It was with very heavy, yet thankful, hearts that my daughter, Bethany, and I boarded a plane to Seattle, early last Friday morning. Our life long friends' dear thirteen year old son had suddenly gone to be with the Lord. Much too soon. Much too young. Jameson was born with severe heart issues, has had several surgeries since birth, and has been their little miracle boy all along.
But not many would know it. He didn't let what he couldn't do slow him down. He just found other ways to live and love life to the fullest. At his memorial service on Saturday, I was overwhelmed by the stories from family and friends, his teachers, his principal, and many others who knew him so well, testifying to his kindness, his love for family and others, his funny antics, his devotion to scripture, and most importantly his love for his Lord. One comment particularly struck a chord with me. "He would rather be reconciled than be right." And he was only thirteen!
This young man may have had a greater influence and testimony to others during his short life than most of us do during a full eighty plus! God knew that day in May 2001 how many days Jameson would have, just as He knows ours. Jameson had a vast appreciation for life, for family, for God, for baseball and fishing, and for his friends. It showed in all he did. It showed in his words, in his choices, in that quirky smile.
From the time Jameson fell to the last of our goodbyes, his family, though grieving, were firmly grounded by our Lord and in His Word. Much comfort was shared through verses and passages that shined light back to the glory and majesty of God. Even Jameson had highlighted Psalm 24 in his own Bible.
"The earth is the Lord's, and the fullness thereof, the world, and they that dwell therein. For he hath founded it upon the seas, and established it upon the floods. Who shall ascend into the hill of the Lord? Or who shall stand in his holy place? He that hath clean hands, and a pure heart, who hath not lifted up his soul unto vanity, nor sworn deceitfully. He shall receive the blessing from the Lord, and righteousness from the God of his salvation. This is the generation of them that seek them, that seek thy face, O Jacob. Selah. Lift up your heads, O ye gates; and be ye lift up, ye everlasting doors; and the King of Glory shall come in...."
January 5, 2015
I have to admit that we did not mind seeing 2014 draw to a close. It was a difficult year for us, for our family. But the word the Lord gave me for 2014 was JOY!
“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds,
because you know that the testing of your faith produces perseverance.”
As we approached 2015, it was with hopeful hearts for a fresh year. But then it began with the unexpected loss of a dear friend’s child. A child who had already been a miraculous gift for thirteen years. Our hearts were broken for this sweet family. Where is the hope in this?
“But I would not have you to be ignorant, brethren,
concerning them which are asleep, that ye sorrow not,
even as others which have no hope.”
1 Thessalonians 4:14
“And we know that all things work together for good to them that love God,
to them who are the called according to His purpose.”
The Lord gave and the Lord has taken away;
may the name of the Lord be praised.”
may the name of the Lord be praised.”
"This hope we have as an anchor of the soul,
a hope both sure and steadfast and one which enters within the veil."
We also found out just before the end of 2014 that I would be entering a clinical trial to hopefully rid my body of the remnants of my cancer. Along with that, they will be removing my parathyroid gland on January 21st with the hope that my calcium levels will begin to regulate and I will stop spiraling downward with osteoporosis. Quite a busy way to start the year! And one that gives hope for the future.
For I know the plans I have for you, declares the Lord,
plans to prosper you and not to harm you, plans to give you hope and a future.
Then you will call on me and come and pray to me, and I will listen to you.
You will seek me and find me when you seek me with all your heart.”
“Yes, my soul, find rest in God;
my hope comes from Him.”
my hope comes from Him.”
We, as I am sure many of you, have other challenges facing us head on this year. Many are due to the changes incurred during 2014. I’ve never been a big “change” person, but when push comes to shove you just keep moving forward.
"So we do not lose heart. Though our outer self is wasting away,
our inner self is being renewed day by day. For this light momentary affliction
is preparing for us an eternal weight of glory beyond all comparison, as we look not
to the things that are seen but to the things that are unseen. For the things that are
seen are transient, but the things that are unseen are eternal."
2 Corinthians 4:16-18
"Through Him we have also obtained access by faith into this
grace in which we stand, and we rejoice in hope of the glory of God.
More than that, we rejoice in our sufferings, knowing that suffering produces
endurance, and endurance produces character, and character produces hope,
and hope does not put us to shame, because God's love has been poured
into our hearts through the Holy Spirit who has been given to us."
“Rejoice in hope, be patient in tribulation, be constant in prayer.”
“For whatever was written in former days was written for our instruction,
that through endurance and through the encouragement of the Scriptures
we might have hope.”
“Faith is the assurance of things you have hoped for,
the absolute conviction that there are realities you’ve never seen.”
"For in this hope we were saved. Now hope that is seen is not hope.
For who hopes for what he sees? But if we hope for what we do not see,
we wait for it with patience."
And so we begin this year full of hope, not based on anything we have yet seen, but simply because of WHO HE IS! I refuse to let the worries of this world tarnish the truth of the grace, mercy, and hope that we have in Him.
"Therefore gird up the loins of your mind, be sober, and rest your hope
fully upon the grace that is to be brought to you at the revelation of Jesus Christ."
1 Peter 1:13
This year, we also look forward to new lives in our families with two new grandchildren. Continued hope for the future.
And finally, my verse for 2015…. I’m bringing my Joy with me. May this encourage you, as well.
“May the God of hope fill you with all joy and peace in believing,
so that by the power of the Holy Spirit you may abound in hope.”
My hope is built on nothing less
Than Jesus' blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus' name.
When darkness seems to hide His face,
I rest on His unchanging grace;
In every high and stormy gale
My anchor holds within the veil.
His oath His covenant and blood
Support me in the 'whelming flood:
When all around my soul gives way,
He then is all my hope and stay.
On Christ the solid rock I stand;
All other ground is sinking sand.
On Christ the solid rock I stand,
All other ground in sinking sand.
When the last trumpet's voice shall sound,
O may I then in him be found.
Clothed in his righteousness alone,
Faultless to stand before his throne.
December 29, 2014
Back in May during my two-year check up, we discovered that my leukemia had returned as “minimal residual disease” or MRD as the powers that be refer to it. Throughout the next months, they continued to test and check to determine any growth pattern. While it has grown, it has still stayed at the “minimal” level. While that is good, it has not made my doctors feel that much better about my being out of remission. The reason is that they cannot predict how long it will remain “minimal.” It could be a few months, a few years, or a few days. And my stem cell doctor did not work so hard to save me just to let something slip in and mess things up! :)
So besides other matters such as unexplainable rashes, a throat biopsy that came back with a mixed message, and a parathyroid that still needs to come out, Dr. Shah has been looking at two possible options, actually three. 1) A DLI, donor lymphocyte infusion, which is where they use my donor’s lymphocytes for a mini transplant booster. The problem with the DLI is that there is a high risk of GVHD (graft versus host disease). 2) CAR (chimeric antigen receptor) T-Cell Gene Therapy, a clinical trial where they use my cells or donor cells (they will use mine in my case) to extract T-cells and engineer them to attack B-cell cancers that have a protein called CD 19. Or 3) Wait and do nothing until I am more symptomatic. There are new leukemia drugs that were not available in 2011-12.
The problem with option #2 was that I had not qualified for the trial, so we have been in wait mode…until late November when the specifications were changed and Dr. Shah shoved me in while the door was open! The reason she opted for #2 instead of #3 is that while it is a relatively new therapy, it is not far from what has already been done to me, so the side effects aren’t much different than what I have already dealt with. In fact, they should be much less (best case scenario). “Lowered immune system, hives, rash, low blood pressure, muscle pain, joint pain”…whatever. However, since my cells are mostly donor cells, there is still a significant chance of GVHD, even though I am getting “my own” cells. The greatest, but least likely, risk is that my old cells that get mixed in with the assassin group start attacking my graft. If that happens, we would have to go all the way back to square one with another stem cell transplant. :/
But the possible benefits far outweigh the risks! Her thoughts are that if this can get me back into remission while I am still “young and healthy” (I love when she says that) that we’ll still have #1 (DLI) and #3 (new drugs) in our back pocket for the any future bouts. The more chemo you use early on, the less effective it is later…the fewer options are available. I’m still young. I need to have as many options later on when I really am “old.”
So, today, December 29, I signed my consents; then they proceeded to take 21 vials of blood to use for gathering the T-cells. (Almost as much as in a can of Coke.) The first 18½ flowed out fairly well, but then I must have just run dry! :) They worked with my veins and re-stuck me, which made #3 for that arm for the day (labs and two draws). Nothing. They were about to just make do with what they had, but I insisted that we weren’t stopping until they had all 21! If we were going to do this thing, we were going to do it right! So they warmed up the other arm, finally found a vein, and got the last few vials. Done!
Over the next 50 days, they will genetically modify the T-cells and turn them into little assassins. Seven to eight weeks from now, I will receive my T-cell infusion, along with meds to help avert allergic reactions. In between now and then, I will have to get another CVC inserted for the receiving of the cells, just like I had for my stem cell. Somewhere in here, they are probably going to remove my parathyroid…before the cells go back in and the immune system goes down. Afterwards, I will start the routine follow up schedule similar to post transplant…. This is a 15-year trial! Praying that I make all 15 years!! :)
I decided to wear my special #BTHOCANCER t-shirt that we have in support of our friend Russell Lambert who is currently fighting a stubborn ALL. Today I am wearing it for us both.
Please pray with us that this therapy produces the desired effect of remission.
“May the God of hope fill you with all joy and peace as you trust in Him,
so that you may overflow with hope by the power of the Holy Spirit.”
December 22, 2014
We had our first of three Christmas celebrations yesterday, which has already put me in the end-of-year reflective mode. So while these things are fresh on my mind, I thought I would write them out.
2014 has been quite a year. In fact, the last several years have been doozies…each in their own way. It started out fairly well, actually, as much as I can recall these days! Then came April 17 when we lost our Kyla. Life will never be quite the same without her infectious laugh and a smile that could light up the world. But life, indeed, goes on. Just as it did when we lost the many before her. Painful, different, yes. But God is still good, and He is still on the throne.
Then came May. Within a three-day period of time, we found out that my leukemia had returned and that Paul had lost his job of 21 years. Our sense of security, hope for the future, all hung in the balance. Insurance, retirement, savings, income level all dropped drastically. I spent the next months back and forth to MD Anderson. Paul was carrying the weight of the world on his shoulders. But through it all, God is still good, and He is still on the throne.
Then just weeks ago came an opportunity for Paul that seemed a direct answer from God. But it turned out to be completely wrong! We struggled for an answer. What were we missing? What were we supposed to learn? JOY! We had been struggling with joy. No matter what situation you’re in, continue to obey God, to serve and love your friends, and you will find joy. Period. Why? Because God is still good, and He is still on the throne.
On December 29, I start a clinical trial that will hopefully get this cancer back into remission. (I’ll write more about the details of the trial at another time.) Paul is working for his best friend, as unto the Lord.
We move forward confident in the fact that God is good, and He is still on the throne!
“For the LORD is good; His lovingkindness is everlasting
And His faithfulness to all generations.”
August 9, 2014
August 4, 2014
For me, it was just another day on the 8th floor MD Anderson diagnostic lab waiting for my blood draw. This time it was to check out what could be going on with this rash that keeps reappearing.
But sitting across from mother and me was a gentleman, a good ten plus years older than I, his wife, and daughter. He was holding “the packet.” I KNOW “the packet.” And I know that look. The “deer in the headlights” look! It was his first day.
I quietly listened as they talked amongst themselves, asking unanswerable questions. I saw the fidgeting, the long stares at others around them. I knew everything they were thinking. We, too, had a day one.
The nurse called my name and I took my turn getting vials filled to be tested for one thing and another. When I walked back to join mother, I stepped across the aisle and smiled at the gray-haired man. “Is this your first day?” I asked. With a lost look of appreciation, he smiled and said yes. I asked what he had, and his wife (the newly appointed caregiver) said that they have had a difficult time diagnosing him but had finally decided on…and then rattled off one of the long, rare acute leukemia’s. :( I gave my biggest smile and said, “Oh, you've got one of the long named ones!!” :)
They asked me a few questions about my disease and treatment, and I simply tried to encourage them with the experience that I have had. To take one day at a time. That he’s in the best possible place. To hang on to God and family. Drink! Rest! Walk! And do whatever the doctors ask you to do…and then some.
Mother was so funny. She ran a bit ahead and started asking about things that he had no clue about yet! It was only his first day!! One step at a time.
Paul and I feel very strongly that anytime we’re at MDA and see a “newbie,” we should be open to God’s leading to talk to them. We remember how we felt. Lost. Afraid. While the team there is so incredible, it would have been great to talk to someone who had actually walked the walk!
God has given me several of these opportunities over the past months, and the folks have always embraced the conversation (and me) and seemed genuinely appreciative. I guess God made me a talker for a reason!
After a few more questions, we exchanged names. His name is Edward. I told him that I would not have any trouble remembering his name since my daddy’s name was Edwin and my husband’s middle name is Edward. :)
So I have added another name to my prayer list. I don’t know if I will ever see Edward again. But God placed me there at that moment for a reason. I believe He wants me to Pay It Forward. For all He has done for me and for all who have blessed, served, and prayed for me during this journey of ours, I will continue to "do unto others."
For you, Edward, know that you are being prayed for. Take one day, one step, one prayer at a time. Hang on to God and family. Stay positive. You are in the right place. And perhaps this past Monday, God had us in the same place for a reason.
“Beloved, if God so loved us, we ought also to love one another.” 1 John 4:11
July 29, 2014
Many of you have been graciously asking for updates regarding my recent and ongoing doctor appointments. This summer, it seems that we keep going from one thing to another, with grandchildren visits interspersed throughout. I am thankful for the fun times with the kids!!
The last major trip down to MDA left us with the decision that we would wait until October before doing the next round of bone marrow biopsies, flow cytometry tests, CT’s, etc. Well, that was before this nagging cough that I’ve had since last December got uncontrollable. MDA had already sent me to all of their folks to check for the big stuff, so we had decided that it must just be allergies (which I did not have before the transplant). :/ So I started on several allergy related meds, sprays, etc. It seemed to help…for a while. Then a few weeks ago, it came back with a vengeance that nothing would quiet!
During this same period, after a weekend at the country, I acquired a weird rash. Well, at first we thought I had major mosquito bites all swollen up, but it didn’t take long to figure out that wasn’t it! Four days of insanely itchy whelps followed by red splotches jumping from one area to another finally got my attention and I made an appointment to go to an allergist and sent pictures to my docs at MDA.
Ahhh! Prednisone! Relief. But he didn’t know what on earth was the cause. It seemed to be heat related, but it was very “atypical.” Then he gave me some wonderful nasal spray with an antihistamine in it and some cough medicine with codeine. First night I’d slept in ages!!
While this was all great, my docs at MDA were not happy. They do NOT like rashes!!! So Monday, even though I was cleared up for the time being, I went down for labs and a “viewing.” Unfortunately, some of my lab numbers that I have had trouble with in the past were stirred up again. Things that sound completely benign and silly compared to talking about cancer and the like.
First, my Potassium serum count is up again. It has done this many times over the months, now years. Doesn’t sound like a big deal, but it has to do with your kidneys and can affect how your heart works. So it’s kind of a big deal.
Second, my Calcium serum count is up again. This is a bigger deal. I have already been to the endocrinologist at MDA and been tested and discovered that I have a goofed up parathyroid gland. (Not the same as the regular thyroid gland.) The parathyroid hormone regulates the amount of calcium in the blood and in the bones. So my calcium is continuing to leach out into the bloodstream and not be absorbed into my bones, thus worsening my osteopenia/osteoporosis condition. Long story short, they have been watching this number waiting to see if they are going to have to remove my parathyroid gland. Looks like they probably will. :/ The frustrating thing is that I have had my whole body rebuilt without being cut on, and now I’m going to have to have surgery because of this silly little gland. Oh, well.
Next Monday, they want me to come back to see the GVHD doctor and the transplant dermatologist (who knows a whole lot more about rashes in transplant patients than the normal allergist or dermatologist!). Plus, I have to re-do all my labs. They are pretty sure that my rash is due to “immunodisregulation.” Yeah, I don’t think it’s a word either, but it just means that even though my immune system is better than it was when I was right out of transplant, I will never, ever have a normal immune system again, and I will be prone to get weird stuff.
Then, instead of waiting until October, Dr. Shah wants to do another bone marrow biopsy, flow cytometry test (blood and bone), CT, chimerism %, etc. in August instead of waiting until October. Sooooo, besides my granddaughter’s birthday, Paul’s birthday, great niece and nephew’s birthdays, trips to the country, still trying to figure out the details of Paul’s new job/insurance/retirement plans, projects to do now or later, and when to go back to Dallas so my daughter can catch a nap and a break from those three adorable little hooker dookers…August is going to be full.
So as I keep saying…one day, one prayer, one step at a time.
I sure am glad the fatigue is better!! :)
June 10. My stem cell coordinator called today. They finally made contact with my donor. Rather he finally contacted them back saying it was ok to tell me who he is. So I'm about to send the letter I wrote over a year ago to Mr. Richard Maloney of Massachusetts! Thank you for saving my life!!
June 11. He called me this morning! He read my letter and my ENTIRE blog last night! What an awesome conversation! It's like having a brand new old friend.
Richard is a mailman, father of two. His girlfriend is a nurse. His daughter works oversees with children. His son is in the medical field in the NE as well. He has only been to Texas while on a flight stopover in Dallas! He was given many opportunities to change his mind after finding out that he was a perfect match for me, but he never did. He kept going.
How do you thank a complete stranger for giving you a second chance at life? Are there enough words? Fortunately, stem cell donation does not require the same TOTAL commitment as organ donation!! But it IS a commitment! He had to take time off work, take certain meds, and undergo some uncomfortable days and recuperation time. And he did that for a complete stranger with no idea of whether or not it would work.
It did, Richard. There have been a few hiccups, but it’s working. This is about how long they would have given me without the transplant. And I’m still here!! I have seen another grandchild born. Had another anniversary. Spent time with family and friends. And I have simply loved living every single day that God gives me.
And that’s what I plan to continue doing. One day, one prayer, one step at a time.
Thank you, Richard. Thank you for giving me back my life.