Updates on Marianne from her sister Laura

 

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2/2/04

 

Sadly, Marianne’s fight for her life came to an end in the early morning hours of February 1st 2004, a year and a day after her initial diagnoses.  In spite of this, the family has urged us to continue going forward with the last fundraiser as planned. Lee and Sydney, along with the McLelland’s and Fuller’s need our love and support now more than ever. The family still has many bills to pay, as this difficult year has been a strain both emotionally as well as financially. Please make plans to attend the fundraiser event. It will be a positive and uplifting tribute to Marianne’s life!

 

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2/1/04

Our beloved Marianne went to Heaven this morning. She went peacefully in her sleep and we are comforted knowing that she will not have to suffer anymore. 

 

We will be coming home tomorrow and will make the arrangements for her service.  I am guessing that it will be Wednesday or Thursday and I will let you know as soon as I have the details.

I know that many of you will want to send food, etc., to Lee and Sydney and we are asking that you do so through me for right now. We feel it would be difficult for Sydney to have a lot of visitors at this time.  I will be home late tomorrow so please feel free to call me at home on Tuesday at 770-599-9457 or on my cell at 770-845-4743 and we can make arrangements. I only live a few miles from their house and can take it to them right away.  Thank you for respecting our wishes.

 

Please know that Marianne and our family have been so blessed and comforted with your prayers and outpouring of love this past year.  She knew every day that all of you were here for her and for us and it has helped us more than words can ever say.

 

God Bless you all and I send our love to you!

The Hudsons, McLellands, and Fullers

 

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1/28/04

 

I think I have figured out a way to send email to everyone from Texas. I have divided up my group and will send it out four times. I hope this works. Please let me know if I lost anyone.

 

Marianne was able to see Sydney again today.  She is working hard at her physical therapy and has a fighting attitude!  She continues to amaze and inspire me. I can't even begin to describe it to you. 

 

I know that God is listening to our prayers and will continue to give all us of strength and courage.  So many have written about their children praying and friends that don't even know us.  He is reaching all of us through Marianne and will be here for us no matter what lies ahead. 

 

Marianne sends her love and feels the blessing of your love and friendship.  She is a blessing to us as well!

 

Laura

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1/26/04

 

This is from Kent. He is back home by the way, but he isn’t sure how to use Laura’s list so I am forwarding these on his behalf. When Laura gets back in town and is settled she will be taking over these updates again J Lisa

 

Hello everyone this Kent.  i just got back from texas and am trying to catch up on life on the homefront. Marianne seemed a little better before I left today.  She is very much alert and responds well to any questions she is asked.the last week there has been a rollercoaster emotionally. I am sure you all can imagine. News changes quickly as do options and suggestions. The staff at the hospital deserves alot of credit. They treat Marianne as though she was their daughter or little sister. Their emotions and feelings are just like ours. Love and care is everywhere you go out there.
  I have seen alot in the last week. Tears, laughter, sorrow, joy and inspiration just to name a few. Marianne is by far the strongest person I have ever known. I feel so helpless and weak. But her strength and determination keep me going. Friday seemed as though it was the end. Marianne had a seizure and fell. I was there. It was horrible too say the least. By all means it should have been the end.the staff worked quickly and stabilized her and stopped her bleeding. If not for the platelets that had been donated earlier by Robert Laura and myself, it would have been the end. Many of you have asked what can you do? Donate platelets. You may be able to save someone elses Marianne by donating, it only reqires a little of your time. Our friends and family support has been incredible.all of you keep us going and you keep Marianne going.
I thank god for all of you. The game is not over. Keep the faith I love you all  

Kent   

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1/26/04

 

From Laura:

Just wanted to let you know how things are going.  Marianne is having a pretty good day today.  She was able to do some physical therapy and has eaten a little soup and jello.  Big improvement!

 

I also wanted to express that we are continuing to pray as you are, that we have not given up on this fight and neither has Marianne.  We know that it is in God's hands and that we are standing on our faith and praying for a miracle for her.  Marianne is fighting and doing everything she can and we are rallying around her to give her strength.  Your prayers and strength are helping to support us.  Thank you and God bless you each and every one!

 

Laura

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1/25/04

 

Here is some news to warm your broken hearts.  Marianne was able to visit with her daughter, Sydney, yesterday.  They enjoyed seeing each other and Sydney was such a 'big girl' in the room with her. She was too busy checking things out to be afraid of all the equipment, etc. 

 

I am able to check my email so you can respond to my address if you want to. Everything else is pretty much the same.  We continue to draw from your strength and love. Thank you.

 

Laura

 

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1/23/04

 

It is tremendously difficult for me to find the words to say what I need to

say to you.

 

Marianne has suffered many complications over the past few days. The doctors

and our family know now that her life with us on Earth is coming to an end.

We do not know at this time how long she has but please know that we are

here with her and are sharing your love with each other and especially with

Marianne and Lee.

 

She seems to be comfortable and peaceful without pain right now. She is in

the care of the most incredible team of nurses and staff to ensure that she

remains that way.  She has slept most of the day but is aware that we are

here with her.  Lee's parents are on the way here with Sydney.

 

I know that many of you would like to come out here to see her and to be

with us. However, it is best for all of us to keep things as they are.

Marianne is not able to see anyone and we are drawing on your prayers and

strength from home.  Please know that we feel it, that it is sustaining us

and that it brings her an incredible sense of peace.

 

Marianne was able to see the CD from the fundraiser and read the song list,

etc.  It made her very happy and we hope to be able to play the music for

her if she is up to it.

 

Even though I feel email can be so impersonal, I want to keep on updating

you and this is the only way to reach the hundreds (maybe thousands) of

people praying for us.  You have each been such a rock for me and my family

and I know that you are always here for us. God bless you all!

 

I have wondered many times what do I pray for now?  I feel the answer is to

pray for peace for Marianne, pray that she is able to see Sydney again, pray

for her suffering to be minimal, and pray for each other to continue to be

strong.

 

Marianne sends her love to each of you!

 

Love,

The McLellands, Hudsons, and Fullers

 

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1/22/04

 

From Laura:

 

We are still waiting for many test results.  Marianne seems better today because she got some sleep last night, she has eaten, she is complaining less about pain, has become more verbal and clear headed, and wants to get out of the bed!   That isn't really possible right now, but maybe she can take a ride in the wheelchair for a few minutes tomorrow. 

 

They detected some blood in her spinal fluid but cannot pinpoint the source.  It could be any of the possibilities (leukemia, lymphoma, or infection) or could be from trauma at the sight where the sample was drawn.  No one can tell for sure at this time. She has a pretty high fever and her blood pressure can get high at times.  We are hoping for infection because that is much more treatable with a greater chance of success. 

 

Unfortunately, it will most likely be Monday or Tuesday before the molecular test results will be back.  Those results should tell us for sure if the cancer cells are back.  Until then, we will continue to be here for her and for each other.  Her doctor used the term roller coaster ride and it seems fitting at this point.  He encouraged us to pray for her.

 

She will be receiving platelets daily for a while and my husband and Kent have donated so far.  I am going to try to meet the requirements again and donate this weekend. We do not need you to go out and do it at this time, but I will let you know if/when the time comes.

 

When I asked Marianne if she would like to add anything to my email , she said to tell you "I am sorry I can't respond to your emails, thank you for them and for your prayers, and I love you". 

 

We know that hundreds of you would jump on a plane if we gave the 'go ahead'.  It is so difficult to encourage you not to at this point and we greatly appreciate your understanding of our circumstances.  You have been such a source of support for us.  Thank you!

 

The Hudson’s, McLelland’s, and Fuller’s

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1/21/04

Hi folks,

 

Me again. I just spoke to Kent.

I will try to sum up what he told me as best I can. I took notes while we talked but I am sure I won’t get it all in here.

Basically there is a blockage in her spinal fluid. They are doing tests and it will take a few days for the results to get back but it could be 1 of 3 possible things:

1.       Bacterial. If this is the case then it is the miracle they have been hoping for because it can be treated

2.       A form of cancer known as post-transplant lymphoma

3.       The ALL is back

 

Let’s all hope it is bacterial which can be treated. If it is either of the other 2 then we are looking at slim chances here.

Marianne is conscious but she is highly medicated. One minute she is lucid and can talk and is aware, next minute she is talking out of her head and not making sense, hallucinating, etc. Those are side effects of the strong medication she is on.

Kent said the shingles are getting better and the Graft vs. Host disease is also getting better, in that they aren’t as bad as they were. That is good new as I know the shingles are a great source of pain for her. He also said she is still in a good bit of pain. She doesn’t really want anyone around and won’t really talk with anyone. He said she is the sickest he has ever seen anyone and that her spirits are very low and she is very tired.

She has a fever, which could be due to the fact that they took her off the steroids and it is a reaction to that, but they just don’t know. That is the worst, not knowing anything right now. Knowing they have to wait a few days to get the tests back to find out either way and to be on edge like that for that long with the unknown.

 

The doctors are baffled because she is showing the most rare of rare complications with this form of leukemia. Kent said she is in the 1 percentile and the best doctor’s in the world are working on this and they can’t put their finger on it.

 

Another big concern is that she is losing the will to fight the disease. From what I understand the mental and physical fighting of illness is an important part of the healing process and she is so tired and so wracked with pain that she is starting to give up. I hate to hear that and we all hope that in a few days the doctors will walk in and say, “Guess what? We can treat it!” and she can start fighting again.

 

I have talked with a few folks who want to fly out and be with her and her family. I asked Kent about that and he said it really wouldn’t be a good time right now. He said Marianne wants everyone to remember her healthy and that she doesn’t really want anyone around at the moment. The entire McLelland nuclear family is there and I get the impression that while they are counting on everyone’s love and support and appreciate every bit of it to the fullest, they, and Marianne need some private time right now.

 

I don’t about you all but Merritt and I have said lately that we can’t concentrate on our work for thinking about Marianne and the McLelland family. The McLelland’s are very special to Merritt and I and I know to all of you too.

Lately it seems busy work and the everyday meaningless things that creep in to our lives all seem so ridiculous in the grand scheme of things.

Like someone said today, Marianne is too sweet of a person to have all of this happening to her.

Just remember to appreciate each moment and each person. Don’t waste it.

 

I, or someone will send more news as we get it.

 

Take Care!

Lisa and Merritt 

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1/21/04

 

Laura asked that I send out this update on her behalf:

 

I don't really know what to say this morning.  Marianne had a really rough night, rough past few days. She has a fever and is very uncomfortable and in pain.   We are waiting for test results to come back.  She has some type of infection and it seems that she may have cancer cells again in her spinal fluid.  It will take a few more days for the cells to develop from the sample they took to confirm or eliminate the possibility.  I am not a scientist so I may get some of this wrong.  Basically, there are a lot of things going on in her body and they are working hard to determine exactly what it is. 

 

I have been honest with you all along.  It doesn't look good. We haven't been given much hope or possibiliites for improvement so far.  Our whole family is here with Marianne and we are using your love and strength to help support us.  I know that the fundraiser was a huge success and that it has meant so much to us to see the goodness that has come out of this experience.  Marianne is touching so many lives and making such a difference.

 

I don't even know what to ask you to pray for.  Strength for Marianne, for us, and for each of you; and a miracle! 

 

God bless you and your families and thank you for being here for us! 

Laura

 

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1/19/2004

 

Laura cannot access her full address book from the computer she is using in Texas and asked that I send this out to you

 

Lisa 

 

Mom and I are awaiting the arrival of the rest of the family from the airport.  Marianne is comfortable right now and has been resting peacefully for several hours.  I guess we will regroup in the morning and speak with her doctor about the next step.  Please know that we feel your love and support and are leaning on you for strength tonight.  Thank you for making the fundraiser such an incredible event.  Thank you for your prayers!  I will update you as soon as I know something else.

Love,

Laura

 

Mom is here with me and sends her love to each of you! 

 

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1/19/2004

 

Heavy news folks. As some of you who were at the fundraiser last night know Laura is in Texas because of complications Marianne has been experiencing. She left yesterday. Kent just called us here at home. He, and everyone else in the family who are still here in GA are on their way home to pack and go to Texas today. The doctor called and wants everyone out in Texas ASAP. They did a spinal tap on Marianne yesterday and found something in her blood that wasn’t good. At the time they weren’t sure if it was yet another infection or a re-appearance of the leukemia. They now know it is the leukemia, but a different form. I am not sure exactly what it is called and Kent wasn’t sure either. The doctor doesn’t want to give up but knows she is weak. He said there is an outside chance they can treat it. The family has been called out to make a decision as to what to do. Whether to bring her home or try to treat it. Right now Marianne is not conscious. I will keep everyone updated as I get more news and info. Kent said he would try to call later and let us know more. He asked that I call and e-mail everyone who I think needs to know and to keep praying and sending good thoughts to her and the family. As always, I will keep the web site updated as more news comes in.

 

Thanks,

 

Lisa and Merritt

 

 

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1/9/2004

 

Marianne's status is still the same. They are slowly decreasing the steroids and will be watching for signs of infection. Thank you for all of the emails!  Lee is reading them to her and it is a huge source of encouragement for her!  Bless you all!

 

I hope to see many of you at the fundraiser next weekend. I think they could still use some help and sponsors and auction items. You can buy tickets ahead of time if you want.  The website is Fundraiser for Marianne McLelland Hudson.  Thank you for your prayers and keep passing it on!

 

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1/7/2004

 

Marianne will most likely be in the hospital for a while. The main problems are Shingles and Graft Vs. Host.  The treatments for each cause problems with the other. They tried a new medication yesterday and it will take a few doses to see any results. The medication is given once a week.  She will also begin another treatment called photpheresis the end of this week. If I understand correctly, they will remove her blood and radiate it to suppress the Graft vs. Host. The possible side effects of these new treatments are infection and bone marrow suppression, and suppression to her immunne system, which is already very weak.  She is in a great deal of pain and discomfort and is struggling with her spirit and courage to continue fighting.  She is weak and sad and scared!  I am not sure what the prognosis is at this point.

I am asking each of you to email her at the hospital. She is not checking her email or taking any phone calls at this time. I don't even know if she will be able to read the emails, but someone can read them to her or she can just look at the stack of paper and know that so many people are here to give her strength and support when she is feeling like she can't bare it anymore.  So please take a minute over the next few days and reach out to her.  She needs us so much right now!  The website is M. D. Anderson Cancer Center   and her patient number is 543618.  

I came home last night a Kent and Lee and Mom are with Marianne in Texas. My dad is going this weekend.  I will let you know what I know. Thank you so much1
Love,
Laura

 

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1/5/2004

 

 

Posted on behalf of Cindy (Gillespie) Ivey

 

I've been asked by several people this morning for an update so here it is:

Douglas talked to Kent just a little while ago and he was on his way back to the hospital. They were able to make Marianne a "little" more comfortable last night with several types of pain medication. Today, after Lee signed some consent forms, they are going to try some "experimental" drugs on her. First, they are going to have to do a bone marrow biopsy. It is my understanding that her immediate family, except her Dad (he has the flu), is at the hospital.

Douglas is talking to Kent and then I am talking to Douglas so we will keep you posted. If you do NOT wish to receive these updates, PLEASE let me know. I'm new at this and don't want to get on anyone's nerves!!

Take care,
Cindy

 

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1/3/2004

 

Marianne was admitted back into the hospital on Wednesday evening.  She has

had a fever and severe pain.  They determined that the Graft vs. Host disease

was getting worse and wanted to treat her for infection quickly and put her on

a strong dose of steroids to treat the Graft vs. Host. She still has the

shingles as well. 

 

She is in a lot of pain and is very sad to be back in the hospital.  Lee and

I came out to Houston on Friday and will stay for a few days.  She seems to be

stabilizing on the new meds and her fever has broken today.  Please continue

to pray for her and her speedy recovery from these complications.  I will let

you know as soon as I learn more. 

 

Laura

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12/30/2003

Marianne sounded much better today! It was the first time in a long time that she wasn't crying from the pain when I called.  She has been through so much!  I am planning on going to Houston for the weekend and I can't wait!  I am going to really have to restrain myself from smothering her with a big hug!  I think that when the day comes that she is able to receive one, I will never let her go! 

 

She hasn't felt like checking her emails lately but I am keeping her updated on your continued prayers and support.  I am hoping that I can read some of them to her while I am out there and maybe clear out her in box.  I am sure it is loaded with messages!

 

As always, I will take your love and well wishes with me and share them with her and my mom.  Also, for those of you who are asking, they are using Eckerd’s for prescriptions and medical supplies if you are interested in sending gift cards.  The address is:

 

7500 Brompton

Apt. 559

Houston, TX 77025

 

Also, they send thanks for all of the phone cards and other gift cards!  Mom uses them as soon as they arrive! 

 

I know that the new year is going to bring my sister home safe and sound.  I wish that all of you have a Happy New Year as well!

Love,

Laura

 

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12/24/2003

Marianne continues to be strong despite her pain and suffering. She was given a good report by her doctor this past weekend. There is still no sign of Leukemia cells or the Philadelphia Chromosome and her counts are improving!  She still has the Graft vs. Host but a little is good, although I am sure she would argue that point.  He said he would work towards the goal of getting her back home around the end of January! She would then continue her treatment at Emory. Please pray for that dream to come true!

 

Lee and Sydney are with her and Mom this week for Christmas. We will plan to go as soon as the Fuller family germs are gone.  I miss them so much!  Marianne was very sad last night and in a great deal of pain. She said that they took a biopsy of the "sores" on her back to see exactly what it is, it may not be related to shingles or Graft vs. Host. I didn't get too much info from her because she wasn't able to talk due to the pain. It breaks my heart to hear her cry. I want to hold her and hug her but couldn't do that even if I was with her. I had a disturbing dream last night that she was able to come home but she wouldn't let anyone touch her.  She was so used to the pain that even though it was gone, she couldn't bear to be held or touched anymore for fear that it would hurt. I was crying when I woke up this morning.  It has been so long since I have had my arms around her, so long since anyone has.

 

I told her last night how strong she is and she said that she felt like she was losing it.  I reminded her that she is fighting with those tears and cries of pain.  I told her that when she feels like she is losing it, remember that we are all here to hold her up, that we are not going to let her fall.  That we have created the warmest, safest embrace for her to lean back on.  And I meant every word of it. I know that you are all here to help her and someday she will come home and be able to feel this huge embrace that we have for her. 

 

I don't know how people who are sick can survive alone. I can't imagine this past year without all of you here with us.  Even though it is communicated through cyberspace and mail for the most part, it is felt in our hearts and minds and spirits.  I hope that you all have a wonderful Christmas and are able to celebrate and rejoice with your families. I will be with mine in spirit and heart and will thank God for you and the love you have shared with us.  God bless you and Merry Christmas!

Love,

Laura

 

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12/18/03

 

Marianne is improving slowly but surely. She is still fighting the shingles and is suffering from some pretty serious pain. She is working hard to build up her strength and muscles and is determined to come home soon!  She still has the Graft vs. Host disease and is being treated for that as well. She is having the plasma exchange periodically to help out with platelets.

 

The entire Fuller family has been out of work/school this whole week with the flu. It has been horrible.  Of course, we had to cancel our plans to go to Texas for the weekend and have been very upset about it. My dad is still going to try to fly out there sometime this weekend, although the flights are overbooked again. I think some of Kent's children have been getting sick as well.  It is going to be a bittersweet Christmas for all of us. We are so thankful and blessed to have Marianne in Texas and to be at the post-transplant stage, but we are so sad that we cannot be together during the holidays.  I know that what is important is that she is fighting and surviving but I am still selfish enough to be angry about the circumstances.  I miss my family and want them to come home. I want Marianne to stop hurting.

 

Mom and Marianne could probably use some extra HO HO HO's since we can't bring the grandchildren out there. Lee and Sydney should be able to go out next week for Christmas so I know they will enjoy their time together.

 

I'll update again soon!  Take care and beware of the flu-it is really ugly!

Laura

 

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12/14/03

 

Marianne continues to do well as an outpatient!  She is having a difficult time with the shingles and is in a lot of pain.  She is very weak and is now going to physical therapy to help her rebuild her muscles. She has fallen a few times and scared Mom to death!  I know it is frustrating to her to be out of the hospital and still feel so crappy.  She goes to the clinic daily and they assess her needs.  She may get blood or platelets, potassium, whatever she needs. Lee is out there with her this weekend and we are planning to leave Thursday and Friday for our Christmas weekend together. My daughter has caught the flu over the weekend and I don't know if we(she) will be able to go. She is very excited to go to Texas and will be quite disappointed.  We are all looking forward to being together. 

 

I hope you have had the opportunity to view the fundraiser website I sent.  They are really working to make them very special events. Make sure you go to the guestbook and leave a message for Marianne.  I know she is going to enjoy reading them!  Fundraiser for Marianne McLelland Hudson 

 

Here we are, almost one year later, and you continue to amaze me.  No one has forgotten us, no one has walked away, in fact, the love and support continues to grow exponentially!  You can't imagine how much it means to us to have this energy surrounding us.  I know I can speak for my entire family when I say that we feel this embrace around us and we have security knowing that no one is dropping their arms and leaving.  As I have said before, Marianne has a lot of old friends to see again, and even more new friends to meet. 

Laura

 

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12/08/2003

 

Marianne was released from the hospital today! We are all very excited and very nervous but we know that things are going to be better because she is stronger this time and even more ready to go home.  She will stay at the apartment in Houston at night and go to the hospital clinic for outpatient monitoring and treatment.  I do not know at this time what her schedule will be this week. 

 

Mom got to come home for a few days and then arrived back in Houston to bring her 'home'.  My father has been there since Sunday and some family friends visited with her over the weekend.  She has been up moving around and improving her strength in preparation for her release.

 

We are looking forward to going out there for Christmas and hope to bring her home soon!  Thanks again for your love and prayers!

Laura

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12/02/2003

 

I got in from Texas late last night.  I was stranded because of the holiday.  Marianne was able to visit with Lee and Sydney all week and she seems to be doing okay. She received the results from the last bone marrow extraction/evaluation last night and the results indicated that all of her cells are now from the donor!  That means that the transplant has worked and hopefully all of the bad stuff is gone! (please excuse my less than technical explanation, I usually just try to get the bottom line because the rest is too confusing!)  She is still struggling with the Shingles and is in a lot of pain but they may release her sometime next week to try outpatient treatment. We are all very excited and very nervous at the same time! 

Marianne's birthday is tomorrow!  I will send her email and address again for anyone who wants to wish her a happy birthday. She may not check her email so you might have a better chance at emailing her through the hospital website because they will print it and take it up to her.  Remember, she can't have any fruit baskets, cookies, other food or fresh flowers!

Email-   lmhk9@aol.com
Address: 

7500 Brompton Apt. 559
Houston, TX  77025

Click here: M. D. Anderson Cancer Center
Marianne’s patient number:
543618


Thanks for everything!

                                                                                                                       

Laura

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11/23/03

Marianne has learned over the weekend that she has developed Shingles.  It is a very, very painful viral "infection" that is in the same family as cold sores, Herpes, and the chicken pox.  She has lesions or blisters on her torso, arms, and shoulders and is in terrible pain and discomfort.  She is taking extra pain relievers and is pretty much confined to the bed again.  From what I understand, it causes no risk to the transplant but it is setting her back a few days, or possibly longer. She is not able to get up and move around and develop her muscles again like she was doing the past few days. She will need to recover from this and then start back with walking around and regaining her strength. 

 

Her doctor has said that she is not contagious and that Lee and Sydney can still come for Thanksgiving.  I am most likely going to go next weekend for a few days. My mother is very tired and emotionally drained and may even come home for a few days.  She has been incredible out there!

 

Two new fundraisers are in the works and are going to be incredible!  Some of our wonderful Fayette County High friends are putting together some amazing events and I will pass on the info as soon as I get the okay. I know a lot of you will not only want to attend but also participate so I will make sure you get connected with the right people.  What a blessing you all continue to be to us!

 

If you ever ask "why Marianne", reflect back on this year and my emails and all of the wonderful things that have come from this experience.  It becomes crystal clear.

 

Our love to each of you and yours,

Laura

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11/21/03

Marianne is doing much much better!  Her white blood cell count is rising and she is finally hanging on to some of her platelets! She has been walking around the floor at the hospital and the best news of all:  she got up by herself and went down to the gift shop and went shopping!!!!!!!!  She enjoyed it so much that she went back again later the same day.  She said she told mom that she had to get out of that room!

We are planning our family trip to Texas for Christmas and we are all so excited to get to spend some time together.  My children have really missed Aunt Marianne and Grandma Jim (or Gim, as my two year old son Evan calls her)!  Lee and Sydney plan to spend a few days with them for Thanksgiving and my father is going for the day. 

There are a few new fundraisers in the works and I will pass on that info as soon as I can.  You have all been so amazing, words can never describe what you have meant to us. You are all like guardian angels watching out for us as we continue this journey to bring Marianne back home, healthy and ready to go on with her life.  What a celebration we will have!  Marianne has no idea how many friends she has that she has yet to meet. 

I'll try to update again in a few days.  Thank you so much!
Love,
Laura

 

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11/12/03

 

Marianne is getting better!  She has been up moving around the floor and is making progress with the medication changes. She is still suffering and battling the Graft vs. Host disease but so far it is contained to her skin and no signs of it moving to her internal organs.  Hooray!  She did not get to leave the hospital or visit with Sydney since my last email but the doctor said that next week he would evaluate future plans for possible discharge from the hospital.  My dad was able to fly out today to visit with her and he was encouraged with her progress. Her husband, Lee, has been sick and has not been able to go out there again.

 

I can't thank you enough for your emails. I wish I could respond to each of them but today I had 147!  Please know that I read them all and at I at least respond in my head.  I think Marianne is getting online some days. Her email address is lmhk9@aol.com for those of you who have just joined us. I was able to get clearance from AOL to continue sending out these emails. They told me the last one went to 1023 people after everyone forwarded it on. Can you believe that?  I am astounded!

 

We are making arrangements to all fly out to Texas for Christmas.  Please pray that we can all be together, to be able to get flights and time off from work to be together as a family.  It would mean so much to all of us.

 

You are all making such a difference in our lives! 

Laura

 

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11/05/03

 

I have a great update on Marianne and pictures and lots of emotions to get out today!  So for those of you who have shared that I make you cry, you are duly warned!

 

Marianne is doing MUCH better than a few days ago.  She has been able to get out of the bed and has even made a few laps around the hall!  Huge improvement!  She even sounds more like herself and has been getting online to check emails again.  She feels so isolated from everyone and being able to reach out and talk to you is some of the best medicine she can ever receive.  She may even get to leave the hospital for a few hours and visit with Lee and Sydney at the apartment this weekend. 

 

Her strength is amazing. She has been through so much that we can even begin to imagine.  Seeing her suffer is unbearable. I sat with her last weekend and she hardly spoke to me.  She was so uncomfortable and in pain and suffering with the rash that covers her body. She is literally bruised from head to toe. Her body is full of fluid and steroids and she doesn't even look like herself anymore. (She most likely will not appreciate me sharing this, TMI, I know, sorry Marianne) But I need to get it out.  I wish I could quit my job and hire a nanny and never leave her side until we bring her home.  It is so difficult to say goodbye.  I feel guilty that she thinks we are all going on with our lives and living without her while she is there. I don't know how to express to her that she occupies every breath I take.  Even making simple decisions are difficult because it all seems so trivial. 

 

I read an email my brother sent to her recently.  He told her that he wished he could be like the big guy from the movie The Green Mile and that he could suck all of this out of her and take it into him. I couldn't even finish reading it.  We are so fortunate and blessed to have each other.  My family will never be the same, in so many positive ways.  I stared at Marianne while she was trying to sleep and tried to define our relationship.  I realized that of all the people in the world, I feel the closest to Marianne, for many different reasons.  Now don't get me wrong, we have our differences and arguments. But we can finish each others sentences and know how the other will respond to our thoughts.  We shared a room until I was in the fifth grade and then spent the majority of our time hanging out together with the same friends and activities.  Even though I sometimes talk to her three or four times a day, it is not the same.  There have been so many times I have picked up the phone to gossip or share something unimportant, like that I saw legwarmers in the stores, and I stopped myself because she is not able to be interested. 

 

I want my sister to come home and enjoy her life again like she should. I want her to be here for holidays and nothing days.  I felt guilty for being able to take Sydney out for Halloween.  She has suffered enough for ten long months and I am angry about it!  I try not to be but I can't help it. I want to take it away, like Kent; I want to take it over for now on, just let me take it from here!  And I am angry because I can't.  I am working on the anger, but am not sure where to put it.  ( for all of the new people or people who don't know me, this is my outlet and my psychiatric couch).  Although my intentions are to serve as a link to Marianne, I often have to let some of it go.  You have all been so supportive and gracious in allowing me to do so. Thank you for being there for me.

 

Again, I thank you on behalf of my sister and our families for being a constant source of support and prayer. I have needed you almost as much as she does.

Laura

                                                           

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10/28/03

 

I don't even know how or where to begin.  Marianne is not doing very well.  I'll try to get the info and times right but don't hold me to it.

Marianne was admitted back into the hospital October 18.  We went to Alabama for our grandmother's funeral on Sunday and then my father and I flew out the next Monday to visit for the day.  I decided to spend the night and my dad came back home. Things went down hill from there. Throughout the rest of the week, my family members all flew to Texas, including Marianne and Lee's daughter, Sydney. 

Marianne has developed a disorder/disease called Thrombocytopenic Purpura (TPP).  I may have gotten that right.  Anyway, the way I understand it is that her platelets are getting the wrong message and are clotting throughout her blood vessels.  Her cells are becoming damaged as they pass through the clots and she is passing them.  She has been undergoing a procedure called a Plasma Exchange daily. Her blood is removed and her plasma is separated and then her blood is returned with new plasma that has been donated. She is also receiving platelets regularly and everyone in the family that was able, donated for her. 

She is currently in the ICU and is having several complications including very high blood pressure, low platelets, sometimes a slight fever, swelling, and on and on.  She had a seizure early on Wednesday morning and they were able to detect some brain swelling. As of today, they think that the swelling is gone.  She has drug-induced diabetes and her insulin and glucose levels fluctuate.  They have had to stop the medication for the Graft vs. Host disease because it may have caused an allergic reaction. 

We don't know when she will leave ICU.  We all came home Sunday evening, except for Mom and Lee.  Marianne got to see Sydney three brief times because we were able to get special permission from her doctor.  Three of Marianne's friends also came out on Saturday and were able to visit with her.  Having all of us together really lifted her spirits, especially spending time with her daughter!

I am sure I left out a lot and got some of it wrong. All I know is that she is not doing very well, and the main concern is her kidneys failing. The transplant seems to be doing fine, it is all this other stuff that is the problem.  I will keep you updated as I learn new things.  I am planning to go back this weekend after Halloween. I promised Marianne I would make sure Sydney gets to trick or treat in my neighborhood with my son Evan.  Then I am out of here. 

Please continue to pray for her, as I know you are.  I am so scared and hate being away from her.  She needs all of us so much right now. I think you can go to the MD Anderson Website and somehow send her an email. I haven't had time to check it out. When I get home tonight, I will try to send out a link.

Thanks for reaching out to us!

 

Laura

 

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