Liquid Bengay?!?

Just a funny story...

Brian was talking with Kathy tonight when she said she better go as they were going to be in soon with her evening ritual of medications. This is how it went:

Kathy: "They'll be coming in to give me my liquid Bengay, Demerol, Morphine..."

Brian: "Liquid Bengay?"

Kathy: "Wait, no, that's not right. What's the allergy stuff?"

Brian: "Benadryl."

Kathy: "Ya, that must be it. I don't think liquid Bengay would help me much."

Are we there yet? YES!

So, a platelet level of 10,000 was the magic number to get Kathy moved out of ICU and back to the 14th floor. This morning, she went from 5,000 to 9,000...an amazing jump! Brian just spoke with her less than an hour ago and her levels are now to 13,000!! The doctors will be meeting soon and hopefully she will move out of ICU tomorrow. :)

If you are interested in sending her a birthday card (May 3rd), this is the address:

     Kathy Parrott, c/o OHSU 14KPV 
     3181 SW Sam Jackson Park RD
     Portland, OR 97239

Silver linings

There isn't a lot to update on but wanted to let everyone know the little that we know.

The bleeding has stopped, which is good news, but it could easily start up at any time. It is still a very critical situation because if the bleeding restarts it could be life threatening. She will be in the ER for at least 7-10 days. She has her cell phone so if you want to reach her use that number. I don't know her new room number or her new direct line. I've asked Brian to find out about mail and whether or not it is the same address as before.

Brian just talked to Kathy a bit ago and she sounds okay; they didn't get to talk long as her pain meds were kicking in. She is under a lot of stress and needs everyone to be sending her lots and lots of positivity. Her birthday is coming up on May 3rd (Thursday) so let's do what we can to make it the most cheery birthday it can be even though it will be spent in the hospital. As a reminder, flowers (both artificial and real) are not allowed but cards and mylar balloons are. 

Please follow and re-share the link to this blog so that everyone has the most up to date information.

About the title of this blog post...

One of my favorite musicians to listen to when I need calming yet meaningful music is Ingrid Michaelson. These lyrics, from her song "Are we there yet" seem fitting to this current situation:

          They say there's linings made of silver, folded inside each raining cloud.

          Well, we need someone to deliver our silver lining now.

For complete lyrics, visit: http://www.azlyrics.com/lyrics/ingridmichaelson/arewethereyet.html

Let's keep her strong!

In the best interest of what Kathy needs right now, here are some important reminders:

Limit hours and frequency of visitations. Kathy needs her rest. While there are not set visitor hours for the hospital we would expect that her visitors observe normal awake hours, 8:00 AM to 8:00 PM.  If you are unable to visit during that time please do not visit. Also, an excess of visitations might be wearing her down as she tries to visit with everyone. While it is amazing that people want to visit with her daily, please know that it may be too much for her right now as she tries to keep her strength up to fight this battle.

Do not visit if you are sick or have been exposed to ANYONE that is sick. You (or the person you were exposed to) should be symptom free for at least one week before resuming visits. It is killing me and Brian that we can't visit her due to illness in our household but it is absolutely essential to keeping Kathy healthy.

Leave your baggage at the door. This is not the place to fight, bicker, or be negative. Kathy needs a positive environment and her visitors should help surround her with happiness. If you need to take a phone call or deal with an issue take it outside. If you do anything to bring her spirit down I will personally kick your butt. :)

Platelet Update

We thought this morning that a solution had been found for Kathy's platelet situation; a friend and visitor was told by a nurse that they had found the donor and that her body was accepting the platelets. This turned out to be inaccurate information.

From Brian:

"My mom did not receive a matching donor until later in the day today. As of now her body is still rejecting the blood platelets because her immune system is wiped out. What they are doing now is introducing the blood platelets at a very slow rate in hopes that her own immune system will start to take over and start producing it's own platelets. So now we wait to see what happens. The good news is, she is stable, alert and able to visit a little."

Brian spoke with her just a few minutes ago and the head doctors will be meeting tomorrow to come up with a plan. They will also be doing another CT scan tomorrow.

Setback

Please send lots of positive thoughts towards Kathy. She has had a somewhat substantial setback. 

She has bleeding in her brain that they are having trouble stopping due to her antibodies rejecting the platelet transfusions that they are giving her. They are currently searching the Red Cross database for platelet donors that would be an exact donor for Kathy (to avoid the antibody rejection issue).

She has been moved to ICU and the next 24 hours are pretty critical. She is in stable condition right now, she is coherent but also has a lot going on so please keep this in mind if planning to call or visit. The chances of things getting worse with the bleeding are slim (5%) but if they do get worse it could kill her. 

Brian is making phone calls to try to reach family members right now. Please know that we are doing our best to get the word out quickly.

Going For The Cure

What a beautifully sunny and warm Monday for Kathy to get some fabulous news:

"Very good news today. The docs are telling me they are Going For The CURE. No bone morrow transplant needed. Probably more chemo."

She has been in the hospital for two weeks now. It really doesn't seem like it can be two weeks already. Her bone marrow biopsy was today and that should help verify that she is kicking cancer's butt!

Post-chemotherapy recovery

Kathy is on day 1 of post-chemotherapy recovery. She had her last dose of chemotherapy Monday (4/16) night. She will have 7 days of recovery before another bone marrow biopsy to see how her bone marrow is doing and to determine whether or not she will need a bone marrow transplant.

She is tired but doing better than she was the other day. They got her nosebleed stopped; but then, she bit her tongue! :) Rodger has stayed up there with her for the past week, but will be heading back down to Grants Pass soon. He will be moving their 5th wheel up to OHSU so he has a place to stay during her treatment.

Please continue to send her good wishes and thoughts. If you would like to post a comment for her you can use the "Wishes and Words" page to post a comment (this will put all comments in one place allowing her to quickly read them).

One Week

It has been one week since Kathy got her leukemia diagnosis and arrived at OHSU.

She is having a really rough day today. Her body seems to be responding to the chemo well; but, the side effects are making phone calls and visits very difficult. She has very little energy and isn't getting much food in; she also has a nosebleed that they are trying to get stopped (her low platelet count affects clotting). She has two days left in this round of chemo, then some recovery time.

I believe Rodger has turned off her cell phone. Please keep phone calls and visits to a minimum and be sure to check with Rodger before stopping by. If you need Rodger's number you can contact Brian or Melissa; if you don't know how to contact us, leave a comment and we will get the info to you.

You CAN!

Bone Marrow

We are getting lots of questions about bone marrow donation.

Kathy hasn't been told definitively if she will need a bone marrow transplant and if so, when. There is a good chance that she will need one.

The best donors are her siblings. If a sibling isn't compatible or is unable to donate then non-related donor will be sought. Other relatives such as Kathy's children, cousins, nieces/nephews, etc. will not be considered for bone marrow donation.

Although you may not be a match or eligible donor for Kathy, you may be for someone else. The National Marrow Donor Program encourages you to "be the match" for someone in need of bone marrow. Click the image below for more information (lots of great resources, FAQs, etc.)!

Live...

Trust me on this one. It is so true. Grab life with both hands.

Brighter than the sun

Welcome to Kathy's blog! I'm Melissa, her daughter-in-law, and I'm starting this blog for her.

I didn't know what she would want to call this blog, but I was thinking about it on the way to work when I heard the song Brighter Than The Sun by Colbie Caillat. I presume that this song is about falling in love; yet, the lyrics fit her situation of being blindsided by cancer.

"I swear you hit me like a vision. I, I, I wasn't expecting. But who am I to tell fate where it's supposed to go?"

In less than one week, her life has changed dramatically. It's been a whirlwind of doctors, nurses, hospitals, tests, scans, needles, bloodwork, and awful hospital food (I know, the least of her worries). When you consider all that has happened, she is in amazing spirits. She shines brighter than the sun.

"Oh, this is how it starts, lightning strikes the heart. It goes off like a gun, brighter than the sun."

This is how it starts, but this is not the end. It is only the beginning of her journey facing the C-word head on. As she said the last time I saw her: "Let's do this." That's right, you kick cancer's a**!

**Please Note: I will be post-dating blog posts so that they appear in the correct chronological order on her blog page.**

Arriving at OHSU

A beautiful view of Portland from up on the hill at OHSU.

Kathy arrived at OHSU around 4:00 PM on Sunday, 4/8/12. Her doctor arrived within minutes and laid out the plan. They were initially going to hold off on testing until the next morning but decided to get a jump on things. They did an MRI and CAT scan starting at 8:30 PM. In the middle of the night, her fever went up slightly so they decided to draw spinal fluid for a test.

What happened?

 

Kathy being unloaded from her airplane ride!

A lot, and it all happened very fast. Brian and I found out she was in the hospital on Friday, 4/6. At the time, we thought she had an infection in one of her vertebrae. She assured us that it was completely treatable and as soon as they figured out what type of infection and started her on antibiotics she would be fine. On Saturday evening, 4/7, they were still waiting for the infection to grow in the petri dish - this can take up to 24-48 hours so not abnormal that nothing had grown yet. On Sunday morning, 4/8 (Easter), we headed down to Medford to see her. She called us on our way down, at about 10:15, asking how far out we were (only 45 minutes). She said she just found out that they were transferring her to OHSU. I knew this wasn't a good sign, and she definitely didn't sound good. She ended with: "I'll talk to you guys when you get here." Brian and I hypothesized the remainder of the trip, and our fears were realized when we arrived...she has Leukemia. They were going to transport her to OHSU by ambulance, but none were available so she was transported by air. Brian went with her since Rodger needed to get things settled at home before heading up. They arrived in Hillsboro around 3:00 and then made their way to OHSU. Within minutes of arriving there, the doctor was in her room going over the plan of attack. Now, that's our kind of doctor! Brian was able to stay the night with her so she wasn't alone her first night up there. I am glad we were able to do that for her.