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.

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!

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

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

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.

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".

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."

 

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...

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"