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Sunday, September 27, 2015

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!

Friday, September 25, 2015

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!

Tuesday, September 22, 2015


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)

Sunday, September 20, 2015

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

Friday, August 21, 2015


"'Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.'” (Joshua 1:9)

Today has been a day of tears, as we just learned that Krista's leukemia has returned. She discovered that her blood counts were low last week when she went to the emergency room for a very unusual stomach attack that was brought on by a cough. We see in this that the Lord is still with us and that He was trying to get her to medical help through this strange malady (which the doctors could not explain).

The oncologist at City of Hope says that we have options, but many of those options are not favorable. If we do nothing, her body will be depleted of life giving blood within weeks to months. She can receive transfusions of blood to nurse her along, and this would extend her expectancy out to 8 months to a year. The regular chemo is also an option, though the side effects are horrible and have lasting effects which would reduce her already low quality of life. The best options seem to be to participate in a clinical trial, of which there are 3 that the oncologist knew of at City of Hope. She will need to be off her immune suppressants, as the trials require that there be no active Graft-Versus-Host-Disease in participants. She'll be weaning off those, with the hope that any remaining GVHD will attack the leukemia cells and then back off.

While we were waiting for the results of the bone marrow biopsy which confirmed the relapse, Krista shared Joshua 1:9 with the boys and let them choose a heart-shaped rock from her collection with the verse reference on it to keep in their pockets. When they feel it in their pockets they are reminded to be strong and courageous and to pray for her. Since the results came back, we have been reminded of the wider context of that verse. This promise came to Joshua at the end of 40 years of wandering in the wilderness, as the Israelites were finally permitted to enter the promised land. Soon afterward, they entered the land, crossing over the Jordan river, and purified themselves as they camped on the bank before starting their conquest. The following took place in that context: 
"Now when Joshua was near Jericho, he looked up and saw a man standing in front of him with a drawn sword in his hand. Joshua went up to him and asked, 'Are you for us or for our enemies?' 'Neither,' he replied, 'but as commander of the army of the Lord I have now come.' Then Joshua fell facedown to the ground in reverence, and asked him, 'What message does my Lord have for his servant?'" (Joshua 5:13-14) 
This stranger was an angel of the Lord who came to give Joshua instructions for the first part of the conquest. Though the whole story of the taking of Jericho is an amazing story, what struck me is that this warrior/angel was not on Joshua's side. The Lord has his own plans, and those may or may not be in line with ours. Clearly, the implication is that Joshua was to join God in His plan, and he did so before the instructions came. And that may be where we find ourselves as well. This is not part of our plan, but it is somehow in His plan. He may bring healing, and we earnestly pray that He will, or He may not. Either way, we will trust Him, that even in this He will work in all things "for the good of those who love him, who have been called according to his purpose" (Romans 8:28). Ultimately, this world, as wonderful as it is, is full of trouble (John 16:33), but that in heaven "He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away." (Revelation 21:4).

So we are back to waiting. While we wait to know if she is a candidate for a clinical trial that will accept her, she'll be monitored by the local oncologist to make sure her blood levels don't deteriorate rapidly. She'll probably be getting some sort of port because her veins are getting difficult to find and she's getting bruised up when the needle insertions go in the wrong place. We have to save as many platelets as possible! Her experience with getting ports has not been pleasant, so she's dreading that a bit. Please be strong and courageous with us and pray for us, as the battle is just beginning again.  --with love in Christ, Mike

Tuesday, August 4, 2015

Update on the Next Step Re: Spine

Finally, we received a call from the UCLA neurologist today. She apologized for the lack of communication, and assured us that she hadn't called because she's been busy researching my very complicated case. She didn't want to call until she had the final piece of the puzzle.

Since the MRI was performed without IV contrast (because insurance failed to approve that), the results I reported about yesterday are not 100% certain. Next step? Actually re-doing the MRI with the IV contrast. Thanks, Aetna. Real smart. So, it ends up costing more. Once those results come in we will know how to proceed.

This doctor also mentioned the banding, or legions, in my brain. She's not certain that they are from radiation necrosis after all! That's another example of what I meant with always a diagnosis, yet never really understanding the true cause of the symptoms or test results. She mentioned that they could indicate GVHD or lupus. 

I also happened to visit my rheumatologist today whom I haven't seen in a long time. I was able to catch him up and he is going to do some extensive blood work and will also look at autoimmune disease as a possibility. He's also ordering a couple of x-rays of my knees, hops and pelvis to rule out any avascular necrosis which is dead bone from prednisone...the nastiest drug I have to take. Without it, the GVHD acts up and, if out of control, can be life threatening. It's just a catch-22 isn't it?

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day." 2 Corinthians 4:16

Upon leaving the doctor's office I was walking to the parking lot with my walker and didn't notice a sudden sharp, yet small, decline and my walker left without me causing me to crumble. My body just went down onto my ankles, folding like an accordion. And once it started going, there was no brain communication to stop it, or pull myself up, or push my legs straight to prevent the fall. I laid on my side, and after the initial shock, I was able to move my knee and ankle and see that it wasn't broken. To get up, I had to get on all fours--knees, already in pain, pressed hard against the concrete in order  to leverage my feet underneath me with the aid of Mike and my doctor (who witnessed the fall and came to help) on either side of me pulling me up by the arms. I made it to the car and Mike and I split a nice meal at the Montecito CafĂ© before the pain really set in.

Hours later, I'm in a lot of pain, having a hard time bearing wait on my knee and ankle. If it's this bad tomorrow, I'll have to have it looked at...oh the timing! This was my week without kids to have a little fun with Mike out and, with his help, declutter and organize. I pray I recover quickly because I'm slow and laid up enough as it is, and even with the little I can do, my mind is active and I like to try, try, try.

Other than praying for my recovery/healing, you can pray that Aetna will come through on appeal Tuesday regarding a medication I've been on for over a year, need badly, and without it I will likely withdrawal. I ran out a week early because I had to increase the dose and even though the doctor wrote me a new dose prescription, they denied the pre-authorization. Tomorrow the doctor will appeal. If it fails, the next five days will be pretty tough. It's far too expensive (thousands) to pay out of pocket, especially because it comes in packets that are sealed in a box. You'd have to buy the whole month's worth.

I pray for YOU that you will be blessed this week in a special way for taking the time to care about me by reading my updates and praying for me. You are very dear to me!

Monday, August 3, 2015

The Ever-Ebbing Journey: not that, but this!

Here we go again! Always a diagnosis, yet never quite understanding the true nature of it or what remains undiagnosed. This afternoon, I received my copy of my most recent MRI of the lower lumbar. The UCLA doctor, who is an MS specialist, ordered this test as a final diagnosis differentiation as she had already ruled out MS and settled on Radiation Necrosis (brain damage from radiation).

I received the report too, and this was also copied to all my doctors. Yet nobody has called me about it. My only gripe is that I called and left a message with the ordering physician a week ago and she still has not contacted me. 

The results are ominous, saying a lot of gobbledygook that I had to look up, the MRI was taken without contrast because insurance wouldn't cover with contrast so I'll probably have to do that again. But the MRI did indicte spinal cord disease...something called "cauda equina for LMN syndrome." I'll let you look that up to find out what it means, but from what I've read it's pretty serious, like needing emergency surgery serious. Ugh. Causes are likely due to the bulging discs in the lower lumbar region, protruding 3 mm into the spinal canal, indenting the ventral thecal sac and contacting the L5 nerve root. Also there is lateral recess narrowing and borderline spinal canal stenosis. There are a few other findings, but I know less about them and will not bore you. 

When I looked up this condition, I find that it's a medical emergency and the earlier surgery can be performed the better the prognosis. How soon from onset of symptoms? Oh just 8-48 hours! That's when I cried. It's been a year and a half of the game of differential diagnosis and I'm losing. If only we could start with the most rare and emergent of diagnoses' then move up the line, instead of starting with the most mundane and moving down the line. I would have found this much quicker and could have prevented so much damage. Hopefully, it's not too late. But it feels like I need to find an excellent spine surgeon immediately. If you know of one within the L.A. to Santa Barbara area please let me know!

Of course, all of the above is based on what I read in the report and I know nothing except what I've read and not necessarily as it relates to my case. My real next step is to get in touch with the ordering physician, the neurologist at UCLA, but she didn't return my call last week. That's VERY frustrating! Until we talk to her there's no next step, but I still want the name of a good surgeon or spine specialist just in case because a year and a half of waiting, (well searching), has made things worse and I want to be ready for anything.

The NIV Bible puts Luke 1:37 this way, "For no word from God will ever fail." In the NKJ version it says, "For with God, nothing shall be impossible." Both are true and mean the same thing. It is God's word that I rely on because without it, without Christ's love, support and guidance, I'd feel pretty upside down and absolutely frustrated! I admit, I am frustrated, but not absolutely so.

From 2 Peter 1:2-3 
"Do you want more of God's kindness and peace? Then learn to know him better and better. For as you know him better, he will give you, through his great power, everything you need for living a truly good life: he even shares his own glory and his own goodness with us!"