Tuesday, June 14, 2016

Very Sick

The Lee family has made it to Seattle. Thank you for your prayers! Mike, Esther, Ava & Jude arrived via medical charter on Sunday as you probably know from the Team Brighter Days Facebook page (remember, it's a public page accessible to everyone). Esther's parents arrived with Gwen Monday evening.

Ava is very sick. You know this, as her peripheral blasts went up to 18% on Sunday from 5% only the day before. Ava also has parainfluenza virus right now, which can result in a severe infection in immunocompromised patients. They're not sure if they saw a touch of pneumonia in Ava's lungs. Jude & Gwen are also sick, probably with the same virus, though their bodies fight it much more effectively than Ava's does.

Ava had a CT scan done earlier today (Monday). The CT showed more nodules, but the big question is: are they leukemic nodules, or are they from a fungal infection? Ava has already been on an antifungal for a while (just in case). But even so, a fungal infection would be serious and difficult to treat, especially with her weak immune system. Any chemo would further suppress her immune system which could exacerbate a fungal infection. In order to know for sure, they would need to biopsy one of the nodules, which would be an unpleasant, invasive procedure through her side. This would also require that one of the nodules is large enough to biopsy, which is unclear at this point.

So what are the treatment options for Ava's cancer? You've heard about Mylotarg as a key player and consideration in her treatment. Mylotarg itself is not chemo, but is given in conjunction with other chemotherapy agents. Mylotarg works best when disease levels are low. Chemo agents are used to bring the disease level down to a point where Mylotarg can do its "clean up" work. It is less effective when disease levels are high.

The real variables here are in the chemo agents used, and they are weighing the options:

1) most aggressive/intense regimen (Mylotarg + fludarabine + Ara-C): this is the treatment you've heard about, where it's so intense it would wipe out everything and put Ava in a severe state of immunosuppression. Ava would need to remain hospitalized for the duration of treatment/immunosuppression, which could be anywhere from 4-8 weeks.

2) "medium" intensity regimen (Mylotarg + cytarabine): this regimen results in immunosuppression for several weeks.

3) "light" regimen  (Mylotarg alone or with a hypomethylating agent).

You can imagine the factors that weigh into their considerations. The first option, while being most aggressive against Ava's cancer, also puts her at risk for other infections, especially with immunosuppression lasting so long. On the other hand, for Mylotarg to work most effectively, they need to get her disease level as low as possible. They would only consider the "light" regimen chemo if Ava had other factors/conditions that made the other options unavailable.

Ava's been on a lot of pain meds lately and also complains of a stomach ache, which could be something called typhlitis. Ava's pains may be due to chloromas; she also has a small pocket of fluid near her heart.

As it stands, Ava will get a lumbar puncture (LP) on Tuesday along with some injectable chemo. The plan is to start treatment (Mylotarg + chemo) on Wednesday no matter what, though they're not sure yet which regimen to use. There isn't much time to waste as Ava's cancer continues to spread, but there are important factors to consider in deciding on the best regimen.

Please pray for:
- a smooth LP on Tuesday
- God's wisdom and grace for the medical team regarding treatment plan
- absence of fungal infection
- effective pain relief for Ava
- rest, stamina and strength for the Lee family
- God's peace and presence to guide
- God's glory to be revealed unhindered throughout this journey
- comfort and peace for the whole Lee family, but especially for Ava, Gwen and Jude who are dealing with sickness and being apart from family in one form or another. Sick kids always want mama! Thank you to all who continue to love on Gwen and Jude.

Be sure to follow the Facebook page for any day-to-day updates in addition to this blog. We know that so many of you already (and continue) to pray for Ava daily, and there are a couple of prayer chains going. If you are interested in joining a prayer chain, you can sign up on this one for a 1-hour slot (note that the time zone is noted in PST).

As a reminder, the link to the Facebook page is also under "Ways to Help," where you can also find links for the prayer chain there and how to provide meals or other support for the Lee family. The Meal Schedule page has also been updated.

Your partnership has been invaluable. Thank you so much for walking with us. The Lord bless you for your sacrificial love.

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