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....
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