I’m a couple weeks late with my announcement, but I am happy to report that we have a beautiful new baby girl!!!  Sweet Pearl was born March 29, 2.5 weeks early!!!! I had gone to the Dr for an appt, where I had an ultrasound and found out that I only had half the amniotic fluid that I should have, so that evening I had an emergency induction to get my sweet babe outta there!!   Thankfully my hubby was at the Dr’s appt with me, as it became a complete circus act after I found out we we’re going to have the baby!!   Our crazy life doesn’t really allow us the time to be prepared for anything, so having Pearl come 2 weeks early meant we were REALLY not prepared. I hadn’t even bought a pack of diapers, or set up the crib, or well…. anything.

At the hospital.

When I left my Dr’s office I was told that the hospital would call me as soon as a bed opened up.  My dr thought it could be midnight or later. So…  I had plans of dropping the girls off at a babysitter, going out to eat, washing my kitchen floor (yes… that’s something I wanted to do).  Well… at 4:30 (30 minutes after I got home) I got a call to be to the hospital at 6.  Now, keep in mind that I live 45 minutes away form the hospital, and I needed to pack for myself and the girls. I basically just decided there was no chance of me being prepared and off we went. I didn’t even bring one baby item with me to the hospital. yup. Thats my life. I had a super easy labor and delivery, just like I did with Lola and I recovered quickly and even busted out of the hospital the day after Pearl was born.  They said ‘You will be discharged on Sunday.’ I said, ‘Nope. I’m leaving tomorrow (which was that Friday).’ We are becoming pro’s at escaping hospitals.

We’re also lucky Pearl was a girl, because on the drive to the hospital Matt and I were trying to come up with a boy name. We had decided on Pearl a few weeks prior. Pearl’s full name is Pearl Imani Hope. Imani is Swahili for Faith, and I just really wanted Hope to be in her name, as I feel like that’s what she is. In the midst of all this craziness, this time of pain for Lola, and stress for Matt and I, she gives us Hope. This beautiful little darling has done wonders for us already, and she is only 2.5 weeks old.

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?

We are NOT having fun at this point....

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.

Thank goodness for a good daddy.

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.

In sedation, finally got the IV in. Still not having fun....

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.

Sweet girl after procedure

 

Recovering.

yummy honey- soon to be syrup

Have you ever looked at the ingredients on a bottle of syrup? There is a lot of junk in there. And… did you know it is totally easy to make your own syrup?? It still has a boat load of sugar in it, but at least nothing extra! And it is tasty!! I made some this afternoon to go with our pancakes (yeah thats right… we eat pancakes for lunch).

The girls and I made it a while ago to Fredrick Meijer Gardens to see the butterflies. I think my kids are cuter than butterflies, so I tend to only take their pictures, and pictures of nothing else…..

When bike riding, always wear a helmet. And wings. Both critical.

Last year when we moved out to the country one of the first things we did was to build a chicken coop (It’s still not done… but it’s good enough;) ). We got a few chickens from the family we lived with last year, and I also got a few from craigslist. We’ve had a few randomly and a few not so randomly die over the winter and we’re down to 7 hens now. Time to get our chicken numbers back up so that we can have lots and lots of yummy eggs to share. We bought 7 more chicks yesterday, and plan to get more in the next few weeks. My girls LOVE the chicks. They have been having lots and lots of fun playing with them in their big playmobil house, and because it is so hilarious to see a tiny chick sitting on a tiny chair at a tiny kitchen table, I just let them do it. I seriously find it hilarious. HI>LAR>IOUS. I need to get out more….. The end of march we have 25 day old meat chicks (yum yum) coming. The girls may need to invest in a larger play house. Or perhaps a play school?? So this leads to the question… are we real country people yet?? I don’t think so.

Speaking of Country….. some of you may have read a tiny bit here and there on facebook about the adventures of big dog (aka our boxer Penelope). I’m pretty sure this story verifies that we are NOT real country people. One day I’m home with the girls as usual, and I let rat dog and big dog out to do their thing. I go to get big dog back in and she has something very suspicious in her mouth.

Bad dog.

Turns out to be a leg… yup a leg. from heaven only knows what. I find it to be very gross so naturally I do what anyone would do when the remains of a leg shows up on their porch. I text my husband a picture of it, and then say a little prayer that no one comes to my front door and sees the leg. We’ll…. the UPS man did indeed come that day and set a nice package right next to the leg. Oh well…
So, a few days later i’m in my kitchen and big dog is out on the deck. I look out and notice that she has something once again in her mouth. Its a foot. A fully intact foot complete with fur/claws etc. GROSS!!! SO I again freak out and text my husband to tell him I would like to move to an apartment in the city. I call and make big dog an appt. to get a dog bath. No stinky death dog is going to be hanging out in my house!! The big man of the house gets home from work, takes care of the foot and life goes on.
And then…. Thank goodness this is on a saturday and my husband is home. I let death dog out, and all the sudden she’s gone. I don’t know where she is and she isn’t coming when I call. A few minutes later shes back. And GUESS what she has?!! The entire remains (minus a foot and a leg) of a half decayed raccoon!!! SUPER GROSS!!! Husband takes care of it and we both say- thank goodness. I think that is everything.

But WAIT!!! It’s not over. A few days later the dog is out and guess what she brings to the deck this time?!! A small animal rib cage. And the next day?!! A giant vertebrae from heaven only knows what!!! So… ever since then poor death dog has been on a chain and she is not able to enjoy running free on our land in the country. But really… let me ask you this. Who has this happen?? My life is so STRANGE!!!

These are a few older pics from February. We went away for a night to celebrate making it one year from Lola diagnosis. And check out all Lola’s hair!!

I wanted to let everyone know that I am offering a limited number of Life Thread dresses/tops/bloomers for sale.  Check out the life threads page for more info!!

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.

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!!

I’ve been waiting until our house was nice and clean to get pictures of all the rooms, and well…. they just never seem to be clean at the same time. So, i’m just going to start with pictures of the kitchen, and we’ll go from there. And we’re still not done, but we are done enough for now.  I really LOVE our new kitchen and feel a little like I could run a cooking show out of it. Well, if I cooked I could.  ;) I am pretty spoiled to have some fabulous help picking things out for our house.  If you are ever doing some remodeling or redecorating check out Mindi Freng Designs.  She has been a HUGE help in finding fun stuff for the house (she even had my fab new orange table legs just chillen in her garage waiting for a new home!!)  and with helping me to know where to put things that I already owned and make it look like it belongs there, not like I just took it out of storage and stuck it somewhere.  The black cabinet in my kitchen used to be in my photography studio, but with a new paint job it was ready for the kitchen!! Check out Mindi’s website or facebook page to see some more of her amazing work!!

This is a picture that I posted back in August of the work we had done up to that point.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.

Oh… and who are these cute children in jammies at 3pm??  Why they are my children doing their school work of course. Clothes are totally overrated.

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…..

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,  Mommyb1 b2 b3 b4 b5 b6 b8 b10 b11 b12 b13 b14 b9

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.

Here we are ready to go at 4am!!!

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!!