Winter Fun

I'm definitely not one who enjoys winter.  I begin counting the days until Spring right after our first snow (80 days to go!).  But today....today, I really enjoyed our Michigan winter.  We are out at the lake house.  I arrived yesterday and marveled at how much brighter and upbeat it felt here vs "back home" a whole 25 minutes away.  The difference I think comes from all the natural light streaming through the windows, the bright sun reflecting off the snow, AND people outside having fun!

Most of the time in Canton "suburbia world" I find myself hunkering down and staying inside.  It's not very bright and the only people I see outside are the occasional dog walker and drivers of cars slipping and sloshing down the street.  Here, even when I'm inside, I feel energized looking out and people watching.

Surprisingly, it was Maranda who was asking to come out to the lake house during Christmas break.  The kids really enjoy it!  Even though it's cold, they bundle up and spend the day ice skating on the lake, watching the ice fisherman, and people 4 wheeling across the ice. 

I spent most of today cleaning the kitchen, and enjoying the fantastic view.  It was great to see the kids spend HOURS outside today!  At about 4:00 Mike and I were able to join them.  We laced up the skates and got out in the fresh air.  It was so much fun!!!  Lisa doesn't ice skate yet, but she has fun pulling us around being the train leader!  Mike and Maranda practiced their "figure" skating.

We'll be on the ice tomorrow,  If anyone wants to come out and join us, grab your skates and hot chocolate and give us a call!

For all of you who have been praying for our friend Bridget...thank you, thank you, thank you.  The prayers are helping.  She is 10 years old and has been stumping doctors for almost 2 years.  Her cancer is in the brain and there is no real name for what it is or how to treat it.  Neurosurgeons have expressed dismay in the past seeing Bridget walking and talking when everything on her scans have led them to believe she would be bedridden and not functioning.  Her doctors have even pointed to heaven as the only way to explain how she continues to improve.  Her mom posted today:  "Bridget spent the night in the step-down ICU and will be fully released from the ICU and moved into a regular hospital room this afternoon.....Bridget's cancer remains an enigma, with little/no case history to guide the doctors on how to best treat it. Plus, it's quite advanced, so it's impossible to project how this will all play out. We remain confident and trusting in God's plan for this little girl, and continue praying that God show us the decisions to make at each step along the way."

Please continue to pray for Lisa, her cancer buddies, and all the other cancer warriors!

Have a great day and remember only 80 days until spring!

Make that two teeth!

Last night after I posted and Lisa had gone to bed, both she and Maranda reappeared giggling.  Apparently Lisa decided one tooth was not enough to give to the tooth fairy and she worked and wiggled a second tooth out.  She went to bed satisfied that the tooth fairy would be very pleased with getting two teeth at one house.

Today we got together with Mike's siblings and Mom to celebrate Christmas.  Lisa was all smiles even with her gaping hole!

Hope everyone is enjoying their holidays.  I feel so blessed to have my children all here and healthy at home with us. Please send up a prayer for our friend Bridgette who has been in the hospital since 12/20.  She is fighting to hang on and she and her family celebrated Christmas together around her bed in the ICU.  She too is a cancer warrior who also needs a miracle. 

Keep praying, keep hoping!

Tooth Fairy coming tonight

Lisa manages to keep the excitement going.  She pulled out a tooth today.  Looks like the tooth fairy has to come tonight....good thing she didn't have to make the flight last night, I'm pretty sure she was helping out Santa!

As I'm typing this, Lisa just asked "What holiday comes next?"  She's ready!

Happy Holidays!

One more day until Christmas!!!

I'm sure it comes as no surprise to anyone that Lisa and the rest of the kids are completely ready for Christmas and me, not so much!  Are you sure it's tommorrow?  I need about two more weeks.  I cannot tell you where the time has gone or what I've been doing, but it is going to pass me by before I'm ready.  Hopefully all my friends and family whom I normally send Christmas cards to are reading the blog, cause I don't think I'm going to get Christmas cards out this year!  We did get some things accomplished in the past few weeks...mostly at Lisa's insistence!

We saw Santa at the Mall

We made cookies...to see who was really behind the cookie making, click this link to see the video.

Lisa picked out Christmas Gifts

We went to the McMaster Family Party

The tree got decorated (thanks to Lisa, Chrissy and Thomas)

Presents were wrapped

And now, we run around doing last minute things as the minutes count down.  We got church and the Yesh party tonight.  Merry Christmas!!



Christmas is coming

Lisa has been doing very well.  She only got sick after chemo one time this week.  We are still working on her appetite; she lost another pound this week.  Hopefully with all the holiday fun and festivities coming up we can get her eating and over-indulging like the rest of us!

We spent close to two hours in the car to go to the Kids Kicking Cancer Christmas party.  Santa, Rudolph, Mickey and Minnie were there.  The kids enjoyed food, dancing, arts and crafts.  Every family got a big family bag of gifts.  Lisa enjoyed herself and everyone had a good time despite the long drive and snowy roads.

I cannot believe it's 2 weeks to Christmas.  The only person I've bought gifts for is Maranda and that's because she is a shopaholic and constantly picking things out for me to pay for which I put into a "presents" pile at home.  Lisa is actually a little tough to buy for....she has almost every baby imaginable and with three older kids, we are well-stocked on pet shop, polly pocket, barbies, craft kits and almost every board game.  Ugh....what to buy, what to buy!?

If all continues to go well, Lisa will only have blood draws one day a week for the rest of December.  Scans are scheduled for January and if no study opens, she will have another round of chemo.  We count our blessings and are so glad that Lisa will get to spend another Christmas at home.

Please offer up prayers for some of our Mott's buddies (Bridgette, Cody and JD) who have been in the hospital and hoping to be home for Christmas!

Chemo Day 3....Lisa's hanging in

It's only Wed and it feels like the longest week ever.  Lisa started her chemo this week.  She goes to school in the morning, comes home, eats a quick lunch and then we go to the hospital.  

Monday, Lisa was grumpy, but she handled the chemo well.  Tuesday she was on her chemo high, in great spirits and practically skipped into school.  She was in great spirits when we went to the hospital, but the chemo yesterday afternoon knocked her for a loop and she got sick last night.  Her appetite was shot and she didn't eat much for most of the day today.  She handled today's chemo better (we made sure to give her double doses of nausea medicine) and with frequent rest breaks and naps she had a bit of an appetite tonight at dinner.

Two more days of chemo and then we will just do lab draws until January.  We'll have scans done in January and hopefully a study will open up that Lisa qualifies for...otherwise we will continue with chemo.

She's a trooper; keep praying that God continues to give all of us strength.

Round of Chemo coming up

We had a good weekend.  Got the Christmas tree and decorations up.  Lisa has been feeling very well and we are hoping that she handles the chemo well.  Have to take a look back at the notes and refresh our memories to try and remember how she reacted to these drugs.  It's been almost 7 mos since she had any chemo drugs and while we should know the drill it's still a bit nerve racking.  Hopefully this week will go by quickly, she will continue to feel well, and new options will become available to help keep the cancer at bay.

Keep praying!

Happy Belated Thanksgiving

Sorry for the lack of updates!.  Many people have told me that when we don't update the blog they know everything in fine, because no news is good news.  While that is normally the case, I feel a but guilty that the blog has become something of bad news tabloid instead of a sharing of ALL our experiences.  As tough as these last 2.5 years have been, there have been some great times, as well as, "normal" times that balance out the bad.  I hope to share more of the great with everyone so that a sense of dread does not overwhelm everyone anytime an update goes out! 

So, here's some great and normal news.  We had a wonderful Thanksgiving.  It was nothing out of the ordinary, it was one spent with family instead of in a hospital room.  We were doubly blessed because we got to do one Thanksgiving dinner with my family on Thanksgiving day and another Thanksgiving dinner with Mike's family on Saturday.  We really enjoyed spending time with both sides of the family. 

Mike's family was surprised when his brother Brian appeared in the house unannounced.  He and his family had traveled from Alabama this year to be be with everyone.  All the kids were thrilled, they have missed their cousins quite a bit.  It is so wonderful to see this next generation come together, hang out, go swimming, watch movies, play games, even though their ages span from 10-16.  It's also amazing to see how how these "kids" are growing up into "people" who you can actually converse with and share jokes, memories and stories with.

Thanksgiving is a time where we can really take a look and count our blessings.  I sometimes struggle with this, but this year I was able to come up with a few things.  I am blessed:
-To have a wonderful husband and  4 beautiful, funny, intelligent children
-To have both my parents and my mother-in-law with us and in good health
-To have so many people who love and support me
-To have my own health
-To have a safe, comfortable place to call home
-To have a chance to make a difference with my life

I'm sure I could come up with more, but those are the ones that came to me immediately. 

By Wednesday of this week, we will have a better idea of what next steps will be for Lisa.  As of today, the doctor thinks we may have her do a "maintenance" chemo next week until we can find a study to put her on.

As always, keep praying, count your blessings and know how loved you are!

The options

Sorry to keep everyone waiting for news after our doctor appt this week.  I was at the hospital both Thursday and Friday for quite a while visiting/helping two different friends whose children were in for care.  It was kind of nice being able to focus on someone else's problems for a bit.

On Wednesday, the doctor listed out seven options for us.  None of them are a "cure".  They are all "trial" drugs/therapies.  They are still in test phase to determine how they impact neuroblastoma cells...do they slow the growth, stop the growth or do nothing....all of the options are things to "try" vs doing nothing at all. 

The number one option---Senecca Valley Virus--seemed like the way to go and we were told there would be a trial opening in two weeks.  Unfortunately, because Lisa is not toilet trained at night and has been having incontinence issues since the antibody therapy she is not eligible for this study. Crazy...who would think our decision to focus on fighting cancer instead of toilet training at night would bite us in the butt!!It was pretty disappointing to hear that she couldn't participate in this study.  We've heard good things about it and we want to try everything and anything to beat this miserable disease.

The next option--ALK inhibitor---is most likely the one we will try next.  Again, the success of this therapy is limited and not known to cure but hopefully could slow the cancer down until a cure is found.  The waiting for a spot to open is nerve wracking  because of the waiting, we don't want to give the cancer a chance to take over.

Lisa so far, looks great and seems to recover more and more each day from the antibody effects.  I continue to reach out to some of the neuroblastoma support groups and doctors to see if there is anything else we might be doing.  We are in good hands at U of M and we are very happy with our care.  We continue to read and be on the lookout everyday for the miracle, the thing that will make this cancer a thing of the past.  And of course, we continue to pray!

Bittersweet News

We are home!  We flew home yesterday with Lisa looking good and feeling good....that is the good news.  We came home early because Lisa is not responding to the treatment...her cancer has grown...that is the bad news.

While this was one of the most enjoyable times we had at St Judes with lots of activities to particpate in, our visit was short because of Lisa's scan results.  Scans this month compared to last month show multiple spots in both her right and left leg and parts of her groin area.  This is not news we wanted to hear.  When the doctor told me, I basically put up my "wall", shut off my feelings, and proceeded to book a flight home.  It's still too fresh and painful to talk or think about so I'm basically in the "feel nothing, think nothing and pretend none of this is happening mode".  Mike and I will be meeting with our U of M docs soon to determine next steps; options are few and very limited.

Lisa knows her cancer is "winning" but is glad to be home and willing and able to fight back.  There is still room for miracles.  As we rev up for the holiday seasons the one word that is constant in my mind is Believe.  Believe, Believe, Believe. 
Please keep praying....and keep Lisa on the prayers lists...she (and all the other little cancer warriors) need a miracle.

Lisa turned Matt Lauer into a frog

Today was the big pajama party at St Jude.  The one that the Today show and Marla Thomas were supposedly filming for viewing over the Thanksgiving week.  While most of the day things were pretty quiet, Lisa and I did run into a camera crew who was touring the building after one of her appointments.  Lisa had just received a "magic" wand as her prize for doing a good job and as we were cruising by the camera crew she said "abracadabra..I turn you into a frog" and pointed the wand at the last guy.  The rest of the crew all laughed and smiled and pointed at their buddy. Lisa and I proceeded to the cafeteria and I told her she really should have turned the guy back to a human because he was there working and she couldn't just turn everyone she saw into a frog.  She agreed to limit the use of her power.

As we circled the hospital again a while later, we ran into the same crew again and the "frog guy" ribbited at us.  Lisa graciously turned him back into a man.  The crew laughed and as we reached the end of the hall, there was Matt Lauer all by himself waiting for the crew.  I knew they were busy and didn't want to interrupt him so I wheeled Lisa on by.  We got a few steps past and I stopped and told Lisa "If there's anyone you should turn into a frog, it's that man."  Lisa twirled her wand, said the magic words and turned Matt Lauer into a frog.  He saw her do it and came over to ask what she said and than begged her to please not turn him into a frog...she quickly turned him back into a man.  He asked her name, shook her hand and told her it was nice to meet her.  As he walked away, it occurred to me that I'd just missed a Kodak moment.  I figured we would catch him later at the pajama party.

A short time later we passed Marlo Thomas in the hall.  I walked right by her as she blended right in with all the other business women standing around her, but then I heard her voice and realized I could have reached out and touched her.  Once again, I opted not to disturb her and wait for the Kodak moment later at the pajama party.

Unfortunately, the Kodak moment never came.  While Lisa was in her last appointment for the day, they kicked off the pj party and Marlo and Matt made their appearances in their pjs and then they were gone.  While I was disappointed, Lisa was quite satisfied with the dancing, arts and crafts, and cookies that were offered.

Lisa and her St Jude Child Life Specialist at PJ party

It was a really fun time and we followed it up with a BINGO game at our hotel where Lisa won numerous prizes leaving me wondering how the heck we would get everything home.

It really has been a fun week, one that has been full of activities that have made the days special.  It really showcased what St. Jude is famous for...being the number one pediatric cancer hospital in the world.  A place that is seeking cures to assure, as Danny Thomas' said, that “no child should die in the dawn of life”; a place that is making sure that these little cancer warriors are blessed with special moments as they fight for their lives.

Time Flies and so do we!

Not sure how it happened but the two weeks we were home flew by (sorry for so few posts) and we are back at St Jude.  We got in last night and started appointments this afternoon.   Lisa and I are both exhausted and I"m not sure why...the time change in MI and the time difference here should put us right back on track, but for some reason we are out of whack.

Both Lisa and I are cranky and very reluctant to be here.  Last night when we checked into our room, Lisa took one look and said she wanted a different one; apparently now that we are frequent visitors to St Jude we've been down-graded to the regular room instead of the suite. When I asked why, I was told the suites are only for the new patients.  Wow, talk about bait and switch...it's like they are trying to impress you the first time you're here, but after they got you, they know they'll keep you coming back.  I would have rather just had the regular room to start with so I wouldn't know what I was missing!  I rearranged the room a bit so Lisa could have a place to play and we've settled in. 

We were able to participate in a fun activity today.  The National Auctioneers Association (NAA)was here today and took some time to teach the kids some tricks of  the trade and then they had an auction with toys for the kids to bid.  The  NAA provided all the toys and gave each child an auction paddle that they used to do their bidding (no money was involved just lots of paddle waving and fast talking).   All the child had to do was wave his paddle when they saw the toy they wanted. I'm sure you all know what Lisa set her eyes on...yes, a baby doll...the only one at Target we don't have...the one that goes in the bath.  It was very fun and she was a happy girl.

Rumour has it that Thursday night there will be a pajama party in the cafeteria and that Marlo Thomas and the Today show may be present.  While I'm excited about the possibility of meeting "that girl!" I'm not excited about the hubbabaloo that comes with the tv crews and possible filming.  Oh well, that's the price we pay for being at such a famous hospital!

Hanging in there

Lisa has been doing remarkably well this week.  She has been to school every day.  Docs assume she may be doing so much better this time because her body is getting used to antibody...I think it's the painkillers.

We left the hospital after the first antibody treatment with no pain control.  This time we were wise....she takes pain meds every 4-6 hours and we are able to keep her comfortable and functioning.

I just finished reading my emails and realized we are already due back to St Jude the week after next...man, time flies.

A new week...at home;)

Yeah...we are home, again.  We got home Friday at around 5:30 and then proceeded to go North to visit Mike's mom.  Lisa was so excited about seeing Grandma Mac.  We had a nice time just hanging out and Lisa's pain seems to be less this second round of antibody.  She is only taking pain killers 2-3x's a day and is up and about and playing...yeah!
She'll have appts at U of M twice a week until we go back down to St Jude's.  If her scans continue to show her disease is stable she will be eligible for two more rounds of antibody.  No real way of knowing if this treatment is working or how much time we are buying her, but if she is able to bounce back and not continue to have pain, we are willing to continue the treatment.

Lisa has looked so good the last two days that the plan is to send her to school tomorrow.  Of course, when she heard this, she said she couldn't go because it would hurt her neck!  They learn fast, don't they!

Glad to be home!!

Course 2, Day 4 much smoother....and this course is complete

Course 2 Day 4 went very smoothly.  Lisa was very restful and calm when it was started.  Have no idea if it was from all the meds in her system the day before,  because it was  later in the day when we started, if it was the change in pain killer or skipping the premed antivan, but I was very happy that she was feeling little pain. We sailed past the 15 minute and 30 minute marks with no problems and at the two hour mark she asked to do a craft.  What an incredible change from one day to the next.  She breezed thru all four hours getting pain meds when needed and sleeping on and off.   It would be nice to know what the magic formula is but it continues to change which each dose which is what makes this so hard to do.

Lisa just stared at me as I did the "we made it past 2 hours happy dance"

Last night went pretty smoothly and we were able to keep her pain under control.  She did throw up once, but after that was fine.  She slept pretty well and did not even wake to the crazy fire alarm that went off at 6:30 am for a drill.  The staff is soooooooo lucky they were all behind the fire safe doors and I was exhausted because I'm not quite sure what I would have done to someone if I had got my hands on them;)

We are waiting to be released from inpatient.  For some unknown reason, Lisa's platelets fell and she needs to have a transfusion before they will sign us out.  From here it's back to the Grizzly house for the night, a day of rest tomorrow and then labs on Friday.  If everything goes well we will hopefully be flying out Friday.....keeping fingers, legs, toes and eyes crossed that we can get out on Friday and don't have to wait for a flight on Saturday.

Next steps will be to follow up with more labs on Monday with docs at home and determine if we will be doing this again for course 3 in a few weeks.

Course 2, day 3---long day...should we continue

Lisa's various reactions to the meds and the treatment she is receiving kept me up last night as I researched and questioned whether we are doing the right thing.  She is in so much discomfort and basically living her days in a sedated world that I'm having a hard time reconciling this with giving her a good quality of life.  I had made up my mind to ask doc today if they could cut antibody dose back this morning because perhaps it is just too toxic for Lisa.

Why I toyed with how to phrase the question, one of the docs came in this morning a proposed a more structured way to administer the pain drugs with the hope of keeping Lisa more comfortable thru the day.  I agreed as my mind did the tug of war of the benefits of continuing vs giving up.  If we can control her pain then giving her the antibody makes sense because it could give her a longer life, on the flip side, her quality of life is being compromised and so far she has already given up 6 weeks of life to this study.  Also, the effectiveness of the antibody is not known yet.  I have gotten different statistics from different people re: how much time this buys kids.  One person reported his daughter did well with this antibody over one year ago, another person reported that she knew that 6 of the first 12 patients in this study passed away within 18 mos of completing it.

I agreed with the doctor to continue and give it one more shot with the hopes Lisa would sail thru the day.  In my mind I told myself I would not allow them to give her the antibody until she was not sedated and sleeping. We began premeds at 9:30.  After giving her tylenol, 2 antihistamines, anti-anxiety and morphine, Lisa was still wide eyed and agitated.  The nurse honored my decision not to continue with the antibody until we had Lisa sleeping.  We gave her a second dose of morphine...still nothing...except she got a bit more agitated and insisted she wanted to get out of bed and eat.  She tried getting out of bed but could barely stand up with all the meds in her...somehow she managed to grab her box of cocoa puffs from the table next to her bed and start eating.  Really?  The girl is supposed hopped up on pain meds and she wants to eat?  After she finished with this distraction she kept asking for an owl I promised to get her from the gift shop once she went to sleep.  She would close her eyes for 5 minutes and then open them and tell me she had gone to sleep and wanted her owl.  We continued this game until about 1:00 when her regular doctor came to check on her.  We discussed our options and she decided the next best thing to do would be to change Lisa's pain med, to see if we could get a better response than with the morphine.  Lisa was highly agitated at this time and the doctor and I agreed that we before starting up again, we should take a little break and give the drugs a chance to wear off.  I took Lisa her for a walk outside in her wheelchair and we went to the gift shop to get the owl.  I was certain the fresh air and sunshine would  knock her out.  Hahahahahahahahahahahahahahaha.  Oh, she closed her eyes once or twice, but this girl is stubborn.  Even after she got the owl, she still wasn't going to sleep.

Once we returned to the room it was close to 2:00.  Had I let them start the antibody on time today we would be finishing up at this point.   I wonder what I had gained with the approach I took....for all the agitation and frustration we went thru we could have just put her on the antibody and dealt with the same amount of screaming and been done with the treatment!  How was I to know that Lisa was going to be so sleep resistant??

We had to start all the drugs over.  We were certain with all the screaming she had done and another round of drugs, Lisa would just collapse in exhaustion.  We got all the drugs going again and at 3:00 when we were ready to run the antibody, Lisa was still awake.  Admitting defeat I told the nurse to just go ahead and run it, at this point could it get any worse?  Sooner or later Lisa would have to tire out, Lord knows I was exhausted.  It took the drugs, a bit of force, and a bit of being the "No" mom repeating over and over again "No, you can't get out of bed" "No, you can't take your tubes out" "No, you can't go to McDonald", "No, you can't go for a walk"  before Lisa finally fell asleep at 4:15.  Her body was already so agitated and tired from the rest of the morning that when the antibody started running her stats barely changed and we didn't notice a big change in attitude, cause really how much more cranky can one get?

She slept until about 7:00, but every time a nurse came in to take her vitals she fussed and screamed.  She has been resting most of the evening but is easily agitated.  We have one more day to get her thru this course and then hopefully we will be cleared to come home this Friday.  I hate wishing days to go by quickly especially knowing our days are numbered, but I honestly cannot wait for tomorrow night to be over.

I pray and pray that tomorrow will be an easy day and that once all the pain meds where off Lisa feels good and can go back to walking and eating and smiling and not have to rebuild up her strength like after course 1.

Long day...day 2, dose 2 of antibody HU14.18

Unfortunately, today did not go well.  Lisa had lots of pain.    She was sedated, but not asleep when the antibody began to run at 9:30am. At the 15 minute mark she was restless and uncomfortable; and, once again, this pivotal time set the pace for the rest of the treatment. Her vitals went crazy and she started fussing. We got the oxygen going and she settled down a little bit but was obviously in pain.  As the time ticked by, the pain got worse...at the one hour mark she was crazy with pain and they gave her a second dose of morphine. Hour two was filled with lots of screaming and tears and I tried to wrap my brain around how much pain she must be in that she was still bolting upright even after the second does of morphine had kicked in. Hour three was a bit better and she seemed to get a bit of rest in between her waves of pain.  The fourth hour was excruciating to watch (and I'm sure to feel). Lisa was inconsolable and I was mentally sending up prayer after prayer to God and every saint I could think of and sending Mike a  "get plane ticket, come now" thoughts.  Towards the end of the fourth hour, the rash that appeared yesterday, reappeared with a vengeance.  Instead of just dots, she also had the color pink traveling up her body; just looking at her made me itch. Poor thing; she was miserable as she scratched and cried. The doc on call prescribed Zantac (say what?! it's normally used for reflux but apparently has great antihistamine blockers....who knew?) and it helped calm the rash down, but not the pain.  She continued to be in and out of pain for the next two hours even though the antibody had finished infusing.  At about 3:15, she finally drifted off to sleep and continues to sleep almost two hours later.  Thank God.

She has two more days of antibody for this round and if it's going to be like today, it will be very tough for us to get through.  I can't imagine the strain this puts on the rest of her body...heart, lungs, etc.  It's a very big shock to her system.  I pray that the time we put into this is worth it and improves not only her quality of life, but her quantity.

Please continue to pray...the days are long when a child is in pain and you can do nothing to help them.

Power of Prayer

It is nearly 6:00 here today and so far so good.  Once the first hour was over, Lisa remained stable for the rest of the day.  She gets pain meds every four hours and this seems to be keeping her comfortable.  At 4:00, she sat up, asked for water, told me she felt fine and went back to sleep.

I pray and hope we continue on this peaceful path. She is a wonderful little girl and truly a fighter.  I continue to cross fingers, toes and legs and pray constantly that the next few days and recovery at home go smoothly and her pain dissolves and her cancer retreats.

Thank you all for praying!

1 hour into second antibody course...things now peaceful

Thanks to all of you out there throwing prayers our way.  They are working.  Lisa was infused at 10:06 this morning.  She was doped up on morphine and ativan when it started running.  At the 15 minute mark she started coughing, I noticed her face looked mottled and splotchy.  I called for the nurse...the next 10 minutes raised by as her her heart rate jumped, her oxygen fell.  She was hooked up to oxygen and things started to settle down.  She "slept" thru it all.  At the 1/2 hour mark she was still zoned on the drugs and her stats stabilized.  At the one hour mark, she continues to "rest" and does not seem to be feeling discomfort...yeah!! I hope it continues to go this smoothly.  Please, please, please God let her feel peaceful and pain free.

10:06 am...second antibody course started..please pray

They just started infusing antibody...next 1/2 hour will be telling on how Lisa will handle this...please pray for strength and comfort

THIS is the St Jude everyone raves about

All of Lisa's scans and test have come back showing her disease has not gotten worse which is great news.  It also means we can continue with antibody round 2.  Given all the pain Lisa was having, the doctor actually seemed a bit surprised that Lisa's disease remains stable;  the last patient to go thru this dosage of antibody had progression of disease so he was dropped from study.

Lisa continues to have pain specifically in her hands an feet.  Having an extra week has helped and she is doing better and even managed to be pleasant for a good part of the week, but the pain is still there.  It is with much apprehension that we enter round two of this antibody.  Neither the doctor nor the neurologist we saw for pain could say whether this next dose would be as bad as round 1 or if the nerves were already so frazzled that the pain would be less.  They also could not guarantee that it would not cause long-term nerve damage.  Based on prior patients, the doctor "thinks" that the symptoms should be less this time.  Becasue Lisa has shown improvement this week, she also "thinks" that there won't be long-term nerve damage...but there are no guarantees.

Lisa is the first patient at this dose level to have the amount of pain she did for the length of time she did; because of this, six more slots will be added to study using this antibody level to document other patients' reactions.

So, after spending a week milling around Memphis, we were admitted as inpatients tonight in preparation for the antibody tomorrow morning.  Finally, I have found the St Judes everyone raves about.  We are in their new building and on the floor where bone marrow transplant is done. It is NICE.  All the patient rooms are single rooms with their own bathrooms.  They have the normal hospital bed, tv with dvd along with PLEASANT staff, big windows, a couch bed, lazy boy chair, built in cabinets and a door that leads right into a parents room.  The parents room has its own couch bed (they offered to move a FULL size futon in if I chose), lazy boy chair, table, side table, built in closet, computer desk, tv with working remote and dvd player AND its own bathroom including shower.  It's heaven!  I know, easy to please!  I really hope Motts new hospital includes these type of accomodations.  You would think that they took the best of the best when building the new hospital and the features here at St Jude's building are very nice and make a hard situation much easier...THIS is the St Jude everyone raves about!

Please send up a few extra prayers the next few days that Lisa's pain in manageable and that she is able to stay strong and  continue forward.

Fun in Memphis

Well...thanks to Aunt Julie and cousins Mitch and Alyssa we survived the weekend and had LOTS of fun.  Lisa did really well on Saturday and required no pain meds at all, she even ate 3 meals.  Her cousins kept her busy and laughing and it was wonderful to see her feeling so well.  The doctor had asked that I try to get her off the pain killers and this was a great first step.

Sunday she did pretty good, but started to fade towards the evening.  That night she was pretty agitated and required pain meds twice.  Monday she was a bit groggy and was doing fine until her physical therapy appt.  She was not cooperative at all.  We even tried to have Mitchell and Alyssa coerce her into participating, but it was a no go.  Once the therapy session was over, Aunt Julie and the kids headed home and Lisa took her pain meds and slept for 4 hours.  She was feeling better afterwards and we took a shuttle ride to Walgreens for some items.

Today, I caved and gave her her pain killer at 10:30 in the morning. She was miserable and after the one clinic told us we had to reschedule our appt because we signed in 10 mins. late (yah, like we don't sit around waiting on them all the time!) I couldn't take any more aggravation.  I gave her the meds.  They kicked in and she was FINALLY in good spirits and cooperative with the head doctor here.  The doctor was so pleased she said that if Lisa looks this good on Thursday we will  most likely go ahead with the antibody on Saturday.  I made sure to tell her that it was drug induced happiness and she seemed to be okay with that.  The thinking is that Lisa's nerves are already on alert so the second antibody shouldn't be as shocking to her system.  There still is some concern about her bowels....even though she has been taking laxatives the last 4 days, nothing has "happened" down there since we got to St Jude over a week ago.  So far she isn't having any symptoms, but they are still keep an eye out for a bowel obstruction.

Holding my breath and saying lots of prayers that this is all worth it and she will bounce back!

Here's a little video we put together of our adventures in Memphis this weekend.

St Jude...be here a little longer...possibly

It's been a bit of a trying week.  Lisa has been hit and miss with her moods, generally most of her meanness is directed at the doctor, poor woman.  Lisa is really trying and even told of the few of the workers they are her friends which is wonderful to see, however, by the time she sees the doctor she's usually tired and uncooperative.  Not sure why, but it could be the long wait for the doctor and the timing of the appt which is usually at the end of a pretty full day of tests.

I had a few anxious moments this week with test results, but so far everything has come back as stable disease. There was some concern about the cat scan because Lisa's bowel is dilated...surgeons were cconsulted and because she is  asymptomatic, they feel that at this time there is nothing to be concerned about. They have given me a list of symptoms to look out for which would indicate that she has an obstruction in her bowel.   Her MIBG scan showed something questionable on back part of her left leg, so they rescanned her legs today. Radiology doctor who read the scans concluded  that it is not neuroblastoma again supporting the finding that she has stable disease.
Her doctor here is worried about her gait and difficulty walking. The doctor has scheduled an MRI of the spine and brain for next Wed. We are holding off on antibody until MRI is done and hoping that the extra time will get Lisa back to full strength and sleeping, walking and pain free before starting second round of antibody.

This means we get the weekend off from appts, but we will still be here at St Jude.  Thankfully, my sister-in-law Julie, who lives in Alabama, had already planned to come visit with her kids and keep us company for a few days.  While they won't be able to help us in ICU, they should be the perfect antidote for Lisa's aches and pains and hopefully get her feeling better.  She is so excited to see her cousins Mitchell and Alyssa.  We're hoping to finally make it to the zoo! Although with it still being in the 90s, I'm not sure what animals will be out.

If MRI does not show anything concerning and we proceed with the next round of  antibody we will be tacking on some extra days to our visit here.  Original return date was Oct 15...if we do the study, we most likely won't be returning home until. after Oct 19.
 
On another note, we would like to thank everyone who participated in the auction for the Michigan vs Michigan state tickets.  The winner of the auction was Ryan Tobin with a final bid of $310.  The money has been given to C.S. Mott Children’s Hospital/University of Michigan. Congratulations Ryan...you better be cheering for the Wolverines!!!  GO BLUE!

Back at St Jude

Well, we flew back to Memphis today.  Things went off without a hitch until we tried checking into the Grizzly Hotel at St Jude.  They were overbooked so they sent us off campus to the Crowne Plaza. It's still all paid for by St Jude and they provide a shuttle, it's just very inconvenient getting back and forth, it's not very kid friendly, the beds are lumpy, the room not so clean, it's noisy and you it smells a bit funny (could be the exhaust from the freeway).  But we'll make do. 

We also had some difficulty getting a prescription filled which kept us hanging around campus for an extra hour.  Waiting in the pharmacy we met another family whose little boy is in remission from neuroblastoma.  He's younger than Lisa and was eligible to receive both MIBG and antibody treatment as part of his initial protocol.  The mother did say he had some residual pain from his antibody treatment, but nothing as long as what Lisa has experienced.  We have scans tomorrow and Thursday and don't meet with the doctor until Friday; it will be interesting to hear what she has to say about Lisa's pain.

Surprisingly, once we got to the hospital, Lisa perked up.  She was actually "hopping" on some circles and counting them while we waited for the prescription.  Not sure if it was the visit from Grandma this afternoon, the hospital air, or all the prayers being offered up  but it was a wonderful change of pace and we had a very enjoyable evening which we finished up with eating pizza in bed!

Keep praying, keep hoping, keep believing!

Online Auction---Bid on Michigan vs Michigan State tickets

Lisa continues to be the trooper.  She went to school today and went home with Ms. Lisa after...as usual, she ate a big lunch with her buddy (Ms. Lisa must have a secret recipe for mac and cheese!) and they played and enjoyed each other's company.  She still is taking pretty long naps in the afternoon and is frequently experiencing pain in her legs and hands.  Her doctors at Motts are pretty convinced it is from nerve pain which is a side-effect of the antibody she received.   She is scheduled for scans starting Wed at St Jude and these should let us know if the cancer is stable or growing.  We are giving her pain meds on a regular schedule to make her more comfortable and help her sleep thru the night.

In our efforts to do something we have control over, something positive, we are having an online auction!!! Up for bid are 2 Tickets in Section 37, Row 75, Seats 1 & 2 to the BIG GAME in Ann Arbor, MI on October 9, 2010 between University of Michigan Wolverines and Michigan State Spartans. These are GREAT seats in the end-zone. Included in the auction is an autographed football signed by University of Michigan football stars Brian Griese, Charles Woodson and Steve Hutchinson.

To bid, click here.  (You will need to login with your facebook account or setup a free GiftBerry account to take part in the auction.). The highest bid wins and the funds will be donated to C.S. Mott Children's Hospital for research relating to neuroblastoma, a pediatric cancer of the central nervous system.

Be sure to pass on the link for the auction to any family or friends you think may be interested.

Thanks!
 
 

Perhaps a Sign

This was on the CBS Evening News tonight....it's the same antibody Lisa is getting, they appear to have a few other drugs mixed in and are using it for newly diagnosed neuroblastoma patients.

Treating Neuroblastoma - CBS.com


You can read a similar article at http://www.sys-con.com/node/1552341  Perhaps this is a sign from God  I've been looking for that we should continue with this treatment...good timing don't ya think!

Lisa had her official first whole day of school today...she made it for the entire  4.5 hours of kindergarten.  We did set up a little rest area with a bean bag chair, blanket and mp3 player.  The teacher said Lisa went there once, rested for a little while and then popped back up and went to the math table.  When they went out for recess, the teacher asked her if she wanted to sit and play with sidewalk chalk.  Lisa said no and with her gimpy little gait headed off towards the playground structure!! You go girl!

Making Progress

Monday, Lisa and I went up to the school just as her kindergarten class was getting ready to go home.  She didn't want to be seen by anyone so we slinked thru the school trying to be invisible.  I let her teacher know she was waiting in the the side room.  Her teacher came and gave her a hug.  The teacher also let the kids know Lisa was waiting and made the wise choice of having them line up for dismissal and quietly "parade" past Lisa on their way out.  It was a good way to give everyone a chance to see each other.  Lisa stood with me behind a desk and all the kids waved on their way out.

Tuesday, both Lisa and I went to kindergarten.  It was fun.  We got to go to music and do the math activity before Lisa tired out.  She lasted about two hours.  I have to say, I was having a bit of trouble sitting in the criss-cross applesauce position for too long!  Lisa and I left and she rested for the rest of the day (ok, I took a nap too...kindergarten is hard work!!)

Today was a bit more of a struggle to get her up.  She fought me the whole way to school, but once we were there she fell into the routine.  Her teacher talked with her and they agreed I could go home and come back and pick her up when school was over.  I've been holding my breath ever since I got home waiting for the phone to ring.  I'm not sure if this is harder on me emotionally, or on Lisa physically.  It's a lot to ask of her little body and bless her heart, she tries really, really hard and you can tell by looking at her that she is still tired and aching.

I'm so glad I chose to hold her back in kindergarten.  I can't imagine trying to get her accustomed to a whole new teacher, classroom and routine on her limited schedule! Her teacher, Mrs R. is awesome!!!!! All of you who have been at Hulsing know who I'm talking about.  She is such a caring, accommodating, understanding, gracious, loving teacher.  I can't imagine getting Lisa to go to school without her.  There are a lot of other people at Hulsing looking out for Lisa and to all of you I thank you from the bottom of my heart.  She's a little girl with a big battle and each and every kind gesture you do helps make her fight a little easier.

So, we continue to carry on, because what else can we do.  At this time next week, we will be down at St Jude again.  Lisa will be going thru her scans and we will be getting ready for the second course of antibodies. I'm scared and very anxious.  To see her still having so much pain really makes me question our decision to do this, but the doctors are very convinced it's the best thing for her.  I hope they are right....putting her thru all this pain for nothing would be a tragedy.  I pray that things go smoother this next time and that somehow we all find the strength within to carry on and fight and make the best of this tiresome situation.

a smile and a request for a hug...Life is Good!

Finally....I think we made progress.  Lisa woke me with a smile today and a request for a hug.  Yeah!  It was a brief moment, but we'll take it.

Thursday also provided a ray of hope in this long week of aches, pain and sleepiness.  Lisa was alert and talking and eating in between long rest periods.  Her check up with her doctor went well and we thought we were on the road to happy days.  Unfortunately, Thursday night Mike noticed her cheeks were flush.  We figured it was from sleeping under covers the whole day.  Friday morning, when she finally woke up and stumbled out of bed, she looked like the little girl in the book "Pinkalicious".  Her face was all pink and she was covered with a rash on her arms and torso. She also had a slight temperature. I thought it was "5ths disease".    She seemed to be fine. She ate breakfast and was asking about a play date.  That lasted a short time until she retreated to bed and her temperature spiked.  A call to the doctor got us an invite to the ER so they could assess her.  I called Mike and asked him to pleassssseeeee come home from work and take her to the ER.  Sounds terrible, but I just couldn't do it.  I could not go back to the hospital and sit around and talk to doctors and wait for diagnoses and decisions....I just couldn't...I'd had enough.  I was happy just cleaning out the basement ...that's where I wanted to stay... in my own little world...in a place where I could actually do something...see progress made. It's crazy I know, what kind of person trades in cleaning a basement over caring for her child...a person whose had enough of hospitals, that's who!  So, yes, Mike came through.  He came home, went to the ER with Lisa for four hours and came back with the news that the rash was a reaction to pain meds they had started Lisa on this week.  They dosed her with Benadryl and a pain medicine we used in the past (the one I had originally asked for!) and basically knocked her out for the evening.  Friday was a tough night...she kept spiking fevers and she was totally out of it.  Mike kept a close eye on her and when she woke up Saturday morning, she looked tons better, she wasn't pink and she looked much more comfortable.  She slept for most of the day and by evening she had perked up enough to ask for noodles and a Popsicle.  Once she was done eating, she put herself to bed and slept in her OWN bed for a few hours.  At about midnight, she decided her bed wasn't cozy and moved into mine where she slept for the remainder of the night!

This morning she woke up with a smile and a request for a hug...we'll take it!  Life is Good...in this moment, right now, there are smiles...and that is GREAT!

Still Hurting

Sorry for missed posts...it's been a bit crazy here at the household.  Have to give the older kids a round of applause for hanging in there and moving forward.  Lisa is still not feeling well and her cries and shouts of pain and anger make it pretty stressful, but the older kids have managed to brush it aside and not let it get to them.

Up until yesterday Lisa was still spiking fevers around the clock.  She hasn't slept thru the night in over a week and she's often complaining of pain in her legs, neck and stomach.  She has barely eaten since we got home Saturday and the food she has in her has been forced upon her to which she protested LOUDLY. 

Yesterday, I did sneak her up to the school so she could see her teachers.  I wanted to avoid running into her classmates because Lisa was not feeling very social and I feared any attention from her peers would put her over the edge.  Her teacher was not in the class when we got there, so we left a "mysterious calling card", we switched out Momma Monkey for baby Monkey McMaster.  We then went to see Lisa's speech teacher.  While both Lisa and her teacher were excited at being reunited, Lisa's energy waned quickly.  She lasted about 15 minutes before she put her head down on the desk and said she wanted to go home.  She was so tired she didn't even want to walk.  Her teacher was nice enough to go out to the car and get her baby stroller so we could wheel Lisa out.

After we got home, Lisa rested and took a nap and then we headed out to see her doctor at Motts.  Mike and I are very concerned about her reaction to the antibody, but her doctor is very confident that these side effects are normal for an antibody study and did not seem surprised they were lasting this long.  He feels that we should continue with the study.

I'm not sure how I feel about any of this.   I've having trouble figuring out how I can go back to St. Jude in just two more weeks and watch Lisa endure more pain.  I'm not sure how much time we are buying her with this treatment and I struggle with what the payoff is.  If we are only buying her a few more months with the antibody, is it worth it to put her thru the pain?  If  we are giving up 3 to 4 months to pain just to gain an extra 3 months in the end...isn't it a wash when it comes to quality of life?    If only we had a crystal ball, if only we knew this was working, if we knew how much time we were buying....it's just so hard not knowing and at this point, there isn't an answer.  I keep praying that Lisa will wake up and just bounce back to her normal self so I won't feel the tremendous guilt and fear of putting her thru this again.

Arghhhhh!

We are home!!!

Sorry for missed posts...I've totally lost track of time and days. 

After my early morning post on Wed,  I managed to go to bed and get 4 hours of sleep.  Lisa was still pretty out of it, spiking fevers, aching and not very friendly.  It came as a big surprise when around 2:00 the nurse informed me that she was being discharged?  Huh?  Back home a temp over 101 was a guaranteed stay.  At St Jude, based on the procedure she had done and there 99% certainty that the fever was due to the antibody they were comfortable discharging her. 

We were released with antibiotics that I had to run thru her line once a day and some Tylenol for fevers.  No pain relievers were prescribed because of her adverse reaction to the meds in the hospital.  Lisa perked up a little bit when we left the hospital and wanted to spend time outside. She wasn't up to walking on her own but was happy to be pushed around in the wheelchair.

Thursday we ended up having the whole day off because they moved all of our appts to Friday.  We slept in, spent some time strolling around and then went to the McDonald house so Lisa could play.  She ended up taking a 3 hour nap. She still wasn't herself.  Not a lot of energy, no appetite and having aches and pains.

Friday morning came with the hope of going home.  We spent 4 hours in the morning getting labs drawn and seeing the docs.  Lisa was not very cooperative at all.  For a place that says "yes ma'am, no ma'am" all the time, Lisa's behavior, shouts of no, and outright refusal to listen made her really stand out.  While I'm certain that they are used to seeing all kinds of behavior, for me, it was very disturbing and frustrating.  She rarely acts like that and it was non-stop.  At 1:30 we finally got the ok to go home.  I had already talked with travel and they had reserved us a flight.  I had 3 hours to get the final paperwork tied up, feed us and pack the rest of our belongings.  Lisa was groggy, in pain and no desire to eat or talk.  She sat in the wheelchair for the whole time dozing.  We left for the airport at 4 and the only time she walked all day was to get into the shuttle.  We needed a wheelchair to use in the airports.  She was hurting too much to walk much further than the ramp.  She slept the whole flight.

She perked up when we arrived and she saw Mike waiting with the car.  We got home around 10:30pm and the kids had decorated and made a cake.  Lisa seemed very happy to be home and she actually ate a sandwich and two bites of cake and then it was back to bed. 

She has spent most of the day sleeping today.  She is still toying with a fever and right now is cuddling up with daddy and watching the Michigan game.  I am pretty much emotionally drained.  It is always hard for me to take her into the hospital walking, skipping and jumping and bring her home a crumbled shell of herself.  I keep hoping she will bounce back in the next day or so and make this all worth it.  If not, Mike and I need to really consider whether or not continuing with this treatment is worth it and really improving her quality of life.  We are do to go back in 28 more days, so we have some time to decide.

Glad to be home, but going to take some time to get back into the groove.

Morphine Monsters

Sorry for missed post yesterday.  It was pretty stressful here.  It was the last day for the antibody; we followed the pain med regimen that had worked for the prior two days annnnnnnndddddd while Lisa didn't scream with pain, she was crazy out of her mind! She had gone "hog wild" and "was one fry short of a happy meal". 

We had given her morphine 2 hours before infusion, gave her ativan15 minutes before infusion and the morphine again with the infusion, just as we had done the days before. The first hour went fairly well, but then instead of going to sleep like she normally does on this drug cocktail, she started to get agitated.  Rather than give her more morphine, we opted to give her another does of ativan with the hope that it would calm her and knock her out.  Well that didn't happen....while she would doze for minutes at a time, she never fell asleep.  She spent most of the morning agitated, whining and talking back.  As the afternoon rolled around, she was completely spaced out and wasn't making any sense.  I would say she was talking in her sleep, except...she wasn't sleeping.  ARGH!  As it got later in the day, she started seeing things.  It was very creepy.  She kept pointing at things and asking me who or what they were...I couldn't answer her because there was nothing where she was pointing.  As time went on, it got even worse.  Every time she would drift off to sleep, she would bolt awake and be terrified by something.  One time it was a monster, one time she kept hitting and slapping at her arm because there were spiders on it, another time she kept trying to hand me some non-existent pants.  We thought things would get better as time wore on and the drugs wore off...no such luck.  Now she was waking up and screaming there were dogs behind my head or she would look asleep but the would keep reaching out for things that weren't there. She kept pointing and saying she saw Daddy, she was seeing other friends as well and would tell me what they were wearing.  As it got later in the evening, things started to get more intense. She would wake up and try to stand up on the bed.  The one time as tried to stand she was screaming  "pick me up, pick me up, get my legs off the bed"  apparently she thought there was snow and she didn't want it touching her.  I was afraid to leave her alone because I thought she'd ended up trying to fly or something.   Finally at midnight, I climbed into bed with her.  The ramblings continued but at least I could hold onto her and make sure she didn't hurt herself.  She spent a lot of the night pointing at things and whimpering.   As 4:00 rolled around and the nurse came to do vitals, I got a bad case -of the "what-ifs"...what if the antibody or drugs did something to her brain and she would be talking crazy forever, what if we made the wrong decision in taking this treatment on, what if we traded in her quality of life that had been pretty good for a life of hallucinations....too many what ifs.... I got out of bed and helped Lisa go to the bathroom.  She wasn't talking crazy anymore, but she was talking mean and bitchy... a sure sign her temp had spiked again. We got her some Tylenol and I was sure she would go back to sleep.  Unfortunately once the Tylenol took effect, she started complaining her neck and legs hurt.  I tried to convince her to go back to sleep, but she took it upon herself to buzz her nurse and ask for something for her pain.  Morphine, obviously, was off the list so she got codeine.  Jury is still out on that, she took it about a 1/2 hour ago but is still complaining about pain AND she's already tried to stand on the bed and was pointing at something I couldn't see.  It's 5:30 now and I'm praying real hard that something kicks in and knocks her out for a while. In the past 3 days,  I've had no more than 3 hours consecutive sleep and total sleep has probably been around 15 hours.  If we don't get her settled down so I can get some sleep, I'm going to need the morphine or ativan.  The poor people walking around St Jude, bless their hearts, better steer clear...I'm feeling mighty bitchy...wonder if I could just saying I was spiking a fever!

Day 3 of 4

We are on day 3 of 4 of getting the antibody. Yesterday went much better than day 1, we got her pain meds straightened out and Lisa was able to "sleep" thru most of it. Her sleep is basically morphine induced and according to the monitors and her heart rate, her body is probably feeling pain but her brain isn't registering it....thank goodness for pain meds!!

She continues to spike high temps which is a side effect and Tylenol is helping with that. Between the fevers and the antibody she is mighty sore and achy. But she's a fighter and even in her pain she's figured out that if she bulges her eyes out at me, it'll freak me out...so that's what she does...just like the rest of the comics in the household, she'll do anything to get a reaction!

Monkey Business

This post is a little out of order because of our rough start this morning.  Lisa is doing better but she is doped up pretty good.  She is still having pain which means tomorrow could be another rough time when they infuse her with the antibody.

Anyway, yesterday was a day of misadventure turned adventure.  We got done with all of our appointments by 1:00 yesterday and wanted to go to the zoo, but both of us were too tired.  We ate lunch and took a nice long nap.  We got up around 4 and decided to give the zoo a try...if we could make it there by 5 we would have an hour to walk around.  We were told we could take the St. Jude shuttle to the Target house where long-term St. Jude patients reside, from there it was supposed to be one "block" to the zoo.  Well, that "one" block was one big, big, big, block which was actually one main road to the next main road and over a 1/2 mile walk.  It was 90 degrees and humid.  After walking for 15 minutes, Lisa and I were both miserable.  We were hot, sweaty and upset.  We decided to turn around and walk back to the shuttle.  We got back to the Target house right as a shuttle was heading back so we were able to jump back on and were thankful for the air conditioning, but bummed out about missing the zoo. The shuttle driver suggested we go check out the Ronald McDonald house which is another place St. Jude's patients stay.  It was a great consolation plan.  They had two play structures, toys, bikes, computers and best of all a pantry full of food for their patients.  Lisa was ecstatic....nothing like some good ole Kraft Mac and Cheese and Hunts pudding cup to put a smile on your face.  Have we mentioned that the cafeteria food we've been eating for dinner is pretty awful?  Besides ice cream, that Kraft Mac and Cheese was the first thing Lisa finished since we got here!  And....the front desk had HOMEMADE chocolate chip cookies, I too was in heaven!!

Below is a video Lisa and I worked on this the other day using new tools on our new laptop.  It's pretty simplistic, but hey we're still learning....it's just a little film about Monkey McMaster.  Enjoy:)

(Use the volume button on the video if you can't hear Lisa at the end)

She is resting

Finally after two doses of morphine and 1 dose of antivan, Lisa is resting.  Thanks to all of those who sent up some prayers.

It was quite the stressful scene.  I contemplated video taping so people could understand, but that just seemed cruel to both the viewer and Lisa.  She would have probably kicked the camera out of my hands.  We were warned that one of the side effects would be pain and the fact that they pre-medicate her with morphine should have been enough warning....it's just that it happened so quickly.  They hooked the antibody up to her IV and at the 20 minute mark, she started squirming and stretching her legs and said they hurt, within two minutes she said her neck hurt and she couldn't move her head, within 5 minutes she was screaming that her whole body hurt.  It was awful. 

When the doctor and nurses said she could have "nerve" pain, they said it would be like a case of bad flu or muscle aches.  They also said that the morphine seemed to work nicely with 25 kids whose pain was controllable, number 26 had excruciating pain, I guess Lisa, who is number 27, will go into the excruciating pain group or as she says  "hurts so bad I never want to stop crying" category.  It took about an hour to get her pain under control.  She had two doses of morphine and one of antivan before settling into sleep.  Up to that point she would rest very briefly and then her body would tense, her eyes would bulge open and she would scream.  She was basically out of her mind in pain (I have vague recollection of doing the same thing 13 years ago today when I was in labor with Maranda...but I got an epidural to make it all better!).

She's been sleeping for two hours.  They are monitoring her heart rate, oxygen, blood pressure etc as is protocol when you are on morphine.  The nurse said if she wasn't sleeping she would probably be in pain, she's just knocked out.  I vote we keep her that way.  For the next three days she will get this antibody.  The hope is the pain subsides with each dose, but nobody knows  forsure....guess we will wait and see.

Please keep praying...I cannot even imagine what it feels like to be in Lisa's body right now.

Also...everyone send a big HAPPY BIRTHDAY to Maranda.  She is 13!!!!!!!!!!!!!!

PLEASE PRAY FOR LISA SHE IS IN LOTS OF PAIN

Sorry for short post, they injected Lisa with antibody at noon and within 15 minutes she was screaming in pain despite double doses of morphine.  Pray for her to get comfortable quickly.

She's eligible for study...we're staying on

Lisa had an afternoon of scans today and while she was under anesthetic, I met with the doctor.  Most of the test results aren't in yet so we won 't know if the disease has grown since the last scans at home, butttttt...she had elevated catecholamines in her urine which is an indicator of Neuroblastoma and enough to qualify her for the study.

We will meet with the doctor tomorrow to get test results back and to look Lisa over one more time.  She will them be admitted as an "inpatient" to the hospital tomorrow night. (We've been outpatient this week and staying in one of their facilities which is pretty much a hotel).  She will start receiving antibody treatment on Saturday morning and will get it for the next four days, they will release her from hospital on day 6 and the doctor will see her on day 7, if she's in good shape we get to go home.  Approximate ETA will be next Friday or Saturday!

We will miss Maranda's birthday on this Saturday so be sure to send her lots of cheer to make up for her mom and sister missing out...she is a real teen this year...13!!

Lisa's teacher sent us some pictures of "Lisa Monkey" who is sitting in Lisa's chair at school why we are gone. Lisa and I are working on putting together some pictures of "Monkey McMaster" to post so everyone can see what we are up to here.  Lisa and Monkey McMaster are part of the "Monkey in my chair" program and they help to keep Lisa and her classmates in touch.

We hope to get out and go someplace tomorrow before we are on lockdown for 4 days, lots of things to see and do, but not an easy way to get to them with no car.  We've been warned that outside of St. Jude's gates, you have to be careful...how bad could it be?  We live near Detroit.

So, we will see what tomorrow holds.

Weather here is still 90...I miss home, but not MI weather!

Testing, Testing, Testing...

Eye exam...check,  Echo...check, EKG...check, MIBG Injection...check, CAT scan....check...just lots of testing today, but nothing new or different from what we've done back home; things went pretty smoothly.

Lisa has been doing well.  Able to keep up her spirits...it's only our second full day here, but we are starting to get bored.  We're doing our best checking everything out, but not a whole lot to do in the evening.

One more day of tests and then we will meet with doctor on Friday to see if we qualify for study and are staying longer or if we are going home.

Long day at St Jude's

Yesterday, after the frightening escalator experience, we had a great flight and didn’t experience our next snag until after we landed and we tried to locate the shuttle for St. Jude. We were told that they would be tracking our flight and someone would be waiting for us. They neglected to tell us that the shuttle constantly runs back and forth and that the wait could be up to 20 minutes. I tried calling the two numbers I had been given, but no answer, it was a holiday. After waiting for over 30 minutes, I was contemplating getting a taxi when the shuttle driver came strolling through. The ride was uneventful. They dropped off our luggage at the Grizzly House and then took us to the hospital. It was close to 8:30 pm (9:30 Michigan time) when we arrived at registration. We waited 20 more minutes for the registrar to finish with the patient in front of us. Once we were registered we were sent to the med room to get Lisa’s vitals taken and meet with the doctor on duty. Another hour of time slowly ticked by but finally blood pressure, temperature, height and weight were recorded and the doctor declared us healthy enough to stay in the housing. It took only a few minutes to check in, 30 seconds to order a pizza and 20 minutes later and around 11:00 we were feasting on Dominoes. Lisa filled her belly and went to bed.


We were given a whole days worth of appointments for today, starting with meeting the doctor at 8:00 am. It was rough getting up, but we did it and were there 10 minutes early. We checked in, were pointed in the right direction and went to the clinic. After sitting there for an hour, I asked receptionist if an hour wait was normal. She assured me it wasn’t, but with yesterday being a holiday things were chaotic. They moved us into a room 10 minutes later. We met with a nurse and the pharmacist and child life stopped by. We waited in the room until 1:00!! Lisa actually fell asleep and took an hour long nap. Doctor Navid introduced herself and explained the tests that would be done throughout the week; they are all pretty standard tests and Lisa has had them done at Motts in the past. St Jude’s needs to run all of their own test for baseline information if Lisa goes on the study. Once we were done meeting with the doctor, we went to have labs drawn. At this point, the schedule we had was totally void and the clinic sent us to lunch and moved some of our “meet and greets” until tomorrow. Lunch was fine except for Lisa lost her stuffed monkey and lamb. This is the second time monkey has gone missing since we got here; he really is up to some monkey business! Last night he stayed behind on the shuttle and turned up at the hotel compliments of the driver. So, today, to keep him safe, Lisa asked that they put a name band on him. Well, it’s a good thing because when he went missing at lunch his name turned out to be helpful. After retracing our steps and asking patient registration and security if he turned up, Lisa and I took the opportunity to roam the halls of the hospital looking for monkey and lamb. As we were wandering around we heard an announcement “Attention all family and friends, we have a new family here with us today and they have lost an important part of their family. Please look around you and your spaces to see if Monkey McMaster is near you, if you find him please bring him to security.” The announcement brought a smile to my eyes and Monkey McMaster turned up with lamb. They had been hanging out in the cafeteria. Good thing he had a name band on! Monkey’s disappearance not only gave us a good self-guided tour it also set us up with a good icebreaker. Signing into our remaining appointments for the afternoon, when a nurse saw Lisa’s monkey, she would ask “Is that the Monkey McMaster that was missing?” Lisa then would charm them with her smile and tell her story including that monkey and lamb were in time out for not staying with us.
Somehow we mentioned to finish up with our appointments an hour early. I think it was due to the fact that all the workers were tired and worn out after a long day of catching up from the holiday. Rather than go through minor details with us they moved the appointments to tomorrow. A good thing, Lisa and I were both tired. We got back to the hotel just before 5 when they served a turkey dinner. We ran into Kansas and her Mom who we met on the shuttle yesterday. We ate dinner with them and then Lisa and Kansas played briefly afterwards. Kansas loves babies more than Lisa…if that’s possible! It was a short play date because Lisa was tired. She was asleep in bed by 8:00 here. It will be an early night for both of us, it was long day, and while tomorrow’s appointments start a later in the morning, the day is filled with exams and scans so it’s sure to be tiring.
Hope everyone is well in MI and all the kids had a good first day at school. Maranda, Thomas and Christina sounded pretty excited as they shared their schedules and what friends were in their classes. Loving the weather here…still 90 degrees….hope we get some time outside to enjoy it. Now, it’s off to bed!

We made it to TN, in one piece...sort of

Well, we made it. We got off to a bumpy (literally) start. We arrived at the airport, sailed thru security at Detroit Metro and proceeded to the escalator that is right there. Lisa was a few steps ahead of me and assured me she was okay to go alone. I was about four steps behind her dragging the luggage. As I got on the escalator I noticed that she did not have her feet on the platform correctly. Just as I called out her name, the escalator became stairs, her feet slipped off the stairs, and right before my eyes, she tumbled head first half way down the escalator. I was shrieking her name trying to get to her but with the luggage unsteady behind me; I was having a hard time making progress. I was afraid if I moved forward the luggage would tumble over and knock me down or go over her. Somehow she managed to catch herself and straddled askew over three of the stairs. I believe a security guard appeared behind me freeing me of the bags so I could grab her and one man came to the bottom of the escalator to grab Lisa's back pack...not even sure how that came off. It all happened in under a minute I 'm sure, but it seemed like everything was in slow motion. Once we made it down to the bottom, Lisa seemed more panicked than hurt; it could have been from my screaming. Once I gave her a hug and we took some breaths we were able to assure the security guard we were okay and didn't need any medical attention or to file a report. Lisa never even shed a tear. We calmed ourselves and headed towards our gate. We had walked a bit before Lisa told me her leg hurt...she pulled up her pant leg and it was pretty cut up (imagine that). She assured me she could keep going so we continued to walk to the gate. Of course, our gate was all the way at the other end of the terminal, but I was too shook up to go back up and take the tram so we walked the entire way. Lisa, the trooper, tough chick made it the whole way with a smile on her face.
Once we got to the gate, I gave Lisa a thorough once over....OMG! Her one leg was scrapped up with skin hanging, her belly looked like she'd been attacked by a raccoon or a rake and had red lines all over it and the area around her port was scrapped and bleeding. She had one little scrap on her lip, but somehow had managed to save her face from damage. I asked the attendant at the desk for a first aid kit and she said they didn't have any but they could call EMS. I said no, it wasn't that serious, I just wanted some Neosporin and band-aids. She offer me hand sanitizer....hellooooo...that's like rubbing alcohol. I asked a transport person going buy if they had a first aid kit, he said no and made some calls. He informed me that someone would bring them. That someone was the EMS....nice. Apparently they are the only ones in the airport who have Band-Aids. They were very nice and dug into their HUGE medical backpack to get the supplies to clean Lisa up. They were impressed at how composed she was after such a tumble. They asked if we wanted to go the hospital to get checked out. I smiled and said "We are going to the hospital, just as soon as our plane lands in Memphis. Thanks!"
It was pretty horrific and keeps playing thru my mind. The airport seemed so empty at the time and I can remember looking around for help as I was yelling and being surprised at how only a few people stopped, but only one person came over to help. Maybe they couldn't see her on the stairs or something, but all I could think was someone grab her, catch her. I cannot believe how lucky we were....she could have broken her neck...but she didn't, and we made it and we're here and she's fine, happy and ready to go. What a trooper. Go Princess Lisa!

Expensed paid trip to St Jude in Memphis, TN

The call didn't come as a total surprise, but the timing was a bit shocking.  We got the call from St. Jude on Friday after 4:30 saying that they had scheduled Lisa to meet with their doctor....on Tuesday!! We fly out on Monday.

The good thing is St Jude covers all the cost...they take care of the airplane flight, housing and food for both Lisa and one parent.  The bad news is that Lisa will miss the first days of school and I will miss out on my 3 other kids starting school.  I know for some parents this is no big deal, but for this Mom, it's heartbreaking.

I'm never really  happy when they start school...I know, I'm crazy....but what can I say, I like having my kids around, having carefree days with no homework and the long days of summer.   School means more work, more schedules, shorter days and winter is coming.  The first day of school is sort of my initiation back into reality.  The first week of school traditionally is for helping them get ready and get their supplies,   learning about their classes and meeting their teachers, getting them adjusted to their new schedules and helping them figure out how to get off on the right foot and make this a good school year for the next 9 lonnnnnnnggggg months until summer.  My not being here is going to be an adjustment for all.

Maranda also quickly assessed that we will miss her birthday next week.  Again, something I've never done!  So feeling a bit guilt ridden and trying to get everything I was planning on doing next week done in two days has made this Labor day weekend one filled with "labor". 

As for Lisa, she looks great and is feeling fine.  She's a little disappointed in missing out on school, but we've been playing up the adventure we are getting ready for and she's game.  This first week at St. Jude will be full of tests and scans to assure she qualifies for the study.  There is some concern that she won't show enough cancer to qualify.  Mike is hoping the scans show nothing meaning Lisa would be in full remission.  Why this sounds nice, the reality is she did have some cancer at last scans and in most cases if there is some, there will be more sooner or later...so if there isn't enough now to treat, there most likely will be more in a few months and at that time the study might be closed or full. 

If Lisa does qualify for the study we will stay on for a second week at St Judes. She will receive an antibody treatment for four days.  You can read more about this study here.  I'm not sure once she is on study if she stays any extra time after the treatments or if we would come home to Motts and let them do follow up.  I do know the treatments are administered every fourth week so we would go back down to St. Judes once a month for the next 3-4 months.

So...I'm off to finish the school shopping, get Maranda early birthday presents, pack, clean house, pay bills, yadayadayada.....please continue to pray...this truly is a situation where God has the best plan.

Lisa is 6 today!

Ahhh...to be six again....Lisa raced into my room this morning and announced loud and clear "I'm six today!!!".   Yesterday at her hospital visit, the nurses and doctors gave her a few gifts and made her a happy birthday sign.  She carried it proudly in front of her and when she figured out that people were reading it and wishing her happy birthday, she carried it even more prominently.  She even got so bold as to shake it at a few people as if to say...hey, it's my birthday, wish me a happy one.

Enjoying Life

Sorry to be so sparse with posts lately.  Those of you that know me, know that once I'm in Topsail I cease to think about anything else.  It's been wonderful down here.  Mike's family and my nephew Ray was with us all last week.  Thursday, my brother Frank flew in with my niece Amy.  McMasters left Saturday. Frank took Ray and Amy home Sunday.  All the kids have had a great time.  It's interesting to watch the oldest nieces and nephews interact with their cousins and remind them of what they were like when they were little.  It's amazing to realize how much they've all grown up.

Now that all the cousins are gone it's just us and Grandma.  Maranda is already begging to go home early. Lisa keeps running around saying "We have the whole house all to ourselves!!!"  She is doing well, she is prone to taking long naps each afternoon, but so is Mike.  We've heard from our U of M docs and once we get back Lisa will be doing some testing which will be given to St. Jude to see if they will accept her for the antibody study.  If she's accepted, she and I will most likely be going to Tenn early September.  That will truly be a different experience for us all. 

Well..back to the beach...hope everyone is well and enjoying their last bits of summer.

A brush with fame

Things have been going well.  We went to MI Adventure last weekend with my sister and nephew Jacob....I'm still waiting for them to send me photos so I can post them. We dropped the older three off at Special Days camp before Mike, Lisa and I headed home.

It's been pretty quite this week, but it's going by fast!   Lisa misses her sibs, but other than that seems to be doing fine.  She's a bit more tired lately and her appetite comes and goes.  I try not to think anything of it, but sometimes it's hard not to.

We are getting geared up for our 2 week vacation at Topsail with Mike's side of the family.   We continue to be on the waitlist for a protocol that could open at St Judes or a different protocol that could open at Motts.  IF either of these opened while we were on vacation, it could be problematic....once they studies open, scans have to be done within 5 days.  That means we either cut our vacation short or bypass the studies.  I'm not sure what we will do if faced with this conflict.  There is no hard evidence that either of the protocol would make a difference and cutting the vacation short seems like we could be cheating Lisa out of a family memory, but not doing a protocol could cheat her out of life.  I truly have no control on this one and hope God will see that the timing works out.  While try not to dwell on the issue, it is definitely stressing me out.

On another note, Lisa had a brush with fame tonight.  She got to join some other kids from her Kids Kicking Cancer karate class to film a public service announcement with Gerard Butler.  While he's not Miley Cyrus or Demi Moore -the stars that the kids got to shoot the announcement with on Sunday while we were out of town:(- Gerard was very nice and spent a lot of time with the kids before and after the shooting.   I've attached an amatuer clip I took from my phone....it's a bit long, but the whole process was a lot longer!  The film Gerard is in town shooting got behind schedule so we waited over an hour for him to get done with that.  We did get to peak behind the scenes and all the crew was very nice.  Once Gerard was done filming for the day, they shot the public service announcement.  There were many retakes and we were snapping pictures like crazy...those will be on shutterfly soon. Lisa, being bald and toothless, got the front and center spot right on his lap.  It was very cool! Lisa was awesome and very much the professional sitter.   We are so proud of her.