October 31, 2014

We all got a good night sleep last night. It has been a very busy day. People constantly coming and going.  Tons of bloodwork, echocardiogrm, ultrasound of ovaries to watch fertility issues, depo shot to stop her period so we don't have to worry about bleeding when platelets are low. Lots of things that we didn't have to worry about when Mack was going through treatment. Working with school to get thing coordinated for her work. Still trying to figure out housing but looking into renting an apartment. 

 
We just got the news the Lexie's bone marrow is clean. Praising God for perfectly healthy bone marrow!!!! Still waiting on spinal fluid results. 

 

Lexie has had a rough morning being poked and prodded and was vomiting. She will be getting two chemo's this afternoon.  Please pray specifically for NO nausea or vomiting and that she can continue to enjoy food! We are beyond grateful for all your love and prayers! Thank you so much for continuing to support us through all the many ways help has been orchestrated. Hospital staff has already made several comments about the amazing team of support we have around us. It made an impact on the staff when we were here with Mack. 

 

 We love you all! More later...

 

Super busy day all day. 

 

Lexie is just finishing her chemo now. It was a rough one with several bouts of puking. Really not much more to share, still waiting on spinal fluid results. 

 

Spoke with the social worker today, still trying to figure out housing. My mom's flight was cancelled due to weather so she will be flying in tomorrow. 

 

Please continue to pray for relief from all the nasty side effects that comes along with this course of treatment. Looking forward to waking up to God's new mercies and praying for a peaceful nights rest. 

 

Specific prayers for encouragement for Lexie. She's feeling down and super annoyed with people constantly asking her questions and "bugging" her. Today she said, "I hate having chemicals in my body, it makes me feel dirty." 

 

Thats our Letti! haha.  More tomorrow.

 

Can't stop the tears from flowing. 

 

Lexie has been violently ill and like Mackenzie, nothing seems to be helping to curb the nausea and vomiting. I sat on the floor in the bathroom holding her hair and rubbing her back so desperately wanting to take this away from her. 

 

And then I began thinking about the child in the room next to us that appears to be slipping away. There has been a steady flow... of family and friends coming to say their last goodbye. 

 

I told Lexie that family would give anything to be in her shoes. She asked if we could pray for them and we sat in bed sobbing, crying out to our Great God for a child we will never know. 

 

If you happen to see this message tonight or if God wakes please cover us in prayer. It's a tough night full of emotion.

Update

Well, I don't have a whole lot of news to share. 

 

 

Bone marrow and spinal results won't be back until tomorrow. Lexie has a marker on her 21st chromosome that in leukemia would make her a high risk. They don't have a lot of research on the impact this has on lymphoma, but they will be treating her with a "very high risk" protocol because of her age and this marker called iamp21. Treatment is 2 years with the first 9 months being intensive. 

 

Lexie is doing remarkably well for the moment... And we are staying in this moment, not letting the knowns and unknowns of the future rob us of this blessing!

 

Continued prayers for clean bone marrow and clean spinal fluid. 

 

Lexie will be getting daunorubicin and vincristine tomorrow as well as starting steroids. 

 

I'm afraid it's gonna be like a month long PMS session while on steroids! 

 

Continued prayers for protection from all side effects, more rest this evening and complete healing of our sweet (and sour) girlie!

 

Thank you everyone!

Amy

Updated at noon, 10/30/14

A note from Amy:

 

At the hospital and things just got painfully real. I have WAY too much baggage attached to these feelings. Flashbacks are digging the pit in my stomach even deeper. Lexie's surgery was postponed until 1:30 3:15 because they needed the OR for an emergent surgery. Pray for the family and child who took Lexie's spot in the OR. God knows their needs. 

 

Saw our oncologist briefly to sign consents for her spinal and bone marrow. He didn't have time to chat but I did ask about protocol. Sounds like they will have her on a "Very High Risk" category of protocol. That was NOT the news we were hoping for. She will get chemo pushed into her spinal fluid today and start IV chemo tomorrow. This just sucks! But somehow God always gives us the capacity to laugh and have fun together even in the midst of horrible situations. 

 

I'm banking on him to show up with His mercy and grace just as He ALWAYS has! Please pray for peace and comfort for Lex, as well as all the girls. Specifically on our knees today for clean bone marrow and clean spinal fluid. Also, storming the gates of heaven that the spinal chemo does not make Lexie sick. I'm not ready for the side effects and either is she. 

 

Love you all so much! 

 

Putting my phone down to spend time with Lexie now, but anxious to read all your messages when she is in surgery. Her surgery will be about 2 hours. I'll let you know if OR time changes again. Please pray... He hears and your prayers are powerful! #LettiStrong

On their way to Cincinnati

Lexie and her parents headed to Cincinatti last night for the first step in her treatment program, to insert the port needed for medication administration.