Okay so it seems like yesterday we started this blog...really it has gone by so fast. I knew it would. I remember at the beginning freaking out when a day would end...just scared that one more was gone.
I am not the same girl I was. I gave a talk on Sunday and while preparing I thought of how much I have changed. I am a completely different person today. I think it is for a better.
Okay my hair...having a little problem with it. I actually want to cut it...shorter but I know that my Joshua would not appreciate it. He wants my long locks back...don't blame him...I did look pretty good. I just want to keep it short until the "patch" grows back...then the grow out can begin. For now I will leave it as it is...happy husband makes me happy.
My Chol is gone too...seriously it was more hard this time than any other. We had a pretty good summer but an awesome last week. I got to see her everyday and hear all about her life. I love talking to her. Josh just says that I love talking! :) Ha, he is probably right! In fact, I know he is right. I just love people and I love talking to them...most of the time! :)
I see that my momma has already given to good news about the scan... so I will just continue my rambling...I am probably seem to like rambling more than talking! :)
Today on the doorstep I had two boxes of baby stuff...I am still perplexed as to why it is here...no credit card changes or anything. I don't have a baby and I don't go on baby sights. I am not pregnant and I do not wish to own baby formula or products. Anyone who has a baby want this stuff...there is two big boxes of it...not really sure what it is but it is going in the trash unless someone speaks up.
Now on to my final ramble about my pointless doctor visit today. I saw a urologist. Shapiro wanted me to because of the kidney stone I passed. Just when we thought we had taken out a few doctors we get a urologist. I think I am fine and so does he but he still needs blood work, a urine sample, and an ultrasound. I really wish all these doctors could share! I am becoming quite the pro at filling out paperwork. I decide what is important and what is not. They ask for my medical history and I decide that they don't need it. I simply write GBM. They had no further questions...worked like a charm! So know we have a new doctor who is pointless. Kinda fun to have one of those...all the others are kinda important.!
Ward Pool Party tonight (aka..free food for Josh and I tonight!) I actually completely submersed my head today in water. First time since February. I actually forgot what it felt like. I washed my hair with shampoo instead of anti-bacterial soap. We are making huge progress here! It is so nice to be able to wash my hair in the bath instead of bathing and then getting dry and dressed only to get soaked when I wash my hair in the sink.
Okay enough rambling...I am hungry.
T
Wednesday, August 24, 2011
Sunday, August 21, 2011
MRI
Becky again....
The MRI last Tuesday was actually BETTER than the one 2 months ago. There are these white areas on an MRI called "enhancements" which is area the dye goes to where tissue or something builds up. This small area of enhancement was visible last MRI; but gone this time. Last December when we were quite scared about too much white showing on the MRI; it turned out to be dead tissue from radiation; which was only possible to figure out via surgery. Anyway, this was good news this week - especially since Tara was worried because she had been having bad headaches for awhile; which can worry her. So, we happily showed Tara's head to Dr. Smith who agreed with Dr. Joganic that her head is healed - although the skin is very thin; it is still covering the wound which is fabulous! Dr. Shapiro prescribed more chemo - which she started on Thursday.
Tuesday night after spending most of the day at St. Joseph's Hospital Tara & Josh returned that night with kidney stones of all things! I bailed on this visit; by the time I got their phone call they were already checking in the ER; so Josh handled this one. Poor Tara - how much can a body handle? Really, now!!! She had kidney stones about 5 years ago; and man oh man, it looked so painful then and it was painful for her again this time. So, they gave her some more hardcore pain meds to get through it and hoped she would pass the kidney stone. Well, it took 4 days! She finally passed it last night; just in time to stand up in front of a young single adult congregation this morning and give, might I add, a very moving talk. So, now she only has chemo sickness to deal with. BUT, at least it's only ONE thing to deal with. No more saline flushes, heprin flushes, antibiotics, sanitary gloves, alcohol wipes, or various other supplies need to be in our house. They're all going in the TRASH.
Guess how many chemo treatments after this one??? 2!!!! That thought keeps me going. Tara wants more - I want her to feel better again - I dream of that day - so 2 more treatments here we come! After 14 supposed months of treatment (which has turned out to be longer because of the brain infections) we WILL finish. Like Tara said in her talk today, she will WIN and beat this cancer. Guess what else? We splurged and planned a cruise for Dec 17-24 to the British Virgin Islands to celebrate the end of Tara's treatment! I still have to buy the plane tickets; but the cruise is BOOKED. Merry Christmas Schlappis! I was so very sad that Tara couldn't even get in the water at Lake Powell; that we really just wanted to do something else that she could totally enjoy when this is all finished. She'll have 6 weeks to try to recover from all this chemo before the trip. Hopefully that's enough time to get enough medication out of her body that she can enjoy herself. She'll still have seizure medication that makes her tired; but she can alternate between sleeping on the beaches and swimming and snorkeling in those beautiful blue waters of the Caribbean! The chemo is starting to pile up (cumulative effect) and she's sick longer and more often; but that's to be expected. I, for one, just cherish the good days even more. The end is in sight!!! Then we have done all the doctors know how to do and Tara is in the Lord's hands. I, of course, will throw homeopathic treatments Tara's way and try to do everything we can to help fight this tumor and discourage it from ever returning.
One more thing.... we did indeed give away the quilt; but we have no pictures yet; so we've been waiting to meet the recipient and get pictures; and it's been tricky; so hopefully they will be forthcoming. Just know it went to a very special little girl. All we know right now is that an 11 girl named Lilly was in one of Arizona Oncology's Clinics; and her grandmother bought her a single raffle ticket. Lilly is fighting a bone tumor and is having a rough time undergoing radiation and chemotherapy. Terri Thomas, one of the foundations organizers, took some tickets to the 2 clinics she works at and sold some tickets. When Dr. Shapiro drew out the winning ticket last month; Tara & I were initially disappointed that "one of our people" didn't win the quilt; but after finding out a little about the winner; we were very happy. We believe the quilt is where it should be and I hope it will provide some cheer to Lilly. We are hoping to meet her; but her mother has not returned calls yet - so the whole privacy thing has to be sorted out first.
The MRI last Tuesday was actually BETTER than the one 2 months ago. There are these white areas on an MRI called "enhancements" which is area the dye goes to where tissue or something builds up. This small area of enhancement was visible last MRI; but gone this time. Last December when we were quite scared about too much white showing on the MRI; it turned out to be dead tissue from radiation; which was only possible to figure out via surgery. Anyway, this was good news this week - especially since Tara was worried because she had been having bad headaches for awhile; which can worry her. So, we happily showed Tara's head to Dr. Smith who agreed with Dr. Joganic that her head is healed - although the skin is very thin; it is still covering the wound which is fabulous! Dr. Shapiro prescribed more chemo - which she started on Thursday.
Tuesday night after spending most of the day at St. Joseph's Hospital Tara & Josh returned that night with kidney stones of all things! I bailed on this visit; by the time I got their phone call they were already checking in the ER; so Josh handled this one. Poor Tara - how much can a body handle? Really, now!!! She had kidney stones about 5 years ago; and man oh man, it looked so painful then and it was painful for her again this time. So, they gave her some more hardcore pain meds to get through it and hoped she would pass the kidney stone. Well, it took 4 days! She finally passed it last night; just in time to stand up in front of a young single adult congregation this morning and give, might I add, a very moving talk. So, now she only has chemo sickness to deal with. BUT, at least it's only ONE thing to deal with. No more saline flushes, heprin flushes, antibiotics, sanitary gloves, alcohol wipes, or various other supplies need to be in our house. They're all going in the TRASH.
Guess how many chemo treatments after this one??? 2!!!! That thought keeps me going. Tara wants more - I want her to feel better again - I dream of that day - so 2 more treatments here we come! After 14 supposed months of treatment (which has turned out to be longer because of the brain infections) we WILL finish. Like Tara said in her talk today, she will WIN and beat this cancer. Guess what else? We splurged and planned a cruise for Dec 17-24 to the British Virgin Islands to celebrate the end of Tara's treatment! I still have to buy the plane tickets; but the cruise is BOOKED. Merry Christmas Schlappis! I was so very sad that Tara couldn't even get in the water at Lake Powell; that we really just wanted to do something else that she could totally enjoy when this is all finished. She'll have 6 weeks to try to recover from all this chemo before the trip. Hopefully that's enough time to get enough medication out of her body that she can enjoy herself. She'll still have seizure medication that makes her tired; but she can alternate between sleeping on the beaches and swimming and snorkeling in those beautiful blue waters of the Caribbean! The chemo is starting to pile up (cumulative effect) and she's sick longer and more often; but that's to be expected. I, for one, just cherish the good days even more. The end is in sight!!! Then we have done all the doctors know how to do and Tara is in the Lord's hands. I, of course, will throw homeopathic treatments Tara's way and try to do everything we can to help fight this tumor and discourage it from ever returning.
One more thing.... we did indeed give away the quilt; but we have no pictures yet; so we've been waiting to meet the recipient and get pictures; and it's been tricky; so hopefully they will be forthcoming. Just know it went to a very special little girl. All we know right now is that an 11 girl named Lilly was in one of Arizona Oncology's Clinics; and her grandmother bought her a single raffle ticket. Lilly is fighting a bone tumor and is having a rough time undergoing radiation and chemotherapy. Terri Thomas, one of the foundations organizers, took some tickets to the 2 clinics she works at and sold some tickets. When Dr. Shapiro drew out the winning ticket last month; Tara & I were initially disappointed that "one of our people" didn't win the quilt; but after finding out a little about the winner; we were very happy. We believe the quilt is where it should be and I hope it will provide some cheer to Lilly. We are hoping to meet her; but her mother has not returned calls yet - so the whole privacy thing has to be sorted out first.
Tuesday, August 9, 2011
More of our Adventures
Okay back again to finish the catch up!
I know I ramble tons but this has also become my personal journal so I have to write down more than just what happens in surgeries and what the silly doctors say…I get to document my wonderful life!
So where were we…oh yes, I think I finished Girls Camp and then took my mom’s post and put it below mine… sorry momma!
I actually started going back to work after camp because I was feeling so well. It felt so good to get off that couch and actually do something productive. The only downside is the more I move…the more energy I use and the more energy I use the more food I need and the real problem lies there…I don’t like eating. So there I was being a good little cancer crusher eating a nice healthy lunch when doctor Kumi (the one I cannot understand) calls. All was hunky-dory until he called and told me I could not go to Lake Powell!!! WHATTTT no lake?? I was the one who got to pick this family vacation and he was trying to tell me I could not go. Maybe I cried a bit…after all, I thought my family would be going on the dream vacation without me!!! Kumi didn’t quite know how stubborn and persistent my mother and I are…he soon learned! Needless to say miracles surrounded me and I was able to go. I can’t wait to put a wonderful picture of the creation I got to wear on my head so water did not touch my precious wound. When I say miracles…I literally mean it…more than one! It was not only the wound that had to head but also the body that needed to escape infection, the port that had to be changed by a doctor who actually knew how to who was on our insurance, the medicine that could only last a few days and had to be kept cold and shipped periodically throughout our vacation, and the supplies that took more room to pack than my personal things for 2 weeks!! Oh and we had to make sure we had sterile water and cleaning supplies at the lake…lake water comes out of the faucets and there is no way that was going to work. One miracle after another solved our minuet problems and I was cleared by every doctor to head to the Lake. Doctor Smith even told me to “live a little, put your feet in the water”. That is what living a little is?? Ha! I decided not to “live a little” and stayed safely dry all week long thanks to my wonderful head arrangements and towels. We went with the Brian and Carrie Smith family (practically our extended family) and had a blast. I had fun playing mafia and cards with those who were left behind on the house boat and even got on the speed boat a time or two just to watch the “mad air” that the wake-boarders got.
There was no way that we were going to stop our fun there! We then went back to page to get my port changed and then straight to Cedar City for a family reunion where I got to share my drugs with the broken armed and meet all these new cousins I never knew I had! Putting a helmet on was out of the question because of the wound so I got to relax back at the cabin while everyone else got literally lost in the mountains. I waited to be daring until my father was gone so he could not protest and until the riders knew their way around a bit. We made up another perfect “thingy” to protect my beautiful healing head and went on an easy…well what we call easy…ride to Strawberry Point where others looked down in awe and I trembled in fear of heights… I am as bad as my dad when it comes to heights. Me and heights just don’t get along. The rest of that adventure continued without a problem but why stop there!!!
Nest we went to Logan, Utah to see the Bodrero family and to celebrate my birthday. Josh had not seen his cousins in a while and I had a lot t meet. I had an unforgettable birthday song sung by the Larsens and actually memorized all their names…Josh get working on the Schlappi side and good luck! We had fun eating Creamies and spending time with Grandma and Grandpa. Medicine was delivered cold and we were having so much fun being away from doctors that we decided to stay with my Uncle in Fairview, Utah on the way home where I had my personal highlight of the trip. I got to ride me a horsey! I love horses, always have, always will. I used to ride every year for my birthday when my great grandpa was alive and now thankfully Tyler has taken over. It seriously is my favorite thing ever and we did not ride a silly trail either. We decided to blaze our own through the mountains. The mountains were covered with yellow and purple flowers and when we rode through sometimes my feet would brush the tops of the greenery. Ol Amiga behaved herself and leapt a few times just to give me an extra thrill. Next to my love for horses is my love for dogs and it just so happens that Tilly picked up three new lab puppies the day before we got there… I think I was in heaven! We played with the puppies, milked Bumblebee the goat and were treated to nice cold goat milk! Josh was sold on it as soon as he learned he could drink it and not get sick. He is lactose intolerant so he always gets sick with dairy products. We used the goat milk for our alfredo sauce and Josh is now doing research trying get his hands on his own goat!
So things accomplished in this trip include
No emergencies
“max air” for the lakers
Port change smoothly
Visit Grandma Bodrero, Great grandma Bodrero, Grandma Stratton, Grandma Schlappi and Grandma mom (just wanted to add another grandma and remind my mother she is a grandma!!! )
Brig, Tara, Summer birthdays complete with candles and birthday songs
Safe quad ride
Puppies
Extended family
Tutor for ACT with successful outcomes!! Yay Larsens
Horses (Josh’s first ride…rode like a pro!)
Beautiful mountains
Learn wonderfulness of goats and their milk
Lots of love and hugs from all family!
Okay now I am more caught up. Wow that was long. 1106 words and counting… it was much harder to write this much on English papers!
Sorry this is forever and a day long!
Love
The one and only
ME
Sunday, August 7, 2011
Girls Camp, Lake Powell, Cedar City, Logan, Fairview and GOATS!!!
Well it has most certainly been more than a month since I have written I think. Sorry! it looks like my mother has filled you all in a bit. I think since last time I wrote I have been in surgery and been to Girls Camp, Lake Powell, Cedar City, Logan, Fairview. I have grown one year older and most definitely wiser too! :) Wow my life is hard eh?? :) Of course it was a miracle that I was able to be gone more than a week and through this whole time (minus the surgery) everything has been pretty smooth. It was so nice to spend a good amount of time away from all those doctors.
My life has definitely changed in the past month starting with Girls Camp.
I remember going last year...that is when I had to realize the severity of my cancer and what it could possibly mean. This experience was a complete 180 from last. I got to have so much fun and I got to realize what I have really learned in that year. I actually found a little journal entry from that day last year in my scriptures. Back then I was so scared to die and that was all I could think about. I was too scared that my life was going to be ruined because of this cancer. I saw it all as a horrible curse and really viewed it only as a disease. Soon after I did some serious soul searching and have learned a lot about me and my Heavenly Father. This girls camp my journal entry was much different. Instead of focusing on the hard parts of this cancer I got to focus on all the good things.
Okay I must go back to two days before Girls Camp even started. My mother did not want to go to girls camp...she wanted to stay home with me and make sure I would be okay...remember I had surgery the previous week. Being the stubborn piece of work I am I continued to tell my mother to go to camp and pack her bags. My momma's stubborn too and made it known that she would not be leaving me. That's when I knew I needed to go to girls camp. I really wanted to anyway so it was a good thing anyway. Sunday afternoon President Baudin came over... and I knew exactly why he was there. He was going to ask me to go to Girls Camp!!! My little heart was so happy to be invited to go. He asked to sit down and talk for a while. I got a little dissapointed after a few minutes because he was just interested in how my family was doing...I was scared I wasn't going to get to go afterall. Then he looked me in the eyes and told me he felt prompted to ask me to go to Girls Camp and I could hear the angels singing. I promptly said yes! I knew he was coming! I told my mom to go pack those bags she didn't want to pack! Man I love being right!!! Mom's going to girls camp...ahhh I just knew it. I practically danced around the house until Tuesday finally came. I wanted to go up early with Dad Monday but I guess the doctors wanted to see me before I went...:) We had planned all the doctors visits around Girls Camp before because we thought my mom was going so it all worked out perfectly. They said as long as I did not roll around in the dirt I could go! I have never been so excited to pack for girls camp! I arrived with no responsibilities or restrictions! I had full access to the freezer filled with ice cream and could do whatever I wanted!! Can it get better? I got to walk around from cabin to cabin and take naps whenever I felt needed! I did not have to go the hike or clean a single bathroom. I did not have to plan anything either. It was the most relazing girls camp ever. I was just to try to make people happy! I like that job.
President told me that I would probably get a chance to speak to the girls at one time or another. He did not tell me for how long or what day or what topic. He just said I would get to speak. I am actually suprised that this did not make me nervous. I usually like to have everything that I am going to say written word for word on a paper because I know that I am a rambler and my thoughts are not always completely coherent... evident in this passage I assume. Wednesday night came around and I happened to be earing dinner with the Stake Presidency. This is when President asked me what I thought the girls were supposed to hear this year. I thought "wait, isn't that your job President...to receive revelation and tell me what to speak on??" I guess not!! :) I had actually pondered a bit about what I would say to the girls previously so when he asked me I jut said the word that was written the biggest on my thought list. It was actually the very last thing I wrote on my list and I wrote it in the very middle and then circled it. I know that it is what they needed to hear and knowing that has taught me so much. Looking back I realize that I can recieve inspiration when my heart is in the right place. I thought that I would be speaking on Thursday night but then President through me for another loop and asked me to speak that very night...in about 30 minutes. I realized that there was no way I was going to have anything written down so I decided to prepare my heart instead of a paper. I had a good prayer and then relaxed and did not think about it again until we pulled into the fourth level camp. I had one word to go off, "temples". The greatest thing is that I have had experience with the temple and more importantly the spirit was there. I was able to stand in front of all those beautiful girls and tell them what I felt the Lord needed them to hear along with my strong testimony of temples. I guess it went well because President asked me to do it again the next night in front of all the girls. I was a little worried about doing it again...how could I replicate what I felt and what I said...I had not prepared anything. So of course the next night was much different but I believe it was still special and most importantly, the spirit was there. I could see princesses that were one day to be queens and I saw all the potential in their eyes. Of course I bawled and confessed my love for hugs so afterwards I got a hug from at least 50% of the girls. I will forever cherish those hugs. I will never have an experience like that. Those hugs made cancer worth it...they made all my pain worth it. I will never ever forget my time at Girls Camp and pray that I can go again next year. Young men are amazing but young women...ahh just a little bit better! :) I think I connect with them better. I sure hope I can go again next year. This girls camp changed my life and I only hope and pray that I could have helped someone else. I know why I am still here...I can help people. I also know why I want to stay here...so I can help again and hug more young girls and have more experiences like I had this June. I wish I could have stayed forever. My life has much more meaning now. I feel like I am doing something good in this world. I feel like I can do something good for my Heavenly Father. I know he loves his daughters...I love them too.
Brownies are done... I will finish the rest of my adventures later!! :)
Much Love
Tara
Becky again....
Yesterday was a wonderful "doctor day". 9:30 we went to Dr. Kumi (infectious disease) who said Tara can get OFF her antibiotics as of Wednesday. He wanted to put her on a pill form until her next MRI (next week) but I reminded him they make her SICK. Honestly, do these doctors not know how yucky people feel while on their meds? I made Tara tell Dr. Kumi how sick she's been while on this drug, and then he said, "are you sure it's from this drug?" Really, after almost 5 months of antibiotics, I think Tara would know what makes her sick... anyway, he said she can stop! Tara has been especially sick the last 2 weeks, and I, for one, and very much looking forward to NO MORE antibiotics and I know Tara will enjoy not having a bottle attached to her chest for 4 hours a day. (these are IV antibiotics) So, we did NOT make a return appointment with Dr. Kumi!!!
Next, Dr. Joganic (plastic surgeon). He put his hefty magnifying glasses on; looked at Tara's incision; and proceeded to take ALL the stitches out! All of them! This is the 1st time in 5 months stitches have come out without a residual, non-healing, scab on top of Tara's head (which equates to a hole in the head). This is the 1st time since February that we have gone to the dr, and not had surgery again within that month. Dr. Joganic said Tara's head had "completely epithelialized" guess what that means? The dictionary says "completely cover with epitheliam" which is SKIN. It's the outer layer of skin on the brain for all you non doctor people. Dr. said this was starting to epithelialize last month; but yesterday he had no worries about her head and reassured us it was healing. There were a few spots I was still bothered by; but Mr. Magnifying Glass said he wasn't bothered or worried, so that's good enough for us! Yea!!!! No return appointment for Dr. Joganic, either! 2 doctors out of our life! We really love our doctors; but when we don't have to see them, that is awfully good news. We don't even have to see Dr. Smith; but we want to - so next week when we go for the MRI (Tuesday) we will stop by and have him rejoice as well with the condition of Tara's scalp. He's the doctor above all who encourages Tara to "live a little." He told her at Lake Powell to "put her feet in the water and live a little." (although she didn't do that regardless - she was so careful about water).
I was pretty much dancing out of Barrows, and Tara had goosebumps. Last month she got all teary eyed when Dr. Joganic said her wound looked good and was healing as well. That is really music to her ears!!
So, we have Dr. Shapiro, Dr. Smith, and an MRI next week. We're trying not to worry - it's always a bit of a worry at MRI time - but we have to remember that faith knocks away fear, must remember and remember that. Tara has had some bad headaches lately, but I reminded her last night that Dr. Smith said those weren't a sign of the tumor reoccuring - her tumor would have to be large to have that happen; and with constant MRI's, he doesn't think that would be the case. Tara just can't have a headache without a little concern. Normal people can have headaches, but I guess Tara will never be normal - we all know she's extremely special, not just normal!!!
My life has definitely changed in the past month starting with Girls Camp.
I remember going last year...that is when I had to realize the severity of my cancer and what it could possibly mean. This experience was a complete 180 from last. I got to have so much fun and I got to realize what I have really learned in that year. I actually found a little journal entry from that day last year in my scriptures. Back then I was so scared to die and that was all I could think about. I was too scared that my life was going to be ruined because of this cancer. I saw it all as a horrible curse and really viewed it only as a disease. Soon after I did some serious soul searching and have learned a lot about me and my Heavenly Father. This girls camp my journal entry was much different. Instead of focusing on the hard parts of this cancer I got to focus on all the good things.
Okay I must go back to two days before Girls Camp even started. My mother did not want to go to girls camp...she wanted to stay home with me and make sure I would be okay...remember I had surgery the previous week. Being the stubborn piece of work I am I continued to tell my mother to go to camp and pack her bags. My momma's stubborn too and made it known that she would not be leaving me. That's when I knew I needed to go to girls camp. I really wanted to anyway so it was a good thing anyway. Sunday afternoon President Baudin came over... and I knew exactly why he was there. He was going to ask me to go to Girls Camp!!! My little heart was so happy to be invited to go. He asked to sit down and talk for a while. I got a little dissapointed after a few minutes because he was just interested in how my family was doing...I was scared I wasn't going to get to go afterall. Then he looked me in the eyes and told me he felt prompted to ask me to go to Girls Camp and I could hear the angels singing. I promptly said yes! I knew he was coming! I told my mom to go pack those bags she didn't want to pack! Man I love being right!!! Mom's going to girls camp...ahhh I just knew it. I practically danced around the house until Tuesday finally came. I wanted to go up early with Dad Monday but I guess the doctors wanted to see me before I went...:) We had planned all the doctors visits around Girls Camp before because we thought my mom was going so it all worked out perfectly. They said as long as I did not roll around in the dirt I could go! I have never been so excited to pack for girls camp! I arrived with no responsibilities or restrictions! I had full access to the freezer filled with ice cream and could do whatever I wanted!! Can it get better? I got to walk around from cabin to cabin and take naps whenever I felt needed! I did not have to go the hike or clean a single bathroom. I did not have to plan anything either. It was the most relazing girls camp ever. I was just to try to make people happy! I like that job.
President told me that I would probably get a chance to speak to the girls at one time or another. He did not tell me for how long or what day or what topic. He just said I would get to speak. I am actually suprised that this did not make me nervous. I usually like to have everything that I am going to say written word for word on a paper because I know that I am a rambler and my thoughts are not always completely coherent... evident in this passage I assume. Wednesday night came around and I happened to be earing dinner with the Stake Presidency. This is when President asked me what I thought the girls were supposed to hear this year. I thought "wait, isn't that your job President...to receive revelation and tell me what to speak on??" I guess not!! :) I had actually pondered a bit about what I would say to the girls previously so when he asked me I jut said the word that was written the biggest on my thought list. It was actually the very last thing I wrote on my list and I wrote it in the very middle and then circled it. I know that it is what they needed to hear and knowing that has taught me so much. Looking back I realize that I can recieve inspiration when my heart is in the right place. I thought that I would be speaking on Thursday night but then President through me for another loop and asked me to speak that very night...in about 30 minutes. I realized that there was no way I was going to have anything written down so I decided to prepare my heart instead of a paper. I had a good prayer and then relaxed and did not think about it again until we pulled into the fourth level camp. I had one word to go off, "temples". The greatest thing is that I have had experience with the temple and more importantly the spirit was there. I was able to stand in front of all those beautiful girls and tell them what I felt the Lord needed them to hear along with my strong testimony of temples. I guess it went well because President asked me to do it again the next night in front of all the girls. I was a little worried about doing it again...how could I replicate what I felt and what I said...I had not prepared anything. So of course the next night was much different but I believe it was still special and most importantly, the spirit was there. I could see princesses that were one day to be queens and I saw all the potential in their eyes. Of course I bawled and confessed my love for hugs so afterwards I got a hug from at least 50% of the girls. I will forever cherish those hugs. I will never have an experience like that. Those hugs made cancer worth it...they made all my pain worth it. I will never ever forget my time at Girls Camp and pray that I can go again next year. Young men are amazing but young women...ahh just a little bit better! :) I think I connect with them better. I sure hope I can go again next year. This girls camp changed my life and I only hope and pray that I could have helped someone else. I know why I am still here...I can help people. I also know why I want to stay here...so I can help again and hug more young girls and have more experiences like I had this June. I wish I could have stayed forever. My life has much more meaning now. I feel like I am doing something good in this world. I feel like I can do something good for my Heavenly Father. I know he loves his daughters...I love them too.
Brownies are done... I will finish the rest of my adventures later!! :)
Much Love
Tara
Becky again....
Yesterday was a wonderful "doctor day". 9:30 we went to Dr. Kumi (infectious disease) who said Tara can get OFF her antibiotics as of Wednesday. He wanted to put her on a pill form until her next MRI (next week) but I reminded him they make her SICK. Honestly, do these doctors not know how yucky people feel while on their meds? I made Tara tell Dr. Kumi how sick she's been while on this drug, and then he said, "are you sure it's from this drug?" Really, after almost 5 months of antibiotics, I think Tara would know what makes her sick... anyway, he said she can stop! Tara has been especially sick the last 2 weeks, and I, for one, and very much looking forward to NO MORE antibiotics and I know Tara will enjoy not having a bottle attached to her chest for 4 hours a day. (these are IV antibiotics) So, we did NOT make a return appointment with Dr. Kumi!!!
Next, Dr. Joganic (plastic surgeon). He put his hefty magnifying glasses on; looked at Tara's incision; and proceeded to take ALL the stitches out! All of them! This is the 1st time in 5 months stitches have come out without a residual, non-healing, scab on top of Tara's head (which equates to a hole in the head). This is the 1st time since February that we have gone to the dr, and not had surgery again within that month. Dr. Joganic said Tara's head had "completely epithelialized" guess what that means? The dictionary says "completely cover with epitheliam" which is SKIN. It's the outer layer of skin on the brain for all you non doctor people. Dr. said this was starting to epithelialize last month; but yesterday he had no worries about her head and reassured us it was healing. There were a few spots I was still bothered by; but Mr. Magnifying Glass said he wasn't bothered or worried, so that's good enough for us! Yea!!!! No return appointment for Dr. Joganic, either! 2 doctors out of our life! We really love our doctors; but when we don't have to see them, that is awfully good news. We don't even have to see Dr. Smith; but we want to - so next week when we go for the MRI (Tuesday) we will stop by and have him rejoice as well with the condition of Tara's scalp. He's the doctor above all who encourages Tara to "live a little." He told her at Lake Powell to "put her feet in the water and live a little." (although she didn't do that regardless - she was so careful about water).
I was pretty much dancing out of Barrows, and Tara had goosebumps. Last month she got all teary eyed when Dr. Joganic said her wound looked good and was healing as well. That is really music to her ears!!
So, we have Dr. Shapiro, Dr. Smith, and an MRI next week. We're trying not to worry - it's always a bit of a worry at MRI time - but we have to remember that faith knocks away fear, must remember and remember that. Tara has had some bad headaches lately, but I reminded her last night that Dr. Smith said those weren't a sign of the tumor reoccuring - her tumor would have to be large to have that happen; and with constant MRI's, he doesn't think that would be the case. Tara just can't have a headache without a little concern. Normal people can have headaches, but I guess Tara will never be normal - we all know she's extremely special, not just normal!!!
Saturday, August 6, 2011
Girl's Camp 2011
Becky again...... so sorry you aren't hearing from Tara - I know it's on her TO DO list to write on her blog sometime this weekend; but it's been way tooo long; so I'm going to fill in some of the gaps of the last month from my perspective. Tara may cover many of the same things; but as you have learned, we have different perspectives. I know her writing makes you smile, cry, and laugh, and mine is mostly informational - but even information these days is sadly lacking.... so I'll start and Tara can finish!!!
My last post was somewhat depressing..... I'll have to admit I was NOT at all looking forward to weeks of antibiotics again. So, I'll start with the Sunday after that post. This was the 1st Sunday in July. Let's just say we have an amazing Stake President who really does listen to the Spirit and is where the Lord wants him to be when He wants him to be there! Sunday evening President Bawden stopped by our home (about 7 pm - I'm sure he had been gone since 6 am that morning) just to visit us. He felt impressed to come by. Tara & Josh were at our home for Sunday dinner that evening. Scott, Tara & I stepped in the living room to talk with him (we knew he came to see Tara) and the first thing he said to any of us was to me and it was, "How are you doing, Becky?" "You don't seem to have your usual sparkle." Tears instantly flowed down my face. Lynette Bayles calls this face of priesthood leaders the "Bishop face". Same thing happened to her when Scott asked her how she was doing one day - and REALLY meant "how are you doing?!" Anyway, President Bawden knows what it feels like to be the one watching a loved one suffer - he's BEEN there and I know he knows. We proceeded to talk for a bit - mostly Tara talked to Pres. Bawden and her spirit was shining through (nothing unusual for Tara). She was in a much better spot that I was; she was still positive and talking about how she's learning through all of this. Now I have to preface my next comments with some info. One of my husband's responsibilities in our church is to oversee the girls' camp for the 12-18 year old girls in our stake. It's held once a year. I told him this year I would go with him and help cook or do whatever was needed of me because Nate would be gone that week to EFY (Especially for Youth - a church camp) and I might as well get out in the mountains; be of some service, and be with him since there were no "kids" to mother that week. That Wednesday I had decided not to go to girls' camp. Tara was in her "couch" mode - feeling just too sick and blue to do anything at all; and although it would make Tara really really mad for me to stay home from camp because of her; that's exactly what I was going to do anyway. I know there are so many others who would happily step in and help in any way they could; but my crazy mother's heart just can't stand the thought of Tara feeling crappy without me trying to do something if I could. Too many times there is absolutely nothing I can do but just see her be sick; but even if that's the case; I didn't want to be away from her. Is this co-dependancy? I don't know... anyway, Tara had in her secret little heart wanted to go to girls' camp also; and I had thoughts about her going and was wishing the stake leaders would ask her to go; because I knew how much she loved girls' camp and I believed that there were girls there she could touch; but girls' camp is not something you just invite yourself to and say, "hey, by the way, I feel like I should come and be with the girls and help somehow". You have to have a job, a role, a reason for going.
President Bawden, after visiting with Tara, and seeing her great spirit shine forth, said that he felt impressed to invite Tara to girls' camp. The hugest smile broke out on Tara's face and she just KNEW it. Just knew that she was supposed to go. Bear in mind that she had been feeling really yucky after the June 29 surgery. President asked her if she could make the trip; and she said yes, but she wasn't too sure about leaving Josh. So, President visited with Josh also; and Josh was his wonderful, supportive, self and encouraged Tara to take this opportunity. Tara was all smiles, and this meant that I, as well, would be going to camp. Tara & I both received priesthood blessings that evening. From that moment on, Tara's strength steadily started to improve., and my spirits improved. I just needed that boost I received from the priesthood blessing and visit from Pres. Bawden. It's like the Lord was telling me He knew I was still there, still going along this pathway...
Tuesday morning we went to camp - 1 1/2 hours away. Tara's role at camp was to just enjoy the girls and do whatever she felt like. She wasn't sure how she would be used yet. She took some pretty hefty naps every day; but was eating better than she had eaten in weeks, and was feeling reasonably well. She was able to walk around the campsites back and forth without trouble. Wednesday came, and Pres. asked Tara to speak to the 4th level girls - these are girls 15 turning 16. These girls camped at a different spot that the rest of the group; so we traveled there that night. Pres. asked me to introduce Tara and "tell her story" and then Tara spoke. It was difficult for me to get through the "story" - it's really the 1st time I've told it to a group before and public speaking is NOT my forte. I shake and tremble and especially in a story like this; it's tough for me to get through. I can play the piano in church hundreds of times and rarely do I get nervous; but the minute I open my mouth I pretty much fall apart. But, somehow the Lord sustained me, and I "told the story." I said things I didn't think I had told Tara before; like what the pathologist really said the day of the report - how my daughter's life really was on the line. Tara spoke after me, and Pres. asked her to follow the Spirit and talk about whatever she felt like the girls should hear. She spoke of how important her temple wedding was to her - one thing she said was, "if the Lord took me home right after my wedding, I knew it would be okay because of my temple marriage." But, the Lord has left Tara here (as she said) and while she's here she believes she's here for a reason and that reason is to help others. I personally, hope there are billions of people she has to help because I want her on this earth for a very long time!!! She spoke of the importance of the temple, of God's love for each one of them, of temptations, of modesty, and other issues. Many tears were shed and many lives were touched. I'm sorry this is so long; but it's counting as my journal and I don't want to re-type again.
Thursday Pres. wanted Tara & I to pretty much repeat Wednesday's experience; except give it in the main lodge to all the rest of the girls. Thursday at about 3:30; someone came to steal me away from my cook's responsibilities in the kitchen. Tara was lying on the couch in the lodge unable to get up. She was unable to focus, walk, and she was "feeling weird." (which is a word she uses often). 2 nurses were around her and one bishop who is also an oncologist at Mayo Clinic. She was pretty much out of commission and I was wondering how on earth she was going to stand up and talk to all the girls that evening; but I had the thought, "if the Lord wants her to speak, there will be a way." Sure enough, about 6:00; she pops off the couch, eats a reasonable dinner, and gets her strength back. That night she stood by Pres. Bawden for about 45 minutes as they both spoke to the girls. After her talk, the girls started to line up to see Tara, and a line formed that ran outside of the lodge of girls waiting to give Tara a hug. She expressed her love for the girls and her desire to help them, they felt that love, and wanted to meet her personally. After the "line of hugs" Tara seriously SKIPPED out of the lodge. Skipped!! Coming off the couch to skipping - THAT is the power of love. My mother's heart was so happy for her. I love those moments when I see glimpses of Tara - the not sick version of Tara. That girl is something else, and girls' camp was such a tremendous experience for both Tara and the girls. I know the Lord is REAL, I know He loves us, and it helped me so much to feel that, as well as Tara. I got a little glimpse of eternity. There are people here who Tara can help with her story, so many people.... I want her to keep on reaching out and being needed so much on this earth that she won't be called back home to heaven.....can't stand the thought of her ever not being here..... that's the place in my mind I just can't go; even though my mind wanders there at times..... when it does; I have to push away the fear and remember that where faith grows, miracles blossom. Tara's afraid again today - she gets that way when she has a bad headache. I try to remind her she's been here before - and help her push away the fear also; but sometimes fear rears it's ugly head anyway. She's so sick today - those antibiotics are really taking their toll; but the good news is that WEDNESDAY she should be able to stop (at least that's what I'm hoping the dr's will say on Monday). Wednesday marks 6 weeks since surgery. I'll write more later... you still need to hear about vacation....
My last post was somewhat depressing..... I'll have to admit I was NOT at all looking forward to weeks of antibiotics again. So, I'll start with the Sunday after that post. This was the 1st Sunday in July. Let's just say we have an amazing Stake President who really does listen to the Spirit and is where the Lord wants him to be when He wants him to be there! Sunday evening President Bawden stopped by our home (about 7 pm - I'm sure he had been gone since 6 am that morning) just to visit us. He felt impressed to come by. Tara & Josh were at our home for Sunday dinner that evening. Scott, Tara & I stepped in the living room to talk with him (we knew he came to see Tara) and the first thing he said to any of us was to me and it was, "How are you doing, Becky?" "You don't seem to have your usual sparkle." Tears instantly flowed down my face. Lynette Bayles calls this face of priesthood leaders the "Bishop face". Same thing happened to her when Scott asked her how she was doing one day - and REALLY meant "how are you doing?!" Anyway, President Bawden knows what it feels like to be the one watching a loved one suffer - he's BEEN there and I know he knows. We proceeded to talk for a bit - mostly Tara talked to Pres. Bawden and her spirit was shining through (nothing unusual for Tara). She was in a much better spot that I was; she was still positive and talking about how she's learning through all of this. Now I have to preface my next comments with some info. One of my husband's responsibilities in our church is to oversee the girls' camp for the 12-18 year old girls in our stake. It's held once a year. I told him this year I would go with him and help cook or do whatever was needed of me because Nate would be gone that week to EFY (Especially for Youth - a church camp) and I might as well get out in the mountains; be of some service, and be with him since there were no "kids" to mother that week. That Wednesday I had decided not to go to girls' camp. Tara was in her "couch" mode - feeling just too sick and blue to do anything at all; and although it would make Tara really really mad for me to stay home from camp because of her; that's exactly what I was going to do anyway. I know there are so many others who would happily step in and help in any way they could; but my crazy mother's heart just can't stand the thought of Tara feeling crappy without me trying to do something if I could. Too many times there is absolutely nothing I can do but just see her be sick; but even if that's the case; I didn't want to be away from her. Is this co-dependancy? I don't know... anyway, Tara had in her secret little heart wanted to go to girls' camp also; and I had thoughts about her going and was wishing the stake leaders would ask her to go; because I knew how much she loved girls' camp and I believed that there were girls there she could touch; but girls' camp is not something you just invite yourself to and say, "hey, by the way, I feel like I should come and be with the girls and help somehow". You have to have a job, a role, a reason for going.
President Bawden, after visiting with Tara, and seeing her great spirit shine forth, said that he felt impressed to invite Tara to girls' camp. The hugest smile broke out on Tara's face and she just KNEW it. Just knew that she was supposed to go. Bear in mind that she had been feeling really yucky after the June 29 surgery. President asked her if she could make the trip; and she said yes, but she wasn't too sure about leaving Josh. So, President visited with Josh also; and Josh was his wonderful, supportive, self and encouraged Tara to take this opportunity. Tara was all smiles, and this meant that I, as well, would be going to camp. Tara & I both received priesthood blessings that evening. From that moment on, Tara's strength steadily started to improve., and my spirits improved. I just needed that boost I received from the priesthood blessing and visit from Pres. Bawden. It's like the Lord was telling me He knew I was still there, still going along this pathway...
Tuesday morning we went to camp - 1 1/2 hours away. Tara's role at camp was to just enjoy the girls and do whatever she felt like. She wasn't sure how she would be used yet. She took some pretty hefty naps every day; but was eating better than she had eaten in weeks, and was feeling reasonably well. She was able to walk around the campsites back and forth without trouble. Wednesday came, and Pres. asked Tara to speak to the 4th level girls - these are girls 15 turning 16. These girls camped at a different spot that the rest of the group; so we traveled there that night. Pres. asked me to introduce Tara and "tell her story" and then Tara spoke. It was difficult for me to get through the "story" - it's really the 1st time I've told it to a group before and public speaking is NOT my forte. I shake and tremble and especially in a story like this; it's tough for me to get through. I can play the piano in church hundreds of times and rarely do I get nervous; but the minute I open my mouth I pretty much fall apart. But, somehow the Lord sustained me, and I "told the story." I said things I didn't think I had told Tara before; like what the pathologist really said the day of the report - how my daughter's life really was on the line. Tara spoke after me, and Pres. asked her to follow the Spirit and talk about whatever she felt like the girls should hear. She spoke of how important her temple wedding was to her - one thing she said was, "if the Lord took me home right after my wedding, I knew it would be okay because of my temple marriage." But, the Lord has left Tara here (as she said) and while she's here she believes she's here for a reason and that reason is to help others. I personally, hope there are billions of people she has to help because I want her on this earth for a very long time!!! She spoke of the importance of the temple, of God's love for each one of them, of temptations, of modesty, and other issues. Many tears were shed and many lives were touched. I'm sorry this is so long; but it's counting as my journal and I don't want to re-type again.
Thursday Pres. wanted Tara & I to pretty much repeat Wednesday's experience; except give it in the main lodge to all the rest of the girls. Thursday at about 3:30; someone came to steal me away from my cook's responsibilities in the kitchen. Tara was lying on the couch in the lodge unable to get up. She was unable to focus, walk, and she was "feeling weird." (which is a word she uses often). 2 nurses were around her and one bishop who is also an oncologist at Mayo Clinic. She was pretty much out of commission and I was wondering how on earth she was going to stand up and talk to all the girls that evening; but I had the thought, "if the Lord wants her to speak, there will be a way." Sure enough, about 6:00; she pops off the couch, eats a reasonable dinner, and gets her strength back. That night she stood by Pres. Bawden for about 45 minutes as they both spoke to the girls. After her talk, the girls started to line up to see Tara, and a line formed that ran outside of the lodge of girls waiting to give Tara a hug. She expressed her love for the girls and her desire to help them, they felt that love, and wanted to meet her personally. After the "line of hugs" Tara seriously SKIPPED out of the lodge. Skipped!! Coming off the couch to skipping - THAT is the power of love. My mother's heart was so happy for her. I love those moments when I see glimpses of Tara - the not sick version of Tara. That girl is something else, and girls' camp was such a tremendous experience for both Tara and the girls. I know the Lord is REAL, I know He loves us, and it helped me so much to feel that, as well as Tara. I got a little glimpse of eternity. There are people here who Tara can help with her story, so many people.... I want her to keep on reaching out and being needed so much on this earth that she won't be called back home to heaven.....can't stand the thought of her ever not being here..... that's the place in my mind I just can't go; even though my mind wanders there at times..... when it does; I have to push away the fear and remember that where faith grows, miracles blossom. Tara's afraid again today - she gets that way when she has a bad headache. I try to remind her she's been here before - and help her push away the fear also; but sometimes fear rears it's ugly head anyway. She's so sick today - those antibiotics are really taking their toll; but the good news is that WEDNESDAY she should be able to stop (at least that's what I'm hoping the dr's will say on Monday). Wednesday marks 6 weeks since surgery. I'll write more later... you still need to hear about vacation....
Saturday, July 9, 2011
5 more weeks
Becky again...
Tara is on antibiotics again - I don't even remember which kind this time. But, we are back to the antibiotics making her sick all the time. It isn't going to be easy to get through these next weeks. Tara really does feel pretty sick when she takes them. So, she's trying to get through the forced "facelift" of the entire head being opened up again and then stretched; as well as the sick feeling from antibiotics. I saw the shipment of antibiotics at my doorstep again and just about cried right then and there. My stomach gets this sick feeling again and that medicine just about resembles poison to me. I'm sure it's even more poisonous to Tara. I just hope and pray they work; and her body will be able to return to some semblance of normal and be able to fight off her own infections after all this forced help. So, when you all pray; please pray specifically that Tara will be able to EAT, and that she will be able to endure these weeks and regain some strength at some point. No food sounds good to her - we're just happy if it doesn't BAD. She's tired of resting and not feeling good. Chemo is going to be put off again; but that's ok with me - she's so sick already she just can't handle anything else while she's fighting this infection.
We are going to Lake Powell and Tara is trying to make the best of a trip to Powell when she can't even really get in the water.... she made me promise not to cancel it and knowing Tara, she will enjoy the things she CAN do; and not mope about the things she can't. Maybe I'm the only "moper" around. She has that port accessed sticking out of her chest again, and she will also have stitches in her head as well; so no water for Tara. I guess she can wade.... and hopefully get some splashes on her while she rides a jet ski....
We're enjoying a visit from Scott's parents - they wanted to come see Tara... and Tara also loved having her friend from college days here after the surgery; so it's been good to have some diversions.
Thanks for your specific prayers; we wouldn't get through this pathway without our army praying for us! I was talking to someone today and realized how blessed we are - I needed that today because I've been negative about having to take antibiotics again. As I explained the tumor, I realized again how blessed we are that Tara has all of herself working, (even though she's weak) and the tumor didn't have fingers spreading around - she had a great surgery; which helps. So, there are always those miracles I have to remember when I feel a little picked on (or rather, I feel like Tara's picked on..) We just have to gut through this hard time...
Tara is on antibiotics again - I don't even remember which kind this time. But, we are back to the antibiotics making her sick all the time. It isn't going to be easy to get through these next weeks. Tara really does feel pretty sick when she takes them. So, she's trying to get through the forced "facelift" of the entire head being opened up again and then stretched; as well as the sick feeling from antibiotics. I saw the shipment of antibiotics at my doorstep again and just about cried right then and there. My stomach gets this sick feeling again and that medicine just about resembles poison to me. I'm sure it's even more poisonous to Tara. I just hope and pray they work; and her body will be able to return to some semblance of normal and be able to fight off her own infections after all this forced help. So, when you all pray; please pray specifically that Tara will be able to EAT, and that she will be able to endure these weeks and regain some strength at some point. No food sounds good to her - we're just happy if it doesn't BAD. She's tired of resting and not feeling good. Chemo is going to be put off again; but that's ok with me - she's so sick already she just can't handle anything else while she's fighting this infection.
We are going to Lake Powell and Tara is trying to make the best of a trip to Powell when she can't even really get in the water.... she made me promise not to cancel it and knowing Tara, she will enjoy the things she CAN do; and not mope about the things she can't. Maybe I'm the only "moper" around. She has that port accessed sticking out of her chest again, and she will also have stitches in her head as well; so no water for Tara. I guess she can wade.... and hopefully get some splashes on her while she rides a jet ski....
We're enjoying a visit from Scott's parents - they wanted to come see Tara... and Tara also loved having her friend from college days here after the surgery; so it's been good to have some diversions.
Thanks for your specific prayers; we wouldn't get through this pathway without our army praying for us! I was talking to someone today and realized how blessed we are - I needed that today because I've been negative about having to take antibiotics again. As I explained the tumor, I realized again how blessed we are that Tara has all of herself working, (even though she's weak) and the tumor didn't have fingers spreading around - she had a great surgery; which helps. So, there are always those miracles I have to remember when I feel a little picked on (or rather, I feel like Tara's picked on..) We just have to gut through this hard time...
Friday, July 1, 2011
Good news!!
Guess what?
So Tara's infection is in fact not MRSA but it is staff!! YES! And the doctor said staff responds well to anti-biotics which means... it can kill it!
aaand... don't you worry, there is more good news!
The doctor is not going to make Tara take Vancomycin!!! He said he wants to put her on something that is easier on her and doesn't make her feel as crappy.
So tonight and tomorrow morning they are going to put her on different anti-biotics and if she responds well she can come home!!! Yay.
We love good news.
And thank you for all your prayers!!!
So Tara's infection is in fact not MRSA but it is staff!! YES! And the doctor said staff responds well to anti-biotics which means... it can kill it!
aaand... don't you worry, there is more good news!
The doctor is not going to make Tara take Vancomycin!!! He said he wants to put her on something that is easier on her and doesn't make her feel as crappy.
So tonight and tomorrow morning they are going to put her on different anti-biotics and if she responds well she can come home!!! Yay.
We love good news.
And thank you for all your prayers!!!
Party in room 6N-04!!
Hello blogishpere,
Rachel here. Tara asked me to blog for her so... here I am! Lucky - you guys get to listen to me ramble. But really, we have been here in this room siiince... Oh I don't even know. A long time. The days are all jumbling together. Yesterday Ryan, Steph, Brig, and Cami came and visted her. They played Rook and kept her company. Even though Tara just had brain surgery, she and Ryan smoked Mom and Steph in a game of Rook. Skills.
Last night I got to stay with her. It was definitely my first time staying over night in a hospital room and not being the one hooked up to IV's. But, the hospital does have decent couches... so that's nice. So Tara and I watched Project Runway until about 10:30 and then she decided it was bedtime... I decided it was bedtime at like 9:00 o'clock - I was so tired... but I stayed awake with her and we had a grand ol' time eating nasty hospital food and watching Project Runway. But she seemed okay last night, she had pain and her nurse wasn't super great at giving pain meds to her. So that wasn't very nice... but tonight will be her last night in the hospital!! So, hallelujah!
Oh and here is an update of the happenings of the hospital.
Tara seems to be good, Dad is finally home so she is a happy girl! Keep the prayers! And especially pray that her infection is not MRSA!!!
Tara loves you guys...
ps, here is a close up of her head....
At least they are stiches and not staples right??!
Right.
Rachel here. Tara asked me to blog for her so... here I am! Lucky - you guys get to listen to me ramble. But really, we have been here in this room siiince... Oh I don't even know. A long time. The days are all jumbling together. Yesterday Ryan, Steph, Brig, and Cami came and visted her. They played Rook and kept her company. Even though Tara just had brain surgery, she and Ryan smoked Mom and Steph in a game of Rook. Skills.
Last night I got to stay with her. It was definitely my first time staying over night in a hospital room and not being the one hooked up to IV's. But, the hospital does have decent couches... so that's nice. So Tara and I watched Project Runway until about 10:30 and then she decided it was bedtime... I decided it was bedtime at like 9:00 o'clock - I was so tired... but I stayed awake with her and we had a grand ol' time eating nasty hospital food and watching Project Runway. But she seemed okay last night, she had pain and her nurse wasn't super great at giving pain meds to her. So that wasn't very nice... but tonight will be her last night in the hospital!! So, hallelujah!
Oh and here is an update of the happenings of the hospital.
- The plastic surgeon ended up cutting open the whole scar instead of just the little 2 inch seam that wasn't closing... That was unexpected but he said he just wanted the whole thing to close up nicely. He also shaved some of the bone to make it better...
- They found some infection in there... it may be either Staff or MRSA. We really really reallllly don't want it to be MRSA. But regardless she has to go back on Vancomycin. And that is no fun. No fun at all.
Tara seems to be good, Dad is finally home so she is a happy girl! Keep the prayers! And especially pray that her infection is not MRSA!!!
Tara loves you guys...
ps, here is a close up of her head....
At least they are stiches and not staples right??!
Right.
Wednesday, June 29, 2011
Finished
Becky here..
We are finished with brain surgery #5. Tara is now in her own room recovering. The plastic surgeon did a good job on her horseshoe on her head. He cut away the purple, scabby skin, pulled her skull free from the bone for awhile, and re-did her entire opening; not just an inch or two. It does look like it will heal this time - we will pray hard that this time her head does in fact HEAL. I was surprised to see such a large incision again - which in my mind, equals PAIN. It's hard to watch her lie on this bed again; but I know this too shall pass. She's on regular intervals on morphine right now; and I will make sure the nurse never is late on the dosage! She woke up in quite a bit of pain; but we had a good nurse in recovery that was quick to distribute the pain meds. Dr. Jo (nickname for plastic surgeon) shaved around on the bone some - said it was protruding in some places; so now it's shaved nice and clean and won't irritate the incision anymore. He also removed 2 metal plates and 4 screws, so now there's only 2 or 3 small titanium plates in her head. I think her head actually will look better now instead of worse; although she did lose some hair around the incision area; but she doesn't really care about that anymore. It's tough for her to rest well after these surgeries because she can't move her head at all without it bothering her. But, they'll keep her pretty doped up for the first 24 hours so that helps alot. My grateful list for today:
NO catheters are coming out of Tara's head
There are no signs of infection; they are culturing some samples now to double check
She still has her bone and now it's all smooth underneath her scalp
We had a very smooth ER process - smoothest ever. I prayed specifically this morning that things would go smoothly in the ER and it was an amazingly quick, smooth, relatively pleasant ER experience. We got into a nice comfy room within the hour - no moaning people next to us and our own private room where Rachel & Tara happily watched MasterChef together on the bed. No Nazi nurses to kick me and my projects out of the room, either. I feel like this was a direct "tender mercy" of the Lord, letting me know that HE knows we're here today.
That's my grateful list. It's hard to watch her in pain again... that's the worst part. We're starting to recognize nurses, residents, admitting people, etc. We're starting to put names with the residents .... one of the residents today wasn't sure he liked my nickname for him "Dr. Staple Gun" - we quickly memorized his real name instead. Another was the resident we talked into letting us out of the ER a few weeks ago so Tara & Josh wouldn't spend their anniversary in the hospital. I reminded him that Dr. Smith said it was the right decision to go home instead of lie around in the hospital waiting for an MRI when one was scheduled in 2 days anyway!! A nurse just this hour said she thought she recognized us - Tara has a very distinctive appearance - beautiful brown eyes, cute short hair, and a large horseshoe on the right side of her head. Hard to miss Tara - she sticks out in so many wonderful ways! Her pleasant personality endears her to all in the hospital. Plus, we have been here on a regular basis this year - surgeries in Feb, March, April, and June with ER rooms visits inbetween. I feel like we're going to move on now and just finish treatment and stay out of the hospital. I think Dr. Smith will likely say Tara can't have chemo in July; but we'll see. Tara will want it; crazy girl. I love her so much it hurts... we will get through this yet again. Thanks for your prayers. You are all the BEST!
We are finished with brain surgery #5. Tara is now in her own room recovering. The plastic surgeon did a good job on her horseshoe on her head. He cut away the purple, scabby skin, pulled her skull free from the bone for awhile, and re-did her entire opening; not just an inch or two. It does look like it will heal this time - we will pray hard that this time her head does in fact HEAL. I was surprised to see such a large incision again - which in my mind, equals PAIN. It's hard to watch her lie on this bed again; but I know this too shall pass. She's on regular intervals on morphine right now; and I will make sure the nurse never is late on the dosage! She woke up in quite a bit of pain; but we had a good nurse in recovery that was quick to distribute the pain meds. Dr. Jo (nickname for plastic surgeon) shaved around on the bone some - said it was protruding in some places; so now it's shaved nice and clean and won't irritate the incision anymore. He also removed 2 metal plates and 4 screws, so now there's only 2 or 3 small titanium plates in her head. I think her head actually will look better now instead of worse; although she did lose some hair around the incision area; but she doesn't really care about that anymore. It's tough for her to rest well after these surgeries because she can't move her head at all without it bothering her. But, they'll keep her pretty doped up for the first 24 hours so that helps alot. My grateful list for today:
NO catheters are coming out of Tara's head
There are no signs of infection; they are culturing some samples now to double check
She still has her bone and now it's all smooth underneath her scalp
We had a very smooth ER process - smoothest ever. I prayed specifically this morning that things would go smoothly in the ER and it was an amazingly quick, smooth, relatively pleasant ER experience. We got into a nice comfy room within the hour - no moaning people next to us and our own private room where Rachel & Tara happily watched MasterChef together on the bed. No Nazi nurses to kick me and my projects out of the room, either. I feel like this was a direct "tender mercy" of the Lord, letting me know that HE knows we're here today.
That's my grateful list. It's hard to watch her in pain again... that's the worst part. We're starting to recognize nurses, residents, admitting people, etc. We're starting to put names with the residents .... one of the residents today wasn't sure he liked my nickname for him "Dr. Staple Gun" - we quickly memorized his real name instead. Another was the resident we talked into letting us out of the ER a few weeks ago so Tara & Josh wouldn't spend their anniversary in the hospital. I reminded him that Dr. Smith said it was the right decision to go home instead of lie around in the hospital waiting for an MRI when one was scheduled in 2 days anyway!! A nurse just this hour said she thought she recognized us - Tara has a very distinctive appearance - beautiful brown eyes, cute short hair, and a large horseshoe on the right side of her head. Hard to miss Tara - she sticks out in so many wonderful ways! Her pleasant personality endears her to all in the hospital. Plus, we have been here on a regular basis this year - surgeries in Feb, March, April, and June with ER rooms visits inbetween. I feel like we're going to move on now and just finish treatment and stay out of the hospital. I think Dr. Smith will likely say Tara can't have chemo in July; but we'll see. Tara will want it; crazy girl. I love her so much it hurts... we will get through this yet again. Thanks for your prayers. You are all the BEST!
Tuesday, June 28, 2011
Here she goes again - #5
Becky here....
Unbelievable but true, Tara goes in the ER again in the morning for surgery. She just started to feel better!! AAUUUGGHH! We had our regular Tuesdsay date with Dr. Smith; he saw Tara's persistent scab on her head - it falls off, sticky stuff comes out of her head again, and it is created again, and the cycle keeps repeating itself. Dr. Smith saw a small hole again and didn't like it. He has been trying to avoid a large surgery to repair the head - usually the skin will heal and grow together; but Tara's skin has been so hammered with radiation, medicine, and surgeries, that it just can't heal in that spot like it should. So, he's calling in the plastic surgeon this time and Tara will get skin stretched somehow around her skull to cover the bad spot and get it to heal. He will also "drill" into her bone "a little" which I don't much like the sound of, either. Those words equate to my mother's mind, PAIN. On the bright side, we hope and pray this is a lasting fix to the annoying leakage of Tara's head. I also hope and pray she doesn't have to resume any of those dreaded antibiotics again. He doesn't seem to think there's infection, just skin healing issues, so that's a good thing. But, he did say, the bone is probably "irritated" so I'm not sure what that will entail. I am thinking she might have a "funky haircut" again and her hair was just starting to look so cute; but once again, positive Tara says that "hair doesn't matter."
So, as I stared across the little exam room into my daughter's beautiful, brave, brown eyes, and looked at her cute, dark brown, short hair and perfect face, I just lost it again - took my brave break. Thankfully, Dr. Smith was out calling his plastic surgeon friend. Tara let me cry in her arms and smiled at me and told me it was okay to cry. She again reassured me. She also said something pretty insightful - she said this was easier than having a child go through spiritual pain again and again... which is likely very true.
So, off we go to the ER again in the morning. I dislike being a regular there; but that's the best way for us to get surgery the day we want it. We'll try to sneak Rachel in; as well as Josh and myself - hopefully the Nazi nurse is not on duty - she's usually on at night; so we should be good to go. Scott is away on business, and this is killing him not to be here; but Tara reassured him he should stay and she'll be fine. Dr. Smith said the pain shouldn't be too bad; so I'm banking on that - I think it won't be as bad as the tubes in February, but not as good as the one in April - I think this one will rate somewhere in the middle of the spectrum on the pain scale. So, it's party in the ER tomorrow. I'll try to update you all after the procedure - I'm sure it will be fine...
As always, thanks for your love and prayers....we still need them!
Unbelievable but true, Tara goes in the ER again in the morning for surgery. She just started to feel better!! AAUUUGGHH! We had our regular Tuesdsay date with Dr. Smith; he saw Tara's persistent scab on her head - it falls off, sticky stuff comes out of her head again, and it is created again, and the cycle keeps repeating itself. Dr. Smith saw a small hole again and didn't like it. He has been trying to avoid a large surgery to repair the head - usually the skin will heal and grow together; but Tara's skin has been so hammered with radiation, medicine, and surgeries, that it just can't heal in that spot like it should. So, he's calling in the plastic surgeon this time and Tara will get skin stretched somehow around her skull to cover the bad spot and get it to heal. He will also "drill" into her bone "a little" which I don't much like the sound of, either. Those words equate to my mother's mind, PAIN. On the bright side, we hope and pray this is a lasting fix to the annoying leakage of Tara's head. I also hope and pray she doesn't have to resume any of those dreaded antibiotics again. He doesn't seem to think there's infection, just skin healing issues, so that's a good thing. But, he did say, the bone is probably "irritated" so I'm not sure what that will entail. I am thinking she might have a "funky haircut" again and her hair was just starting to look so cute; but once again, positive Tara says that "hair doesn't matter."
So, as I stared across the little exam room into my daughter's beautiful, brave, brown eyes, and looked at her cute, dark brown, short hair and perfect face, I just lost it again - took my brave break. Thankfully, Dr. Smith was out calling his plastic surgeon friend. Tara let me cry in her arms and smiled at me and told me it was okay to cry. She again reassured me. She also said something pretty insightful - she said this was easier than having a child go through spiritual pain again and again... which is likely very true.
So, off we go to the ER again in the morning. I dislike being a regular there; but that's the best way for us to get surgery the day we want it. We'll try to sneak Rachel in; as well as Josh and myself - hopefully the Nazi nurse is not on duty - she's usually on at night; so we should be good to go. Scott is away on business, and this is killing him not to be here; but Tara reassured him he should stay and she'll be fine. Dr. Smith said the pain shouldn't be too bad; so I'm banking on that - I think it won't be as bad as the tubes in February, but not as good as the one in April - I think this one will rate somewhere in the middle of the spectrum on the pain scale. So, it's party in the ER tomorrow. I'll try to update you all after the procedure - I'm sure it will be fine...
As always, thanks for your love and prayers....we still need them!
Thursday, June 23, 2011
A Day off with more to do than sit on the couch!!
Today I am not going to work! Great right?? Just wait...the greatest part about the day off is that today I am not going to sit on the couch all day!!!! I am going to kiss that silly couch goodbye and make it today without a nap. Today I feel better. Today all I want to do is run through sprinklers and dance without any pain or hesitation. I hesitate so much. I never used to be careful about getting into the car. I could slam my head and it would not matter...now everything I do is done after the thought of what it could do to my head. I want to do a cartwheel and not worry about how my head will feel after. I know that day will come. It is feeling closer every day. I am closer to the old Tara. The more I think about wanting to be the old Tara though, the more okay I am with the new Tara. Ya, the new Tara is not physically fit anymore and can't run up flights of stairs but the new Tara is okay too. I am starting to learn to love the new Tara.
Today I hope to look at a few cars with my new foster brother Jerod...I need to have a whole post about him later... and maybe play with my boy brig who is growing up way too fast. Today maybe I could make some homemade bread, brownies, cookies, etc! :) Laundry, dishes...all this seems to excite me! Anything but stay on that couch! Today I want to be normal! Today more than ever this month I feel like I can be normal. So here's to normal, to running and playing, laughing and falling, learning and tons of hugs! Today is going to be a great day!
Momma,
You can't take this away. God could not take it away from Christ. It was something he had to endure. I could not do this without you. We are going to look back at all we have learned from this and hopefully learn to be grateful. I can't take the heartache it causes you away either. All we can continue to do is continue to help bear one anothers burdens. I can stop being such a stubborn piece of work but sometimes it makes me smile to see how worked up you get about silly things...wrong I know but I giggle inside. I just have to tease you...part of me being the best daughter I can be. I love you moms...I always will. I don't mind the pain so don't feel bad. I don't mind it as long as I have you, josh, my family, friends, and supporters there to help me. I can do anything with God and love. It hurts less because of love. You can't take this away but I can promise you that you are helping in immeasurable ways. I love life. I love love. I love you. I love.
Tara
Today I hope to look at a few cars with my new foster brother Jerod...I need to have a whole post about him later... and maybe play with my boy brig who is growing up way too fast. Today maybe I could make some homemade bread, brownies, cookies, etc! :) Laundry, dishes...all this seems to excite me! Anything but stay on that couch! Today I want to be normal! Today more than ever this month I feel like I can be normal. So here's to normal, to running and playing, laughing and falling, learning and tons of hugs! Today is going to be a great day!
Momma,
You can't take this away. God could not take it away from Christ. It was something he had to endure. I could not do this without you. We are going to look back at all we have learned from this and hopefully learn to be grateful. I can't take the heartache it causes you away either. All we can continue to do is continue to help bear one anothers burdens. I can stop being such a stubborn piece of work but sometimes it makes me smile to see how worked up you get about silly things...wrong I know but I giggle inside. I just have to tease you...part of me being the best daughter I can be. I love you moms...I always will. I don't mind the pain so don't feel bad. I don't mind it as long as I have you, josh, my family, friends, and supporters there to help me. I can do anything with God and love. It hurts less because of love. You can't take this away but I can promise you that you are helping in immeasurable ways. I love life. I love love. I love you. I love.
Tara
Friday, June 17, 2011
Why can't it be me?
Becky here...
Today I had a brave break, meltdown or whatever we want to call it. As I saw my daughter so sick from chemo I just thought "life isn't fair." Here I am, playing walleyball, cleaning, shopping, with enough energy to do whatever I want; and Tara is so tired and so sick to her stomach. I had one of those "life isn't fair" moments. I really don't usually complain, and I know there are lots of trials out there that are really tough; but today; I just wanted it to go away and have my daughter back - the one before chemo. Tara reminded me I STILL have my daughter and she once again lifted me up and put a smile back on my face. I haven't heard her complain; only me. So, I thought to myself, "why is it me that feels so good while Tara feels so bad?" I would switch if I could; I would take it away if I could; but I can't do either. It's moments like these that I really have to pray hard and lean on the Saviour just a little more heavily. I just can't understand the whys; so I'll just have to keep plugging on the "faith train" (as a friend calls it). I'm glad I feel good; don't get me wrong; but I would trade if I could have Tara feel good and me be sick.
I have to remind myself, only 4 more rounds of chemo - 4 more months - that's less months than is on one hand!!! Tara said "6 more months" - but me and Dr. Shapiro and Josh probably will VETO that idea. I am so very glad Tara has Josh - as she said on our camping trip, "Josh is my happiness."
Today I had a brave break, meltdown or whatever we want to call it. As I saw my daughter so sick from chemo I just thought "life isn't fair." Here I am, playing walleyball, cleaning, shopping, with enough energy to do whatever I want; and Tara is so tired and so sick to her stomach. I had one of those "life isn't fair" moments. I really don't usually complain, and I know there are lots of trials out there that are really tough; but today; I just wanted it to go away and have my daughter back - the one before chemo. Tara reminded me I STILL have my daughter and she once again lifted me up and put a smile back on my face. I haven't heard her complain; only me. So, I thought to myself, "why is it me that feels so good while Tara feels so bad?" I would switch if I could; I would take it away if I could; but I can't do either. It's moments like these that I really have to pray hard and lean on the Saviour just a little more heavily. I just can't understand the whys; so I'll just have to keep plugging on the "faith train" (as a friend calls it). I'm glad I feel good; don't get me wrong; but I would trade if I could have Tara feel good and me be sick.
I have to remind myself, only 4 more rounds of chemo - 4 more months - that's less months than is on one hand!!! Tara said "6 more months" - but me and Dr. Shapiro and Josh probably will VETO that idea. I am so very glad Tara has Josh - as she said on our camping trip, "Josh is my happiness."
Tuesday, June 14, 2011
ER Room #6
It's pretty sad when I have to stop and think REALLY hard to figure out how many times we've been in the ER in the past 12 months... I think it's 6! I never thought I would be one of those people who have the ER "figured out" - a "regular." Pathetic! We were the family who had stale doctor's records that were so many years old that the doctors would not have recognized us had we not been family friends with them.
5:30 Saturday evening Tara calls in a panic( i was most definently not in a panic I was just trying to let you know we were leaving and had to speak louder than your happy anniversary song) because she's "seizing again" so we headed straight to the ER room - because now we know what to do. She had a seizure last November and I was REALLY looking forward to this November because it would've been Tara's one year mark without a seizure so then possibly she could get OFF the anti-seizure meds (The doctors never told her this...this was just dreaming...I know I will be on them for a long while), but oh well... anyway, Tara took 5 dilantin pills when the seizure started; which was probably good. Her arm was freaking out again; but her leg and her face also went numb somewhat. This lasted about 45 minutes, on and off, and then she (thankfully) completely recovered all her functions after that. But, because she HAD a seizure; she was pumped full of anti seizure meds in the ER room; which left her drunk and dizzy feeling until today. I had to talk pretty hard to get the Dr. Smith's resident to NOT admit her to the hospital - he had already decided to admit her to "watch her" and get an MRI; but after explaining it was her anniversary the next day AND she was already scheduled for an MRI + 3 doctors all on Tuesday; AND I reassured him we are seeing Dr. Smith almost on a weekly basis; he let us go home; saying he didn't want to ruin our weekend. Thank heavens! Josh was very awesome and planned a fun weekend for their one year anniversary; and thankfully did most of their celebrating on Friday and Saturday before the seizure. Tara even felt good on Friday and Saturday; which was a blessing. She had been so tired and plagued with headaches the week before that. Anyway, we were in and out of the ER in less than 7 hours which HAS to be a record for us! Tara walked in the ER faking (not faking...just dramatizing...I was in fact seizing) her arm shaking (so we could get seen faster) and then it REALLY started having a seizure again, so no faking was needed. We got a CT scan pretty quickly; and then finally finished the whole process by midnight. I spotted the Nazi Nurse again, and hid from her so we could all get in the ER room together. We had a "nice nurse" - a 20 something male nurse. We complimented him on how nice he was; and how great it was we could all be in the room together - how could he kick us out after that? So, Josh, Scott, Tara, and myself had our Saturday night date in the ER.
Sunday Tara was determined to go to church because Josh was speaking in church. She couldn't walk in or out of the meeting without assistance; so everyone was very worried about her. So - to all of you worried people, keep praying, but really, Tara was just "drunk" from all the meds. It was a heroic effort for her to get to church.
So, on to the GOOD NEWS. Today was MRI day, and we saw 3 doctors who all independently saw the MRI and all told us that it was a good scan - NO CHANGE. Nice, nice words! They didn't think there was fluid to worry about that the resident mentioned in the ER room. Just goes to show the residents really don't know as much as the docs. Dr. Shapiro explained why the resident thought there was fluid, but showed us why it wasn't a big deal. Tara decided (they all agree with me!!! Shapiro says I am cute every time we go in there) she was the "favorite patient" of all 3 doctors, ha! She and Dr. Smith are becoming a weekly date... he actually said we could wait 2 weeks to see him this time.. it was awesome to meet with Dr. Brachman again. He is the best at explaining things and really taking time to help. He addressed Tara's tiredness issues and we have some ideas to help with that.( He told me to drink a Coke... mom did not like that answer!!!) He said she really shouldn't get as much sleep as she's getting and we need to address that; so that was good to hear that from him.
We really don't know why Tara was having headaches last week - could be residual Temodar, could be healing and stretching from the healing of her head, or she could be just having headaches like a normal person. Heaven only knows. She starts Temodar tonight (chemo) so this could be a tired, rough week; but it brings us one round closer to finishing. Finish date is OCTOBER 4th. That is the date of the last round of Temodar; but of course, Tara, crazy woman (I am completely sane and just want to increase the likelyhood of an increased life expectancy!), wants more chemo - she wants to keep going til Christmas; so Dr. Shapiro will decide. I am taking the faith approach and I'm assuming that tumor is GONE (Josh says so too) and she should just finish chemo and move on with her life...but sometimes Tara gets scared. I try to tell myself that I'm not scared; and the majority of the time I am not. I felt very peaceful today during the MRI - I felt peaceful after my prayers this morning when I specifically prayed for peace...we are so blessed and the Lord is with us, I know that, He carries us when we can't carry ourselves. I hate to see my daughter drugged up and not herself; but I am happy the MRI was clean and we will move forward and things will be better tomorrow. She may actually make it to work tomorrow - we'll see! She is a trooper and was still smiling in the ER room Saturday and wasn't mad, sad, discouraged, or depressed, at least that I could see.( I got free graham crackers...how could I not be and they were the Honey Maid kind...not the gross Walmart brand)
5:30 Saturday evening Tara calls in a panic( i was most definently not in a panic I was just trying to let you know we were leaving and had to speak louder than your happy anniversary song) because she's "seizing again" so we headed straight to the ER room - because now we know what to do. She had a seizure last November and I was REALLY looking forward to this November because it would've been Tara's one year mark without a seizure so then possibly she could get OFF the anti-seizure meds (The doctors never told her this...this was just dreaming...I know I will be on them for a long while), but oh well... anyway, Tara took 5 dilantin pills when the seizure started; which was probably good. Her arm was freaking out again; but her leg and her face also went numb somewhat. This lasted about 45 minutes, on and off, and then she (thankfully) completely recovered all her functions after that. But, because she HAD a seizure; she was pumped full of anti seizure meds in the ER room; which left her drunk and dizzy feeling until today. I had to talk pretty hard to get the Dr. Smith's resident to NOT admit her to the hospital - he had already decided to admit her to "watch her" and get an MRI; but after explaining it was her anniversary the next day AND she was already scheduled for an MRI + 3 doctors all on Tuesday; AND I reassured him we are seeing Dr. Smith almost on a weekly basis; he let us go home; saying he didn't want to ruin our weekend. Thank heavens! Josh was very awesome and planned a fun weekend for their one year anniversary; and thankfully did most of their celebrating on Friday and Saturday before the seizure. Tara even felt good on Friday and Saturday; which was a blessing. She had been so tired and plagued with headaches the week before that. Anyway, we were in and out of the ER in less than 7 hours which HAS to be a record for us! Tara walked in the ER faking (not faking...just dramatizing...I was in fact seizing) her arm shaking (so we could get seen faster) and then it REALLY started having a seizure again, so no faking was needed. We got a CT scan pretty quickly; and then finally finished the whole process by midnight. I spotted the Nazi Nurse again, and hid from her so we could all get in the ER room together. We had a "nice nurse" - a 20 something male nurse. We complimented him on how nice he was; and how great it was we could all be in the room together - how could he kick us out after that? So, Josh, Scott, Tara, and myself had our Saturday night date in the ER.
Sunday Tara was determined to go to church because Josh was speaking in church. She couldn't walk in or out of the meeting without assistance; so everyone was very worried about her. So - to all of you worried people, keep praying, but really, Tara was just "drunk" from all the meds. It was a heroic effort for her to get to church.
So, on to the GOOD NEWS. Today was MRI day, and we saw 3 doctors who all independently saw the MRI and all told us that it was a good scan - NO CHANGE. Nice, nice words! They didn't think there was fluid to worry about that the resident mentioned in the ER room. Just goes to show the residents really don't know as much as the docs. Dr. Shapiro explained why the resident thought there was fluid, but showed us why it wasn't a big deal. Tara decided (they all agree with me!!! Shapiro says I am cute every time we go in there) she was the "favorite patient" of all 3 doctors, ha! She and Dr. Smith are becoming a weekly date... he actually said we could wait 2 weeks to see him this time.. it was awesome to meet with Dr. Brachman again. He is the best at explaining things and really taking time to help. He addressed Tara's tiredness issues and we have some ideas to help with that.( He told me to drink a Coke... mom did not like that answer!!!) He said she really shouldn't get as much sleep as she's getting and we need to address that; so that was good to hear that from him.
We really don't know why Tara was having headaches last week - could be residual Temodar, could be healing and stretching from the healing of her head, or she could be just having headaches like a normal person. Heaven only knows. She starts Temodar tonight (chemo) so this could be a tired, rough week; but it brings us one round closer to finishing. Finish date is OCTOBER 4th. That is the date of the last round of Temodar; but of course, Tara, crazy woman (I am completely sane and just want to increase the likelyhood of an increased life expectancy!), wants more chemo - she wants to keep going til Christmas; so Dr. Shapiro will decide. I am taking the faith approach and I'm assuming that tumor is GONE (Josh says so too) and she should just finish chemo and move on with her life...but sometimes Tara gets scared. I try to tell myself that I'm not scared; and the majority of the time I am not. I felt very peaceful today during the MRI - I felt peaceful after my prayers this morning when I specifically prayed for peace...we are so blessed and the Lord is with us, I know that, He carries us when we can't carry ourselves. I hate to see my daughter drugged up and not herself; but I am happy the MRI was clean and we will move forward and things will be better tomorrow. She may actually make it to work tomorrow - we'll see! She is a trooper and was still smiling in the ER room Saturday and wasn't mad, sad, discouraged, or depressed, at least that I could see.( I got free graham crackers...how could I not be and they were the Honey Maid kind...not the gross Walmart brand)
Tuesday, June 7, 2011
waiting in the office
We have never had to really wait for the doctor but today we have been sitting here for an hour. I decided to see if I could blog on a phone. Man, I miss my keyboard. My thoughts just fly so much faster than my fingers and my poor phone has no chance of keeping up with me and my crazy mind. Headaches keep happening but mom thinks it is because I don't eat enough...hopefully she is right! They keep calling names - every other doctor but Smith... That means Smith is stuck with someone... I just want to get this over with... I am nervous for my MRI because if my headaches and nerves are doing this because... Surprise surprise... My head has a hole in it and it is leaking... Ahhhh I am so ready for my head to just heal!!!
It is sad to see all the people in here. There are way too many people who need to see a nuero surgeon... Some have spine issues and wear neck braces while others have scars that match mine... I feel for them. Hopefully their heads can heal. Little kids are not supposed to be in here... They just look so innocent. Ah it kills me to see them in here. Men with patches over their eyes. I don't really like this office...
Well I made it out alive and with decent news and now I am waiting to go into my favorite place...the infusion center!!! Where there is free food, comfy chairs, and happy people. It does not smell like hospital food and they never deliver bad news here! I am here so they can flush my port and take some blood. This way I can avoid home health nurses!!!
So Smith said that things were not looking too bad but he had hoped I would have healed more. I don't have any stitches anymore...only took a month and a half to get them out!!!! I will get to see him again next week along with Shapiro, the MRI machine and Brachtman. ..Who, Terri agrees, looks like Wilson off house...looks like it will be a long day next week. Smith said that tumors do not cause headaches until they get huge and I just had an MRI in April so he is not too worried...music to my ears. Looks like no surgeries for me!! Lets see if we can go two months in a row!! Life is great!!! It is so much easier to breathe knowing that my headaches are not because of the tumor coming back. Well, nurse is here!!
Tara B.
It is sad to see all the people in here. There are way too many people who need to see a nuero surgeon... Some have spine issues and wear neck braces while others have scars that match mine... I feel for them. Hopefully their heads can heal. Little kids are not supposed to be in here... They just look so innocent. Ah it kills me to see them in here. Men with patches over their eyes. I don't really like this office...
Well I made it out alive and with decent news and now I am waiting to go into my favorite place...the infusion center!!! Where there is free food, comfy chairs, and happy people. It does not smell like hospital food and they never deliver bad news here! I am here so they can flush my port and take some blood. This way I can avoid home health nurses!!!
So Smith said that things were not looking too bad but he had hoped I would have healed more. I don't have any stitches anymore...only took a month and a half to get them out!!!! I will get to see him again next week along with Shapiro, the MRI machine and Brachtman. ..Who, Terri agrees, looks like Wilson off house...looks like it will be a long day next week. Smith said that tumors do not cause headaches until they get huge and I just had an MRI in April so he is not too worried...music to my ears. Looks like no surgeries for me!! Lets see if we can go two months in a row!! Life is great!!! It is so much easier to breathe knowing that my headaches are not because of the tumor coming back. Well, nurse is here!!
Tara B.
Monday, June 6, 2011
I am more than cancer
Well I have not written in a while. Things have been fairly uneventful which is a good thing in the cancer world. I am still healing from the surgery in April. My scabs keep coming and then falling off and then new ones appear. Don’t know if this is good or bad…we will find out tomorrow. I still have some stiches in from the April surgery and I am convinced that I hold a record for longest time with non-disposable stiches in head. It has been a month and a half or something ridiculous like that! I am unbelievably tired most of the time but I am still able to do important things like shopping and such! My body size keeps changing like crazy so I never get pants or shorts but it is still fun to look! Last summer I froze every day…not so much this summer. I have actually sweated already! Big thing for me. Being cold in Arizona during the summer has serious advantages but when you are shivering outside in an Arizona summer…you start to get really really odd looks. No shivering thus far. I don’t know when chemo will be again but I do know that I will never have to take it with those evil antibiotics again. Many of you may know of Stephanie Neilson. If not, you really should get to know her story. She is incredibly inspiring. She was in a near fatal plane crash and burned 80% of her body. I will attach her blog site so you can visit it if you would like. She has been on Oprah and has a very popular blog. She lives in Utah but has been recognized by Arizona newspapers as well. Yesterday I watched part of her movie and she said something that really hit me. She said, "I am Stephanie and I am not my body”. She may not look the same and be able to do the same things she was able to before but she still knows who she is. I feel like sometimes Cancer has become who I am. Sometimes I feel like it is my life. Yesterday she helped me remember that just because my body has cancer, doesn’t mean I do. I am so much more than the young girl who has cancer. My body has cancer…or should I say HAD!!! (positive thinking) I am Tara and cancer cannot define me.
http://nieniedialogues.blogspot.com/
http://nieniedialogues.blogspot.com/
Wednesday, June 1, 2011
She's off antibiotics!
Happy days!
Thursday was Tara's last dose of antibiotics! Now her stomach can attempt to return to something resembling normal, I hope. She has lost a few more pounds; and I'd like to see some of that weight return to her. So very many foods just don't sound good to her anymore. Many times we have to just give up on eating healthy and just find something that will go down! Last week it was Little Caesar's pizza - twice! Go figure. Yucky Little Caesar's hit her spot... she's off Mexican, Thai, and back to bland basics; except for that pizza. Travis has been home for 3 weeks, and one day his "assignment" was to take Tara some lunch and get her to eat. So, he brought Little Caesar's; and it meant so much to Tara just that he would come over to her house and "have lunch". He also accompanied us to a doctor day; so that was great also.
We escaped last weekend to the mountains near Payson for a 2 1/2 day camping trip. We had decided not to go; but all Tara has to do is flash her smile and her beautiful brown eyes at her Dad, and off we go camping. Scott had a few hours on Friday to prepare for camping, and couldn't resist Tara. Anything to make his daughter smile. So, all 10 of us hung out in the mountains, did pretty much nothing strenuous, played lots of ROOK, ate lots of Dutch Oven cooking (Tara actually had 2 bowls of dutch oven stew!!!)and tried to enjoy sleeping in tents. We went to a small branch of our church that Sunday; and that was a neat experience also. It was just great to have all of us together for a few days without any distractions from technology!
Tara has actually worked 2 days in a row! That has to be a record - she hasn't done that since February 13th, so I'm thinking that's a good sign. She does still need naps during the day at work - but that's to be expected! Her head did leak AGAIN on Friday; but I'm hoping it's just because the scab finally broke off and therein resulted in some leakage. We weren't too thrilled to see that again. We are so looking forward to going to Lake Powell on July 22nd, and Tara needs to be able to GET IN THE WATER. Hopefully 6 weeks is enough time to heal. Whoever thought it would take 4 months for this infection to heal??? Crazy. We just never know what is around the corner. We just keep living a day at a time. I am hoping Tara will start to feel good enough to do the healthy eating again, and get some supplements down her that will help build her body up again. Chemo starts June 14th again, provided all is well. I don't even know anymore how many rounds of chemo she has left. My guess is she'll finish around November.
We made it through all the painful memories of last year, May 14th, May 28th, the pathology report day, now the good memories are coming - the wedding on June 12th. The fairytale reception all our friends put on for Tara & Josh.
Hopefully Tara will be back to blogging again herself soon - - I think sometimes she just gets sick of thinking about her "cancer" and wants to be normal and forget about it all and doesn't blog.
Thank you all for your continued support! Love you all!
Becky
PS - It's time for me to wrap up the quilt raffle - so if you want some tickets; please email me in the next 2 days.... and I can put you down for some tickets. beckyschlappi@cox.net or you can send me a message on facebook.
Thursday was Tara's last dose of antibiotics! Now her stomach can attempt to return to something resembling normal, I hope. She has lost a few more pounds; and I'd like to see some of that weight return to her. So very many foods just don't sound good to her anymore. Many times we have to just give up on eating healthy and just find something that will go down! Last week it was Little Caesar's pizza - twice! Go figure. Yucky Little Caesar's hit her spot... she's off Mexican, Thai, and back to bland basics; except for that pizza. Travis has been home for 3 weeks, and one day his "assignment" was to take Tara some lunch and get her to eat. So, he brought Little Caesar's; and it meant so much to Tara just that he would come over to her house and "have lunch". He also accompanied us to a doctor day; so that was great also.
We escaped last weekend to the mountains near Payson for a 2 1/2 day camping trip. We had decided not to go; but all Tara has to do is flash her smile and her beautiful brown eyes at her Dad, and off we go camping. Scott had a few hours on Friday to prepare for camping, and couldn't resist Tara. Anything to make his daughter smile. So, all 10 of us hung out in the mountains, did pretty much nothing strenuous, played lots of ROOK, ate lots of Dutch Oven cooking (Tara actually had 2 bowls of dutch oven stew!!!)and tried to enjoy sleeping in tents. We went to a small branch of our church that Sunday; and that was a neat experience also. It was just great to have all of us together for a few days without any distractions from technology!
Tara has actually worked 2 days in a row! That has to be a record - she hasn't done that since February 13th, so I'm thinking that's a good sign. She does still need naps during the day at work - but that's to be expected! Her head did leak AGAIN on Friday; but I'm hoping it's just because the scab finally broke off and therein resulted in some leakage. We weren't too thrilled to see that again. We are so looking forward to going to Lake Powell on July 22nd, and Tara needs to be able to GET IN THE WATER. Hopefully 6 weeks is enough time to heal. Whoever thought it would take 4 months for this infection to heal??? Crazy. We just never know what is around the corner. We just keep living a day at a time. I am hoping Tara will start to feel good enough to do the healthy eating again, and get some supplements down her that will help build her body up again. Chemo starts June 14th again, provided all is well. I don't even know anymore how many rounds of chemo she has left. My guess is she'll finish around November.
We made it through all the painful memories of last year, May 14th, May 28th, the pathology report day, now the good memories are coming - the wedding on June 12th. The fairytale reception all our friends put on for Tara & Josh.
Hopefully Tara will be back to blogging again herself soon - - I think sometimes she just gets sick of thinking about her "cancer" and wants to be normal and forget about it all and doesn't blog.
Thank you all for your continued support! Love you all!
Becky
PS - It's time for me to wrap up the quilt raffle - so if you want some tickets; please email me in the next 2 days.... and I can put you down for some tickets. beckyschlappi@cox.net or you can send me a message on facebook.
Tuesday, May 24, 2011
Procrastination
I have been sitting here for about 15 minutes trying to put off taking my medicine. CLINDAMYCIN= evil drug that I despise. I take it three times a day and I get rather sick three times a day. I am supposed to take it at 2 today and it is 2:20...think I am doing a pretty good job at this procrastination! :) Last week I took my temodar and the evil drug and a few times thought I was going to die. I still look like a zombie sometimes when I walk and woke up with a panic attach the other night at about 3:40 AM. I hate hate hate this drug but can't seem to tell the doctors this. I go to the office and pretend I am superwoman again. Oh, it is not too bad I say. They think I can do anything!:) I don't tell them all the way how I feel because I want the medicine. I want this stuff because the sicker it makes me, the healthier it makes me. I have completed one more round of chemo and have more than half the rounds done! I just do not like this stuff and I am going to sit here and complain all I want to! Just counted...7 more pills to take! That is 2 more today and 3 tomorrow which leaves me with... only half a day the next day! Okay, enough complaining.
Really as an update on me.
I have lost a bit more weight due to taste issues and obviously have had a few issues with my meds. I think my rash is finally going away along with the bruises I gave myself from itching so much. Everything looks like it is going to be uphill.
My hair continues to thicken and grow in length! Dr. Smith took out two more stitches today and I think I have two left! It has been a month since my last surgery and May is looking like it could be a surgery free month!!!
Jan.= ER with breathing problems
Feb. 15 = surgery #2
March 25 = surgery #3
April 25 = surgery #4
May 24= SURGERY FREE!!!
I hope to continue this trend. I really hope the only other surgery I ever have to have is to take this port out of my chest. 6 sounds like a good total number to me.
Okay it is about 2:32 and I really need to take that little bugger...wish me luck
Really as an update on me.
I have lost a bit more weight due to taste issues and obviously have had a few issues with my meds. I think my rash is finally going away along with the bruises I gave myself from itching so much. Everything looks like it is going to be uphill.
My hair continues to thicken and grow in length! Dr. Smith took out two more stitches today and I think I have two left! It has been a month since my last surgery and May is looking like it could be a surgery free month!!!
Jan.= ER with breathing problems
Feb. 15 = surgery #2
March 25 = surgery #3
April 25 = surgery #4
May 24= SURGERY FREE!!!
I hope to continue this trend. I really hope the only other surgery I ever have to have is to take this port out of my chest. 6 sounds like a good total number to me.
Okay it is about 2:32 and I really need to take that little bugger...wish me luck
Monday, May 16, 2011
One Year Later
One year ago I had no idea...
What glioblastoma is...now I know there is a cool nickname for it too!!! GBM
What radiation is
That not all chemotherapies killed your hair
What acid reflex is
How fast word gets around a loving community
What sugar/white flour does to your body
That I could be this tired
How many years brain surgeons go to school
How quickly my life could change
How grateful I am for the gospel and the essential role it plays in my life
The fastest way to drop ten pounds is have brain surgery
Flying in planes may seem crazy right after a surgery but it happens all the time
Nurses have 12 hour shifts
Having a seizure gets you right into the ER while a hole in your head the size of your index finger gets you an hour wait.
How long my hair was
How much Josh loved me
I actually looked okay in hats/bald/balding/every other odd state my hair has been and currently is in.
Dr. Shapiro takes time to warm up to you
What “brain games” are
It is possible to be freezing cold in the middle of an AZ summer
What a port is and how amazing they are
That I had that much blood in me
Where Sonora Quests were all over the valley
My body could possibly itch this much
I am allergic to keppra and another random antibiotic
If you rub your big toe...it helps with your headaches
You can’t take Advil while on chemo
What a medical “trial” is
Your hair growing and fingernails is a sign that your body is doing okay
How wonderful the words “no growth” sound
How badly I want future children
How many times we would move
I would marry my Joshua
How amazing my Father in Heaven is
Okay I really could go on and on but I am getting bored so let me just say that I have practically been through nursing school because I ask the nurses so many questions and may have possibly completed a whole semester of residency if you count all the hours I have spent with doctors. I know all the good eating places by St. Joes and could maybe get there with my eyes closed. I have had more tender mercies of the Lord and have felt him near more this year than any other year of my life. I know that my Heavenly Father Loves me and will never leave my comfortless. I have been blessed endlessly and I am so grateful for everything.
I may not have been able to go to school for the past year but I have learned more I think in this year of experience than I could have ever learned in two semesters of school.
Most people live an average of 12 months with a GBM. AVERAGE!!!! People....I am just over 12 months and I am thinking that I am not average! There is no way this silly little tumor thing is going to get in the way of my life.
Everyday I think about what I did the year before...in just a few days I will have surgery and then we will have the results that seriously shook us all. I will try not to dwell on it too much and have it consume my life and every thought but it is hard. Kicking cancers trash has become part of who I am...
I am a daughter of God who is kicking cancers trash!!!
What glioblastoma is...now I know there is a cool nickname for it too!!! GBM
What radiation is
That not all chemotherapies killed your hair
What acid reflex is
How fast word gets around a loving community
What sugar/white flour does to your body
That I could be this tired
How many years brain surgeons go to school
How quickly my life could change
How grateful I am for the gospel and the essential role it plays in my life
The fastest way to drop ten pounds is have brain surgery
Flying in planes may seem crazy right after a surgery but it happens all the time
Nurses have 12 hour shifts
Having a seizure gets you right into the ER while a hole in your head the size of your index finger gets you an hour wait.
How long my hair was
How much Josh loved me
I actually looked okay in hats/bald/balding/every other odd state my hair has been and currently is in.
Dr. Shapiro takes time to warm up to you
What “brain games” are
It is possible to be freezing cold in the middle of an AZ summer
What a port is and how amazing they are
That I had that much blood in me
Where Sonora Quests were all over the valley
My body could possibly itch this much
I am allergic to keppra and another random antibiotic
If you rub your big toe...it helps with your headaches
You can’t take Advil while on chemo
What a medical “trial” is
Your hair growing and fingernails is a sign that your body is doing okay
How wonderful the words “no growth” sound
How badly I want future children
How many times we would move
I would marry my Joshua
How amazing my Father in Heaven is
Okay I really could go on and on but I am getting bored so let me just say that I have practically been through nursing school because I ask the nurses so many questions and may have possibly completed a whole semester of residency if you count all the hours I have spent with doctors. I know all the good eating places by St. Joes and could maybe get there with my eyes closed. I have had more tender mercies of the Lord and have felt him near more this year than any other year of my life. I know that my Heavenly Father Loves me and will never leave my comfortless. I have been blessed endlessly and I am so grateful for everything.
I may not have been able to go to school for the past year but I have learned more I think in this year of experience than I could have ever learned in two semesters of school.
Most people live an average of 12 months with a GBM. AVERAGE!!!! People....I am just over 12 months and I am thinking that I am not average! There is no way this silly little tumor thing is going to get in the way of my life.
Everyday I think about what I did the year before...in just a few days I will have surgery and then we will have the results that seriously shook us all. I will try not to dwell on it too much and have it consume my life and every thought but it is hard. Kicking cancers trash has become part of who I am...
I am a daughter of God who is kicking cancers trash!!!
Sunday, May 15, 2011
One year later....
I haven't been able to get this off my mind all week - yesterday was one year ago that we started this brain tumor pathway. One year ago yesterday, Tara and I stood in EVDI, shaking and crying together as we learned of the tumor. Trying so hard to be brave as I heard the news from Dr. Shockey, but giving up, and hugging Tara and just crying with her. We were both so scared.
I have lived through things I never thought I could live through.... things like the pathology report, the initial CT scan, shaving Tara's head, and family members breaking down at different times (including myself!)
I have learned I can't write the script on life, I have to live by Tara's motto "come what may and love it." (although she does a better job of that than I do)
I have learned it's really okay to cry, it's okay to lean on others and let them help. Some days I had to get through hour by hour...
I have witnessed Tara's amazing courage and positive attitude as she faces this. Rarely do I see her break down.
I have memories of the fairy tale wedding reception (thanks to friends & ward family) and memories of Tara being in white in the temple, special moments the 2 of us had together before the wedding itself. The wedding got Tara through some very tough times..... it was a huge wonderful event to look forward to!
I have loved watching Tara & Josh be so happy and in love.
I have loved spending time with Tara - even though I would prefer not to have Tara have a brain tumor; I enjoy all the moments we have in the car driving back and forth to Barrows. We've had some pretty good talks about so many different things. Tara has become a friend, not just a daughter. It's been a wonderful transformation. Sometimes we run around together acting just like 2 married women doing our errands together. We've had plenty of times together when Tara doesn't feel good; but we've also had many times that are happy, also -
I have loved all the people who have helped us through this trial. So very many people who have prayed and prayed and loved us through this. I've said this before, but you have carried us on your shoulders.I feel the Lord's love through people.I also feel it in the temple, which has become one of my lifelines.
I remember Scott endlessly taking on the job of Tara and her care the first month - getting us into the right hands - making all those calls I don't know if I could have made - Scott & I took turns crying and breaking down - but we rarely both broke down at the same time, so we could help each other through our tough moments.
I remember family rallying around - family near and far - so many thoughtful cards and gifts, letters and emails from family and friends both....
I have learned to treasure the moments. I really do treasure the moments. I have learned that it is possible to survive seemingly unsurvivable moments. There are some moments I don't treasure; but I try to reflect on the pleasant moments. I have grown from the hard moments. Would I choose to grow this way? Definitely NOT. I think what gets me through each day is HOPE. Hope that tomorrow will be better, right now it's hope that Tara's side effects won't be permanent and she will be better at some point. My hope turns to prayer...I do keep trying whatever I can to help her (when she'll let me help her, that is). We have a plaque in our front hall that says, "where hope grows, miracles blossom." That came from someone last year at about this time...
I think of people who don't even know Tara doing incredibly nice things for her, a homemade afghan, quilt, pretty earrings in the mail, just to name a few. I can't even begin to mention the kind acts done in Tara's behalf from all the people who DO know her! She was completely and totally spoiled at her wedding and bridal shower. Such generousity I have not witnessed before! Generousity in gifts, not only presents, but gifts of time also. Gifts of prayer - I really do feel the power of combined prayers. Prayers help me remember that Tara is NOT a statistic - she is Tara - and miracles can and will happen - and have happened!
In 2011, Tara should finish treatment - we'll find out this week when Tara starts again. Finishing treatment means Tara can start feeling better again. I have my perpetual hope that her feet will stop burning, her stomach will stop hurting, and she won't have permanent side effects from these medicines being poured into her body. She has started to get some of her energy back these 2 months she's been off of chemo. I can see that someday when she's finished; she could return to a "normal" life again.... except I don't think we'll ever return to the normal we were before the brain tumor.
Now for the newsy update...
Tara is officially "off" the clinical trial. She didn't have an infusion within 8 weeks, so they can't monitor her anymore. I'm okay with it, but Tara & Scott are struggling. I have that "hope" I referred to before that keeps springing up. Maybe I have some "blind faith" but I believe if Tara HAD to have that drug, she would get it. If her tumor recurs (we all pray that never happens) she'll still get the medicine for free at that point - so the clinical trial was not in vain - and it may have helped these past months as well.
We see Dr. Shapiro Tuesday, as well as Dr. Smith. Stitches will finally be removed, and then one more week of antibiotics then Tara can get OFF OF THEM. 3 + months is too long to be on those heavy duty drugs in my humble opinion (or not so humble). The doctors will decide when chemo starts again. Tara says she's ready to start again; but I'm not so sure - her stomach bugs her so much and I hate to have another thing bugging her stomach. Tara really wants the chemo - she wants something in her body fighting the tumor. I think it's like a security blanket with her. I want it only because the sooner we have it, the sooner Tara finishes treatment. My guess is treatment will now finish in November. This surgeon that we weren't supposed to get to know - he was just "assigned" to the case, we are getting to know pretty well.... he is actually very wonderful and really wants to take good care of Tara. I am trying to do whatever homeopathic things Tara will let me try to combat the toxins in her body.... Tara did say yesterday that "she's ready to be a brain cancer patient again" It's been a year and she's ready to eat healthy and fight the fight some more. Tara will never be "normal" - no matter what happens, she's heads and tails above "normal". She is our hero and Josh's queen!
I have lived through things I never thought I could live through.... things like the pathology report, the initial CT scan, shaving Tara's head, and family members breaking down at different times (including myself!)
I have learned I can't write the script on life, I have to live by Tara's motto "come what may and love it." (although she does a better job of that than I do)
I have learned it's really okay to cry, it's okay to lean on others and let them help. Some days I had to get through hour by hour...
I have witnessed Tara's amazing courage and positive attitude as she faces this. Rarely do I see her break down.
I have memories of the fairy tale wedding reception (thanks to friends & ward family) and memories of Tara being in white in the temple, special moments the 2 of us had together before the wedding itself. The wedding got Tara through some very tough times..... it was a huge wonderful event to look forward to!
I have loved watching Tara & Josh be so happy and in love.
I have loved spending time with Tara - even though I would prefer not to have Tara have a brain tumor; I enjoy all the moments we have in the car driving back and forth to Barrows. We've had some pretty good talks about so many different things. Tara has become a friend, not just a daughter. It's been a wonderful transformation. Sometimes we run around together acting just like 2 married women doing our errands together. We've had plenty of times together when Tara doesn't feel good; but we've also had many times that are happy, also -
I have loved all the people who have helped us through this trial. So very many people who have prayed and prayed and loved us through this. I've said this before, but you have carried us on your shoulders.I feel the Lord's love through people.I also feel it in the temple, which has become one of my lifelines.
I remember Scott endlessly taking on the job of Tara and her care the first month - getting us into the right hands - making all those calls I don't know if I could have made - Scott & I took turns crying and breaking down - but we rarely both broke down at the same time, so we could help each other through our tough moments.
I remember family rallying around - family near and far - so many thoughtful cards and gifts, letters and emails from family and friends both....
I have learned to treasure the moments. I really do treasure the moments. I have learned that it is possible to survive seemingly unsurvivable moments. There are some moments I don't treasure; but I try to reflect on the pleasant moments. I have grown from the hard moments. Would I choose to grow this way? Definitely NOT. I think what gets me through each day is HOPE. Hope that tomorrow will be better, right now it's hope that Tara's side effects won't be permanent and she will be better at some point. My hope turns to prayer...I do keep trying whatever I can to help her (when she'll let me help her, that is). We have a plaque in our front hall that says, "where hope grows, miracles blossom." That came from someone last year at about this time...
I think of people who don't even know Tara doing incredibly nice things for her, a homemade afghan, quilt, pretty earrings in the mail, just to name a few. I can't even begin to mention the kind acts done in Tara's behalf from all the people who DO know her! She was completely and totally spoiled at her wedding and bridal shower. Such generousity I have not witnessed before! Generousity in gifts, not only presents, but gifts of time also. Gifts of prayer - I really do feel the power of combined prayers. Prayers help me remember that Tara is NOT a statistic - she is Tara - and miracles can and will happen - and have happened!
In 2011, Tara should finish treatment - we'll find out this week when Tara starts again. Finishing treatment means Tara can start feeling better again. I have my perpetual hope that her feet will stop burning, her stomach will stop hurting, and she won't have permanent side effects from these medicines being poured into her body. She has started to get some of her energy back these 2 months she's been off of chemo. I can see that someday when she's finished; she could return to a "normal" life again.... except I don't think we'll ever return to the normal we were before the brain tumor.
Now for the newsy update...
Tara is officially "off" the clinical trial. She didn't have an infusion within 8 weeks, so they can't monitor her anymore. I'm okay with it, but Tara & Scott are struggling. I have that "hope" I referred to before that keeps springing up. Maybe I have some "blind faith" but I believe if Tara HAD to have that drug, she would get it. If her tumor recurs (we all pray that never happens) she'll still get the medicine for free at that point - so the clinical trial was not in vain - and it may have helped these past months as well.
We see Dr. Shapiro Tuesday, as well as Dr. Smith. Stitches will finally be removed, and then one more week of antibiotics then Tara can get OFF OF THEM. 3 + months is too long to be on those heavy duty drugs in my humble opinion (or not so humble). The doctors will decide when chemo starts again. Tara says she's ready to start again; but I'm not so sure - her stomach bugs her so much and I hate to have another thing bugging her stomach. Tara really wants the chemo - she wants something in her body fighting the tumor. I think it's like a security blanket with her. I want it only because the sooner we have it, the sooner Tara finishes treatment. My guess is treatment will now finish in November. This surgeon that we weren't supposed to get to know - he was just "assigned" to the case, we are getting to know pretty well.... he is actually very wonderful and really wants to take good care of Tara. I am trying to do whatever homeopathic things Tara will let me try to combat the toxins in her body.... Tara did say yesterday that "she's ready to be a brain cancer patient again" It's been a year and she's ready to eat healthy and fight the fight some more. Tara will never be "normal" - no matter what happens, she's heads and tails above "normal". She is our hero and Josh's queen!
Thursday, May 12, 2011
Finally Blogging Again...Port happiness/Laguna/17 layer cake/other randomness that has come to me while writing
** I just added pictures...well I did not add them but I am stealing them from Chol and the link is at the very bottom. I guess people like pictures...don't blame them...we are georgeous! :) Just kidding.
Okay yes I have been bad…very bad…at writing on the blog. I am sorry. As a recap… surgery went well and these blessed blue stiches are itching more than ever which I guess is a good sign of healing. I still have my stiches and get them out next Tuesday. I have not been picking at my scab or stiches which may not seem like a big deal but it is for me. I am a major picker and for me to keep my hands off has been huge. I think one reason I have been able to keep my hands off my head is because they have had free range to itch my back, legs, arms, neck and stomach. Last week I developed a wonderful rash. I now have a new med that I am allergic to!!! My antibiotics. I have kept my hands off my head but have apparently itched so much and so hard that I have kept Josh awake all night have now have wonderful blue bruises on my legs from bruising…. At least my head is healing! So I have a new oral antibiotic that I will take three times a day for 14 days. Ahh!!!! There is an end. The doctor is only making me do these to make sure it is gone. My cultures came back really well and showed “no growth” but they want to double make sure so I have nice light blue pills to keep me company wherever I go. Anything is better than that ball I had to carry around with me! The best part about yesterday is that I got the needle out of my chest!!!!! MY PORT IS OFFICALLY DEACTIVATED!!!!!!!! I still have my port…it was surgically placed and will have to be surgically removed but I do not have that friendly 1.5 inch needle in my chest! I am a free woman! I have not really showered since…well…FEBRURARY 15!!! That is a really really long time. I cannot even describe how happy I am to take a shower tonight. I am supposed to wait 24 hours from when I am de-accesed…that will be at about 3:00 TODAY! I don’t have a cord hanging out of my shirt or getting stuck in my clothes. I will not have to stick a rubber band around my neck and then clip it to the port to take a shower (half choking). I will not have a funny sticker with a date stuck to my chest for people to wonder about and I will not have to accidentally run into something and then pay for it the next few hours. The doctors said there was no way I could hurt the port…they obviously don’t know me very well! So that is the best news of the week!
Girl’s trip to Laguna was AMAZING and so relaxing. I could not go in the water but I still managed to have a great time and get a little sun. I have just decided to give up on the whole being tan thing. I am just going to be happy with me.
The trip was a little hard at times because I had to realize that I am not normal. I tried to be normal so hard. I ate sugary foods and I stayed up late. I laughed and even tried to run/ dance in the parking lot. That obviously was not a good decision and now I have some weird pain in my port. I think I stretched an artery or something important like that! I even tried to turn down medicine. I wanted to be like everyone else and not have to take 18,000 pills every day! That didn’t work so well with Dr. Mom and we had to have a nice little heart to heart about the situation. We decided that she has no idea how I feel and I have no idea how she feels. I am just glad that I have a crazy mother who loves me enough to try everything to save my life. She pesters the doctors with questions and reassurance and is willing to try just about anything to help me. Unfortunately, I am a “bad patient” as she calls me and am not so compliant with her meds as opposed to my oncologist or surgeon.
Anyway, back to the trip and the amazing part of it. Mom gave us a portion of money to go shopping with thinking that with that money we would get a complete outfit! Mom…I got like…12! Leave it to the Schlappi’s to have $100 and come out with a pair of gap pants, 9 shirts, 1 jacket, a pack of socks, and four zippers! Now that is a bargain! How I did it??? I still don’t know…the fashion district of LA helped… 1 shirt, 1 jacket, and four zippers cost me 6 dollars there! Okay, enough bragging! :)
I meet with a homeopathic oncologist tomorrow and another doctor but I can’t remember which one…I just know I have two. Anyway, we will see what he has to say about that whole thing. I am doing as wonderful as possible I think. I look at other cancered patients and consider myself extremely lucky. The Lord will never leave me alone.
As an update on my feet. They still burn and sting and all those other wonderful things. At times the heels of my feet get really hot and now my fingertips feel like they have needles in them sometimes. Definitely not fun but hopefully not permanent. I am giving my poor feet “foot baths” and Dr. Mom has other remedies she is trying on them…when I let her. :)
SATURDAY IS MAY 14
Ahh that day will always be remembered. My mom says it has gone by so slow…I completely disagree…a whole year has passed! What if they had told me I only had a year??!!! You crazy lady! I am loving every bit of my itchy life and hope it continues on and on!
“through faith, this cancer may be rebuked” – Elder Cook
Faith meds first…then Dr. Meds.
Take that silly glioblastoma.
Also, if you want pictures of California and our 16 or 17 layered cake Chol blogged about them and I have attached the link. I think her first two recent ones are about them...the cake is actually pretty funny and Nate Dawg's volleyball game is thrown in a little as well.
enjoy...Chol is hilarious
http://rachelschlappi.blogspot.com/
Okay yes I have been bad…very bad…at writing on the blog. I am sorry. As a recap… surgery went well and these blessed blue stiches are itching more than ever which I guess is a good sign of healing. I still have my stiches and get them out next Tuesday. I have not been picking at my scab or stiches which may not seem like a big deal but it is for me. I am a major picker and for me to keep my hands off has been huge. I think one reason I have been able to keep my hands off my head is because they have had free range to itch my back, legs, arms, neck and stomach. Last week I developed a wonderful rash. I now have a new med that I am allergic to!!! My antibiotics. I have kept my hands off my head but have apparently itched so much and so hard that I have kept Josh awake all night have now have wonderful blue bruises on my legs from bruising…. At least my head is healing! So I have a new oral antibiotic that I will take three times a day for 14 days. Ahh!!!! There is an end. The doctor is only making me do these to make sure it is gone. My cultures came back really well and showed “no growth” but they want to double make sure so I have nice light blue pills to keep me company wherever I go. Anything is better than that ball I had to carry around with me! The best part about yesterday is that I got the needle out of my chest!!!!! MY PORT IS OFFICALLY DEACTIVATED!!!!!!!! I still have my port…it was surgically placed and will have to be surgically removed but I do not have that friendly 1.5 inch needle in my chest! I am a free woman! I have not really showered since…well…FEBRURARY 15!!! That is a really really long time. I cannot even describe how happy I am to take a shower tonight. I am supposed to wait 24 hours from when I am de-accesed…that will be at about 3:00 TODAY! I don’t have a cord hanging out of my shirt or getting stuck in my clothes. I will not have to stick a rubber band around my neck and then clip it to the port to take a shower (half choking). I will not have a funny sticker with a date stuck to my chest for people to wonder about and I will not have to accidentally run into something and then pay for it the next few hours. The doctors said there was no way I could hurt the port…they obviously don’t know me very well! So that is the best news of the week!
Girl’s trip to Laguna was AMAZING and so relaxing. I could not go in the water but I still managed to have a great time and get a little sun. I have just decided to give up on the whole being tan thing. I am just going to be happy with me.
The trip was a little hard at times because I had to realize that I am not normal. I tried to be normal so hard. I ate sugary foods and I stayed up late. I laughed and even tried to run/ dance in the parking lot. That obviously was not a good decision and now I have some weird pain in my port. I think I stretched an artery or something important like that! I even tried to turn down medicine. I wanted to be like everyone else and not have to take 18,000 pills every day! That didn’t work so well with Dr. Mom and we had to have a nice little heart to heart about the situation. We decided that she has no idea how I feel and I have no idea how she feels. I am just glad that I have a crazy mother who loves me enough to try everything to save my life. She pesters the doctors with questions and reassurance and is willing to try just about anything to help me. Unfortunately, I am a “bad patient” as she calls me and am not so compliant with her meds as opposed to my oncologist or surgeon.
Anyway, back to the trip and the amazing part of it. Mom gave us a portion of money to go shopping with thinking that with that money we would get a complete outfit! Mom…I got like…12! Leave it to the Schlappi’s to have $100 and come out with a pair of gap pants, 9 shirts, 1 jacket, a pack of socks, and four zippers! Now that is a bargain! How I did it??? I still don’t know…the fashion district of LA helped… 1 shirt, 1 jacket, and four zippers cost me 6 dollars there! Okay, enough bragging! :)
I meet with a homeopathic oncologist tomorrow and another doctor but I can’t remember which one…I just know I have two. Anyway, we will see what he has to say about that whole thing. I am doing as wonderful as possible I think. I look at other cancered patients and consider myself extremely lucky. The Lord will never leave me alone.
As an update on my feet. They still burn and sting and all those other wonderful things. At times the heels of my feet get really hot and now my fingertips feel like they have needles in them sometimes. Definitely not fun but hopefully not permanent. I am giving my poor feet “foot baths” and Dr. Mom has other remedies she is trying on them…when I let her. :)
SATURDAY IS MAY 14
Ahh that day will always be remembered. My mom says it has gone by so slow…I completely disagree…a whole year has passed! What if they had told me I only had a year??!!! You crazy lady! I am loving every bit of my itchy life and hope it continues on and on!
“through faith, this cancer may be rebuked” – Elder Cook
Faith meds first…then Dr. Meds.
Take that silly glioblastoma.
Also, if you want pictures of California and our 16 or 17 layered cake Chol blogged about them and I have attached the link. I think her first two recent ones are about them...the cake is actually pretty funny and Nate Dawg's volleyball game is thrown in a little as well.
enjoy...Chol is hilarious
http://rachelschlappi.blogspot.com/
Monday, April 25, 2011
Surgery number 4!
Hey all, Rachel here! I just got back to the 85205 on Saturday night and I could not be happier. Mesa Arizona has got to have the best weather on earth this time of year. But mostly this place has got the best people around. I am so excited to have a 4 month break from school, work, and party with my family all day every day. It's gonna be great!
But here is the update I know you all really want:
She just went under and is on her way into surgery now! We got to the ER at 6:30 this morning and she got taken away around 3:10... So we are all a little tired. But it has been quite a day! It's my first time being here in surgery with Tara. The 3 previous I have been in a completely different state. Her first big surgery I had to graduate from High School so the family went to San Fran without me. And then the last 2 I was stuck up in a place called Provo, Utah at the BYU. So I have been disappointed that I have been missing out on all the fun. If you can call it that... But I love being here for her. The hospital definitely isn't my most favorite place, but the nurses and everyone are so nice. My mom says the nurses are sometimes Nazi's but I don't believe her... I must be Tara's good luck charm :)
Of course Tara was all smiles and has had the greatest attitude all day. I do feel a little bad because I have been eating granola bars and goldfish in front of her while she has to starve before surgery.
They moved Tara to the old Pediatric room to give her more privacy. It was definitely better than sharing a room in the ER with some lady who was moaning in pain the whole time. It was so sad... I hate hearing people suffer. But in the pediatric room it was so bright and so happy!! There were giraffes on the walls and actual light. Me and T loved it.
We got cozy on the bed and watched a lot of Food Network... It doesn't take a lot to keep us happy!!
But now Dad, Mom, Josh, and I are sitting in the waiting room just... waiting. The doctors seem to all think that there is no infection because the wound isn't red and there isn't really a lot of puss coming out, but the hole in her head has gotten really big. It has grown from the size of a pencil tip, to where you could probably fit your pinky finger inside her head. You can see the skull too if you look closely. There are picture on my mom's camera, but sadly she forgot it.
Anyway, I really just want her head to heal. Thats all! Is that too much for a girl to ask? All I want is my sister back. And not at the hospital all the time. Then we can really party this summer :)
Well, thanks for all the prayers everyone. I know we all feel them and appreciate them greatly. Especially Tara. So thanks for everything you do.
She is not alone. She has the greatest family, and friends looking out and prayer for her. But most importantly she has her savior Jesus Christ who loves her and is here for her always.
Much Love,
Rachel Schlappi
Update number 2: She is out! Dr. Smith didn't see any infection on the bone. Yes! So he sealed up the wound pretty tight and scraped off any remaining infection he saw in the cracks of the titanium plates or something... But he said the infection is looking good. He said probably 3 more weeks of Vancomycin (the infection drug) and then she can finally start Chemo again. A downside is she will probably be taken off her Avaston trial which is supposed to stop a tumor from coming back, but then again she might have the placebo... So yeah. Surgery number 4 has come to a close. We aren't too happy about the fact that she can't start Chemo again very soon, but at least the bone isn't infected!!
But here is the update I know you all really want:
She just went under and is on her way into surgery now! We got to the ER at 6:30 this morning and she got taken away around 3:10... So we are all a little tired. But it has been quite a day! It's my first time being here in surgery with Tara. The 3 previous I have been in a completely different state. Her first big surgery I had to graduate from High School so the family went to San Fran without me. And then the last 2 I was stuck up in a place called Provo, Utah at the BYU. So I have been disappointed that I have been missing out on all the fun. If you can call it that... But I love being here for her. The hospital definitely isn't my most favorite place, but the nurses and everyone are so nice. My mom says the nurses are sometimes Nazi's but I don't believe her... I must be Tara's good luck charm :)
Of course Tara was all smiles and has had the greatest attitude all day. I do feel a little bad because I have been eating granola bars and goldfish in front of her while she has to starve before surgery.
They moved Tara to the old Pediatric room to give her more privacy. It was definitely better than sharing a room in the ER with some lady who was moaning in pain the whole time. It was so sad... I hate hearing people suffer. But in the pediatric room it was so bright and so happy!! There were giraffes on the walls and actual light. Me and T loved it.
We got cozy on the bed and watched a lot of Food Network... It doesn't take a lot to keep us happy!!
But now Dad, Mom, Josh, and I are sitting in the waiting room just... waiting. The doctors seem to all think that there is no infection because the wound isn't red and there isn't really a lot of puss coming out, but the hole in her head has gotten really big. It has grown from the size of a pencil tip, to where you could probably fit your pinky finger inside her head. You can see the skull too if you look closely. There are picture on my mom's camera, but sadly she forgot it.
Anyway, I really just want her head to heal. Thats all! Is that too much for a girl to ask? All I want is my sister back. And not at the hospital all the time. Then we can really party this summer :)
Well, thanks for all the prayers everyone. I know we all feel them and appreciate them greatly. Especially Tara. So thanks for everything you do.
She is not alone. She has the greatest family, and friends looking out and prayer for her. But most importantly she has her savior Jesus Christ who loves her and is here for her always.
Much Love,
Rachel Schlappi
Update number 2: She is out! Dr. Smith didn't see any infection on the bone. Yes! So he sealed up the wound pretty tight and scraped off any remaining infection he saw in the cracks of the titanium plates or something... But he said the infection is looking good. He said probably 3 more weeks of Vancomycin (the infection drug) and then she can finally start Chemo again. A downside is she will probably be taken off her Avaston trial which is supposed to stop a tumor from coming back, but then again she might have the placebo... So yeah. Surgery number 4 has come to a close. We aren't too happy about the fact that she can't start Chemo again very soon, but at least the bone isn't infected!!
Wednesday, April 20, 2011
Quilt Raffle; not Auction
After some consulting with various friends, I think it's best to "raffle" this quilt instead of "auction" it. I will sell tickets in increments of $5. You can buy as many as you would like. I tried several times to create a "button" on the blog which would donate easily through PayPal; but was unsuccessful! So, I know this is harder; but you can send a check or cash to me and I will put tickets in the raffle for you. I think this will be the best way to raise the most funds for brain cancer research. If you have a PayPal account; you can also send the funds easily to my email address beckyschlappi@cox.net via your email address. Just log in to your PayPal account, then click "send money" and they will show you how to do it. I promise not to embezzle any funds, and I am donating the cost of the fabric and the quilting myself and not getting reimbursed. Every single penny will go to the AOS Foundation to further brain cancer research. Believe me, we need more treatments available to fight this glioblastoma!!! You can also drop $ off to me here anytime - I will create a box in my entryway. I will end the raffle on June 1st - so that gives you plenty of time to spread the word. I will try to post better pictures soon - the previous pictures just don't do justice to the quilt!
Thanks for all your kind emails, prayers, and love being sent our way. I have faith when Dr. Smith goes in on Monday; he will not have to remove the bone and Tara's body will be able to heal itself.... with all these prayers going in her behalf, it just HAS to happen! I must admit I had to fight back tears in his office again. I can't cry when Tara is watching; and she continues to buoy me up with her positive attitude. She's the one going through this pain again, why is it so hard for me to accept? She seems to accept it just fine... We just have to manage the pain better this time around. We won't leave the hospital within hours of the surgery; we'll make sure pain meds get down Tara and STAY DOWN before leaving! I brought up the fact that I'm planning a trip with my daughters May 3 for 3 1/2 precious days and "please can you plan around that?" Dr. Smith reassured me he would not get in the way of our girl's trip! So, one week after surgery; we plan to leave town. I hope Tara gets her strength back quickly!!
Love you all! Happy ticket buying!
Becky
Thanks for all your kind emails, prayers, and love being sent our way. I have faith when Dr. Smith goes in on Monday; he will not have to remove the bone and Tara's body will be able to heal itself.... with all these prayers going in her behalf, it just HAS to happen! I must admit I had to fight back tears in his office again. I can't cry when Tara is watching; and she continues to buoy me up with her positive attitude. She's the one going through this pain again, why is it so hard for me to accept? She seems to accept it just fine... We just have to manage the pain better this time around. We won't leave the hospital within hours of the surgery; we'll make sure pain meds get down Tara and STAY DOWN before leaving! I brought up the fact that I'm planning a trip with my daughters May 3 for 3 1/2 precious days and "please can you plan around that?" Dr. Smith reassured me he would not get in the way of our girl's trip! So, one week after surgery; we plan to leave town. I hope Tara gets her strength back quickly!!
Love you all! Happy ticket buying!
Becky
Tuesday, April 19, 2011
I guess three is not my lucky number...maybe four???
Dear Doctor Smith,
Thank you for being a great surgeon but please for once can I go into your office without a) taking stitches out or b) telling me I need another surgery which will then lead me back to your office for suture removal? Can’t we just have a friendly...”wow Tara , your head is really looking great! Infection/cancer is completely gone and you can go back to normal now!!! Well done!”? Oh that would just be sweet music to my ears.
Yes I am going in for yet another surgery. I think this makes our total 4 thus far...yep four in under a year! May 28 was the first surgery and I was hoping to make it there without another invasion but life is still not fair and I still don’t get everything I want...someday!
Why am I having surgery?? My head just will not heal...mostly because my past medications have just about killed my body’s ability to heal. My body just isn’t as healthy as it once was. The first surgery was easy because I was med free but each one gets a little harder. The doc is going to re culture the infection to see if it has changed at all. He said it could be at the tip of the bone and if it is that would mean at least two more major surgeries. Right now we are begging for your specific prayers again. We need to pray that my body will heal and that the infection will leave. If it does not get better than I cannot have my chemotherapy and I really need to continue that treatment. The doctor plans on tighter stitches that will stay in longer. Unfortunately, I have to continue my vanc! This stuff is really nasty and is starting to have effects on more than just my stomach...my poor feet have become the next victim. We are trying to stop this possible foot damage stuff and are taking foot baths and all that fun stuff...homeopathic route.
Anyway, I guess the bottom line is I am having surgery again on Monday and we really need your prayers. My body can’t handle this much longer.
Thanks much,
Monday, April 18, 2011
Quilt Auction
This is Becky. As many of you may already know, in the last 5 or 6 years I have taken up the hobby of quilting with some of my friends. I enjoy this hobby quite a bit! All my children have a quilt on their bed, and one for their wedding. I have 2 or 3 quilts to rotate on my bed (depending on the season) and the ONLY other people who have received quilts other than my children are BLOOD relatives - such as a mother, or mother-in-law, and possibly a few table runners for sisters. I am one of those quilters who only gives a quilt away if I can "visit" it - at one of my children's homes or mothers. When I put so much time into a project such as a quilt, I like to see it and remember how much I love it! I am not much of a humanitarian quilter - I'm a pretty selfish quilter, and most of my quilts aren't "quick quilts" - they are time consuming and more involved; so I keep them! I have never considered selling a quilt because it just wouldn't be worth it - it costs quite a bit to buy the fabric and take it to my friend, Marae, who quilts the quilt together on her big machine in her living room. Soooo, all this rambling is bringing me to my point - never before have I "sold" or given away a quilt to a non relative (except for Jamie Campbell who got a quilt because she doubled the food for Tara's wedding and didn't double the price!), BUT I am going to donate a quilt to a foundation that I have a particular interest in and sell it to the highest bidder. That's where you all come in. I will post a picture of this quilt and you can email me if you are interested in purchasing it and donating the $ to the following foundation:
Many of you have read about Terri Thomas. She is Tara's "quarterback" as we affectionately call her. She can be reached anytime of the day or night by text, and has facilitated much of Tara's timely doctor care. She is the one who can call the surgeon and get a response within the hour so Tara can go to Sea World, she's the one who sends us to the ER on a semi-regular basis - she tells us if it's serious enough to go to the ER or not. She manages our doctor appointments, MRI's, treatments, etc. She accompanies us to almost every doctor appointment and coordinates Tara's care. Much to our chagrin, we found out the foundation she works for is seriously underfunded. We mistakenly thought she was paid by a rich drug company. Alas, that is not the case. She is the one who signed Tara up for the clinical trial (which, remember, would cost us $20K per infusion if we weren't on the trial) and manages all of it. If there are new clinical trials out there for brain cancer; Terri would be the 1st to know about it. So, here's the official "blurb" from the brochure about this fund raiser for this foundation:
The AOS (Arizona Oncology Services) Foundation Mission Statement is to more effectively combat cancer and improve the quality of life of cancer patients in the State of Arizona, by providing access to vital clinical research and education. Foundation for Cancer Research and Education dba AOS Foundation is a not-for-profit organization that provides access to cancer clinical trials throughout the Phoenix area with an emphasis on the National Cancer Institute trials.
Since it's inception in 1989, the AOS Foundation has provided support for cancer patients and their families (I have cried with Terri many times, I know they provide support!). AZ Oncology Services Foundation is one of the leading enrollers in radiation oncology research in the United States for the past 10 years.
Okay, so here's 2 ways to donate to this foundation if you are interested: You can just send me the $ and I promise to not embezzle any of it and give it directly to Terri before the benefit golf tournament they are having on April 30th. (or you can donate anytime after that also, and I will make sure it gets to the right person) OR here's a website: www.justgive.org go to that website then search for AOS using the following: Foundation for Cancer Research and Education, Arizona.
Here's the picture of the quilt - the dimensions are 56 x 84.
It's really hard to see how very cute this quilt is - you can't see the cute black and white polka dot fabric that is used, or the texture of the other fabrics. Just trust me, it's really neat! If you want to see it, I have it at my home. It's called "Black & White & Stars all over".
Please email me at beckyschlappi@cox.net if you are interested in being the owner of this quilt! I will end the auction on April 29th at 6:00 pm. If there is enough interest, I am considering doing a quilt of someone's choice for the foundation also. We would have to work out the price depending on the quilt and fabrics chosen.... Love you all!!!
PS - Tara's head leaked again on Saturday night. Please keep praying that the infection will be healed. I am pretty sick of the vancomyacin and so is Tara. I am about to the point to throw all the medications out the window, get Tara on good homeopathic vitamins, minerals, and supplements, and help her body heal itself. This strong antibiotic doesn't seem to be working. It's only hurting her stomach! Apparently there is a shortage of "good blood vessels" up there on her poor radiated head! Healing is taking a very long time. We see Dr. Smith Tuesday and he makes the decision to start chemo again or not to start again. I am guessing he will say "no chemo". We're already 2 months behind; but the infection HAS to be gone before chemo starts again. Wednesday is MRI - but I'm not scared because Dr. Smith just reassured us there in no tumor - but we will be curious to see if there is alot of fluid in there..... anyway, your specific prayers about this infection are appreciated!!! LOVE YOU ALL!!
Many of you have read about Terri Thomas. She is Tara's "quarterback" as we affectionately call her. She can be reached anytime of the day or night by text, and has facilitated much of Tara's timely doctor care. She is the one who can call the surgeon and get a response within the hour so Tara can go to Sea World, she's the one who sends us to the ER on a semi-regular basis - she tells us if it's serious enough to go to the ER or not. She manages our doctor appointments, MRI's, treatments, etc. She accompanies us to almost every doctor appointment and coordinates Tara's care. Much to our chagrin, we found out the foundation she works for is seriously underfunded. We mistakenly thought she was paid by a rich drug company. Alas, that is not the case. She is the one who signed Tara up for the clinical trial (which, remember, would cost us $20K per infusion if we weren't on the trial) and manages all of it. If there are new clinical trials out there for brain cancer; Terri would be the 1st to know about it. So, here's the official "blurb" from the brochure about this fund raiser for this foundation:
The AOS (Arizona Oncology Services) Foundation Mission Statement is to more effectively combat cancer and improve the quality of life of cancer patients in the State of Arizona, by providing access to vital clinical research and education. Foundation for Cancer Research and Education dba AOS Foundation is a not-for-profit organization that provides access to cancer clinical trials throughout the Phoenix area with an emphasis on the National Cancer Institute trials.
Since it's inception in 1989, the AOS Foundation has provided support for cancer patients and their families (I have cried with Terri many times, I know they provide support!). AZ Oncology Services Foundation is one of the leading enrollers in radiation oncology research in the United States for the past 10 years.
Okay, so here's 2 ways to donate to this foundation if you are interested: You can just send me the $ and I promise to not embezzle any of it and give it directly to Terri before the benefit golf tournament they are having on April 30th. (or you can donate anytime after that also, and I will make sure it gets to the right person) OR here's a website: www.justgive.org go to that website then search for AOS using the following: Foundation for Cancer Research and Education, Arizona.
Here's the picture of the quilt - the dimensions are 56 x 84.
It's really hard to see how very cute this quilt is - you can't see the cute black and white polka dot fabric that is used, or the texture of the other fabrics. Just trust me, it's really neat! If you want to see it, I have it at my home. It's called "Black & White & Stars all over".
Please email me at beckyschlappi@cox.net if you are interested in being the owner of this quilt! I will end the auction on April 29th at 6:00 pm. If there is enough interest, I am considering doing a quilt of someone's choice for the foundation also. We would have to work out the price depending on the quilt and fabrics chosen.... Love you all!!!
PS - Tara's head leaked again on Saturday night. Please keep praying that the infection will be healed. I am pretty sick of the vancomyacin and so is Tara. I am about to the point to throw all the medications out the window, get Tara on good homeopathic vitamins, minerals, and supplements, and help her body heal itself. This strong antibiotic doesn't seem to be working. It's only hurting her stomach! Apparently there is a shortage of "good blood vessels" up there on her poor radiated head! Healing is taking a very long time. We see Dr. Smith Tuesday and he makes the decision to start chemo again or not to start again. I am guessing he will say "no chemo". We're already 2 months behind; but the infection HAS to be gone before chemo starts again. Wednesday is MRI - but I'm not scared because Dr. Smith just reassured us there in no tumor - but we will be curious to see if there is alot of fluid in there..... anyway, your specific prayers about this infection are appreciated!!! LOVE YOU ALL!!
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