The only thing constant is change

I said earlier that Adrienne has more shortness of breath. Turns out she now has pulmonary edema. They started her on lasix again after the kidney doc said ok since her creatinine is down now. Oh, she has a new infectious disease doc too. I've lost count of how many dogs there are now. She's definitely getting the star treatment.

Adrienne got the star treatment today. There's an amazing shower cap that washes your hair while you sit in bed. Curt and I also got a few of her favorite foods for the icu fridge. Yes, this means she's eating.

Not much to report

Adrienne had a great day yesterday. Today, she's feeling a bit more short of breath but her numbers look good. I trust how she feels more so we're keeping a very close eye on her. I was planning to go home for awhile to work this afternoon but have decided to stay after all.

It's amazing how the numbers in ICU run your life and your mood. The doc this morning mentioned watching her day by day, then he said hour by hour. Sometimes it seems like minute by minute. She just started to get cold, which usually means another fever is coming. I'll try to keep you posted. Again, thank you to everyone for your calls, comments, and emails.

Sitting up

Adrienne is actually doing a bit better this afternoon. She's been on BIPAP most of the day but her sats and respiration are stable. They added a nice dose of dexamethazone and 3 new antibiotics. Hopefully one or all of.these helps the fever and the infiltrate.

ugh

Thank you to everyone for your emails and comments. I've been reading them all but Adrienne isn't up to it.

She's been on the BIPAP all day and they told me they may need to intubate later today as her lungs are too stressed. Adrienne wants to try to breathe on her own and is doing okay so far but they're keeping a really close eye on her breathing and sats.

The plueral effusions are stable but there's a lot of "infiltrate" in the lungs and they don't know how much is disease and how much is infection. The only way to know for sure is to bronch her and that's too dangerous right now. She's been running fevers all day so they're throwing everything they have at it and have added steroids too.

I've been talking with Dr. O and he's keeping in touch with the docs here. Everyone has been really nice, especially with my crying. I can't cry in front of Adrienne.

ICU

Adrienne had a lot of trouble breathing overnight so they moved her to ICU this morning. I'm updating from my Blackberry. She's been on and off BIPAP and they drained one effusion but they're all over. She's comfortable now but the breathing issues are really frightening for her and for all of us. The pulmonologist said its unlikely that she'll survive this but we're still trying. I told them to intubate if needed because I don't want her struggling and afraid.

If this turns out badly, I hope no one will say she's in a better place or out of pain. She wants to be home with her family.

Mad and Frustrated

That's how I'd describe how Adrienne is feeling right now. Her creatinine (a measure of kidney function) has been going up and up since she was admitted. The nephrologist came to see her yesterday, they did an ultrasound and UA test, and it looks like she has some chronic kidney disease, probably as a result of her prior treatments. They stopped the antibiotic that causes the most kidney toxicity and her numbers came down slightly today. This is good news and hopefully the trend will continue.

She's still tied to the oxygen, which is really frustrating for her. We got a longer line in her room so at least she can get out of bed and she was able to take a shower yesterday. And yes, the boys (Caesar and Moe) came to visit last night, which she really enjoyed. The plan now is to try to get her home and then start Rituxan to debulk the tumors. The Rituxan doesn't kill the cancer cells but it does kill the inflammatory cells that surround the cancer cells and actually make up the bulk of the tumors. If we can debulk the tumors, the pleural effusions should resolve on their own. Yes, they're still there but haven't changed since Monday, which is good news too. As I keep saying...a day at a time.

Mobile

We were able to get Adrienne into a wheelchair last night and go into some beatiful gardens at the back of the hospital. We put an oxygen tank on the wheelchair and got her disconnected from the IV pole. It was really nice and not too hot. We're hoping the dogs can come for a visit later today.

A few people have asked for the address here so here it is:

Adrienne Boardman, Room 202
St. Rose Dominican Hospital
8280 W. Warm Springs Road
Las Vegas, NV 89113

Stable

Things haven't changed much today except that I think I notice a bit of edema in Adrienne's feet/legs. The doctor said this would happen. They stopped the diuretics as she was getting dehydrated but will probably have to start again. It's a tough balancing act, but they're doing a good job so far. Fevers come on each night, which is typical for her when she had a lot of disease. Chemo starts again today.

We're very happy with the care she's getting and she even eats some of the hospital food, a first for her. I'm hoping to get her home but we're taking it a day at a time. She's dependent on oxygen so we need to get that whole thing working at home.

sleepy day

Adrienne has been very tired today. Yesterday, she was having painful muscle cramps in her hands and feet so we tried muscle relaxers after other things failed. I'm sure that's contributing to the fatigue. The muscle spasms were probably caused by the imbalance in her electrolytes. She's been on so many meds plus lasix to get the fluid off so now she's all out of whack. Her lungs are doing much better and the pleural effusions aren't filling up again so they can start to give her some fluids. This is a fine balance, making sure she doesn't retain fluids while giving her enough to keep her kidneys and electrolytes happy. Her creatinine is up so fluids would help that too. No fevers so far today.

Fever tonight

Today was looking better but tonight Adrienne spiked a fever. Her breathing is much improved and we were hoping to get her to a nasal canula tomorrow, but now we'll have to see how things go. For now, she's sleeping.

Second one done

Adrienne just got the other lung drained. This one had much less fluid but seems to have provided more relief. She ate a little bit of lunch and is resting now. The hardest part is getting to the commode (thank goodness for those) but she is comfortable while in bed. Her glucose went high so she'll get some insulin this afternoon. She's had this before during transplant but it resolves itself with time. We'll get pathology back on the fluid tomorrow and will hope that it doesn't come back. If she can go 24 hours without a fever, she can start chemo again.

Thoracentesis done

The docs were concerned so Adrienee had the larger effusion drained this afternoon. She was not happy at all but now seems to be feeling a bit better and even ate some dinner. They can only do one side at a time so they'll do the other one in the morning. They drained 1.3 liters, about 1.5 times the normal amount. Hopefully it won't fill up again. She's resting comfortably now.

911

Adrienne has had increasing shortness of breath the last two days and spiked a fever last night. By this morning, she was having a lot of difficulty breathing and looked quite gray/blue so I called 911. At least she got a couple of cute EMTs to take her to the ER. They got her on oxygen at the house so she started feeling better right away. They just put her into an intermediate care room, one step down from ICU. She's gotten 3 different antibiotics and a slew of tests. Turns out she has pneumonia in one lung and pleural effusions around both lungs. The plan is to keep her stable today, get more antibiotics on board, and then drain the effusions in the morning. Please pray that things go smoothly. I'll update when I know more.

Day After

Daniel's 21st was yesterday. We all had dinner together and then he went out with his friends to celebrate his birthday. Here he is the day after...with barf bucket at the ready. It doesn't look like he's used it yet. He's not normally much of a drinker but, well, it's his 21st.

Adrienne is about the same. She thinks the pain might be just a little less sharp but her coughing/shortness of breath seems a little worse to me. The procarbazine is easy so far and we found the etoposide so she'll start that on Friday. As always, we remain hopeful that this regimen treats her well and that it does its job.

Going Home

I'm posting really quick as we pack up to go to the airport. We're definitely ready to come home for Adrienne's birthday tomorrow and Daniel's on Wednesday. It's going to be 98 degrees tomorrow. We saw the doc this morning and the plan is to start oral procarbazine and etoposide as soon as possible. The problem is finding the etoposide so hopefully they can find it in Nevada. Adrienne's pain seems pretty stable and manageable for now. The PET scan showed disease everywhere it was last December, plus more in both lungs and a new small lesion in the liver, but overall, it was less than we were expecting. I don't remember the term for the pleural effusion but basically, it isn't the type that's drainable. Getting rid of the cancer will get rid of the effusion.

Here's one more picture of Moe that made us smile (and shows just how tiny he is):


"Ade & Mom, Dad ordered Papa John's pizza. He wouldn't share. Can you please call him and tell him to give me a slice? I have decided to go on a 'hunger strike!' Moe"

Still in NY

We are now staying in New York until Monday night. Yesterday, Dr. O prescribed a new pain killer for breakthrough pain as Adrienne was getting too much Tylenol with the Lortab. Our favorite NP, Ellen, called 11 pharmacies until she found one that carried the drug. Dr. O doesn't want to increase the dose of Oxycontin until he evaluates Adrienne's breathing on Monday as she has some shortness of breath from the pleural effusion and a new cough. In spite of it all, we were able to have some fun yesterday afternoon, seeing Julie & Julia, which we thoroughly enjoyed, even though we were sure that we were the youngest ones there. Well, Adrienne was the youngest and I was the next youngest. Yes, the crowd was full of old ladies. Still, we highly recommend it.

Curt has been keeping our spirits up with notes and photos from Moe. Here's a few that we particularly enjoyed.


"Mom & Ade, I decided to mark this bush so I could guide us home. It worked! Man 'm I hungry. I am having breakfast right now. Good luck today. Hurry home so we can go on the walk together. Ps.. I am the new 'Alpha.' My brother just wants to chase trucks. :) Moe"










"Mom & Ade, Wow! Do I feel better. I took the money Dad gave me for digging the hole for the Lantana and had a full body massage at Green Valley Spa. You gotta try it! Moe"













"Mom & Ade, Dad doesn't know how to make the bed. I had to tuck in everything! Moe"

PET Scan Done

Adrienne had her PET scan this afternoon. These scans have been excruciating since she has to lay still on her back, the most painful position, for a long time. She knows she has to get through it but she sobs the entire time. Hopefully she's done with these for awhile. It breaks my heart to see her go through this but I try to give her a little pep talk to get through it. After today's scan, we went to our favorite pet store about 2 blocks away to see the puppies and to get Moe a new collar. Curt's been sending pictures and updates from Moe each day, definitely a high point.

I don't have the reports yet but I did talk with Dr. O'Connor late this afternoon. He was very positive, which is what we love about him, and said that we're not giving up and she still has options. Obviously, we need to get treatment right away so he's going to try to get her on something either on trial or off trial to bridge her until SGN-35 is available, and he's going to try to get her something on the west coast. We're going to hang around until Monday and fly back home Monday night after seeing him. He promised to have something worked out by then. If necessary, we'll go home for a week and then fly back.

I won't lie...this has been tough but Adrienne is ready to fight yet again. She doesn't start classes for another 10 days so we have until then to work things out. She'll take the semester off if needed. Her birthday is on Tuesday, August 18 and Daniel's is on Wednesday (yep, they're a year and a day apart). We're planning to go to Santa Barbara on Wednesday morning (with the dogs, of course) so we can see Daniel for his 21st birthday (congratulations!!!!).

The biggest issue is to keep this pain under control so that's tomorrow's goal. Right now, she wakes up during the night, sometimes sobbing, until we can get the pain meds into her. I asked about the pleural effusion; it doesn't cause pain but it is causing her some shortness of breath. Draining it will be an issue because it's separated into pieces and hard to get to so there's no solution there yet. I'll post when I know more.

New York Update

We landed on Sunday night to discover that Eric McLeod Brule (http://kathmm.blogspot.com/) passed away unexpectedly earlier in the day. His mom, Kathy, and I have shared a lot together with our kids who were the same age. Both Eric and Kathy always had such a great, uplifting view on life and their difficult situation, and helping other people whenever they could. Our hearts go out to Eric and his family.

We had quite a meet-up at Dr. O's office on Monday morning. Bekah (http://truebeautyneverhurries.blogspot.com) was there as well as Kara (http://karalees.blogspot.com/) and both got great reports. Bekah is going to be able to take a chemo break and KARA IS IN REMISSION. How great is that after her docs at Vanderbilt told her to go home and get her affairs in order? Wow! Afterwards, we went downtown to Adrienne's favorite pizza restaurant...called Adrienne's.

We discussed options for Adrienne but decided to get an MRI to get to the source of her pain. She had the MRI yesterday and we got the report this afternoon, which was not good at all. Considering what's going on in her little body, it's amazing that she looks so good and has been able to walk all over the city. I don't have all the details except that there's a large pleural effusion that takes up 1/3 of the space of the left lung as well as new disease throughout her spine. Adrienne has been a bit short of breath, which we thought was caused by the pain meds, but the effusion explains it. The plan is to get a PET scan in the morning and hopefully get the effusion drained tomorrow or Friday. Bad news: the SGN-35 allo trial will not be available until January. I'll post again as soon as I know more.

Not Herpes Zoster

Adrienne's pain hasn't improved, in fact, it's gotten worse so it isn't caused by shingles. I keep saying, who else hopes for infection but cancer patients? She got a transfusion last week and upped her oxycontin yesterday so overall she's feeling a bit better but we're still without direction. We had considered doing Doxil as some docs thought it would be safe even with her cardiomyopathy but I spoke to the doc at COH and he didn't think it was worth the risk because any adverse reaction would be catastrophic. Remember the oath: Do no harm. Okay, we're convinced.

But once again we're without direction. I'm hearing conflicting information about the SGN-35 trial and most things seem too dangerous to try. Since Adrienne has been so heavily treated, her side effects from everything are greatly magnified and she's getting less and less benefit. New biologics are the only answer. So, we're off to New York to talk with Dr. O'Connor. We'd prefer treatment at COH if they can, but otherwise we'll have to figure out how to go back and forth to New York. If anyone has spare miles on American or segments on Jet Blue, please let us know.