Category Archives: Lola’s Life

Clinic.

03.20.12

Well… Lola had a clinic appt bright and early this morning.  Every 3 months she has a bigger appt, where she gets sedated and has a spinal tap, chemo put into her spine, and also receives her normal monthly IV chemo. Thankfully Matt was able to take the day off today to come and hang out with us because it was seriously an awful day.  Everything is good with lola, her blood counts have improved enough that they are able to raise her chemo dose a bit (she is at a partial dose because of low counts), and everything else looked good as well. However….  these days are always just straight up draining for both Lola and myself.

There is really no such thing as a ‘great’ clinic day. There is one that goes ok, and there is one that is not good. Today was the ‘not good’ one. It does not matter how many hundreds of times Lola has been poked, it is hard for her everytime. She works really hard to be strong and to do her best, but really…. what 6 year old like a giant needle being poked into their arm?

[caption id="attachment_1162" align="alignleft" width="300" caption="We are NOT having fun at this point...."][/caption]

We have a pretty good system down for lola’s normal clinic days where she gets a finger poke for her blood test, and then when she gets her chemo they just stick a little needle in, give the chemo, and take the needle out. But today she needed an IV for when she went down to sedation. They could NOT get the IV in. It took 5 pokes for the poor girl and it was downright awful.

[caption id="attachment_1163" align="alignright" width="300" caption="Thank goodness for a good daddy."][/caption]

I was glad Matt was along to help out with everything. Lola loves her daddy so very much, and is always happy when he can join us at clinic.  After 4 pokes in clinic we decided to give Lola a bit of a break. We went down to sedation, and the team down there was able to get a line started. Thank goodness.

[caption id="attachment_1164" align="alignleft" width="300" caption="In sedation, finally got the IV in. Still not having fun...."][/caption]

 

This all just reminded me of when Lola had her port and it never worked and every clinic was just this awful every time. Thank goodness thats not the case anymore, and hopefully Lola does OK next time and is able to forget about how awful this time was.  I hate that my sweet girl has to go through this, and that she has already spent over a year dealing with it all.

[caption id="attachment_1165" align="alignleft" width="300" caption="Sweet girl after procedure"][/caption]

 

[caption id="attachment_1161" align="alignnone" width="300" caption="Recovering."][/caption]

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The dust has settled.

02.14.12

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.

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Get out of my bed.

01.29.12

Have you heard that Lola got a dog for christmas??   It is the most wonderful/awful little dog ever. Its a tiny 4lb 2yr old yorkie that lets lola haul it all over the house, and put it in party dresses and force it to lay next to her any time she is tired, including all night long.  It is wonderful because Lola LOVES it so much. It helps to keep her happy, it gives her a ‘purpose’ when she isn’t feeling well and can’t do much else but pet the dog and tell it how cute it is. This past friday when Lola had clinic we scheduled the dog to go to the vet the same day to get fixed (We sure don’t need any puppies around here…) and to have some teeth pulled (really??  My dog has a dental bill?!! ;)  ). Lola thought it was so great that they were both going to the hospital on the same day. They both needed medicine, and they both had to get ‘pokes’ And lola made sure to tell every person we came in contact with that day that both her and the dog were going through medical procedures. The dog is awful because it seems to have bonded to me. And I am not bonded to it. I want it to be Lola’s dog, and the dog wants to follow my every move and snuggle up close breathing its hot stinky breath on me any time I take a break. If that dog catches me in bed, it is sure to jump on in, snuggle down under the covers and give me a big stinky lick on the face. gross. So. Thats the story on Lola’s new dog the famous Ms. Roxy Fur. (she was going to name it fur…. thankfully she decided to go with that for its middle name. )

Let’s see. What else is going on. Lola has been doing fairly well. Her spirits have been high, and she is just all around happy. Last month (december) she had gained enough weight that at clinic they raised her doses of chemo. That seems to have been more than her little body can handle and she is now dealing with a lot of nausea and vomiting. She eats and like 4 minutes later will throw up and then just continue on with her day.  While so far all of these ‘incidents’ have been at home, I am slightly terrified to leave the house with her for fear of puke. I just make sure to pack some plastic bags and extra clothes every time it seems we may be at risk for an explosion.  This is also effecting her eating habits, and it has become nearly impossible to get her to eat. Nothing sounds good, and it is so hard for her to eat even a little bit. When we were at clinic friday she had lost weight, but not enough to need to lower her chemo doses back down. Her PA at clinic didn’t have any real great ideas for how to deal with this, so we are basically going to give it another month. She is now on some high doses of chemo, and high doses of meds to deal with the side effects of the chemo.  Its just so frustrating knowing she needs the chemo, but that the chemo is affecting her negatively.  This whole situation makes life a bit more difficult.

We went to church in town today, so decided to run to the mall while we were there. Lola still has some leg/ankle weakness from last year when she stopped walking, and I could tell that the cute little leather boots I had bought her were just not giving her enough support so I really needed to find her a new, better pair. It was lunch time so we decided to grab a bite to eat at the food court.  Lola doesn’t want anything to eat, and after trying to figure out what to get her for about 15 minutes I get frustrated and tell her to pick something, or we’re going to go home.  She finally decides on chicken tenders and chocolate milk. We get our food, and she drinks about half her milk, says her stomach hurts and that she can’t eat anything else. I become slightly afraid that she is going to throw up in the food court (which she doesn’t).  Matt becomes slightly suspicious that she is just saying her stomach hurts so she doesn’t have to eat.  After some discussion it is decided that her stomach does indeed hurt. We decided just to suck it up and try to find a pair of boots since we are at the mall and probably won’t be back for a couple of weeks. We make it to store #1. No good boots. on to store #2.  They have a cute pair of Keen boots. They looks supportive, cute, comfy and they are on sale. perfect. Oh wait…. they don’t have Lola’s size. On to store #3 (stride rite). They have about the same options as store one, but we decide they are an improvement over what she has now, and they are on sale so we just snag a pair and start to get the heck out of the mall. Lola suddenly has to go to the bathroom and the events that occur in the bathroom prove that her stomach did indeed hurt. I’ll spare you the details of that…..

That is a pretty good description of our lives right now. Lola is happy overall, feels good most of the time, but we just never know when these stomach issues might creep up and cause trouble. Hopefully we can get things under control with this so that Lola can go on being happy  and feeling good all the time!!

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To my darling Lola,

12.31.11

Dearest Lola,

Today is such a special day. Birthdays are always wonderful, but this is the most celebrated birthday you have ever had. You have had such a tough year, and you are such a tough little girl.

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.

The next 5 years we’re so fun!!  You were such an amazing little girl. You started to crawl  around 6 months, and then you started to walk around 9 months and then you started to talk!!!  And you haven’t stopped talking since!  I have a video of you just past your 1st birthday saying ‘I’m 13 months old.’   You we’re and still are a brilliant child.

Right before your 2nd birthday we brought home your baby sister form Ethiopia. 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.

We did so many fun things together as a family. Our lives we’re nearly perfect. Last year you even got to celebrate your 5th birthday in Africa!!! You loved living in Tanzania. Everyday you would play outside in the warm sunlight  running around and making up some pretend game. It was so fun to be a family in Tanzania. Life was easier, the pace was slower, and we got to spend a lot more time together as a family!!!  There was no hustle and bustle like there is here in the US. You LOVED it there.

Shortly after your 5th birthday you started to get sick, and we ended up coming back to Michigan. We found out that you had Leukemia and I felt like the world had stopped spinning. 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.

My dear Lola, we have another hard year in front of us, but I KNOW we can do it!!!  There will be a lot of hard days, but there will be even more good days. Days where you smile and run and play. Days where our family is together and days where I feed you pancakes for breakfast, lunch and dinner….. just like you like. :)  I love you with all my heart and then some. Keep smiling and loving God. Happy 6th birthday!!!

Love always,  Mommy

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When 16 miles is just far enough.

10.31.11

WOW!!!   I can not believe it has been over a month since I posted to the blog. I am considering getting rid of the blog because A- I barely post to it and B- I’m not sure if anyone really reads it??  Hello?? Is anybody out there reading this?? I know most people probably find out whats going on in our life through facebook… so maybe the blog is not necessary??

Moving on. Last time I posted I was asking for prayers about Lola’s treatment. We were really hoping and praying that Lola would be put into a certain treatment and as it turns out… she was not put into that one. I took the news pretty hard and needed some time to adjust to the thought of what this was going to mean for our lives for the next 2 years. Lola will be on a TON of medication for the next two years, and every four weeks she will be on one chemo for 5 days that really effects her. It takes almost a week for it to wear off, so that leaves us with about 2 rough weeks out of ever 4 weeks. Not exactly something we were hoping for….  But at the same time we fully believe that God put Lola into the treatment that she needs, and if this is what she needs to stay alive then we will do it, and we will do our best to do it with a smile on our face.  Lola did have her port removed about a month ago, and we are just thrilled with that. She is SO HAPPY to have it gone.  Lola goes back to clinic on friday for IV chemo and she will also be starting up on that nasty chemo again , so please pray for Lola as it will be a couple rough weeks.

Good news about Lola- She made a change in her make a wish. The mini horse was getting a bit complicated and a vacation was sounding pretty good so she decided to go to Disney instead!!!  We will be in the market for a friendly mini horse in the spring though, so if you happen to have one just lying around let us know ;)   So… in December we will be going to Disney and we are pumped!!!!   I’m crazy excited and have been keeping myself busy planning out our amazing trip. I have never in my life felt the need for a vacation like I do now. It will be wonderful to just escape for a week with my family and have some fun and not have to worry about all the junk that we have to worry about all the time.

Next up… Ultimate hike!!!  The Hike was this past weekend and it was AMAZING!!!  The trail was slightly horrid. It was full of HUGE hills and a really tough trail. We had to get up at 2am to get to the trail and started hiking at 4 am. It was pitch black and I was pretty sure there was either a hungry bear or a murderer waiting for us in the dark. Luckily there wasn’t.  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.

5 people from team Lola continued on for the full 30!!!  I can not even tell you how much it means to me to have so many people doing something as crazy as this to help find a cure for childrens cancer. There were even a couple people that joined team Lola that I had never met before!!!  AMAZING!!   I worked hard to make it 16 miles. Well… the 30 mile hikers worked like crazy. It would be one thing if the trail was flat and easy. But it was not. Basically you were always either going up or down a huge hill. Team Lola still needs to raise a bit more money, so if you are willing to sacrifice a small amount to help we would appreciate it!! CLICK HERE to make a donation.

[caption id="attachment_1050" align="aligncenter" width="500" caption="Here we are ready to go at 4am!!! "][/caption]

Well. I think that’s about all I have for now. I need to get my little bunny and poodle ready to go for the festivities of the night!!

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