Prayer Time

Jonah started acupuncture a few weeks ago.  Although we are now in the "Harmony" room, we started in "Hope" and it is to hope that we now cling.

Pray for our family.  Pray for peace, for hope and for courage.  Pray that love prevails in all our interactions and that each member of the family know how much they are cherished - by each other and by God.  

Pray for Noah, that in these weeks of waiting he doesn't put all the pieces together and start to carry the worry of the future himself.  

Pray for Anna.  She has yet to actually process fully Jonah's diagnosis and treatment and the impact that has had on our family.  Pray for ability to be open as she processes and resilient in whatever our family's future holds.

Pray for Julia, as most of her wold revolves around Jonah.  I fear that if something were to happen to Jonah that a piece of Julia may cease to exist.  Pray that her spark of sunshine be bright and joy-filled yet also that she grows up knowing that she has space to feel hard feelings.

Ok, tumor board has meet - they have looked at Jonah's imaging and put their heads together to come up with the best recommendation they could.  We had some folks at CHOP (Children's in Philly) offer their input as well, and the collective best that they could come up with is to rescan in about 6 weeks and also do an LP (lumbar puncture) at that time.  The MRI will of course tell us if this new spot is getting bigger, staying the same or is gone.  The LP will tell us if there are any cancer cells in Jonah's spinal fluid.  This is a short timeframe to scan, so a stable scan and a negative LP aren't diagnostic, but a growing spot and/or a positive LP are.

Basically we know exactly what we knew last week and not much more.  We are looking at rescanning 5/23.

Although we basically have gained no new knowledge, hearing it all again made it feel worse.  Maybe it's because there was a little less optimism in Dr. Lulla's voice.  Maybe it's because when I asked him the unfair question of what he thought the likelihood of this being recurrence he said he was 60-70% sure it might be.  Maybe it's because our hearts and minds have had a little time to engage in what it will mean if it is recurrence.  Whatever the reason, for today we are heartbroken.

You may remember, from long ago, that if medulloblastoma returns after radiation, there is no cure.  There are a few treatments that prolong life, but the focus becomes quality of life, not preservation.  For children, like Jonah, who were originally diagnosed with metastatic medulloblastoma - if the cancer recurs, the median life expectancy is about 1 year from recurrence diagnosis.  To get there, some form of "salvage chemotherapy" would have to be started.  Although this type of chemo is not as intense as what Jonah originally endured - it would likely bring back some level of nausea & vomiting, hair loss and the risk of neutropenic fevers.  The goal would be to avoid hospital admissions, maintain the best quality of life as possible and then in the end, make death as dignified and painless as possible.

We still do not know that this spot on Jonah's spine is recurrent disease.  There is still a chance that there is some other unknown, uncommon explanation for it.  But, even as we hold onto that hope, we are having to prepare ourselves for the chance that Jonah's story may be entering his final chapters, and therein lies our heartbreak.

Through this journey, many people have commented on the strength of faith that we have.  God has been so faithful to showing up in our lives in big and small ways over the last almost 2 years.  It is as a testament to God's faithfulness that I want to be able to pray, "Thy will be done", but I can't.  I am afraid that in a year that has already seen my dad die, my grandmother die, my mom be put into a nursing home and the selling her house that there might be even more hard ahead and right now I cannot willingly submit to it.  I am tired of the hard and want God's will to be certain healing.

Please join us in prayer in the next few weeks.  The big prayers are outlined below, but cancer changes everything for everyone, and so there are specific prayers listed above as well.

* Pray that our 5/23 MRI is clear.  Pray that the medical team is left scratching their heads as to what the spot was and we can proclaim the healing power of Christ.

* Pray for the days leading up to 5/23 that we are able to live with hearts wide open, without fear and anxiety robbing us of the joy of each day.

* Pray for Jonah - that he keeps his silly, loving, open, warm spirit.  Pray that there is no change to his health or strength and that he doesn't feel singled out in any way as we encourage him to keep living big.

* Pray for my heart.  We don't know the outcome yet, but there has already been so much grief and sadness this year for my family.  Pray for strength to find hope and seek the goodness of God even on the darkest days.  I'm not a great waiter and expect this to be a long few weeks.

* Pray for me, as I am slated to speak at a pediatric cancer fundraiser gala 5/20 (let me know if you're interested in attending and I can hook you up with the info), and although I can write the very hard things, saying them out loud is much harder.


As a side note - as we have nothing definitive to tell our children, we will not be saying anything to them right now.  Please do not discuss this with our children or when they are around.  They are smart kids, and with too many sorrow-filled glances and hushed conversations they will piece together that something is not right.  We do not what them to face undue worry with information that is not certain.  Thank you in advance for helping us in that effort.