Update on Jenene - August 13, 2011

For Jenene:

“You're out of the woods, You're out of the dark, You're out of the night.Step into the sun, step into the lightKeep straight ahead, For the most glorious place
On the Face of the Earth, Or the sky”

“Hold onto your breath, Hold onto your heart, Hold onto your hopeMarch up to the gate, And bid it open”
- The Wizard of Oz

So she is recovering nicely from her bout with her seizures. We saw some drastic improvements over the last 24 to 36 hours and now her breathing and feeding tubes are out, she is awake (for the most part) and alert and speaking to us. She had a few questions about where she was and how she got to the ICU, but all in all she has been handling all the news very well.

She was a bit disorientated when she was first awoken from the sedatives and she still was not able to talk all that well. But as the hours wore on, she got stronger and more alert and started recognizing where she was and what was going on around her.

The REALLY great news is that she had a bone marrow biopsy a few days ago, and the test results came back and the bone marrow was cancer free, so that means she is 73 days cancer free.

She was hooked up to a breathing and feeding tube the last few days and that is now out. She was also hooked up to an EEG which measures her brain waves and brain activity and she is now detached from that as well. A speech therapist came in to check her airway and judge to see if she was able to swallow and she has been cleared by her.

The doctors are really positive about her recovery and they are thinking that she will be back up to 14K tonight or tomorrow; and that is making both ourselves and the folks on 14K happy.

We are still selling wristbands to help fundraise for her an orange - Choose Hope Leukemia Awareness wristbands for $3.00 each in various sizes and a black - Stupid Cancer wristbands for $5.00 in one size but 2 types - one with the middle finger and one with a birdie.

Again, Donations to Jenene - check or money made to Jenene Philips and send to 3543 SE Belmont St, Portland, OR 97214. Or by debit or credit card at http://jenenephilips.tumblr.com/.

Visit her blog for this or older updates at http://neeners-updates.blogspot.com/.

Thank you everyone who commented or called or came up, she will be back on 14K in a while and we will let you know when it is ok to come visit.

Thanks

Update on Jenene - August 12, 2011

Last night was very frightening. At about 9:15pm last night she began to have a seizure while she was sitting up in bed. She fell backwards onto the bed, but her head and left arm were over the side of the bed. I rushed to her to see if I could proper her back up and get a response from her, but I couldn’t. I then went out in the hall and called for a nurse. The nurse rushed in and started getting her back into the bed while also calling for more help. They worked on her for a little bit, with her getting a oxygen mask and them hooking her up to monitors to check her blood pressure and blood oxygen. She came out of the seizure, but then started to fight against the nurses and the care they were giving her (taking the mask off her face and the lead off her finger). But she calmed down and slowly fell asleep. About 15 minutes later, she began to seize again, luckily the nurses were still in the room, but unfortunately this was a big seizure that stopped her from breathing which in turned stopped her heart beat. They started compressions and got oxygen running through her. The rapid response team came in and started to assess her, and they were trying to get her heart beat back and her breathing normally. Once they got her rythum back they decided to intubate her with a breathing tube and move her down to the ICU.

I contacted her Mom, Charlene and her Dad to give them the news as they were prepping her to be moved to ICU. Diane and Scott, and her Dad Don and her Aunt Jacque and Uncle Dave came up to be with her. We could only visit 2 at a time, so we took times.

When she got to the ICU they still had her intubated and hooked up to oxygen, a feeding tube and they had to install a catheter. They took her to get a CT Scan where they discovered a shadow on the front and back parts of her brain. But they wanted to be sure what was going on, so they ordered an MRI to be done and the technician did not discover anything too bad, but they are having a neurologist come and check the MRI and CT.

About 11:30pm or so, she had another seizure in the ICU. They got her back under control and waited for the MRI Tech to come get her. After a few hours of giving her meds and fluid she was hooked up to an EEG machine to monitor her brain waves and brain activity. At about 3:45am she was brought down to the MRI under heavy sedation to do a full brain evaluation.

Since the MRI she has been a bit responsive to pressure and has awoken in small amounts and has moved with pressure and responded with head shakes and nods but is still very sedated.

They do not have an idea yet of what may have caused the seizures. They are going to perform a lumbar puncture to check for infection. But as of now, they are just keeping her medicated and checking her responses and watching her closely.

I will update more once we know more.

Thanks for the support.

Update on Jenene - August 11, 2011

Sorry it has been a while since I have last updated you all on her condition, it has been a pretty hectic few weeks since she has been out after her GVHD visit.

Well unfortunately she is back in the hospital and back on her GVHD Diet, it sounds as though she had another flair up of GVHD as she has not been able to keep much down (including her meds). Not quite sure what is actually going on, as she was admitted while I was at work. I will update more once I know, but I thought I would at least send out an email.

She is back at the Kohler Pavilion 14th floor room 27. Come by and visit if you wish, she is pretty out of it currently, but may peak up a bit with some rest.

Also, as a fundraiser, we are selling wristbands about cancer and leukemia awareness. We have two kinds for sale:

1. A Choose Hope leukemia awareness specific orange wristband that states: “Say It, Fight It Cure It.” the color orange is for Leukemia Awareness. These wristbands are $3.00 each and we have 2 different sizes, youth and adult (we have only a few Extra Large ones, but they are available).

2. StupidCancer.com ‘I2Y’ black wristband. We have 2 kinds of these, a family friendly one that states stupid cancer.com i[2]y with a little birdie, and the same saying with a middle finger as well (both the bird and the middle finger is figuratively saying that we are giving the bird to cancer, and i[2]y stand for I’m too young). These are $5.00 and are only in one size (most likely adult).

Please contact either of us if you are interested: jmphilips503@hotmail.com or rossyoungman@gmail.com.

Thanks, I will update more when I get more information.

Update on Jenene - July 21, 2011

I forgot to post this in July:

So it was confirmed today that she has Graft vs. Host Disease - GVHD: (http://en.wikipedia.org/wiki/Graft-versus-host_disease); meaning that her body is fighting against Charlene’s grafted stem cells.

They are treating her with steroids and antibiotics and a limited graft vs. host diet (http://www.health.qld.gov.au/nutrition/resources/oncol_gvhd.PDF) which is mostly liquids, low fat and bland foods.

She will be in the hospital for about a week while they combat the GVHD. She is again in the Kohler Pavilion; floor 14 room 11. Come on by and have a visit. Remember to not come if you have been sick. You will need to gown and glove up (no mask is required this time).

If you would like more information on how she is doing, please call or text her at 503-341-3498 or email her at jmphilips503@hotmail.com. Or again, come up and see her.

Donations to Jenene - check or money made to Jenene Philips and send to 3543 SE Belmont St, Portland, OR 97214. Or by debit or credit card at http://jenenephilips.tumblr.com/.

Visit her blog for this or older updates at http://neeners-updates.blogspot.com/.

Update on Jenene - July 19, 2011

So for the past three days Jenene has been suffering from nausea, vomiting and diarrhea but had not spiked a fever of 100.5 degrees or more, so we had been monitoring her temp and making sure that she was eating and getting plenty of fluids. Yesterday (Monday) she had a doctor’s appointment and she was told to keep taking her meds (they took her off of a couple for now) and take her temperature frequently.

This morning (Tuesday) she woke up feeling nauseous and was vomiting and had diarrhea, when we took her temp she had gotten up to 100.5, we gave her about ten more minutes and took it again and it had spiked to 100.7. That is when we decided to call the clinic again and tell them that she was feverish, they told us to come to the clinic and expect to be admitted to the hospital. On the way to the hospital, we took it again and she had risen to 101.3.

So here we are…

She checked in to the clinic and had cultures and blood drawn. Her temp there was back to 100.7 and finally to 99.7. She received fluids and antibiotics in the clinic and we waited for a bed to open up. She is now at the Kohler Pavilion again; 14K room 11, with a nice view of the Willamette River and the top of the tram.

Her blood work came back in normal ranges, and her temp has gone down to normal levels again. She had a chest x-ray and will have a GI Consult (http://en.wikipedia.org/wiki/Gastrointestinal) tomorrow.

Tests have yet to come back, but she has been still fighting the nausea, vomiting and the diarrhea. She has been given meds for all and she has been sleeping for most of the day.

Home life has been good for the most part. Our friends and roommates Sean and Jen have been helping out when they can. Mom Diane comes over and spends a few hours with her a few times a week. She came over on Sunday night when Sean and Jen went to a Mariners game and I was working in the evening (Thanks again Diane). Dad Don was here for a few hours this afternoon while I went to get more stuff for her visit here, plus he comes over when he is home he comes and visits; occasionally watching a NASCAR race.

She has been losing her appetite a bit, eating smaller meals. We take her temp about 2 to 3 times a day (more if I am being pushy). She is supposed to drink at least 2 liters of water/liquids a day, and she gets there for the most part. But al in all she has been feeling good at home.

She has been a little lonely at home (no offence Jen and Sean) with very few people coming to visit. We know that everyone has lives to live (trust me we are a bit jealous of the ‘normal life’) and we don’t want to pressure any of you to come and visit, but she has felt a bit lonesome since being out of the hospital (probably getting a little tired of having me around all the time…LOL!)

Give her a call or a text later in the day tomorrow (Wednesday) at 503-341-3498 or send her an email jmphilips503@hotmail.com. She will probably be here for a few days.

Donations to Jenene - check or money to Jenene Philips send to 3543 SE Belmont St, Portland, OR 97214. Or at http://jenenephilips.tumblr.com/.

Visit her blog for this or older updates at http://neeners-updates.blogspot.com/.

Thanks;

Ross

P.S. I made my goal for Team in Training of $750.00 and the Heathman has promised to match it to make the full $1,500.00 due. Thanks to all who donated and thank you SO much for the support of the hotel!

Update on Jenene for June 30, 2011

It has been a few weeks since I have sent out an update, so I thought it would be good to signify special days and events:

So it is Day +30 – Thirty Days since her NEW birthday. Things have certainly moved along in different speeds and we are looking at days with hope and with great anticipation. She is being more and more optimistic about her outcome with her health and she is looking forward to Day +60 when she will be able to go OUT and enjoy a favorite meal at a favorite restaurant, for right now it is home cooked meals and low bacteria diets (which will continue past Day +60).

She has been having clinic visits and doctor office visits twice a week (Mondays and Thursdays) and she is improving her counts with each visit. She takes about a dozen pills during the day (two rounds during the day), and her dosages change depending on how her counts are. Temperature checks twice a day, and we are flushing out her lines once a day. Her exercise is trudging up and down the stairs to the room every day (they are steep stairs, so exercise is pretty strenuous, LOL). She gets fatigued easily depending on the day, but most of the time she is either on her computer chatting on Facebook, texting to friends and family, or she is watching TV or DVDs.

She is able and very willing to have visitors. Please contact her first before coming over (either 503-341-3498 or at jmphilips503@hotmail.com). Her bedtime is usually by 9pm and she is usually up by 10am, but other than Clinic Days, she is pretty free most of the day!

She is again looking for donations to help with bills. If you are interested and willing, please donate to her by sending the donation made out to Jenene Philips to either 3543 SE Belmont St, Portland, OR 97214 or 1392 SE 64th Court, Hillsboro, OR 97123.

Or visit her website with a PayPal account attached, so that you can donate to her via a credit card. That site is: http://jenenephilips.tumblr.com/.

Please pass on the following link to those who may want to know about her past treatments and to keep a watch on her progress: http://neeners-updates.blogspot.com/.

Thank you all for your support.

Ross
Team in Training: http://pages.teamintraining.org/oswim/portland11/ryoungman

Update on Jenene - June 4th - Day +4

It is Day +4 and things have been a bit up and down for Jenene. She has had a few days and nights of nausea and she has been suffering from the mouth sores again. But all in all she has been doing well. The doctors and nurses here have been trying to manage the pain and nausea with medication. She has been receiving treatments of Methotrexate (http://en.wikipedia.org/wiki/Methotrexate#Chemotherapy) to help control her blood cell growth.

No true timeline on when she will be leaving the hospital, but she is determined to be out by the 14^th. We will know more after the next 3 to 4 days, as the doctors say that these days (Days 4-7) can be the toughest.

She does have a great view up here on the 14^th floor. Great views of the Willamette and Mount Hood (when it isn’t obscured by the clouds) from the huge window in her room. She will let folks know when she will be allowing more visitors. Please keep contacting here at jmphilips503@hotmail.com.

Charlene has been recovering well too, spending a lot of time walking around the SE Portland area.

If you still wish to donate to her, please make the checks out to Jenene Philips and you can send them to either 1392 SE 64th Court, Hillsboro, OR 97123 or 3543 SE Belmont St, Portland, OR 97214.

Or visit her website with a PayPal account attached, so that you can donate to her via a credit card. That site is here: http://jenenephilips.tumblr.com/.

Please pass on the following link to those who may want to know about her past treatments and to keep a watch on her progress: http://neeners-updates.blogspot.com/.

Thank you all for your support.

Ross

Team in Training: http://pages.teamintraining.org/oswim/portland11/ryoungman