One more thing...

Krista is still with us though it is getting more difficult each day. Many people have been writing notes to her and we wanted you all to know that she is receiving them and is so grateful for the immense love. Please feel free to continue doing so, and we encourage you to send notes to jandcgrant@aol.com to make sure they get read to her as soon as possible. Thanks!

Preparing For Heaven

The past few days we have not had much communication about our status because things have changed in very significant ways.  Krista's levels of pain became excruciating to the point that she felt like it was torture.  The pneumonia diagnosis was that it was neither bacterial nor fungal, most likely a virus which is very difficult to treat, especially with the unfunctional immune system left by the ever increasing leukemia. After reviewing her options, Krista made the decision that she wanted to go home under hospice care to enjoy her remaining days in the company of her family, kept comfortable under the extensive pain control they are allowed to do that hospitals aren't.  She is extremely happy about this whole thing, because the other alternatives were going to be awful for her.

Hospice care means that she is no longer being treated for her ailments, but they are helping her through the symptoms, especially the pain.  They have been very effective, so she is currently comfortable, though very weak and frail.  Since she is not getting treatments (including blood transfusions), we can make some rough guesses as to how long she has left with us, and it doesn't seem to be very long.  She is loosing red blood and platelets at a steady rate, so at this point we may have only days to a week left.  She was quite pale and not breathing regularly last night, so I was not going to be surprised if we lost her overnight.  Fortunately, this was not the case but she has the sense that it's not too far.

She has been reading a book by Randy Alcorn called Heaven, since she wants to know as much as she can about where she's going.  It's a very good perspective completely taken from the pages of the Bible rather than people's experiences, mythologies, or other less reputable sources.  God is the real expert on the subject, so I trust His revelation of what it's like more than any other source.  If you have any questions about heaven, I highly recommend that resource.  

I mentioned that book because there was a funny incident that happened last night that expresses so much of Krista's heart.  I had purchased the audiobook version of it because her reading ability is fading, but there's been so much going on that she hasn't had time to listen to it.  I played it for her last night while she slept without her knowing.  There was a startling noise in the middle of the night that woke her, though she was still in a partial dream state.  She heard the descriptions of some of the areas of heaven and, feeling disoriented, she said, "Where am I?  Is this heaven?  It seems like an airplane terminal.  This is boring!"  She was so disappointed that she wasn't already in heaven! Needless to say, that is not what heaven is like (and wasn't a judgement on the quality of the audiobook either).  We are glad to have some more time with here here.

This is a very difficult time between Krista's weakness, making sure that the kids are prepared, and making arrangements for when she passes.  Because of all this, we are going to need to back off direct communications with people and have a dear friend of our's, Catherine Grant, make limited private arrangements on our behalf.  You can email her at jandcgrant@aol.com if you have any questions.  Our family intensely appreciates the outpouring of love we have received from family and friends, but this is a very private time for our family.  Please do not be offended that we are not generally accepting visitors at this time. There will be a wonderful memorial service that Krista is helping to plan to remember good times and celebrate life that we will invite everyone to participate in when the time comes. You may contact Catherine if you would like to help out with that service. We love you all!

Miserable

The past few days have been miserable for Krista -- really painful. It is an all over body pain somewhat radiating from her chest. The pain meds give only very brief relief, and we started working with palitive care to find better options. 

Our best guess right now is that the pain is bone pain from an overactive white blood production. Her body is trying to fight off the infections, but is producing ineffective leukemia cells instead. 

There's conflicting needs for her to make progress. The infectious disease doctor says he needs a working immune system to get her better, otherwise all he can do is stabilize her. To get her immune system working again, though, we need to start cancer treatment.  But all of the cancer options take far too long and are far too strong to be a viable option. 

The best bet is to identify the specific infection in her lungs since there are other antibiotic and antifungal options that target specific germs. She's going right now to get samples taken out of her lungs with a bronchoscope. The procedure only takes about 10 minutes but the cultures will take longer. 

Krista is really looking forward to the procedure because they will be heavily sedating her. That feels like an escape from the constant pain that she's been dealing with.  Hopefully the palliative care team can come up with a better solution, because pain control is the first priority now. 

Lord, I wait for you;

you will answer, Lord my God. 

For I said, “Do not let them gloat

or exalt themselves over me when my feet slip.” 

For I am about to fall,

and my pain is ever with me. 

(Psalm 38:15-17)

Life Changes Quickly

This post is a long time in the making.  At the beginning of September, I wrote almost finished posts in the middle of a sleepless night only to fall asleep and come back to a blank page -- three times....ugh!!!

At the time, there was no set plan for treatment, even though it had been 3 weeks since my relapse. Since then we learned that active GVHD has disqualified me for most clinical trials, but that there are two low-dose chemo agents, Dacogen and Vivaza, which can be administered. Both are given as an outpatient treatment over five to seven days. Nausea, diarrhea and joint pain are common with these.  The good news is that they are starting up a new clinical trial in a few months that I am a candidate for that targets a CD33 receptor that my leukemia has!  The hope is that a few rounds of Dacogen will get

Even back in early September when I wrote those missing posts, my hemoglobin was stable around 10, but my platelets were dropping 10-20k a week and I was going to need to be transfused soon. I remember how my body used to burn them up as soon as I got them if they couldn't get HLA-matched platelets, so that adds some delays to the process. It delayed so much as to feel like nothing was happening!  I needed to get a port put in to stop the incessant needle poking, but couldn't until platelets were given. There's always a shortage of platelets, so I encourage you to ask about donating platelets in addition to red blood.

Tuesday night this week, I started to feel chills after dinner.  It didn't seem like a big problem until Mike noticed that my speech turned into a very unusual and unprompted silliness.  When he took my temperature it was 105 degrees!  I was taken to the hospital where they discovered that I had pneumonia, a urinary tract infection, another bladder infection, a systemic staff infection and was heading toward septic shock.  I was in the ICU for a couple of days trying to get my blood pressure back up, and just as they upgraded me to the regular hospital, the chills and fever returned.  My blood pressure hasn't been as much of a problem, but the fevers have been up and down daily.  This is really bad, since they are throwing their strongest 3-4 antibiotics and a really strong antifungal at me, yet the x-rays are showing that the fungal pneumonia is progressing.

At least I was able to get a picc line put in (instead of the port which would have been too risky), and received a transfusion of platelets (2 bags) and 2 units of red blood which seems to have worked well.  My platelets were down to 15k before the transfusion, and the next day they were at 50k.  This is supposed to be good enough to be able to get a bronchioscope in to sample the pneumonia in her lungs, which they may have to do early next week, but it's still very low compared to the normal minimum of 150k.

They cannot start treating the leukemia until the pneumonia is knocked out.  My white blood count has been low and is starting to drop.  They changed the labs to start to differentiate the white blood count so that they can tell if this is because the leukemia is becoming more active.

The situation is quite serious right now, and it is difficult for me to feel like I'm going to make it through all this.  Mike, though, reminds me regularly that the doctors have given up on me before and were wrong.  Whatever the outcome, we know that God should get the glory.  All healing that we receive on this side of heaven is a temporary dose of grace; ultimate healing belongs to the resurrection at the end of days.  I want so much to stay here to finish what I've started, though, especially in regards to my kids!

"Show me, LORD, my life's end and the number of my days; let me know how fleeting my life is."--Psalm 39:4