Tonight

Went with Bob to see doc…says all looks good. Kidneys fared well through transplant. Doc will call us with 24 hour urine results, we are expecting to see good results. Bob really just needs to recover his energy. His appetite is better, his kidneys are better, his blood counts are better….just needs to have energy. That will come.

Went with mom to doc…he came into the room and started with, “I spoke with Dr. Matous (does anyone else think its weird that mom’s doctor is talking to Bob’s doctor?), and he says there’s no standard treatment that you haven’t already had. He thinks you should make an appointment with Dr. Maris downtown at the transplant office to discuss some studies that he is involved in. They’ve got some new treatment regimes that are promising. They might just have the next home run for AML.”.
Mom responded with, “I think I’d like to take some time off.”
Doc says, “Okay…well why don’t we draw blood first and see what it says? Then if you want to wait a bit….do you think you are feeling better? Do you think the chemo IS working?”
“I think God is in control” mom was pretty confident, “and a few weeks ago, I was very sick. When my white cells were up around 70,000…I was sick. And now I’m better. Something happened and I’m better.”
The doctor agreed with her. She told him, something was making her better….or she’d be dead.
The doctor agreed again.
The doctor asked if she was better every day, mom said yes! He then asked if we agreed with her. And the miracle — dad said, “She is 100% better”. Wow. Dad spoke life!

So the doc ended with, “How about you get blood drawn and if it’s not worse, we will just schedule a visit for next week. Then we can discuss treatment or a visit with Dr. Maris. And it’s always your call- if you want to quit treatment completely, you can.” Blood results were exactly same as last week. No worse.

So we are praying that by next week they are better. And this walk away from chemo, away from treatment, becomes easier. Because mom is convinced that she is healed. She doesn’t want any more chemo. It would be nice to see the blood results line up with our faith now.

Holy Week

Today is good Friday. The day we remember the sacrifice that Jesus made for us. It’s also Passover. The day we celebrate the angel of death passing over us. Holy week. Holy. Weak.

Mom: we have been entering into a place of worship and prayer that is familiar to us. The battle waged in the middle of a song of praise. We lift our hands up, we lift our eyes up, we take our eyes off of symptoms and the physical and blood test results, and we place our eyes on our God. We draw near to Him, and He draws near to us, and He comforts us.
I have to remember that this walk of faith is not an easy one. Just because I believe God is our healer, and He is above our circumstances…does not make it easy. Sometimes the challenge is just in keeping my eyes fixed on him. So many other things jump up and down and compete for our attention. But we will keep our eyes above it all, and on Him.

Bob: we saw Dr. M yesterday. Bob’s platelets are starting to increase…he’s making his own again. Still low, but going up. His Red cells are still really low, he got a growth factor shot to help boost them. We will see the doc again Tuesday and if he’s still low he will get blood. Dr. M told us that the cancer marker test was not completely accurate. Said that he would still wait until 3 months from now to test for most accurate results. Just makes me laugh. Even when you get good news….they buffer it with “don’t get too excited yet”. But it’s okay, we weren’t celebrating yet anyway.

But we will. Yes, we will.

Aunt Julie died today. Mom is sad that she can’t be there to bury her.

Tuesday…I think

After being so acutely aware of what day it was, even following a calendar from day -3 to day + 18; it seems strange that I feel I’ve missed a few days and had to be told yesterday by Paula, “Kim, it’s Monday not Tuesday.”

Okay Shannon, here’s the update.

Saturday and Sunday we were at the hospital both days with mom. Fever, high white cells, high blasts (cancer cells), not feeling well, etc. The doctors were not entirely familiar with mom so they reacted appropriately and sent her through all the proper tests, and sent all of us through hell.

We haven’t left her and dad alone since the fevers on Saturday. We’ve gathered together around them every day and prayed for her. We’ve pleaded with God to take this cancer away. We’ve spoken to her body and anointed her with oil, telling cancer to leave. We’ve read aloud from the bible and sent the Word of God into her telling her body to line up with the promises that it contains. We’ve kept worship music streaming through the house and praised God in the midst of this storm. We keep telling God we trust Him….we trust Him.

We are trying to keep everyone else updated…but maybe we’re not doing so well at that. Mike summed it up, “Kim I know you don’t want to speak negatively, but can you tell me if this is bad news?” (or something to that affect). Here’s what struck me in that moment: how do I tell them that this is very serious and could be very bad news…and still keep my eyes focused on God and believe whole-heatedly for this miracle? How do I separate the nurse in me and the crazy-faith-miracle-believing woman? As an oncology nurse I keep listening to the numbers and percentages and projecting a prognosis….NO. I will trust God. He is above cancer. His word tells me to believe in Him.

Monday morning she had another blood draw at her doctors office. The lab tech drew blood and told us to wait for results. She came out to us wide-eyed and said, “You’re going to have to wait here until the doctor sees those results. My machine won’t count it…it’s really wacky…I think your white count is really, really high.”

We ask how high. 40ish.

We say, ” Better than this weekend, we’ll take it”. Then we wait for instruction from the doctor. Is he going to send us to the hospital? Is he going to want to change chemo? We wait, and we pray. The RN comes out and tells us this is very serious, lots of blast cells, high white count, but if she’s feeling okay go home and come see the doc Tuesday at ten. Ok, back home. Everyone comes over and we pray again. We praise God for good news and we pray. We thank God that cancer is leaving her body.

Mom gets a call. Her 94 year old aunt that lives in St. Louis is dying. Mom and dad are the care-takers, but they can’t go home to be with her. Mom cries the rest of the afternoon….we call Mike to go support Aunt Julie and pray with her.

Tuesday…see doctor. He says, “what the heck?”. He doesn’t have any definitive answers about what is going on in her blood. He asks how mom feels. She tells him that she’s much better than this weekend. He tells her to come back tomorrow, since the blood counts seem to be coming down we’ll draw again tomorrow and hope for better results.

So again we wait. We wait and pray for better results, we trust God. They’re coming.

Oh, and Bob (cancer free Bob) is still recovering. Slowly, ever so slowly but he’s recovering. For the past two days laying on mom’s couch recovering.