Day 18

Natalee loves being home!  The weather has been amazing and she has buoyed her spirits.  Her pain is lessening and she may be able to switch to just Tylenol shortly, which is not surprising to those of us who are expecting miracles, but truly a miraculous event so soon after such major surgery.  

She has enjoyed having visitors and really loves being taken for wheelchair rides.  The weather is supposed to be gorgeous this week, so call to see if you can come visit Natalee and take her and the wheelchair out for a spin.  She would love having friends come over to play games too.  The Walton's have some games, but it is always fun to try new ones too.  

I thought I would address some of the questions that Sherri (or myself) get asked about Natalee and where we are going from here.  Kind of Natalee's own FAQ:

Q. Did they get all the tumor out in surgery?

A. The surgeon said that he cleaned it out as thoroughly as he could, however, the cancer can consist of microscopic particles.  Essentially, the doctors do not know if they got it all.

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Q. When we Natalee start her treatment for the remaining cancerous spots?

A. The plan is to let Natalee's body heal from the surgery so that it can be strong enough to withstand the harsh effect of the cancer treating drugs.  They said initially that it could be anywhere from 2-4 weeks after surgery.

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Q. Will she be traveling to Houston to see the doctor who is running the clinical trial as discussed in previous posts?

A. At this point, the oncologist isn't sure that is the best course of action.  The difficulty with sending Natalee to see that particular doctor is that he has never worked with pediatric patients who have RCC.  In fact, that is a huge difficulty at this point.  There are several doctors (even some great ones locally), who have a great deal of experience with RCC, but none of them have experience with the pediatric disease.  The cancer has to be treated much differently in a child than an adult for many reasons.  

The doctors are searching everywhere to try to find a single doctor who has treated a child with RCC and haven't had any luck yet.  There is no data out there due to the rarity of the disease occurring in children.  In fact, Natalee's tumor is the first pediatric RCC tumor that will be tagged for research in the United States.  Kent has read that it is estimated that only 2 children per year are diagnosed with RCC in the entire United States.  

So we are asking people to pray fervently that the doctors will be able to find someone who has treated a pediatric patient with RCC.  

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One last note, as Natalee's condition changes less rapidly, there is simply less to post.  I will post as often as I have information and am still looking for people who have taken pictures from visits or videos that I can post here.  Sherri is also hoping to write something for the blog as well; but obviously, she has a lot going on right now.  She does sincerely want everyone to know how much your prayers have meant for their family, and she is truly grateful for all the help and support. The meals and lawn care and household help has been amazing and a real blessing to them all. Thank you again.

Natalee is home!

Just got word that Natalee is home from the hospital now!

Day 15

Natalee is now off of the epidural for pain relief and they have switched her to OxyContin. Unfortunately, it puts her right out and makes her moody and uncomfortable.  She hasn't been up for visitors since the switch was made, so they are going to do some experimentation today to find a better pain management option for the day and then take the OxyContin at night.  

We are also hopeful that Natalee will get to go home today, and will post as soon as we find out.  

Sherri feels like she is being reminded that even though the surgery was successful and even though we feel like she is going to recover, we can't let up on our fervent prayers. Those prayers will have an impact on how she recovers.  It is easy to slip into a more relaxed mode of feeling that all will be well, but there is still a long road to go.  Specifically, Sherri is asking us to pray that the doctors make the right choices as far as what to do next.  

She asked the oncologist about the next step, and the doctor said that they are just mainly trying to collect as much data as possible to determine what should happen.  Sherri wants the doctors to have open hearts and minds to all the information that is out there so that they can develop the best treatment plan for Natalee.  Thank you for the prayers you have given throughout the day as well as the prayers you've kept in your hearts.  

Sometimes the hardest thing to do is to have the patience the Lord asks us for.  When we have a goal or a recovery point that is on the far horizon, taking the time to map out the best route can be incredibly difficult.  Sometimes inertia feels like movement in the wrong direction. We want so badly to be doing something that gets us closer to our destination and the waiting can subject us to roller coaster feelings of hopefulness and helplessness, anxiety and joy and frustration.   But I know from experience that no matter how much I want everything to run accordingly to my schedule, that I can only to pray and be open to promptings from the Lord and understand that His timetable is the one that we are following.  So while we wait for a plan for Natalee, we can continue our fervent prayers for the doctors to have the insight and information necessary to do what they do best, and know that the faith and patience required is what we can be doing now.

Day 14

I didn't get to the hospital to see Natalee until last night and I'm really impressed with her progress. She really looks great! Members of her basketball team came to visit her last night and her face was lit up and she had her spark back (even though there are similarities, I'm not referring to the All Spark from Transformers which was used to bring mechanical and electronic objects to life).

She was able to move from her bed to her chair and the physical therapist has plans for her to be able to walk from her bed to door and then to be able to walk to the end of the hallway. She can pull herself up and really is healing at a miraculous pace.

They asked the doctor how many stitches he put in Natalee, and he said that he completely lost count. There are stitches in multiple layers and those he said were in the hundreds. The whip stitching to close everything up is over a thousand. Natalee was quite proud of that - she'll be able to win any "who has more stitches" contests.

The best news is that she is expected to be able to go home in a few days! The PT wants to make sure she can walk down the hallway first, but the surgeon said in the next day or two, so we'll see what it happens. Most likely the PT will win and she'll have to do the walking, but with as fast as she is recovering it shouldn't be a problem.

Once again, thank you for all the prayers on Natalee's behalf. We are seeing amazing things happen with her and we know it is all due to the faith that is being exercised from so many people.

Day 12

Yay! Out of ICU and into a regular room last night. The hospital staff is amazed at how quickly Natalee is recovering from such a long surgery. She was able to sit up yesterday (which she had to do before they would let her out of ICU) and she can move her leg quite a bit. She still has some pain of course, and is having a hard time speaking because her throat hurts (due to the intubation during surgery). She does have an epidural and will get to keep it for another week or so (thank you modern medicine).

The plan for today is to have a little physical therapy; they would like to get her walking a bit. If ever there was a time when I needed prayers, it was the first day of physical therapy. It can be very discouraging when your body doesn't work the way it used to, so please give Natalee extra prayers today that she will be able to be patient with herself and her recovery. Sherri says that she is just as independent as ever, hasn't wanted to have the ice chips fed to her unless she could do it herself.

Sherri is concerned about her cell phone minutes, so she is asking that people call directly to the room now if they want to get a hold of her. The number that she gave me is 503.413.1313, and Natalee is in room 3524.

Sherri really feels peace and comfort and is so grateful for all the prayers on Natalee and the family's behalf. Natalee is starting to be able to take a visitor or two a day, and would like to see some of her friends. Please call first and talk to Sherri to see if it is a good day to visit, and please understand that Natalee gets overwhelmed easily so some days just won't work for visiting. She is grateful for all the love that she feels.

Day 11

Natalee spent most of Saturday in recovery mode. As the day wore on she became more alert and was even watching TV when the family arrived to see her. She was in some pain (not surprisingly) and had a slight lung infection, but generally the outlook has been positive.

After the concerns of nerve damage in her leg, the surgeon came in on Friday to check her legs and when he asked her to move her knee she was able to! That is a miracle for they were sure she would have to relearn how to move her leg.

The family is hopeful that Natalee will be able to leave the ICU today and into a regular room. More updates later on...

Day 9

Natalee's surgery finally ended around midnight.  She will be in the intensive care unit most likely until Sunday.  The surgeon came out around 10-10:30 to tell them that everything went really well in the abdominal area.  However, in the pelvic area there was a lot of blood vessel and nerve ending involvement with the tumor, and he didn't think he'd be able to remove the tumor without damaging her leg irreparably.   At midnight he came out to tell them that they didn't have to amputate, which is a huge relief.  Some of the nerves were damaged, so she'll need to have physical therapy to learn how to use the leg again.   He did get out as much of the tumor as possible.  

They are keeping Natalee sedated for most of today to help her body recover.  Sherri is very fatigued as she has been fasting for quite a while and hasn't been able to get much sleep.  She was headed down to get some breakfast after we spoke, and she is hoping to get some rest today. Obviously, Natalee isn't ready for any visitors the rest of this week, and then they will evaluate the situation once she is moved out of the ICU.  

We can't decorate her ICU room, but as soon as she is moved out we'd like to fill the walls with posters and pictures of her friends.  I know that several people have been making videos, if you can email those to me or drop by a DVD I will convert it to iPod format for her to watch.  

Surgery Update

I just spoke with Sherri.  It looks like Natalee has another 2-3 hours left in the surgery.   A fifth year resident (think Bailey on Grey's Anatomy) came out to speak with them just a few minutes ago and told them that the surgery was going beautifully.  The tumor is sticking to itself which has made it easier to remove.  There was a concern that they could cause damage to the internal organs while trying to remove the tumor, and they haven't had any trouble with that at all.  The best news is that there hasn't been any problems with bleeding, so they are very pleased.  The doctor told Sherri this morning that he was planning on taking his time to be as thorough as possible.  

So, I will post another update when I hear one, but it probably won't be for another few hours at best.  Clearly, your faith and prayers and fasts have made a difference.  Thank you so much!

Day 8 - Natalee's Prayer

Sherri asked me to post these scriptures that she is referring to as Natalee's Prayer:

Psalms 55: 1, 4-6 & Psalms 57: 1-3

Give ear to my prayer, O God; and hide not thyself from my supplication.

My heart is sore pained within me: and the terrors of death are fallen upon me.

  Fearfulness and trembling are come upon me, and horror hath overwhelmed me.

  And I said, Oh that I had wings like a dove! for then would I fly away, and be at rest.

Be merciful unto me, O God, be merciful unto me: for my soul trusteth in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.

 I will cry unto God most high; unto God that performeth all things for me.

 He shall send from heaven, and save me from the reproach of him that would swallow me up. Selah. God shall send forth his mercy and his truth.

Specifically today, when praying for Natalee in surgery we do want to ask that your prayers include a blessing that Natalee's main artery that leads into her organs will be shielded from the surgeons knives.  The risk of hemorrhaging is high and we want her to be as protected as possible.  

We know that several large groups of people are fasting today, the missionaries at the MTC (Missionary Training Center) in Provo, the youth of the Summerlake Ward as well as many families, friends and caring people from all over the United States.  Thank you for being there for Natalee & her family when they need you the most.  This type of service is anonymous and the most greatly appreciated since it is truly a sacrifice in behalf of someone else.  Please know how grateful we are, and we know that you will be blessed for the sacrifices that you are making.

As updates are available, I will absolutely post the minute I know anything.  

More Love for Natalee

Actually, this is just of one of so many touching things that I have heard about but it's the first one that I was able to get pictures of.  

Natalee's basketball team had a game today, and they all wore a special sock that their coach made for them.  

Thank you so much to Cassie for sending the link to this, to Coach Darryl for his brilliant idea, and for Natalee's teammates.

I can't figure out how to get the video from Cassie's Picasa Album, but I have a link to it here!

Day 7 - Update

Just spoke with Sherri and it looks like the surgery won't start until 1:30 on Thursday.  Please please pray for Natalee tomorrow.  This surgery will be very tough for her; she will likely be in the ICU for a day or so after the surgery.  More updates as they come.

Day 7

Great news!  The doctor called this morning and they have surgery scheduled for tomorrow (Thursday May 21).  Natalee will be admitted back into the hospital this afternoon around 2 pm to do pre-surgical preparations and diagnostics.  

The surgery is a big one, and is expected to take several hours (4-5).  Sherri didn't remember if they told her the exact time, but I think it will be first thing in the morning (I always had to be at the hospital at 5 am for a 7 am surgery - ick!).

We'd like to ask if those who can would be willing to fast again tomorrow during the surgery.   The procedure tomorrow is a very important step in helping Natalee to beat the cancer, so we'd love to have everyone united in faith and healing prayers and positive images.  We're envisioning the tumor sticking to itself and withdrawing from her healthy tissue so that the doctors have an easy time removing it.  

We are hoping to post more pictures of Natalee, especially recent ones, so if you have some that you could email to me, I'd love to post them here.  What Natalee would really like are pictues of her with her friends, so send me them as attachments as possible.  My email address is joanna.wilbur@gmail.com.

Natalee, I want you to know how much you are in our hearts; we are all praying for you night and day and all the time in between.  Quite literally, nearly everyone that I know is praying for you in one form or another.  I can't say that I know how you are feeling, but I can say that I know how much you are loved, not just by your family and friends and acquaintances and community, but by your Heavenly Father.  We are all priviledged to walk a portion of this journey with you and be part of your support group, and just think of the party that we'll have when you are all better!   You'll do great with the surgery and I can't wait to show you all the fun things we are planning for you during recovery time.  You definitely have a lot of great things to look forward to!

Day 6

--Elder Dallin H. Oaks of the Quorum of the Twelve Apostles, speaking of his mother:
"... she would “call on the Lord with perfect confidence when special blessings were needed.” In her prayers, she would speak to the Lord of her covenants with Him, “almost reminding the Lord that we had paid our tithes and offerings, that the desired blessing was, as nearly as we could judge, a righteous desire, that we were serving in our various callings to the best of our ability, and that now we were laying hold on the Lord’s promises. I can’t communicate the sincerity and the fervor of those pleas. Or the sincerity of the way she lived. … Because my mother had no doubts about the Lord’s reality and his ability to answer her prayers, I haven’t either. … This is a very personal thing to talk about and I don’t very often, because it’s hard to do without sounding overconfident. But I would be scared to death to try and undertake something without asking for the Lord’s help, so I always pray for that help, and I’ve never failed to get it.”

"How often have we prayed something like, "O Lord, be with cousin Billy now in a special way"? Have we stopped to consider what it is we're requesting? Imagine that you are a parent who is preparing to leave your children with a babysitter. Would you dream of saying, "O Betsy, I ask you now that you would be with my children in a special way?" No way. You would say, "Betsy, the kids need to be in bed by 9 pm. They can have one snack before their baths, and please make sure they finish their homework. You can reach us at this number if there's any problem. Any questions before we go?" We are very specific with our requests and instructions for our babysitters. We want them to know specifics. It should be no different with prayer."
--David Jeremiah

Sherri has asked for everyone to be very specific in their prayers right now for Natalee. These are the things that she would like us to pray for:

1. That the tumor will start gelling together so that when the surgeons go in to take it out it can be removed cleanly
2. That the surgeons will be in good health and sound mind during the surgery
3. That the tumor will stop growing
4. That surgery could be scheduled for Friday to get the tumor out as soon as possible

Now that the shock and numbness of the diagnosis are starting to wear off, Sherri says that she is feeling great comfort from the comments on the blog and that Natalee really appreciates this too. She feels like the ability to be able to read and reread the uplifting thoughts and prayers is helping to their burden.

No word yet from the surgeons on a possible date for surgery, but will post it here as soon as we know.

Day 5 - Diagnosis

I’ve started this blog entry several different times, but still haven’t found the right words to ease into this information. The diagnosis is renal cell carcinoma. It is very rare in children. It started in her left kidney and the doctors do not know what causes this cancer in children. Because it is so rare, there is not an established treatment method.

We do know that chemotherapy has not been effective at treating RCC. The plan is to go ahead and remove the diseased kidney and as much of the tumor as possible. In some circumstances, when tumors have been removed, the other metastatic lesions (such as the ones in her lungs) have shrunk on their own, and we are hoping for that scenario.

Additionally, after Natalee has recovered from the surgery, she will begin a treatment of some drugs that have had success in the past at stopping the growth of the cancer. There is a doctor in Houston who is currently running a clinical trial for people with RCC, and Dr. Olson had just consulted with him prior to our meeting. He felt like the drugs that he was using in his trials were available in Portland and that Natalee would do better to undergo the treatment at her home. He was very willing to work with Dr. Olson and assist her in treatment options so that was very encouraging. It is likely that the Walton’s will travel to Houston for a second opinion after the surgery, and if there is an option to join the clinical trial they will consider that.

Dr. Olson was hoping to get the surgery scheduled as soon as possible, so it will likely be the end of this week or beginning of next. It is a big surgery and is complicated to schedule, but they are hoping to bump Natalee ahead of other scheduled patients.

Natalee has felt a great deal of fatigue this weekend and is worn out. To help keep Natalee as healthy as possible in preparation for surgery, Sherri & Kent would like to ask that people wait to visit Natalee until after the surgery. She does read her blog and is grateful for the comments and support and love that she has received.

This is going to be a very difficult battle and recovery and we again request fervent prayers on her behalf. We will continue to post needs as they arise and will keep everyone updated.

If you are interested in sending a card and don't have her address, please send it to me and I'll take it over immediately:

Natalee Walton
% J Wilbur
12185 SW Summer St
Tigard OR 97223

Thank you for your love and support during this difficult time.

Day 4

Thank you so much to everyone who participated in the fast today. I know that the entire Walton family is grateful for the outpouring of love and support.

Tomorrow at 3:30 pm there will be a consult with the doctors. They should have enough of the test results back and are planning on establishing a treatment plan. We plan to update the blog as soon as we have information from that meeting.

I know that Natalee enjoyed her weekend and being home with her family and watching movies. She was able to read the blog and really enjoyed the comments posted. Once we know what the treatment plan is, we'll update the blog on a daily basis as to whether Natalee is up for visitors or not. She definitely misses her friends!

Keep her in your thoughts and prayers tomorrow in the afternoon, and we'll update the blog sometime that evening.

Day 2 - Weekend Furlough Granted

The docs did decide to set Natalee free for the weekend, so after the PET scan (right about now) they will head up to Emanuel to check out and then will go and enjoy the weather. They are excited to have a nice quiet weekend with their family. They continue to express their gratitude for all the love and support, plus Natalee is excited to read the comments posted on her blog. Thank you all very much!

By the way, Janna (who is home from her freshman year of college) is looking for a summer job to help pay for her schooling, so if anyone knows of any openings, please let us know. I'm going to add my two cents and say that she is a delightful, talented young woman who I would offer a job to in a heartbeat - too bad she wasn't here during tax season :-).

Day 2

Good news! Natalee had her heart ultrasound this morning, and they said her heart looks good. There wasn't a great deal of concern about it, but we are happy to celebrate the positives. Still no news yet as to the results of the bone scan and biopsy, but the doctors did say that they are still checking to see if they "got enough" [tissue] from the biopsy and should know that shortly.

Natalee did beat everyone at Rack-O today and it was her first time playing the game! Clearly her competitive spirit hasn't been dulled. I also heard that she is not happy about having her 5th grade picture posted on the blog and really wants her 6th grade picture up instead. I don't have it, so if anyone can email it to be that would be great!

This afternoon they are heading over to Providence Portland for the PET scan and are hoping to take a little "extra time" before heading back to Emanuel. There is hope that she might be allowed a short sabbatical from the hospital on Saturday, but no word for sure yet. Will keep you updated...

Day 1

This isn't the first day of Natalee's illness, but its the first day of the blog, and we decided that the best way to keep everyone updated and keep the phone from ringing off the hook was to make as much information available as possible. Plus, we know how easy it is for information to get confused or distorted.

Last week Natalee started experiencing some severe (but inconsistent) stomach pain. After visiting her primay care physician and undergoing the first of many diagnostic tests, she was found to have a large tumor in her stomach. At that point the doctor referred her to Legacy Emanuel Hospital for further testing and review.

Since she has been admitted, Natalee has undergone multiple biopsies, ultrasounds, CT scans, x-rays and all sorts of blood work. A full body bone scan was completed this afternoon. Tomorrow morning she is scheduled for a heart ultrasound and then she will undergo a PET scan in the afternoon at Providence Portland.

Natalee's team of doctors, led by Dr. Janice Olson, have determined that Natalee does in fact have cancer, however, they do not yet know what type, or what stage the cancer has progressed to.

What we do know is this:

• The tumor is large and has displaced Natalee's left kidney
• They have found "spots" in her kidney & lung
• The tentative treatment plan currently calls for the use of chemotherapy to shrink the tumor and other cancers to make them easier to remove
• The doctors are being very cautious before making any kind of specific diagnosis; it could take up to a week before they have all the data necessary

Natalee is being incredibly brave, but she is frightened and tired of being poked and prodded (and who wouldn't be in the same situation). This is all very overwhelming and difficult for the family to process, especially as they wait for a diagnosis and a treatment plan.

Sherri has asked me to act as an liasion and I will update this blog as soon as I receive new information. She would like me to convey her gratitude for all the support and love and prayers.