Monday, January 19, 2015

Day 59 and some help needed

The Lees survived their week of clinic and various doctor appointments last week, and have had a few days' reprieve this weekend. Ava returns to clinic tomorrow.

You probably have a pretty good idea of the gamut of emotions a cancer journey brings, as you follow along and come alongside the Lee family. Even still, it's hard to convey all the things that well up within the heart of a parent who watches his/her child battle such a fierce opponent as cancer. There are many joys and sorrows along the way, victories and setbacks. There are days where you feel cancer will overwhelm you and crush your spirit, and then other days you find renewed resolve to beat this thing. One of the hardest things about cancer is that you never really know if and when you've "beaten" it. Yes, biopsies are done to see if there is any cancer detected, yet the results are only as good as the tests can detect. Years ago, "remission" was at a much different place than remission today. Test back then weren't as sophisticated as they are today, and we can only imagine that years from now they will get even more specific and/or sensitive.

The reality is that cancer is like a silent thief, lurking in the shadows, ready to steal your joy and very life at a moment's notice. Even if you hear the glorious words: "remission" or "MRD negative", you know in the back of your mind that there's always the possibility for cancer's return, and you have no idea when that might be... months down the road? many years from now?

Cancer permanently changes you, to be sure. You celebrate the little joys in life with greater fervor. You have a new perspective on life that you wouldn't and couldn't have had without cancer. You realize that many things that consumed your life prior to cancer really don't have great significance in the grand scheme of things. You appreciate the little things in life much more. Other times, you find yourself overwhelmed and unprepared to fully enjoy the little things in life, and worry that you're missing out on savoring the moments, not knowing how many more you'll have. Even if Ava is able to return to a 'normal' life, where her hair grows back and she looks more like herself, where she can attend school again (in a year or so), be around people and enjoy the things she used to, there will always be the awareness that cancer is lurking in the shadows. That's not meant to be pessimistic; it's just a reality. It's hard to even communicate this, at the risk of sounding ungrateful for all that God has already done. We are deeply thankful to God, rejoicing in His work and giving Him all glory for His faithfulness. We know He is good, and we know that He holds the future, that we can rest in His hands and trust His heart. Cancer doesn't keep us from holding on to hope in Christ, and we continue to lift up our eyes to the hills (Psalm 121). But we also know that all too often, families hear the dreaded word: relapse. And should that happen, His grace will be sufficient, as it has been already. God will provide. He will help us through.

It's hard to believe that it hasn't yet been a year since Ava's diagnosis. God has shown Himself to be incredibly faithful throughout. There are countless ways He has revealed His grace, mercy, love and peace. His loving hand cannot be denied. Even now, we recognize that Ava's current status is a result of His doing. We marvel at the fact that she engrafted within two weeks and is MRD negative! She's been doing remarkably well overall, despite having more difficult GVHD. She's out of the hospital and ready for a baby brother. But as you saw in Esther's previous post, the effects of cancer remain apparent. Ava still feels self-conscious about her appearance, even around family. There's the need to be vigilant about germs, avoiding crowds and essentially not really going anywhere. There are multiple medications to take, side effects and toxicities to look out for, and follow-up visits to make. But the medical care at Seattle has shown itself to be top-notch. The level of compassion and care from each of the healthcare professionals has been an overwhelming blessing. The generosity of others has deeply impacted their lives both tangibly and intangibly.

Being in Seattle itself has been a blessing as well, even despite being away from friends and family. I doubt Mike and Esther miss any of the cold temps that Chicago has experienced - they gladly accept 50s and 60s rainy weather instead of the below zero windchills! It's been great to be close to the hospital, not making any of the long trips back and forth to Lurie's. They're also removed from the major flu/viral illnesses that has really hit the midwest hard this year. (Just to illustrate: a couple months ago, one of our kids' schools had 100 students absent two days in a row! And another suburban school had a hazmat team come in and disinfect the place after there was some type of norovirus outbreak...) We're so glad for the Lee family to miss out on these things!

Some prayer requests:

  • For continued health of the family - Mike's parents are in town to help. Unfortunately, Mike's dad is sick so he has kept distance from the family. Please pray for full recovery. But praise God! It turns out that he is getting over the bocavirus, which the doctors consider to be the best-case scenario; apparently they feel more confident about helping Ava through her symptoms should she get the bocavirus. In contrast, RSV or the flu could be detrimental and even fatal, so the family needs to remain on high-alert to germ exposure and be vigilant about hand-washing and general hygiene. It's super important that they themselves avoid contact with sick people, since any one of them could be incubating something without knowing it.
  • For smooth delivery of Baby Lee - There are a number of logistics involved in having a baby out-of-town while caring for two children, one with cancer. Really, this is a bunch of prayer requests rolled into one. Please pray for continued health for Mike's mom, who will be caring for the girls when Esther goes into labor. Please pray for Ava's health, for no complications, setbacks, etc. Pray for Mike, who will likely juggle being at the hospital for the delivery and giving Ava her meds/taking care of any other medically-related care Ava will need. Please pray for health for Esther and the baby, for TLC for Gwen so she doesn't feel lost in the shuffle (and please pray for her skin to be under control).
Some needed items: The Lees could use a couple things; if any local Seattle people are able to loan them the following, please let me know! You can email me at: naisula (at) gmail (dot) com.  I will also add these things to the Seattle Info page for easy reference. As a reminder, the Lees' mailing address and Ava's new email address are posted on that page as well.

  • Two booster chairs - Ava and Gwen could use a little boost when eating/sitting at the table. If you have any booster cushions or chairs to lend them, let me know.
  • Slow cooker - It may be handy to prepare slow cooker meals on days when they may be at clinic all day. It would be an extra bonus if you happen to have any of those disposable slow cooker liners for easy clean-up! Thank you, these items have been taken care of!

Thank you in advance for your help and faithful prayers!

1 comment:

Yaoe Wampler said...

Yes, we will pray for all of you !God is awesome God! God is delivery God! God is recovery God! God is healing God! God can do everything for your family and us! Praise Lord! Thanks Lord!