Wednesday, March 11, 2009

I'm still here

This is the first time I've been able to look at my computer for a month. Sorry I kind of disappeared; I was pretty much out of it although I'm starting to come back. I'm going to let Diane do the talking. She fished around and found some e-mail addresses where she sent updates. Again sorry that some people were not included. I appreciate all of your love and support and prayers and will try to not disappear again!
Ronni

2/13/09

Thank you for your calls to Ronni’s room and cell phone, and for the many emails you have sent to her recently. I have retrieved some of the messages and I wanted to send this message to let you know her status. At the moment, she is not answering either her cell phone or room phone, and is not able to check emails. She has suffered some complications due to various factors and is not alert to talk. However, since yesterday, there are some signs of improvement. The doctor told me this morning that ‘we are not out of the woods’ but there are some encouraging signs – better blood counts, stable heart rate and blood pressure, and some indications of better kidney functioning. The 3 kids and Jim were there today even though I know she didn’t want them to see her as she looks right now, but I felt it was important, as did they, for them to come and it was a worthwhile visit.
I know you all love my sister and are concerned about not being able to connect with her. I am hopeful she will pull out of this, and then she’ll be back on line, but it will likely be a slow process.

2/15/09
Many of you have called or sent messages for information about Ronni so I am sending this as an update.

As I said before, she has had many complications, the most pressing of which is kidney failure that has led to a number of other problems including fluid build up in her lungs and as well, she is now in a form of a coma. Last night they moved her to the ICU where she is being closely monitored, awaiting a special bag of platelets (which were supposed to arrive yesterday at 4:30 but are being held up at the Red Cross and won’t get there until 4pm today.) At that time, they will begin dialysis with the hope that it will take off sufficient fluid to help regain consciousness.

On the positive note, her white count doubled since yesterday, which shows some signs of hope that the transplant is proceeding well. Her vital signs are stable. She is a real fighter. Her children saw her on Friday when she still had some level of consciousness, and she knew they were there for which I am very grateful.

I will be closely monitoring the situation and will let you know how things go. Unfortunately, in the meantime, my mother-in-law Joan Koven died yesterday at the age of 81 after a long illness. She was a wonderful woman, elegant in every way, and always treated me as one of her own. It is the last of our four parents to pass, so it is a difficult journey for my family. Assuming Ronni is stable, I will be going to NYC tomorrow afternoon for the funeral, returning Tuesday night.

Thank you for your support and I’ll be in touch in a couple of days.

Diane

2/18/09
Ronni was moved yesterday from the ICU back to the 6th floor – pod 6A and is in better condition. Her vital signs are stable, her white count and platelets are up, and the doctors are pleased with her progress overall. She has now had 2 rounds of dialysis and they see some improvement from this process, particularly in the fact that she is more alert. She opens her eyes occasionally and can follow some commands, but is still not talking and not fully conscious, yet it is progress. I believe that some folks have tried to call the ICU to get an update on her condition, but unfortunately they will not release any information to anyone other than me, so for now, I will send updates every couple of days to keep you informed. I know she has many friends and relatives who love her and we appreciate the support.

Diane

2/23/09
Thank you for your calls and emails and prayers and soup and brisket and cookies and other signs of support and love to us and to Ronni. We very much appreciate it.

It has been a difficult few days and we aren’t out of the woods yet.

The good news first: her white count is good and there are positive signs that the transplant part of what has happened has gone well.

On the other hand, she continues to have multiple complications – infections, fevers, problems with blood pressure, kidney failure, and GI bleeding… some of which is under control or being treated through dialysis or medications, and some that is being tested further.

The team of doctors are superb as are the nurses on her floor which are close to being in an ICU type setting. She does have periods of being alert and wants her phone, books, and computer back – all of which is a good sign but I’m sorry to say she is a long way from being able to access them. I don’t think she is in any pain, but is very weak and asleep most of the time.

We (Ben, Joe, Katie, Jim, and me) had a long meeting with the oncologist today. I wanted her children in particular to hear directly from the doctor what we are dealing with and what the treatment plans are. There are many elements that are being addressed individually and collectively. We are taking each day as it comes while being fully aware that things can turn for the worse at any moment. The kids will come back tomorrow for a visit as well.


I’ll leave you with this - I was there quite late last night after having been called back to the hospital by the oncologist. As I sat in the reclining chair next to her dozing off and half watching her sleep, I visualized us asleep in our beds at 1200 Fifth Ave… happier times and in its own odd way, a sense of peacefulness.

I’ll be in touch and thanks again for your love,

Diane

3/2/09
Hi All,

After 3 very difficult weeks, Ronni is finally showing some signs of recovery. I don’t want to get too far ahead of myself here, but there are several good things, and yet of course a few challenging ones as well.

On the positive side, her white count has been stable and normal for a few days. She is engrafted, which means the transplant part of this ordeal has worked, for now. They have an interesting method of figuring out how much of her cells are from the donor and how much are her original ones – called a chimerism study (sp?). She is now 100% donor which is fabulous. I don’t think she ever got to 100% in the prior transplants. Other good news – after multiple studies of her gut and liver and other things, they have not found any new signs of problems.

There are some issues they are still following and treating, namely her kidneys are still not working. She continues to have dialysis every other day and that is definitely helping, but they are hoping after another 2-3 weeks, they will see signs of kidney recovery. Her heart rate has fluctuated as well, but it is being treated. And the damn CMV (a virus she has battled off and on for a while even before this transplant) is back, but also being treated.

All together though, she is making progress. Tonight for the first time in about 3 weeks she had something to eat – pureed fruit and yogurt – and not much of it, but nevertheless, it was food.

There was one very good sign of the old Ronni this week that had nothing to do with numbers or levels or medicine for that matter. One of the Physician Assistants who has been around for a few years and has known Ronni for quite some time was in the room the other day. When she walked in, instead of asking her about counts, etc., Ronni inquired about whether Nancy was doing another Ironman race. Apparently they had talked at length at one point about the swimming portion of the Ironman (you have to be careful not to get run over by other swimmers I gather) and Ronni wanted to know if Nancy was in training again for this or for the mini Ironman. Both Nancy and I were thrilled.

Ronni here: That's it for now. Will try to do an update in the next few days. Biggest update so far: I have gotten off dialysis, I hope for good, because my kidneys seem to be waking up . Doing some physical therapy and taking little walks with the walker. It's amazing how fast you can get deconditioned. Baby steps and patience, right?

25 comments:

hockeychic said...

So good to read this update. It sounds like a very difficult road you have been going along and hopefully it keeps smoothing out from here on out. Just so happy to read this today.

Howard said...

Dear Ronni,

Checking your blog for an update has become part of my day. I'm very happy to read these entries. Sorry to know you've been having such a rough time and hoping this corner is permanently turned.

Sending you warm & good wishes from Montreal.
Howard

Susan C said...

I have never in my life been so happy to read a blog post.

Sending lots of love and good wishes your way,
Susan

Nelle said...

I was checking several times a day to see if there was a post of any kind. I had hoped someone would be posting if you were not able to. I was worried about you. A few days ago I emailed Susan who had an update from someone else who said you were engrafted and that was so encouraging. I am sorry to know you have had so many difficulties. Each day I pray you will be stronger and your counts will be up. We can all rest a little easier tonight thank you from the bottom of my heart for taking the effort to keep us updated.
Sending get well hugs,
Nelle

Terri said...

I too am sorry that you've had a rough time. What a trooper; you are a pitbull! I have been checking for update several times a day so thank you both so much for the update.

susiegb said...

oh I'm soo happy to see even a few words from you Ronni!

I'm sending heaps of Aussie sunshine and happy good wishes to speed your recovery ... :)

And thank you Diane for your long post. So glad Ronni that you and your 100% new doner blood cells are back on the road to recovery.

Samantha MacRae said...

Ronni, So glad to get your update. Have been checking your blog and was very worried. You are a wariior woman! OMG - what you have been through. Thinking of you.

Sam xx

barala said...

Yea, the blog is back. Small steps, then bigger steps. Before you know it, walks around the pond. You should be really proud of your progress these last few weeks. Next time I visit we're going to do laps around the corridor.

Mikha'el said...

keep taking the steps no matter how small, glad to get an update as have been wondering how things are going. many send positive vibes your way.
get better soon

Anonymous said...

SOOOOOOOOOOO HAPPY to hear from you. Baby steps- keep fighting!!!
Huge healing thoughts,
Lea

carolyn and chip said...

So glad to hear you are up and walking..hope you'll be making progress every day..you are an ironwoman to all of us who care about you....you should know that just hearing from you makes so many people's day...love, carolyn and chip

Mieke said...

Ronni! So glad to get an update! I've been keeping track by talking to Barry, who says that his visit with you was great this past week. Lots of chatter and talk of you getting back to walking around and in good spirits. I'm thrilled there's been yogurt involved, sounds like your whole system's been pulling a sleeping-beauty! Baby steps lady, each one builds to something better... love ya.

PJ said...

Ronni, so good to see you writing again and off that machine. I may stop in this weekend.

donna said...

Ronni, There are no words for how happy I am at this moment. You probably don't even remember when Deb D. and I visited you some weeks ago. You were so sick! Seeing your new post is just the greatest. Can't wait to see you. Your back on the right track! Love you!

Cat said...

Thank you for the updates. I'm glad to hear that you're still fighting the good fight, and I am sorry it's been so rough. I hope it's okay for me to link to your blog from mine. I'm raising money to fight leukemia, after losing my sister to the disease nearly 30 years ago, and I wanted my readers/donors to understand better why I'm asking them for money, why it's so urgent and important to me. You write so well, and you explain so well what we're fighting for, and what you're fighting for. *hug*

(PS: If it's not okay to link, let me know and I'll take it right down.)

Wendy S. Harpham, MD said...

Dear Ronnie and Diane,
Thank you for taking the time and energy to keep your cyberfamily updated. Like others, I've been checking a couple of times a day. Since you just underwent your third sct, the usual mantra of "no news is good news" didn't hold. So I enforced my "no news is no news" mantra. On the chance that you were too sick to blog, I stepped up my hopes and prayers for you, hoping at the very least you would somehow sense the positive energy.

Over the years, I have seen patients hang on a thread for a prolonged period of time after a repeat transplant, make an excellent recovery and then live full rich lives (with their illness moving steadily into their past history).

While going through the illness and recovery, it feels like "forever." But amazingly, it is possible for these tough times to shrink into a vague memory. I hope and pray this for you.

Hang in. With hope, Wendy

Anonymous said...

Dear Ronni, so happy and pleased to hear that you are slowly moving forward one baby step at a time. I have been thinking about you every day.

Sending you my very best wishes from Scotland
LR

PriestessT said...

Ronni,

So good to hear good progress - especially about the dialysis. Your body seems to be waking up with the new season. Thank God.

Jack Neary said...

Hello, Ronni....Jack Neary here...hoping and praying that your recovery continues steadily, in pace with your amazing spirit...

Diane said...

I couldn't resist commenting that it never ceases to amaze me how many people love you... not that I question it because as our parents used to say, "What's not to love!" but still, it's so wonderful that so many people are behind you. Watching you day by day over these many weeks and months is further evidence of what a fighter you are, so resilient. I know that you have a long road ahead, but I have every confidence that you can do it, one step at a time... and I'll be there along with so many others if you need a hand

love,
Diane

Anonymous said...

Hi Ronni,

I am incredibly happy to see that you are back blogging, off dialysis and doing some walking. Yippee!

pam said...

Dearest Ronni,

i'm with Susan...never so happy/thrilled/elated to read a blog...

As Tommy said in a call from Switzerland, -- he often called to see how you were, --your courage through this ordeal has helped all of us along, too...

and Diane, i'm at a loss for words -- and that rarely happens as you both know,-- for gratitude and admiration for the Gordon girls...truly your wonderful parents' gals...

Runni, See You on Monday...in hope, xop

Susan said...

Awww..this is great! So happy to hear from you. Keep up the baby steps. We're behind you all the way. With love, Susan, Gene and David

Anonymous said...

Hi Ronni: What a joy to hear from you. I've thought of you so much and missed you even more. You are an inspiration and an amazon woman.

Love,
Meryl

Jim said...

Ronni,

You are the Ironman, for certain. We are so glad you have battled back and pray for continued strength and recovery. Being a runner is serving you well.

Like everyone else, Dori and I thought of you and checked the blog very often. Reading Diane's entries hits home. By the way, Diane definitely is cut from the same block.

Eat, sleep and be merry, Ronni.

Love, Jim and Dori