Congratulations Thomas and Christina:)

Thomas and Christina made their Confirmation on Tuesday! 

We are going to try and triple the excitement with another Catholic celebration this Sunday.  Lisa will be making her "second" First Communion.  This time she will be wearing the white dress and hopefully be awake to receive communion from the priest:)

We will be attending the 10:30 mass at St John Neumann and have a small celebration for Thomas, Christina and Lisa aftewards. If you would like to join us at either the mass or the celebration, please RSVP with a headcount by clicking the link below:

RSVP: Yes I will attend Lisa's First Communion:)

Thanks!

Keep praying and live life fully:)

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.

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.

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?

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

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:)

KEEP PRAYING PEOPLE...THAT IS MY LITTLE GIRL:)