Monthly Archives: September 2011

What is to come??

I went to clinic with Lola last week armed with a list of questions that would make any one nauseous.  Every now and then I do that, I just like to make sure everyone knows that I am a completely crazy mom who will do whatever it takes for my child. So…  as a result of my crazy mom moment that day Lola is now scheduled for Surgery next week (Oct 7) to have her port-a-cath removed. This is BIG for Lola at this point. The port is meant to be a helpful piece of medical equipment, that helps both the medical staff and the child, making it easier on them so that they don’t always need to have IV’s in their arms etc. But….   Lola’s port went a bit hay wire a few months ago and it started not working as it was supposed to and she kept having to have dye studies done on it, and it would be difficult to get blood draws, and her poor nurse would really have to wiggle the needle around in Lola to get things to work. It was AWFUL. As a result of that, even though the port has been fine lately Lola has some HUGE issues with it. She greatly prefers to be poked in the arm over her port and she is really just scared of having her port accessed. She really wants it gone. So…  for the sake of Lola, we are glad she is finally reaching a point in her treatment where she does not need the port and it will soon be gone!!

As for Lola’s treatment…..  She is now ready to move into the section of treatment called ‘maintenance.’ She will be on Maintenance for about 2 years. Lola is currently on a trial, and prior to beginning maintenance she will be randomized into 1 of 4 different treatment options. Here is where you all come in. We REALLY need your prayers for this. This is another time where we are completely helpless in our daughters care. We have to rely on a computer that will randomly put her into a treatment plan. But…  I think we all know our amazing father God is in the ultimate control of this.  Of the 4 treatment options, two of them Lola will have to take a steroid chemo for one week every 4 weeks. The other 2 options she will need the steroid chemo for one week ever 12 weeks. Now. Here’s the thing about the steroid. It ruins Lola’s life. It makes her so depressed. Back at the beginning of our adventure with Leukemia it was the steroid that caused Lola to stop talking. When she is on it is a struggle for our whole family. Lola will find a patch of sunlight on the floor, and lay on the floor all day long under a blanket doing nothing. It is nearly impossible for me to engage her in anything.  It is awful.  And I do not know that I can endure that for 24 weeks in the next 2 years.

So it is our prayer that God will have Lola placed into whatever arm of the treatment she needs to be in. And it is also our prayer that where she needs to be is in  Arm C or D, where she will have steroids every 12 weeks.  We are asking you to come along side us for the next week in prayer for Lola. We can find out what arm she is in 72 hours before she begins treatment, which puts us at next tuesday. So please pray hard specifically about this until then!! I know that there are people all over the place praying for our family and I can not tell you how much that means to us.

And on to our next ‘issue.’ I have been sick as a dog since friday.  I’m OK being sick… life goes on, BUT Lola CAN NOT get sick.  For one thing, if she gets a fever its an automatic trip to the hospital and….  it is not good if she is sick when she is scheduled for surgery and for her treatment to start. So please also be praying for that. Thankfully I seem to be on the upswing of whatever it is that I have, and I only had a fever for a few hours on saturday. My kids have runny noses, but no other symptoms. Pray that they just stay with runny noses and don’t catch what I have!!!   Thankfully I have the world’s greatest husband who has been playing super dad/house keeper/ food cooker/ take care of Lindsey person. He is home from work today holding down the fort while I am in seclusion in my bedroom for the 3rd day.  Oh…  and if your considering living without a TV I would like to encourage you to think long and hard about what you will do if you ever get sick. I am BORED out of my mind!!!    I thought the ‘no TV’ thing was a great idea…. until this happened!!!  Thankfully Super Matt to the rescue!!  He dug out an old TV and an antenna for me this morning so I could watch the today show and whatever other junk is on during the day :)

Here’s a picture of me. If I had blond hair. And if I wore pig-tails. And if I had a teddy bear. Well…  I guess this really looks nothing like me.

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8 years later…

Wow.  Eight years ago if you had told me that this is where my life would be, I don’t think I would have believed you. BUT…   if someone had told me that this would be my life, and I had a choice to make a decision and NOT marry Matt, so that this would not be the path of my life, I STILL would have married him.

September 12,2003 was an amazing day in my life. 8 years later I STILL have guests from our wedding come up to us and say how fun our wedding was. We were SO excited to be getting married. We were young. (I was just a baby at 21 yrs old!!) We were completely crazy (and still are) and we were in LOVE!!!! I loved matt so much, and the good news is that I still do. I would say that the first 7 years of our marriage were completely ‘normal,’ we had a baby and then another through adoption (maybe adoption isn’t normal to you… but it is to me :)  ) We bought a house, and then another when we needed a bigger home. Matt got a real job, I realized how much I hated having a job so stopped working ;)  I later decided having my own business was more suited to me, and that worked out pretty good. And so on and so forth was our first 7 years.

And then there is this last year. My life in the last year consisted of moving your family across the world, learning a new language and culture, being robbed, having a forest fire invade our yard, and having to put that fire out by hand because there was no ’911,’ (truth be told…  Matt and a couple other guys put the fire out, while I stood in the house deciding what I needed to toss in the car in case the fire engulfed our home.)   living without electricity or clean water, caring for a very sick orphan newborn who only slept 30 minutes at a time and screamed in pain the rest of the time, we were  forced to leave our new home on the other side of the world to come back to the states to find out our daughter has cancer. We realized we had no home, no car, no job, no nothing, to have to rely on others to care and provide for us, we had our very sick child stop talking and stop walking, we bought a new home 5 months later, and moved into our home and realized that EVERYTHING was broken in it. You guys can relate to that right??  No?  anybody??  no. hmmm….  But you know who can relate to all that stuff with me??  My amazing wonderful husband.  If I had not had him along on this crazy life journey with me, I don’t know what I would have done.  Now, I have a huge faith and find great comfort in the Lord, but there are days when the good Lord would use Matt’s amazing patience to just be there for me when i’m freaking out about medications and side effects, and things left in Tanzania and dishwashers that don’t work.  And yes, I am real good at freaken out. Our life is hard. I mean really hard. But together Matt and I have become better people through it all and I really wouldn’t trade it for a normal un-eventful life. I’m sure that you all have issues in your life, struggles that stink. And it is my prayer that not only do you find strength in the Lord to get through those hard days, but also that you have someone that can hold your hand through it all. Some times we just have to reach out for help, but getting through all that ‘stuff’ will be so much better with  someone who cares.

On Anniversary this year is not going to be fun. It won’t be exciting. We will do nothing special. But we will be together, and again I am thankful for that. Lola has a big appt at clinic tomorrow. I’m thankful that Matt is taking the morning off work to help me out with Lola. She has to be sedated in order to have chemo put into her spine. While I have gotten used to her being put under, it is never an easy thing to watch my baby go life-less on the table in the basement of the hospital. And it is never easy to watch her wake up confused, tired and hungry. So I am thankful that matt will be there to help me with our sweet baby girl. Lola will also be getting a number of other Chemos, and they will be upping her doses. The night after clinic is never real fun for Lola. She generally doesn’t feel real great and ends up with bad diarrhea during the night. And I am always so emotionally drained that it takes everything I have to take care of my sweet babe. Clinic days are not fun. So that will be our 8th anniversary. A prime example of what marriage should be. Caring for each other, loving our family, and helping each other when we need it most.  So Matthew, the Love of my life. Here’s to our 9th year. We survived the 8th year so we now know we can get through anything together, and i’m pretty sure it can only go up from here.

Please keep praying for our family, as we continue to survive the best we can. Pray for Lola at clinic in the morning. Pray that her blood counts look good, so she can get the treatment she needs. Pray that as they up the doses of chemo once again that the side effects are minimal. Pray for NO long term side effects for Lola. Did you know that 3 out 5 children with cancer live with long term side effects for the rest of their lives?!!  I’m not real interested in that for Lola. She still has a lot to do with her life. We don’t want side effects slowing her down.  Wanna know something cute about Lola?  Well…  if you said no, I can’t hear you so I’m still going to tell you.

A few nights ago I had tucked the girls in for bed and I was listening them discuss the star they could see out the window, and they decided to ‘wish’ on the star. Lola says the whole star light, start bright  etc…  and do you know what she wished for???   A ‘double blessing of the Holy Spirit.’ My 5 year old. She is 5 yrs old and THAT is what she wishes for!!!  And then last night… stars out again and this time she wished for ‘Grace, Peace and Mercy for people around the world.’  Did I mention that she is 5 yrs old?? This child is AMAZING. God has big plans for this little angle. She is going to take her double blessing and do amazing things.

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Lola’s Razzle dazzle rainbow juice.

LEMONADE!!!!  GET YOUR LEMONADE!!!!!

Oh Lola. My sweet caring little girl. Love that kid. Once I started talking about how I was going to be hiking to raise money for kids with cancer, Lola decided she wanted to help me raise some money, and the best way she could think of was to sell her ‘Razzle Dazzle Rainbow Juice.’ Now… here’s the issue with that. Lola and matt invented this juice, and while I try real hard to stay out of the kitchen while it is being made I have witnessed some of the process and if I do say so myself… it seemed a bit gross. There was a lot of squishing with hands and ringing juice out of cloth into the pitcher. I flat out refused to drink it AND I made matt boil it before he fed it to our children.
The good news is that Lola agreed it would be OK to sell some lemonade as well at the sale… you know… to prevent being sued when people become ill from the unsanitary conditions of razzle dazzle rainbow juice.

So the sale. I don’t have time in my life to plan anything. It is now September and we have still not planned the lemonade sale. I was getting nervous that this was going to have to be a hot chocolate sale. Well… this weekend looks like it might be decent out so we’re are having Lola’s lemonade sale on Saturday. We are also going to be grilling up some tasty hot dogs in hopes of luring in some people who don’t feel like cooking lunch on saturday :) All proceeds from Lola’s lemonade sale will go to Cure Search- childrens cancer research. Because we now live out in the middle of no where….  the sale will be taking place at Lola’s grandmas front yard. Please join us and show Lola your love, and also support a great cause.

  • Saturday September 10. 11:30-1:30
  • 3615 Yellowstone Dr
  • Grandville MI 49418

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