Continuing

It's hard to believe that it's almost two weeks since Krista passed.  It has been such an encouraging time full of the love of family and friends, though sad to not be able to share it with Krista any longer. I am so grateful for everyone who helped get everything ready.  We couldn't have done it without you all, and it was amazing how you all made it come together so efficiently! For those who weren't able to make it, the crew at Calvary Chapel was able to record a video of the "Celebration of Life" which you can watch at this link. I have heard that the service was quite impacting on many who saw it. May her life continue to touch your life as it continues to touch mine.

I took the last week to take care of a bunch of details following Krista's death, and my mother stayed with us to help through the transition.  With her gone home now, the house is starting to feel too quiet -- not because it's empty as there are still two teenage boys here after all!  The boys have been able to get back to school pretty much right after the funeral, and seem to be coping well.  (I'm so grateful for the six weeks we had to process our feelings before she left -- it has made the transition so much less distressing for all of us!)  I've been off work for about two months now, and it's time for me to be getting back to it. Tomorrow is my first day back, and I am feeling mostly ready for it though a little concerned about all the changes I'll have to catch up on.

The holidays are coming up quickly and I'm sure that its going to be difficult without her.  Please continue to keep us in our prayers.

The Lord is good to those whose hope is in him,
to the one who seeks him;
it is good to wait quietly for the salvation of the Lord.
It is good for a man to bear the yoke
while he is young.
Let him sit alone in silence,
for the Lord has laid it on him.
Let him bury his face in the dust—
there may yet be hope.
Let him offer his cheek to one who would strike him,
and let him be filled with disgrace.
For no one is cast off
by the Lord forever.
Though he brings grief, he will show compassion,
so great is his unfailing love.
For he does not willingly bring affliction
or grief to anyone.
(Lamentations 3:25-33)

 

Gone Home

Thank you all for your loving care and attention (and patience) during this really difficult time.  After just under 6 weeks at home with hospice care, Krista passed away Tuesday, November 3.  It was amazing to have her with us that long because we expected to only have a few days with her, maybe a week or two.  Clearly the Lord had other plans. It was an amazing time, with Krista being alert and clear-headed for most of it. She had a large list of things she wanted to do before going, and I am pleased to say that we not only completed the list, but also had some really beautiful time together as a family.  She will be greatly missed, though we are glad that she is now being comforted by Jesus himself and free from the suffering she endured for so long.

One thing that was very important to Krista was what she called her "Celebration of Life", her memorial service to which you are all invited to participate in.  She has planned just about every detail of it, and it will not be like most memorial services.  For one thing, Krista has requested that we all wear white with the idea that she wants it to look like what they wear by the Aegean Sea: bright, flowing tops and maybe light blue bottoms reminiscent of the sea itself.  She wants the experience to be like how she envisions heaven to be based on Revelation 19:8

Then I heard what sounded like a great multitude, like the roar of rushing waters and like loud peals of thunder, shouting:
“Hallelujah! For our Lord God Almighty reigns.
Let us rejoice and be glad and give him glory!
For the wedding of the Lamb has come,
and his bride has made herself ready.
Fine linen, bright and clean, was given her to wear.”
(Fine linen stands for the righteous acts of God’s holy people.)

The service will take place at 2 pm on Saturday, November 7, 2015 at Calvary Chapel Santa Barbara, located at 1 N. Calle Cesar Chavez, Suite 21, Santa Barbara, CA 93103.  Please join us if you are able.  Catherine Grant (jandcgrant@aol.com) is helping to organize the event, so you may contact her if you have any questions.

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

Tears

"'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

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 Café 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!

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!" 

Long-Awaited Update, Part II

If you didn't get a chance to read Part I of the Long-Awaited Update, be sure to do that first! As promised:

I will continue in part II with what our new situation requires and invite anyone with the resources, knowledge or desire to help to join us in that endeavor.

As I mentioned, having radiation necrosis has been a very difficult diagnosis in that I have lost so many abilities--let alone having to forgo many dreams I had waiting for the day I'd be recovered enough to attempt them. I also pointed to the importance of pleasing the Lord as our primary goal which takes the pressure off all that wishin'! 

But with the loss of abilities--things you completely take for granted until you lose them--come a multitude of life changes and alterations just to keep going in this world. It would be truly overwhelming if I wasn't so sure that God would provide for all our needs, but He always has provided no matter what road He's led us down. Since I am in no shape to have a fundraiser, I'm just going to list what our needs are so you can join us in prayer specifically and perhaps you have one of these hanging around not being used or wish to donate toward the expenses. If you do wish to donate you can click on the established Paypal link on the top of the blog or send a gift to 5069 Oleander Pl., Santa Barbara, CA 93111. These items are above and beyond the regular and ongoing medical and prescription bills.

Items listed are in no particular order, just as they come to mind, and with estimate if know: 

Portable Air Conditioner - This was paid for with a gift from a dear sister--thanks B!

Hand Cycle Ecerciser This has been acquired - thank you, C! 

Sleep Number Bed - $5,400 - I was breaking ribs trying to get out of bed by pushing myself up with no use of my legs. This was the appropriate solution for me and had to be purchased so I could get some sleep instead of staying in the recliner uncomfortably in the living room with just a few hours sleep per night! I also need it to keep my feet elevated because of the inflammation. So using most of our savings we paid down to be able to finance the rest paying $75 for 3 years. And since it was for my specific need we went without all the features...in fact Mike doesn't have the ability to raise or lower his head or feet--the bed is split!

Hand Controls Installation in Car - $750 - I haven't been able to drive since January and my friend Donald who has Cerebral Palsy has been driving for years with hand controls! I'm not sure the cost of the controls themselves yet.

Electric Wheelchair - $1,200-$2,000 - I am using an insurance-grade manual chair that is difficult to push, and my arms aren't strong enough to do it myself. It would also be nice to be able to elevate my legs for long outings. $400 has been donated toward this expense so far - thank you!

Leg Compression Machine - donation promises have come in that provide for this much-needed machine! Praise God!  It came in today and I used it 15 min. and saw results already. I'll be using this regularly! Thank you!!!

CircAid Juxta-Fit Compression Leggings and Ankle/Foot Wraps - {$100 has been donated toward this need, 

but we are moving that to the above leg compression machine. Today, the doctor explained how this machine could help more while the leg wraps would come in handy for long days out when I can't put my feet up!}

Physical Therapy  - $??? - I haven't officially started this very necessary treatment so I don't know what I'm in for here.

Hearts Therapeutic Equestrian Lessons - $240-320/month - this is a dream that actually could help the brain-body connection and mind/body/spirit as well! Visit them at http://www.heartsriding.org/ride/about-therapeutic-riding/ to learn more about therapeutic riding!

IPad - $500-800? This is a requirement for Trevor's 9th grade year. It is not a surprise to us, but everything else has been so I thought I'd just throw this one out there in case you have one you're not using (not first gen. though per school guidelines). Or maybe you're a top exec at Apple and wish to donate one to him.

Seems extensive, I know, but I also know that "nothing is impossible with God!" I might put this on a Go Fund Me site as encouraged by friends to do so, but again, I really appreciate your specific prayers regarding these items and I'll post photos of the item when we acquire them.

One more thing to help Mike out:  Our dear friend Katherine Marton created a meals calendar for those who are local and wish to provide our family a meal. One can sign up for a Tuesday, Thursday or Saturday. The calendar is now through Meal Train. Here's the link to our calendar: https://www.mealtrain.com/trains/0z49v5 (copy and paste--Blogger changed how to format this stuff and I haven't figured it out yet!)

2 Corinthians 9:7-8 is fitting for such a post as this:

Each of you should give what you have decided in your heart to give,not reluctantly or under compulsion, for God loves a cheerful giver. And God is able to bless you abundantly, so that in all things at all times, having all that you need, you will abound in every good work.

2 Corinthians 9:10-12 Now he who supplies seed to the sower and bread for food will also supply and increase your store of seed and will enlarge the harvest of your righteousness. You will be enriched in every way so that you can be generous on every occasion, and through us your generosity will result in thanksgiving to God. This service that you perform is not only supplying the needs of the Lord’s people but is also overflowing in many expressions of thanks to God.

A Birthday Milestone and Long-Awaited Update, Part I

Today is my 44th birthday--the anniversary of my physical body which the Bible refers to as a tent--one that is wasting away on the outside, but inside is being renewed day by day. (2 Corinthians 4:16) This inner renewal is true for every believer in the Lord Jesus Christ as their personal Savior, so if you haven't already put your trust in him ask me or another Christian in your life to share with you more about that.

      My first sunrise in years--a 5am birthday gift from Mike who is not a morning person!

Without the hope of Christ, what he's done and who he is, I don't think I would have made it this far through the sufferings of the last 10 years, especially of the last year and a half. If you followed my journey from the start that might comes as a shock to you because you know the first transplant I had in January of 2009 was pretty traumatic, receiving massive amounts of chemo and radiation and spending nearly 3 months in the hospital because of my organs shutting down then an induced coma that had me in ICU for 2 weeks. But this second transplant was harder in many ways. First the news of it was harder because it was just so unexpected where the first relapse I had was sort of expected. Also I switched hospitals and doctors so the City of Hope does things differently, taking your case in front of a board who decides which cases they can take based on probability that the "case" will survive long term. Waiting to hear my fate, whether transplant or hospice, was very difficult.

The 2nd transplant itself was easier in that the pre-conditioning was less intensive, theorizing if they'd thrown everything at the leukemia the first time, and still a rogue cell or two were left behind hiding somewhere to proliferate, then this was a very aggressive form and that treatment wouldn't work again. So my only hope for more years was a transplant from an adult marrow, or stem cell donor. Thankfully, I had a new pool to draw from and had many matches this time. Recall with the first I'd waited 4-5 months and had to get an unmatched cord blood donation from Aulstralia. This time my donor was a young female college grad from Germany. 

What has been more difficult this time around wasn't the transplant itself but the recovery period. I had the 2nd transplant on October 30, 2013, my youngest son's birthday. I was home by Christmas. Things went along ok, but within 6 months, my foot began swelling very large. Then it spread--first to the other foot, then up both legs. I have inflammation all over now, head to toe. I have sought potential medical reasons for it which has led from one thing to another. I'll spare you the details, but here's what I've found out in regards to my challenges over the last year:

*most of what ails me is a result of the treatment for leukemia, the pre-conditioning to receive a transplant, GVHD and the side effects of medications taken to reduce GVHD or prevent rejection.

*osteoporosis due to long term prednisone use found out after spontaneously breaking ribs. Also found more broken ribs after falling on my back. Ribs are healing nicely now. I am required to get an infusion of Reclast once a year to replace bone loss. Getting off prednisone is a goal, but remains very difficult to do.

* I also have prednisone-induced diabetes which I control through diet and Metformin.

* the worst thing I'm dealing with though, and have been for the last year as it progressively worsens, is a partial paralysis of my lower half. I can no longer walk, or do so with a spastic gait with use of a walker around the house. Outside the house I need a wheelchair because I don't last long with the walker. This has proven a most difficult adjustment. The cause of this is NOT muscle weakness, but it stems from the brain's communication center. On an MRI, there shows lesions in the white matter that represents damage done by the full body radiation I received in 2009 for my first transplant. Called "Radiation Necrosis," this damage is permanent and has been a source of discouragement for us. It means I lack abilities I once took for granted, like going to the bathroom when I want. Now I cannot feel the signals so have to plan accordingly. It has also caused some comprehension and memory problems as well as attention deficit problems which is why I haven't been blogging. 

There are a couple of treatment options. One is use of the hyperbaric chamber. However, I have too much inflammation to use that. Imagine going up in an airplane with a cold times 100. No way! The other is an infusion of Avastin found to help some with radiation necrosis when it was tested for killing brain rumors (that didn't work unfortunately). So I have to get with a neurologist-oncologist. I also have to get one more MRI of my lower spine to see if there is another reason going on in addition to the necrosis that would cause the crazy inflammation. Pray for me for the God's healing power of restoration or the grace to live with this condition for many years.

So, that's what has been going on with me. That and a lot of grieving. Recently though God has been really ministering to my heart through the gift of gold He's given me --my dear friendships! He's shown me Scriptures I've read many times but have only seen them now with fresh eyes as I needed them most. I had been letting myself get caught in the trap of self-pity and regret. Since I've lost so much I regretted all that I had not done and now cannot do. But now, I realize that my real aim is to please the Lord in every action and thought. 

2 Corinthians 5:9So we make it our goal to please him, whether we are at home in the body or away from it.

While I've heard this term, "pleasing the Lord," it was never so clear that it is to be our great focus until I saw it in the above verse. It has already freed me up to love more purely and to remain joyful despite my circumstances. No longer do I reside in trying to please myself or others around me. That only left me quite miserable! Instead, I feel I can see more clearly, experience joy more fully and love others with the goal of merely pleasing Christ.

I'll leave you with the whole passage that blessed me so:

2 Corinthians 5:1-10

1 For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. 2 Meanwhile we groan, longing to be clothed instead with our heavenly dwelling, 3 because when we are clothed, we will not be found naked.4 For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed instead with our heavenly dwelling, so that what is mortal may be swallowed up by life. 5 Now the one who has fashioned us for this very purpose is God, who has given us the Spirit as a deposit, guaranteeing what is to come.

6 Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. 7 For we live by faith, not by sight. 8 We are confident, I say, and would prefer to be away from the body and at home with the Lord. 9 So we make it our goal to please him,whether we are at home in the body or away from it. 10 For we must all appear before the judgment seat of Christ, so that each of us may receive what is due us for the things done while in the body, whether good or bad.

I will continue in part II with what our new situation requires and invite anyone with the resources, knowledge or desire to help to join us in that endeavor. Until then...God bless you

Milestone: One Year Since Second Bone Marrow Transplant

For those of you who follow this blog, detailing my journey of survival and hope, you've waited a loooooong time for an update! My apologies! It has been a year of whirlwind ups and downs, sometimes a step forward and two steps back. Isn't it supposed to be the other way around? 

Over several months I've been in and out of the ER most of the time for severe stomach upset, both vomiting and diarrhea, which caused a dangerous drop in blood pressure and dehydration. A couple times it was for a pain crisis and a couple times I was hospitalized for a fever that crossed the threshold of acceptability. 

The ups have been many as well. I've enjoyed getting to know new friends that have become very special to me. I've had the pleasure of getting to know Kim Newton who has generously given her time and energy to drive me so many times to City of Hope which lies 2 hours south. I can only drive 45 minutes at the most so this help has been so appreciated and lets Mike work instead of having to take off of work. Kim introduced me to Roxanne's A Wish and a Dream Quilt Shop and to the world of quilting! I made my first couple of quilts, a wall-hanging and a quilt top, took a class and am almost finished with that quilt top, another wall hanging which is a gift I have yet to finish, oh and many projects in my queue, which I hear is a common problem for quilters! I started with a bang, then got overwhelmed with fatigue and stomach problems and find myself resting and getting inspired, but unable to get it done myself! 

I've also had a great time getting to know various women of Calvary Chapel. I risk leaving some out, but have to mention new friends like Linda Laskin, Carolyn Wageneck, Mary Carty, and so many more who have given their love, prayers, gifts and friendship over the past year. There are some ladies who've given me all that who I don't even know! That's just the kind of community we have here in Santa Barbara at Calvary Chapel. I'm so thankful that even though this whole year I've been unable to attend church on Sunday (my family goes without me so I can stay out if large crowds), not only have I not been forgotten, I've made new friends who've reached out to me and whose fellowship keep me going! A month ago or so, Mike and I started going to a mid-week Life Group. It's been a blessing to feel connected to the church body again! And now that my 1-year has passed I can start to attend Sunday mornings again. Thankful to have the option to watch the service via live stream, it will be nice to worship in that space.

I'm on so many medications and they've really taken a toll on me. I don't look or feel in a way that I recognize. But they keep my immune system at bay (to prevent severe GVHD), my blood pressure down, my thyroid in check, they attempt to normalize my hormones (not there yet!), give me energy, reduce my stomach acid, increase my vitamin D, connect my nervous system, reduce pain and move my bowels! Ha, too much information! The thing I deal with most now is gastritis, or inflammation of the stomach lining. 

I recently had an endoscopy and a biopsy of four places in the gastrointestinal tract to look for GVHD. The good news is they found no evidence of it or of any infections. They've just determined my problems gastritis. Now I need to figure out what to do about that. Is there a certain diet that could improve it? Or is it medication side effects that won't improve until I can get off of them? I don't know, but I covet your prayer for a miraculous healing there. Add to that my second problem which is also inflammation, but all over and most notably in my feet, ankles and calves. There is no known cause as we've sought all possibilities through a variety of specialists. Insurance has not been covering things as well as they used to do and we are tapped out. So please pray for healing and that God would provide for my medical needs as He always has.

Two things I started that seem to help is gentle exercising at AC4 Fitness, working with a woman who is showing me what and how to do it without overdoing it so I don't have too many setbacks. The other thing is acupuncture! I found an excellent place called Downtown Community Acupuncture which offers treatments on a sliding scale from $20-45. It's so convenient with their online appointment setting and paractitioners available all day, everyday. With my level of problems, ideally I'd be able to go 3 times a week, but am stretching to afford 2 per week. I'll take it! I highly recommend this group if you have pain or any other problem, unspecified or not,

Yesterday was my one year anniversary which some call a new birthday, but since it is my son's 13th birthday as well, I call it my anniversary. He didn't seem to keen on sharing his birthday with me, not understanding what was meant by it, lol! Though as he headed off for school yesterday and I told him "Happy Birthday!" he yelled over his shoulder, "Happy Birthday!" twice to make sure I heard him. Too sweet!  

Finally, thank you to those who have shopped through my Amazon affiliate link in the sidebar on the right. Every little bit helps offset our costs and we appreciate your help! If you haven't already done so, please bookmark this link to return to it easily when you choose to shop at Amazon. Right click to save his link: Shop Amazon Now.

Day 56: Female?

Today Krista and I drove down to the City of Hope for a checkup. The labs show that the previous concern for her liver is not likely to be GVHD, since the results were better this time than last. Blood counts are good and the stomach pains she experiences from time to time don't appear to be anything serious. They're reducing her prednisone dose but not much else will change. 

On another note, Krista received a card today from the stem cell donor!  It was a very sweet letter (addressed "Dear little fighter heart") from a 24 year old German girl, just leaving university to "find her place in the world". We were so surprised because we had thought the donor was a young male. So now Krista has a new blood sister! The communications between donor and recipient are regulated so we don't know her name yet. Eventually when it is allowed (in about 2 years) we would love to meet her.

So much happened today, and we are so grateful to everyone for their kindness and generisity. My work held a bake sale to raise money for ongoing medical expenses. We couldn't be there but it looked like a very good turnout. Also, special thanks to Kim and Maya for their friendship and extra dose of love shown to Krista today. The Lord has been so good to us. 

Shout for joy to the Lord, all the earth. 

Worship the Lord with gladness;

come before Him with joyful songs. 

Know that the Lord is God.

It is He who made us, and we are His;

we are His people, the sheep of His pasture. 

Enter His gates with thanksgiving

and His courts with praise;

give thanks to Him and praise His name. 

For the Lord is good and His love endures forever;

His faithfulness continues through all generations. 

(Psalm 100)

Day 53: Two Days

I was too tired last night to blog, so this is a two day summary.

Krista's visit to the City of Hope went well, though there were some adjustments that have to be made to her medicines. The labs are showing that her liver enzymes have increased unexpectedly. She had an ultrasound taken on her liver, looking for signs of GVHD activity - and while they were at it they continued on to ultrasound her stomach, gall bladder, and kidney. There was nothing unusual to report, though it is possible that there may be some GHVD in the liver that is just too small to report. They're increasing her ursodiol dose to better protect the liver.

One of the other medicines she takes seems to be causing a problems now since her triglicerides have increased. It's a known complication of the rapimune, an immune suppressant. They reduced the dose she takes of it since she's going to need to be on it for about 6 months. It's just another medicine that it's important to get the correct dosage for.

It was nice to have Michelle around for the trip down to City of Hope. (Thanks again for driving, Michelle!) The picture is of Krista and Michelle having a good time waiting for the valet to bring the van when they were ready to go. Things got a little complicated at that point because our van's battery had drained in the parking lot and the van wouldn't start for the valet. Fortunately, he was able to jump start it and the van seems to have recharged after the long ride home. At least it restarted easily today when we went off to see Trevor sing with his school choir. What a beautiful event. We're starting to get in the Christmas mood.

My cough has started back up in the last couple of days, and Trevor's started coughing too. We're trying to give Krista plenty of space to minimize the chance of her catching it too. Praying for healing for everyone here!

And He said, “If you will give earnest heed to the voice of the Lord your God, and do what is right in His sight, and give ear to His commandments, and keep all His statutes, I will put none of the diseases on you which I have put on the Egyptians; for I, the Lord, am your healer.”
(Exodus 15:26)

Day 51: Big Day Tomorrow

Krista's continuing to do well here at home. Tomorrow she has another checkup down at City of Hope.  She has to leave by 6:30 am so that's going to be a challenge for her. I have to stay here because the cleaners are coming tomorrow also. Isn't it so nice that our friend Michelle is going to take Krista down and back. Thanks, Michelle!

I will listen to what God the Lord says;
he promises peace to his people, his faithful servants—
but let them not turn to folly.
Surely his salvation is near those who fear him,
that his glory may dwell in our land.
Love and faithfulness meet together;
righteousness and peace kiss each other.
Faithfulness springs forth from the earth,
and righteousness looks down from heaven.
The Lord will indeed give what is good,
and our land will yield its harvest.
Righteousness goes before him
and prepares the way for his steps.
(Psalm 85:8-13)

Day 50: Working

I was amazed to hear that Krista folded and put away the laundry while I was at work today. I meant to do that myself when I got home, but she beat me to it. She said that she didn't do it all at once, but she completed two basketfulls. Thank you, Lord, for how quickly she's progressing in her recovery. 

All your works praise you, Lord;

your faithful people extol you. 

They tell of the glory of your kingdom

and speak of your might, 

so that all people may know of your mighty acts

and the glorious splendor of your kingdom. 

Your kingdom is an everlasting kingdom,

and your dominion endures through all generations.

The Lord is trustworthy in all he promises

and faithful in all he does. 

(Psalm 145:10-13)

Day 49: Sleepy

After the big day yesterday, Krista had a well deserved sleepy day. She slept in late today and had a good afternoon nap. Both those worked well with our schedules, since she was awake when we were home. She's not got much energy or strength right now, but it's good to be able to share our regular days together as much as we do.

Therefore, since we have a great high priest who has ascended into heaven, Jesus the Son of God, let us hold firmly to the faith we profess. For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin. Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
(Hebrews 4:14-16)

Day 48: Blessed

Krista had an appointment for a checkup at the City of Hope today. Our friend Kim so generously offered to take her down and back. It sounds like they had a good time visiting, and the checkup went well also. She's wiped out tonight, tired from the activity but satisfied with a day well spent.

I was able to go back to work today. My cough is actually almost gone now. I am just in awe of how blessed we are. I found an anonymous financial gift left in my office (thank you whoever is behind it)! Krista also says that we have received a large donation online. Thank you all so much for your generous help with all that we're going through. May The Lord bless you many times over!

How blessed is he who considers the helpless;
The Lord will deliver him in a day of trouble.
The Lord will protect him and keep him alive,
And he shall be called blessed upon the earth;
And do not give him over to the desire of his enemies.
The Lord will sustain him upon his sickbed;
In his illness, You restore him to health.
(Psalm 41:1-3)

Day 47: It's Beginning To Look A Lot Like Christmas

It was amazing that Krista got to blog yesterday, but as she discovered the shakes make it really hard to type. So I'm back to the blog tonight. Krista's doing well at home, though she had big plans she hasn't been able to do just yet. Watching all those cooking shows inspired her to help out in the kitchen, organize meal plans, and help clean up. Well, cleaning is really not allowed as that would expose her to too many germs. Cooking would be fine, but it's pretty frustrating to do much more than simple things with the shakes. She found success helping to find some recipes for me to pick up stuff when I went shopping this afternoon, though!

I wasn't able to rest much today since Christmas is coming up fast. Trevor and I got all the decorations down. I worked the outside lights and he set up the miniature village inside. I always forget how nice it makes our house look. With Krista's immune system in the shape it's in, we can't risk having a live tree, so we brought back the outdoor tree that you can see through the window of our living room. We also have two small pre-decorated artificial trees that complete the indoor experience.

It's very exciting to be together for Christmas. The lights remind us of Christ who is the light of the world.

For God, who said, “Let light shine out of darkness,” made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ.

Day 46: Home Again, Home Again...

Krista here! I am seeing if my fingers are willing to take over the blogger role. Unfortunately, the medication tacrolimus causes the shakes. When my youngest saw my hands shaking, he exclaimed, "That is so cool!" To which my oldest corrected him, "Trevor, that is not cool. I'm sure she doesn't enjoy it." They spent a few minutes discussing the joy and dismay of my new shake. FYI, Adam was right - not fun. And now I know, I have to acknowledge that I can not type except to peck with two fingers.

I just spent a week at City of Hope apparently recovering from a nasty stomach flu. They were treating me for an infection called c.diff just in case since they found an area of inflammation in there. I really can't believe how sick I was last Saturday and Sunday and how things changed around in such short time. Thank God!

I was glad to be there for the full week to let everyone get over their own flu. Mike got extra rest time. Trevor's lasted only a couple days and Adam just needed extra naps.

My labs are awesome - everything in normal range and platelets 230,000k! Technically I'm no longer neutropenic, so I am introducing fresh foods again. I can't imagine how I am supposed to live on processed, all cooked foods for 100 days and expect further healing. The 100 day "rule" is quite arbitrary and unique to City of Hope. UCLA's rule was just to eat low bacteria until your white count was normal. My favorite Nurse Practioner, Corie, and I had this discussion when she fell back into her UCLA rules having worked there for longer than at City of Hope. In fact, we shared many funny stories having been at UCLA at the same time and she knew Dr. Schiller.

I wish I had a picture to share from my week, but it was a real lazy one for me. Blah blah blah! I did lose some muscle as a result, but I have plans for improvement!

Tomorrow...it will begin to look and sound more like Christmas around here. I'm really looking forward to a quiet Christmas with the kids and Mike since we COMPLETELY missed Thanksgiving. That's a first!

Gracious is the Lord, and righteous;

Yes, our God is compassionate. 

The Lord preserves the simple;

I was brought low, and He saved me. Return to your rest, O my soul,

For the Lord has dealt bountifully with you. 
(Psalm 116:5-7)