Pneumonia

I got a call from my sister this morning, Lans was taken to Del Webb hospital last night. She has pneumonia and her feeding tube is either leaking or has caused an infection - causing her belly to distend again. She was having trouble breathing and was in ER this morning, but I believe they have that stabilized and she has been moved to ICU. "She is as sick as you can get" according to her mama.

A lot of the immediate family is at the hospital trying to figure out how they can get hospice to work at home with two little boys that are very under the weather and not sleeping through the night.

Your continued prayers are appreciated on behalf of our girl and all who love and need her.

Laughter is the best medicine. . .

I love that our girl with all her current physical limitations continues to keep us laughing.

First let me clarify (because there have been some questions) that the splatters on the wall and ceiling were the pureed food Ben prepared for her. They inject the food into her feeding tube - the splatters were feeding syringe attempts gone awry. . .

I got this picture sent to me via cell phone with the caption "Oh no it's feeding time again!"

Love her humor, love that through it all she keeps us smiling. . . using her white board as an umbrella from falling food rain :). I love her. .

Paying it forward. .. from the mama

Written by Pam on her caringbridge website.

PAYING IT FORWARD!

Since last week Ilana has been working hard at getting settled at Hospice. I can tell you it has been a difficult transition for all of us, especially since Ilana is far from "throwing in the towel" at this point in time!
Last week her co-workers from Banner Thunderbird "3A Tele" organized a car wash to help raise money for Ilana, Ben and the boys! And that they did! Their hard work raised over $2,000! They are the most amazing group I have ever seen! The next fund raiser is planned for November 19th and 20th which will be a rummage sale at Melanie's house in Surprise. Stay tuned for the details in the next few weeks!
There as been a constant flow of friends, family and co-workers coming by Ilana's room at Hospice to help out in anyway they can. Even if it is just to give us a break for a few hours to catch up on errands. Yesterday was the first day Ilana's pain was somewhat controlled. She had visitors all day and she was totally thrilled! By the end of the day she said she was exhausted but in a good way! She has always been a people person......as long as there are people around, she's happy! Our friend Tom has been preparing meals every week sending them over on Wednesdays for all of us to enjoy. We have not had much time for cooking over these past several months and we so look forward to Tom's delicious home cooked meals! He has McDonald's and Wendy's beat hands down!
Since Ilana's cancer returned in August, Ben has spent many sleepless nights researching natural remedies to fight cancer. He was able to find a local naturopath who was willing to take Ilana on as a patient. They have actively been working together in treating Ilana's cancer and building her body up again. We are seeing improvements everyday. Even small improvements are so encouraging! Hopefully we are on the right track. Our next step is to work on getting her outside for some fresh air! Physical and speech therapy are also on the agenda!
This week both Matthew and Andrew have had colds so she hasn't been able to see them. Hopefully by the weekend they will be on the mend and creating chaos once again when they come over to play with "mommy".
Ben's newlywed sister "Ravishing Rachel" and brother in law "Brilliant Bryan" will be returning to their San Diego home soon. They will certainly be missed as they have done a lot of the "to do" projects at Ben and Ilana's house and made it look absolutely "stunning"! I can't wait to see Ilana's face when she finally comes home.....she will think she's in the wrong house!
Once again I know I can speak for all of us as we feel so fortunate and blessed to have such wonderful people in our lives. Thank you for your prayers and well wishes!

Ravishing Rach and Brilliant Bryan loving on Andrew and Matthew.

Donation account

I have a had a few inquiries about a foundation account for Ilana. There is not a foundation set up for her, but this donation account has been set up. Deposits can be mailed into the address below (be sure to write her name, Ilana Smith, and account number as well). Deposits can also done in person at a branch - you can view their website http://www.bannerfcu.org/contact.htm for more details on locations.

Banner Credit Union

Phone 602-254-5291

Account number: 51845

Deposit Mailing Address

5757 W. Thunderbird Road, Suite W-107

Glendale, AZ 85306

My understanding is that Lan's amazing RN buddies are doing yet another fundraiser - a garage sale the weekend of November 19th . . more details to follow. Buddies in charge please email the exact info when you have it (where, when, times, if you need donations, etc).

Many thanks to all who have generously contributed their time and means in helping Ilana. The majority of the naturapathic medicine is not covered by insurance so your help has been such a remarkable blessing.

I was able to visit Lans again today. Shortly after waking up she pointed the ceiling and shook her head. Seems there was a little accident with her "good" food. Of course there was the usual diahhrea/bodily fluid jokes to follow (because I am juvenille and will do anything to make her smile inside). . .

But I laughed even harder when this picture was sent to my phone from Pam with the caption "OH NO!!! Not again!" View splattering on the wall behind Lans. Tooo funny. I feel bad for the next patient - I am certain they will pray for transfer to another Hospice that looks less painful :)

My sis-in-laws Jamie and Lans. My bros have the BEST taste in women / friends for me.

Melanie was also there. She worked with Lans. I met her at the car wash and was happy to spend a little more time with her today. She is so helpful and seems very willing and capable to stay with Lans and help during the day - Nice that our little RN has some wonderful RN buddies!

And at last, she misses her expression. . . so I helped her smile, like she has helped me ever since I met her. :)

We're gonna Love Through It

I heard this for the first time driving home. . . needless to say it was a teary ride home. We're going to love you through this Lans!!!

Now that Lans is closer to home and kids are allowed, she will be seeing a lot more of my buns. I visited her Monday. She seems to be doing pretty well, stable at least and pain tolerable. She is completely with us and her personality still fills up the room even with her inability to talk. My father-in-law had a trach and he was able to talk and I asked Ben about it, he said that the chemo or lymphoma had damaged her nerves to her vocal cords so the hope is that the damage is only temporary (also why her face has Bells Palsy type symptoms).
I am not the only one enjoying more frequent visits - her old coworkers Debra (above) and Emily (below) stopped by and we luckily were there to snap pics.

Time for lunch. Ben has been pureeing all sorts of good stuff for Lans to put in her feeding tube- veggies, nuts, etc. I told her I would eat that "good" crap too if it didn't have to pass by my taste buds. She didn't pass her last swallow test (same neurological issues as with her vocal cords) when she was at Mayo so I don't think they are risking her trying to eat orally.


It amazes me as I look at Lans how hard she continues to fight to get better. Pam said she does not like the idea that she is in a "Hospice," she wants to be home. She is in it to win it. . .and when I look at this little monkey and toad I like to think I would do the exact same thing. When I grow up, I want to be like Ilana.. . .

Car Wash: Feeling the Love

I had the privilege of spending a few hours at the fund raiser for a Ilana today. We were amazed by the love and sacrifice of so many who have been touched by Lans. The cars just kept on coming and they just kept on washing. . . from 9-3 in the very hot AZ sun.

It's amazing the emotions that accompany cancer. I felt them all today. . . extreme love for strangers who care for Ilana, overwhelming gratitude, sadness over signs that read, "young mom cancer car wash," determination as I held my "cancer sucks" sign like a sword with tears brewing . . . and always wondering WHY when I look at her boys?

A huge thanks to the many, many loved ones who came today to help Ilana, my brother and her little boys. Her loved ones have felt so helpless in her fight. . .but there is no question the funds raised and loved shared will HELP in her treatment.

I apologize I don't remember the names of all of Ilana's coworkers and friends. And I am sorry I didn't get pictures of everyone who helped today.

Fund Raiser

Some of Ilana's amazing co-workers are doing a car wash to raise money for Ilana's cancer treatment. Her coworkers have been so generous and kind and have raised money for her through selling lymphoma bracelets as well.

If you have a chance to come by to support Lans this morning:

Car Wash Fundraiser for Ilana Smith and Family

Saturday at 9:00am

Pizza Hut-59th ave and Bell Rd. , Glendale, Arizona

The support from fellow nursers and doctors has been overwhelming. She has posters all over her room from those who love her. One of the doctors she worked visited her a few days and it made her feel so great. She is buoyed up by people.

Our girl arrived safely to Hospice of the Valley last night. We are excited to have her closer to home. She had lots of visitors tonight as husbands and kids could come along too.

To be completely honest, I haven't seen Ilana look this great in a long time. Since my sister and her husband came to town to help with the boys, shortly after the Mayo doctors said Hospice, my brother has been researching, ordering and arranging the administration of naturapathic medicine for Lans. And maybe it's to early to say, but she seems like she is doing better. Her pain has been little to none. Oxygen levels were high. She was animated and full of life tonight. She was tickling Andrew, stroking Matthews hair, writing messages, giving hugs. .. a marked difference from even a week ago sincerely. It may be because her little boys were with her, but she looked so great.

Ben holding Matthew and my son Aaron trying to steal Ilana's white board from him.

Tickle, tickle!

Lans with her boys - tickling baby Andrew and enjoying Matthew.

My sister (Ben's sister) Rachel and Lans

My husband Ryan usually watches kids so I can go. Yeah for hospice and children allowed.

Ilana with her in-laws who love her like their own.

Rach has been working hard to make this board for Lans to remind her why she continues fight. She did such a beautiful job for our girl.

Next Step, Hospice??

Posted by Pam (the inspiring mama) on Ilana's caringbridge website.

As some of you may know, we had a long chat with Ilana's hematologist, Dr. Reeder, last week. We know the physicians and their teams have been working tirelessly on trying to find an effective treatment for Ilana. Unfortunately the treatments they have tried so far have not worked. The physicians and their teams believe the lymphoma is still active and along with the side effects from the chemotherapy together this has caused a lot of neurological issues. Dr. Reeder recommended Hospice to us. Admittedly we were all taken back by this surprising recommendation. Even though this alternative may of crossed our minds from time to time, we thought it was still down the road. After much discussion, Ben, Arnie I decided this is a viable option at this time. Ilana's body needs a rest from the chemo, at the same time it would give Ilana some normalcy in her life again as it has been almost 3 months that she has been in the hospital. Ben would also have a chance to pursue some naturopathic treatments he has been researching. One of our cousins is a naturopath in New York. She has graciously given us her time, recommendations and guidance. Please don't take this decision to pursue Hospice in a way that we are giving up. Neither Ilana, Ben or the rest of the family are looking at this next step that way.
I will say that without a doubt, the last 10 months have been extremely tough. The only good thing is that when one of us feels down, the rest of the family is there to lift your spirits again and keep on going.

For now, we are working hard to stay positive and keep our day to day life in tact. We appreciate more that you know all the prayers and support we get from all of you.

Our girl continues to blow us away. Today she had a surgery to put in a feeding tube directly to her belly rather than the feeding tube through her nose, when I talked to Ben he said they gave her a large dose of something that knocked her out. So hopefully when she is bright eyed and busy tailed she will be feeling alright. They upped her pain medication and she isn't quite used to it so she has been a little sleepier.

Assuming all went well with the surgery they will move her to Hospice on Wednesday or Thursday. Ben talked to a naturapathic doctor in Tempe who is going to come to Hospice to give Ilana her first few treatments. This naturapathic center has an outrageous cure right of 93% or somewhere close to it according to my bro. Our girl might be a little sicker than most of the patients, but if anyone can get better it will be her.

My sis and her hubs came in town to help with the boys so Ben and Pam could be with her all the time. Her husband has been busy hanging curtains and light fixtures Ilana had picked out before she went back into the hospital this summer. They have been naughty little angels and snuck the boys in to see Ilana twice. Rachel showed me videos on her phone (which she can't figure how to send to me) of Ilana squeezing Andrew's leg chub and saying (mouthing) "I love you, I love you. . . I love you so much." She loves her boys. Rach said her color looked excellent last night.

Rach has been working on a goal poster for Lans of pictures and quotes to inspire and lift her up as she requested. Rach showed me the goal poster Ilana made forever ago before cancer struck. It included a home, health, love and family. Ilana has never aspired or longed for meaningless "stuff." Her wants and desires are so modest and pure. . they always have been.

Party at Mayo

My parents, little bro Jonny and his wife Jaimee and I went to see Lans last night. She quickly scribbled a request:

No crying, no sympathy talks, no good byes. . .our girl told her mom she is going to exhaust every option available to her, so don't go there.

So while the pics I captured don't show it as well as I wish they did, we had a blast being together with her. We talked and laughed (mostly at my little brothers expense ;)), showed her pics of her boys, told funny stories. . . and I think I snapped pics during the politics portion of our conversation. We had such a great time.

Her cute eyes are still doing there own thing, but she seemed a lot better than last week when I saw her. She was wiggling her feet, she stood for 2 minutes during physical therapy on her own, and while she still had her trach, she is breathing on her own. She was a little frustrated she couldn't smile, but overall her pain was down and she was in great spirits.
Notes from our girl: if you want to do something send an inspirational quote or picture to hang in her room- just one will do so she doesn't get overwhelmed. Our girl still requires order - chemo doesn't cure OCD ;). She kept her white board very clean. :) Love her. Notes are great too, but there is no room for flowers.

She was so happy that Matthew gave her huge hugs when Ben brought the boys in. She was worried he would be scared of the tubes, but I told her that to a two year old boy the machines and tubes make her AWESOME! So thankful he hugged her so tight.

Love this:

And when she sleeps we just like to look at her with wonder. She is just so beautiful and inspirational.
And we like to hold her hand and massage her piggies.. . .

We just love our girl.

Many thanks to the many many people who have written to share their love as well as naturopathic suggestions and support.

Hospice

Tuesday the doctors at Mayo said that the chemo is not working and there is nothing more at Mayo they could do for Ilana. While this news has been devastating to receive, Ben and Ilana refuse to give up. They have met a few people who had been cured through naturapathic medicine when modern medicine has failed them.

They have found a Hospice in Surprise that will allow tube feedings and naturapathic medicine to be administered. They are working hard to find a naturapathic doctor who will come to the location or Ben will find a way to do it himself. My brother refuses to give up on the love of his life . . .the fight continues.

We are praying Mayo will allow her to stay long enough for her stomach to get strong enough and swallowing capabilities hopefully to return.

Ben broke a few rules Tuesday and brought the boys to see Ilana at the hospital. It was the first time she had seen them in about a month. She cried, she was so happy to see them. Your continued prayers, support and love are appreciated during this incredibly difficult time.

Pam called my mom last night (hopefully details aren't lost or warped in this game of telephone), I guess there is no cancer in her spine right now. Very exciting. That doesn't mean it's not other places in her body, but we are still so excited.

I guess four different cancer teams met to discuss just our Ilana for several hours yesterday. We are so thankful for their efforts on behalf of our angel. Pam worked at Mayo for over two decades, many of these doctors have known Ilana since she was little. We are thankful to have them.

Bumpy Road

This is a post most recently written by Pam, Ilana's mom, on her caring bridge website.

We have hit a few bumps in the road since our last journal entry about 10 days ago. Initially Ilana seemed to be doing very well after her last high dose chemo of Methotrixate. The following week she started developing progressive weakness until it hit a point this week when she was actually having trouble breathing. This precipitated a visit to the ICU on Tuesday where they intubated her and on Wednesday took her to surgery for a tracheotomy. Yesterday and today she has been stable. While the physicians and their teams are trying to figure out what is causing the weakness they have agreed to go along with Ilana and Ben's request to hold her chemo this week to see if her symptoms might improve. If this happens, then it's possible the chemo drug may be the culprit of her symptoms.
Needless to say she is fighting hard to keep her spirits up and not to think about what the future of her young family might be like if she was not here to share it. Ben has been a rock for her while he is racking his brain trying to figure out what is the best course of treatment for his wife he totally and completely adores. This is a couple I would truly say are "soul mates".
Hopefully next time we will have better news and in the meantime thank you for your prayers, awesome support everyone has so unselfishly shown.

Visiting Time

Ben has described Lans as his rock and has told me that all day long he could be stressed and sick with worry, but just being with her sets him at peace. Pam told me that when she hasn't been able to see her for a few hours she just feels this indescribable pull to get to her. I have been feeling that same magnetic pull, I needed to see her. . . I ached for a visit.

Ilana had her tracheotomy just a few hours before I showed up. I am sad I didn't have a chance to see her this weekend when we could have talked a bit . . . hopefully soon. But as much as I missed hearing her voice, seeing her little chest move up and down after hearing of her struggle to breathe yesterday brought me such peace.

I came up right after shift change when visitors were once again allowed to come at 8:00pm and I'm so glad I did because she needed a voice. Her stomach was churning because she wasn't able to eat before she went to the ER, she needed her eye patch, she wanted to know who was coming to be with her and she needed help getting comfortable. I tracked down the nurse and he put in the order. He told us that while her stomach aches for food, her body was getting nutrition through her IV.

Her paralysis is shifting. Yesterday her left side was experiencing the paralysis, last night the right side was worse with the left side causing her a little less grief. So it's not Bells Palsy, perhaps something neurological or maybe it's getting better. With her eyes giving her troubles and no voice, our girl would attempt our reading her lips. If that didn't work, she would try her best to write a note. My favorite was during my phone conversation with Pam, "WHEN ARE YOU COMING?!!!!!" - making a point to underline it four times.

The mother- daughter bond they share is beyond special. When Pam arrived she went straight to our girl and stroked her face and hair, "I'm here Ilana, I'm here my baby girl." Lans just grabbed her hand and leaned her head on her mama with a restored peace.

Radiant as ever . . wires, patches, tubes. .. doesn't matter. Sincerely I saw her and she took my breath away. She is just absolutely gorgeous. It's hard to see our former Yoga goddess, with bulging biceps, a puppet to so many machines but her inner strength continues to inspire.

I love holding her hand, an unspoken "I love you."