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.