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.