Tuesday, July 14, 2015

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.

Monday, July 13, 2015

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. Meanwhile we groan, longing to be clothed instead with our heavenly dwelling, because when we are clothed, we will not be found naked.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. 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.

Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. For we live by faith, not by sight. We are confident, I say, and would prefer to be away from the body and at home with the Lord. 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