January 16, 2015

Hallelujah!  ARA-C is done and we won't see it again until May!

3 days off of chemo and Lexie is so ready for a break from the puking.

Day hospital on Tuesday for 2 more IV chemo's, moving to new apartment on Wednesday --- 

As of January 21st our new address will be:
3225 Oakley Station Blvd Apt #105
Cincinnati, OH
45209

We are so excited to move, it can't come soon enough! We had another fire alarm last night - so annoying!

Speaking of annoying ... still dealing with logistical issues regarding Mack's growth hormone. It's been 7 months of fighting and I'm so tired of it all. She see's endocrine next month and has another MRI of her liver. Praying the lesions in her liver are healed and undetectable on MRI. Cataract surgery has been scheduled for March.

It's hard to keep it all straight but somehow Gods grace is always sufficient!

9:25 pm - What do ya know... ANOTHER fire alarm! Ugh! Gonna roll the dice on this one! Please let it be Wednesday already!

January 14, 2015

Good day ... Praising God for His hand on Lexie's life.

She has been feeling well today without nausea and vomiting despite more ARA-C.

She's logging in a lot of time on Netflix these days and still keeping up with her school work.

Please continue to pray for healing, protection from infections and side effects of chemo, and a smooth move/transition to our new apartment next week.

Thank you to those who are local and have offered to help. Love you all!

January 13, 2015

Made it back to Cinci yesterday without any problems despite the "iffy" weather.

Lexie's blood counts are on the decline as expected. Clinic was rough ... lots of anticipatory nausea and vomiting. Poor girl, it's hard to see her so sick. Home health will be by to give ara-c the next three mornings. Trying to stay on top of the nausea/vomiting.

I often feel like we're just waiting for the next complication or dose of bad news to hit us. I know I've been conditioned to feel this way after all the trauma we have endured. My mind and body attempts to prepare and protect me from those horrible places so its always at my forebrain, but I'd like to shed those feeling and live without the weight of those haunting memories.

Ever since we moved to our apartment, we've been concerned about the air quality. Lots of weird smells. We had an independent contractor come to the apartment to test for mold and apparently something showed up. We were notified by our complex that the furnace and vents need to be cleaned as well as a treatment applied to the walls. 

Between that and the disruptive children at all hours as well as three fire alarm incidents we've decided to move. I've been paralyzed trying to figure out what to do, but God opened a door today and enabled us to get out of our current lease and into a new apartment about 15 minutes from the hospital. We are most excited to have TWO bathrooms! 

The new place is currently running a special and therefore our rent is exactly the same as our current rent! God is good and continues to faithfully provide for our needs. We will be moving next Wednesday. If anyone in the Cincinnati area would be willing to help us move either Wed or the following weekend please message me, we could use some help. I will post our new address soon!

Thank you Jenny Buddig and Chris Sizer for your generosity and compassionate hearts. We are very touched by your love and concern for our family. Please know we are SO thankful for your willingness to help us during these difficult times. 

Thank you Kara Jacobs, Regina Gratz, Jane Klingenberg, the B+ Foundation and Chemo Angels for all the cards and care packages! 

Also, thank you to whoever sent the Trusting God day by day devotional ... the kids opened the package and I couldn't find a name for the sender, or maybe it was meant to be anonymous, but thank you! It looks awesome!

January 11, 2015, continued

Home makes all things better

January 11, 2015

Sorry for the radio silence - we went AWOL on Friday and have been at home flying under the radar. Haha!

 

We decided to get one more weekend in at home before Lexie's counts plummet.

And we wanted to attend the Robin Straus Invitational Fundraiser for Lexie at Lake Forest High School. It was such an honor to be a part of this event. Thank you Robin Straus for your incredible support for our family over the past 11 years!

 

It isn't easy for a 14 year old girl to lose her hair and go through massive body transformations due to the treatment drugs of choice and be able to stand proud in public. 

The LFHS girls gymnasts were so kind and caring toward Lexie and our family. The girls on all 12 teams wore green bows to show their support. We cannot thank the participants enough for their amazing efforts and their loving kindness.

Lexie was pretty sick last week with nausea and vomiting but has had a great weekend at home with family and friends. 

We are heading back to Cincinnati in the morning, Lexie needs labs tomorrow and then Tuesday begins another 4 days of ARA-C. 

Please pray for protection from all side effects and safe travels tomorrow. I hear we will be driving in the path of snow and freezing rain.

January 7, 2015

Our day started abruptly yesterday when someone pulled the fire alarm at our apartment complex and we had to evacuate at 4:30am! Come on people, really?!?

Lexie was admitted and received her chemo. She was up most of the night in the bathroom due to the large volume of fluids she is receiving and vomiting. She will receive IV ara-c again this afternoon, then 2 more infusions at home through home health services. She is sleeping as I write and I'm hopeful the nausea/vomiting has passed and we will be discharged as planned this afternoon. 

Please continue to pray that God would alleviate all discomforts related to her chemo and protect her from fevers. 

I am claiming Psalm 112:6-8 "Such a man will not be overthrown by evil circumstances. God's constant care of him will make a deep impression on all who see it. He does not fear bad news, nor live in dread of what may happen. For he is settled in his mind that Jehovah will take care of him. That is why he is not afraid but can calmly face his foes."  

The genetic test results on Lexie's lymph node did not provide any information as to whether or not there is a genetic link between the girls cancers. Steve and I will have blood tests as they start looking at our DNA for any clues. I don't know what's worse ... knowing there is a DNA link or knowing you just have really, really bad luck! 

Mack saw the eye doctor here in Cincinnati yesterday and it is time for another cataract surgery. We anticipate that being scheduled within the month. I will keep you posted. 

Thanks for loving us the way you do and supporting us in so many different ways. God is good!

January 6, 2015

Watching our daily dose of celebrity gossip I said to Lexie, "Can you even imagine living the dream 2-4-7?"

Without skipping a beat she replied, "I can't even imagine living a very normal life at home 2-4-7!"

Hahaha. She's so witty!

January 5, 2015

We made it back to Cincinnati and escaped the snow.

 

Still relishing our moments at home. I often wonder what life would have been like without crisis after crisis. The only way I can envision "that life" is through the memories of my childhood. I just realized that after 20 years of illness ... 10 heart surgeries, leukemia, 2 relapses, a bone marrow transplant and now lymphoma, I don't know what normal feels like anymore and I am numb on the inside. I'm sure this is some sort of coping mechanism my body and mind have taken on, but I want to feel again ... I want to live again. 

 

Don't get me wrong, I think we do a really good job of "living" within the constraints that have been put on us and we always find joy in the midst of suffering. What an amazing gift that is! I am eternally grateful for the blessings that have been given to us and the lessons we have learned along this journey. I can honestly say that I wouldn't change it if I could turn back time. We are better people because of this path we have travelled and we see things differently. I just wonder if there will ever be relief? Will there ever be a mountain top to enjoy or a field to rest in? Or will the valley keep us until we are too old to enjoy the other views?

 

Lexie continues to feel great! We are gearing up to be admitted again tomorrow for cytoxan and 4 days of ARA-C. Ugh! I don't like the ARA-C and I'm not even the one getting it.

 

Please pray for continued tolerance to chemo and protection from fevers which is a common side effect that would buy us another unexpected admission.

 

It is my understanding that some genome testing on Lexie's lymph node is back and we may get some answers tomorrow as to whether or not there is a genetic link between Mackenzie's leukemia and Lexie's lymphoma. I will keep you posted.

 

Thank you Sue Matheson, Joan MacArthur, Sara Plucinak, Kimberly Wedl and Mrs. Swanson's 5th grade class for the care packages that arrived this week! 

 

I am at a loss for words to express how much your continued love and support means to us. The mail is truly a life line for us and we look forward to it every day!

 

Keep PUSHing and PULLing

(Pray Until Something Happens and Pray Until Lymphoma Loses)

Much love to you all!

January 3, 2015

Thank you Monica Glavey for taking the time to share our story with the Believe Project at the Daily Herald. Gods timing is impeccable! You truly are a Stewart of Love! So great to see you today!

So hard to say goodbye to the chaos! Love having a house full of kids and adore each and every one of them. We lived large this weekend and for a moment ... life felt normal.  

Heading back to Cincinnati in the morning, reality calls.

"I've got this little cancer thing to take care of"



January 2, 2015

We made parole yesterday and sprung from the hospital!

The exhilarating feeling of being discharged is hard to describe. You suddenly feel a whole new appreciation for things around you that you didn't notice or care about before. Lexie has been feeling great.

Because the nature of her fever was unknown, they decided to push back her scheduled chemo for today until next week.

 We took full advantage of Lexies good counts and adjusted chemo schedule by spontaneously driving back to Wauconda last night for a few nights in our own beds!

We never expected this blessing to drop down from heaven. Happiness is exuding from our home! 

"Thank you Father for your amazing grace, Your sufficiency in meeting our needs, Your tender loving care and Your constant watch over us. We love you more and more everyday and praise You for all You have given us. Amen."