Monday, June 30, 2014
Sunday, June 29, 2014
I tried to be with Ed. We tried sitting by the pond, but his head started to hurt. We hemmed and hawed about calling the clinic regarding a slight fever and throat pain, finally giving in. We're new at this. The clinic understands, and really, should his temp rise, we must go in. They said we should watch the temp, but stay at home. We want to stay home.
Margaret is on her way northward. She was stopped at the border and had to pay for a work permit. For doing volunteer work. Unpleasant surprise. Can you believe it? Things have certainly changed.
Cats are settling. I am sorting. Stuff needs attention. Ed waits. Blackberry is never far from Ed. She is a true sentinel. It's really touching.
I think about hardship. I think about pain and suffering. I think about loss.
It isn't as if I haven't been through "trials" before:
poverty (yes, we qualified for food stamps at one time in our married life---but managed without)
neurological issues galore...
What about the day-to-day failures we have all experienced?
Bitterness and anger
Greed and envy
Pride and lust, gluttony and sloth?
Failure to accomplish goals
to finish projects
to do the "right" thing,
whatever that is...
What about these times of spiritual dryness?
Did God just slam the door in our faces? Why isn't He answering my prayer in Jesus' name?
Do I have sin that impedes my prayer? (The prayer of a righteous man availeth much)
Considering these things is always important. Truths are truths.
But here in the quiet of my prayer I see that God alone matters. His purposes are always the clearest and most peaceful.
My pain is irrelevant, really.
It is through weakness that He can show Himself strong, and God is a mighty friend.
God can answer any prayer, any way He wants.
I remember that sufficient grace.
He is my friend. He is my Father. He wants the best for me, for Ed.
Does Ed understand this? I don't know. He'll have to discover it for himself, as we all must. God is a personal God, desiring personal relationship with each of us.
I can sit here and know that He is my helper, my stronghold, my peace. Even regarding my trials.
This trial is hard to bear. I wouldn't want anyone else to go through this. I hate seeing my son suffer.
God hates it more.
But will He change these circumstances overnight?
He could. He can.
But not if it is for good. All things work together FOR GOOD to those that love Him. This is ultimate good. Not the tract mansion, the Audi (I do like them though, Ingolstaedter that I've been), the jet setting to the Caribbean. Those are temporal and worthless in my God's eyes.
My God values my spirit, born again in Jesus Christ. I belong to God, in Christ.
Death, where is your sting? Grave, where is your victory?
Nothing can separate us from the LOVE of GOD.
These things comfort me, not the things I covet.
God has promised all that we need. When it gets down to that we see how easily He does that.
And He gives freely His grace for the hardest of pain and suffering. Generous and just, so worth serving.
Saturday, June 28, 2014
She is to be the lifeguard at a camp north of Thompson, Manitoba this summer.
When I was sixteen I was able to be the lifeguard at the camp too. The experience changed my life (up to that point) and set my heart on fire for Jesus.
This camp is pretty remote.
Have you read "Mrs. Mike?"
(You need to!)
Margaret will get to see what it was like for that famous heroine, bugs and all.
As I've asked you to pray for Ed when the Lord brings him to your thoughts, please pray for our daughter, and her adventure as God reminds you of her. Pray for a safe journey, good friendships (she knows no one yet!) and a safe waterfront all summer!
Ed is home. He is resting. So am I.
Friday, June 27, 2014
We're tired. We're numb. We're realizing that we must focus on the twelve hours before us, and not more. There's only so much we can handle!
Getting home again is tops on Ed's list.
The infection appears to be gone, and the blood counts have reached an acceptable threshold.
NOW the newness of normal with leukemia sets in.
Staying at a major children's hospital makes you appreciate good health. Of course. We live our lives without too many reminders of chronic illnesses so when you see the evidence all day, days on end, it impresses. What a blessing it is to go about daily life for most people.
I am grateful.
Spirits have been up and down over the last week. They are rising as this day goes on. Good.
Thursday, June 26, 2014
Tuesday, June 24, 2014
Monday, June 23, 2014
We're in until Friday. At least. Looking forward to it already.
The Swedish Institute is a block away, and Ed will be allowed an outing to it tomorrow. With a mask, without his little IV trolley. He can go 4 hours without it.
Since it is midsommer we are expecting warm sun and mild air temperatures.
Something to look forward to.
Sunday, June 22, 2014
I'm starting to get very tired. This past week has been exhausting.
So, Ed has an infection by the port site. This was finally agreed upon by all clinic personnel. Apparently this is extremely rare, probably resulting from surgery last Saturday. That much is known.
He is responding to antibiotics intravenously, and for that we are GRATEFUL!
Should he not get better there will be surgery to remove the port and we'll be waiting a month to replace it.
Therefore we PRAY that the infection subsides.
Ed is high risk, and his ANC count went down from when he came home last Tuesday.
So the journey is off to a bumpy start.
We don't know when he'll be able to come home from the hospital right now. Because his condition is delicate he needs to be where they can help him, monitor him, and give him what he needs.
Yesterday and today he was nauseated, but the pain by his port was less. Gains and losses.
Things can never be simple, but we try to keep going with stuff at home. Pets need extra care right now, and that can be annoying. Corgi Hollows was a well-oiled machine regarding pet care, before, and now we all need to rise to the task of keeping them, our task schedule is jumbled.
I am SO grateful for friends who have offered their help with the lawn and other things. Wonderful blessings!
Bible School starts for Cherie tomorrow, so she'll be busy this week with her friends. Margaret prepares for her life-guarding adventure in the north. I will be at the hospital, and in and out.
My husband visited the bees yesterday. Perhaps you've heard about the rainfall we've had recently. Flooding is happening almost everywhere, and the swamps by the beehives are now small lakes. My dad says that in 50 years the level has never been so high. That is a lot of water. I cross the Mississippi twice a day to get from home to the hospital, and the level is uncannily high. It is a raging torrent.
The Bees. They seem to be doing pretty well. One hive of the seven, in particular, is extraordinary. We should get some honey from it surely. Another hive apparently swarmed. Let's hope they found a cozy new home where they can live for years as a feral colony. I always hope that with swarms!
I am grateful for friends who know how to check things out. I am not that kind of person. Research never thrilled me. I do love to read, and I've got my share of facts and figures, but I am immensely grateful for those friends I have who are doing homework for me.
The metaphor that keeps coming to mind regarding what we're experiencing is a train. I feel like we got on a train, and that train has left the station. We are on it for years. I'm just sizing up the fellow passengers and figuring out how to use this mode of conveyance. It's all new.
Maybe because we took Amtrack last fall for the first time ever I'm subliminally comparing? That, however, was a pleasant trip.
Back in those days before our world rocked and tipped.
Pray Ed's infection goes away. Pray for him. He's keeping a "stiff upper lip," but when they told him he couldn't go home on Friday there were a few tears.
Disappointment. It's setting in.
Saturday, June 21, 2014
At a routine Friday morning chemotherapy treatment yesterday the new port was determined to be infected. This would be very rare, according to the surgeon who checked it last night.
Ed had the chemo through a vein in his arm , not optimal, but the way it used to be done.
The surgeon wasn't convinced that the port was infected. Everyone else was.
This morning two surgeons came in to examine him and they both want to wait until the blood tests results are definitive.
Yes, Ed was prepared for surgery. He had to be admitted to the hospital pro forma with this type of concern.
We are here for an undetermined time.
I was told that having a bag packed for the hospital at all times is smart. Guess so.
Margaret supplied us last night...so we're set for now.
Friday, June 20, 2014
Questions abound in our minds lately. I think we answer them in the wee hours of the nights when sleep is difficult.
What's going on? Cancer, specifically leukemia, acute lymphoblastic leukemia.
When is this all going to be over? Three and a half years.
Where are we getting treatment? The oncology/blood disorder department of Children's Hospital Minneapolis.
Why is this happening? ---Why not? First and foremost, this dear world is fraught with abnormals. Sometimes our immune systems are overcome, and the bad takes over. "In this world you will have trouble, but take heart...I have overcome the world," said Jesus.
How this happened we may never know, said the nurse practitioner this morning. Why Ed? No answer.
Today was a puzzler. We are back in the hospital because the port is infected. Naturally Ed prefers to be home. There is probably no good answer for the reason we're here today except that someone forgot to wear gloves one night, or didn't wash...or dropped something...We wont know. We are disappointed that the chemotherapy roadmap has a blip already.
But we are grateful for a good hospital.
Will Ed learn to drive this summer? Probably not. He probably wont be lifeguarding this fall, even though he passed the test and earned his certification. He will continue to be home schooled, especially concentrating on math and science.
Perhaps by fall we will know another sort of "normal," much as we learned with his earlier diagnosis.
I don't know.
I do know that we have special help from my fellow believers in Christ, that we have many wonderful friends who are showing concern and praying and sending cards...meals...books... The lawn is mowed (!) and a house project is getting done because of caring friends. How can we ever thank you? We are grateful.
For your prayers I thank you. Just knowing a cry is arising from earth to heaven from hundreds of voices comforts me. Prayer is for us, the pray-ers, primarily, as God already knows the outcome, but there is power in prayer in that it alligns us with God's design. We don't twist His arm, but we are better able to see His ideas, His plan. We are somehow drawn into a stronger position to handle whatever this life throws at us.
Therefore, pray! Please!
May God, our marvelous creator, be praised, even in our heartache.
It was nice to be home for two days.
Pray we can get this infection whipped and the port area healed. Today's chemo treatment had to go through a peripheral vein...not optimal.
Roller coaster feelings, disappointment, uncertainty.
Your prayers are needed.
Thursday, June 19, 2014
Wednesday, June 18, 2014
It was touch and go last night.
Two units of blood made Ed feel nauseous, and a chemo treatment on top of that put him in the "Should we go home or not?" la-la land.
These days are certainly the lowest of lows. His numbers revealed no "blasts" yesterday, and that is good. His white blood cells are incredibly disappearing with the treatment. This leaves his immune system with little fight.
Therefore, we must guard against any virus or infection.
Cherie has been with her grandparents for a few days, complacent, easy child that she is, she has blessed them. I look forward to her return today.
Last fall, when Ed was diagnosed bi-polar on October 1, I thought my life had changed forever. In a way I feel that the worst "change" was already in progress for us, but this leukemia thing has taken it to a whole new level.
I needed to explain that Ed went through a 35 lb. weight gain on Risperidone, since his bi-polar diagnosis. He lost it with the "tonsillitis" since April. Anyone with that kind of weight roller coaster has difficulties! Since the Prednizone does the same thing the Risperidone does regarding weight we have to be extremely careful with this double dosage of meds. His diet needs to keep his blood sugar low, as chemo also spikes that! Lots of battles to fight.
We've been preparing ourselves for the hair loss and the "cushinoid" look. It shouldn't last, but this month will be tough.
I hope that explains what's happening here to many of you wonderful friends who have shown concern.
Last October I thought of a word that described what I felt like: fortressing.
Fortressing is building the foundation I need to get through crises. It may mean battlements, it may mean reinforcements. It might mean that a wall goes up. I say this to explain my natural tendency toward introversion, and I -in NO way- want to give the impression of rebuffing ANYONE! Sometimes I need time to adjust, and I will call this fortressing.
I welcome your love, concern, your interest, your help, your PRAYER.
Please know this.
With keeping you informed (and thankfully I already had this blog going strong) here in this convenient way I trust that you all will be aware of how to pray.
I'm still going to be the crazy prophecy freak I've always been, so those of you who come for updates may have to scroll over that if it's not your cup of tea.
Speaking of tea, please come and sit with us in the garden by the fish pond and enjoy a "spot" of it. I will try to have a batch of "Trim Healthy Mama" scones in the oven for us to share. You will have a darling Corgi at your feet adoring you, and a black lab who will think you came to see her.
Our yard will become our place to get through this hard month--if Minnesota ever gets a few dry days this summer!
Tuesday, June 17, 2014
We come back Friday for a spinal tap and the first clinical chemo treatment.
The spinal tap from surgery Saturday was positive for cancer, but the percentage of bad cells was only 2% so treatment remains as first prescribed. THAT is something to be thankful for.
I think I am still in shock. I'll get home tonight and have a good cry with my friend on the phone and pick up tomorrow morning. At least I hope I can.
Day by day.
Ed looks so much better. Color has returned to his face. The blood transfusions have surely helped. The chemo is already warring against those errant cells and the counts are greatly improved. Smiles from the nursing staff!
Prednazone and Risperadone will increase his appetite, so we are praying his blood sugars will be kept down.
I am thankful we have been gradually implementing " Trim Healthy Mama " this spring, which is a no sugar diet.
We've cheated some. BUT NO MORE. :)
Ed likes Cherry Berry, so we'll have to bend the rules once in awhile...
Nuts and protein, low carb veggies, good healthy fats like coconut oil and butter. Stevia is the sweetener recommended.
It's very doable.
We can do this!
Getting the lawn mowed and other normal stuff done will be top of our list to do as we transition into our new reality. You regular readers know that life at Corgi Hollows was never dull in the first place, right?
I have only nice things to say about Children's Hospital Minneapolis. It is huge, and cheerful and comforting.
We met a steady stream of professionals yesterday, all pleasant and helpful. They have an ingenious way to play bingo with the entire patient population via the cc TV. "The Dude" is a funny guy who appears to be the hospital clown. Ed won a Bingo game right away, which meant a prize for him.
It appears that businesses send volunteers to help with patient activities regularly. Something to consider helping with in the future.
There are times when you realize how removed you've been from the world of ill when you're blessed with overall health.
This is eye-opening for me. Despite my own health woes I am realizing how truly easy it's been dealing with out patient issues! We're in for it now!
Pray for us. My prayer, with my recent study of worship, is that God be glorified in this whole thing. I don't know how that will be. I just want you to pray that for us.
We must live the appointed days! Our God is gracious and merciful. Our God is LOVE.
No worries, no anxiety. We are called to trust. Can we do it? Only with supernatural strength.
Ed's been watching alien super hero movies here at the hospital. Demons and devils...how truly powerless the devil is really, to those who belong to Jesus. Our God is the one who saves. The ONLY one who saves. We can trust him, especially in this.
Ed will love visitors at home. This month will be long. He will have virtually no immune system, so please be healthy when you come!! ...Just these first months, for sure.
He's looking forward to seeing his cats, and the dogs are looking forward to seeing him. Margaret says they aren't eating. :(
Sunday, June 15, 2014
This morning the doctor reported that Ed's hemoglobin is up 2 points to 7. His bloodwork is looking improved remarkably. The doctor was pleased.
Ed feels better. We are sensing the path that stretches out before us.
Chemotherapy is not something you choose lightly. I am an advocate of natural remedies every time.
There is an element of trust in every move you make, and what has happened over the last two days was mostly TRUST.
I know we can trust God in everything. Every moment moving forward. He is in charge of all our moments--be they hard or happy.
Knowing that eases my mind regarding motives.
Ed is in good hands here. Great hands.
We are fortunate. ..blessed to live in a city where medical facilities and care are second to none.
Saturday, June 14, 2014
Ed (not his real name, for you new readers) has been suffering from tonsillitis this spring. Several visits with doctor improved the sore throat, but his pallor seemed to worsen as the weeks went by.
On Tuesday we visited with his psychiatrist and he suggested another visit to our family practice doc. I went home and made the appointment. ..for this upcoming Monday.
It was Thursday when things turned worse, and Urgent Care seemed a real necessity by 9:00 pm that evening. We were thinking an antibiotic might be a wise thing to start again.
Well, the doc at urgent care said, "This is weird."
Blood tests revealed a problem. Low hemoglobin at first, she was thinking a blood transfusion necessary. She called the emergency room of our local hospital. Ed was on his way there.
It was there we heard the word "luekemia," and learned that Ed's red cblood cells and platelets were really low. We also learned that his white cells, though normal in number, were messed up. The nice doctor advised us to make tracks to the emergency room of the children's hospital.
Don't wait, he said.
My husband was on a business trip, and his plane was delayed getting home. My text messages weren't to reach him until he landed at 1:00 am in Minneapolis.
"Meet me at the hospital," I text messaged to him.
At the Children's hospital ER there were more hints of what was to come.
"We're 85% sure this is luekemia," said the ER doc.
"We will admit Ed for a biopsy and further tests."
That 15% became very much hoped for, still we were anxious to find out WHAT was going on in Ed's body.
The biopsy was positive for leukemia, we were going to be in for it.
That's how a visit to Urgent Care ended in a hospital stay.
Now we wait while a port is put in, a spinal tap is done, and the first dosage in a three year course of chemotherapy meds is administered.
What we ask and wish for is your continued prayers for Ed.
I am relying on super strength from our Heavenly Father, as our whole family is doing.
There are millions of thoughts and feelings swirling in my head. I am grateful to Elisabeth Elliot for her excellent advise to "do the next thing." Crises can take over our lives, and the best way to get through each moment is to KEEP ON.
So we are going to keep on.
Quite frankly I have no idea what we're in for, and I'm going to have to learn a lot quickly.
God knows. He's got this.
Friday, June 13, 2014
Ed at the hospital
Please Lord, I know you are in charge, but I'm feeling like waving a white flag of surrender about now. You've promised that you will take care of everything. You told us that EVERYTHING works for GOOD for them that love you.
So I will trust.
Ed was told that he has A.L.L. today. My stomach sinks as I write that. Acute Lymphoblastic Leukemia.
Tomorrow the doctors at Children's Hospital put in a port and he starts his chemotherapy.
Here we invest the world to help him get well.
I do not forget that many lose their lives daily elsewhere to terror. Life seems so cheap in those parts of the world.
I'm living out a nightmare that every mother dreads.
But there is peace. There is knowledge that God has this. God's got this.
Your prayers are holding back my tears, and helping Ed to resolve recovery. We need them desperately. My husband is a rock in a sinking sand land. He needs your prayers too. So pray, please.
Pray for his siblings who ask, why?
Ed has a fighter spirit, a great hospital, probability, and his own faith on his side, but there is going to be difficult circumstance to endure.
Bi-polar meds and chemotherapy drugs don't mix well. We know this. Will you pray?
Yes my world has become darker.
Yes, I long for my Savior to sweep in and make it all right.
This is the task that we've been given: Deal with leukemia. Others have done it for many different reasons. People live for so many objectives.
We live to please God, in everything, and it is completely OUT OF OUR HANDS.
I'm numb right now, and I know Ed will be too. He feels lousy, so the hope of improvement drives him forward now.
But those scary difficult treatments and days to come....
Lord, please help.
Wednesday, June 11, 2014
Worship is a touchy subject.
I am reading "Worship, the Missing Jewel," by A.W. Tozer. In it Tozer reminds us what the purpose of man is, and I will summarize:
*To worship God*
God created a being in His image to be able to appreciate and glorify Himself, man. We have an eternal spiritual nature, a mind that can understand much, and senses to appreciate His creation. In short, we can worship God, and that is our purpose.
Since the fall of mankind we are sadly short-comers. Most of the human race continues in abject blindness regarding our purpose. Most people have put themselves or their ideals on the throne of their worship. Idolatry.
When I read about our purpose I am struck by my natural response to think that worship is not enough--that worship is too simple, too easy, too boring.
Then I dig deeper and find that worshiping God is anything but simple, easy or boring.
Worshiping God is aligning myself with Him and His holiness. It is abandoning my own ideas of right and wrong and accepting, glorifying HIS RIGHTEOUSNESS.
My standards no longer matter. My wants, likes, preferences are insignificant. Only GOD'S "preferences" matter, and I have an idea of what that might be.
Dare I speculate?
-A clean heart, repentant, free of ALL sin. 1 John 1:9: If you confess your sin He is faithful and just to forgive your sin and CLEANSE you from all unrighteousness. You will have turned away from your sinful behaviors and you will have a pure heart before God. Examine yourself, says the Scripture.
-Awe. Our God is an awesome God. Loving, merciful, kind, and awe-inspiring. Does the word respect have any meaning? Is my behavior respectful as I worship? Or, am I letting it "all hang out?" We will all be on our knees, or flat on our faces before our Creator. This is worship.
-Love. Our hearts will be filled with holy love. We will see others as God sees them, giving Him the glory for their beauty and gifts that He gave them. God is love. Love will be integral to our worship of Him. He who has not love is as a clanging cymbal....Let's think about that.
So what kind of worship does God require? Hardly the kind that makes me or any other human "happy."
Wrong focus there.
Let's lose the self-centered focus and draw close to our Lord and Savior. Only then will our worship be as it should be.
They weren't right for her, they are perfect for me. Thankful.
Remember, health issues are never interesting to chat about, but I must reiterate that mine can be very affective, and they have been lately.
Pain, sickness, bi-polar issues, moods, seasons! How about barometric pressure? Hormones, age, injury...
Blah. Doesn't it just make you BEG for our Lord to come back an save us from our human condition?
I wish. I pray. I say, Maranatha.
These shoes are like Birkenstocks of old, but these are made in Israel, and they are wondrously comfortable! They came just when I needed them. God and my friend are good.
It's very green outside. These late spring days are always my favorite times of this season. There are few flowers out there, as the roses haven't started to bloom.
The lilacs had their brief moment of heady glory. I am waiting for my peonies to open. Their greens are looking tall and healthy this year. The apple trees have budded and flowered, no frost to thwart the crop this year. Even our cherries look promising! For the long, long winter, this spring seems well.
I heard there are ice bergs on Lake Superior still-----and June is half over! Amazing.
Spring days are long now. As the solstice approaches I get a sadness. The dark days are again on their way.
Ed suffers. Tonsillitis did a number on him. He remains pale and weary. I am trying a new cure on him, giving him refrigerated acidophiles 3 times a day. I am hopeful that he will benefit from it.
I wish natural cures would be speedier.
Having tea in the garden with a new friend today. She's on her way, so I'd better get the water on.
Monday, June 9, 2014
Monday, June 2, 2014
Thoughts from these full spring days full of birdsong and showers.
We're still in the thick of activities. Cherie returned home after a week at her grandparents. I am happy she's home. She had a wonderful time.
Eldest son moved out of his apartment today with his wife. They leave for his first army reserves assignment next week. Exciting.
Margaret found out she nabbed a lifeguarding job today. This one will involve a lifetime adventure, so I am very pleased for her.
Today Ed and I listened to a cd set from Diane Kraft about nutritional behavior. We are excited to see how a regiment of acidophilus will affect our neurological systems.
Music, new and inspiring, daily brings joy. My son gave me "voces8" "Eventide" for mother's day. I strongly recommend it!
Margaret and I take turns pressing play on the cd player.
Blue skies and thunderclouds, vividly green fields and lawns, flowering trees of every pink hue...
Sound and color.
If Christ comes soon, as we expect, we are having a brilliant beginning to this season of days. I sense His calming assurance that He cares so deeply for each of us.