CureSearch Walk SLC!

Well, I'd say the walk was a huge success! The goal was 50k and at closing the total was up to 72k and counting. YAY! It was a good event. green bandannas were worn by all the participants. Different shades represented different things. Ours was lime green to show that we were walking on behalf of some one in treatment. (you)

There was a moment of silence and a balloon release to honor those that have passed.  My heart aches for those families. So many have  passed before you to get the treatment and odds you have. I am so grateful to them and their families.  I just wish it didn't have to be this way. One life lost is too many. That is why we are doing what we can to help find cures for other children. I hope as you grow older you can understand all of this and continue to teach people to care and help others. You are doing it now without even knowing it. You are an inspiration to many. We love you!

Live it up girl!

2 years ago today I found myself running around from the pediatrician's office to labs and radiology, back to labs and then up to Primary Children's Medical Center. I knew you had an ear and sinus infection, but I was not prepared for the news I was about to receive. The doctor called as the results from the tests he had done came in. 1st the ultra sound. I thought the antibiotic you had just finished up had caused bloating and loss of appetite. But Doc said you had an enlarged spleen and liver. Then I thought Mono. Doc said Mono would be a good case scenario at this point. Then the blood work came back. He sent me right up to PCMC, gave me his personal cell # and said  "plan on spending the night they will probably have to do more tests" I hung up the phone. I started replaying some of the things he had said. " possibly cancer, certain blood disorders blah blah blah ...." Lots of medical terminology I couldn't understand. I still was convinced it was Mono. I had one very sick little baby who was getting worse by the minute. As I packed a bag for us I started to realize that he meant NOW. Like hurry. Oh my gosh he gave me his cell#. Doctor's don't do that. Then the panic set in. It  wasn't long before were in the ER. They pumped you full of antibiotics and told me that you were septic from the ear infection and you had no red blood. You were going to need a transfusion. AHHHH! Another person's blood in MY baby? I don't even like to share drinks with people. And they were going to put another person's  blood in  your sweet, pure body. Your heart rate was 205- 214. I knew that was bad. It was then that I realized you were now fighting for your life. The Docs started saying " it looks like Luekemia" What?! But you were a baby! Babies don't get Leukemia. I freaked out of coarse. Growing up everyone that I heard of having it passed away. You were moved to ICU, and given blood. The next morning oncology (Dr. Wright) came in and confirmed that indeed it was Leukemia. So they immediately started their POA. Surgery to have a Broviac ( a type of port o cath) and chemo would start right away. She at my request waited until the last of all the test results came in. Then it all began. I was so angry that there wasn't options or plans to chose from. I felt so helpless. Over the next week I watched you suffer like I've never seen any one suffer before. And amazingly, you still tried to be cheerful and happy. In the first 5 days, you endured 2 red blood transfusions, 1 platelet transfusion, surgury for the Broviac, a spinal tap, a bone marrow asperate, tons of meds. Steriods, blood pressure meds, pain meds, antibiotics, Vincristine, PEG shots, benedryl, and that's just what I can remember. Not to mention so much fluid you looked and felt like a water balloon,  Xrays,  all the pokes for IV's and all the dang monitoring. 

Well, I'm so glad we made it through that 1st week. We still had a lot to get through and we sure did. You did it baby. It is now 2 years later and you are still here! I couldn't be more blessed. You look so good. You act like a spitfire and are so full of life and energy it drains me sometimes. You add so much love and life to this family. You are such a strong and determined person with a heart just packed full of love.

Today you had your blood drawn. Just a CBC to check your counts after the Doc increased your meds. YAY! Everything is as it should be. I am so overjoyed. Counts are good and no increase of meds for now. Just bout 9 more weeks of treatment left. My goal is to keep to well and out of the hospital. No fevers or virus PLEASE!

You are having so much fun this summer. Here are some pics from today. 1st, the blood draw, then Jenna at her finest! I love you Jenna.

Cure Search

  Okay, so I don't know where to begin or how to start with this. I usually just blog as if I am speaking to Jenna. It's just my way of sort of journaling  for her since she is so young and doesn't really understand what she is going through. I try to write my point of view for her hoping that someday she will be able to read and understand what we are going through without my dwelling on the gloom. But now I am writing for  anyone who listen.
Cure Search is having a walk in SLC this year. July 9th as a matter of fact. I know, I know it is very short notice but at least it doesn't give any one time to forget right? This such an important cause. I beg you all to to think, consider and check into it, and most of all I am begging you to donate. Anything, $1, $5, $50 whatever, it all adds up. If you have time, please join our little Jenna and I as we walk for all the children who have had, do have and most importantly.....WILL have cancer. The numbers of children diagnosed each year are astonishing! You may not realize how many children there are in Utah with cancer. I know I didn't. You don't see too many sick bald headed children out and about. There is good reason for that. You see, they are probably sick in hospitals, being treated in hospitals,  sick and on meds at home or just  stuck at home sheltered from all the outside illnesses and germs from a compromised immune system due to their "TREATMENTS"  But I promise you they are there. Lets not forget the special angels that have already passed as well. Most of them passed even after suffering through their " treatments".
Although treatments have gotten better, I don't think it's nearly good enough. So many children had to suffer and die to get us to the point we are at now, but still we are losing precious lives. Jenna's cancer had very good odds, some are not so lucky and even with her odds, I don't think its good enough. NO child should have to suffer the treatments we have now, and NO child should perish from Cancer or it's treatments.
It's been so hard to explain to Jenna why we still give her medicine and why we still check her blood when she is not sick in her 3 yr old eyes. No cough, no runny nose, no fever, no vomiting, etc. She is on a low dose chemo everyday  and has a weekly chemo @home and  from what I hear from moms who have older kids is that they still feel a little yucky, but it is doable. Jenna probably doesn't know what it feels like to feel really good. And what do I tell her if she figures out that the Chemo they give her monthly at the hospital is causing her to really feel yucky for about a week or so? Will she understand that we make her sick to keep her healthy? Hmm.
This is where you come in and anyone else who cares about kids at all.
Bottom line is that children's cancer research is far too under funded. We need cures for these guys. We need better treatments so  kids diagnosed with cancer  can have a chance to just be kids and live the long happy lives we all deserve. I'm  not asking for this on behalf of Jenna, she has and is already suffering through her treatments. She is almost done, only about 9 weeks left. Then all we have to worry about is a relapse which would be VERY bad , other cancers later from treatment, and late affects such as learning disabilities, infertility etc. You get the idea. I am positive. I think she is going to be just fine. I'm just saying those are possibilities.
I am asking you all to consider and pass the word on. Raise awareness and funding for children's cancer. It  could your be your child, your grandchild, niece, nephew, bratty neighbor kid , anyone. We never know who cancer will strike next. I never understood or really even thought about it until I found  myself in a hospital 2 years ago this week in July with my baby as I begged God ( and still do) to let her stay here with me and our family. Please help all our future children diagnosed with cancer.  Our beloved children all deserve the best odds.

Thank you so much for even reading this.
God Bless XOXOX

Aubrey

Please scroll down to the playlist player and click on pause before watching this video.

P.S.
The kiddos in this video are all Utah kids including a few pics of Jenna.

Think positive- right?

Well, it's hard to stay positive but I'm trying. At least your going to bed early the other night was just about sleep. I guess you just needed more. You play so hard and avoid taking naps at all costs now. Your blood draw was good on Tues. Counts are right where they need to be. Yay. With only 3 months to go I am praying we don't have any more road bumps.
I'm not going to get into details, but it looks like I will have to join the rest of the world and go to work. Not sure what I'm going to do, but I need to do something unless a miracle happens quick. Oh and believe me, I will be praying for one. I so don't want to leave you. Not yet. Not until you are older, and in school. Life is just one struggle after another right now. I'm just so glad I have you and your siblings to keep me going. Especially you and that cheesy smile. You radiant energy and your big unconditional love. You are always asking me " mommy, are you happy?" I think you are meaning  to say "are you okay?" You are the sweetest little angel. Thank you for being my baby. I love you.

Can't help but worry.

You have been sleeping since 5 o'clock. Why oh why? Is it the Vinc hitting you? Is it the upped dose of 6mp? Are you getting sick? Or, are you just tired from a long weekend of camping and fun? Please tell me it's from camping. You look fine, and act fine, but I never know with you. Only 3 months and 10 days of chemo left. I just want to get you through this with out any more hospital stays. They are so hard on you. All the antibiotics and being hooked up all day and stuck in a room is no way for my muffin to spend her time.
Learned of a couple more cancer diagnosis recently. It saddens me. Far too many. Why? Babies and children. It's just not right. Although all the cancer fighting cuties I know, have amazing spirits and are great examples to us all. It just makes me sad that you little ones have to teach us sometimes.

Summer is coming. Should have been here by now if you ask me, but I'm sure it's on the way. 2 more days of school left. You will be happy to have all the kids home for a while. We're going to have lots of fun!

Just Skipping Along

Catching up.

Well, you finally had your birthday. It was a beautiful day in so many ways. 1st of all because you are still here. There was a time when I was so afraid of losing you. I remember the days being alone in the car with you, (my sweet little unsuspecting baby). I would cry the entire way to the oncology clinic and you would be in the back seat smiling and dancing to the music or quietly sucking down a milky. I had to keep reminding myself that Leukemia was worse than the chemo you were about to receive. Anyway, it is still working, and I am so grateful for that. Secondly, the weather was wonderful. You spent the day playing with your little cousin Kip. You were so happy to just be outside with your trampoline, swings, slide, bubbles and squirt guns. I'm sure the best part for you was playing with Kip, your 2 bros and sister roonie Mikayla.  And 3rd, your dad was working out of town, so we didn't have your birthday party on your birthday but you had no expectations so disappointments. You were just happy!
We did have a party for you the following Thurs, and of coarse you were just thrilled! Nothing fancy, just burgers at the house with family and a couple of close friends and you were loving it! You're so easy to please. :)
We went to the property last weekend for the 1st time this year. It was a little rainy and crisp but it was so nice to be there! Just hard knowing that Aunt Carmie won't be there with us this summer. Well, at least not physically. I'm sure she'll be with us spiritually as often as she can. I know is at least looking over you. She loved you and I know she always had a soft spot for you.
You had your second to last back poke with chemo yesterday. YAY!  You came home and as usual, I had to fight to keep you off the trampoline. You'd think that after a spinal tap one would just want to go home and sleep off the meds. But oh no. Not my Jenna. Nothing gets her down. I love you for that! Only one more LP to go. (in August) We can do this. Only 3 more rounds of Vinc, and 3 more rounds of steroids. ( yah, not counting this one) It will be nice . May just flew by, I hope the next few months do too.  I try not to complain because you don't. I really hope you are doing as well it seems you are. I mean you NEVER complain. While we were camping you said your stomach felt stupid. Stupid? What does that mean? Was it the Methotrexate? Or was it the big ol' milky you had just chugged? Hard to tell. I  just hope that you aren't silently suffering. I pray every day for you that you will will tolerate the meds and that they will not have permanent negative side affects on your body. I'd say my prayers are being answered. I am forever in debt.
I hear so many sad things about how the meds affects other kiddos, both  acute and long term. It breaks my heart. Poor kiddos  are tired, sick,  head aches and sore backs from spinal taps, leg pain, stiff ankles, learning disabilities, the list goes on. I so wish kids didn't have to endure all this. Maybe someday the treatments will be soooo much better. Many of the other cancer moms  are participating in Cure Search to raise money for research for children's cancer. I think I'll do something too.
It's getting late and I am tired. I think I'm just exhausted from watching you expel so much energy. Seriously, we went fishing today and you did great all day on the boat. ( even on steroids) I love you Muffin.

Close to normal

Its hard to believe that you will be 3 in less than 2 weeks. I have so much to write about now but I am so tired. We had your fabulous Make A Wish trip this month. It was so amazing. You, well ( WE ) all had a very memorable time. I will have to blog about it when I have more time. But I must say that I am sooooooo grateful for everyone who donates to Make A Wish and Give Kids The World. Because of them, we were able to show you so many new things and create some very special memories together as a family. I wouldn't wish a sick child on anyone, and if I could give  it all back to guarantee your health I would, but I really wish that  everyone could have an experience like that at least once in their lifetime.  One great thing about the trip was while we were there, it was almost like old times. I hardly had time to worry about you. We were so busy having fun in kiddie paradise that I was able to let go of a lot of cares and just let you be a kid. (well, with lots of hand sanitizer involved) It felt like we were free for  a while. We got home at about 12:30 a.m. on Wed, and then you had clinic at 9:30 on Thurs. I could have waited until Tues, but that would be a week off of routine and I want to keep you on schedule the best that I can. Lets just GIT ER DONE! Counts are high right now but they chose not to change your doses until next month. They want to see if the recent increased dose will come into affect by then. I'm glad because your birthday is coming up and I want you be feeling as well as possible. :) Right now we are all walking on eggshells. It's steroid time again. Phew... We will only have to do steroids 4 more times. Only 4 more Vincristine injections and 2 more Lumbar punctures. Final day of Chemo is Sept 9th. then a big halt. What will it be like? I can't help but wonder. I know I will always worry but t will be nice to not have to put those harsh medicines in your little bod anymore. I still can't help but wonder how this happened to you to begin with. I wish I knew so that I could prevent it from ever coming back.  I still can't help wonder what I did or didn't do or what I  should have done better so that you never got the awful disease. As your mom I can't help but feel like I am responsible somehow. All I know is that I am going to do all that I know to do to keep you as healthy as I can at any cost. I would gladly take this from you and put it on myself if I could. I don't think I could handle it the way you do though. You are so happy and delightful and cheerful in spite of all that you endure.  I watch you every day with amazement. I want to be like you in the worst way. You love everyone and everything so freely with your big heart. It comes so natural to you.  I watch you and I try to learn. There are very few people like you. This world needs more. I hope you teach people to be more like you and  I hope you always stay this way. I really think you will. You have a very special energy about you.  I am so blessed and privileged to be your mom. It is truly an honor.
The weather is slowly getting better and soon we will be camping again. I can't wait. I know we are going to have a great summer!

Not So Bad

Well of coarse I ended up taking you to the ER last Thurs. You had a late nap and woke up fevered and screaming that your poor little ear and face hurt. At least I got you there at a decent hour this time. (about 5:30) After blood counts and cultures were taken they gave you some Tylenol. Finally you got some relief after a few hours of crying from the pain. I wish I could have given it to you sooner but the docs have to check you out first. I ordered your food while we waited and by the time it came you had a big appetite. That was reassuring. My awesome little girl... you passed up the fries, choc shake and cookies and ate the green beans, fruit and chicken cordon blue. I love that you like healthy food. Your counts came back great. TOO GREAT! I was freaking out. I thought there had been a mix up at the lab and if not, then what did it mean to have counts that high? They gave you Rosephin and fluids and I think we would have gotten out of there sooner but since I was freaking over counts... well I think that slowed things down. You played with the nurses and braved having your port de- accessed. The needle even sort of snagged on its way out, and you were awesome about it.  Oh and accessing it when we got there was no fun. The numbing cream had worn off and the nurse had to re do it because the 1st needle wouldn't draw. Anyway, we were home by 11:30 pm and woke up the next morning to our regular routine. YAY! It must have just been an ear infection, because the fever fizzled out on Friday and never came back.
THANK GOODNESS!

Another Fever

Yesterday was a beautiful day outside. You were able to play outside and jump on the trampoline. You love to be outside. We celebrated our friend Michelle's 35th birthday last night. It was fun. The Woods are family to us, you love Michelle like she is your Aunt.
You stayed up until 1:00 a.m. That was not fun for me and then I noticed that you were warm at about 5:00 a.m. Needless to say I didn't get very much sleep. the fever is low, only about 99.5 to 100.1. I just hope that's all it does. Really it just need to go away. I really hate to take you up to the hospital unless it is really necessary. I dread the thought of you being admitted. The meds they have to give you are so hard your little body. Hardcore antibiotics. No fun. They make you feel worse than the chemo. Oh please kick this before it turns into something! You are so sweet even though you probably aren't up to par today. It's chilly outside but I already had to drag you in from playing with no shoes, socks  or jacket. I just don't want your body to have to work at fighting outside elements  today. you are still playful and cheerful so far. I hope you an stay that way all day. I'll do my best to take care of you and keep happy today. I love you muffin.

Counting Down for Orlando

Only 15 more days and we will be on a plane to Orlando. Although I am dreading the flight with 4 kids, I am really looking forward to sunshine and new surroundings. You are excited too. You keep seeing the commercials for Sea World on TV. You can not wait to see the Dolphins and ride merry go rounds and roller coasters. Yay!  You deserve it after all that you have been through. I hope you remember the parts make you the most happy. We are so grateful for the Make A Wish foundation and all of the people who support it. It should be good timing too, not too hot and you have already had your monthly chemo and steroids so you should be feeling pretty good.  You are such an active and busy kiddo. I hope you have the stamina for all of the theme parks. If not, that's okay. I will hang with you and do what ever you want. After all, this trip is all about you. Your brother's and Mikayla are super excited too. Who wouldn't be? It's a kid paradise!
Today is a yucky gloomy day, but you are as cheerful as ever. You are hooked on ham slices with mustard. Silly girl! You have been coloring, playing with stickers, and took a forever long bath until the water was freezing cold. I had to drag out again. You really love splashing in the water.  Funny, you have not played ballerina yet today. Oh well , plenty of time for that.
Love you

The energy today was good. Clinic went well. The Sun was shining today. Counts are good. They are a little high so the meds were bumped up a little more. Your Lumbar punture went smoothe and you woke up happy. You were so excited because today is your cancer fighting buddy's 4th birthday. You knew you were going to meet up with him at the zoo after the LP and Chemo. You talked about him all morning to the docs, nurses, techs even the the pet therapy lady. You couldn't wait to give your "boyfriend" his present. I was a little concerned that you might not feel well after clinic because you usually crash afterwards but you actually showed me once again what great strength you have. You ran, jumped, skipped and climbed for close to 3 hours at the Zoo with Carson. Nothing slowed you down. The two of you were so happy just to be together. What a great time! I love to see you two play together. You have so much in common that you don't even realize. All you guys really know is that you are friends and you like to play together. Nothing else matters when you are together. So much to celebrate! Our friends the Wilcox family were able to ring " The Bell" in clinic. After about 3 and a half years of treatment Blake had his last chemo today. YAY! I can't wait. Only about 6 more months for you, and only 2 more LPs. Happy Birthday Little C man and congratulations Blake! It's nice to have something to rejoice about and these are 2 very special occasions. Thanks for being such a delight Nenna B !

Till we meet again..

So much has happened since my last blog. Thank goodness you did turn that corner for us . you admitted on a Monday night and released on the following Saturday afternoon. It's always a good feeling to bring you home. You do so much better in your own environment. You did end up with a blood transfusion after all. Thanks again to all the selfless blood donors :) It will be my turn to donate soon. Your fever fizzled out as soon as you came home but you didn't bounce back as quickly as I would have liked you to. Stupid virus!

I took you to finally meet your Great Great Grandma Harmer on Feb. 16th. She passed away in her sleep on the 17th. We put her to rest in the Koosharem cemetary on the 26th. It was a day well spent with your family. I didn't know how you would react to seeing her for the first time since she was so old ( almost 97 ) and in pretty rough shape, but you were as usual were very pleasnt around her. And as far as the funeral went, the same. You agreed that she looked like an angel in her casket as you smiled at her and said she went up high to heaven. We lost a good horse that same day. Ricky. He was your Grandpa Kravet's horse, but he was one that I had many fond memories of riding in my teen years and was the best grand kid horse ever.

Yesterday we lost our beloved Carmen. She was just barely 33 years young. She had been battling cancer and Lymes disease for about 10 months. It was not the cancer that took her, but a complication. ( I think a blood clott) She was so cheerfull and positive the whole way through. Reminds me of you. You two are a lot alike. Both are the sunshine of your families. She was your Great Aunt on your daddy's side. She was young, beautifull, kind, and loving to everyone she knew. She was truly an angel on earth. Now she is an angel in heaven. You loved her and she loved you. She loved everyone. SHe had a huge heart full of love for everyone in her life, but I think she felt a connection to you even before you and she was diagnosed. She will so be missed. Our hearts are broken. I will post a picture of her for you. It's one that I like a lot. We are camping at the property, it is just after you were diagnosed and about a month or two into treatment. She was still healthy then and just loving you. She was a great support to us always helping us think positive and listening to me as I would talk things out. Rest in peace Carmen Whetman Thomas. We love you forever.

8 months to go!

Oh my. Here we are again. you are snoring away in a hospital bed as I look at you and wonder what is going on in your little body. All tests are coming up neg for infection and yet your counts are dropping and your temp is rising. We've managed to keep you out of this place for 7 months. Not too bad, but still not good enough. Only 8 months of treatment left. I hope this is your last admission. I'd love to see you go allthe way to Sept. without being hospitalized.
The Holidays came and left and I was too busy to blog, but they were great. It was so nice to be able to take you to every family gathering. You got to sit on Santa's lap, play with all of your cousins and open lots of presents! We all had a good time seeing you so happy and excited.
We are going through some hard times right now, but with the love and support of our families and friends it sure makes things easier.
You are awake now and smiling at your piggy movie while you suck down a milky bobble. Hard to believe that since you are being pumped full of some really harsh antibiotics and your temp is 104. Oh and I forgot to mention that you are anemic and could use a transfusion but we are trying to get you by without one. I've said it many times before but I will say it again. You amaze me little one. You are always a delight to be around.
This morning when you woke up and realized that we were here and we didn't go home from the ER last night you said you wanted to go home. I told you that we needed to stay so you could have more medicine and you were cool with that. Then you asked if Aunt Kassie was going to come and play Play Doh with you. It didn't register with me at first, but then I realized that you were remembering your last hospital stay 7 months ago. I can't help but wonder what you think about. You are so smart. Maybe when you are older you will tell me things that you remember. I don't like to dwell in the past . I really just want you to focus on you being a happy kid living as normal of a life that you can in spite of things. Always moving forward. I try to make the best of situations like this and you make it easy. But maybe once we are through this, you can enlighten me on your perspective of how it all went. (if you remember)
Oh on the bright side of things today, your favorite PA Robert Lucas came back from a 5 month leave and stopped in twice to see you today. He brought you a cute little stuffed goat which you love. :)
Well you are reaching for me now, so I better take care of you. I love you little sister. Get well, be strong and turn that corner for us.