Friday, February 27, 2015

February 27, 2015

Lexie did really well in Day Hospital today! Thankfully the dreaded Depo shot is behind us for another two months.

Lexie did great with the pentamidine infusion and we are so thankful her mouth sores are almost gone!

We decided to make a quick trip home to recharge and gear up for Tuesday's admission. Neither of us are ready to see the mother bag again.

Thank you Wauconda Health Care Club for all the words of encouragement for Lexie and all your hard work in selling water bottles. We are so appreciative of your efforts and donation!

Please continue to pray for protection from all side effects and peace during our hospital stay next week. Praying this round will be better than the last one.

Wednesday, February 25, 2015

February 25, 2015

Clinic was uneventful yesterday.

Lexie has been feeling pretty good despite the horrible mouth sores from the methotrexate. Back to Day Hospital on Friday.

We thought this "Interim Maintenance" phase was going to be a break ... a welcomed lighter phase of chemo but the inpatient days sure take a toll on us mentally and emotionally. Already dreading Tuesday wondering how we can possibly weather the storms of more puking and feeling SO couped up.

Please pray for healing of Lexie's mouth sores and protection of her liver and kidneys. And for a little joy and happiness to be found in the midst of these tough days.

We are so grateful for all of your prayers! Keep PUSHing and PULLing!

Sunday, February 22, 2015

February 22, 2015

Quick update to let you know we made it out of the hospital yesterday!

It was nice to just snuggle up in a blanket and lay on the couch all night.

Lexie woke up today with a horrible headache, vomiting and diarrhea. Got some meds down her and she seems to be feeling a little better.

Please pray for healing of her broken body and protection from all harm.

The roller coaster of emotions is tough but we are trusting God hears our prayers and will tenderly care for us while meeting all of Lexie's needs.

Thank you Kendra Hart for the sweet care package waiting for Lexie when we arrived home from the hospital and the 4K for Cancer Team for your continued love and support! We are most grateful!

Keep PUSHing and PULLing! xoxo

Friday, February 20, 2015

February 20, 2015

It's a fine line between giving up and surrendering. I'm not sure where I am on that continuum, but what I do know is that I don't have a lot of fight left in me.

Lexie continues to have a fever, blood cultures drawn, antibiotics started and our get out of jail ticket revoked. We are stuck here.

Disappointment is an understatement. In the big picture and grand scheme of things this is just a little bump in the road, but when your reserves are low, the little things feel so much bigger.

I am trying my hardest to use the little energy I do have left to focus on the positive and all the things we have to be grateful for (which is an abundance!) but my humanity wants to wallow in self pity and scream "this sucks, I hate this and I don't want to do it anymore"!

Who knew 10 years later roles would be reversed ... this is Lexie and Mackenzie back when Mackenzie was fighting cancer.

So grateful for this precious gem who came to brighten our stinky day.

Kara & Lexie

Thursday, February 19, 2015

February 19, 2015

Lexie's grumpy today ... Not very excited for school but thankful for her caring, understanding and PATIENT teacher!

 

Please take a moment and pray for Lexie's temperature. She has been borderline this eve and we are on the verge of the whole septic work up/ blood cultures, antibiotics etc.

 We are both feeling mentally weak and not up to spending ANY extra time here.

Wednesday, February 18, 2015

February 18, 2015

The power of prayer never ceases to amaze me nor does the feeling of being covered by it.

Peace and calm infused our room last night as medications helped Lexie's vomiting to cease and sweet slumber prevailed.

I am coping better today. We collaboratively decided it was best if Lexie just slept these couple days away rather than being miserable. Her methotrexate infusion was completed this afternoon and now the race to flush her body with fluids and clear the toxic drugs from her system begins. 

Please pray for protection of Lexie's kidneys and quick clearance of the methotrexate. 

Tomorrow we are hoping to back off on some of the medications helping Lexie to sleep without the return of nausea and vomiting.

I can't thank you enough for all your prayers and support. You'll probably never fully understand what a gift each and every one of you are to us unless you've lived on the receiving end of such amazing and generous love. I can't fathom this path without each of you. Thank you for holding me up when I am weak, for carrying a portion of my burden by choice, for unselfish love poured out and witnessed through the answers to your prayers and for continuing to walk the front lines of this battle by our side. 

May God bless you each richly through your desire to help and may you hear Him whisper "well done my child, well done".

Tuesday, February 17, 2015

February 17, 2015

Today was just a bad day all together.

It's been one of those days with an abundance of mishaps, as if the universe is against us (which of course I don't believe) and anger seems to be my emotion in abundance today.

I'm realizing that deep down I have more anger than I knew I harbored about all this illness in our family and its probably been building for 20 years. Lately, it seems to be surfacing easily with the little nuisances of the day. It's not something I am proud of, but I am human. Now I just have to work on letting it go. 

Life sure isn't fair.

The mother bag has arrived ... Actually in 3 bags because it was too much chemo to put in one bag. Within 30 minutes of the start of the infusion, Lex was puking her guts out and continues to puke. No one is quite sure why she is SO sensitive to everything. It will be a long 24 hour infusion and I'm exhausted already. 


Please pray for mercy today. That's it, just mercy. 

I just don't "feel" like doing this and Im in dire need of a blanket of mercy to cover Lexie and me. xoxo

February 17, 2015

"You know what makes me really sad? In my dreams... I'm bald now! Dreams are supposed to be my happy place."


 

Sunday, February 15, 2015

February 15, 2015

It's been a good week here in Cinci with Steve and the girls. So sad they have to leave tomorrow.

Steve and I had our blood drawn and Mack will get her cheek swabbed (since her blood DNA is someone else's after her transplant). Researchers will be looking at all of our DNA for clues as to why both girls got cancer. It may take months or years to sort out and they most likely will not find the answer but they should be able to determine if there is a genetic link or not.

Mackenzie had her liver MRI and all lesions are stable. Praise God! Her growth hormone was increased and we'll do this all again in another 3 months. She will also be back here for a week in March for cataract surgery on March 4th. 

Lexie will finally be going inpatient on Tuesday for her chemo. Please pray for tolerance to chemo and protection from side effects. She's been feeling so good from this long break and its sad to think she may be feeling lousy again when the chemo hits. 

Thank you so much to all those who continue to support us financially through the go fund me site and direct donations to the Hope for Lexie fund. Words fall short in expressing our gratitude, please know our hearts are overflowing with thanks! 


Also thank you to Kara Jacobs, Scott and Susan Johnson, Sadie Klingenberg, Laura Beckom, Jeanette Dziegielewski and Stacy Person for the cards and care packages! Your love and support means the world and its so nice to know we are not forgotten.

Praising God for bringing you all into our lives and for your willingness to travel this path with us. 

Thank you, from the depths of our hearts! 
Keep PUSHing and PULLing. 
Much love to you all...

Thursday, February 12, 2015

February 12, 2015

And the waiting continues ... I almost feel like if I was forced to choose one word to sum up my life it would be "waiting".

Lexie's blood counts are still not good enough to start chemo tomorrow. My emotions are all over the place ... I'm so happy Lexie is feeling good and we are free for a few more days, it's been a great break from the hospital. But then I'm frustrated and disappointed at the same time because the end is so far away and all these delays are prolonging it further. And then I feel guilty for being impatient as this particular delay is truly a blessing. Lexie's friends Mia and Gabi are here until Monday and now that we don't have to sit in a hospital room all weekend, we can actually do a few fun things. Which leaves me feeling grateful. It's a constant whirlwind of fleeting emotions.

Mackenzie and Steve are also with us in Cinci. Mack has an endocrine appointment and liver MRI tomorrow. Praying for complete healing and disappearance of her liver nodules. He is able!


We ended up returning to Cinci on Tuesday because Lexie was so anxious to get back to her school work. Honestly, she really missed her teacher who has gone above and beyond to build into Lexie's life. God truly orchestrated this special relationship and what an enormous blessing she is to us! 


"Thank you Lord for knowing our needs and providing in more ways than we could imagine. We trust in Your perfect plan. Help us to be patient in the waiting. Help us to keep our eyes fixed on you and to surrender when we think we've got life figured out or a better plan than the here and now. Don't let Satan deceive us or tempt us with his lies, open our eyes and let us see more of you. We choose You, Your plan, Your will, Your way. Be merciful and gentle with us in our fragile state. Forgive us for all of our sins. We love You and praise You and trust You. In Jesus Name I pray, Amen"

Wednesday, February 11, 2015

February 11, 2015

Just wanted to send a special Thank You out to the 4K for Cancer Team who will be biking coast to coast across America in an effort to raise money to enhance the lives of young adults affected by cancer.

What an amazing organization. Thank you for being inspired to ride for Lexie and using her journey to fuel yours!

Keep us posted as the ride gets closer and post the link to your blog so we can follow you along the way.

Thank you for your support in the fight against cancer. Every Mile Matters.

Keep riding! xoxo

Monday, February 9, 2015

A Note from Lexie ... February 9, 2015

Whats up everyone Lexie here!

So it has been a pretty good few weeks. I was a little sick 2 weeks ago, but it was nothing really.

What was fun was getting to go home for a week. I wasn't very productive, but it was fun. Mom and I went furniture shopping and I think we picked out some pretty decent stuff. Dad and I saw Project Almanac, which was really good! I recommend it.

Lauren, Mia, Gabi, Mike and Morgan all came to visit me which was nice ... it's always good to see friendly faces!

My wig came which I was a little bitter about because I didn't look the same ... actually I haven't really seen myself in it but huge thanks to Christina Bos and her fam for coming over and trimming it up!

I have been on a Panda Express kick for some reason. Gabi, Mia, and dad are on their way down to Cinci right now and are leaving on Monday. Kal is coming on Saturday. Thank you everyone for the birthday wishes and presents! You guys rock! I spent the day with Gabi watching The 100, and the evening with the lovely Meyer family and Lauren.

Speaking of The 100, I got all caught up with that show in 3 days. Shoutout to Kristen for getting me hooked on that show.

Mom, dad, and Mack bailed out on my birthday and went to Disney on Ice (I know, shady) just kidding, I'm over it.

I'm getting my blood drawn tomorrow to see if I am well enough for chemo on Friday-Monday.

Can we talk about the Walking Dead? No spoilers, but I am pretty upset with that whole episode. Well, maybe not the whole episode, but the major parts.

Going back to my birthday gifts/cards, thank you to all the chemo angels for the cards, especially Stacy Person for the flowers and Kara Jacobs for those sweet cat socks. Also thank you to Taylor Landwer (miss you chi), the University of Mississippi Athletic Department, the Sladek clan, Zack Ross (write you soon), Lindsay Shulock, Erin Frawley, the Fox fam, Barbara Jane England, Anne Skinner, Peggy Talbot, Miss Mia Coda, the Lehner family (love you guys), a special friend for a wonderful necklace, the Fitzgerald family, Kim and Kurt Schuring, Grandma Johnson and Grandma and Grandpa Meyer (I will call all you guys soon!), the Meyers (call you guys soon too ahaha), and Caitlin and the Hair Couture Designs Team (you guys did a fabulous job on my wig! it's amazing). Oh and a very special shoutout to my beautiful sister kali reagan for her great valentines care package! Love you kal, you made mom and I cry!

Thanks for keeping up with us!

 

February 9, 2015

Getting blood drawn before packing up to head back to Cincinnati.

It's been a great week at home! Literally dreading going inpatient tomorrow for 3-4 days after having so much freedom this week. Will post more about our time at home, the arrival of Lexie's wig and her birthday celebration as soon as I have a moment.

Please pray for safe travels, tolerance to chemo and that Lexie's kidneys will clear the methotrexate freaky fast so we can be discharged sooner than later.

Yes, we are literally praying for "freaky fast kidneys"!

Saturday, February 7, 2015

Tuesday, February 3, 2015

February 3, 2015

Thank you to the Moenning family for the awesome edible arrangement this week, we were so surprised when it arrived ... enjoyed every bite!

Thank you Kara Jacobs, Stacey Pearson, Lucy Burgess, Mindy Trogel and Bettye McMillen for the cards and birthday wishes.

We are so grateful for all your love and support!

Best therapy! So grateful for good friends!

Monday, February 2, 2015

February 2, 2015

And the puking continues ... amazingly when Lexies not bent over the toilet her appetite is still pretty good and she's able to eat and drink to keep herself hydrated.

So, so glad to have a break from the leg shots for awhile. Had labs drawn today and Lexies blood counts were not good enough to start chemo tomorrow so her scheduled was pushed back a week.

As bummed as we were to have her schedule adjusted we were excited to get the green light to head home for a week of recovery.

Please pray for healing of Lexies bone marrow and protection from all infections.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

We're home!