Happy New Year Mom!

----Remain strong as you begin your treatment---

2009 will be a great year and we will all be together one year from tonight to ring in 2010.

Love,
Tim

Wednesday, Wednesday

Drum roll, please.

Today, Leenie rallied so well that at 2 pm Dr. Cross gave her her first dose of chemotherapy! It is the second drug of the combo which will be given twice a week for 3 weeks. Since she didn't have any bad side effects (except fatigue - expected), he's decided to give her the big gun, Platinum (what with her hair, she wouldn' have it any other way) which will be given once every 3 wks. She told brother Philip that if she responds well (ie, doesn't have bad effects that would interfere with her nutritional build-up process), she may go home Thursday. (He was present when she told him, so telephonic mis-communication can be ruled out.)

So. Leenie had to go back to the hospital because she was dehydrated & the disease had robbed her of her appetitie and interest in liquid intake (certainly a first for those who know her). But (& hopefully there won't be any more of those). When I approached her on the bathroom floor, retching, pale, her eyes glazed with fear & cofusion, she asked, "Am I dying?" I responded that yes, she was, but not imminently. Rather the disease had apparently advanced significantly and rapidly, with malice and stealth, unwelcome and delighting in its clever, powerful repulsiveness while she slept. Tossing its head back with victorious laughter at the sight of her - helpless, terrified, reduced to a cold, unsavory bathroom floor for her mattress, it did not consider that discovering that she had time, choices and acres of down-blanketed support, Leenie, as she told me later upon receiving the news - "No primary site." - "I plan on getting better."

We then gave each other the Eucharist and packed quickly, quietly - about to go out into the cold night (cold was simply an annoying companion) to seek, find and then use each quill carefully, thoughtfully acquired and put at the ready to face, suffer through, battle with and, God willing, vanquish the enemy.

Let's make sure we're all with her, armed with the innocent confidence of the little ones, so that we are not just with her but actively feeling, tasting, smelling, hating that which our collective will might destroy with the Cross our mighty sword. . .

Lorane

-

Tuesday evening wth Leenie

Hi,

Brian & Paul found Leenie a bit restless but very surprised & excited to see them. Unfortunately, she was having pain (which was apparent) but it was 6 pm & she'd not asked for pain meds since the morning. Shortly after getting medicated, she was relaxed and joking about beating the patch system by sneaking out & smoking without it.

Obviously, the pain meds must be given regularly & not on demand. Otherwise, chatter remained "newsy/breezy"; she loves her docs; saw Gordon Ryan for a long admit visit late Monday (they were talking about putting a tube in her intestine for food feeding when she comes home); Dr. Cross stressed wt. gain & builiding strength for chemo. All in all she seemed to be focusing on getting well enough to be treated as an out-patient.

When it was obvious she was getting tired they left BUT, throughout the visit she slurped down 1/2 of a giant chocolate DQ shake!

"Of human bandage" arrived home clueless in Virginia Beach but ver enthusiastic about Leenie's admission. He says it's a huge positive step forward & will see her after work today. There's a cute Obama throw blanket in the gift shop that he has his eye on for her. . .

Off to my appt,

Lorane

,

Additions for Tuesday?

Tuesday, December 30, 2008

Tuesday evening





Hi,
Well it's 7:10 pm. Brian & Paul left to see Leenie (& bring her her favorite chocolate shake from the DQ near the hospital) @ around 5 pm. They said they would call if there were any significant medical info. They have not.
Leenie, as is her wont these days, will be overjoyed to see them, exhaust herself chatting and then want to read. And read. And read (you get the picture) The sun room at our house is now her library, supported on the large table by old cannon bookends (as in, "touch these books and feel some gun powder). She also loves to watch movies (an adjacent library) and lose herself in "the other".
Now her brother Philip is really a more interesting story (while we're on literature) , of the not-quite-superhero variety. He worked days yesterday & called around 5 from the Norfolk airport. (I only got his message as we were a tad busy w/ Leenie @ the time) Seems his cell phone wasn't working; he would be leaving for Miniapolis for a deposition shortly and getting in too late to call with his hotel info & phone contact for Tuesday am; he 's to return home this evening around "dinner time". As I said at the opening of this tripe, it is 7:10 pm. Sooo, our dear and glorious physician has no idea that Leenie went in to the hospital yesterday; apparently has difficulty locating/using public/hotel phones and will be missing "dinner time" @ Linbay (and I worked so hard to make it special). I thought we'd go together to see Leenie but it appears the hour will be past several bed times.
We can rest easy knowing Leenie is in good company w/ yummy DQ and nothing urgent to report. As for me, here we go with photo aggravation. . .
Lorane
,
Obviously, important updates will take precedence - anyone heard from PGJr? - I'll conclude that saga "of human bandage" as it unfolds. . .)
Posted by Lorane at 4:03 PM 0 comments

Tuesday




Hi,
Phillip got off @ 7 am - Bless Brian. We've been re-grouping, physically & mentally. Have not heard from Leenie but I'm sure they are keeping her busy & getting her on just the right mix of meds & oral food & liquids.
I know she needs some paperwork for the social worker who will be applying for her Medicare disability. This lady also has the Medicaid forms for Ohio. Paul has just arrived so we will see if Leenie wants to deal with this today and, if so, bring the data.
It will be good to have 2 cars so that everyone can set their own schedule and pace with Leenie's preferences.
Last night I tried to send some good photos & failed miserably. I'm trying (very) again. . .
Lorane
Posted by Lorane at 11:08 AM 0 comments

Need help to get recen t p-osts (Tuesday, 12/30) to ALL followers

Hi,
Lorane here - or somewhere. None of my Tuesday, 12/30 posts are on the blog. I "mistakenly" clicked "new post" on the "manager" blog on my "dashboard". (can you believe this drivel???)
Therefore, to see any of my news & pictures for Tuesday, I guess you have to click on "Lorane" under contributors, and select the posts on the dashboard that is followed by only 1 person.
Brian, if can read this, can you correct this remotely? I have a 10 am doctor appt tomorrow & will take the computer with me. Meanwhile, I hope you can see the events of Tuesday, 12/30.
Lorane
,

Monday, Monday

There should be some recent pics with this but they didn't work

Update:

We are about to take Leenie to the hospital for some fine tun ing before chemo. She just hasn't been able to get strong enough for treatment.

She will be admitted to Norfolk General Hospital tonight for IV fluids and good nutrition, nausea & pain control.

Dr. Cross could not find the precisde primary so he will proceed with lung and treat with chemo aimed at eradicating that type. It is strong stuff so it is necessary to be strong to take it.

Pray and be with her. I'll try the pictures again and keep posting. . .

Lorane

Thanks to Everyone for the Kind Thoughts!!!

Hi Everyone,

I just wanted to write a quick note on behalf of the Huber Brothers to thank you all for your kind thoughts and prayers. We haven't yet heard from Dr. Cross, et al., but I'm sure it's because they are double checking all the tests to ensure the most effective conclusions are reached. Please keep praying and posting, and we'll keep you updated as soon as we hear any news.

~BDH

Link to Xmas Slideshow

http://s369.photobucket.com/albums/oo137/bdhuber28/Linbay%20Christmas/?albumview=slideshow

The eve, the day the day after. . .

Hi,

Christmas eve continued to boil & bubble with last minute shopping, wrapping, mailing, repairing "Frosty" - our black, top-hatted snowman built into, around, atop and under our red mailbox. Tim is a wonderful elf - he helped w/ everything, especially food prep. There was lively chatter throughout the day & all of a sudden, it seemed , it was time for the 40 min trek to the Newport News Airport to get the "boys".

Leenie wisely opted for a nap. We finally returned at almost midnight. The young, frightened, confused, angry, excited Huber men either kept their own counsel or practiced "being strong" on the long ride home. Once there, discomfiture ruled for a bit. "I'll show you where you're sleeping>"; "Great. We'll put our stuff in our rms."; Finally, "Where's Mom"; "iI'll get her up."; "Are they HERE??"; "They're waiting to see Mom". And, one by one, each went alone for a private greeting which Leenie tailored such that each of her lads could feel comfortable being sad, scared, happy, excited & SO glad to be with Mom.

Amazingly, appetites surfaced, bloomed and culminated in our favorite, messy, relaxed, easy, take forever to eat & chat over meal: tomato/garlic/spices bruscetta on fresly baked flat bread exquisitely carved by Brennan and bowls of jumbo shrimp in a white wine/olive oil/bay leaf & spices sauce. We ate in the living room, around the tree, dripping, dipping and finally mopping every drop of extra sauce with an olio of torn ,fresh-baked focacias & crusty Italian breads. It was lovely, chatty, at times seriously tutorial w/ Uncle Phil fielding questions but mostly warm, filling and fulfilling in expectation of the Christ Child's coming.

Christmas day began after 4-5 hrs of sleep, in the form of Jennie, Ross & Emma - all rosy cheeked, laughing, re-uniting and getting to know short cousins. Very soon after, Philip, Robyn, Declan, Molly & Patrick arrived - all bearing brightly lit faces and colorful packages. The joy was loud, palpable and on-going, with everyone filling up @ the groaning board and merrily opening presents while PG3 trid to capture the magic on camera.

Very short people and Leenie then napped while the games - football, baseball, car-racing (Declan & Molly in the red Mustang which their big cousins had chaqrged all night) the inevitable testing of the "things Santa brings" while the evening repast was being prepared.

And the big surprise - just as dinner was about to be claimed & taken to a favorite chair, there was a loud knock,equally loud barking by Bridie & Murphy as they greeted Jetty and we all squealed as Matt, Julie & 3 mo. + Mia made a very big SURPRISE arrival! It was glorious disarray again - with Leenie enormously energized, eating heartily while visiting & holding the peeps & greeting/enjoying catching up with the FAMILY.

Once again, we didn't see dessert & major packing/farewelling-till-the-morrow until after midnight.

The Christ Child - not surprizingly - had given all of us 2 glorious, joyful days which personified His coming - Joy to 828 Linbay Drive, all who dwell within this holy, happy night and all who are there in spirit & love because this Family is blessed!

Give thanks & praise - and if you're not out looking for bargains tomorrow, tune in to Leenie's 12/26/08!

Lorane

e

Happy, bustling Christmas Eve. . .

The day has dawned but I think the events of yesterday have yet to - fully and in a way that we can understand. Uncle Phil has been "saving lives" in Suffolk since 7; I've been trying to plan today & tomorrow re: feeding the entire fam (hot dogs roasting on an open fire is sounding good); and Tim & Leenie are still abed after an exhausting yesterday.

Bless each and every one of us and our families with the light of the Christ Child as it surrounds Eileen and all of her health care providers;

Enjoy and give thanks for our many blessings and the excitement of living each day of the future;

Follow the lead of the little children in our midst - the glow of anticipation in those smiling eyes, that inability to contain the breathless thoughts of the bounty to befall the world tomorrow;

Will write again later - after the last minute (hours) tasks have been stumbled through. . .

Lorane

,

Post- Op Note

Well, Leenie was finally released from the OR and is awake and progressing in stages to where all tubes and oxygen devices can be removed.
She complains of pain at the mediport insertion site - which is perfectly normal. She has received pain meds and has a prescription for oral medication at home. Her Heart Rate, Blood Pressure and oxygen saturation are good. She has no recollection of the OR so she must have responded very well to the general anesthesia.
Dr. McGraph came in to speak with Tim, Leenie and me. He was very kind but straightforward. The frozen section revealed what is called "Non small cell" carcinoma of the lung. He was able to retrieve large chunks of several of the affected lymph nodes and the cells from each were included in the frozen section. Now it will be placed in Dr. Cross' capable hands. First, the biopsies will go to the lab for a variety of staining procedures geared toward narrowing the diagnosis from non small cell to a specific type of non small cell carcinoma. Once that determination is made - probably by Friday b/c there is a temporal element to each testing procedure - Dr. Cross reviews the data.
When Dr. Cross is satisfied that he knows precisely what type of lung cancer Leenie has, he will select the chemotherapeutic agent that is specific to only that cell type and implement a regimen of treatment which includes, dosage, frequency, duration of treatment; additional follow-up testing to determine the efficacy of therapy; adjunctive medication predicated on the findings of the follow-up testing and, perhaps most importantly, in what way(s) has her clinical picture changed, ie, is she becoming weaker, showing signs of improvement and if so, in what areas; the status of her nutrition based on blood work and THE CLINICAL PICTURE. You can have great, textbook lab results but clinically demonstrate an obvious need for something to increase strength, comfort, mental clarity and the presence/absence of a developing secondary infection, ie, urinary tract, sinusitis, etc from a compromised immune system.
It will be a minute by minute, hour by hour (you get the picture) progression with signs and symptoms that require investigation/treatment or, just a slow, uneventful course of very gradual improvement. Needless to say she will be closely monitored. But she must also be evaluated mentally & spiritually by those who know and love her best such that we can provide appropriate support and advise the medical team of changes that, were they to know her as we do, they would address.
For now, the next few hours are going to be rough re: physical comfort/healing from an invasive surgical insult AND digesting the words spoken by Dr. McGrath. There was no element of surprise but the reality of hearing out loud from the man who has just experienced with all of his professional senses/experience the reality of Leenie's illness and announced it with great dignity, respect and care that one could possibly have hoped for, is sobering, frightening, yes, but, with time, will echo in her mind and give her the strength and fight that we all know she has to address this announcement head-on - and with the help of God and her God-given abilities, STRIKE BACK, NOT OUT.
Knowledge, the biggest hurdle, is behind us. We know the enemy - a disease to be cured, not a state of fear, confusion and impotence.
Let's move on with confidence and love - and, yes, a few toasts to the future.
Till tomorrow,
Lorane & Tim
-

We're Off. . .

OK guys,
Mom just went up to the OR. The OR next to the valve case became available and they will be getting her ready for Dr. McGrath in there. So the timetable has changed:
When valve case over, Mom's mediastinoscopy will begin.
It will probably take from 12-2 hours.
Dr. McGrath said that if, in phase I, checking all reachable branches of her airways, he finds a node, he will take it for study.
Then he puts the scope with the "pac man" biter into the mediastinal space and retrieves 1 lg, entire node & several chunks from surrounding nodes.
Finally, he places the mediport under the skin around the R clavicle. It will be filled with heparin (blood thinner) as the body reacts to anything foreign/plastic by clotting.
Once that's stitched into place, she will go to recovery where he anticipates 1-3 hrs. to have her wake up, remove breathing tube and reach a point of alertness/stability such that he can tell her what he found & discharge her. Tim will be here with me to take her home.
She's still scared but wants to get it over. By now, they've given her some "feel good" meds IV in preparation for anesthesia so she's a happy camper.
It's OUR turn to work - PRAY!
Lorane
,

Tuesday at the Heart Hospital

Arrived & met with Dr. McGrath. Leenie extremely frightened and nervous. Unfortunately, a young man who needs a new valve stat will be first. Leenie has had blood work and an EKG and will now rest until she is called for surgery at 2PM. Dr. McGrath says if an adjacent OR opens up while he is closing the young man, they will bring Leenie in and get her medicated & ready.
ISSUES:
'To answer some questions/clear up misunderstandings, Leenie has around 10 ENLARGED lymph nodes. Lymph nodes are the body's sewer system and should not be enlarged. As the doctor said, when you hear the sound of running hooves, think horses, not zebras. So the enlargement tells us that the lymph nodes have been invaded by a disease. When he gets his large samples today, they will do a frozen section and be able to tell us that she has a particular kind of cancer - based on the shape of the cells.
' Then the path lab people will begin their studies involving the reaction of these cells to various stains and media, the end result, hopefully, identifying the source of the cells or the primary site of the cancer.
' Finally, Dr. Cross will take this information and select a chemo drug and protocol that will kill these particular cells beginning Monday.

As for today, Dr. McGrath expects that his surgery will take approximately 2 hrs. and that she will be able to go home this evening. I think the hardest part for her is from now until 2 PM. We can only hope that she will fall asleep in a "quiet room" with a warm blanket & no cares.
Philip will get Tim from the airport and bring him here so he can see Mom when she wakes up.
Till later. . .
Lorane
,

Leenie's Pay-Off Monday

Seems one of the boys spoke to one of his "boys" (short, curly hair, halo) and. . .

Dr. McGraph's office called us back after we called for an office appt. tomorrow. Rachel, his nurse told me to have Leenie at Dr. McGraph's office at 8:00 AM - SHE WILL HAVE HER SURGERY TOMORROW! Dr. Cross is just as excited. He says from start to finish the operation will take about an hour but post-op recovery will probably be 5-6 hrs. b/c she's never had general anesthesia before. She should be home by dinnertime.

So today, we thank God and fatten this little chicken. She'll not eat tomorrow & we want her strong and in fighting mode by Monday morning. Let's get those words of culinary encouragement going, guys.

They will remove one entire node (about the sz of 3 grapes) and samples from the others so that the lab can be certain 1) all mets are from the same primary and 2) the primary cell sample is in its correct anatomical shape, can be replicated by comparison with other samples and anwers the question "WHERE'S THE DAMNED PRIMARY?" after which Dr. Cross & the lab guys will do their magic with staining, etc. to yield the precise chemotherapeutic agent that will kill this devil - starting Monday, through her already-placed mediport at the Virginia Oncology Center Hospital in Norfolk. The staff is a specialized team using a precise protocol.

Tomorrow, I'll be at the hospital & try to get my computer to connect w/ a network. If I can't, I'll call Philip, Julie or Jennie and they can post progress. It's all good. . .

Lorane

,

Important Update

Hi,
Today was a benchmark day. Last evening, Dr. Cross, Mom's oncologist, called to say that although the gastroenterologist was willing to do a procedure to get a much larger biopsy from the metastatic nodes in the mediastinum (area between the lungs), he could not do it until Jan. 9 which was unacceptably too long a wait.  We need a large biopsy now so that Dr. Cross will be able to start chemo w/ the correct agent - hopefully by Monday.  He called this afternoon. (Mom was sleeping b/c we had 1) gone to the salon for a haircut, 2)gone shopping @ Talbot's & Joseph Bank. That was A LOT for her but she was having so much fun it was worth her long nap afterwards).

The scoop from Dr. Cross:
He's arranged for a surgeon to do the biopsy - a bit invasive but necessary - either late Tuesday night w/ discharge in the am OR early Wednesday am with discharge in afternoon.
IT ALL DEPENDS ON OR AVAILABILITY. DR. MCGRATH CAN DO EITHER DAY BUT NEEDS AN OR TO DO IT.

So, Mom will have general anesthesia; Dr. will check out all of her lung passages to be sure there is no blockage causing her cough; get a nice, complete node (no needle aspirations or lg. cuttings). Cross wants an entire mass so he can identify with certainty the primary source & select with certainty the exact chemo agent to use to kill it.  He does not think she will be susceptible to any hair loss but her immune system will be compromised so we must be very careful re: visitors w/ flu, sniffles, coughs, etc.  Lastly, the surgeon will put a "Mediport" in place. Thise is a semi-permanent, large bore IV catheter which will be stitched in place & used for the chemo treatments and clamped off when not in use.

The discomfort factor is de minimus and Dr. Cross' plan is excellent re: getting started with the big guns. The radiology totally wiped out the grapefruit on her shoulder (Henry) but there will be a lump for a while until the remaining dead tissue is re-absorbed by the body.

So that's the plan for now. Dr. Cross is always a pager away and he, like all of us, is praying that the procedure can be done late Tuesday night so Mom can be comfortable and rested and excited enough about PROGRESS that she will eat, drink & be merry with the Fam & the newly born savior. Hope you get this missive,

God Bless,
Lorane

Leenie Sunday

If only Eileen felt as strongly as Emma about pasta, we'd be ahead ofour game. So far today, I've only managed to coax her to drink 16 ozs. of vitamin water. I'm afraid Nurse Ratchet will have to pay a visit. She must move around or let me pat her back to get the lung secretions moving out. And, like it or not, she will eat some pasta salad. I know Declan and Molly wouldn't take hers.
Perhaps some phone calls will get her going. So far it's been a big nap day following a restful night.
Will let you know how things went @ bed time.
Lorane

Update From Aunt Lorane

Hey everyone, please follow this link to view Aunt Lorane's update on Mom:

http://lorane-momsprogress.blogspot.com

I'll try to get the posts posted on this sight as well...

Christmas/New Years Itinerary

Mom,

Here's the itinerary for The Boys' visits to VA over the holidays:

Tim: 

• Arrives: Wednesday 12/23
  
• Departs: Friday 12/26
  

Brennan: 

• Arrives: Wednesday 12/24 
• Departs: Saturday 12/27
  

Phil: 

• Arrives: Wednesday 12/24
• Departs: Tuesday 12/30
  

Brian: 

• Arrives: Wednesday 12/24 
• Departs: Friday 1/2
  

Paul:

•  Arrives: Tuesday 12/30 
• Departs: Friday 1/2
  

~BDH

Rogue's Gallery minus One!

It is amazing what a little soap & water can do!?!?!?!?!? Eileen was so proud of us that evening! It was the next morning when we should really have a picture of this group!!!

Merry Christmas to All!

Nyero sends his best wishes & prayers for a Very Merry Christmas to everyone, especially all the family in Virginia this year!

Woof! Woof!

Yesterday's Appointment

Brennan spoke with Julie last night, and apparently there's still no conclusion as to the orginating source. Also, he mentioned that the growth on Mom's neck (which she refers to as Henry) is not cancerous. This is confusing to me. Can someone with info post an explanation?

Thanks!

~BDH

Good Luck Today, Mom!!!

We're all praying for you.

Posting Messages

I've adjusted the settings to allow anyone to post comments now.   Please post your email address if you'd like to get "author" access, which allows you to post new posts.  

Hopefully this helps.

~BDH

Mom's Treatment

As far as I know, Mom's last radiation treatment for this round will be on Wednesday, when we'll hopefully get more news. As of right now, the doctors are still unsure of the originating source, which is important to know for purposes of selecting the appropriate chemo. Uncle Phil mentioned that they may have to do another biopsy, this time of the nodes in Mom's lungs. Lorane and Phil, please feel free to elaborate on this since I really have no idea what I'm talking about (not that that's stopped me in the past).

~BDH

Last Weekend

Paul and I went down to Va Beach this weekend to see Mom, who was in good spirits. We all listened to an old recording, which Lorane recently had digitally remastered, from a 1957 holiday party at the Leavy's. Apparently, drinking and singing runs in the family. I've downloaded the recording to digital form, with the goal of sending copies to anyone who wants it (I'll get a copy to Aunts Margie and Kath soon). I may also try to post it to this blog. It's pretty neat. Incidentally, it's also good if you're looking to brush up on your latin declensions.

~BDH

Initial Post

Hey everybody,

I started this blog so that we could all stay "in-the-know" on Mom's progress. My goal is to update it as soon as we get any news. It's an open blog, so I want to encourage everyone to participate (post photos, comments, anecdotes, etc.)! Also, if Mom wants to post her thoughts (or corrections to my grammar) she can. This way, she doesn't need to feel obligated to talk on the phone if she's not up to it.

~BDH