Saturday, November 29, 2008

Saturday morning, November 29

I am sorry I was unable to update the blog yesterday. It was a bad day.
Marianna's fight is not going as we had hoped. It is essential to contact us before contacting the hospital please. Let us bring you up to speed so Marianna does not have to.

You can reach us at:

Richard 714-292-0045
or
Cynthia 714-292-0042

Thank you for your ongoing support, we are all going to need each other.
CW

Wednesday, November 26, 2008

Wednesday, November 26 morning update

Frustrating. Dr. Schlessinger called this morning, while Marianna's abdomen is healing nicely, her lungs continue to be a challenge, and her breathing is getting worse. Even more frustrating, I have caught the flu bug the boys had over the weekend, and cannot see Marianna. She has banished all of us (Ward family) from the room, in case any of us are "carriers", and while we cannot blame her, it does not make it easy when ee know she is struggling again. We are keeping up with the nurses and doctors by telephone, and may send Cynthia to stay with her if warranted. All we can say is please keep praying, her lungs have to stay strong for the chemo. Sorry for such a bummer report when we are trying to gear up for the holiday. I comfort myself with the knowledge that the Lord had every opportunity to call Marianna home last week, and especially over the weekend, indeed on Friday night/Saturday morning we believed He was doing just that. But He chose to heal her then, and I have to cling to the belief that He has a plan for her future and will work this out.

Tuesday, November 25, 2008

Tuesday morning, November 24th

Today is our daughter Elizabeth's 20th birthday, with extra celebratory appeal that we have Marianna to share it with! We will visit tonight with the whole family and Gelato so she can participate.

While visiting last night the cardiopulmonology kid (they keep getting younger) mentioned Marianna had mucus in her lungs when he listened. I'm sure they will get it taken care of, but if you are going to call please listen for her to get tired or winded. I suspect she feels so much better that she is overdoing it. By all means call, but as usual, keep it short and really listen for her breathing, OK?

Thanks to all.
CW

Sunday, November 23, 2008

What a Difference a Day Makes!

Wow! Amazing! I would call our girl's recovery unbelievable, but then it IS Marianna. We have heard back from all of her doctors, they are all THRILLED at her progress. The collapsed lungs are back and working on their own, the bowel is working, and she is sitting up running the hospital from her bed. So if ya wanna chat, have at it. If she is tired, she will shut off her phone. Just try to keep it short still, and listen for her struggling for breath.

She will need to stay for at least another week, but then if she is doing this well they can start a low dose round of chemo and begin beating back the cancer! She will need to stay there for that as well, it sounds like. So we have some time before she comes home, but that's OK, she will come home to us when she can.

I have to share what she would call a "Grammie story". On Friday night, Marianna was out and out delirious, the Adavan really made her not herself, and she spent the night talking to people who were not there. She needed someone to be with her all night, to keep from pulling out tubes and wires. To say it was the low point was an understatement. But in her confusion, talking to someone clearly not in the room, we heard her mutter, "But we don't let little things like that bother us, do we?" Even in her worst time, she was still Marianna. And God Bless her for it.

Saturday, November 22, 2008

Big Victory! WooHoo!!!

Get our your best Southern Baptist accent for a great big THANK YA JeeZus!!!!

Dr. Tran (pulmonologist) was able to remove a LOT of mucus from her lungs, which will let her breathe. I will be honest, if they could not do that, we would have no choice but to honor her wishes and let her come home on Hospice to say goodbye. It was that bad. Her lungs and the tube in her nose were so miserable that she had to be sedated with medication that made her essentially incoherent. We have never had a more heartbreaking 24 hours in our lives.

So we are up and over a MAJOR hurdle! Next step is to get her bowel to work. Until both her lungs and bowel are functioning on their own and she is healed from surgery, Dr. Park cannot start chemo, so we are in a race to get her body better before the cancer gets worse. So keep praying because it is working! We have a long way to go, but right now it at least looks like we are moving in the right direction!

She will still have a very sore throat for a few days, so i will let you know when she is ready to talk on the phone. She may even call out if she feels up to it, and again, if she calls out try to do a lot of the talking and keep it short, save her from herself please!

One of the big things we need to fix is the despondency she was in, so IF she continues to do well we MIGHT be able to get a few of you in for very short visits. Again, what she is like in the morning is not always the story in the afternoon (it has been a real roller-coaster ride) so I am reluctant to make promises, but if you want to visist, please call me and I can let you know how that might work, or not.

Thanks again, y'all must be really good at prayer, because something is working!
CW
714-292-0042

Small Victories, We Will Take Them Where We Find Them

Dr. Schlessinger (surgeon) called. He is concerned at the lack of "sparkle" in our girl, which has us concerned as well. We've never seen her like this. The good news is, he is removing the gastric tube that was snaked down her nose into her stomach, and was her greatest discomfort. So that should give her MUCH more comfort today. He will also let her have a drink of water, which does not seem like a big deal, until you go without it. So the quality of her day should improve, and we are grateful for that. Will report in after they check her lungs, but wanted to be able to say something positive for once.

CW

Friday, November 21, 2008

Friday evening, November 21

Not good. That's all I can say about today. Marianna's lungs continue to fill with the fluid that the cancer produces, and she struggles to breathe. She has begun to panic from not breathing, and the hospital has now put her on Adavan (I think I spelled that right) it is a heavy duty tranquilizer. She is really, really out of it now. You do not want to see this, and I am sure she would not want to be seen in such an undignified condition. Please do not visit right now. And clearly phone calls cannot go through, she cannot breathe to talk. I'm sorry.

Tomorrow (Saturday) the pulmonologist will do another procedure to look into the lungs and see if they can do something to help her. I will update again when that is done. We will also be asking Cynthia (caretaker, not daughter in law) to stay at the hospital to help care for her, you know how she is, she will not ask for anything, and refuses to "bother" the nurses. We try to be there to help, but we cannot be there full time, but we know she will let Cynthia help her, which helps us.

I hate to say this on a blog, but you need to know. The doctors need her lungs AND bowels to heal and function on their own in order to treat the cancer, but the lungs and bowel are likely affected by the cancer, so we have a closed circuit of misery right now. Marianna is tired of doing this. Being fed by tubes and emptied by tubes and having tubes breathe for her is the very thing she always feared. We need your prayers now more than ever. This lung thing needs to be resolved. Otherwise we have agreed to respect her wishes, and let her go home. It is going to be the toughest weekend of our lives.

Thank you all for your prayers, and your kind words. We are printing emails and comments to take to her as encouragement, and so very, very sorry we cannot ask you to encourage her in person. Please pray that they can deal with her lungs tomorrow so we can get her back in action and let her visit with the folks she loves so very much.

With all of the family's love,
CW

Friday morning, November 21

Marianna is still having a tough time breathing. The poor thing has a tube down her nose into the stomach so her newly reopened bowel doesn't have to work as hard, and then oxygen tubes shoved in there to help her breathe, and a sore throat from the breathing help while in surgery. So her throat is sore, voice nearly gone, and her oxygen levels drop when she talks. In short, no phone calls today please.

Feel free to email me with notes of encouragement to her, or post them here in the Comments section and I will take them to her. Cynthia_Ward@sbcglobal.net.

At 3pm today Richard and I will meet with her new oncologist, and get a better feel for where we go in the future with the cancer. Up until now we have simply been dealing with what the cancer was doing to her body. Once she is stable from that we can work on what to do about the cancer that created this mess. Will report in after that.

Thursday, November 20, 2008

Thursday morning, November 20

Good morning,

Richard was at the hospital this morning, and Marianna is doing a little better. She is not in a great deal of pain from the surgery, which is a blessing. However, she does still have trouble breathing, and to keep her from stressing the new stitches we are still asking to limit phone calls please. Today's challenge is that she seems tired of doing this (understandable) so we want to keep her spirits up while not letting her talk. No idea how to do that, but there you have it. So if you would like to visit for a short period, that might be nice for her, keeping in mind that you need to do the talking and just let her enjoy your company and know she is loved. Marianna does occasionally sneak an outgoing phone call, which is fine if she is up to it between naps, but if she calls, again, remember to keep it short.

We were at the house last night for a bit, Cynthia is doing a great job of cleaning and getting ready for a homecoming, although we still have no idea when that might be. BUt it is a comfort to know someone is in the house and the neighbors are doing such a great job of looking out for things as well. Thanks to you all.

Wednesday, November 19, 2008

Wednesday afternoon post-op update

Our girl made it through surgery just fine. The doctor had to restitch the original surgery site. Her tissues are thin and delicate and did not hold the sutures, and when she coughed it popped the stitches. So the trick now is to keep her quiet and keep her from coughing, which tends to happen when she talks, especially on the phone.

We will be at the house for a short time this evening to tackle some chores for her if anyone in the neighbborhood wants to stop by. And if you cannot get through to her room, you can always call us directly. Cynthia is at 714-292-0042 and Richard is at 714-292-0045.

Also, for those doing chores at the house, we would like to ask you to continue doing whatever you were doing. None of us knows everything that is beign done, and rather than let something slip through the cracks, we figure let's just stick with the plan Marianna put in place. If you do not have time to continue, let us know and we can ask Cynthia to pick up some of the jobs. WE just do not know what to ask her to do. The only difference with Cynthia and Tommy at the house is to knock first, or call. Cynthia's cell phone is 714-875-9984, and just let her know you are coming over or knock on the door. Otherwise, carry on, please. We really appreciate all you folks do.

Wednesday, November 19, 9:20 am

The good news: the fluid in Marianna's lungs does not appear to be pneumonia, it is from the fluid that is produced by the cancer.

The bad news: she has been coughing so hard she split her stitches, and Dr. Schlessinger will perform another surgery today to repair that.

Marianna needs rest for this morning, so her phone is on Do Not Disturb at the front desk. I will update as soon as that changes.

I have a request for you all please. I was thinking of all the ways that knowing Marianna Ward has changed my life for the better, begining with the amazing guy she raised that I got to marry, and running through the way I see life with such a more positive light now. And I know she has changed many other lives in the same way. So I would like to invite everyone reading this blog to please post the ways that she has made your world a better place. Just click on the "comments" at the bottom to add your comment, and I will print these out on Thursday to take to her, and cheer her up.

Tuesday, November 18, 2008

Argh!

Sorry, just a minute ago I posted that she was doing better. The grandkids went to see her and reported that she is on an oxygen mask. The bit of comfort she had earlier is gone already. So please limit phone calls. SHORT visits in person may be OK, to sit with her, but do not ask her to talk, it frustrates her to talk with the mask so she tries to pull it off. I am sorry if you saw this post a few minutes ago, frustratingly she seems to flip conditions within a half day.

Also, the Patient Representative did call back, and we were able to express our frustrations with some of the care issues we have seen. She has promised to resolve this. So hopefully communication will get better from here on out.

1:45 pm Tuesday, November 18

Marianna came through the initial procedures this morning just fine, with no pain (other than the "bikini wax" of having the bandages abruptly removed-ouch! ). The doctor was able to remove 850cc of nasty liquid from her lungs, so she is breathing MUCH better now and her attitude is improved. She was pretty depressed and frustrated yesterday. (not her usual self at all, I know)

We are still waiting for the doctor to tell us what else needs to be done in terms of bowel blockage, and why she has fluid leaking when the cat scan showed no fluid in the abdomen. Discovering that the process is a lot of waiting around. Waiting for doctors to share information (or not) waiting for nurses to bring what she needs (or not) and now we are waiting for a Patient Representative to call back so we can complain about the lack of cooperation. Frankly we are just not seeing the level of care we have come to expect from St Jude's in the past, and that is frustrating.

Otherwise Marianna is in good spirits and breathing is MUCH improved. If you would like to make a SHORT phone call or visit, it would brighten her day, as long as she does not overtax herself.

Will post again after we speak with a doctor to find out what is next with her abdomen/bowel issues.

Update: Tuesday morning November 18

9 am, Richard is on the way to the hospital, and I will follow shortly. We did get the chance to FINALLY talk to the doctor. The fluid in Marianna's lungs (creating pneumonia) and re-filling her abdomen is called "ascetis" (I hope I got that right) and from the little info we got, the fluid appears to be produced by the cancer itself. The fact that she is filling so quickly with it very likely indicates that the cancer is more agressive than originally believed, which is clearly not good news. Today they will do a cat scan to see what else is happening, it appears her bowel is either still obstructed, or has been impacted by more tumor growth, which adds to her discomfort. Then they will do surgery, which will drain the fluid from her abdomen, and her lungs, and address whatever is found in the cat scan of the bowel. The surgeon was clear that this surgery will make Marianna more comfortable, but we need to be prepared that it does not "fix" her. I'm sorry.

We are in for a long day. I will take my laptop and try to find a "wifi" connection to update as we go along, but please spend the day in prayer. We also face the 2 year anniversary of the loss of Stan on Wednesday the 19th, so it is a tough week all around.

I am sorry that she has been unable to talk much, I know it gives everyone comfort to hear her voice, but she really is having a tough time breathing. Perhaps after the surgery we can get some of you in for short visits, if you do most of the talking....again, thank you for prayers, and your incredible friendship. I am sorry to have to update you with such an impersonal venue as a blog, but we are all very, very grateful that Marianna is blessed with so many loved ones that this is the only way to realistically keep everyone in the loop. May we all be blessed with too many friends to keep up with individually. Our love to you all.
CW

Monday, November 17, 2008

Update:

Marianna has pneumonia. Please pray. She will have surgery in the morning. The doctor will remove the fluid that has filled her abdomen since the last surgery, and remove the fluid from her lungs.

No Calls For Now Please

I am sorry to report Marianna's bronchitis is taking a turn for the worse. She is having difficulty breathing, and trouble talking on the phone. We need to let her rest for right now. I will post here when she can take calls again, but for right now let's let her sleep. This morning she had a chest x-ray to determine if this has developed into pneumonia. I will post here with the results as soon as I know how she is doing. Thanks for your help and your prayers.

Sunday, November 16, 2008

Caregiver Moving In

The Lori Way folk will have new neighors as of Monday morning. Our family friend Cynthia (the delightful woman who helped Marianna care for Stan) will be moving into the house in the morning. She will spend her time getting settled in and dealing with basic housekeeping (I admit it, we have not cleaned out the fridge since Mom went to St Jude's, the leftovers need attention) and Cynthia is just the woman to do it. Two Cynthias in the house will get confusing, maybe we can call us Cynthia W and Cynthia M. So if you see an unfamiliar face at Marianna's house, it is OK, Cynthia and Tommy belong there.

Sunday, November 16, 2008

Sunday morning:

While fires rage across So Cal, the air supply system at St Jude's seems to be dealing with the smoke, and as of Saturday night Marianna was not affected by the air quality. She continues in good spirits, and is doing better at sitting up and eating clear, light foods like Jello. She still has a few benchmarks to hit to show she is strong enough to be released, so it will be a few days yet. We will post as soon as she is ready for home. In the meantime she hopes to be transferred to the Transitional Care Center (TCC) at St Jude's, where the rooms are little more "homey". Marianna was very impressed with the unit when Stan was there and would like to spend her recovery there. If she is moved we will post here with her new room number.

We continue to get conflicting information, what Richard and Cynthia heard the doctor say and what Marianna heard the doctor say are totally different messages, so we will not pursue any reports of her long-term prognosis until we have had the chance to talk to an oncologist. To say her surgeon lacks communication skills is an understatement. Nice guy, certainly seems a brilliant surgeon, but coomunication between Marianna, the surgeon, and family is difficult, which becomes frustrating for the rest of us. For now she is as comfortable as the hospital can make her, and far better than any of us expected her to be. Our sweet lady is a fighter, and the sunny disposition is helpful. All is well for now, although she does still tire easily.

Saturday, November 15, 2008

Friday, November 15, 2008

First post, so if you have not been up to speed, here is what is happening with our beloved Marianna.

On Thursday, November 8, Richard ran her to the ER at St Jude's for what she thought was digestive issues. By Friday we realized we were in for much more than that. Marianna has advanced, stage 3 ovarian cancer, which has spread to the rest of her abdominal cavity. She had surgery on Wednesday, November 12, and the surgeon's prognosis was not optimistic. However, we all know Marianna, and she is not ready to accept that answer, she is prepared to fight if she can. So at this point we are trying to get a second opinion, so that she can make informed decisions on her care. Someday I may share the saga of frustration at navigating the oncology system, but for now we will focus on what we can do to help Marianna. All I can say is, doctors need to figure out that it is a medical degree, not a new religion establishing their own deity.

As of Friday, Marianna was sitting up at a table and chair, eating clear foods like broth and Jello, and has been taking short walks in the hospital hallways. The cancer had completely blocked her colon, but she has now learned to care for her own colostomy care, and like everything else she does, she is taking that in stride. Marianna welcomes visitors, although we do suggest keeping visits to 15-30 minutes, as she tires easily.

Marianna has always been prone to bronchitis, and had developed the infection before surgery. As you can imagine, coughing with a fresh incision is painful, and talking for extended periods brings in the shortness of breath, thus the need for this blog. If we can keep you updated, then her conversations can be short and happy, and we can take better care of her while making sure that those who love her (and we are legion) stay up to speed on her condition.

Either Richard or Cynthia will update this blog daily, more often if news comes in. You may also contact us directly. Cynthia's cell phone number is 714-292-0042 or email at Cynthia_Ward@sbcglobal.net

Thanks for loving our girl.
Welcome to the Ward News Network. We have designed this blog to produce daily updates for Marianna Ward's progress. Please check here first BEFORE calling Marianna. While she welcomes chats, she tires easily, and updating everyone on her condition uses up her energy before she has a chance to really visit with you. Thank you so much for your prayers and friendship, you all mean the world to Marianna, and her family, and you are an improtant part of her recovery.