March 20, 2015

It's been a long day of WAITING ... but I'm happy to say we will be discharged around 8:30pm! Lexie has done well, and we are still planning on heading to Florida in the wee hours of the morning. Please pray for safety and protection for Lexie while we are away.

Lindsay's mystery rash persists, she will be seeing the dermatologist in AZ again on Monday and we are trying to get her into a dermatologist here in Cincinnati.

Praying for resolution, healing, mercy and grace.

March 19, 2015

Quick update:

Lexie has been doing ok. She was throwing up a little this morning but seems better now. She will get an infusion of pentamidine to help protect her lungs from infection once her methotrexate clears and we are still planning on discharge sometime tomorrow.

Lindsay saw cardiology at Phoenix Childrens and all is well with her heart. Praise God! They pulled dermatology into the room to see her rash and they said it was "impressive". Spoke with the dermatologist she has been seeing in AZ last night and biopsy came back "spongiotic dermatitis". Not exactly sure where this leaves us. We are changing her heart medication to make sure there is no drug reaction, more labs for mono/EBV and still waiting on strep titres. There is still much concern that she is not responding to any treatment as the rash continues to progress and we can't find the source of the symptoms. 

Please pray for healing for Lindsay (and Lexie and Mackenzie). Much love to you all!

March 17, 2015

After a busy week at home, we are back in Cincinnati and Lexie is in the procedure room having her spinal as I type. Gearing up for her third high dose 24 hour methotrexate infusion.

Please pray again for protection of her kidneys, quick clearance of the methotrexate and from all side effects including nausea/vomiting. To be honest with you I feel drained, my plate is full and I'm feeling anxious and overwhelmed. Don't get me wrong, Lexie is doing really well and I am hopeful this round of methotexate will go as well as the last round with our plan for aggressive anti-emetics.

But we have a few other things going on ... Medicaid continues to be a battle and is consuming us with their need for all kinds of documentation that is time consuming to obtain. It seems to be a losing battle and added stress, but I will leave it in an open hand before God, trusting Him to meet our needs and see what He does with it.

Lindsay has had a very strange rash all over her arms, legs and now sides for the past 6 weeks. She has seen a few doctors, been on multiple rounds of steroids, antihistimines, antibiotics and nothing seems to be helping. She's had numerous labs drawn and in typical Johnson fashion, it seems to be mystery. She saw the dermatologist again yesterday and he was concerned about her lack of response to treatment. They biopsied her skin and want her to see cardiology this week to rule out a strep infection in the conduit or valves of her heart. They also discussed seeing some other specialists and the thought of more problems and more doctors appointments makes me want to scream or pull my hair out.

Please pray for healing of Lindsay's rash, for wisdom and guidance for her doctors and that we can figure out what is going on and get her some relief. We are considering bringing her out to Cincinnati if necessary. I will keep you posted as we get biopsy/lab/cardiology results and a plan.

We are supposed to drive to Florida on Saturday (providing Lexie gets out of the hospital on Friday). Unfortunately, when we booked this vacation we didn't know what life would look like and we didn't realize that Steve's spring break is different than the kids which means he will not be able to join us. I'm undecided at this point if a vacation is going to be relaxing or stressful.

As soon as we return, Lexie will go inpatient again and Mackenzie will stay in Cincinnati with us to have another eye surgery for her cataracts.

My head is also still swirling with her school situation and trying to figure out what type of placement will be most beneficial to her as we are realizing a tradition school day is not going to work. Please pray for our meeting with the school district on April 20th.

Taylor and her boyfriend are here in Cincy with us for the week. It has been a nice distraction for Lexie.

Thanks again for all you do for us, for loving us, praying for us and caring for us the way you do. We feel blessed to have you by our side through all the twists and turns of life.

March 7, 2015

Kyle Jenkins YOU are amazing! Sooooo thoughtful ... Thank you for such a special homecoming for Lexie!

 

 

 

Thank you to the Anderson family for the special care package that was waiting at our apartment when Lexie got home. It came in handy for our journey back to IL today. And thanks to Stacy Person and the chemo Angels for your continued love and support! xoxo

March 6, 2015

Here's the scoop:

Lexie has done great this hospitalization (with the help of drugs), but we are SO ready to get outta here.

Having labs drawn at 4pm, if her methotrexate level is below 0.1 we go home, if not ... We stay another night.

Please take a second to pray specifically that her level is less than 0.1 and we can be discharged today. More when the results are in..

Later ..............

0.05 is the word!!! Woohoo! We're going home!!!

So incredibly thankful for Gods grace the past 4 days. Your prayers and God's answer through His tender, loving care of Lexie's broken body (and my fragile state of mind) have carried us through another hospitalization. We are grateful for each and every one of you!

March 5, 2015

Thank you so much for your commitment in praying for Lexie and our family.

This hospitalization has been night and day different from the last. Lexie's been feeling well without ANY nausea and vomiting!

Praise God!

She slept most of the day away yesterday, but has been awake and cracking us up today.

Please continue to pray for her kidneys and clearance of the methotrexate. She's needed a couple doses of Lasix to help get rid of all the extra fluid she is receiving to flush her kidneys but so far so good.

Praying for discharge tomorrow eve!

March 4, 2015

Amazing Grace !

March 3, 2015

Gear up prayer warriors ... Here we go again.

Lexie is in good spirits (with the help of drugs, haha!). And we are hopeful this round will be better with a more aggressive plan to fight the nausea and vomiting. And to top it off, Kali is here for the week for moral support! Port accessed, IV in and hydration started. ETA for the mother bag is 6pm.

We had such a great weekend at home and are now feeling recharged. Lots of prayer requests today...

Please pray for protection of Lexie's kidneys, quick clearance of methotrexate, and protection from all side effects.

Also, I met with our financial advocate this morning and she appealed our Medicaid denial! This is HUGE! Please join us in praying our appeal is approved and Lexie qualifies for services. Storming the gates of heaven for this unexpected opportunity.
 
Switching kids ... We are struggling with educational placement for Mackenzie next year and trying to figure out what is best for her. Big meeting on April 20th that we ask you to join us in prayer. Praying that God leads and guides us in our decisions for Mack and that He would open and close doors without finances or school decisions being a barrier. We just want what is truly best for Mack to help her reach her potential ... No matter what that looks like.

Side note: We are SUPER excited we got in the "suite"! We're in a big, cheerful room which is such a nice unexpected surprise, especially since Kali is with us for the week. Feels like we won the lottery! Praising God!

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"

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

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"!

February 8, 2015

Happy 15th birthday Lexie!

February 7, 2015

If your out and about in Wauconda today...

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!

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!

January 30, 2015

Another rough day of puking.

Lex did not like her breathing treatment at all so that medication (pentamidine) will now be switched to IV. She will also start receiving monthly infusions of IVIG to aid her immune system. And she's starting a low dose hormone to help deal with the hot flashes she's been battling.

Sunday is her last day of chemo leg shots until April. Thank goodness ... They're horrible!

My mom flew back to AZ today so Lexie and I are flying solo for a bit .... Lexie will have another spinal on Tuesday to get more chemo in her spine then be admitted for IV vincristine and a 24 hour infusion of methotrexate. 

Please pray for tolerance to the methotrexate, that Lexie will be discharged by Friday and feeling well enough to head home for the weekend to celebrate her birthday. 

Also prayers for her vomiting to resolve and renewed peace ... It's been a rough week.

January 29, 2015

Lexie spent a portion of the evening last night throwing up and isn't feeling so great this morning. Her Igg level dropped in half and I'm wondering if she will need to start on the monthly IVIG infusions like Mackenzie needed for immune support. That could be another insurance battle ahead. And unfortunately we just got word that our Medicaid application was denied.

So disappointed, but I'm not defeated. I will continue to cling to the cross and trust in Gods constant c...are and faithful provision. He IS trustworthy!

Mackenzie has been sick with upper respiratory symptoms for the past 2 weeks. Steve took her to the pediatrician this morning and she started back on breathing treatments for her lungs. Her lungs are fragile from the radiation she had in preparation for her bone marrow transplant so she gets this often. 

Praying we can nip it in the bud so it doesn't advance to pneumonia. 

Please continue to pray for us today, the sky is grey and gloomy and we could use some sunshine. Love you all!

January 28, 2015

Yesterday was rough,

Lexie was throwing up quite a bit but she bounces back so fast it amazes me.

Clinic today was uneventful, IV vincristine in her port and 2 leg shots of L-asperagenase.

Praising God for bone marrow that recovers quickly after getting beat up. Lexies labs look great and she should be ready to go inpatient on Tuesday for the "mother bag" of methotrexate as planned.

We got word today that Lexies wig is done and ready to be shipped. I can't fathom hand sewing all that hair! So excited to see it in person and praying that it fits perfect and looks natural. Also praying it helps her feel like the beautiful person she is! God is good!

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

So I learned a few things about Lexies wig...

     1. She can swim in it.
     2. She can wash it, blow dry, curl and style it including braiding, bun or pony tail.
     3. Each strand of hair was hand sewn onto the cap.
She had so much hair that if the wig maker had to purchase the hair for her wig it would have cost $20,000.00 just to purchase the hair!

Luke 12:7 "And the very hairs on your head are all numbered. So do not be afraid; you are more valuable to God than a whole flock of sparrows."