On Monday (4/21) the REAL Elsa came to our house to visit Lilly! An amazing company called "In What Language" set it up and it made Lilly so happy!!! She definitely needed happy days like this after the hard weeks she had prior.
Wednesday, April 30, 2014
Tuesday, April 29, 2014
Yesterday was the first day that Lilly was extremely nauseous from the chemo. Getting it every day for two weeks is brutal. Yesterday morning Lilly threw up four times in less than two hours. She was dry heaving over the toilet and it was so miserable for her. She said it felt like her tummy was "squeezing itself so hard!" She only had a couple of lifesavers to suck on and a few sips of Gatorade most of the day. She was so dehydrated. She didn't pee until almost 8:00pm!! Our home health nurse came over to give her a bag of fluids... 2,000 ml - holy cow that's a ton!! But she needed it. The nurse also did a CBC to check her counts.
Check out that GIANT bag of fluid! It made her feel so much better!!
We came up to the hospital this morning to get a red blood cell transfusion. They did another CBC this morning and Lilly's numbers dropped so much just from last night! Her oncologist wants to be extra cautious with Lilly's numbers because last time we did the chemo every day for two weeks is when Lilly's mouth bled and bled and bled, and we don't want her to go through that again. So, we are getting blood and platelets today and are coming back on Friday for more blood and platelets when she gets her chemo. Sheesh!! I'm glad they're watching her close though. One of her doctors calls Lilly a "delicate flower." She's so sensitive to the medications.
Lilly met a new friend today. Her name is Millie! They fished together for a while. :)
Staying busy making a flower necklace... She was pretending to be in Hawaii! Oh how I wish we were there instead of here!
Lilly always has a smile on her face! She's amazing!!
The day we found out Lilly had Leukemia was by far the most devastating days of our lives and it was the hardest thing to tell her she is so sick. The next hardest thing to tell Lilly was that she was going to loose her Long beautiful hair. Something she has treasured since she could talk. It was like taking a part of her away. Even before she lost her hair she said "I don't want anyone to look at me" and after she said "Dad, I don't look pretty anymore". Talk about tearing your heart out with a spoon. I told her "Lilly, You are the most beautiful flower I know". So as you know I am supporting her in this fight and will keep my head shaved see she can stand proud and be the Baldilocks she is. Granted Like I told her "Your hair will grow back. Mine may not", but I'm okay with that. I'm now so impressed with her and her resilient attitude towards her hair loss. Sure, it's been hard and she's mentioned that she misses her hair but, she knows it's okay and that things will get better. She is also excited to get her own wig made from her own hair. It's in China being made and should be on it's way home soon.
That being said, I'm glad Tiffany found this video that takes place in Brasil and the support the country is giving to help support the special children that are fighting for their lives. I love that so many cartoons are willing to show these kids with cancer and those that are healthy it's okay to be bald. I know there have been times when kids and adults stare at Lilly and won't talk to her because she's different and has a no hair. But, with the right information those same kids will come over and play.
Thanks to all our Brasileiro friends. We're so blessed to know all of you.
Wednesday, April 23, 2014
Once Upon A Time... There was a bear that was very loved. It belonged to the mother of the household, and she eventually gave it to her daughter Princess Lilly. His name was Freddy Bear. Lilly loved that bear even more than her mother loved it, and it became a huge comfort to her - especially when Lilly got really sick. Freddy Bear was always right by Lilly... For every surgery, every back poke, every port access. He went everywhere!
Freddy Bear is in every picture here. He may not be the center of the picture, but he's in the background. Freddy has always been there for Lilly.
One night, Lilly had to stay at the hospital because her mouth was bleeding really bad. All night long her Mommy, Daddy, and the nurse had to keep changing her bedding because of all the blood.
That's when Freddy got lost. Maybe when we were cleaning up the soiled bedding we picked up Freddy Bear too! Freddy got thrown into the central laundry!!! Lilly was beyond devastated. We didn't notice Freddy was missing until the next morning. Lilly told her nurse that she wanted to stay in the hospital until Freddy was found. That's huge for Lilly because she hates hates hates staying in the hospital. It was so sad. She was heartbroken!!
For the next two or three days all Lilly did was cry. It was like a death to her. She was mourning the loss of her Freddy Bear and it broke our hearts to see her so sad. We keep trying to find Freddy Bear, but we still haven't had any luck. It's a good thing there is a place called Amazon... Lilly's mom got online and found a new Freddy Bear. The exact same bear - just newer. It was ordered and we very patiently waited for him to come.
The day before Easter, we were admitted again for a fever and Lilly was bummed she had to stay overnight. Luckily, there was a very special package that came for Lilly that day. She opened it and began sobbing tears of JOY to have her beloved Freddy Bear back! It brought tears to our eyes to see the reunion they had! Freddy Bear has been there through so many hard things - and we are so glad to have Freddy Bear back. We are still waiting to hear back from the hospital to see if the original Freddy Bear will be found, but for now, we are so grateful we have a replacement that is just as special to Princess Lilly!
...And they lived Happily Ever After!
Monday, April 21, 2014
When we found out we were being admitted on Saturday for Lilly's fever, she was so bummed. We had plans for Easter weekend and Lilly was looking forward to it so much! We tried to make the best of it so Easter was brought to Lilly.
Holly is one of Lilly's favorite techs in the ICS unit. Lilly was so happy to see her this weekend - it's been a while. Holly has always been so sweet with Lilly and goes out of her way to make Lilly happy. When we were first diagnosed, she would come play games with Lilly so I could hurry and sneak out and go to the bathroom - Lilly still doesn't like me to leave her side, especially when we are at the hospital.
We were planning on coloring eggs at Grandma Alldredge's house, but since that wasn't an option anymore, the eggs were brought to Lilly! Thanks Mills girls and Grandma for coming and making Lilly's day a little better!
Happy Easter! Lilly was thrilled when we found out we were going home on Easter Morning. Hooray! However, we were planning on sneaking into sacrament meeting so Lilly could play the piano with my Dad for the Easter Program, but that didn't work out. :( We'll just have to try another time.
Lori came to visit! (Jay's 3rd cousin, I think.) She was up at Primary's visiting her best buddy Ethan and tried to find us, but we had already been discharged. She went out of her way to come to our house and visit for a little bit. She gave Lilly and Em these beautiful dolls - it made Lilly feel very special! Thank you Lori for always being so kind and loving to our family. We love you so so much!
Such posers! I love this picture so much! Don't know what I would do without my two girlies! They both had fun finding eggs in Grandma Grandma Wilkinson's backyard. I'm glad there was good weather to enjoy. We needed it.
Family Easter Picture 2014. What a difference from last year! So much has changed for our family. It was a really hard day for all of us yesterday. We tried to make things as "normal" as possible, but it just made me realize how different our lives are right now. Oh how I wish things could go back to how they used to be... without cancer running our lives. I know I need to be grateful for the blessings that I do have, and I am, but some days it's hard to look for the silver lining. I love my family more than anything -
I just wish cancer was not a part of it.
Cute pictures of Em with Grandma and Grandpa. :) I am so glad we have Emery in our family. She is our light right now and we all really need that.
I am grateful for my Savior Jesus Christ. For all that He has done for me and my family. I am grateful for the Atonement and for the sacrifice He made on my behalf. He suffered. He died. He is risen!! He lives!! I showed Lilly an Easter video of the Savior and she hid her head and started to cry. I asked her what was wrong and she said, "When is Jesus coming again? I miss him so much!!" I asked her what she would do when she sees Him again and she said, "Give him the BIGGEST hug!" I am so grateful Lilly knows who her Savior is. And I know He is helping her along the way through this journey.
Saturday, April 19, 2014
So, Lilly was admitted AGAIN! Tiffany noticed Lilly had a fever this morning at around 4:30 of 101.7. Which means it's straight to Primary's ED (Emergency Department). They've really struggled at the ED to access her port unlike the Clinic which is fast and easy. The nurse couldn't get it connected and finally had to remove it so, we requested that they send down a nurse from the ICS unit. So, Sarah, one of her FAVORITE nurses came and accessed her with little problems. Her fever dropped shortly after our arrival which is great. Once we finally got her numbers back we were informed that given her history they want to watch her closely. They say if things go well that we can possibly go home tomorrow morning. One thing that is very nice is that they are giving Lilly and Emery Easter baskets. Another blessing is that Lilly has such high spirits. Her nurse Amber gave her some bunny ears and she's been hopping around the room Like a little bunny making all the nurses laugh as they watch her from the door window. She sure has a resilient attitude!
Tuesday, April 15, 2014
When Lilly was first diagnosed, we were told that she had the "good kind" of Leukemia to have, and that we would be out-patient and we would get into a routine and come once a week - just like going to the doctors office once a week. Easy peasy lemon squeezy... YEAH RIGHT! We have yet to find that routine. We went into clinic today hoping for a very normal and uneventful visit. We were planning on getting her chemo, going to the RTU for a spinal tap, and then heading home with no issues. Why can't we find a routine? It sounds easy enough, right? Lilly's oncologists were still talking about her situation with how she bled so much over the weekend. So many of the doctors and nurses said they had never seen somebody bleed like that! They decided to be cautious (which I'm grateful) and do a blood clotting panel to check and see if Lilly was lacking anything that wouldn't allow her blood to clot properly. Because she was scheduled for a spinal tap, they wanted to make sure to prevent any issues from happening if there was something wrong. Again, I'm grateful they are taking the necessary precautions for Lilly. They filled 15 vials of blood. Holy cow that's a lot! Lilly was a trooper. They had to take blood from her arm and not her port because they didn't want any of the medications she receives into her port to interfere with the test. And then we got to wait for a while... Her tests all came back good. There was still one test pending when we left, but they foresee that to be good as well. She did get one of her chemos today, which was nice. One less thing to do tomorrow. So, now we get to go back to the hospital tomorrow morning for her spinal tap and then we heard that we get to start two shots in the leg tomorrow and two more on Friday because of her previous allergic reaction to the PEG-asparaginase. We haven't told her about the shots yet. She hates shots more than just about anything. Please continue to pray for our Lilly. I feel so bad for her. Cancer has taken over our lives and I hate it.
Saturday, April 12, 2014
Yep. We're still here at the hospital. Lilly is doing much better. No more bleeding from her mouth. Hallelujah! We had the option to go home last night but I just felt like we should stay - just to make sure all is well and that we had no further issues. I'm glad we stayed. She needs another platelet transfusion this morning before we head home. That's 4 platelet, 2 blood, and 2 plasma transfusions in 2 DAYS!! That is so much!
Yesterday was "Harry Potter Day" on the third floor of the hospital. Lilly's ANC (Absolute Nutrofil Count) was high enough that she was able to enjoy a few activities and get out of her room for about an hour.
Even though you can't see her face, you can still tell she was smiling. :) I'm glad she had a happy day after a hard day. She deserved it!!
Lilly was so glad that Emery came to visit her in the hospital yesterday. The night before when we were up all night with a bleeding mouth, Lilly was really missing Em. She said, "Mom, do you know what I wish I had in my suitcase to make me happy??? My BABY SISTER!" I am so grateful for the bond that they share. They love each other so so much! It reminds me of that quote, "If I didn't have you as my sister, I would choose you as my friend." They are best friends!
Friday, April 11, 2014
Needless to say it was a rough night but, we're sure glad we decided to stay the night at the hospital. Lilly received a unit of plasma and red blood cells plus some meds to help coagulate her blood. Lilly continued to spit up blood from her gums, tongue and cheeks as shown in the pics earlier. She wasn't able to get much sleep because about every five to ten minutes she would spit or rinse and spit. There was a period when she (and us) actually fell asleep for about 45min but, when the nurse came in to check on her found Lilly sleeping in a pool of blood. Scary, I know! It's so hard to watch her be in pain and she her bleeding so much. I'm just so grateful for all the blood donors that have helped in keeping my Lilly in better health than what she could have been.
Finally, after a night of terror she's started to heal and feel better. So, thanks to all those that have prayed on her behalf, we know they have been heard. They checked her numbers and will be giving her more plasma, platelets, and red blood cells. It also sounds like they intend on watching her till tomorrow unless there's a great improvement.
Thursday, April 10, 2014
Lilly had a CBC done today to check her levels because she was so low on Tuesday. We were planning on getting the test done today and going in tomorrow. But, they called us this afternoon and asked us to come right in again. Her platelet level was 5 which is extremely low. This morning her gums started bleeding again so I figured she needed platelets. Well, her gums and tongue haven't stopped bleeding and we are now admitted!! Can't she catch a beak? I feel so bad for her. She's miserable. Her mouth is constantly full of blood. They have her on some meds to help with clotting and will get it every 6 hours until she's not bleeding anymore. Plus, she's scheduled to get more platelets, more blood, and fresh frozen plasma- which is supposed to help with clotting as well. And to top it off, she has a fever. My poor Lilly. It breaks my heart to see her like this. She's so sick to her stomach from swallowing all that blood. Say an extra prayer for Lilly... I have a feeling it's going to be a long night.
Tuesday, April 8, 2014
So, after the spinal tap it was up to get her long round of chemo (PEG-Asparaginase). She unfortunately had an allergic reaction to the chemo. She started coughing, complaining about her stomach hurting, then she began violently throwing up, and the whites of her eyes turned pinkish. They quickly stopped the chemo infusion and gave her Benadryl through her port which made her quickly fall asleep. They are currently watching her to ensure the reactions don't flair up again, since this chemo is long lasting. They now gave her hydrocortisone to help with the reaction. We've been here since 7:30 this morning and it sounds like we'll be here for a while longer. Needless to say it's been a long day.
Hi, my name is Millie. Thanks for helping Lilly find a great name for me. I will be attending school for Lilly while she is getting better. I think the next time you see me I'll have bows on my ears and a new outfit ready to go to school. I can't wait to meet new friends and do new things for Lilly at school. I wonder what fun things her teacher and classmates will have for me to do?
The final results of the poll. It's pretty clear that Millie is the perfect fit
|Lilly (Purity and beauty)||6|
|Einstein (One Stone)||4|
|Bernadette (brave bear)||14|
|Millie (gentle strength)||35|
Thanks again for all those that helped in naming Lilly's Monkey.