Happy Halloween

Chrissy, the eskimo, Thomas, the black reaper, Maranda, the baby, Lisa, the mouse

Happy Halloween....hope everyone got lots of goodies!  Lisa sure did.  As usual, she digs down and finds her super energy to hit all the houses with lights on from 6;30 - 8:00.  She went as a mouse this year, but perhaps an energizer bunny costume is in her future!

She certainly is an inspiration.  She just has so much energy and love of life.  Radiation doctor said that Friday will be her last session.  We're not quite sure what happened to her needing it for 6 weeks so I will be following up with her primary oncologist soon.  While her head pain is much less, she still complains a bit about it, as well as, leg pains pretty frequently.  If she is done with radiation then we will have to push for them to start chemo drugs again. Sadly, this is not a cancer that can currently be cured; it is one that keeps us on our toes looking and praying for ways to get the most time with this wonderful child.

Have a great night!  Keep the faith and live every day to the fullest:)

Loving Life

Lisa is feeling much better.  She started radiation last week and continued this week.  She is feeling so much better that she actually went to school for an hour yesterday.  You go girl!

She spent the weekend loving life and with her loved ones this weekend:

Ice Cream...that's what she wanted for breakfast!

Enjoy Sunday weather on the lake before we put boat away for the year.

Grandma Y and Lisa



Bald is beautiful





Plane ride up to see Grandma Mac

She is home!!

Wow...I cannot believe all that has transpired in under a week. 

Lisa seems to be feeling a lot better.  She came home last night and was up and talking and playing for HOURS!  Last Sunday and Monday, I think she averaged one hour of awake time for the whole day.  She is feisty and teasing Mike and I every chance she gets.

Mike has been wonderful!!! Lisa kicked him out of his spot in the bed last night and he still came up to check her pump 3 times in the middle of the night while I just lay there sleeping.

Uncle Al is taking the older kids up North to see Grandma Mac this morning which means Mike and I won't be outnumbered and we can relax a bit.  Lisa made sure each of her sibs lavished her with hugs and love.  Chrissy apparently was the last one and Lisa told her "hey, you walked right by me...aren't you going to give me my hug?!"

A big thanks goes out to the "Rainbow Lady" and Central Middle school.  Rainbow Lady sent over a hand made quilt for Lisa and it was waiting for her when she got home.  Later in the evening last night, one of the teachers from CMS stopped by our house to deliver an envelope of gift cards.  

These gifts and the support and prayers we get from our readers, our family and friends, our community are what help us to stay strong and know we are not alone.  We all know it takes a village to raise a child....and YOU are our village.

Thank You so much!   Today is a gorgeous fall day in Michigan...make the most of it.  Go out and life life to the fullest!

WOW---Please Pray---FOR THANKS!!!

Thank you to all of our followers who have offered up prayer and support.  Neurosurgeon saw Lisa this morning and told Mike she will most likely go home TODAY!!!!!   While the docs are good, and Lisa a fighter, this does seem to be God's way of reminding us that HE is GREAT!!!
((I am so happy...crap...now I cry!!!! Really...a whole 10 minutes of tears in the last week and now the floodgates open....seriously...get a grip woman:))
Reports from Matt, aka "the Godfather" and Mike say that Lisa did really well yesterday.  She had her "mask" made for radiology at 7am and was a champ about it.  Later, she got her first dose of radiation and had no problems.  When she called me last night at 10:30pm, her perky little voice said "Hi Mommy"  (more tears) and when I asked her about the mask and radiation...she said "I just slept thru it:)"

Plan is that she will get radiation today and then M-F for the next 6 weeks.  My guess is that she will get her dose today and then be discharged.  Fingers crossed. Knowing that she had brain surgery on Wed and they are considering letting her go home today....wow!!

Special kudos goes out to PCEP.  With 6000 plus students they are still able to hit home on a personal level.  I got a call from the Canton HS Asst Principal yesterday.    He was calling to let us know that one of Maranda's teachers had sent him information regarding Lisa and that the school was thinking of us and was available to help and provide services in any way they could.

I was also touched when our priest from St John Neumann sent me an email saying  that he had heard "the latest going on with Lisa, know that my prayers and all of St. John Neumann are with Lisa and the entire family, PLEASE let me know if there is anything else from you need I will drop anything"

Got to thank the Godfather for taking off work to be with us on Wednesday and staying with Lisa on Thursday so Mike and I could work.  Sam and Maureen who joined us at the hospital to help us pass the time on Wednesday get a big warm HUG along with:  Lisa G.  who dropped what she was doing to run to the store and get groceries we needed;  Kim, Chrissy's GS leader, who sent an email with a plan of action to get her to the play last night; Laura who along with many others got my frantic text and was first to respond saying she could take the kids overnight Tues;  Mary and Alan who also keep track of our kids so they get where they need to be.  I'm sure I'm forgetting someone....sorry if it's you.  I'm just so thankful right now!  My mind is a whir.  People always say that they couldn't do what we do...well, yes you could. Some of you are already doing it WITH us, and all of us would do what we have to do.  That being said, I wish this on NO ONE and ask God to bless each and every one of you.

Please send up a special prayer of thanks to God.  We've been keeping Him pretty busy and He has granted us more time with Lisa.  Healthy, feel good time.  How much time, I don't know, but  as someone reminded me, none of us have our date of expiration stamped on our foot.  Nobody really knows how much time they have.  Lisa is a fighter and none of us are ready to give up!

Have a GREAT day and remember to live each moment to the fullest:)

Safe and Sound---Yeah!

Lisa is out of surgery and is safe and sound.  She looks really good and seems comfortable.  Once the anesthesia wore off she started eating sour patch worms, compliments of Aunt Sam, and potato chips compliments of her nurse.  She may not be nauseous, but I am!

Prior to surgery, she requested that per tradition, Uncle Matt shave her head.  Here are some pics:

Neurologist just stopped in and took a look at Lisa and said she said is doing better than any patients he has done this surgery on especially considering what he saw on the scans....you go girl!!! Yeah

THANK YOU THANK YOU THANK YOU FOR ALL THE WELL WISHES AND PRAYERS!!

We'll take option 2

So after looking closer at additional scans and talking to all the doc teams we've decided that best place of action would be to drain the fluid using an endoscopic third ventriculostomy procedure which involves creating an opening in the third ventricle so that the fluid will hopefully be redirected thru that and then absorbed by the body and relieve the pressure in her brain.  They are also putting in a rickam reservoir which is similar to a port where additional fluid can collect and can be easily drained if needed. This will be another magic "button" in Lisa's body.

Because of her being a chemo kid this was the least intrusive, least exposure to infection than option 3.  Option 1 was ruled out, well, because we just aren't ready to go there yet.  We've got a fighter and we are ready to fight.  She was taken into surgery at about 12:30 and should be out by 3:30.  Mike and I are feeling pretty good about things and are sitting in the cafeteria with Mike's sister, Maureen, my sister, Sam, and the "godfather" Matt.

It just seems like everything is going to be fine. How can it not be?  Lisa is such a good kid, I can't fathom her leaving us now or anytime soon.  Sadly, though, the leaving is what is the unsaid message.  Time is of the essence...docs are encouraging us to make the most of the time because it's running out.  That's what they say....which of course, we could say that about any of our lives....so we are hopeful that Lisa sails out of this and continues to beat the odds.  We know she has done it before, and really how do the docs know when any of our time is up?

To do or not to do--brain surgery

thank you to all who have responded to the post requesting prayers..keep it coming

it is nearly 8 pm and Lisa, Mike and I are here waiting for a room in the Intensive Care unit so we can begin getting her ready for next steps

Docs have given us three choices to treat the cyst/neuroblastoma tumor in her brain:

1) Do nothing except provide stronger meds which will help control the pain and most likely would have her sleeping for most of her days

2) Do surgery and place a shunt in her brain followed by rounds of radiation.  The shunt would divert the fluid and hopefully relieve pressure so that she can function "almost" normally.  There is some concern re:placement and size of tumor that leaving it could cause her to have some issues with balance, emotions, etc.

3) Do brain surgery followed by radiation.  The brain surgery would involve removing as much of the primary tumor as possible.  Because of the stage of her disease, this is not even considered a cure.  It's considered palliative care because there are so many other sites where the cancer is present.

While number 1 seems a terrible choice, part of me wonders if perhaps it makes sense.  Given the nature of neuroblastoma, are we just putting off the inevitable?  How much more can Lisa really endure?  Is this a chance to let her go with less trauma to her body?

Number 2 and Number 3 both have pros and cons. We need more info to make best decision.  Some of that info should come once we get an MRI done and can determine if the cancer has spread to her spine, as well as, her brain. Also, we need to hear from the surgeons, oncologist and radiologist what the quality of life, timeline and risks are most likely to be for all the options.

Please, please, continue to pray and even beg for a miracle.

Thru most of the day, Lisa has slept.  The time she is awake she seems comfortable and still manages to smile and tease.  She really is a fighter.

A big kudos to all the docs and nurses.  All the different teams have done a great job of checking in, sharing information and working as a team. Send extra prayers for all of our doctors that they are able to use their knowledge, skills and have steady hands in helping Lisa.