NORMAL CELLS!!!!!!!!!

I am SO HAPPY to announce that my test came back with normal cells!! I have to say...I did do a little dance. VERY good news because my counts are also up (blood counts) and if they keep increasing like they are then I can leave the hospital by this weekend!! YAY! My mom and dad are coming up this weekend for fourth of july and I am happy to say that I will most likely be outside watching the fireworks :)

Today I've been feeling so much better; getting food in me and I took a nice long walk with Bucha :) glad to be able to move but not over do it :D

Dinner is here so I will hopefully eat one of my last dinners here at Queens Hospital; and i have to say...they will NOT be missed.

Love you all; honestly i think it was all of your positive and healing energy sent my way that helped my bone marrow stay normal but what do i know :) thanks again for all of the support!

-savy

Some good info...

My mom sent this webpage to me about the recovery process of the bone marrow transplant. It's very interesting and I think it would be good for you all to know exactly what I'll be going through this next year:

http://www.marrow.org/PHYSICIAN/Patient_Care_Post_Tx/index.html

I love you all

-Savy

Big Toe

Hi everyone! Thanks again for the many views my blog gets a day! I hope it helps with keeping you all informed and get an idea of what my life is like in my little hospital room.

As most of you know I got my second bone marrow biopsy done on monday to see if the chemotherapy was successful in killing all of the leukemia cells. I found out on Tuesday that most of the cells were normal but they weren't sure about some so they shipped them off to the mainland and by Thursday or Friday we should know if they are normal or leukemia cells. I hope they are normal!!! I will let everyone know as soon as i find out; my Doctor wants to do 3 days more of chemo and have me stay an extra week here if they are found cancerous but my dad wants me to get to my team in Houston as soon as possible so I'm not sure what the plan of action will be as of yet. hopefully we won't have to think of that and everything will come out good!

I've been having a rough couple of days. I've been nauseous and not eating much so my energy level is low at the moment. Bucha is making sure i eat something which helps; it's just hard to eat with no appetite. my sore throat comes and goes; good one day, bad the next. and to top it off....i have an ingrown toenail on my big toe! ARGH. so now i have to soak my foot in salt water because they can't cut into my toe to get rid of it because i'll bleed too much. it hurts SO MUCH! it's like as soon as one thing starts to get better, something else goes wrong. i have a doctor who has been monitoring my rash (which is getting better) who is researching to see if my toe caused me to get a fever. i was on a 2 day streak of no fevers but last night i got one :(. the doctor also said it could be a bacteria that is associated with pedicure/manicures called cosmetica; i got a pedicure the day i got sick and with my immune system being out of wack from the unknown leukemia i wouldn't be surprised if that was the cause of it. hopefully the salt soaks and antibacterial stuff works :/

I've had quite a few visitors! The Fishers (Scott, Kumi and Derek) surprised me on monday by showing up to my room! Kumi made a beautiful necklace and bracelet that i never take off and Derek got me a pillow pet that looks just like my kitty that had to go home to kauai to be taken care of. Then today Jade surprised me by showing up! we talked...then took a 2 hour nap haha. it was so great seeing them since i won't be able to go home to kauai before texas.


i'm getting really skinny...it scares me. i want to be working out like i used to but i have to take it easy. plus, i need to keep eating. i just hate being nauseous :( hopefully a good day is in sight and i'll have my energy back. keep sending the love cause i need it!


i'll update tomorrow or friday as soon as i find out the results.

love you all

-savy

2000 page views

averaging 163 page views a day!

thanks everyone for your support :)


Travis

Another biopsy

I forgot to note that tomorrow morning i will be getting my second bone marrow biopsy done. This biopsy will show if the chemotherapy worked. we are hoping that my bone marrow is empty of all cells; information that will hopefully be back to us within a few days. if the bone marrow is NOT clear then i have to stay in the hospital for another week and do more chemotherapy. wish me luck! it hurts a lot so i'm not really looking forward to it :(

-savy

Rash

Hi everyone!

Guess what! My throat is feeling SO much better now. I'm eating my meals and drinking lots of water. My muscle spasm has gotten better and I don't need my pain killers or muscle relaxant as much anymore. Only, with me, when something gets better another thing goes wrong. I broke out into a rash that covers pretty much my entire body. Luckily it doesn't hurt but it does itch a little bit. Due to me having so many antibiotics and drugs going into me, the doctors aren't sure what is the main drug that is causing the side effect. They have given me steroids and some cream to help sooth the rash. I hope it goes away soon because i feel so gross with it all over me :(

Bucha just arrived! But with her arrival is Chelsea's departure. it was so great having her here and i'm going to miss her so much. We needed some hang out time and I can't wait for her to visit me in Texas one day :)

My friend from kindergarten came up from the big island to visit me this weekend as well. Her name is Kailie and I haven't seen her in years since I mostly stay on Oahu now for work. It's been great catching up with her and hanging out. She brought a puzzle that is very hard to do so it's keeping us busy.

I think the best news is that I have FINALLY been able to sleep! I only wake up a couple times and that's because of the nurses coming in to do their checkups and whatnot. I have been walking around and doing my exercises and I did 10 minutes on the exercise bike today :) I have energy and I can focus on things like puzzles without getting too tired now. I haven't been nauseous too! So things have been going great and once this rash is gone I'll hopefully be good to go!

Well, back to the puzzle. I love and miss you all. I'll post again soon!

-savy

Plans for the weekend

So.. I ran out of words for that last post :)

My throat has been feeling MUCH better; still tender but I am eating SOLID FOOD again! YAY! My body is still getting used to eating solid food; I've been on a Cream of Wheat and Ensure diet for a week! I still have to baby it at night but hopefully I'll be able to get a good night's sleep at some point in the next two weeks. I am definitely looking forward to that day.

This weekend is going to be busy! Tonight my friend Kailie from Kindergarten is coming to visit until Sunday! Sunday will be packed with people; Lauren and John always visit on Sunday (Friends since middle school), Bucha is coming up with Terry (YAY!), Kailie will sill be here and Chelsea leaves Sunday night. Bucha, Cassidy and Chelsea will be at my place packing up all our clothes. This is because I am going to be moving hospitals and go to Houston, Texas where MD Anserson Hospital is located. They are a cancer hospital and they had the most bone marrow transplants performed than any other hospital in the nation. We are planning on leaving as soon as it is safe for me to fly. In Houston I will have to get HLA tested and some tests done to see if I'm in remission. If I am not in remission then I would have to go through another round of chemotherapy before we even think about the transplant. Once I have my result about my HLA type we wil know if Chelsea or Travis are matches. If not then I will do a non-related bone marrow transplant in which MDA has done over 100. I am excited for the move; the nurses at Queens have been amazing but I know at MDA I will have a good experience and it will be there that I will get rid of this silly disease. We haven't figured out the small details yet of when i can go or where we will live but my parents have done an amazing job so far with setting up for this move. Me and Cassidy will sell some our stuff and send everything else back home to Kauai. Chelsea will take my kitty home on Sunday and he will be taken care of there. I just hope he and Bailey learn to be friends..he isn't that fond of big dogs.. :/

Cassidy will be coming with me to Texas; he is already coordinating with Apple about transferring to HOuston's apple store. He hopes to work the same high paying position but as part time so that he can be with me..otherwise he will be working 40 hr/wk and I won't be able to see him much at all. He has been such a big support for me and I just always want him by my side. He has been amazing with everything that has been going on and is even offering to ship his car over to Houston so that my family will have a car to use there.

I think that I need to make designated nap times for myself because I am pooped right now. I hung out with my friend Lani yesterday and today, then two other people I know showed up. My friend gave me some scarves that Chelsea is learning how to wrap on my head. It's hard to do! Hopefully I'll learn soon.

I miss and love everyone so much! I'll try and update more often but it gets hard when I'm all sick :( I didn't have too many fevers today so hopefully that means i'm getting better! I need my white blood cell count up to 500 in order for it to be safe for me to leave; I also wil find out on wednesday about how the chemo did and if my bone marrow is empty. If empty I can leave; if not empty i have to stay an extra week for more chemo. Cross your fingers and wish me luck that my bone marrow is empty and that I can leave!


Thank you everyone again for reading; I feel all the love and support you send my way!

-Love always, Sav

The chiropractic savior team

Hi everyone! So a of couple things have happened since my last blog. Monday and Tuesday were nice and mellow; me and Chelsea were just hanging out and figuring out all the questions we needed to ask Dr. Fukumoto. I kept getting fevers, especially through the nights. Nightime is the hardest for me because that's when my throat dries up and makes the sores even more painful. So to try and fix that I would wake up every hour to press my pain killer and gurgle salt water to keep my throat moist. But by doing that I don't sleep very well :( It was very hard to want to sleep because I was so afraid of the pain. To try and get sleep the next day I would attempt to eat some breakfast (cream of wheat cause that was the only thing i could eat) and then take an anti-nausea medicine that makes me super drowsy so i can fall asleep. While sleeping chelsea would press my pain button and wake me up now and then to moisten my throat. It helped but I still haven't gotten a lot of rest...I think I need some nap times during the day :)

So wednesday I was supposed to shave my head but some blue barf and other events interrupted me. Chelsea went and got her HLA blood typing done in the morning with Cassidy so I was alone for the morning time until they got done with the testing, eat breakfast and find me a cute hat to wear after they shaved my head. At the hospital the nurse Michelle (my favorite) gave me 4 HUGE Potassium pills to take since my numbers were low. After a couple of hours I was starting to get nauseous and I knew that I was going to throw up. Michelle went to go see if there was something she could give me to help. Literally 2 seconds after she left I threw up. What did I throw up you ask? BLue. I looked down and was like "BLUE?!?!". Michelle walked back in and I said "It's BLUE!!!" She looked at it was said "Oh that must be from the Potassium". So, unfortunately, the Potassium pills made me throw up a couple of times that day and I was sad :( By the time Chelsea and Cassidy came back my energy was gone and I was just tired.

We had a lot of questions that day to ask Dr. Fukumoto that were crucial for us to know to start planning our next steps at a different hospital. While waiting at approximately 3:00pm I had a spasm/sharp pain in my back after I was leaning over on a pillow. I immediately thought that my rib has popped out and that this was NOT what I wanted to go through right now. I had very deep, shap spasms in my ribs, back, left shoulder and diaphragm, making it hard to breathe. It took an hour for the nurses to contact Dr. Fukumoto to see if we can get an x-ray or to come by and check on me. He was able to precribe me a muscle relaxer after he answered all of our questions. I had contacted my chiropractor I work with at Diamond Head Chiropractic to have him come help me because I knew a muscle relaxor would help but not fix the problem. Dr. Jesse the chiropractor finally arrived at the hospital around 7pm and he was able to tell me that my ribs were fine and that the pain was from my muscles in my diaphragm and a lot of other muscles on the left side of my torso were in spasm. His first goal was to get me back into a correct position because while being sick for the past week my body and spine had pretty collapsed and my muscles have gotten so tight that they all couldn't do their jobs anymore and gave up, basically. I have been moving my whole life and now suddenly I'm not moving for a week. My body moves every easy and I have to constantly be stabilizing my joints and body in order to keep it happy and in good posture. The second I stop stabilizing (like when I'm very stressed with school or sick in bed) I get in a lot of pain because my bones are going too far out of range. Jesse had to remind me how to use my muscles again and to use them more often. He adjusted me lightly and did some muscle work to loosen up the muscles but took care in making sure what my mind could handle my body might not be able to. I was able to sleep some hours at night and took another muscle relaxer in the morning because the sharp pains were back. Dr. Erik from Diamond Head Chiropractic was able to come thursday morning and he did some muscle work as well. They helped me so much and I am so lucky and grateful that I have them to take care of me when I am in pain. Today I am feeling much better; still get some spasms but I've only taken the muscle relaxer once today. I'm able to move around easily and I just need to make sure that even if people are visiting that I get my exercises in.

Some information on becoming a bone marrow donor for Savvy

Hey everyone!

I think there may be some confusion as far as becoming a possible bone marrow donor for Savannah. From the information I gathered, registering to be a donor on marrow.org only puts you on the national donor list and does NOT allow for you to be a donor for a specific person. Edit: However, you can register to become a donor with the national registry. They will do your cheek swab (free of charge) and if you request them, send you your tissue type results!

I found a website called BoneMarrowTest.com. It has some good information as well

Per an oncology nurse at Tampa General Hospital, one way to have your HLA (Human Leukocyte Antigen) type tested is to get a referral from a physician. You then would go to a local blood services agency or diagnostic lab to have the test performed. Edit: Not every agency performs HLA type tests. Florida Blood Services does NOT!

You can order a Stem Cell HLA Typing test directly through www.BoneMarrowTest.com or by contacting Kashi Clinical Laboratories as well. It costs $175.

I am unsure of the cost of going through a physician referral but my guess would be that it would be a cheaper option. Edit: Quest Diagnostics DOES HLA type tests. See below!

Also, just so everyone knows, an HLA tissue type test is a simple cheek swab! It is not painful and takes a matter of minutes.

Feel free to contact me with any questions at tmendels@mail.usf.edu.

Big Tam

Hematopoietic Stem Cell/Bone Marrow Transplantation- Quest Diagnostics

Initial HLA screen for transplant recipient and genetically related potential donor(s)

[15484X]–15484 $695

HLA Class I A, B, C DNA Typing

[15485X]–15485 $335

HLA Class II DR, DQ DNA Typing

Determine HLA type of transplant recipient and unrelated potential donor(s) Second-level testing for determining HLA type in transplant recipient and genetically related potential donor(s)

[17397X]–17397 $395

HLA-A High Resolution SBT Typing†

[17396X]–17396 $395

HLA-B High Resolution SBT Typing†

[17395X]–17395 $395

HLA-C High Resolution SBT Typing†

[17393X]–17393 $395

HLA-DRB1 High Resolution SBT Typing†

[17394X]–17394 $395

HLA-DQB1 High Resolution SBT Typing†

[17398X]–17398 $440

HLA-A2 Typing with Reflex to A2 High Resolution SBT Sub typing†‡

Update from chelsea

I guess i should up date you all on the latest news from the doctor as of yesterday. Dr. Fukumoto has received some genetic results from the bone marrow biopsy (although the entire bone marrow biopsy has not come back yet) and from what he can see so far, Savannah is on the intermediate to low risk of survival, and so that means that a bone marrow transplant will probably be on the horizon. Now there is still a chance that the induction chemo could pull thru and kill all the blasts (leukemia cells) and put savannah into remission. this is still a one day at a time process. In the mean time Me and trav will be getting our HLA typing done which will determine if our genetic make up in our bone marrow matches savannahs, there is a 25% chance one of us will be a perfect match. Savannah will be HLA typed after the chemo has left her body, so not for another 2-3 weeks. Savannah has a fabulous attitude about her and I can't tell you guys how much your support gets her thru each day. I would recommend that all of you keep sending her your love and support, I know that its hard for her to talk on the phone for very long, but she absolutely loves getting mail, whether it's a card (she posts all of her cards on the wall) post card, letter or care package, it helps!! We are getting trav to refine the blog so that posting comments will be a bit easier, I know it's kind of difficult to figure out, but she also loves to read her comments. To post a comment create an account with blogger and from your profile you can follow sav's blog and post comments.
Every comment counts!! Thanks everyone for all if your suppor
<3 chels

Dreams that I've been having to deal with being in the hospital

Weird dream; me, mom and Chelsea go with Bucha and juju to a outdoors pilates yoga class. We also go to get some sun first at a beach I know at. This is after I just get done out of the hospital. Juju goes in the water near the rocks and wants to crab walk on them, naked doing yoga moves
Me mom and Bucha find ourselves not where sand is anymore but a fenced in waterway that has the water coming all the way up to the road where sand used to be. Sand surfers and whatnot are coming in and out so we cancel those plans and try to get juju out of the water who is propelling herself onto of the water with one leg and the other leg perpendicular to the water and up in the air
So we have a dark green scion xb rental and as my mom parks it and I'm still in the car I noticed the brakes werent working too good. I had to change into my sports bra and I kind of put it on wrong because it had been a while since I've had one on since the hospital. I get out of the car ad notice the car slide forward and think, the curb will get it
I twist my top around and get my mom into the car cause I'm like you need to repark the car, it's slipping forward. We get into the car and she puts it in park and the parking brake on but it slides backwards and to the side.
I'm like mom!!! Fix it! So she slides it back into the parking spot and tries again but it goes forward. The she tried reversing into another spot and by now the car and my mom have such a sagging sad face because it can't stay still in a spot, I start laughing. The car is begining to get puffy and saggy and all I can do is laugh because my mom is bummed we couldn't go to our class



This dream happened in a span of an hour and it woke me up after cause I was actually laughing in bed. I have weird dreams like this ALL THE TIME here and it drives me NUTS! cause they wake me up!

I just woke up so I'll write another post later today but i hope you are entertained by this

-Savy

Rainbows and Unicorns

So as soon as I finish writing my last post, everything pretty much went downhill.

It has been a rough couple of days. As most know, I've been battling a bad sore on my uvula and it was maintaining its soreness for a while until 2 days ago. It pretty much got unbearable. I couldn't talk, swallow, eat, and even breathing hurt it so bad. It got so bad my body broke out into a 102 degree fever that wouldn't go away. They finally stopped asking me to take stupid lozenges or throat spray and actually try some pain medication like vicodin. One little pill did absolutely nothing for me. After that failed they ended up hooking up to my IV fentanyl which is supposedly stronger than morphine.

within minutes i was with rainbows and unicorns :P

It has helped but i still haven't been able to eat or drink much at all. Unfortunately it makes me nauseous so i've been throwing up with my sore throat...not fun!!!! My fevers keep going up and down and the pain fluctuates but at least it's bearable. They lowered the dosage and increased the frequency i can push my button which has helped a lot. Right now we are just concerned about me eating because I haven't eaten a real meal in over a day. However, toast night i finished my chemotherapy (yay!!) and after the initial drop of WBC count they should eventually start coming back up and start the healing process again. The doctors have me on antibiotics which will hopefully control the bacteria as well.

I had some visitors today! my friend's mom Jan came by and gave me a butterfly balloon (so cool) and a little gift. Then my good high school friend Lauren and John visited me after for the second time! so good to see them! they brough a gift our good friend sent from california; she gave me alfalfa tablets that i'm going to check with the doctor to see if they are okay for eating because they are supposed to help with appetite and good digestive health :) It was good seeing them today and they will be visiting every sunday :)

good news: i ate lunch today for the first time and did throw it up after! YAY! cream of wheat with brown sugar has been my savior :P and i'm thinking about eating some pudding as well.

Cassidy and chelsea got me undies from victoria secret today...love them! that was VERY sweet of them to do that for me.

I kicked cassidy out of the hospital today because i told him he needs to rest, get a good night's sleep and stay healthy if he wants to be my caregiver. I can't have him get sick on me! so I'm sure he liked the vacation from the hospital :) i love him so much for being here the whole time and am VERY thankful for all that he has done for me. Thank you!!

Dinner is here so i'm going to try and eat some food. I hope you enjoyed the blog; i try and get one done as soon as i feel up to it so hopefully i'll be feeling good for a while.

I love you all so much! Thank you again for your support.
-Savy

Its almost been a week!

Hello!

Today is day 6 of chemotherapy! I have only one more bag of chemo to go through before i start my recovery process, which includes fever and me going bald! it will be interesting, but i'm not scared. i have had such an amazing time here just having all of your support and love sent my way! i wouldn't have been able to get this far without all of your love and prayers. thank you so much for everything!

some recent updates: i have my appetite back! good news; they feed me on a tight schedule; bad news: for the most part the food is quite tasteless. my friend Jamie is going to bring me a dominos pizza tomorrow! i am excited. the other bad news is this however; i have a VERY bad sore on my uvula (the little dangly thing in the back of your thoat) and it makes it hard to swallow or eat. at night i drool sooooo much because my body doesn't want to swallow anything!! haha so i have to position myself so that i don't drool everywhere or choke to death while sleeping :P let's just say i wake up throughout the night because of it. They said i have the sore because of my low white blood cell count; once chemo is over and they give me drugs to increase the numbers the sores should (hopefully!) go away.

Yesterday i began my own physical therapy program! since i have been teaching PT for almost 2 years now i think i should be a good patient and start doing some exercising to keep up my strength! i'm doing leg workouts and pilates, and they have a stationary bicycle i'm going to find myself on sooner than later once i have enough energy (usually after they give me blood or platelets :))

my mommma leaves tonight; it has been amazing having her here with me and keeping me company. i will miss her! chelsea is coming up this morning to take her place. she has been painting up a storm with maile and i can't wait to see what they have made for me! as my walls become more decorated i will take pictures :) chelsea will be here for 8 days and then my bucha will come up for a week :) that will definitely help with time passsing by. i just hope they don't go crazy bored hanging out with me for that long :(

well, i hope you all enjoy the update. i promise to try and do it every so often (when i have the energy for it). i'm slowly getting more peppy so cross your fingers that it lasts! i love you all and appreciate all the support and love you have sent me! i love seeing visitors so if you have the time i would love to see you!

thank you all for reading
-Savy

Status update as of 6/14/11

Hey everyone,

I received my first update from Savannah today so I wanted to share it with you.

Today she is on her 4th day of chemotherapy and things haven't changed much except that shes hairy and getting weaker. Shes trying hard to eat the food that give her, drink as much as possible and is walking around the hospital to exercise. Cassidy has been by her side since last weekend and this was his first day back to work. I want to thank him for being there for Savannah. to quote Sav, "He has been so amazing since the day he brought me to the hospital". Shes enjoying hanging out with Mom and Dad and has got a new ipad 2 to keep her busy. I would suggest perhaps sending her kindle books to read or programs for her ipad. I spoke with Cassidy and he said they have a bunch of board games.

Thanks to everyone for keeping me in the loop and if anyone would like to make a post just email me and I can set it up for you.

Travis

Hey it's Cassidy. I just wanted to give everyone an update on savannah as of this morning... I don't know if this is new info for anyone but, her blood pressure, heart rate, and temperature levels are doing well. Her potassium is back to normal!! Which is great news cause she was really really low up until early this morning. It was at a .08 when it needed to be 3.5. Her white blood cell count is 28,000!!! That is a decrease of almost 170,000...So she should be able to start feeling better soon. So it seems to have been a good first day of chemo. There have been a few speed bumps, but that is expected, and any speed bump so far has been able to be explained. We definitely dont like the random ones!

She is still going strong and has high spirits. She appreciates all the love from everyone but is sleepy... More updates coming soon.

Sent from thE iPhone.

Question to answer

Can someone provide me with accurate information regarding these questions? if you leave it in a comment ill edit the post and insert the answers.


1. How are the stages of (leukemia) defined....and what stage is your
daughter in?

2. What is the least aggressive approach for treatment?

3. what is the most aggressive approach for treatment?

4. What are the side effects and what damage do they create for the body?

5. What is the typical timeline for this disease and where is she?

6. What is the timeline for treatment (days, months, years)?

7. What is the current cure rate and what percentage of patients are "cured"?

8. How is "cured" defined  (i.e. completely rid of, remission, rate of
re-occurance)?

9. Does your Dr. specialize in this type of cancer?

10. Does your hospital specialize in this type of cancer?

11. How many patients have the (Dr and Hospital) treated this year,
last year, etc?

Strictly Creating Realistic Animals...Mostly Ligers

If you look off to the left you will see a link called 'correspondence'. This will take you to a repository of emails that are from friends, family and professionals. This will hopefully be a good way to keep people informed on the situation without emailing 100 people at a time :)

First Post

Hello Everyone,


This is Travis. Ive created this Blog to make a place for all of the information that we get regarding Savannah Rollins' Acute Myeloid Leukemia. I will be attempting to post relevant information so that people who are concerned with her progress can remain in the loop as events occur.

Savannah will have log on access and has the ability to post status updates which i encourage everyone to follow and respond to. I know everyone wants to provide positive and heartfelt comments on her struggle :)

This Blog is in a very basic form at the moment and if you have any suggestions that will help present information is a positive way, please do so!

Thanks for your time and thoughts,

Travis