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I Cannot ...


So we met with the doctors yesterday at 3:00 PM. Their analysis is as follows:

#1 His marrow is still aplastic 45 days out from chemo.
Even if it started coming back in today he still wouldn't have full marrow recovery until 60 days.
And the longer it takes, the higher the probability that he will not have full marrow recovery ever.

#2 His other organs (liver, gut, brain, heart) are all slowly deteriorating from the stress of no white cells.
They do not think they will last / recover (especially gut) until his marrow finally recovers (which may not).

#3 He still has CNS leukemia - last tap showed 1 nucleated cell, but after several months of taps/intrathecal chemo and his brain issues (7/18 - 7/21) they are hesitant to do more spinal taps.
They could install a reservoir in his head to do the taps/CNS chemo, but would that be worth it? (How many more taps would Jaymun get anyway, since they all feel what he really needs is CNS radiation to clear that area of cancer?)

#4 But now they think that CNS radiation is no longer an option because
a. It will damage/suppress his unrecovered marrow too much and
b. It will also hurt his gut - quite damaged already from 2-CDA and Idarubacin which was short on the heels of high-dose Ara-C. There is a functional ileus (standing liquid in his intestines without any solid blockage) so that means the intestines are hardly moving. The bulk of his pain is coming from a tummy that is one mass of hurt (he was vomiting blood clots).

#5 So since they think...

His gut will not recover without his marrow,
and His marrow won't recover in time for his gut,
and without radiation, the CNS leukemia will be right behind,

...They believe he will die.

Within weeks.

Jennifer and I explained this to the rest of the children last night. It grew very quiet. Then after about a minute, Devon said with wide eyes "What about another transplant?" So I gave him the answer the doctors gave me - that giving Jaymun a boost of cells from Devon would carry risks for Jaymun also - increased GVH risks and inflamation risks as his cells would come in faster than the rest of his body could handle. Devon said "Well at least it is something to try, right?" So I replied that the doctors thought it would be too dangerous. Even Devon is now learning the limits of our power.

Jennifer and I both asked the doctors for their advice, they said "Make him comfortable, and pray."
Praying came up several times during that conversation.
It seems like we have run out of ammunition, run out of fuel, run out of game plans - you pick the metaphor.

I am not sure where we are right now. I cannot look into Jaymun's body and know what is wrong, and what is best to do. I spent countless hours the past months researching things that in hindsight I wish I had been giving him from the beginning. Herbs that good research promises to have activated his NK cells, soothed his stomach, helped his GI heal, protected his liver, fought the root of the cancer, boosted the effectiveness of radiation, even helped his marrow come back faster. Even so, I cannot tell exactly the correct sequence or dosage especially if his gut is ruined.

I could blame myself for laziness when all along I was taught better. I could waste time railing at the haughtiness of American medical science for squandering years of time on other drugs while other countries championed natural research. I could be quite annoyed at the inability of traditional doctors to assist me in that direction although at first I practially begged them, but what good would that do now for Jaymun? They sincerely offered what they had as the only best. And here at CHW it was. I doubt we would even be here today without the heroic efforts of the staff in this place.
I cannot change what happened.

Right now, as I write this post, we are sitting in the quiet playroom with the wide windows
watching the sun rise over the trees, houses, and skyline of Milwaukee WI.
There are a million people I cannot see, waking up to persue their lives
...oblivious to the struggling little boy tucked into his wagon above them in the fifth floor corner.
Looking down at Jaymun sleeping peacefully beside me
...there are a million cells I cannot find battling for survival and recovery in his body.
Inside the hearts of our family are a million pains I cannot utter,
for who is able to chronicle the toll cancer and treatment has taken on his body and our lives?
My task of love in these hours is to constantly decide for Jaymun which cry is childish annoyance, which cry is hunger or normal bodily function, and which cry is unavoidable pain worthy of pushing the morphine button.

All this suffering of Jaymun's is writing its own story in our hearts. I asked the doctors yesterday, wistfully, is there any way that we will have our son home again, running around outside? ...and the sad looks told me I cannot plan for that to ever happen. I am running out of analytical and practical work to hide that pain behind.

But in a moment like this, when I see the sun rising above the city, and feel our Father gazing down upon us, just as I look down upon Jaymun, I remember the words of Jesus:

Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered.
So don't be afraid; you are worth more than many sparrows." Matthew 10:29-30

If I cannot count the hurts to our dear son, and the pain in our own hearts, there is One far more tender Who cares infinitely more, Who feels each bowel pang, counts each jagged breath.

And no matter how I might mask the hurt from others, I remember the words of the old Psalm writer:

Whither shall I go from thy spirit? or whither shall I flee from thy presence? Psalm 139:7

That is undescribable, humbling, intimate, fierce, overwhelming communication,
because from the God to whom Jaymun and I are worth more than many sparrows

...from Him the deepest haunting hurts and heart despairs, sins, failures, and helplessness,
the raw need for comfort, healing, love, and deliverance

...I cannot hide.