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!!

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

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,

Tara

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!!

Moving/ Spring Cleaning

So my mom was not exaggerating when she said I had YEARS of things to go through. I had about 4 hours max to pack before my wedding and most of that was heavily medicated and hormonal so I was not very productive. It really did end up being a “throw everything in a box or bag” moment. We moved around so many times the first two months that we were married that I never had time to really…unpack! I unpacked what I needed and left the rest. The Gulbrandsen’s had plenty of room. So yesterday I guess I unpacked completely. I and went through everything I had…most of it not needed and that’s why it was still not unpacked. I think I could win an award for being the biggest pack rat…okay maybe not. I watched Hording…Buried Alive on TLC and I think it is what completely freaked me out. After watching that I ran up the stairs and started throwing things away! I am the t shirt queen and I decided that I really don’t need 80! I really only need a few! I kept maybe more than a few but hopefully less than 12…that’s a much better number. I got on a role and got rid of half my hoodies…all of which were pretty much given to me. I absolutely love hand me downs (infact my entire outfit today is comprised of them) but have a problem not keeping them all! I have only bought one hoodie and it was years ago (doesn’t fit) but when I first looked at it I thought I had to keep it because I remember how excited I was to get it. I spent my hard-earned money on that thing! I just about kept it until I remembered that I have about 100 pictures of me in it because I wore it about every day. After thinking back on the crazy hording show…I decided that the hoodie could keep another much smaller girl warm for a while. I did not need that hoodie. I seriously filled that back of my mom’s truck! Old dresses I never wore…shoes from DI that I never wore… jewelry that my mom gave me when I was 12…oh this one is good. So when I was about 12 or 13 my mom gave me a box with some of her old jewelry that was cool when she was 12 or 13…needless to say…I still have the box and the piano-shaped lip gloss and the Hawaiian necklace and the beaded pin necklace she made as well. There were ugly earing things and another very interesting necklace thingy…I don’t even know what to call it. The point is…none of this stuff meant anything to me. I asked my mom if she wanted it or if it meant anything to her and she threw it in the trash!!!!!!!! Ohhhhhh how could she??? I thought those things were like..really special or something. She then told me that they were really cool when she was 12 and she thought I would want them when I was 12. I am 21 now and have been carrying them around with me thinking that the empty lip gloss was special and it was trash. Pretty much most of the stuff I have been hauling around is trash. The good thing is…it has found its proper home now…IN THE TRASH CAN OR GOODWILL PILE!!! Ah it feels so good and I really don’t miss a single thing I gave away. I think some people put what I did into the “spring cleaning” category. I needed to “spring clean” like 10 years ago!



The best part of it all was that I found my orthotics for my feet…saved us $350 and my lamby…now that is something that has sentimental meaning and needs to be kept FOREVER!!!  It is probably sad to see how happy I was to see that little lamb.

I think I am addicted to this moving/cleaning/giving stuff to goodwill thing. It consumes my thoughts! I just think of how clean and neat my closet will look when I am done! Ohhhh happy days!



Chol gets home in a few short days! This summer is going to be a party! Assuming I keep my little self out of the hospital! :)



Life is oh so good right now.

Tara Lynn

Is this a glimpse of the future?

Yesterday Tara and I had an absolutely wonderful day.  Why was it wonderful?? Tara acted and felt like her "old self" - the one I used to know more than a year ago before all this started.  She acted and felt like her old self until about 4:00 at Nate's game when her feet started hurting like crazy; and then I remembered yet again that this is the daughter who has suffered through so much medication this year.  Her body has been through so much!

Many of you have been wondering how I am doing - you are so kind for your concern.... here's how I am.... the 2 months (almost) that Tara was recovering from her 2 surgeries were..... moments or hours of great times when Tara had energy, and other moments where she just had to rest and recover and get through the pain.  So, throughout those times starting the 2nd week of February until last week when Tara finally returned to work, I loved having my daughter around so much, but she wasn't really herself.  She just didn't feel good, so I guess that's why she wasn't at work!  Anyway, yesterday Tara didn't go to work; but it wasn't because she didn't feel good - which is the usual reason - it was because she needed to MOVE and organize. So, in response to your query, I am doing ok - but it's been stressful since February I have to admit; although I keep reminding myself when I get blue that there was NO TUMOR in her head in February, which lifts my spirits.

Last year when she got married she didn't have time to "go through her stuff" before moving in with Josh - so she ended up with years of accumulation from her bedroom that never got sorted!  Since the Gulbrandsen's had so much room at their home, I just kept giving her boxes and boxes throughout the year because I didn't want them here in the bedroom anymore; so it was piling up.  Tara went through all her stuff in the last week and is almost ready to move to the Curtis home (which, by the way, she is very excited about doing!!)

What was great about yesterday is that Tara had energy all day and she was happy and just BOOKING.  It was sad and a reality check again when her feet started hurting.  We will pursue homeopathic routes for her feet - Dr. Shapiro just shrugged his shoulders and said "I'm not a foot doctor" when Tara told him about her feet.  I personally think her feet trouble has something to do with either vancomyacin or the Temodar.  My sister, Jean, has a mineral foot bath and Tara tried it yesterday.  It was amazing how much brown toxins came out of Tara's feet!  Jean gave Tara the key to her house and she'll be doing foot baths weekly! Hopefully that will help.  So, Friday we have homeopathic appointments set up and we'll try that to offset the medical side effects Tara experiences.  I have her taking probiotics and slippery elm for her stomach and it seems to be helping.  Now we're trying blood root and mineral baths for starters on the feet.... chiropractor on Friday.  The podiatrist won't see her until she's done with chemo because what they do might interfere - so thankfully Tara found her orthotics and she'll just try to wear better shoes until they will see her.

As I looked at Tara yesterday, I had those thoughts that pass through my brain often, "I just want to be able to look into her brown eyes and see that smile forever!"  I just love her so much it hurts sometimes.  I have faith that I really can look at that face forever...and have more days like yesterday..... I love those moments that I can steal with all my family.... maybe I appreciate them more now after what we've been through!  Last night I stole a hug from Brigham - there is nothing like hearing "Grandma!" from across the room and then feeling little arms around my neck - it just doesn't get better than that!  Ryan & Steph are staying with some friends of ours while the parents are out of town; and I just had to stop by and see them for a few minutes....

Someone is watching over us

Someone is looking out for us. Josh and I just had an amazing experience this weekend. It started on Saturday when we learned that we needed to move. The Gulbrandsen’s needed the house for their own family…we understand…family first. The scary thing was that we only had until the 22nd of April. At first my mind started to panic but after a few minutes I felt this overwhelming peace. I just knew that we were going to be okay. Living in the Gulbrandsen home was a blessing and it came at the exact time we needed it. We were led there and we believe that we have been led to where we will be living now. Yes, in less than 24 hours of notification, Josh and I had found a new place to live. The Lord is looking out for us. Just another tender mercy, another reminder of His love. Sunday morning the Curtis’s (in our current ward) asked if they could talk to Josh and I. The word had not spread that we were looking for a new place to live. They told us after church they wanted to talk to us about moving into their home! Wait…seriously? Brother Curtis told us that he had a very strong impression on Friday to have us come live in their home. Friday was the day BEFORE the day we even found out we had to move. They were going to ask us regardless because of this impression he had. Tell me this isn’t meant to be…:) That’s not the end of it. President Stoker went to the Curtis’s yesterday to ask them to serve a mission for the Church. He went yesterday, before we met with them and discussed a mission with them. I cannot believe how this all happened. It still blows my mind to realize how blessed we are.




I know that this is poorly written and you may not understand all of it. Pretty much, the Lord is looking after us. Everything happens for a reason. There are no coincidences. Josh and I are extremely excited about this new adventure and are extremely grateful to the Gulbrandsen’s and what they have done for us and now also for the Curtis’s who have opened their home to us.



We really are being blessed through our trials.

We will be professional movers in no time!

Have a happy Monday!



Love,

Tara

PS from Becky - the reason it's so wonderful to have Tara & Josh living with the Curtis's is that both sets of parents are still CLOSE which helps a ton in Tara's situation; and also with all the $ saved by not paying rent, it helps them pay the medical deductible they have every year....and they can stay in this area where people know them and have helped us so very much.  We have a unique 2 ward family here!  The Northpoint Ward and the Estate Groves ward (both which are in a 3 square mile radius) are where they need to be - and they're still here!  YEA!!!

A much better day

So yesterday was rough but I learned a lot. It is amazing what prayer can. Once again I have learned what a blessing trials can be.

Today is a new wonderful blessing from God.

Tara

I don't want to be in pain anymore

Okay my brave break time. I am taking off my smiley face and just letting it all out. Hopefully it will make it all feel better. Venting usually helps.

I am so sick of being in pain. I could just scream. My stomach and head and neck and feet and well everything just hurts. Pain is my new normal and I want to go back. I want to go back to occasional pain. I want to go back to stubbing my toe and having that be my only pain instead of having it just add to the laundry list of other painful body parts. I am ready for this to be over. I think one of the biggest pain I want to get rid of is this pain that keeps festering in my heart is the pain of knowing that I may not be able to have my own children. Oh, I don't know how anyone manages this pain. I wish Vicodin could take this pain away..it can't and won't. Doctors can't stitch this wound back together. This is one I have to endure medicine free. The only medicine I can take for this pain is faith and apparently I need a refill... I just get so sad looking at baby pictures. I have a few friends who have had or are having kids and it is hard to say but I am extremely jealous of them. Cancer, I can handle. Being bald, while every one else has long beautiful hair...I have learned to handle...but not having children...this could take a while. I almost get angry and start cursing those who even consider abortion or fight for the right to have an abortion. Ah, it kills me to know that people don't want the blessings they are being given. I know there are others out there that are dealing with the same wound that I am and maybe in a further degree, how do you handle it? Please, I need help! All I have wanted since I was a little girl was to be a mommy. My wants have not changed one bit. I want to be a mommy. I have already named my first and second daughters! Kate and Adaline! I have already gotten the fabric for their quilts for their beds! Ah leave me bald forever...but make sure that I am a bald momma! Okay, now that I have wiped my tears and have gained control of my hysterical breathing I can finally, hopefully start to think straight. I knew this was going to be an issue. I knew from the beginning of treatment. I also knew my answer. I never remember feeling a time of more peace than of when I prayed about what to do about children. I knew then, and now know now that I will be a momma.

Remember this..."more importantly I KNOW whose hands I am in. I don't care what the doctors say because God is in control. Dr.'s would have said the Red Sea can't be parted and the blind won't see, the dead can't walk, and the dumb can talk but the most amazing thing is, with God anything is possible. I love my Dr.'s and I am so thankful for them  but they aren't in control, my Father in Heaven is. My life always has been in his hands and it will continue to stay there. There is so much peace in knowing that Heavenly Father is in control. I cannot even imagine enduring this trial without a knowledge of the Plan of Salvation and the gospel. It is amazing how much you can learn in such a short time. It is amazing how alive the scriptures can become and how immediately, everything pertains to you. Life has new meaning. Life is beautiful. "


Okay, I think my faith med refill is ready...now all I have to do is take it. I know I felt this way and I do not doubt my answer...that does not lessen the pain but hopefully it can help me heal. I just need to remember who I am and why I am here. I need to sit down and talk to myself and get through this trial. Come what may and......ahhhhh love it. Okay maybe I can learn to love this. For one, I now have more empathy for those who cannot have children of their one. Two, it will make the day I see my first child sweeter because I have experienced the pain. Three...what won't kill me will make me stronger and I am too stubborn to let this kill my spirit and hope. Four, trials are a part of God's plan. Just shows that God is still looking out for me and wants me to be the best I can be and I guess the best I can be needs to learn something new!

Okay,

Brave break over. It is amazing how much better I feel. Well, the Vicodin is kicking in for my physical pains and that help! :) But in all seriousness, I am ready to take my medicine of faith.

So, that was an odd post...thanks for reading.

I feel much better.

Tara Lynn.
a daughter of God and
future mother! :)