Monday, February 28, 2011

Hair is falling out...again

Lisa hair has started to fall out. Besides being a nuisance because it shows up everywhere...on pillows, shirts, floor, your's depressing. It's another physical reminder that this kid is sick. It's a total bummer and while you would think we would be used to it by now, the shock still runs thru me as my gut reaction in HOW will we do this? I know, the answer is...we just will, because we have to and we've done it before, but still the initial reaction takes my breath away and brings tears to my eyes. Lisa is fine with it....when asked is she wants a wig, she says no, just hats and tattoos on her head.

Other than the hair loss, Lisa had a great week last week. The kids and Mike were all home on winter break. The kids and I kept things pretty low key while Mike worked like a madman painting and updating bathrooms and other things around the house. I think it was his version of therapy....he could take something, fix it, make it better, he could control the outcome....something cancer has robbed us of.

Lisa's week consisted of eating, playing and goofing around. With a lot of mom willpower, she even went to her last ballet class. (That means her third for those who were counting). She did a great job even though she was having pain. She managed to even have fun and was very excited about getting a sucker at the end....ahhhh, the life lessons we learn from 6 year olds!

Unfortunately Lisa started off today by throwing up....she's fine now...eating breakfast and wanting to go to school. We think it was just congestion. She is scheduled to start chemo this week. We meet with doctor this afternoon to see if it's a go. Mike and I are on the fence how we feel about this. Without the chemo, her days are numbered. With the chemo, if she reacts the same way she did last time, her days are numbered and they are spent in bed with her feeling like she's dead.

I've come to realize we really do need a miracle to save her. Not a cure, but a good ole fashion water-to-wine, fish multiplying, laying of hands miracle. Interestingly enough the sermon at mass this weekend was "don't worry". Worry takes more energy than dealing with the problem one step at a time. So, we will face today, this week, this month, one step at a time. And, BELIEVE, BELIEVE, BELIEVE that God is watching over us and will choose to heal Lisa with a miracle.

Monday, February 21, 2011

Happy Birthday to Me!!!!!! Scan results in!!

YEAH!!!! I've only wished on one birthday candle today and already got good news.  Scans show:

MIBG results: Findings are consistent with interval response to treatment with residual MIBG avid widespread osseous metastasis.

CT scan chest, abdomen, and pelvis results: 1. Stable postsurgical changes/soft tissue in the retroperitoneum and enlarged left inguinal and iliac lymph nodes. No interval progression of disease.

2. Stable diffuse osseous metastatic disease.

In English...this means, that yes, Lisa still has lots of cancer, BUTTTTTTT the cancer in her bone is reduced including the skull bone on the left, spine, sternum, ribs, and pelvic bone AND there was no progression shown on CT Scan, in fact some of the lymph nodes are smaller. This means cancer did respond to the chemo and has shrunk in some areas and not progressed any since last scans in January.  It's a small win, but we will take it!!! Best birthday news EVER!!!!!!!!!!!!!!!!

Sunday, February 20, 2011

Still Waiting for Scan Results

Lisa has been improving a bit each day and seems almost back to her old cheerful eating self again.  She is still getting IV fluids at night because her potassium levels were low when she was checked last week.  She still has quite the annoying cough, but then again, so does Chrissy.  I think both of them must have had the same bug....Chrissy has been nauseous for the past two weeks, coughing and very tired.  It gives us hope that Lisa's problems could have been bug-based and not all cancer/chemo related.

Lisa finished all her scans last week and we are anxiously awaiting a call from the doctor tomorrow.  The doctor opted to push chemo out for another week so Lisa could have this upcoming week to build up her strength.  It also gives us a chance to review the scans to see if the cancer has progressed and have a better idea of whether or not we should continue with this chemo regimen. 

The kids are off from school this week and we don't have anything special planned.  With Lisa and Chrissy being sick the past couple of weeks, we're a bit reluctant to expose them to any big crowds.   Mike and I have been keeping busy painting and updating the house.  It gives us something to do and keeps both our hands and minds busy.

We finally got some good news!!! Maranda saw both her orthopedic doctor and neurosurgeon because of some neck pain she had been having.  Based on scans and exams, they see NOTHING wrong with her.  The neck pain and popping she gets comes from a way she is manipulating her neck.  Both docs have said "just stop doing that" it was so wonderful to here those words...what an easy's nothing, no worries, we walked out of their and it felt like a weight had been lifted!

Now, if Lisa's docs could just give us good news!!  We are anxiously waiting for Lisa's scan results....I've had my fingers, toes, legs, everything crossed  and have been praying, praying, praying for good news on the scan.  We'll let you know when we know!

Thursday, February 10, 2011

Thursday Update

Mike here at the controls:
Lisa perked up a bit Wednesday and began eating pretzel rods and Frito Cheddar Cheese Dip. (Hey at that point we'd let her eat the sheets if it meant getting something in her.) She also began drinking more water which was probably the result of eating the salty pretzels.
Lisa was discharged Thursday at about 6PM and I took her to the cottage because Christina, our 11 year old, came down with a temperature of 99.5 on Wednesday and 101.5 on Thursday. I couldn't take Lisa home with a bug in the air. So here we are for the next couple days.
Lisa was sent home with with her port accessed and HomeMed delivered a weeks worth of IV treatments. We'll run these during the night to keep her hydrated.
She's sleeping a lot and mentions more and more that her legs or something is sore. Lisa doesn't complain. It's more of an observation of hers when something hurts. It's an ominous thought that I have at those moments that things aren't going quite as planned.
Next week will be a "scan week" and we'll know how well Lisa is doing on the inside. Barring any bumps along the way we'll be holding our breath until afterward and won't update the blog.
Say a prayer, light a candle, work the beads, whatever you got she needs it now. Thanks for sending any positive thoughts you can spare.

Wednesday, February 9, 2011

Reporting from Motts floor 7---dehydration update

As I suspected yesterday, once I gave Lisa's nurse the update, she told me we needed to bring Lisa into ER to get her evaluated for dehydration.  It was nearly 5:00 when we got the news.   I'm pretty sick of being at the hospital, and while Mike is to, he gallantly sucked it up and brought her in around 6:00 pm.  I took the opportunity to get out of the house for a bit and ran some errands with the other kids.

Mike kept me posted via text.  At 8:15 pm, he wrote, "In ER, IV started, doc thinks it's what we thought...dehydration...might be admitted though.  We'll see."  One hour later he texted, "and we're staying. Labs came back and indicated she lost "a lot"of fluid...they are getting room ready"  A lot of fluid translated to 4lbs in 4 days...that's a lot for a kid who only weighs 45 lbs!

I came up to the ER at 10:30 so Mike could go home and go into the office today.  We were finally moved into our room around 11:30.  Lisa seemed a little perkier, but then her diarrhea took over.  Seems like whatever fluid they are pumping in, poor girl is pumping out....I changed at least 6 diapers in under 2.5 hours.  Most of the night involved an hourly diaper change.  She is awake this morning, but very uncomfortable and is whimpering quite a bit.

I'm waiting for the doc to make rounds.  While I was anxious to get her released this weekend, I'm very reluctant to let them send her home too quickly now.   Until they can get her stomach under control, I don't think we can take her home.  She is drinking a bit and ate a pretzel last night, but it is not enough to sustain her and while stopping hydration might help stop other things, it will only most likely causes her to be dehydrated again.  Hopefully the doctor will have some suggestions of how to get her back on track and get her bowels and cough (which we found out is RVS) under control.

Quick update....doc says some of diarrhea could be side effect of the chemo.  While normally not an issue for Lisa, combine it with what was most likely flu in the beginning he thinks the combination of everything going on is just taking its toll.  They are adjusting her fluids and potassium to keep her on the upswing.  She has been up now for a few hours watching tv, eating pretzels (yeah!) and offering up  few smiles now and then.  Once her pain meds kicked in for her leg pains, she actually told me I was pretty as a princess;)  Wonder what she wants?

Thanks for reading and praying!

Tuesday, February 8, 2011

Tuesday Evening Update

Mike here: We decided to take Lisa to the ER this afternoon. She just wasn't getting any better. ER doctors pretty much confirmed what we were thinking which was that she had gotten pretty dehydrated throughout the weekend. The chemo, maybe a dose of the flu, and RSV took a toll. We expect she'll be back to herself after hydrating here for a day or so. She's starting to act a little better already and it's about 10:20 PM.

Princess Lisa is Still Sick

 Lisa has not eaten since last Thursday.  She has been throwing up almost every day since and in the last two days has been having diarrhea.  We have force fed her maybe a handful of food over the past 4 days and she continues to drink water.  Besides the stomach problems, she still has aches, pains and a horrific cough.  It reminds me of the cough she had pre-cancer that never seemed to go away despite numerous trips to the doctor, lots of different meds and breathing treatments.  Docs finally labeled it as chronic asthma because they didn't know what else to call it.  When she was diagnosed with cancer, the cough disappeared and became a non-issue.  Mike and I joke that maybe her cancer is gone and the asthma is back.  That would be awesome! 

Her aches have kept her bedridden for most of the past 4 days.  Once in a while she wanders down to the living room where she will  lay on the couch until she regains some strength to go back up the stairs to bed..  Every once in a while, she leaves the room just to lay on the floor in the bathroom or hallway.  Not sure what that's all about...she says it's cozy.

I'm very anxious and my mind is in a constant whirl wondering if this is the beginning of the end.  I've heard the stories from other cancer mom's whose kids have died.  Lots of times it wasn't the cancer that did them was pneumonia, infection,  flu bug...something their weak, compromised immune system didn't have the strength to fight off.   So, I sit here immobilized by fear looking for any sign she's getting better and putting off  calling the doctor.  I'm not sure what they can do for her that is different then what we are doing at home.  At the hospital, she misses her siblings, we don't have the comforts of home, she is exposed to many other germs, we have to wait to get her meds that we have readily available at home, and there are the mandatory vital checks that wake her up.  It sounds weak, I know.  I guess I'm scared of what they might find or say and know that I'm not ready to hear some of it.  I'm not ready to let her go or give up. 

So, I sit here and watch the clock.  Noon is my cutoff time.  If she's not eating and perking up by then, I have promised myself I will call the doctor and apprise them of the situation.  Really hoping she does better in the next hour and already questioning whether one slice of cucumber counts as eating and gets me off the hook for making a call at noon.

As always, please pray!!

Saturday, February 5, 2011

They are home!

Linda and Lisa came home today. Most likely just a flew bug. We are keeping a close eye in Lisa.

Thanks for the prayers, keep them coming.

Friday, February 4, 2011

And, we're getting a room

After spending 5 hours in ER where Lisa spent most of her time sleeping while they ran fluids and checked her blood counts the ER doctor strongly recommended she be admitted. I advocated against it reasoning that her blood counts were good and we would get better rest at home and wouldn't be interrupted ever hour for blood pressure and temp numbers. After 45 minutes of talking with various nurses, docs and Mike the ER doctor agreed to discharge her and send her up to the 7th floor for chemo. They could then make a decision regarding her staying or going home.

As luck would have it, we got one of the nurses we knew from our past stays. As I was pleading my case, Lisa threw up, her nose started to bleed and she stated she wanted to stay at the hospital. The nurse looked at me and I succumbed. Lisa had spoken.

We finally got into our room around 8:00 and Lisa continues to rest. Any time we move her she throws up. Her temp is staying at 100.4 so we need to keep a close eye on her. Hopefully she will bounce back quickly and this is just a bug and not a sign of things to come.

Have a restful night and keep sending prayers.

Extra prayer needed....Lisa spiked a fever and may need to be admitted

I guess cancer is a little bit like the mailman....neither wind, nor rain, nor sleet, nor snow can stop chemo.  Wednesday when most people enjoyed a snow day thanks to the weather, Mike and Lisa had to head to the hospital for chemo.

She seemed to be handling the chemo well, but had started getting a cold earlier in the week.  That has now morphed into flu like symptoms with vomiting, aches, pains, cough and high fever.   Unlike other kids fighting the flu we can't just keep her home in bed.  As soon as her temp spikes, we have to bring her to the ER to get her examined.  It most likely means an overnight stay at Mott's 7th Floor.   I'm still hoping they will release her, but as the hours tick by, it's not looking promising.  So while neither wind, nor rain, nor sleet, nor snow stopped her chemo this week, a flu bug may delay it.  Total bummer.

I so miss the days when giving Tylenol, liquids and bed rest on a frequent basis was how we dealt with a bug.  Send up an extra prayer that Lisa fights this and is able to regain her strength and ability to beat cancer.

EEK!  After I posted this message, I stepped out in the hall to get a drink.  There are kids EVERYWHERE in chairs and stretchers...looks like the bubonic plaque.  I back in the room with Lisa where she is sleeping peacefully and I'm sealing up the door!!!

Tuesday, February 1, 2011

Chemo Week again

How time flies.  Lisa is already back in for chemo this week.  After this round, Lisa will have scans done the week of Feb 14 to see if cancer is responding to the regime.  I hope and pray it is, because if it isn't, our options are very limited.

On a good note, we all had a wonderful weekend.  All the kids went to Special Days camp Fri, Sat, and Sunday.  They loved it and all came home tired but full of stories about what they did.  The only complaint they had was it was too short.  Maranda was glum all day yesterday and kept repeating how much she missed camp.....go figure, the kid that used to be terrified to go to camp and would get homesick is now "campsick".  Everyone but Lisa is already counting the days until summer camp which is for a whole week.  Lisa  says she doesn't want to go for that long and was upset that her counselors kept bugging her about going;)

As for Mike and I we want to shout out a huge THANK YOU  to CHEF JOHN at MotorCity casino.   Chef John, Don and their boss LUCIO provided all of our food for our Blast Fundraiser last June.  They were integral to its success and once it was over, they invited us to visit them at the Casino.  Seven months later, with the kids away at camp, we called  Chef John and let him know we were going to be at the Casino.  Chef John immediately set about making arrangements for a room for us and worked with Lucio to get us into the 4 star restaurant Iridescence.  Chef John instructed us to park in valet and call him when we arrived.  He met us at the valet, guided us to the front desk, got us checked-in and made sure we had everything we needed.  The room was beautiful and we went off to the casino to play the machines for a few hours.  Our dining experience was fantastic and we were flattered that Lucio made the time to come check on us and say hello.  Even Don found the time to come up and say hello.  It was wonderful...everything...the room, the food, the casino.  Even though we were still close to home, it the perfect escape for the weekend.  I cannot stop smiling when I think how Chef John and his associates went out of their way to provide us a little Rest and Relaxation...people I didn't even know a year ago being so generous and is these acts of kindness that make our world a better place and help us to tolerate such a difficult situation.

So, again, thank you, thank you, thank you to Chef John.   For a short period, we were carefree and worry free and able to have a wonderful time.  We couldn't have done it without you!

As always, thank you to all of our readers whose comments, post and prayers keep us going and help us to find the good in life.

Keep praying and living life fully!