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!

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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."

January 24, 2015

Lexie's definition of a "double shot"... It's not expresso!

January 27, 2015

So thankful for technology, FaceTime with these yahoos always helps to lift the blues!

January 26, 2015

Our new home away from home... Praising God for His many provisions including our new apartment!

I think we figured 6 leg shots down and 54 more to go ... oh that sounds just awful! Fortunately Lexie has a high tolerance to pain and just goes with it. What a trooper!

 

Back in clinic Wed, Fri and Sun to finish this round of asperagenase shots, IV vincristine and a breathing treatment to prevent pneumonia. Next week she will be admitted for 4 days to receive what we affectionately call "the mother bag" - a 24 hour infusion of methotrexate. 

 

As much as we love our new apartment we are terribly missing home. Hoping to make it back for Lexie's birthday in a couple weeks. 

 

Please pray for Lexie's bone marrow to recover quickly so she can stay on track with her chemo and make it home to celebrate with family and friends. 

 

Thank you Dave and Katie Naslund and Andy and Becky Dellicker for the cards, love and support!

January 22, 2015

"Mom! I look like a Chia Pet!" ~Lexie

We're in and settled at the new apartment.

Thank you mom, Jenny, Pete, Molly, Amy, Kathleen, Sallie and Beth for all your help with packing and moving ... It would have been brutal without you! So, so thankful for your help, we love our new place.

Lexie's in clinic every other day now to receive two leg shots of chemo since she can't have the PEG anymore due to her adverse reaction. She was a champ today, so proud of her. Anticipate the need for blood and platelet transfusions this weekend with blood counts falling.

Please continue to cover us in prayer as God leads you.

January 20, 2015

So I checked in on Lindsay this morning ... This is how our conversation went ...

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"Anaphylaxis is fun", said no one ever!

 

Our day started off great, Lexie had a cocktail of drugs and was cracking us up talking about birds that were supposed to paint the walls for money but put up wallpaper instead, being on a pirate ship and setting sail for 3 months, having 6 fingers, thinking the staff was harvesting her organs and her husband that died, but she couldn't talk about it. We successfully avoided the anticipatory nausea and vomiting with mind altering drugs, but couldn't avert the anaphylactic reaction to PEG. 

 

Lexie went from a mild scratch to burning skin, to coughing/ vomiting, wheezing, throat swelling, oxygen, epinephrine, Benadryl, Atarax and steroids within a matter of seconds. 

 

It was a flurry of activity and needless to say, she was scared feeling like she was going to die. I now need that cocktail of drugs Lexie had this morning to wind down! 

 

So thankful for God's constant care, the quick team of doctors and nurses and a positive response to treatment. 

 

We are home! Please pray for a quiet, restful night. 

 

Tomorrow is moving day and we will need our energy! Below you can see how our day started, and how it ended. You just never know what the day will bring in this crazy world of oncology. 

 

Keep PUSHing and PULLing!

 

January 19, 2015

While we're busy packing and tending to Lexie's needs in Cincinnati, grandpa's on duty in AZ.

Waiting to be seen in ER with Lindsay. There's never a dull moment!

Please pray for wisdom for the doctors who see her.

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Woohoo ... Just got word from the ER ... Yea for strep! Lindsay's heart is tolerating fever/illness well, should be discharged soon and will be feeling better in 24 hours! Strep is the best, right!?! Haha

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Just wanted to post a quick thank you to Natalie Czernicki for taking the time to write and draw for Lexie, Kara Jacobs for your continued support through Chemo Angels, Nicole Spada and her beautiful mom for the knitted blanket ... it's gorgeous! And Tiffany Dickerhoof, Dr. Michael Draznik and his staff, Kate and Tonya, for your generosity and kindness, we are so thankful for all the goodies you sent over!

 

 

Much love to you all!

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!