Happy Birthday!

Happy Birthday Jenni! She's the big 23 baby! Last night Jessica and I went up to see Livi, Jenni, and Chase. Livi was doing pretty good. Jenni said she was having an angry day. Who wouldn't being stuck in that hospital room all day every day?! They had some activities with Livi to help. She made some play-dough to punch and take her anger out on. Did it work? Jenni said it did a little. To top it all off, she was given a steroid that gave her a little "Roid Rage" but she was still such a trooper! We pulled a few smiles from her sweet little face. :) GOSH I LOVE HER. After sitting there with Liv, Jenni, and Chase and some much needed delirious laughing, we left around midnight.. oops. On our way home, Jessica and I planned to do something for Jenni for her birthday so we ordered a small ice cream cake from Baskin Robbins and expected like 10 people to go up and celebrate with us the next day. Well, because Jenni is so loved :) a LOT more people showed up. But of course we were all so happy for Jenni to have so many friends and family there! As we were walking to the patio, out of the elevator walks Jenni... umm... Surprise! ha ha! Oh well. Tiny birthday cake and all... it was still a success. But here's a tip for next time: a cake for 12 doesn't easily feed 20 people... but it still can! :) I'm sure it was delicious.. I sacrificed my piece but it was well worth it! We got Jenni out of the room for a bit and celebrated her birthday. That's what was important. Thanks to EVERYONE who helped get it together and everything! We couldn't have done any of it without you...

Around the time when everyone was starting to leave, Jenni's cousin, Gentry came down from Livi's room with some news that Alivia had woken up with a fever and in a lot of pain. She got a shot earlier in her leg.. hopefully Jenni can fill in the blanks with all the info about it. But anyway, the doctors did warn Jenni that it is a VERY painful shot. So that's probably the reason for the pain. Jenni went rushing up to her room and I guess they gave her some tylenol and back to sleep she went. What a relief!

We love you Jenni and I hope we made your day a little brighter!

*thanks to Kelsi for the picture

WELL.....This has been quite the roller coaster. I cant even descibe how i feel about all this. Then to top it all off im getting sick! a head cold....I've got the sniffles and the sneezes. Talk about perfect timing! Right when my daughters immune system is completely gone my stupid body decides to get a cold! Im overdosing on vitamin C and trying to sleep....(impossible...) But what can ya do?
There is so much to learn, nutrition, medications to give, how to watch for any sign of infection, how to clean my house when she comes home, what to do for her port, when and why i should bring her in for emergencys, when to call 911, lumbar punctures,.....I mean the list goes on forever and is really overwhelming. But i have to do it, what choice do i have? I just think its funny when they are telling me; "dont freak out, just stick to the basics, dont check her temperature every hour, just watch for her to feel sick." Oh boy....do they have any clue who they are talking to?? I am the king the queen and the joker of freaking out, and no one is going to be able to do anything about it. If someone told you, if your child has a fever of 100 degrees or higher, rush her in to the ER as quickly as possible because she could have a life threatning infection, what would any parent do? You bet cha, there will be thermomiters in every room of my house and I will be taking her temperature every chance I get.....Sorry nurse, I'm a Johnson, get over it. I do want her to live as normally as possible through all this, but its going to be pretty stinkin hard. She cant go to the grocery store, birthday parties, the movies, the park, other kids houses, when people come over they have to wear masks, no more kids meals, all the medicication, I mean this is a total lifestyle change for her, and me. Its going to be so hard at first. But I have every reason to believe that we will be able to do it.

And...

I just got off the phone with Alivia's grandma (Michaelle) and Alivia just got out of surgery. She didn't have to have any of her mastoid bone removed but that doesn't mean that she won't have to have surgery to remove it maybe again in her life. But this is great news for now! They drained the infection so hopefully that ear won't be bugging her anymore. And I guess someone had ordered chicken nuggets and she got them delivered them to her in the recovery room :) I'm so glad she finally gets some relief with that ear! And that she got her chicken nuggets!

update from Jenni

**WELL......after a very long and hard day Livi finally went in to surgery at about 7:20 this evening, when it was scheduled for 11AM, then 2 PM, then 430 PM.....So the poor darling was not allowed any food or drink ALL day long because they kept pushing her surgery back. The good news: They found no infection in the bone, so they were just able to drain out the infection and they also put tubes in her ears to prevent anymore infection. This doesnt mean that she might not need bone removed later, only time will tell. Say your prayers. Love you!

Love you Liv! You're being so brave!

Bad news just keeps on coming..

Update from Jenni

**Alivia has been experiencing ear pains, which is one of the main reasons I took her in to the doctor in the first place, they took a CT scan on monday at Utah Vally and didnt find anything wrong: thats when they started doing blood work and found the cancer. Well the ear pains never stopped, in fact they got worse. Today the Doctors took a closer look at the CT scan and found fluid in her mastoid, which is the bone behind the ear. This is called Mastoiditis, an infection in the bone. They are doing another CT scan tonight to see if it has progressed at all, then tomorrow she will be having surgery to remove the fluid and perhaps some of the bone that might be infected. Please please pray extra hard tonight for her everyone.

They did decide to do the surgery today and still have yet to take her in. Poor Livi has been starving all day for no reason! Its getting very frustrating for Jenni and Livi! She talked to her cousin Kynzie on the phone and said "..I just wanna go home and eat chicken nuggets and fries... and chocolate milk!" Hopefully she goes in soon....

What's the right decision?

I took my kids up to see their cousin Alivia today. They are so close to her... basically like brothers and sisters. My sister in law Jessica (Jenni's sister) brought up Jenni's little boy Ryker and I took my kids Jarrett and Kynzie. When we got there, Jessica, and Jenni and Ryker were all outside the front doors of Primary Children's. We decided to go eat first and then go up and see her. I could tell it was good for Jenni to get that little break and go eat. And Ryker was so excited to see his mama! Jenni said they took Ryker in to see Livi and within the first 10 minutes they were fighting.. ha ha! That's brother and sister for ya!

When we were done eating, we took the kids up to see her. Kynzie is 3. She doesn't really understand what is going on but all she knew is she wanted to play with Livi! In fact when I told her we were going to see Alivia, she said "OH! I need to wear my Snow White dress! Livi will LOVE it mom! " And my Jarrett is 4.. almost 5. He understands a little better. We walked in and they both said hi to her, being very careful not to hurt her. It didn't affect Kynzie.. she wanted to hop up on her bed and play with the toys we brought for Livi! But Jarrett, who is very tender hearted, had a harder time. He told his grandma Michaelle that he couldn't see Livi like that and he needed to go out. So they went for a walk while Kynzie played with Livi like crazy. I can tell she misses her a lot. When we left Jarrett said his goodbyes and we walked outside. Once we got to the car, he cried and cried for Livi saying he misses her. I felt so bad for my little guy who didn't quite understand what was going on... but understood enough that Livi was very sick. And all he knew is that he couldn't see his cousin that he loves so much hurting like that.

And so I ask.. what's the right decision? I can't help but feel responsible. I know it was the right choice to take them to see her. It's just so hard when they get so sad. Alivia needed to see her cousins. And they needed to see her. They love her SO much!!

Livi, we love you and know you are strong enough to fight this. And we will all be right there fighting along with you! Hang in there!

Hello everyone!

This is Alivia. She is 4 years old. She is one funny kid! She has quite the personality! Sweetheart, loving, tender hearted, playful, outgoing, happy, smart, talkative... all mixed together with a kick of diva. She is our little angel and we love her SO much! It's hard not to! :) She loves EVERYONE! And she'll be your best friend in a heartbeat. And all who get to meet her fall in love with her instantly. That's our Livi.

On Tuesday July 27, 2010 she was diagnosed with Pre B Acute Lymphocytic Leukemia (ALL). On Monday her mom (Jenni) took her in to the doctor because she was complaining of an earache. The doctor decided after hearing her symptoms it was much more serious so he sent them straight to Utah Valley to be admitted and for some tests. Then soon after they diagnosed her with Leukemia (they just weren't sure which one yet) and they life flighted her to Primary Childrens. While in the helicopter (or "helichopter" as Livi calls it) she told the nurse all about her family and her trip to Disneyland. Once at Primary Childrens, they gave her a blood transfusion to help with her platelet count which was VERY low, scary low. That helped a lot.

On Tuesday she was diagnosed with ALL. With leukemia there are different kinds and ALL is the "good" one. The dr says it is the most curable. This is good news in a HORRIBLE situation. She will undergo 2 1/2 years of weekly outpatient chemotherapy as well as daily medications for the 2 1/2 years. We are all very hopeful that things will get better quickly and she will recover soon. She is doing so good so far with few complications. Please pray that this will continue! We know prayers are answered and they are definitely needed continuously.

Hopefully with this blog we can keep people updated on her progress. We love you Alivia! And we are always praying for you!

The day that changed our lives forever

We had just gotten home from a fun trip to Lake Yuba for the 24th with our family. It was an amazing trip and I'm so grateful that we got to share the last weekend of our "normal" life with them. We got home at about 4 PM and the kids had both fallen asleep on the drive. So chase carried Liv inside and layed her on the couch and I carried Ryker inside up to his bed. We were all exhausted after the long weekend in the sun. Chase and I started to unpack the car and bring the bags and camping stuff inside when I noticed that it was soaking wet under Livi. We left the campground in plenty of time for her swim suit to be dried, so I went over and checked and it was pee. If you know Liv you know that she has been potty trained since she was 2 and has NEVER had an accident, NEVER. So I was a little puzzled, got her changed and she was still sleepy so I put her in my bed. Then Ryker woke up about an hour later and Livi was still sound asleep. I fed Ryker dinner, put him in the tub then got him in jammies.

I went to go wake Livi up so I could do the same for her and she had another accident in my bed. I really really started to become puzzled at this point. She did not want to wake up so I pretty much put her in the bath and dressed her while she was sleeping.....She was not happy with me. She also had a fever of 101.5, and complaining about an ear ache. She had been to the Doctor two weeks before this for an ear infection and just finished her antibiotic I just thought maybe the antibiotic didnt do its job, I'll just call the Dr in the morning and get her back in. I put her in her bed and went down stairs. That night she woke up screaming. She had had another accident. OK SERIOUSLY.....I am in shock at this point. I wake Chase up and start freaking out telling him that something was wrong with her and that I needed to get her in ASAP. (Chase and I had often gotten in arguments because he thinks I take the kids to the dr for no reason, but this time he agreed with me that something was wrong.)

The next morning Alivia slept in till probably 10, then I put her in the bath where she cried the entire time. She was saying her ear hurt and behind her ear hurt too. I called the Dr and they couldnt get her in till 3. So I went about my normal day while Livi was wondering around crying or crashing to sleep on the couch. I went and got my nails done and chase had gotten home early from work that day and stayed with Liv so I didnt take her with me. (I get my nails done at my aunts house and I usually always take the kids) I got home just in time and rushed Liv down to provo for her appointment. We got called back and went into the room where they weigh and see how tall the kids are and take their temp. They were really full that day so we just stayed in there but there was a table and chairs in there so it wasnt a big deal. I told the Dr her symptoms and he thought she had spinal meningitis so he sent us over to Utah Vally Hospital.

When we got there we got sent up to the 4th floor where they admitted us and got Liv all hooked up to an IV then sent us down for a CT scan to see if there was any fluid around her brain. (because behind her ear was hurting thats what they had decided) Shortly after her Dr came from his office and started doing more tests. He asked me a bunch of questions but among them he asked if we had any history of cancer in our family. My heart dropped, not only is it hard to talk about but why would he be asking such a question? Yes, my cousin had died in 2002 from AML at age 12. He patted me on the shoulder and said ok and left the room. By this time my mom, dad, and Chase were all there with us. I felt like moosh, what was happening??

A few minutes past and he came back in. He had the results from her blood test. I dont even remember the numbers but her white count was through the roof and her platelets and red blood count was at an all time low. Oh my gosh, I knew exactly what he was talking about. Tyson had the same thing happen to him. This is what they told his parents when they found his cancer, was this really happening? This cant happen, not to us, not twice in this family, Your wrong, check again...all these things were racing through my mind but I couldnt find words to say anything. Then he said they were only 85 % certain and they wanted to put her in an ambulance and take her to Primary Childrens where they have Oncologists that can give me a more certain answer. I went out in the hall and was completely numb. A nurse came walking by and let me go into an empty room and my mom followed and I had nothing to say, I was just numb. When I got enough of myself back I walked out of the empty room and her Dr was standing right outside. He asked if we had insurance because they wanted to life flight her to Primary Childrens. Her red blood count was so low that she needed a transfusion right now. It still hadnt hit me. I was waiting for them to tell me we were in that 15%, that she didnt really have it. So we waited, my dad kept telling me to tell the Dr that we had been boating all weekend and maybe that had something to do with it, just over and over and over. My dad, not being an emotional man this was his way of caring so much but he couldnt show it any other way. The life flight people came to take my daughter, I wasnt allowed to go in the helicopter with her. I asked the nurse that was going on the plane with her where I was supposed to go, she told me the ICS Unit and if I couldnt remember that, just to ask for the cancer kids unit. Thats when it hit me, hard. My daughter is going to the cancer kids unit.

These are the only pictures I got that day, saying goodbye was so hard, I didnt understand at all why I wasnt allowed to go with her. Standing on the ground while they flew away with my baby girl I was literally in shock, and started balling histarically, but I bucked enough to walk to my car and somehow drive home and get somethings packed for who knows how long we were going to be at the hospital and make the drive to Primary Childrens. I didnt know how I was going to drive, I was shaking so hard, I couldnt breath and I couldnt stop sobbing. But I had to do it! I got in my car and just sat there for what seemed like forever and started the drive home without my daughter.