Thursday, September 30, 2010

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!

Wednesday, September 29, 2010

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.

Sunday, September 26, 2010

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!

Wednesday, September 22, 2010

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!

Saturday, September 18, 2010

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.

Wednesday, September 15, 2010

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!

Monday, September 13, 2010

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!

Saturday, September 11, 2010

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:)

video
(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.

Thursday, September 9, 2010

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!

Wednesday, September 8, 2010

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.

Tuesday, September 7, 2010

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!

Monday, September 6, 2010

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!

Sunday, September 5, 2010

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.