November 30, 2014

We had a great weekend together and enjoyed our Thanksgiving.

Lexie has been having a rough time coming off high dose steroids cold turkey! They gave her a weaning dose prescription in case it was too hard for her, but she is determined to be done with those rotten steroids and has refused the weaning dose. She was so achey yesterday she didn't get out of bed much.  Today seems to be improved and we are thankful that she is feeling a little better.

Steve and the girls left this morning and goodbyes are always hard. The silence is painful and I already miss the chatter and commotion that I am used to in our home. 

Kali, Mack, Lauren and I went to the festival of lights at the Cincinnati Zoo last night and it was amazing. As beautiful as it was, it was very hard to have two opposite emotions at the exact same time. Lexie's absence was a sad reminder that she is sick and we sooooo wanted her to be with us. I miss seeing her enjoying herself with her sisters and friends. I miss home. 

Not much on the agenda this week until Friday's admission to the hospital for Cytoxan and ARA-C. 

Please pray for tolerance to this next round of chemo and protection from all of the horrific side effects. Its exciting to think about the "induction" phase of chemotherapy being over, but then I think.... one month down and 26 more months to go, it's overwhelming.
 
Thanks to Haley Koujaian, Jan Reddaway and Jeanette and George Flentge for your cards and words of encouragement. I can't tell you how much the mail means to us! It truly is the bright spot in our day and we look forward to hearing from you guys!

Happy Thanksgiving, November 27, 2014

Thank you Sallie Sparks, Karen Kleman, Denise Manderfield, MeiLing Rumping, Mary Mitchell and Beth Moone for serving us this Thanksgiving and literally giving us the gift of an entire holiday dinner!

 

The food was amazing and we have thoroughly enjoyed every minute of this day. 

 

Your sacrifice of time and work in putting this meal together for us is greatly appreciated! 

 

We will never forget this Thanksgiving as you have given us the gift of these special memories together. That is priceless! 

 

Thank you for bringing the manna and being the hands and feet of Jesus! 

 

May God bless you abundantly for your acts of kindness!

November 25, 2014

We brought the party with us today... Getting ready for procedures

 

Thank you to The Rocks Family, Nicole Wyatt, Allyson Wamble, Jeanette Dziegielewski, Sadie Klingenberg, Laura Buchanan, The Wauconda Boosters Club, The Moenning Family and the Prayer Quilt Ministry at Joy Lutheran Church for the notes, warm wishes and care packages. 

 

We absolutely love getting mail and hearing from everyone ... it is by far the highlight of our day and we are so appreciative of the time and efforts you put forth to let us know we are not forgotten. 

 

Thank you Mrs. Spada... Lexie WILL keep sparkling! xoxo

 

Thank you to Mission Dolly Blankets of First United Methodist Church in Franklin, TN! We are so grateful for all your prayers represented in each knot tied on the beautiful blankets. Your prayers mean everything to us and we are counting on them to carry us through! Much love...

 

Thank you to The Fitzgerald Family for your kindness... And for some decorations for Lexies wall!

Thank you to Brian and Marg Hays for your endless prayers and words of encouragement... All your notes have been such a blessing to us. And we WILL be having a pizza party in the very near future! Thank you!

 

Thank you to LFHS Student Council for the very special gift for Lexie! She is planning her hours of gaming and fighting her dad for the controls! Your thoughtfulness will keep her busy during the endless days when we are couped up in our apartment! Thank you for your love, prayers and generosity!

 

I can't imagine fighting this battle alone ... it takes an army and you guys are the most amazing support we could have ever hoped for!

 

Spinal tap and bone marrow aspiration went smoothly today. No results until Monday ... Please continue to pray for healthy bone marrow and for every cancerous cell to die.

 

Lexie has done well today, a little nausea and feeling wiped out but considering what her body has been through in the past 4 weeks it's expected. 

 

Steve and the girls got here this morning and YES ... Mabel, our cat came too! Lexie couldn't be happier! Kali and Lexie's friend Lauren are busy putting up pictures and decorating Lexie's room as I type. Steve and Lexie are playing video games, Mack and I are playing battleship and for the first time in awhile I feel a small sense of normalcy and it feels amazing! 

 

Wishing Lindsay and Taylor were here too! We are so grateful for so many things this thanksgiving including your willingness to stand with us, hold us up and carry us when we are weak. We are looking forward to a week off of chemo as we gear up to be admitted again a week from Friday. 

 

Praying you each have a wonderful Thanksgiving and are shown rich blessing from above.

 

Love you all so much! Thank you from the bottom of our hearts! xoxo

November 24, 2014

The struggle is REAL today! 

 

My body is failing me... lets just say I physically feel weak, everything hurts and everything feels difficult today. I'm sure being up since 2am doesn't help. 

 

Sleep is difficult to come by... I'm exhausted all the time but can't sleep, its so frustrating. Maybe I'm having some sort of "sympathy symptoms". 

 

Lexie is feeling weak and tired, just breathing is an effort for her. Getting from our apartment to the hospital was a struggle today. Battling elevators, parking lots, traffic, people, etc... it all feels overwhelming. 

 

We have a clinic visit this afternoon and I'm guessing Lexie will need blood. In some ways I'm hoping she does because I know it will help her to feel better, but neither of us want to stay for the duration as the transfusion itself is 4 hours. 

 

We were hoping to have labs drawn this morning, so we could plan for the transfusion if she needs it, but when we got to the lab ... the "standing order" was not in the computer and there was a line 15 people deep. 

 

They day took an unexpected turn for the better when one of my best friends from high school made a surprise visit and then decided to stay the night with me tonight. We have been talking and laughing for hours... just what I needed today! Thanks Susie McSweeney for making the trip down and spending time with us!

Lexie did not need blood today, so clinic was a quick visit. 

 

Praising God for all the mercies that came flooding in this afternoon after our rough morning. 

 

Bone marrow aspiration and spinal tap scheduled for 8am tomorrow. Please pray for strength today and smooth bone marrow aspiration and spinal tap tomorrow morning. 

 

Prayers for Steve and the girls as they travel down through the night tonight, should arrive around 6am.

November 23, 2014

"Why do I feel so feeble... the wind could seriously blow me over." ~ Letti

Today was quiet for the most part... the cravings remain fast and furious and the days seem long because we can't wait for the steroids to be over! 

 

We tried to venture out to Barnes and Noble but Lexie was very winded and tired. Her hemoglobin is borderline and I have a feeling she will need a blood transfusion in cli...nic on Tuesday. 

 

Lexie has me watching so many of her shows that now all I can think of is "The Vampire Diaries" when I see a blood bag! We really need to get back to reality! 

Anxious to get the bone marrow aspiration and spinal tap done on Wednesday and then no chemo for 8 days! There's always a "but"... But then the following Friday Lexie will be admitted to the hospital again for high dose cytoxan and ARA-C. 

 

Yuck! I hate this!  

My mom is flying back to AZ for a week on Tuesday and Steve, Kali, Mack and Lexie's friend Lauren are coming down for the holiday. We are really looking forward to being together. 

Please continue to pray for healing, for strength and protection. 

Lexie has starting asking about what happens if she has a relapse. We talked awhile about God's character and how He already knows His plan for her life. We aren't going to waste our energy trying to figure out what will happen, we will rest knowing He is in control. No one can add a day or take away from Lexie's life. And when we get scared, we can trust Him to be merciful, loving, and faithful. We don't have to know how it all turns out... we can let our fears go and surrender control of our lives while trusting in His constant care. And then I reassured her that all the while we will be constantly and relentlessly bringing her before the throne, pleading for healing and asking God to examine and see the desires of our hearts.

"Father in Heaven, I call on you now to be near. Lord forgive me of all my sins. I am so undeserving of your mercy and grace and yet You freely give it to me. Thank you Lord. Almighty God, by the power that resides in the NAME of JESUS, by His blood that was shed on the cross for us, Lord we ask that you heal Lexie. Fill her bone marrow with the precious and perfect blood that was shed by Your son... the ultimate sacrifice so that we could have a relationship with You. Father, speak the words and command the cancer to leave Lexie's body immediately. Lay Your hand on her head and show her your Greatness, let her see You and know You more. Let her feel Your presence and experience You. Show her what The Prince of Peace looks like. Run every negative thought out of her mind and bind satan from all of his attacks on her as she is fragile and vulnerable and he knows it. Place a hedge of protection around her. Protect her from all physical harm, emotional harm, mental harm and spiritual harm. Keep her safe Lord. Lord we are scared, we are tired and weary, we've seen a lot of suffering and we have seen the work of Your amazing hand. To you be ALL the glory for everything good in our lives. Lord your faithfulness has withstood the test of time and I trust you with everything we have, including Lexie's life. Let the Holy Spirit intercede on her behalf and yearn and groan and utter words that only You know pleading for more mercy and more grace and more healing for our family. You are the same God who healed the blind man, who healed the leper and raised Your son from the grave. How easy it is for you to rid Lexie's body of cancer and restore her health. Father we ask all these things in the precious name of Jesus, Amen"

Isaiah 54:10 "Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed, " says the Lord who has compassion on you.

November 22, 2014 - A Note from Lexie

(Lexie chatting with a friend from home getting caught up on gossip related to love interests ... I hear her say, "What?!?  I get cancer for like a month and everyone's moved on?!?" Oh Letti ...)

What's up guys! It's me, Lexie.

 

Just thought that I would give an update to whom it may concern about life in Cincinnati.

 

I can't really remember my last post on here, so cut me a little slack if none of this makes sense.

 

I have officially gotten my unofficial wig today (that was interesting). It was super weird and I felt mildly like a criminal. But, hey, it works and it looks normal with a beanie.

 

I got some new spectacles today and some clothing (I think mom feels bad for me).

 

There is this fabulous little restaurant that we tend to visit called Max and Ermas, but I personally call it Ednas. Much easier to remember.

 

School has been great! I'm starting to like this more than regular school, but of course, I miss my friends and the normalcy of a regular school day.

 

Almost done with steroids for awhile! It's about time, too, I feel like a beached whale 95% of the time.

 

Totally irrelevant, but I feel I should share a story from the lovely book of Lexie on Drugs. It turns out that marinol hits me at the oddest times; I was in school and then in the middle of nowhere I just got the strangest sensation. All in all, I looked like the Joker because I could not stop creepy-smiling and giggling.

 

Yesterday was the last of the bad chemo, which is really nice. Now I'm just counting down the days for the steroids to be over with.

 

Okay, well, I will keep you all updated!

 

And ps. someone convince the Jclan to bring Mabel down!

 

And ps. again, I would like to thank everyone for their kindness towards my family and I. You all have been incredible and every gift, every prayer, every card, every anything, really makes a difference and please know you all are much appreciated!

 

November 22, 2014

Praising God ...

The appeal for Mack's growth hormone was written and sent this afternoon! Now we wait... about a month until we hear the verdict from BCBS. 

Please pray for an approval!

We are back at the apartment ...
 So far Lexie has done really well with her chemo, its the stinkin' steroids that are kicking her butt! Her abdomen is so swollen its painful to look at. 

 

I'm tired and weak. I spent all my reserve energy today knocking down doors to get Mack's appeal written. 

 

I'm so thankful for the next two days off from the hospital. 

 

Clinic appointment Tuesday, bone marrow aspiration and spinal tap on Wednesday.

 

Pray for good results, effective treatment, healthy bone marrow and for every cancer cell to perish... and peace for me. 

 

Because of Thanksgiving we probably won't have any results until the following Monday and the "waiting" is a huge trigger for my PTSD! 

2 Corinthians 12:9 The Lord has said to me, "My grace is sufficient for you, for power is perfected in weakness." Most gladly, therefore, I will rather boast about my weaknesses so that the power of Christ may dwell in me!
 

PLEASE send a quick video... you'll make our day!  Something that will brighten my day and lift Lexie's and my spirits ...

 

Thank you to the staff at Wauconda Middle School ... Lexie really enjoyed hearing from all of you!  

 

Thank you to the Michelau Family for raiding the aisles of Sephora for us! We will definitely benefit from your thoughtfulness ... And probably look a little better too!! 

 

And thank you to our "Arizona Prayer Team" (Babka's, Zuber's and Millers) for the care package for Lexie. She will be listening to some new tunes with warm feet and soft hands while munching on sour candy in the very near future! 

 

And thank you to all of you who continue to cover Lexie in prayer. 

 

We love you all so very much! 

PUSH and PULL!
Pray Until Something Happens... And
Pray Until Lymphoma Loses!

November 21, 2014

I have a pounding headache, I'm out of reserves and have very little patience today. 

 

I have confirmation that NOTHING has been done on Mackenzie's appeal. It has been about 6 weeks since I notified Endocrine to move forward with the appeal process, 4 weeks since they received my appeal letter and authorization to represent me and 2 1/2 weeks since our endocrine appointment where the doctor assur...ed me they were working diligently on it. I'm disgusted! 

 

I have reached out to a patient advocate to take our case, I've gone to family relations and administration.... someone WILL hear my voice whether they want to or not. Its just not acceptable and someone needs to be held accountable for this debacle! Please pray for resolution of this whole mess with endocrinology and insurance for Mackenzie's growth hormone. 

 

I'm trying so hard to let it go but I have a very hard time tolerating stupidity and incompetence and always want to "right" the "wrong". 

 

Lexie is attending school as I write and then we will head to Day Hospital for chemo.

 

She has been feeling down today, missing home and physically feeling crappy and hating the changes to her body that the treatment has caused. 

 

Please pray for the Holy Spirit to fill her up and lift her eyes to the Lord. Continued prayers for protection from side effects, for every cancer cell to die and for complete restoration of health. 

 

I guess I'm asking for it all! More later....

November 20, 2014

Special thank you to Jeanette Dziegielewski, The Wedl Family of Wauconda and The Tracy Family of Beaverton, OR. 

Lexie woke up today to the excitement of the arrival of your care packages. 

Encouragement for the day - check!!! 

Thank you for loving our daughter whom you've never met! Your kindness and generosity is an example to us all. God bless you through your love and support for our family. So beyond grateful for everyone who is standing with us through this long and exhausting battle against cancer. 

Hugs and Love!

...................................

Lexie has been attending school at the hospital 2 hours a day. She loves her teachers and has been working hard to catch up on her work. This has been a very positive experience for her and we are so grateful for their investment in Lexie's education and loving care they provide to her.

Gearing up for chemo tomorrow. We will be spending part of the day in Day Hospital, but praying she will tolerate chemo and be able to return to the apartment in the evening. 

 

Anxious for visitors to come over Thanksgiving break. I cannot even believe the holidays are upon us. I think we will celebrate Christmas in July! 

 

Still fighting with insurance and the endocrinology department for coverage of Mackenzie's growth hormones. To the best of my knowledge, nothing has been done yet. I spoke with the pharmaceutical company that has been supplying growth hormone to her while we have been in appeals and they will not ship more because they have been unable to obtain a copy of the appeal from Endocrine despite several requests. I'm sure its not even written yet! I have so much pent up aggression I'm ready to go for the jugular! Why can't people do their jobs?!?!

Please pray as God leads you... I'm tired and can't think of all our requests. 

 

Praying for the Holy Spirit to intercede tonight and bring those requests before our Almighty God. 

 

More tomorrow after chemo... xoxo

Novmber 19, 2014

"Why couldn't I just have broken my leg or something? I'd much rather that than cancer!" ~ Lexie~

Nine more days of high dose steroids and counting. They are miserable! I don't really know how to describe what they do to you. Imagine the worst case of PMS a hundred fold... super irritable, moody, no patience, insanely intense cravings for food, extremely bloated and uncomfortable, physical body ... changes, lethargic ... and the list goes on. 

 

I feel so bad for Lexie and desperately wish she didn't have to endure all of these nasty effects of the drugs. Little things like rolling over, tying her shoes, getting dressed and getting up from the couch are now difficult. The food cravings are insatiable thus she eats despite being so full it hurts. She's not hungry and doesn't necessarily want to eat, but the cravings are in control of her mind.

 

Please pray that God would supernaturally remove the cravings and help her eat normally and nutritionally as she finishes out this last week on steroids. I cannot wait for this course to be done!  

 

Pray that He would take away the bloating and discomfort in her abdomen and instill her with strength, courage, peace, comfort and happiness. Although the food cravings are so hard to watch ... I'm still grateful she enjoys food and I am not taking it for granted, because that is all about to change after next week.  The next phase of treatment has the potential to steal her appetite, bring on more nausea and vomiting, mouth sores, low blood counts, fevers, etc. 

 

So we pray in advance that God would pave the way and remove all of these obstacles for Lexie. That His mercy and grace would protect her and shield her from ALL potential side effects and complications, as He did for Mackenzie during transplant. We trust in His constant care and continue to keep Lex in an open hand allowing Him to work in her and through her.  

Please pray specifically for Friday's chemo... her last dose of daunorubicin and protection from its side effects. 

 

Also praying for next weeks bone marrow aspiration and spinal tap with methotrexate pushed in her spinal fluid. 

 

Praying for every cancer cell to perish and leave her body! Praying for healthy bone marrow and spinal fluid, praying for protection over all of her organs that they will maintain good function, praying for protection from all infections, praying for good recovery of her bone marrow as time goes on and it gets beat up. 

 

And just as importantly, praying that Lexie will see her worth in Christ, see her beauty from within and rise above the negative things in her life that are trying so hard to pull her down. 

 

I pray each day, that there would be at least one thing that would bring her encouragement and that she would see the good that God will bring out of this. 

 

Thanks for all the ways you continue to love and support us! 

Much love and many hugs!

November 18, 2014

Oncology clinic was uneventful this morning, just the way we like it! 

 

I met with the financial advisor at the hospital and we are in the process of claiming Ohio residency again so that we can apply for assistance to help with all of our medical bills. I have a lot of homework and its a little overwhelming but I am so thankful for the hospital's guidance and service in helping families in our situation. Please pray for a smooth and seamless application process.

 

Lexie is feeling nauseous today and I'm not sure why. I guess I forgot the medical course is always two steps forward and one back. I'm ready to forge forward and press onward without even looking back, nonetheless stepping back! I am hoping she will feel well enough to make it through school this afternoon. 

Please continue to pray for Lexie to tolerate her chemo on Friday without ANY side effects, for an extra measure of comfort and strength, for protection from all infections and for healthy bone marrow upon aspiration next week. 

 

Your prayers are the best gift your could offer us. God hears our cries, our requests, our desires. He knows our needs before we do. Help us keep Lexie in an open hand before the throne of our Great God! 

 

More later...

 

Thank you Syd Phelps for the wonderful poncho's! 

 We will sure to be comfy cozy while wearing them in this freezing weather! 

 

Send some Florida sunshine too! 

Love you!

November 17, 2014

Thank you Adrienne Fitzgerald for the gift of a smile (and the care package too!).

Much love!

We are celebrating a good day! Lexie attended 2 hours of school at the hospital this afternoon and was begging for steak when she was done. How do you say "no" to that?!? This is the most awake she has been in the past week. Thank you Father! And thank you Conner Rhodes for what has now become Lexie's favorite beanie! — at J Alexanders

 

Heading to the hospital tomorrow bright and early for an 8:00am appointment in clinic.

 

Lexie's NOT thrilled about getting up early... mornings are rough for her. No chemo scheduled for tomorrow, just a check in to see how things are going since being discharged on Saturday. Its frustrating because just about the time she is starting to feel better... she gets knocked down again by chemo. Friday she will be in Day Hospital for vincristine and daunorubicin ... last dose of dauno for this phase of treatment. 

 

She will have a spinal tap and get methotrexate in her spine as well as a bone marrow aspiration next Wednesday at 6:30am to see how the cancer is responding to treatment (the Wednesday before Thanksgiving - BIG PRAYERS!). 

 

Please join us in rising up in prayer and pleading for clean marrow, that every cancerous cell in her body would perish! That will complete her induction phase of treatment and then we enter consolidation with the dreaded ARA-C for which she will be hospitalized again.

 

Its so hard going back when you get a taste of freedom! We are incredibly grateful to be at the apartment. Today Lexie said "I feel so content, I'm so glad we got this apartment." She has been such a trooper!  Of course, she also said "it feels like I have 2 elephants stepping on my knees" referring to her bone and joint pain and "it appears a Jaguar attacked my face" referring to the scratches on her face from her sensitive skin. Thats our Letti! 

 

Overall today was a really good day and we give thanks to God for His constant care over us. 

I got word last week from Lindsay's cardiology team that she may postpone her heart surgery that was scheduled for December 15th as long as she doesn't have any fainting episodes or dizziness. I'm relieved I don't have to worry about being in two places at once. 

 

Please pray that Lindsay's heart would remain stable... we're hoping she can hold off 'til summer to have her surgery. Steve said, "I'm a little disappointed we cancelled the surgery... I just want to get all the crap in our lives over with." 

 

I know the feeling. I'm working on scheduling Mackenzie's cataract surgery... shooting for spring break. Still no word on our appeals process with insurance for her growth hormone. 

 

Please continue to pray for those details to be worked out. Asking God to approve the appeal for us!

Thanks again for all the creative ways you have come up with to support us through this process... I don't know what we would do without all of you, but I do know it would be miserable! 

 

Much love to you all and thanks for ALL you do!!!!!

November 16, 2014

The smell of rotting cells from chemotherapy and goodbyes ... I hate them both. 

 

The smells are all too familiar and triggers flashbacks from Mackenzie's chemo days. For the first time I wonder why we are going through this again. 

 

Today feels hard... it was hard to say goodbye to my dad, hard to say goodbye to Steve and the girls, it was hard to say goodbye to Lexie's friends and its hard to watch Lexie sleep all day. I am comforted by the fact that it is a peaceful sleep and pray that it is a healing sleep, but it breaks my heart to see the cancer treatment rob Lexie of her spunky personality and vibrant life. The teenage years are such an active time and to see that come to an abrupt halt is heart wrenching. I remind myself multiple times a day ... that in time, she may have a full life again. 

 

Then Jesus said,

"Come to me, all of you who are weary and carry heavy burdens,

and I will give you rest." Matthew 11:28

 

I pray that God's will aligns with the desire of my heart, and at the same time, surrender my will to His. I believe His plan is perfect and I trust Him with everything that has been given to me. 

 

Amazingly, amidst the difficult circumstances that surround us, we still find things to laugh about and cherish these days. We take so much for granted in this life and don't even realize it until its taken away from us. Even though today feels hard, we still have SO much to be thankful for and we feel abundantly rich in blessings. So when my thoughts start to spiral downhill, I consciously choose to fixate on all of the blessings in our lives and choose happiness. It doesn't come easy, but it is still possible to experience joy. 

Tomorrow should be a pretty boring day as we don't return to the hospital until Tuesday. 

 

I've heard we are expecting 3-5 inches of snow in Cincinnati and the city will shut down. I guess its good day to hunker down and hibernate. Thankful we don't have to venture out in the nasty weather.

 

Please continue to pray for healing and strength for Lexie. 

 

We are forever grateful that you are all in our lives... even those we have never met, but are following our journey. 

 

Thanks again for all of your love and support.
xoxo

November 15, 2014

We are out!!  (of the hospital)

Our apartment feels like a retreat after our inpatient stay these past 2 1/2 weeks. 

Lexie peacefully slept her day away yesterday without any nausea or vomiting from the chemo. 

Praising God for this direct answer to prayer. 

I lost count of all her prescriptions but I think it's around 15 or so... She's popping a lot of pills to curb all the symptoms but it seems we've found the right mix... for now. 

Her friends came down for the weekend and she is elated to be free to spend time with them. 

Please pray for an extra measure of strength today so she can enjoy her time with friends. She's very tired and takes frequent naps, sometimes mid sentence.

More tonight...

... later ...

Praising God for amazing friends because taking naps is SO much better when you have a friend to nap with!

 All is right in the world at this moment ...

 

So good to be together! Hoping to lay low until clinic on Tuesday. Wish these girls could stay all 10 months!

 

November 14, 2014

Its chemo day and I wish I could just blink this one away.

Rightfully so, Lexie has been struggling with all the lousy body changes that go along with this brutal treatment course. The steroids heighten every emotion and lately "sad" and "annoyed" have taken over. She misses her friends, her life, her routine.

Please pray that God would bind Satan and keep him far, far away from Lexie during this vulnerable time. his lies are deceptive and easy to believe when your feeling beaten down. "Lord, I come before you now and lay Lexie at your feet. Father cradle her in Your arms and tell her the truth. Remind her she was made perfectly in Your image, her worth is in You and these trials in her life shall pass. Show her that You are in control, let her physically feel Your presence, reveal Yourself to her so she can know You more. Show her that You work for good through ALL things for those who love you. She only see's the bad things right now Father, unveil her eyes and open her mind. Encourage her today God, lift her spirit and help her to find joy in the midst of this darkness in her life.

Thank you Father for the friends, family and strangers you have brought into her life to pick her up and help her carry on. Give her the strength she needs and the feet to walk this path. Instill her with courage and hope that could only come from You. Let others see Your light, Your mercy, Your grace, Your faithfulness, Your love through her.

Let Your presence be undeniable in this room Father so others may see Your greatness and glorify Your name. Lord, protect her from all the side effects of chemo today. I boldly ask that You would remove all nausea and vomiting, and replace those side effects with determination and motivation, strength, energy, courage and happiness.

This is the day the Lord has made, let us rejoice and be glad in it! Abba Father, I lay it all down and surrender all these things to You. You are more than able and Your faithfulness has withstood the test of time and been so evident during all of our hardships these past 20 years.

Thank you for loving us and caring about all the details in our life. We love You and praise You. In Jesus Name I pray, Amen."

Please continue to lift Lexie up in prayer in whatever way God moves you.

I honestly cannot thank you enough for staying with us on this journey.

I wish I could write each and every one of you individually to let you know how much you have impacted our lives.

I pray that you are blessed ten fold through your support for our family.

Know that I read every post, we see all the donations and messages on the gofund me page and the meals page and there aren't words that could express our gratitude.

Much love and many hugs to you all!

xoxo

November 12, 2014

Praising God tonight that He is omnipresent! There is so much need around us, I can't even comprehend the burden He must feel and carry. But I can rest knowing He is big enough, He is able and His grace is sufficient.

Lexie had an ok day. She is feeling miserable from the high dose steroids... 2 weeks down and 2 to go. Not only do they make you irritable, but they make you have totally irrational food cravings 24/7. She is so bloated from food and steroids, her abdomen is rock hard and it's not muscular. Poor thing... I feel so horrible for her. 

 

"Father God please remove Lexies insatiable food cravings, lay Your hand on her stomach and move things through her gut to provide comfort. Lord, please decompress her belly over night and bring her relief when she awakes. Jesus continue to breath life into Lexie, healing every cell in her body and commanding every cancerous cell to perish. This is NOT cancers home. This is a child of God. This was not your design for her body. God we boldly ask you, in the name of your Son Jesus Christ, for Your healing hand to restore Lexie's body to your original and perfect design for her. We love you Jesus and we praise you for your unconditional love for us."

We got the results of Mack's liver MRI which was labelled as "stable". That in and of itself was awesome but I couldn't help but fixate on the words surrounding the "2 larger lesions appear smaller in size" and "the other smaller lesions were difficult to visualize"! Praise God! "Lord please continue your work in Mackenzie and restore her liver to perfect health. Continue to shrink those liver lesions until they are GONE. We believe in your healing power through the blood that was shed on the cross for us and in Your Holy and precious Name. Amen."

My dad arrived in town tonight after many flight delays due to bad weather. Steve and Kali are coming down Friday, and Mack is with us for the week. 

 

Lexie is so excited about her friends coming to visit her too this weekend. 

 

Pray for Lexie to be well enough to thoroughly enjoy her friends and that we get discharged as planned on Saturday morning so they can all hang out at the apartment together and feel somewhat normal. What is normal anyway?!? 

 

Thanks again for sticking by our side and walking this path with us. It is beyond words that could describe how good it feels to have an army with us. And to have people care about the trials we go through.  

We love you all more than you know!
xoxo

November 11, 2014

Lexie had a good night last night.

The next couple of days should be pretty low key for her, gearing up for Fridays chemo. Please continue to pray for tolerance without side effects, for every cancer cell to die and that we can be discharged to the apartment on Saturday as anticipated.

It is, however, a busy day today for Mackenzie has her endocrine appointment and liver MRI are today. We are seeing endocrine as I write and they are doing a cortisol stim test and a bunch of labs. Still fighting with insurance for the growth hormone even though we have proven efficacy of the drug. Her doctor has still not written the appeal letter and therefore nothing has been submitted yet for this next round of appeals. 

So grateful for a ONE stick IV start!

 

Please pray that her doctor would have clarity, time and energy to write a phenomenal letter advocating for Mackenzie. 

 

Pray that Mackenzie would be a nagging thought and ever presence on Dr. corathers mind that won't go away until the appeals are submitted. 

 

Pray for the people at the insurance company who will be reviewing her case. 

 

Pray that God would open their minds and see how much Mackenzie needs the growth hormone. 

 

Also please pray today for good MRI results and that the tumors in Mack's liver remain stable with no growth.
 

xoxo

More later...

November 10, 2014

We had another good day today. 

 

Lexie is off her IV fluids now and taking all her meds by mouth. Not looking forward to the next round of nasty Daunorubicin on Friday. She will be back on fluids and IV meds to help her through the bad phase but if she does well and can get back to oral meds on Saturday we should be able to be discharged to the apartment. 

 

Please pray for this to be a smooth transition.

Sherri and Haley brought Mackenzie down today for her appointments tomorrow. Pray fiercely that Mack's liver MRI will be stable tomorrow and that results show no new growth so that she can continue on growth hormone therapy. 

 

Also pray that our appeal was sent and accepted by insurance. Steve has to work this week and he continues to coach basketball which began today. Please continue to pray for Gods provision over our family. 

 

Xoxo

Care Package ideas for Lexie ...

People have been asking what they can send to Lexie as a care package.  Amy has sent some suggestions:

Food wise, Lexie is into anything salty because of the steroids ... Cool ranch Doritos, Kettle Cooked plain potato chips, Pringles (plain, sour cream and onion or barbecue), Okie Doke cheese popcorn, pretzels. 

 

She is also in need if fun fuzzy socks.

 

iTunes and amazon are best for gift cards because she reads on her kindle and loves music too. 

 

Also gift card to Pink or PacSun as she is wanting to do some online shopping to feel "normal" since she can't get to the store. 

 

Other things I can think she needs if anyone asks are cute comfy pants... Women's size small or medium would be good.  She is getting and will continue to get very bloated with the treatment and won't be in jeans for a long time.  Sweatshirts size medium and Cute beanies are always good too. :).

 

Oh and ANYTHING Ed Sheeran !

Letti Strong !

Who's rocking this new look?!  Lexie, that's who!  You GO girl!

 

Sunday, November 9, 2014

Moved into new digs ....

You can now mail correspondence or care packages to our new address:

Lexie Johnson
c/o Amy Johnson
3031 Eden Avenue #355
Cincinnati, OH 45219

God moved these new friends from 1st Church of Christ in Kentucky to show up and help unpack our apartment and put together our couch and coffee table. 

We are so appreciative of all their hard work and their willingness to be the hands and feet of Christ. 

We've had a great day today. 

 

All of Lexie's medications have been successfully changed from IV to oral... Praise God! The steroids are raging in full force and the odd eating habits have set in. Today it's meatloaf and mashed potatoes for breakfast, lunch and dinner. 

 

So grateful for all of your prayers that have truly carried us. 

 

So thankful that God continues to move people to help meet our needs at home and in Cincinnati. 

 

He is SO good... All the time.

 

Our beautiful girl is a little camera shy...

Love you all!

 

Still a beautiful young lady, inside and out!

(collette)