GOOD NEWS ABOUT MARK

Thank you all so much for your prayers. Apparently our West Virginia-born guy is going to go a few more successful rounds with the brain tumors! He is one tough dude!

He went to Charlottsville, they did the pre-op and detected a baby tumor starting to manifest and when they did the gamma knife surgery, they zapped the larger tumor but the baby one as well.

Our guy was home by 8 p.m. the same day, with a headache due to the screws they had to put in his skull, but otherwise in great shape and not needing another MRI for 3 months!

Thank you all. We know your prayers are helping to sustain him!

PRAYER REQUEST

Mark is going to Charlottsville, Virginia on 5/24 to have yet another brain surgery, this time with a gamma knife which is, I'm told, minimally invasive and which will deal with the new tumor which is about thumb-sized. The entire family will be there with him and I ask that you all join me in praying for this brave man and his stalwart and loving family that they have strength, healing and many future months of happiness.

PRAYER REQUEST

My dear friend Sandy, whose breast cancer has been in remission for some little while, sent this email over the weekend:

Hi,

The good news is that I have now lost 80 pounds !!!!! YEAH!!!!!! The bad news is Cancer has returned and is in my left breast this time. I have had the biopsies done at OHSU and will go there on Wednesday for an MRI and a PET Scan on Wednesday and then a consult with the doctor on Thursday to create the plan. The ugly would be if it has traveled farther than my left breast and lymph nodes. I believe in the power of prayer and I am using it every day. I know God knows the plan, and I will be strong enough emotionally to handle whatever it is.

Have a great Sunday. The sun is Shining and it is a beautiful day.

Love, Sandy

Stiff upper lip is definitely her style. Needing prayers for her is mine. She's a good lady and a retired teacher who has never done a bad thing to anyone, ever. Please pray for her return to health.

Thank you.

HARPER UPDATE

Harper ended her earthly journey this morning. Her pain became so intense that her family felt that they needed to take her to the St. Louis Children'sHospital, where she passed away.

She only lived less than two years, however, she brought many of us together in our prayers for her and her family, and in our realization how precious life really is.

Thank you all for your prayers on Harper's behalf, and for Amber and Ryan to be able to get through what they have yet to face.

Sincerely,

Anna Marie

h/t Piano Girl

PLEASE PRAY FOR HARPER - AND HER FAMILY

This tiny little human is enduring suffering and pain that would demolish an adult. Please pray for her.

A miracle is too much to hope for at this time, but your prayers for less pain for Harper, and the strength for Amber and Ryan and their immediate families to get through this would be very much appreciated.

Harper's left eye has been affected by the cancer, and she can no longer close that eye.

Thursday Oct. 28, 2010

Written by harper's mother, amber:

It's been a rough week for Harper and all of us. Last friday night her pain began bothering her again. She was up most of the night tugging at her thigh and groin, only wanting to sleep in the floor. So that's where we've been every night since....crawling around the floor in pain. Her methadone and oxycodone doses have been increased multiple times yet barely provided minimal comfort. She is very good at distracting herself during the day, so each day we thought she may get better and be able to rest. Unfortunately this did not happen. Our hospice team and Childrens doc decided to put her on continuous morphine IV through her broviac. Our first pain med of choice was fentanyl but as luck would have it there is currently a nationwide shortage of it and we aren't able to get it for home care until Friday. The morphine drip was started yesterday at 8am at home, and by 3pm we realized were still going to have a tough time getting her pain controlled, so we were encouraged to take her Children's Hospital and get started on the Fentanyl. (Harper has had adverse reactions to morphine in the past as it makes her itchy, emotional, and very irritable so we didnt want to mess with it too much.)

We arrived yesterday around 5pm and were able to be directly admitted to 9W....no ER yay! (thank you Angie!!!!) We thought the fentanyl was going to be the answer, but along with the chain of events this week, it proved to only make things worse for Harper. As her pain continued, we continued to increase her dose only to max out the meds she was able to have and give her a terrible fit of itchiness and extreme distraught. She was given a drug to relieve those feelings as well as a nice dose of Ativan to help her calm down, and then we were able to get a room to ourselves to work out the pain control for the rest of the night. (thank you Selah!)

I think it was around 12-1am that we decided to start her on an-another narcotic- and begin the process again of figuring out the appropriate dose to ease her pain. At 2am she went in to respiratory distress due to the amount of narcotics and various drugs given to ease the pain and calm her. She was given yet another med to reverse the effects of the narcotics and bring her out of the distress. After what seemed like a very long time, she began breathing normally on her own and we were back to square one. The Dilantin was started once again and she seemed to get an hour or so rest in before she was ready for a bolus and an increase dose. That is the process for the early am......wake up in pain, get bolus, wait, another bolus, wait, increase dose, etc. Thanks to our AMAZING night nurse, Megan, for doing what you do so well! We are so blessed and fortunate to have such a caring staff on 9W that love and care for Harper.

We also had day 3 of radiation on her eye at 8am this morning. She is always sedated for this which made things a little scary given all of the narcotics and Ativan she was given. As usual, Harper came out like a champ and is now sleeping comfortably on Ryan's chest:) We plan to hang out here until we have a full nights rest with little to no pain.

Things are becoming more and more real each day of what exactly is happening to our baby. Her eye is huge, her pain is intense, and she is very exhausted ( as are we!). I can't even begin to explain the new insurmountable, extreme sadness we feel. Being back on 9W is bittersweet, a place of hope for us for so long and now a place of comfort as we most likely will not return (unless we have more pain issues). Many new children are on the floor yet a few of our old friends remain. When does it stop? Such a vicious cycle from one child to the next all rotating in and out of treatment.

Please, get out your A-game and pray that Harper's pain is controlled very soon and she is able to go and rest and enjoy her time once again! Pray that Ryan and I find a way to hang on by a thread and somehow get through this. Pray that our families do the same.

Thank you for any prayers you can offer up to God for this sweet little girl and her family. Anna Marie

PRAYERS REQUESTED

Our beloved Anchoress, Elizabeth, is dealing with a very sick dog at home. Her beloved Alle - the dog who speaks to her and eats bananas - is very ill and needs our prayers. I know Alle is a dog, but she is also a beloved family member and one of God's creatures. In fact, I think that our domesticated companions are a living symbol of God's love for us.

Please pray for The Anchoress and for Alle.

Thanks.

GOOD FRIDAY INTENTION

On this Good Friday keep Capt. Richard Phillips in your prayers. The US Navy is on a collision course with the pirates who are holding him. Pray for his safe return AND heaven only knows our President lacks the "cojones" to rescue him properly!

H/t Third Wave Dave Logan - a fine fellow at the best and worst of times!

UPDATE: You guys pray good! Thanks to the U.S. Navy snipers and the grace of God, Capt. Richard Phillips has been freed from his captors. Don't tread on the U.S.A. you scurvy bastards!

PRAYER REQUEST

Sonia Robinson, a longtime friend of my sister's, is very ill due to cellulitis and she is currently on oxygen. Please offer a prayer for her safe recovery.

Thanks.

AMAZING NEWS ABOUT MARK

If you can believe it, his surgery was on Tuesday late afternoon and yesterday (Wednesday) he came home from the hospital! There wasn't a room for him and he really detested being trapped in ICU and after the doctors checked him out thoroughly, they didn't see any real reason to keep him in the hospital so he was released to go home! Of course, it helps that he has an enormous extended family, including his beloved granddaughter Jillian and his wife and daughter who all live in the same house, so last night at about 6:45 p.m., he was snoozing in his easy chair whilst pretending to watch "Hogan's Heroes" on TV.

As a result of the first surgery, he basically lost his sense of taste, which eventually returned. No such side effect this time, another bonus! Of course, please do keep praying for him but for right now, things are looking pretty good at his house!

PRAYER REQUEST, PART TWO

In addition to Sarah Fyock and Andi, please offer your prayers tomorrow morning for my dear friend Joyce's husband Mark who will be undergoing his second neurosurgery due to the brain tumor that cannot be entirely removed. What we're wanting at this point is quality of life, as well as extension of life. Unlike Andi, Mark WANTS to live and my deepest wish is that what he wants, he gets. He's a wonderful man and his family still needs him.

As to Andi, she is in a medically induced coma, has refused any surgery that apparently could restore her to fairly good health, has insisted that the breathing tube be removed (she briefly regained consciousness on Saturday) and will be on "comfort care" until the inevitable comes to pass. While I recognize that the woman I loved so dearly effectively died on the day that David died, still I mourn deeply the woman who was my friend for nearly 40 years and the horrendous waste both she and her son represent to the world. Both of them were kind-hearted, deeply funny, bright and productive in many, many ways. He has been missed since his death, as has she.

Sarah Fyock is awaiting a heart transplant. She is a toddler and her parents are moving heaven and earth to restore her to good health. I pray that somehow, some way this will come to pass.

ABSENTING MYSELF FROM THE SITUATION!

Being of sound mind and short fuse, I will be taking next week off. In fact, all 3 of us in the carpool are taking next week off. There's more than one reason but trust me, the traffic in The District is sufficient provocation all by itself! The influx of tourists, both in vehicles (driving badly) or on foot (ignoring the walk/don't walk signals at considerable peril) would be reason enough. The intrusive motorcades seemingly required whenever Himself goes from Point A to Point B or anywhere in between (and he isn't even inaugurated yet), but especially (for some insane reason) during rush hour, would be reason enough. Taken together - we're getting out of Dodge! 51 miles South of Dodge to be exact. There is no way in hades that the mess will be cleaned up on the day after the inauguration and call me crazy, but would YOU want to be in town while 5,000 porto potties are being flushed out and carted away? I thought not!

Primary reason for our choice to be "in absentia" is Mark, friend Joyce's husband. As I've blogged before, Mark's first surgery last year could not get all of the primary site cancerous tumor that had lodged itself in his brain. Despite aggressive chemo and radiation, the tumor has decided to return so this coming Tuesday, the neurosurgeon will be operating to remove the new growth from Mark's brain. At the same time, he will be placing a titanium plate to protect Mark's brain from insult - which was not done during the first surgery because the neurosurgeon knew that another surgery would be required. After this, no more surgeries. Whatever happens, happens apparently. This is, incidentally, the same type of tumor that is afflicting Senator Edward Kennedy, so one would suspect that within a few months he too will be needing additional surgical intervention. As the oncologist explained, when a brain tumor is caused by a primary cancer elsewhere in the body, it's easier to combat. When it is a primary site tumor and the rest of the body is cancer-free, that's a whole different and more deadly situation.

Please pray for Mark (and their entire family) if you are so inclined. They are a delightful family and although Joyce is the strongest woman I know, this has to be a huge weight on her shoulders every minute of every day. Sis and I will be there at the hospital on Tuesday and will be visiting Mark in the hospital whenever Joyce deems that it is a good idea. Throughout, we will be offering up our most sincere prayers that Mark's days far exceed the estimates given by the medical team.

Since my attention will, understandably, be directed elsewhere, it is probable that I won't be posting much to this blog. Take care and enjoy the insanity on Tuesday 1/20/09.

PRAYER REQUEST

Five days per week, I spend about 3 hours daily with my friend Joyce - carpooling to and from our Washington, D.C. work places. During those commutes, the conversations are wide ranging, frequently funny, sometimes slightly insane but always provocative and deeply interesting. During the first 6 months of this commuting routine, Joyce frequently told hilarious stories on her husband Mark who is a West Virginia good old boy and a great deal more. Last January, however, the stories pretty much changed when Mark was diagnosed with a primary site brain tumor - a glioblastoma which is a particularly aggressive tumor. We've all heard a great deal about this type of cancer due to the subsequent diagnosis of the same tumor in Senator Edward Moore Kennedy.

At that time, Joyce was told that because it was a primary site tumor, complete removal of it was virtually impossible and that even removing as much as possible did have the risk of Mark losing his sight, his cognition or his ability to walk. As it happened, Mark came through the surgery fairly well (although he did tell the doctors in the Recovery Room that he had just had a hysterectomy - pure Mark humor to be sure) and has since been going the chemo and radiation route. He refers to his once-per-month chemo regimen as "taking my hormones" - do you see why he delights us?

Unfortunately, last Friday, Joyce and Mark received the news that the tumor had returned and now on January 20th Mark will be undergoing another brain surgery. He is not yet 60 years of age. He has 4 adult children who love him and a great many grandchildren who adore "Poppy" with good reason. His particular favorite is his eldest granddaughter, our beloved Jillian, who with her mother has lived with Joyce and Mark her entire 9 years on this planet!

Please pray that Mark comes through this approaching surgery with faculties intact so that he can enjoy whatever time remains to him with his wife of 38 years and his children and his grandchildren, as well as the assorted animals in the family - all of whom have unique relationships with him - and those of us who are "adopted" family and love him too. Of course I want Mark to have many more years of decent health but if that is not in his future, please pray that whatever time he has left will be free of pain and filled with love as long as possible.

I can and do say "God's will be done" but at the same time - I really hope for everyone's sake that the next year or more will be good ones for Joyce and Mark and their entire family.

I'M TAKING A FEW DAYS OFF!

Time to take a deep breath, sit back and get some rest and then decide what steps I would recommend the GOP/Conservatives take in order to roar back in 2 years with a more reasonable version of the U.S. Congress. One thing that is a comfort is that Mitch McConnell will be the "go to" guy for us in Congress. He has proven pretty consistently that he actually does possess some cojones, something sadly lacking in our GOP elected officials of late!I'll be back by Monday. Meanwhile, keep on praying for our nation's future and safety from threats both foreign and domestic.

URGENT PRAYER REQUEST

The Anchoress has posted an urgent prayer request for a military family facing the unthinkable and indescribably painful:

I cannot tell you his name - but if you could storm heaven for “Beloved and his family” at this time - for miracles if God wills them, for peace and consolation if not. The need is great. Please keep these people “in your pockets,” so to speak. Perhaps offer something up for their behalf, keeping this in mind: Now I rejoice in my sufferings for your sake, and in my flesh I am filling up what is lacking in the afflictions of Christ on behalf of his body, which is the church…(Colossians 1:24)

Certainly prayer for Beloved and his family, as well as all our active duty service men and women (including my family's beloved Navy Guy) should be (or should become) a routine and important part of every day. It isn't so-called journalists, politicians or "neighborhood organizers" who keep us free, but rather the military men and women who daily risk their lives in service of their nation's honor and safety. God bless them, every one.