Monday, October 31, 2011

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:)

Wednesday, October 26, 2011

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

Saturday, October 22, 2011

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!

Friday, October 21, 2011

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 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!!

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:)

Wednesday, October 19, 2011

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 go girl!!! Yeah


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 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 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?

Tuesday, October 18, 2011

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.

eek!! omg!! PRAY, PRAY, PRAY

After watching Lisa alternate between sleeping and suffering with severe head pain and occasionally throwing up yesterday evening and night, I couldn't take it anymore.  I had arranged to work from home today and after an email an phone call to our nurse decided best course of action to take is bring her to ER.

I got her here at 12:30 and we finally have CT scan results back.  ER doc said premilinary report says:

" there is an area in the back of her brain that has a cyst with something (possibly blood) surrounding it, the cyst could be obstructing and holding cerebral spinal definitely something there, not sure what it is...have contacted neurology to investigate further...technical term hydrocephalus ventricle"

PLEASE SEND UP EXTRA PRAYERS....this doesn't sound good..if suspisions are correct, my quick internet search leads me to believe there will be surgery and a shunt involved in very near future.....please let their be an easy fix so we can get on with living our lives!

Monday, October 17, 2011

Better but not Great

Lisa is home and doing better, but not great.  She still has a lot of headaches that are keeping her down.  Her appetite and energy are low and she is still having occasional nausea.  Her counts are low which means we will be keeping her home from school.  Mike and I are talking with docs to try and get the headaches under control.  We are also trying to figure out how to make an educated decision about whether or not to put her through a second round of this chemo regimen.  The effects have been so bad they have really impacted her quality of life.  If only we knew if the drugs were beating up the cancer as much as they are beating up Lisa.

Praying we get guidance and Lisa bounces back.

Saturday, October 15, 2011

Lisa's Back Home

First words ot of Lisa's mouth today...

Lisa: Today is gonig to be a big day.
Dad: Why?
Lisa: Michigan! Go Blue!

Sorry MSU. We cheer for you in other games,but not against UofM...they have given us a tremendous gift, time.

Yeah!!! We came home last night!

Lisa looked a lot better when I got there on Thursday to take over for Mike.  Friday morning at 9:00, when the doctors rounded our head doc basically said that with her being fever free for past 24 hrs and last two cultures being negative we could go home with an oral antibiotic and fluids and if third culture came back positive or if problems arose, we were only 25 minutes from hospital and we could bring her back.

Okay...apparently our nurse and the new resident need to get out the "frequent flier patient book".  What that meant to me was run the last courses of intravenous antibiotics and get these folks on the road.  At 1:00 when I inquired about discharge, the nurse quoted me the "48 hr and 3 clear cultures" protocol.  Ummmm, I know the protocol, but also know the doc said we could go home and come back if culture is positive, so let's get things moving and get us out of here.  Nurse said she'd ask the doc.  At 3:00, I pushed again.  Nurse quoted protocol.  Really??  Go find the doc, we already picked up the meds he prescribed and he wouldn't have prescribed those for home if we were staying.  At 5:00, I was getting a bit miffed.  Besides the fact that we had been here ALL day, we now had a new roommate who was very medicated and sleepy and snoring VERY loudly.  Lisa kept demanding that I make her get out of OUR room.  I kept explaining it wasn't our room and we had to share.  When our roommate spiked a temperature of 103 and infectious control was brought in, my "aggravated levels" shot thru the roof.  Are you kidding me?  The reason they have Lisa in the hospital is because she has no white blood cells and is at risk for picking up infection.  Now we are sharing a room with a kid they have no idea what is wrong with her and are trying to determine what she may have that is causing her high temps and neck pain!  I told the other patient's nurse to find me our doctor.  She said she would let our nurse know.  Meanwhile an aid came in to check on Lisa and I told her I wanted to see the doc.  Minutes later I had a report from all 3 that doc was on the way.  When our newby resident appeared at 6:00, she was apologetic about being awol for so long and said that our regular doc was gone and that the attending doctor did not want to sign off on discharge papers until the third culture came back sometime after 9:00.   I looked at her and repeated what our regular doc had said that morning, she agreed that is what she understood him to say.  I then told her that she could tell the attending that we were leaving with or without discharge papers.  The resident nodded in agreement and understanding and said she would "quietly" go put thru the paperwork. I started packing up the bags, told the nurse I was taking them out to the car.  She worked with Lisa on disconnecting her from the pumps and doing final flushes and we were out the door by 7:15 and headed home.

Lisa went in the house all smiles and hug, we never got a call about a "positive" culture, and now we are eagerly awaiting the start of the big game in a few hours!  The lesson here...always stay on top of things and be an advocate for your child's health.  You do know them best!

Have a wonderful weekend, live life fully, and of course,  GO BLUE!

Thursday, October 13, 2011

Another night at Motts

Lisa is still in Motts.  Her counts have plummeted to below one meaning she has no way to fight off any infection.  Per protocol, they started running antibiotics yesterday.  She will have to stay on these and most likely will remain inpatient until she is fever free for 48 hours and/or her counts starts to improve.  She looks a lot better than she did last night and is awake and moving around.  She apparently slept most of the day which could explain why she keeps telling me "I can't keep still" as the hour approaches midnight.

I spoke with my manager today and let her know what was going on. She was very gracious and understanding and told me to do what I needed to do. They would work with me and my needs. I assured her that I would not let them down and that they could still depend on me to get the job done.  The ability to work remotely while Lisa is in the hospital has made things much more bearable and doable and I'm not feeling so much mom guilt.  I'm also relieved that Mike will get more of a break and won't keel over from a heart attack!

Thank you to everyone who has answered my calls for help.  I now have a back up schedule in place for when Lisa is at home and many of you have offered to help out with whatever we need.  While it seems like we have things under control right now, you just never know what the future holds, and we may need to take you up on your offers!

Please continue to pray, we are not ready to give in, give up or give Lisa back!

Wednesday, October 12, 2011

Lisa was admitted to hospital tonight

This morning Lisa was very tired and I had a hard time getting her moving.  Once I got her up, she didn't look good and kept laying back down.  I had a bad feeling and started calling around for care.  Luckily, our good friend Bonnie was there to save the day and agreed to watch Lisa.  Just before I packed Lisa in the car, she threw up and walked like she was dizzy. I hurriedly took her temperature, expecting a fever.  It was normal and I took her to Bonnie's and swallowed the guilt of leaving my daughter who was sick with a friend whom I hated to drag into this emotional position.

Mike  picked Lisa up around 3:00 and texted me that she had a sore throat.  I texted him back to keep an eye on her temperature because the chemo she had last week would most likely impact her counts and put her at a bigger risk for fever/infection.  Sure enough at 5:00, her temp spiked.  It came down for a little bit.  I got home from work at 6:30.  Lisa looked like hell. She was so pale and lay prone on the couch.  Mike took her was 101.6.  Mike packed his bag.  Maranda and I traded barf buckets as Lisa began to throw up.  It was so sad. She was so tired, she could barely lift her head.  I was so concerned I was going to drive to the hospital with them, but Lisa's spirit shone thru as she told me she was okay and I could stay home;(

Mike and Lisa headed off to the hospital and the rest of us had a good cry; it's so hard seeing Lisa like this.  Lisa was admitted to the hospital, per protocol...once a chemo kid spikes a temp, they are started on antibiotics and admitted for the night.  It has been very stressful in our household.  I started my new job this week and while I am thoroughly enjoying it, the timing couldn't be worse.  I'm wracked with fear and guilt as Mike juggles his schedule to take care of the household, as well as, be point person for taking Lisa to the hospital.

Please pray that Lisa perks back up and the doctors can help us find a better solution that is not so tough on Lisa's system.  We are not ready for this fight to be over!

Sunday, October 9, 2011

Lisa is home..thanks for all the prayers

Lisa received hydration at the hospital and returned home with Mike and was asking for steak.  Big smile and giggles.  I can rest easy tonight and have great hope that tomorrow will go smoothly.  Thanks for all the prayers...keep them coming!

poor girl

It has been one heck of a week and I am starting to feel the stress.....two lockdowns at Maranda's high school (the student has now turned themself in)....fri night, my uncle, who was at frankenmuth with his entire family, had what could have been a "fatal arrhythmia" (it was thwarted by his daughters who were there at the time he passed out--one called 911, while the other, a nurse, administered CPR---) he is still in the hospital at Saginaw as they try and figure out what happened....and the chemo Lisa has been on has been making her throw up every day with it escalating yesterday when she ended up throwing up almost every 2 hours, sleeping most of the day and not eating or drinking.

For most of the week, Lisa rallied and managed to get up, throw up, go to school for the first part of the day, go to the hospital, throw up, get chemo, take a nap, come home, eat, go to bed and start all over again. 

This is the first time that Mike and I can remember that she has ever cried when throwing up.  She has complained of a lot of head pain and we can't tell if it's the pain making her throw up or the throwing up is causing the pain.  We are working diligently to try and get her meds right to control her symptoms.

We are scheduled tomorrow for blood draw and Mike will be following up with doctor. Being the seasoned chemo parents, we did not like the way Lisa look today so Mike took her to ER for hydration.  We are hoping that perks her up and allows her to come home and start eating.

My new job starts tomorrow and I'm plagued with anxiety.  While one part of me knows this is a great opportunity, my mom side just wants to sit, hold Lisa, and cry.  That being said, I realize that wouldn't really help the situation and that I've pushed all my family, including Lisa, to get up and face each new day and go on with life because it's all we got.  Shouldn't I hold myself to the same standards?  Would staying home make any difference except give me time to lick my wounds?  I'm not sure.  Staying home makes managing Lisa's care much easier and perhaps eases the stress for the rest of the family, but when we are faced with frequent admits the stress will rise no matter who is with her and work/school is what gives us our sense of "normalcy"; a place to go where we can forget about the cancer for a while and feel like we are being productive.

I am keeping my fingers crossed, trying to slow my thoughts and heart rate as I prepare for my new adventure.  I pray that Lisa has not come to the end of the line and I read and look at every option that is out there for the next direction to go.  I pray God gives us guidance and helps provide answers on how best to care for her along with our other three children who surely are impacted by this evil cancer.

Despite all the stress, we did get a chance Friday to have a wonderful bonfire at the lake with our friends the Grendsya's and enjoyed some time on the boat yesterday. Hope everyone else had a chance to enjoy the great weather here in Michigan.
Please send up some extra prayers this week for all of us.  Also, if anyone knows someone who is looking for work, we are considering hiring someone to help out with taking kids to sports, school events and even possibly stay with Lisa at the hospital some days if she is admitted.  We wouldn't be able to pay very much, but we will do the best we can.


Monday, October 3, 2011

It never gets easier

Thursday I was very excited to get a job offer for a corporate training position with a company in Southfield.  My joy was short lived when I later found out that Lisa's scans had come back showing "multiple new foci of MIBG uptake mainly in the skull, thoracic spine, lumbar spine, left pelvis and bilateral femurs" .  This basically translates to: the cancer has grown in most of her "bony" parts including her skull (which I was expecting because she has been complaining of headaches very frequently).

At the doctor appointment today, the decision was made to put her on the chemo drugs Cytoxan and topotecan.  These were the very first agents she ever received.  The docs are trying to hit her hard with the strongest drugs they have.  Rereading the blog entries from the first chemo, I realize that even though we've been doing this for three years, it never gets easier.  I still have all the anger, fear, queasiness, apprehension that I did that first time.  I struggle with the best way to move forward yet still stay in the moment.  I feel paralyzed with indecision and no control as "what-ifs" circle through my brain. 

Given Lisa's situation, Mike and I have discussed in detail whether or not I should take the job offer.  We've both decided that it is the wise thing to do at this time.  We are hopeful Lisa has a good response to the drugs and continues to fight for numerous years which means we cannot put our lives on hold and "wait" for the inevitable.  We must live each day to the fullest and make the most out of our lives.  While the chemo regimen Lisa will be on is very rigorous, we are hoping that things will work out and that Mike will be able to adjust his work schedule to take Lisa to daily chemo treatments every third week.  We are also hoping to find some people to help out in the weeks in-between when her counts drop and she is not feeling well enough to go to school. 

I feel a great sense of guilt not being there for her every day she is getting chemo or if she is ill, but as my mother always told me "cross that bridge when you get to it".  At this point in time, we have no idea how Lisa is going to react to the drugs this time around....she could have no side effects and be bouncing off to school like she usually does making this whole dialogue of how to juggle schedules a whole waste of time.  If she does get sick, we will deal with it and as Mike says "Allah will provide"....God will guide us and give us the resources we need. 

If Lisa's scan results weren't enough to remind me that each day, each moment is important, then the "lock down" at Maranda's high school campus certainly drove the message home.  Nothing like yelling "love you" to your kid from your bed as she leaves the house to get to the bus stop and then find out two hours later that she has been in her first class the whole time because a note was found that stated a "threat of student retaliation.”  After driving by the school, calling the school and texting various other parents and Maranda's friends, we finally got word that kids were in classrooms and being dismissed to the buses which would transport them home.  By noon, I had Maranda and two of her friends at my house.  While they were all very matter of fact about what happened and laughing about the rumours of  shark in the pool, deers in the hall, bombs, etc I was still freaking out.  Mike, trying to be helpful, gave me a statistical analogy of Maranda being 1 in 6000 kids so it was a slim chance that she'd be the one who was a victim if there was any danger.  Are you freaking kidding me?! For the past 3 years, we've been the statsitic; of course if it was going to happen to anyone she would be a good bet! was a very long, eventful day.  One that has exhausted me but not taken any of my loved ones from me.  What more could one want?  Tomorrow is another day, one that I will face with hope and vigor as I attempt to live every moment of it!  Pray, Pray, Pray!