It’s official. We have been home a year from Tanzania. We have been dealing with Leukemia for one year. Our lives have been upside for one year. And the good news….. We have survived.
I can still remember last valentines day like it was yesterday. I can still feel what my body felt like when the Dr. came in and told us that Lola did indeed have cancer. I was in the room. I was awake. I was listening, but it was like I was somewhere else and my body was literally numb. There was a whole team of people in our room. A dr, nurses, a random med student who kept trying to talk to me. And I literally heard nothing once it was stated that Lola had Leukemia. I could see people’s mouth moving like they were talking, but there was no sound. It was like they were all on mute. It was awful. It was beyond awful.
Today marks one year since it began. Last valentines day I said to matt that next year on valentines we were taking the kids to disney world. Well… we did that a couple months ago, so instead we took the girls overnight to a hotel to celebrate our family, Lola’s life, and that we have survived. We are SO THANKFUL to have made it this far!! Each year we make it is really a little celebration. Really every day that Lola doesn’t relapse deserves celebration… but I think we would get sick of sleeping in hotels to celebrate 
We need to make it 4 more years and then we will be throwing a big ‘ol party and leaving cancer in the dust. Lola still has another year and a half of treatment, and then a number of years of testing to make sure the leukemia doesn’t sneak back and once she has made it 5 yrs we are pretty much in the clear.
One incredibly scary thing that is going on right now is that there is a huge shortage of one of the drugs that Lola needs. I have been hearing about kids not able to get there chemo, or needing to take a lower dose because of the shortage. This is a medication that they inject into Lola’s spine to make sure the leukemia doesn’t get into her spine and brain. Pretty serious stuff and a very necessary part of her treatment. Without this drug survival rates for kids with leukemia are decreased to a heartbreaking percentage. I have read a lot of different stats on the shortage, but basically everything says that if the gov’t doesn’t step in, there will be no more of this drug possibly for the rest of the year. It sounds like the drug could be totally gone in a matter of weeks. Lola is scheduled for her next dose of this drug in March. Please pray that things change by then and more of this life saving medication is made and that Lola can continue her treatment as it is needed. If there shortage effects Lola, I don’t know what I will do. We would rather not have to go searching the international black market for a medication for our daughter…. but we certainly would consider it, no matter the cost. Follow this LINK to send a letter to your senator about the issue that the Leukemia and Lymphoma society has provided. I never know if letters like this can really make a difference or not… but it sure is worth a try.
And on a much lighter note…. Did you hear the news?? I’m officially totally old. I turned 30 last week!!! I was 30 weeks pregnant on my 30th birthday. And I ate 30 pieces of cake to celebrate. Ok… maybe not, but that would make it sounds a lot cooler. or not. My day was great. The girls decorated the house with gobs of streamers taped to the walls, Matt brought me home indian food (my favorite!!) and I laid in bed eating my all time favorite candy- cinnamon hearts. A perfect birthday in my opinion 
Lola was back into clinic on Friday to get her blood counts checked. She has been doing better with her tummy, but still not totally great. And her counts were low, so she had to be pulled off her chemo for a week to try to get the counts back up again. It always makes me a little nervous when she gets pulled off her chemo. This is only the 2nd time this has happened to her, and I hope it doesn’t happen again. We have to go back later this week to check the counts again, and hopefully she can start back on her chemo. We’re just praying that she doesn’t get sick this week with her low counts. We really should be living in a total bubble again…. but sometimes we just can’t do that. Lola has to give up SO much stuff because of cancer, that sometimes we just break the rules and go party at a hotel and pray that the 4 gallons of hand sanitizer I soak our family in is enough to keep her healthy.
Sorry I have no pictures to post today 
I had good intentions of putting some up… but I am just to tired to do it now. I’ll be posting some soon though to show off Lola’s beautiful head of hair that is growing in!! She looks somewhat like a teenage boy who just doesn’t want to comb his hair. I find it to be cute. (On lola… not on teenage boys…)
EDITED TO ADD: here is a great article from Cure Search (the organization the funds Children’s Cancer research that I did the Ultimate Hike with) about how you can help with the drug shortage. Check it out, and help us fix this problem!! CLICK HERE
And HERE is the link to our post a year ago when Lola was diagnosed for those of you who are new to the blog.
and these are pics I took today!!
We took cupboards down and added open shelves to put my colorful dishes on, did a crazy lot of painting, refinished the floor to be a fabulous black, got a new light fixture and a new kitchen faucet.
Well. Theres the kitchen. You are all invited over for dinner tonight. Hopefully none of you know where I live since I only have 2 lbs of meat….. 
6 years ago when the Dr. put you into my arms I fell into love with you in a way I never thought possible. 
You were PERFECT. Your big beautiful eyes looked up at me and I knew what it meant to be a parent. I instantly knew the love that parents have for their children. I didn’t worry about what the future had in store for you, for I knew that God had given you to me to care for, and that you would be taken care of forever.
We had been gone for 2 weeks to pick up Kia and we missed you so much!!! When we got to the airport you ran up to us, looked at your new sister and said ‘Can I pet her?’ You became such a good big sister, and it didn’t take long for you two to become best friends. You have a truly caring spirit, not just for your family but for ALL people. You really are such a sweet, sweet little girl.
I just kept thinking about how you were to sweet of a little girl to have to go through that. But you know what Lola?? You have survived this past year and made it to another birthday!! You have done SO good, and I am SO proud of you!! I know that it has been hard, and I know that you haven’t been able to play as much this past year, and I know that you have a lot of days when you don’t feel good, but you are AMAZING!!! When we were at clinic last week and it was time for you to get poked you we’re so strong!! And when you asked to have a minute before the poke, and you then prayed out loud that God would make it not hurt, and you thanked God for the sunshine that day and for all the people at the hospital, I just thought about how strong of a little girl you are. I have learned so much from you, so much about happiness, and faith in the Lord. I wish you didn’t have to go through this, but I am thankful that you are still here on your 6th birthday.
We hiked for over 3 hours in the pitch black and then the sun slowly started to peek out exposing just some amazing beauty around us. I hiked 16 miles along and then had to stop (I knew ahead of time that I wasn’t going to be able to do the full 30) due to the reason pictured to the right. yup. its true.
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