May Clinic VIsit

Livi just got Vincristine this clinic visit, she has been doing so well at home with only a few pukey episodes and minimal leg pain that was easily maintained with pain relievers. No fevers this month just lots of summer fun. With school out we have been swimming, going to park and lots of playing outside!

Here is our good friend Oliver, we see him almost every time we are at clinic. Livi and Oliver love eachother so much and its so wonderful to see all of the wonderful volenteers that dedicate so much time at Primaries, the animals and people alike. I love the excitement and warmth it brings to Liv's face, she is an animal lover and I never see a bigger smile from her when we are at clinic than when she is around the animals.

Vitals like a champ!

Getting ready to access Ariel's port with the child life specialist, Rochelle.

A little grouchy today...

Getting ready to get accessed, it seems to be getting much easier these days, she still flinches but at first she doesnt even want anyone to hold her hand (I end up holding it to keep her from pushing the needle away at the last minute) but she tries and has all the determination in the world, and thats all that matters.

Scrub scrub scrub!

Good job!! She actually thinks its super cool to watch her blood come out, she is so interested in all of the things going in and out of her body.

Clinic Stats:

Weight: 42.6 lbs

Height: 106.8

ANC: 6.0

2011 Dance Recital

Livi started dance in October of 2009 she loves it and really is a natural, so I didnt want to keep it from her. She loves music and her favorite thing to do is dance around the house listing to Justin Bieber or Enchanted. This year her recital was at Mountain View High school, and the whole family was so excited to see her stuff!

After wards she got flowers from grandmas and grandpas, she was so excited.

Here is Livi with her adorable cousin Kynzie, we were so lucky to get them in the same class this year! I was so happy Livi had a friend I had put her in dance before I put her in school and I was so nervous to see how the other kids would treat her when she didnt have any hair. But with her best friend by her side, she was as confident as ever!

And she did an amazing job! You would have never noticed that she was sick or had been sick or that she had missed half of the classes! What a sweet baby girl I have.

Pre School Graduation

This year Livi was able to attend a little bit of school, she probably got to go a total of 2 months, but she loved every second of it. It was so cute watching her go into class and all of her little class mates greeting her and hugging her. The sweet heart just soaked up every second of it she could. She learned a lot this year and I attribute that to her amazing teacher Mrs. Rebecca, she is so wonderful and was so awesome about making sure no one was sick and making sure everyone used sanitizer. We love Kids Village and look forward to Kindergarten there next year. Thank you to all of the wonderful staff that made this year so wonderful for our family.

This is Livi last year at her last preschool graduation with Ryker, Daddy and Mommy, just 3 months before she was diagnosed.

And this was our little angel this year. Who looks happier than her? There was no wiping that grin off her face today! We are so proud of you Livi Lou!

Her with her cousins and best friends Jarrett and Kynzie who came to support Livi.

Here is the family shot from this year, our lives have done a complete 180 since the last graduation ceremony we attended but at least we are all still together and nothing makes me happier.

April Clinic Visit

Well we made it through Maintenance course #1! The courses consist of 3 month cycles, the same 3 months over and over for the next 2 years. And yes only going to clinic once a month still is heaven, we love it! This month at clinic Livi got her dose of Vincristine and a LP with Methotrexate. First LP in 3 months, wow going from getting them so often to only once every three months is so wonderful words can not describe, no more head aches, back aches...This time daddy got to come with us too! Chase has only been to clinic a few times and I think this was his first time experiencing the whole RTU (rapid treatment unit) thing. I forgot my camera this time so I dont have any pictures :( But here are some of Livi's hair, its growing like crazy!

Clinic Stats:

Height: 107.5

Weight: 19.5 Kg (42.9 lbs)

HCT: 34.8

WBC: 2.1

ANC: 1.10 (1100)

Easter Time

Holy cow it is taking me so long in between blog posts! Sorry guys, but please bare with me, my brain has sort of turned into moosh these days. But we had an amazing Easter. This year all Livi asked for was a helmet (santa got her roller skates and she hasnt been able to ride them because its too cold, well when it warmed up we realized he forgot to get her a helmet...silly guy) and all Ryker wanted was "Guys" he loves little action figures of anything so the Easter bunny got him some UFC fighters, I dont watch it, but the guys looked cool enough....Then they got just lots of little fun goodies and bubbles and clothes, the regular fun Easter stuff, they loved every second.

We went to Sacerment meeting with my grandparents and aunts, uncles, cousins, and so on and so on, it was really nice to have so many people watching my kids so I could actually listen! After church we went to my moms and had a huge dinner. She made the most delicious ham along with salads and treats...all that awesome yummy Easter stuff. Then we had an awesome Easter egg hunt for all the little kids! My mom is so funny and always gets way too many eggs, so they arent really hid they're just sort of all scattered on the lawn. It makes it much easier for the little ones, but a little dull for the bigger ones. All in all its a lot of fun!

I was a little bit emotional today thinking about the real meaning of Easter. I am so grateful for my kids. I just have to remember that they are in this with me, I wasnt the only one who chose this life, they are stronger than I am because they accepted the challenge for themselves, I admire them so much. They are such a blessing in my life and I dont know what Iwould do with out them. When the stress from doctors appointments, fevers, medicines, and all the worry fades away its so nice to relax and just enjoy my wonderful family that I have been blessed with.

Clinic Visit March 2011

This last month has been pretty rough for Livi, for all of us really. We ended up in the ER two weekends in a row because of fevers, one of them was right after the Mrs Utah pageant :( But each time she was sent home after getting IV antibiotics. I was very surprised she wasn't admitted the second time because when we had had her counts done just the day before they were only 300, so here we go, we know the drill, so I drove clear up to Primaries instead of just going to a closer hospital which is just what I have been doing lately and we get up there and that little stinkers ANC had jumped clear to 2400!! What a silly girl, I was so happy though that we weren't spending the night.

Clinic was the same as usual, she was just getting Vincristine through her port so it was a relatively short visit. We checked in, Livi got to make a cute little craft and we were called back.

CLINIC STATS:

Height: 170.2 (Growing so fast!)

Weight: 19.2

We went back to our room and met with the nurse practitioner and then our oncologist, Dr. Sprayker, who we absolutely love! Livi is so funny, she is NEVER shy but when we get to clinic she doesn't like to talk to anyone...go figure, I wouldn't want to talk to the people who were sticking me with needles either. But afterwards she talks and talks about everyone. She always says "Mom I really like my oncororgost, she is so nice and she makes me all better!" Isn't that the sweetest thing?!

The drive home was a different story, she got sick of course, as always but this time in my car! I need to follow other moms instruction and keep a "barf kit" in my car....I had one at one point but she get so sick so often that I ran out of those nifty little blue throw up bags that they have at the hospital. She was not a happy camper at all. She fell asleep before we got home though so thats good. We went and got Ryker from our lovely babysitter Aunt Jessi and headed home to finish out our month, and our week with STEROIDS.

Yes the horrible steriods once again. Livi will be on steroids for a week a month for the next 2 years. I really dont know if I can handle that...especially with Rykers new diagnosis I read that some of the treatments for seizures is steroids. K I dont know who thinks this is funny but having 2 kids on steroids with no husband around....Im going to need an army to help control my kids.

This week Livi binged on chicken nuggets and corndogs and fruit snacks. Im not kidding when I say this girl could seriously eat us out of house and home. She went through and entire bag of chicken nuggets by herself in ONE DAY. No joke, then when I ask her how many corndogs she wants she says "Umm, I just want like 4." Yeah, 4 corndogs for breakfast, not the small ones either, Im talking regular sized corndogs. We have decided her and my brother Justin are going to have an eating contest the next time she is on....She will seriously probably win!!

I just want to give a special thanks to all the people who are praying for our family. I can feel such a difference in our home the last few days. I feel like everything is going to be okay no matter what life throws at us. So thank you again for being so wonderful to think of us. We love you all!

My Little Guy

This is my wonderful baby boy Ryker. He is 2 years old and the most amazing little guy in the whole wide world. He is my rock. He finds humor in everything, loves to make everyone laugh and has the best personality EVER. I wish I had a few of his traits....well as many of you know Ryker has always been a little different. His voice has always been hoarse and grawly, almost like if you watch The Little Rascals, he sounds like Froggie. Its just always been Ryker, but as time went on Chase and I started to become worried because it wasnt going away. He talked like this all the time, never giving his vocal cords a break and if any of us even tried to mock him we would have to cough or clear our throats. This just wasnt normal. He also has a very large bottom lip that we know wasnt hereditary....This thing has always been pretty big. Strangers or people that didnt know him very well would often ask me if he had fallen on it or if he had a cold sore or something....nope.....thats just Ryker. I have taken him to his pediatrition many times, and his ENT, no one ever had an answer. The reason why his lip was big is they were telling me that he chews on it....well I've never seen him chew on it but ok. Then the excuse for his voice started out as he was forcing it, just making his voice do that. Then I changed ENT's, he thought Ryker had acid build up on them, he scoped them and nothing.

As frustrated as I was, I just thought I needed to see if he would grow out of the voice thing so I waited almost 6 months and nothing was changing. The only thing changing was Ryker was starting to talk more and we were hearing this grawling voice more and more. I changed ENT's a third time and went to Dr. Heidi Heras (who I absolutely recommend) she was the first person who sat there and listened to him talk for quite a while, and was so interested in him that she wanted an answer, right then and there we made an appointment to place tubes in his ears, take out his adnoids, and do a throat scope to check for anything that might be causing this voice of his. She also wanted me to see someone a little more familiar with this sort of thing so she recommended me to an Oral Maxillofacial Doctor named Dr. William Mcbee. We got in to see him about a week later. At first he was more interested in his bottom lip and looked very closely at it and at first he had decided that it was clogged saliva glands and for me to bring him back in 2 weeks or so and we'll see if it looks any different. So in 2 weeks I take him back and Dr McBee has what he thinks another idea as to what it could be. He spoke to a lot of different pathologists and they think it could possibly be Granulomas, and they wanted to do a biopsy of his bottom lip. I told him about Dr Heras doing the tubes and everything and since he was already going to be asleep he was going to have her do a small biopsy for him so we could get this figured out.

March 15th comes around and its Rykers big surgery day! He was such a trooper and did so well....all except for the part he had to wear that gown...he was not having it!! They placed tubes, took out his adnoids, put a scope down his throat to look at his vocal cords and did the biopsy. Then we got to play the waiting game. I wasnt getting the results back for 2 weeks. The stress begins! I had to wait till April 1st to get in and see Dr Mcbee!!

March 31st I get a call from his office saying I needed to bring Ryker in so they could take more pictures of him, I asked if they had the biopsy results were back, the nurse said she would ask the Doctor when suddenly he gets on the phone.

"Hi Mrs. Cooper, this is Dr Mcbee, we got the results back, its not Granulomas."
me: "Oh well thats wonderful news!"

Dr:"Well okay heres the thing, the pathologist that did Rykers biopsy called me and the first question he asked me was does Ryker have an oddly toned voice? I told him yes, and he said alright then we have a diagnosis for you. Its something called Lipoid Proteinosis, its extremely rare in fact so rare that I dont think many pathologists would have caught it. "

me: "well then the voice and the lip are all tied together oh wow, so okay what do we do from here?"

He couldnt really tell me much over the phone, because he didnt really know much at all about this, he had never even heard of it...he wanted me to come in the next day as planned and we would talk more then.

So the next day I go in to the office scared out of my mind, the doctor comes in our room and the only things he could tell me were that this is so rare that Ryker will not be able to be treated here or anywhere close to here, in fact we dont even know where the study group is that studies this disease, but we're going to find it. Its so uncommon that it normally only happens when parents of a child are related.(Which in fact Chase and I are not!) Its so rare for 2 people to have this same gene that makes this ECM1 gene that this is probably going to be the medical discovery of the century, not only that but Ryker also is the youngest person to ever be diagnosed with it. He told me to go home and do some research and he would do the same and we would meet back in a few weeks and compare notes. He also took pictures and a video of Ryker that the pathologist wanted to show at a conference in May. So as of now we have no answers, nothing. Just that Ryker is a very special little boy which we always knew. Its just so frustrating that no one could give me any answers. All I know is what I have read online and off a few papers that the pathologist had faxed in, which are very scary. It basically said its the head and neck disease. It messes with everything, your brain, voice, face....The brain one scared me really bad, it causes severe epilepsy and mental retardation. It said that it mostly messes with their temporal lobe, which controls your emotions. Anyways, I'll let you know more when I find out more but as of right now I know nothing. Everyone I believe that everything happens for a reason, and there is a reason I was handed this. Please pray for Ryker now as you all did for Livi. I have very special kids and I wouldnt ask to change them for anything.