The head shave

Pam asked me to upload some photos to Ilana's caring bridge website and I came across this video of Ilana that I treasure. When her hair started falling out she decided to shave it all off. Here is her reaction after seeing herself for the first time.

Chemo

So updates. . . hopefully Pam and Ilana will do another update to caring bridge and correct everything I might be getting wrong. The MRI showed the tumor about the same size as it was- Ben said the imaging they use is a little different so it was a bit like comparing apples to oranges, but they didn't believe it had grown more.

They decided to give her chemo when her urine was alkaline enough (I guess cancer thrives in acidic conditions so they try to get it as alkaline as possible. She received chemo on Friday. The chemo she received last time was considered a high-high does, and this time she received a medium- high dose. The beautiful thing about Mayo is the combine the naturopathic with the traditional medicine. So after she received the chemo they gave her the high dose of vitamin C and b-17 I believe it is. We have heard such great things about the naturopathic so we are so thankful she is there- the only hospital we know of in AZ that does this.

I talked to her today and she was in good spirits. Her pain is under control now, which we are so grateful, she said it was so painful it was making her vision hazy. She said the chemo gets rough in 7-10 days after receiving it. She said she has NO desire to eat and while it is less miserable than it was with her GI tract issues, she is f0rce feeding herself. And her dad keeps showing up at meal time to make sure his baby girl eats her grub :). Yeah Arnie!

Mayo thus far

So Lans has been struggling with pain quite a bit since her arrival. They have got it down to a 4 on the pain scale, they want to get it lower but for now both the team and Ilana are thankful for that. I guess she had a new MRI today and they will base their action plan on the results. So the next few day should be telling.

From our girl and her mama. .

When Ilana was first diagnosed she started a caringbridge blog. There hasn't been a lot of activity on it but I just got an email from Lans - she and Pam are going to try to update it weekly! This is great news as I feel I often get details wrong through the telephone chain. So visit here http://www.caringbridge.org/visit/ilanasmith/mystory to get updates on our girl. I will probably continue to post as well.

Lans transport on Monday went alright. It was door to door service. By the time she arrived at Mayo her pain was high and the staff had to go through her 5-inch chart. The doctors have been wonderful since her arrival. I guess on a pain scale of 0 to 10, if you are at a 4 they treat it with urgency, they never want you over a 4. They listened to Ilana's concerns. At Del Webb they were giving her morphine and other meds that did nothing for her and she didn't want, they got rid of all stuff that doesn't work. I guess they are going to have a naturapathic team come see her too. While the staff at Del Webb had become like family, we are so grateful she is in a cancer center where she can get such complete care.

I would just like to say how proud I am of my brother Ben. He is working so hard to take care of Ilana. When the nurse came in and told her about the naturapathic medicine Ben ordered all sorts of teas she recommended. He makes her fresh fruit smoothies and everything he can do to get her better. They have applied for social security but had to get all their tax stuff together. All their tax stuff was on their computer and the server was down. So Ben stayed up all night fixing the server so he get the information he needed from their taxes. The next night Matthew was sick and he got up hourly with Matthew. When he showed up to drop the boys off at my house he looked like the living dead. He's thin and exhausted and scared, but he keeps going. He is taking such good care of his little family.

Mayo Monday

I didn't have a chance to talk to Ilana today because she was on the phone and eating lunch when I called the other line (she's quite popular). But I have it on good authority (Pam) that she was doing much better today and heard she was even laughing from Jaimee. Oh how we love a good day! We look forward to many more.

Tomorrow she takes the ambulance ride to Mayo Hospital. We are so thankful. All doctors working together under one roof to get our girl better. Praying her treatment will be every bit as wonderful as we hear it is there!

My Visit

She was frustrated after taking the picture that she didn't have the strength to give her normal smile. . . I think she is just stunning.
I hadn't had the privileged of seeing Ilana for a few weeks because I had bronchitis and didn't want to share. I needed to see her and fortunately my husband was able to rearrange church meetings last night so I could be with her.

Being with her is so bitter sweet. Yesterday when I arrived outside her room I could hear her talking to her nurse with sobs of pain. My heart broke. As I held her hand, tears streamed down her face as she spoke through her excruciating pain in a near whisper and voice breaking, "Why is this happening to me? ... I miss my kids . . . I need to be with my boys."

She had been in extreme pain for almost 3 hours before they could give her more medicine to help with pain. While seeing someone you love so much hurt is absolutely gut wrenching, Ilana continues to amaze and inspire me. I see this girl who's physical strength is gone, unfortunately not strong enough to stand on her own, but she lays there with all the kindness in the world: a silent warrior - eyes closed, tears streaming down her face, firm grip on her bed rail. She is working so hard to get better and to be strong for her family. She is my hero. And she is radiant. Chemo, no make up. . . doesn't matter, she is absolutely drop dead gorgeous. Her inner beauty truly shines through. Every moment with her I treasure. I can't wait until she is better and we can play like we used to.

I took the boys over to see her this morning. I made Matthew shake his booty for grapes. Ilana loves when he dances :) Andrew just sat there in his perfect chubbiness. They had to take her for the spinal chemo just moments after we arrived, so it was a short visit but I am certain the boys were so happy to see their mama.

Movin' to Mayo

Pam (Ilana's amazing mama) has been working with Ilana's insurance to get her moved to Mayo Hospital (not usually covered in her network). Del Webb has been wonderful to her, but it is no secret Mayo clinic has the best of the best in the nation. Pam's work has not been in vain. They are moving Ilana to Mayo Hospital in Scottsdale within the next few days. We are so thankful this has worked out.

Lan's is tipping the scale at 99 lbs. Up a pound from last week. She is terrified to go through another round of the high dose chemo so we are thankful that when she is strong enough that she will be at Mayo to do it!

Feeling a little bit better!

After a rough couple of days our girl is feeling a little bit better. The pain killer my bro suggested that is not a narcotic is finally doing the trick and her bowel issues also a little bit better too. Now for fattening her up!

Unfortunately the good days were numbered to 2. Her bowel has continued to shut down and then get a little better and then shut down again over and over again. They think it is because the heavy narcotics in the pain killers. So they put her on pain killers without narcotics and she is in so much pain - in her pelvis, femur and back.

They were supposed to start the high dose chemo yesterday, but the doctor said she wasn't strong enough right now she wouldn't survive. So Ben is just worried sick, with the rest of us, that they aren't doing anything for her. Her tumors continue to grow and pain worsen, but they can't give her the chemo. Our poor girl is just getting so small. She's not able to eat. Ben has been spoon feeding her puree fresh fruit smoothies to get some nutrition. Cancer sucks.

But truly their is opposition in all things, with this horrible disease in our girls body their has been a tremendous outpouring of love. We are looking to raise money for the naturopathic medicine after the stem cell transplant or sooner if they can't do anything for her at Del Webb. My cousin is looking to host a zumba marathon to raise money for Lans and her co-worker emailed this morning and has raised $1000 selling lymphoma bracelets. People are amazing.

A good day!!

I called Lans last night and she said, "Today was a good day!" She always tries to stay positive by saying things like, "It was a little bit better than yesterday" but "a good day" we dream of her saying! Her cell counts are up to "normal" levels which means she has been able to see the boys every day which boosts her spirits. The pain in her lower back and pelvis that she originally went back in for had subsided, but had been bothering her a lot again in recent days, but was gone yesterday. She was eating some solid foods. And my bro had been making her some all fruit and veggie shakes the sweet nurse had told her about. My heart skipped a beat to hear her smile.

They delayed chemo a week to let her get some of her strength back. If she's a 100 lbs right now I would be very surprised. Love our girl!

I got more info on that nurse who had non-Hodgkins lymphoma. I guess she is a traveling nurse and spent one day on Lans floor, so truly a stroke of luck or an act of God. Like Lans her lymphoma had also spread to her Central Nervous System. She like Lans received the hi dose chemo, so did she. And like our girl will shortly receive a stem cell transplant, so did she.

This nurse had been told there was nothing else they could do for her. And she said she was wasted and ready to be done. She was in Hospice and weighed 90 pounds. Her husband was not willing to give up on her and carried her in (because she was to weak to walk) to this naturopathic doctor at Mayo. I guess they hit her with high doses of vitamin C, hydrogen peroxide and some B vitamin. She has been in remission for 9 years. Unheard of for Lymphoma of the CNS.

We have all been walking a little lighter after hearing such an optimistic story of an apparently drop dead gorgeous, healthy 65 year old woman who had the EXACT same thing as our girl and is cured. I guess they just have the program at Mayo and there insurance isn't covered there, so we will have to do some fundraising or see if since they don't offer the services she needs at the hospitals covered by her insurance if they have to cover it.

So the tube in her nose is out again!!! Still a liquid diet and mostly water to start, she's taking it really slow.

Her nurse on staff came in today. Nine years ago her nurse also had non-hodgkins lymphoma. She had gotten down to 90 pounds and her husband had to carry her into the hospital because she was too weak to walk. She switched to a homeopathic doctor and she said it made all the difference for her.

Ben and Lans are very very interested. Lans body, like the nurse, is so wiped out. I think after the stem cell transplant they might try to switch over.