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!



Wednesday, September 14, 2016

CNS Relapse

Official LP results confirm that Ava has CNS relapse, meaning that the cancer indeed returned to her CNS system. I don't believe the treatment plan changes any, it just reveals how aggressive her cancer is, and what a grave situation Ava is as she receives this next round of chemo. The treatment has that much more disease to eradicate in order to get her into transplant position. Thanks for your unceasing prayers.


Meal Schedule Update 2

Thanks for the amazing meal train support! Some more information has been added to the meal sign up. Here are the highlights:
  • If you are ordering a meal remotely to have it delivered, please let Esther or Mike know if you have included tip for the delivery person. Otherwise, they will be prepared to tip the person upon receipt of the food. (Sometimes the delivery person may be unaware that tip was already included and expect to be tipped again).
  • If you decide to order a meal through the website (TakeThemAMeal.com), know that meals are shipped frozen via FedEx; they strongly advise against shipping directly to the hospital, as the hospital typically isn't equipped to allow recipients to heat up the food (e.g. use a stove or oven). Moreover, hospital processing of mail/packages for individual patients may be slower than desired. Instead, you can ship these frozen meals to Liz Woo McCabe, whose address is listed in the meal sign-up details. She will take care of heating/delivering the meals to the Lee family. Thanks, Liz!

* If you already ordered a meal through TakeThemAMeal.com,
don't worry, your food has already been rerouted to ship to Liz instead.

Liz has also graciously offered to pick up and deliver any meals ordered by people out-of-town. This opens up more restaurant options, as not every place is in delivery range of the hospital. For your convenience, we are working on a list of area restaurants to choose from and we will post that as soon as we have it ready. Thanks for your patience and support!


Tuesday, September 13, 2016

Ava is getting a lumbar puncture today (not sure if it finished yet), so we will find out if she has any cancer in her CNS. Prayers for a clear report are appreciated!

They are working on Ava's pain management as well, and the plan is to start chemo today. (For those who are interested, she will receive high dose Ara-C for the next 3 days, followed by mitoxantrone and Mylotarg). Praying that the chemo will be effective in eradicating disease.

Thank you so much for the outpouring of love and support you continue to give the Lee family. Many of you have reached to offer various ways of help, and we are so blessed and humbled by your generosity as we sort through what the Lee family could best use right now.

At this time, we would like to limit visitors to just family/extended family and close friends. If you are dropping off a meal, thank you so much! However, please understand that Mike and Esther will not be able to stop and visit with you, as they'd like to give as much time and attention to Ava as possible. This isn't in response to anyone who has already delivered a meal, this request is just for future reference! :) Ava's been in so much discomfort lately that they also want to protect her privacy as it's hard to be so vulnerable in front of others. Thank you in advance for your patience and understanding, and know that they are so grateful for your support even if they are unable to communicate that personally!

Update:
Ava's preliminary LP results suggest that there is no CNS relapse. Woohoo! That's great news! Official results pending.


Monday, September 12, 2016

Meal Schedule Update

I spoke with the hospital and confirmed procedure for delivering food. Information is updated on the Meal Schedule link. Still gathering other info as we go along, so if other needs arise, I'll share them.

Thanks for your continued prayers! Ava is currently getting an ECHO test done, not sure what else.

By the way, they were in wonderful disbelief at how amazing the house looked when they got home this morning. They are SO appreciative to everyone who helped make it a loving, clean home to come home to. For those who were unable to help (or were pre-empted by the crew that finished so quickly), know that your prayers and love for them are just as appreciated. Thank you! Not sure what the medical plan is at this point from the consult, but your continual prayers are appreciated.




En route to Milwaukee

The Lee's are on their way to Milwaukee, they shall hopefully arrive sometime soon. Ava continues to be in persistent discomfort and crying out from the pain. They'll need to consult with the medical team today and get some baseline tests done, not sure how soon they can start chemo - maybe tomorrow or Wednesday?? Thanks for your prayers for continued wisdom, guidance, smooth and effective communication among all parties involved, and peace.


Milwaukee Meal Schedule

A meal schedule has been created for the Lee family while they are in Milwaukee. Still confirming some info (e.g. where to deliver the meals), but wanted to get something up in the meantime. Thanks for being flexible, and for supporting the Lees!

This information has also been added to the "Meal Schedule" page for easy reference.