it's at then. Hopefully, he can stay away from the hematologist. Cause we are not sure we could take much more bad news.
The surgeon came out about an hour and half to two hours to let us know that Kassidy's surgery had gone well. He didn't have any problem removing the old line. Thank you God! He did have to make an incision above the collar bone to be able to make sure no debris was left behind and better access. He made another insertion site for the new catheter and inserted a new broviach port catheter which is suppose to be a little thicker and a little more durable than the Hickman she had before.
When we went to the recovery she was dazed, but smiling. I love that about her. She can be in the worst place, but still smiles. We waited for her double vision, nausea, and stoned look to wear out and we brought our babies home.
Thank you all for your prayers and good thoughts, I truly believe they helped us today through this most crazy day of all and to keep it together. We still trust that God has guided us through this path for something that someday we will learn it's true purpose. But tonight I just hold my babies close and hope that Kassidy and Kyle heal fast so they get on with what they suppose to do in life.
This morning I woke up early to get Kassidy's morning dose ready. When I went to flush her line with saline the line made a LOUD horrifying pop and she woke with a loud "Ouch that hurt". I immediately called the doctor and I was transferred to the infusion nurses to talk me through it. They asked me to see if there was a blood return on the line and there was, but when I went to flush again, I only got 2 cc of saline when Kassidy winced in pain again and a weird gurgling sound from the line. UGH! We were told we would need to go the the ER to check catheter placement & to make sure the catheter was still intact, that I would have to take her off treatment.
So to the ER we went. Thank goodness Summerlin Hospital PEDS was not busy, they took us right in. Nurses & doctors were wonderful. I didn't have to explain why we chose the treatment we did instead of regular chemo or radiation. It kinda gets old everytime we go to the ER and try to explain what & why is Kassidy on a treatment that doctors don't really know about. They immediately took Kass for an iodine test, where they injected iodine into her port and took a scan of chest. It didn't take long for the radiologist to tell me that the port was not to used and she would need surgery to replace it. NO!!!!!
Ryan came to meet us and by 11:30 we were in an OR meeting our surgeon. He explained that by looking at Kassidy's scan he was worried that the line was in such poor shape and would snap in two when he tried to remove it, that the part that goes straight to her heart would recoil inside the vein and that he would not feel comfortable going after it. Oh my gosh! So he would have to have the radiologist help fish it out. So we put trust in him and God and send our girl to surgery.
 |
| Kass before being wheeled out to the OR |
 |
| Kyle's new boot :( |
When we went to the recovery she was dazed, but smiling. I love that about her. She can be in the worst place, but still smiles. We waited for her double vision, nausea, and stoned look to wear out and we brought our babies home.
 |
| The incision, the new port site, and the old port site to the right of the new one. OUCH!! |
Thank you all for your prayers and good thoughts, I truly believe they helped us today through this most crazy day of all and to keep it together. We still trust that God has guided us through this path for something that someday we will learn it's true purpose. But tonight I just hold my babies close and hope that Kassidy and Kyle heal fast so they get on with what they suppose to do in life.
January 9, 2012
"God doesn't give you more than you can handle" Right! We sure don't feel that way sometimes. On New Years Eve I was so excited that we had two weeks of a wonderful Christmas break. But the first Monday of the New Year came with the craziness of the hemoglobin again. Dr. Acelar called to let us know that Kass's hemoglobin was at a critical 6.4, but she was not really showing extreme signs. So, we ran to a 24 Quest Diagnostics instead of the ER since we were just not up for a 7 hour visit just to retest her labs. Her blood was taken again and in an hour we had the lab results and her hemoglobin was back up to 10. We were so elated that we didn't have to take her to the ER for a transfusion, but we were wore out and just wanted to come home. The emotional roller coaster is sometimes so exhausting.
Kass returned to school that week, but had to stay home the day after. I could tell she wasn't feeling well because she knew if she missed that day she would have to miss her bowling match that day. Her stomach was giving her troubles and she slept all day that day. Thank goodness it only lasted a day and she was back to school the next day.
Also, during the week we had the chance to go eat a wonderful 5 course meal cooked by Chef Marc from Parma Restaurant located on Buffalo & Washington. Nevada Childhood Cancer Foundation arranged for our whole family to eat at his restaurant. We had a wonderful time and the meal was amazing. Anyone looking for a good italian restaurant we suggest their caprese salad, brick oven pizza, & marsala chicken, they were all delish. Thank you Chef Marc & Nevada Childhood Cancer.
On Friday before New Years, we had taken Kyle to get some routine labs that his college running coach asked us to do to make sure he's eating the right things since he's putting in some serious miles a week. Well, the doctor called to speak to him since he's now 18 they would not talk to us. He informed him that Kyle's iron levels are more than normal and his white blood count are below normal, that he would like to retest his levels again in a week before he might have to refer him to a hematologist. WHAT!!!!! Ryan & I were thrown for a loop. Like I said, does God really not give you what you can handle, because at that moment our hearts sank. Did God forget about us? Are we even strong enough to worry about the health of another child? We called his doctor back after Kyle gave them permission to speak to us. We also contacted some doctor friends and they told us to wait till the next battery of blood tests before we worried too much, so that's what we tried to do during this weekend. Early Friday morning I took Kyle to get another set of blood samples at Quest, but during the weekend we tried to stay busy to forget about the crazy week.
Ryan and I decided it was time to have Kassidy redeem her Christmas gift which we had a very hard time deciding if it was the right thing to do. She's been wanting a tattoo for the longest time, but after she got diagnosed she asked us if she could get a "Never Give Up" tattoo. It took us a couple months to ponder the answer, but we decided that it would be a great reminder for her in the future on how to live the rest of her life. That no matter what hurdle or problem she would come across in her future that she can press on and Never Give Up.
On Sunday, we also redeemed another Christmas present we had given the kids. A ride on the Fremont Street Experience Flightline or Zipline. Kids were a little nervous, but they had a great time. It was a great way to end the weekend.
Today, Kass had a good day. She went to school and had a bowling match against Legacy High School, who are ranked pretty close to Centennial. Well the first game was a nail bitter, but the Centennial girls won by 9 points. The other two games weren't as close and Centennial won those as well. It was great to see the girls compete so well. Kass averaged a 158 today and she was pretty happy, since she feels her medicine backpack and bowling are starting to become one.
Tomorrow we are hoping for good news with Kyle, especially since he leaves for college on Wednesday. We are leaving it in the hands of our Heavenly Father. Keep us in your prayers!
Kass returned to school that week, but had to stay home the day after. I could tell she wasn't feeling well because she knew if she missed that day she would have to miss her bowling match that day. Her stomach was giving her troubles and she slept all day that day. Thank goodness it only lasted a day and she was back to school the next day.
Also, during the week we had the chance to go eat a wonderful 5 course meal cooked by Chef Marc from Parma Restaurant located on Buffalo & Washington. Nevada Childhood Cancer Foundation arranged for our whole family to eat at his restaurant. We had a wonderful time and the meal was amazing. Anyone looking for a good italian restaurant we suggest their caprese salad, brick oven pizza, & marsala chicken, they were all delish. Thank you Chef Marc & Nevada Childhood Cancer.
 |
| Kassidy posing with Chef Marc |
Ryan and I decided it was time to have Kassidy redeem her Christmas gift which we had a very hard time deciding if it was the right thing to do. She's been wanting a tattoo for the longest time, but after she got diagnosed she asked us if she could get a "Never Give Up" tattoo. It took us a couple months to ponder the answer, but we decided that it would be a great reminder for her in the future on how to live the rest of her life. That no matter what hurdle or problem she would come across in her future that she can press on and Never Give Up.
 |
| Kass & Chelsa in front of the Tattoo Place. Their family friend did the tattoo & they also paid for it. |
 |
| She said it felt like getting hit by a softball many times. Being a catcher she said that was old news. |
 |
| And there it is! |
 |
| Kass & Jason after it was all done. |
On Sunday, we also redeemed another Christmas present we had given the kids. A ride on the Fremont Street Experience Flightline or Zipline. Kids were a little nervous, but they had a great time. It was a great way to end the weekend.
 |
| Before riding the elevator up to the zipline. Looking a bit scared. |
 |
 |
 |
| Kyle loved it & Kass glad it was over. LOL |
Today, Kass had a good day. She went to school and had a bowling match against Legacy High School, who are ranked pretty close to Centennial. Well the first game was a nail bitter, but the Centennial girls won by 9 points. The other two games weren't as close and Centennial won those as well. It was great to see the girls compete so well. Kass averaged a 158 today and she was pretty happy, since she feels her medicine backpack and bowling are starting to become one.
Tomorrow we are hoping for good news with Kyle, especially since he leaves for college on Wednesday. We are leaving it in the hands of our Heavenly Father. Keep us in your prayers!
Subscribe to:
Posts (Atom)