Tuesday, November 22, 2016

Thanksgiving Week Meals

Hi, friends,
As Ava is admitted back into Children's in Milwaukee to receive treatment (see Team Brighter Days FB page), the meal schedule has been reactivated for this week, through next Monday. Things to note:
  1. Only lunch for one adult is needed.
  2. We are not utilizing volunteer drivers this week, so we welcome you to order from restaurants that deliver. (You can see this link for suggestions).
  3. It's possible Ava might get discharged before next Monday, but I'll let you know if a meal is no longer needed on your sign-up day. Thanks for your flexibility.
Ava should be able to go home on hospital pass to celebrate Thanksgiving dinner with family on Thursday, so thanks for your prayers for that to be happen without any unforeseen hiccups.

Thanks for your continued support and love for the Lee family!

Friday, November 4, 2016

Discharge!

You may already know from Esther's post on the Team Brighter Days page, but Ava has been discharged from the hospital! What an incredible blessing this is; the meal schedule has been temporarily suspended for now, but I'll let you know when the need arises again. Heart-filled thanks to all who signed up, provided and delivered meals for the Lees. Please continue to pray for Ava and Esther during this critical time of preparing for transplant. Ava will get another bone marrow biopsy and the results will determine whether she is still a candidate for transplant. Thank you for your faithful prayers! You are helping to make news headlines! The Lord is good.

Tuesday, November 1, 2016

The Brightest Day Awards: Our Neighbors

We are still in the battle. Not a soul except God knows how this will turn out. But why not get the award ceremony going a bit early?

Let's call it, "The Brightest Day Awards." It's based on the middle names of our girls: Ava BRIGHT and Gwenyth DAY.

Because these are the people who, through their ongoing friendship with us, have turned a rough experience of ours into the Brightest Day we could possibly have. Just a few comments before the award ceremony begins:

1) These awards are purely subjective, based on no scientific criteria. I just want to put certain people at ease, you know the kind of Christian who says, "I don't want any rewards on earth because then I won't get them in heaven. So please don't thank me, don't acknowledge me, don't give me any credit because then God won't give me any credit." [a very kind and gentle sounding] Hahahaha! If that's YOU, stop trying to cheat the system! Besides, let's say we never thank you, never appreciate you, and completely ignore you for what you've done for us on earth. Yes God WILL reward you. But who is going to stop us from finding you in heaven and thanking you anyway? How sure are you that we won't be able to feed you grapes in heaven, with our three kids fanning you with a semi-slow breeze on a hot day? So if we WILL BE thanking you in heaven, how different is that from thanking you on earth?? So take it easy. Let me and my family, and everyone who knows us say, "THANK YOU!" You can stop averting your eyes and keep reading, People!

All kidding aside, there have been hundreds of people - we couldn't keep count. So many people have done so many different things for us. But there is not a single soul of any of them who is "trying to do a good deed," you know - to feel good about themselves or to be recognized in any way. Maybe a family with a sick child draws out the best people on earth. But I just want you to know that these awards are an attempt to capture the spirit of the people who have helped us. They describe what cannot be put into words, so we call them the Brightest Day Awards. It's therefore purely subjective without any standard of criteria.

2) The ceremony may never come to an end. As long as we're here, no matter what happens. This is the one constant piece throughout our journey. It's been UP for us as well as it's been DOWN, but the people surrounding us have stayed the same - reminding us of God's presence and grace. So we'll keep "handing" these awards out maybe monthly, weekly, hourly - whenever we can. It's an attempt to release the tension that exists from being broken and unable to keep up with everyone who has blessed us. 

3) Unlike common award ceremonies, it may be a challenge to identify the recipients of this reward. No one's walking up on stage and getting their pictures taken! Names will rarely be used. Part of that is a protection of people's privacy and especially to keep people from being squeamish when they're singled out. But recipients WILL KNOW who they are, because they'll be notified of having won the award. (Someone from the Brightest Day team will make a personal call or send a card - and invite them to visit this blog.) We do hope most recipients will have at least a small circle of people who are able to say, "I know them!" and give a virtual applause.

Okay, here we go. For the VERY FIRST Brightest Day Award, it goes to...

Our Neighbors!

It had been just six months since we moved into our home, and I'm not sure how our neighbors found out that Ava was diagnosed with leukemia. But I know their hearts sank, and they somehow knew what might help. In Seattle, someone came to visit us in the hospital. It was a woman who lost one of her children to neuroblastoma many years ago. She is our neighbor's best friend, who happens to live in Seattle and would often come to the hospital to cheer us on. Our neighbor found a way to keep being a neighbor during our darkest times. From there, when we were away for months on end, our neighbors collected our mail, mowed our lawn, parked his marked car in our driveway (our neighbor is a Cook County Sheriff) to further protect our empty home from opportunistic vandalism, and many, many other things. They pretty much kept our home from the things that could happen even if we were home, such as the pipes freezing and bursting, weeds spreading everywhere, stale air breeding mold on the walls... They did a complete landscaping of the front and back lawns, which were being terrorized I think by an invasive species from Venus. Interplanetary moss and shrubs can no longer return. A HUGE job that was. They loved and cared for our dog, making him feel like a king, taking care of all his needs and even giving him a new best friend by taking in a rescue puppy so that he'd have a social life. One of our neighbor's sons is a firefighter, whose crew came in and helped rearrange all the heavy furniture in our house before we came home from Seattle. Another son is a musician who will probably be famous one day but is willing to spend every weekend mowing our lawn before I can get to it - that's all throughout the summer and fall when we've BEEN HOME - right now even when I've been perfectly able to do it! Their 3rd son is away in college, who has tons of friends that sometimes have parties in their backyard. They talk to Gwen and give her something to look forward to, which is to have lots of friends who are good people and make a neighborhood come alive. It's great to be surrounded by such wonderful neighbors. You don't have to live with the sense that, if you had to defend yourself from the many threatening things out there in this world, you'd be all alone. With our neighbors, we believe that if anyone or anything were to come against us, they'd have to face some strong people first - they'd have to get past a circle of true patriots who know what they're doing and will fight and defend us with everything they have. We love our neighbors - they're the kind that we wish everyone had, the kind we aspire to be. They're the neighbors that make what you do more effective, like when you try and have the kids run a lemonade stand, they boost the sales. When you're looking for the best place to enjoy the fireworks, they save you a spot. When you wonder if your block is going to have anything to be proud of when it's Halloween or Christmas, their property has things going on that make up for everyone else's. So much kindness, strength, and dedication poured into our feeble lives.

That's Our Neighbors. This very first Brightest Day Award goes to you!

Wednesday, October 12, 2016

AML Research

Esther recently posted a video on Team Brighter Days that she helped with, highlighting the need for AML research for pediatric cancer patients. Most of you have probably seen it already, but I wanted to also add it here to the blog. There are no overhead costs, so 100% of donations go toward research. Thanks for watching, and for your continual support of the Lee family through a myriad of ways!





Saturday, October 1, 2016

Feeling Better!

Ava has been feeling so much better and has been more herself! She still has some GI pain even with a basal amount of pain medication, but she hasn’t needed the additional pain meds like she did before, which is great.

The LP results came back clear (hooray!), so Ava doesn’t need to get any more lumbar punctures or CNS chemo this round. Her GI biopsy results also showed no bacterial/viral infection causing her pain, so it’s possible these are side effects from her previous chemo... Ava started getting a tiny amount of food in her tube feeds (she's still mainly getting IV nutrition). Please pray that she'll be able to digest more food on her own without incident.

Ava is scheduled to get a PET scan next week to evaluate the efficacy of this round of chemo. If the results are clear (no tumors/cancer), then they will start prepping Esther for the haploidentical transplant as it takes two weeks to get her prepared as a donor. Thanks for persevering in prayer for full healing while trusting in the Lord with whatever will come.

P.S. Ava was switched to another room today, which is great! It's about 30-40% larger than her previous room, and when you've been staying in the same hospital room for weeks like Ava and Esther have, more room is a big deal!



Wednesday, September 28, 2016

Meal Schedule Updated Link

Thank you all for your overwhelming support in providing the Lees with meals! The meal signup and list of delivery volunteers has now been merged into the same Google spreadsheet for convenience and efficiency, so please refer to that instead of the TakeThemAMeal website. The links have been updated to reflect this change on the "Ways to Help" and "Meal Schedule" pages on this blog as well.

Thanks!


Thursday, September 22, 2016

Ava had a more active day yesterday, with visits from different services/disciplines in the hospital. She wasn't really up and about today and is still experiencing terrible stomach pains. The cause of her pain is still unclear. She threw up a few times today, which isn't helping her nutrition/weight. It seems the mere act of being upright is causing her nausea, so she's more inclined to stay in bed and not want to do much.

The good news is that Ava's last LP a few days ago didn't show sign of disease! (Apparently, she's had two LPs that were negative for disease since the initial one that showed relapse). Ava has another LP scheduled for tomorrow (Friday), and if that remains negative, then she won't need to have any more LPs done this treatment. Hooray!

Thanks for praying for:

  • resolution of GI pain and nausea
  • weight gain/keeping food down
  • increased activity/strengthening
  • healing and effective preparation for whatever God has in store next
Thanks for all your prayers and support!

Wednesday, September 21, 2016

Chemo is Finished

Ava's last day of chemo was today with her one dose of Mylotarg. She also had another LP (lumbar puncture). Today was another mostly sleeping day; Ava's been having a lot of GI pain again which they are thinking might be due to the stents she has in her ureters.  :( Pain meds may need to be adjusted again. Ava's muscles have atrophied quite a bit with all the time she's spent in bed, so she feels too weak to get up and walk (plus it hurts), even though that's what she needs to do to help rebuild her muscles. Ava's cold sores seem to be holding steady for now - they're not spreading any more - thanks for praying that they will not cause any problems while she is immunosuppressed.

Gwen will get to play hooky from school tomorrow (Wed) because she's really missing mommy whom she hasn't seen in 2 days. Attempts to Facetime with the kids often doesn't work properly because WiFi in the room isn't all that great or reliable.

They are saying that it might take 4-6 weeks for Ava's counts to recover, so Ava may remain in the hospital a good while longer. Please pray:

  • For this round of chemo to be effective - MRD negative!
  • For Ava's GI pain to resolved
  • For Ava's ability to ambulate, gradually rebuilding her muscles
  • For Gwen and Jude as they deal with transition, and for Esther's parents who tirelessly give of themselves for the kids/family
  • For Mike & Esther: wisdom, patience, perseverance and peace around treatment decisions, caring for the kids, commuting between Milwaukee & home; physical and spiritual rest.
  • For continued faith and surrender to God's plans, whatever they are, resting in His unfailing love.
  • For God to be glorified always!
The meal schedule has been extended through October, but let's pray that Ava will be out of the hospital before then! Please read the meal schedule instructions carefully, as some changes have been made.

Thanks for your prayers and loving support!


Monday, September 19, 2016

Chemo - Almost Done

Ava's last day of chemo (Mylotarg) is tomorrow. She's been vomiting the past few days, possibly from the mitoxantrone. Ava usually feels better after vomiting, but she's lost a lot of weight in the past week or so. This round of chemo is pretty intense, wiping out her counts as planned. Her cold sores have returned and are spreading, so your prayers for that virus to be contained/controlled are greatly appreciated! Ava will need to remain hospitalized until her counts start to recover/climb back up. She's on some meds that are making her tired, so today has mostly been a sleeping day.

Thanks for your prayers!

Meals on Wheels Delivery Help

Milwaukee people: I don't know how many of you are out there, but I know there are several! :) There are many people ordering meals for the Lee family remotely, but we could really use local people to help pickup/deliver to the hospital if you are able. This will open up more food/restaurant options for the Lee family. I will post a list of suggested local restaurants later tonight for out-of-towners to order from, but If you are able/willing to help deliver a meal for the Lee family, please sign up here. This info has also been added to the "Meal Schedule" and "Ways to Help" pages.

Feel free to share the link with any other local Milwaukee folk! Thanks in advance!