Sunday, April 28, 2013

A force to be reckoned with

Sorry to have left all you blog readers hanging.  I've taken my normal road of denial and avoidance in the hopes that if I don't think about cancer, treatments, the "d" word or anything else attributed to Lisa's health then nothing will happen and life will remain status quo.

Hahahahahahahahaha.  It has been 10 days since Lisa was released from hospital.  While I've been avoiding reality, Mike has been posting tidbits on FaceBook and keeping a positive outlook.  My teenagers have been continuing to live life.  I, meanwhile, have been vacillating between screaming at God, throwing in the towel, madly searching the Internet for answers, and just pulling the covers up over my head and hiding from the world.

The past ten days have been comprised mostly of pain meds and sleep for Lisa with a few transfusions at the hospital, some short outings to parties, church and McDonald's trip rounding out the time.  She averages about 2 hours of awake time a day.  Her counts have been low so no treatment has been pursued and the solution has been to up the pain meds which I think makes her sleep more.

While I would never deny Lisa comfort or allow her to be in pain, I am struggling with accepting that our only option right now is to keep upping the dosage on her pain medications.   I struggle because I really believe that her "every third week chemo" is key to keeping her cancer and pain at bay.  She would get chemo and for two weeks after require little break-thru pain medication.  As the third week would go by, her need for pain meds would increase, but the next cycle of chemo in the fourth week would bring everything back to her "normal".  I struggle because this approach of just giving her pain meds makes me feel like we are really not giving her a fighting chance.  For every day that goes by, every pain med she takes, and every hour that she is now sleeping I just visualize that cancer growing and entangling itself in more and more parts of her body. Rooting itself so firmly that by the time we come up with a possible protocol to try it will be too late.  There will not be any way to tackle all the areas that neuroblastoma has claimed.

I struggle watching her sleep most of her day away only waking at most for an hour at a time once or twice a day.  I struggle with wondering how long she can hang on, how long we can all rally, how in this day and age with all our science and technology there is not a better answer than "more" pain meds.  I struggle with figuring out how much I should continue to fight and look for answers.  I struggle with being told this is the end.

I struggle because I've never been one to follow the popular vote or go with the "in"crowd. Telling me something can't be done only makes me want to prove it can.  So, with that, I try to infuse sheer willpower (ok stubborness) into Lisa with the hopes she can prove doctors and science wrong...again.

Honestly, I don't know whom I kidding...Lisa is a force of her own. A force that pops out of bed one day last week and goes for a few hours to her friend's birthday party, a force that sleeps most of the day except for lunch hour when she convinces her caretaker that a trip to McDonald's is what she needs, a force that sleeps thru church but then wants to go to a restaurant for breakfast. A force that given a little help from her friend chemo will show cancer that she is a force to be reckoned with.

As I said at the beginning of this post...I'm in denial, I'm in avoidance mode and I'm struggling.  But, I am still looking, hoping and believing.  My kids know that I am a "mommy lion" and that I have their back and will protect them in any way I know how.  Lisa knows it too, and when she told me this morning in her sleepy voice that she wants to live, that she wants to beat cancer, she knew mommy lion would pounce....and I did, I've hit up the internet, sent out a few inquiries to some doctors about possible next steps, and I've updated the blog, and I continue to rack my brain for what else I can do as I sit as close as possible to Lisa while she sleeps. 

 Please continue to pray and live life fully.

Wednesday, April 17, 2013

Lisa is home:)

Thank you for all your prayers, words of support and acts of kindness.  Lisa, once again, is home.

To her medical team's surprise, she was up and doing crafts and playing in the child life room for most of the morning yesterday as we waited to be discharged.  One more little miracle received.  We will take it. 

Lisa is quite the trooper and while she has made it home once again and won the fight...the battle still continues.  We do not have a clear answer on what we will be doing next.  Staying on top of the pain meds is a given and there is a possibility of more chemo in the future.  We are taking the rest of this week to all try and get back "in the groove" and see how Lisa does now that she is at home.  Discussions regarding possible treatments will resume on Monday.

Please continue to pray for Lisa and to thank God for the blessings and miracle of allowing us to bring her home pain free, filled with smiles, giggles, laughs and feeding numerous new babydolls!

For those of you joining us in the novena, we still have three days left. 

Novena to St. Therese, the Little Flower for the Healing of Lisa McMaster
April 11-19 at 3 pm
God our Father, through St. Therese of the Child Jesus, the Little Flower, You remind us of Your merciful love and of the childlike trust we should have in You. We thank You for giving her the grace to draw daily to You countless souls who will praise You eternally.
Saint Therese, remember your promise to do good on earth and obtain for us from God the favors we hope for from His infinite goodness. We especially pray for the physical healing of Lisa McMaster, wisdom for her doctors and nurses, and peace for those that love her. Amen.
St. Therese of the Child Jesus and the Holy Face, pray for us.
Bridget the Brave, pray for your friend Lisa.

Monday, April 15, 2013

Visiting Day, Next Steps, and Miracles

Mike at the keyboard tonight.

Lisa had a steady stream of visitors on Sunday, fifteen in all.  She needed some time to adjust to the commotion each time but eventually she woke and laughed and played and chatted.  In the evening we had a little trouble with her port because it began leaking.  We were able to get it accessed again at about 10:00 PM after a few tries.  Nurse Stephanie did a happy dance and Lisa celebrated with a Fruit Rollup. All told she was disconnected for about 2 hours.  Fortunately she is almost entirely on oral medication now with the only exceptions being IV hydration and the PCA, the on demand morphine.  So she didn’t get behind on any of her medication and her pain seemed to be under control the whole time.

I met with Lisa’s primary oncologist today and spoke about what options are available.  Scientifically we are out of viable healing options.  The disease is progressing in all affected areas and spreading to new ones even with the chemo that she has been receiving these past few months.  The IV chemo simply isn’t working to eliminate, stop, or slow the cancer any longer and the side effects too toxic to continue.  The plan is to continue with an oral chemo that we hope will slow the disease progression and offer some relief from pain.  Additionally, steroids and pain killers will be administered and monitored by palliative care via hospice when she comes home.

Home.  We hope to have Lisa home by Tuesday.  That’s about as far forward as I can think at the moment.  I have to force myself to remember that each day is a blessing. Each day with any one of my kids. There are going to be some good days ahead and I try to focus on that.  There are a lot of good days ahead. 
As I said, scientifically we are out of options but I’ve also seen and felt what can be done by way of prayer and meditation and mutual appeal.  It’s not too much to ask for that super miracle we’ve been asking for. We’ve all experienced them. We’ve all read about them.  Why not Lisa?

Friday, April 12, 2013

I want....

"Momma:)" was the word I was greeted with last night when I returned to the hospital.  Music to my ears.  That was quickly followed by a request to go look for something to eat. The request was even sweeter when Lisa made it clear that she wanted to come with me to check out the nutrition rooms.  She got out of bed and we walked the hall for a good 15 minutes checking things out. Big grin:)

This morning I was greeted with "I want, I want, I want".  She requested cocoa puffs, fruit snacks, a specific backpack/animal that required a trip to the gift shop, a big breakfast, to watch tv, to sit in the chair, to play with her make-up, to kiss her bunny, to hold her babies.  With the ability to hit her pain pump anytime she needed, she was able to stay up for a good two hours before she crawled back in bed. 

Unfortunately the thought that there was a special toy of some sort waiting for her in the gift shop kept her from falling into a deep sleep. She rested for a bit, but was fussy.  When I asked her if she had pain in her legs or head, she said no, she just really wanted to go to the gift shop.  I put her off for a while more.  By the time Grandma arrived at 11, Lisa was agitated and she said the only thing that was going to make her feel better was a trip to the gift shop.  Grandma and I finally caved and agreed to take her down. Lisa insisted on walking the whole way!  She scoped out the various choices in the gift shop, selected a $50+ bear and hugged it tightly as Grandma paid for it.  She led us back to her room taking the long way so that she could show Grandma the fairy door located on the main floor of the hospital.

We returned to her room and some friends stopped in for a visit.  They chatted for a bit, shared a prayer with us and were getting ready to leave when Mike joined us.  Lisa was happy to see her Daddy but her energy was fading fast.  That was a bit unfortunate because this afternoon was a special one for her.  Father Ron from our parish came and said mass and administered to Lisa her First Holy communion and the Sacrament of the sick.  Lisa, of course, had other ideas and when the time came to take communion she refused.  Father handled it all in stride and allowed us to hold onto the host until she was ready a few hours later.   Lisa spent the rest of the day napping and asking for food.  She had some real good moments and some real "don't bother me" moments especially when it was staff waking her up for one thing or another.

As usual, Lisa is playing by her own rules.  Our nurses, docs, pain team and palliative care all have been pleasantly shocked by the little girl they are seeing today vs 3 days ago.  We are still trying to figure out what to do moving forward.

Please continue to pray.

ummmmm...this says it all

Thursday, April 11, 2013

Check this OUT!! Mike came back to this after lunch with Grandma:)

While Dad and Grandma were at lunch, Lisa paged her nurse and asked to sit in the chair:)

Please Pray this Novena with us

For those of you familiar with the movie Bruce Almighty, I think I'm pretty much channeling Bruce as he tells God what he really thinks.  God's reply was as follows:

God: This last entry was disturbing; "The gloves are off, God." "God has taken my bird and my bush." "God is a mean kid with a magnifying glass." "Smite me, O mighty smiter!" Now, I'm not much for blaspheming, but that last one made me laugh.

So because of my current tirade with God, I've reached out to Bridget the Brave's mom and asked that she provide a novena that all of readers could join us in praying.  Louise responded "So many good saints to choose from. I kept coming back to the little flower, Bridget's patron and one of both of our favorites. She promised to spend her time in Heaven doing good on Earth. She suffered great physical pain in her young life."

I told her St Therese the Little Flower was perfect! Therese is my confirmation saint and Maranda's middle name. I love St. Therese and she has been there for me before in times of need.  Funny thing is, in the past few days I've been pleading with many of the saints and I don't think I've remembered to call on her! I am still praying for the miracle of curing Lisa but will settle for bringing her back to the way she was....controlled pain, able to move around, walk, talk, laugh, giggle, eat, having good days while living with cancer....I know that is asking a lot and there are so many things that could go wrong and inevitably we will end up facing this "last chapter" again.  But, I don't care.  As I've told the O mighty smiter, Lisa brings more good to this world being here on earth, and yes, I'm selfish and want to keep her with us.

So, we will be saying a Novena to St. Therese, the Little Flower for the Healing for the next nine days.  We ask that everyone spread the word and for the next nine days at 3 pm say the following prayer for Lisa’s healing.

Novena to St. Therese, the Little Flower for the Healing of Lisa McMaster
April 11-19 at 3 pm
God our Father, through St. Therese of the Child Jesus, the Little Flower, You remind us of Your merciful love and of the childlike trust we should have in You. We thank You for giving her the grace to draw daily to You countless souls who will praise You eternally.
Saint Therese, remember your promise to do good on earth and obtain for us from God the favors we hope for from His infinite goodness. We especially pray for the physical healing of Lisa McMaster, wisdom for her doctors and nurses, and peace for those that love her. Amen.
St. Therese of the Child Jesus and the Holy Face, pray for us.
Bridget the Brave, pray for your friend Lisa.

PS...for those of you who aren't aware, a novena is 9 days of focused prayer to God which is based on the biblical 9 days that Mary and the apostles awaited the coming of the Holy Spirit after the Lord’s resurrection. Many novenas invite a specific saint to pray for a request. We believe that those in Heaven continue to bless us with their prayers for our well being.  Novenas are not magic. They are a way of uniting our prayers in an organized fashion with the understanding that the Lord said “Ask and you shall receive, seek and you shall find, knock and the door will be opened to you.”

For those who do not feel comfortable saying this type of prayer, we invite you to join us in prayer these nine days in whatever way you prefer.

If you are unable to start the novena today, just start when you can and pray the novena for 9 days.

Wednesday, April 10, 2013

Look for the BEAUTY in each day

It wasn't too hard to find the beauty today...Maranda got her braces off and that gave us all something to smile about:)

Live LIFE what is worse? 

Having to stand by your cancer warrior's bedside and see her laying still, eyes closed, pain meds pumping, body ravaged with scars and bruising while doctors, nurses, priests all check in on her (and you) to try and figure out exactly where she is on the "timeline of her life".

Or, having to sit in a room with your husband and then your teens and talk about when, not if, the final chapter of life plays out should it be in your home, the hospital or hospice?  I suppose it should make me feel better that the palliative care docs start out by telling us that years ago many children died young from cancers and heart disease because we didn't have the meds, technology, drugs, etc. to keep them alive.  I suppose I should take comfort in knowing that among us walk adults who somehow survived the death of a sibling way back when. I suppose it should make me feel better that the the team tells me I have wonderful, loving, caring teens and we are a great family.  I suppose I should take comfort that all this is preparing us for the inevitable, but honestly this is not a conversation I think anyone should ever have to be part of least of all my teenagers.

So, where am I at? How am I doing?  As I tell our medical team, I'm still toeing the line.  I'm still not sure which way this is going to play out.  I know we've been here before and some of those times it has been much worse.   I find myself "hoping" instead of "BELIEVING".

As my brain shifts and filters and processes I find myself asking why I hope instead of BELIEVE?  I guess there is some part of me that is doubting Lisa can walk out of there because of the 3 strikes your out mentality. Honestly, how many times can you expect to cheat death and outlive science?  How many times do you rally only to end up back in this same spot facing the same discussions and decisions?  How much pain can one little body endure?  How much do you push to get her up and moving if inevitably she is going to die of this blasted neuroblastoma?

And there it is...inevitably....the word that right now sparks a little fire in my brain.  It is inevitable that we will all die.  So, should we just off ourselves now because sooner or later we are going to die and might as well take the short road?  Of course not.  We live.  We wake up every morning and face our day, good or bad, and seek to LIVE life. We live by feeling, doing, and being with others and making our mark on the world.  If that living can only be done in small increments every day, do you still fight for those moments?  If those moments are pain free, filled with smiles, giggles, laughs and feeding your babydoll, yes, you fight.  Do you BELIEVE?  You do and you make every moment count. 

Tuesday, April 9, 2013

Pain Continues

Thank you to all who are reading, posting and praying.  Your words bring comfort and strength.

Lisa continues to be in pain. The plan right now is to get her comfortable.  To do this we are upping pain killers, changing from oral to IV meds, adding a new one here and there whatever it takes to relieve her pain.  She is sleeping most of the time (or at least appears to be but I suspect she is just using this as her defense mechanism so she doesn't have to talk to anyone). 

She continues to throw up every so often.  We think this is from disease activity and pressure in the head.  It's awful to watch.  She has a hard time sitting up because of the all-over pain she is feeling.  Having her raise her head seems to make her more nauseous.  This creates quite the challenge when she gets sick because we have to manipulate her to sitting and somehow figure out how to support her head so she doesn't choke. (I can only imagine what pain she is really having.....most likely along the lines of a monster migraine (or a huge hangover) where you just want dark, silence and to lay very still)

She has not had a fever since she has been admitted and her cough has subsided. All indicators that this is cancer at work, not an infection or a virus:(  (oops change that, nurse just took her temp and she is at 100.4 which is enough to have to notify docs)

I cannot bring myself to post a picture of her for all of you because this is not the Lisa you want to think about.

So instead, I am posting a card one of her classmates made her. 

Please keep praying.

Monday, April 8, 2013

The Talk:(

After a night in the ER because of unstable blood pressure, Lisa was finally moved to the floor today at 9 am.  Mike reports that one of our head docs stopped by at 12:00 and had “the talk”.  The scans DO indicate disease progression in the head and multiple other sites.  Palliative Care will be by later to talk, and our other doctore will be there late tonight to talk to us. 
Hate this.....praying and hoping Lisa can one again disprove science and walk the hell out of there and prove the might of prayers and small miracles.
Live Life Fully
Stay the course
Tenacity, never Quit

Sunday, April 7, 2013

Please Pray...Lisa not doing well

It has been a long time since I have written a post. Mike has made the most recent ones.  I find myself deplete of thought and emotion, grasping at straws and living in denial.  Today reality has given me a cold slap across the face.

Our Easter celebration last week was status quo (except I forgot to take pictures like I normally do).  Lisa woke everyone up by 7:30 and all the eggs and baskets were found by 9:30 wtih plenty of time to get to Mass.  We went to my dad's place after for a huuuuuggggggeeeee brunch and enjoyed watching the basketball game with him in the afternoon while Lisa curled up in his bed for her normal nap.

Mike took Lisa up to Grandma Mc's on Monday and they were there the entire week.  I worked while Maranda enjoyed her break hanging out with friends.  Tommy and Chrissy who neglected to turn in their schoolwork before break spent their time spring cleaning the house as a consequence for their grades. The week went by fairly quickly.  I got a little weekend time to myself when Aunt Sharon picked up the teens and took them up to Grandma's.

Hearing the sound of Lisa's voice as she came thru the door today brought a huge smile to my face.  As I got my hug, my heart dropped.  She didn't look so good to me. She looked like she had gained more weight, she had dark rings under her eyes, and she had a cough that sound pretty bronchial. Mike said that she had frequent complaints of headaches and had been taking break-thru pain meds once a day.  As we got ready for church her complaints vacillated from headache to leg pain to nausea.  She was willing to go to church but it was a bit of a struggle for her.  While normally she just lays down for the whole mass, today she needed to leave twice because she felt like throwing up.

Being the trooper that she is, she willingly agreed to go to breakfast with everyone to celebrate our special family day.  It was 5 years ago that Tommy, Chrissy, and Lisa legally changed their last names to McMaster and we became a forever family.  Lisa ate a little bit at the restaurant and we got home at about 3.  I noticed that now it looked like she had a "black" eye.  A wave of nauseau washed over me....this is not good. Often times "raccoon eyes" is one of the tell-tale signs for diagnosing neuroblastoma. I've always been grateful that Lisa has never had this symptom as it is not pretty to look at and most likely means there is cancer activity in the brain.

She slept the afternoon away and came down for dinner and to play a board game.  Now, both of her eyes were looking a little black/blue...booooo!!!  After an hour of being up, she ended the board game and headed back to bed with leg pain and nausea.   Shortly after she threw up and her temp was at 100.1.  About 20 minutes later she threw up again.  Mike and I gave each other a knowing look. At the hour mark, I took her temp again 100.3.  We know where this is going, no question given how she has been looking all day.  We got calendars out and schedules squared away for the teens, made phone calls for back up drivers, and did a 11:00 temp check.  101.1.  Go time.  Bags packed, hospital called, Lisa moved from the bed, Lisa throws up,  Lisa and Mike get in the car...on the road by 11:20 pm.

Please pray. I've been having panic attacks all day anticipating this.  The warnings and words of the doctors spinning thru my head....."you know where this is going to end up, you know what the end result is going to be".  I may "know" but I'm still not ready.  I love that girl more than anything and think she does more good on earth then in heaven.  We need another miracle...we need her to get better.  Hoping that this is just a virus and that antibotics take care of it...hoping doctors are wrong....hoping there are many more Lisa's life.  Hoping for a miracle. Please pray.