Tuesday, April 28, 2009

Mike here again: Sorry for the lack of communication but it most likely means things are going well, as they seem to be. Lisa is now officially a skinny kid. She began a year ago weighing, I'm guessing here, 45 lbs. Today she weighed 37 lbs. and she's probably 4 or 5 inches taller. She's gone from one end of the chart to the other. Not to worry though because she has a lot of energy and her appetite is growing this past week. Chrissy 6 years older only weighs 52 lbs and Tom's kinda scrawny too now that I think about it. They must have the thin gene we all hear about. They really do have access to plenty of food. Really. And they say they like my cooking....

I took Lisa in for a few follow up appointments today. Six "pokes" altogether, three under the skin to test for certain reactions, two getting blood, and one during the CT scan. There were a few tears and after each she apologized to the nurses for saying she hated them. One nurse commented that Lisa made her earn her money today and without missing a beat Lisa said "Well that's your job". There's nothing dulling this girls wit to be sure. We sure missed having the central line in today to alleviate the need for all those pokes. We go back on Thursday and she'll have to get an IV placed to start things off. Thursday's procedure is aphereses to collect stem cells again. Once the IV is in she'll be sedated and another line, a big line, is placed in the artery in the leg. Once aphereses is complete the lines are removed. She might end the day with a new central line, a "port" this time just below the skin in the chest.

On the horizon is Accutane Therapy and Monoclonal Antibody Therapy. These are relatively new treatments added to the bag of tricks that can be thrown at this disease. It's hard not to get complacent when Lisa seems to be doing so well, but in truth stage 4 Neuroblastoma is a tough adversary and the plan is to throw everything we can at it.

Your prayers and positive energy continue to help. Thank you all for that.

Wednesday, April 22, 2009

Wednesday - 4/22

Today is/was Lisa's last day of radiation. Woohoo! Once again she's been a model patient. Granted the sessions are pretty quick, some only lasting a few minutes, but she lays back and doesn't move. She's a pretty cool kid. At home she's really starting to get back into her groove and it's great to see and hear. Her appetite could be a little better as she is down about 3 lbs. since radiation began but on Monday she ate more than I've seen her eat in a long time. She's hungry a lot but just can't seem to get much in that ity-bity stomach of hers.

Saturday, April 18, 2009

Saturday 4/18

Mike here: Lisa arrived home yesterday as we hoped she would. She still looks great and although she is still on antibiotics the infection appears to have gone. Yeah! Her line was removed so we're free to go swimming for the first time in 10 months.

Thursday, April 16, 2009

Thusday 4/16 Update

Mike here: As of this writing Lisa will be released sometime on Friday after her line is removed. The "line" that Lisa has is a Broviac catheter. It's a long, hollow tube made of silicone, with an opening called a lumen. This catheter is commonly referred to as a central venous catheter because it is inserted through the chest and into the large vein leading directly into the heart. This line is used to administer medicines, IV, or draw blood and such and almost eliminates the need for "pokes".

The line is being removed because the consensus is that that is where the infection is. She's had this line, her second, for probably around 6 months so we feel we've done pretty good with it. Next week she'll have a different type of line placed below the skin in the chest. It's called a port and while it will require less maintenance, it will require a needle to access it. Since the port is just below the skin it should be much better than trying to access a vein every time.

So... good news once again. All those prayers and positive are really doing the trick. Lisa seems to be doing great and remains unfazed by all this. Since we're on Spring break this week, Maranda, Thomas, and Christina are here today and are pictured here playing Wii.

Wednesday, April 15, 2009


Crap....6:45am call from doc...that's not good. Lisa cultures came back with bacteria. We have to take her to ER and have her admitted. I feel sick. Let's hope we've caught whatever it is quickly enough and that they can get things under control....she's still in her 100 day window after transplant, so even little things can blow up into something huge.

Let's hope for the best....and PRAY!

Tuesday, April 14, 2009

So Far So Good

Well, so far so good. The fever passed and Lisa labs looked good today, so we're still outpatient. Yeah. Her radiation treatment and vaccine shot have taken a lot out of her today and she spent most of it sleeping. She is definitely a bit more nauseous....hopefully we can all get a full nights sleep tonight and get back on our game.

I finally figured out how to add an email subscription to the blog. For those of you who would rather have updates mailed to you vs having to remember to check the blog, you can submit your email in the box on the right. When we make any updates, they will be automatically emailed to you within 24 hours.

3:40 AM....freaking out

Just before 3 am, Lisa woke us up saying she didn't feel well. I touched her head and told Mike she felt warm, he touched her head, grunted and rolled over. She ran into the bathroom to get sick and then ran out again saying she was fine. I took her to the living room to sit on the couch and hunted around for a thermometer, questioning whether it was stupidity or cockiness that allowed us to leave Lisa's paperwork, "as needed" med basket and good thermometer at the other house. I finally found the slowest working thermometer in the world and promptly put it under Lisa's arm.

102...sh!t ...that's not good, maybe I had in the wrong spot under her arm. I stuck it under Lisa's arm again and waited for a good minute as the crazy thing beeped every 4 seconds to indicate it was working....finally triple beeps and the number is....102. SH!T!!! Okay, maybe it's broken...I take my own temperature. Slow beeps, another minute goes by...finally...97.8...arghhhhhh! I go shake Mike awake..."You need to get up, are we supposed to call doctor at 100.5 still or at 101? Lisa's temp is 102...she could have an infection, should I call the doctor" Mike rolls over and mid snore says "Just wait a little bit, it will go down, she's worked up". Yah..right...."Hold this under your arm"I say and stick the thermometer under Mike....the clock ticks...and Mike's temperature reading is 98.1. .. crap. Mike mumbles"Lisa always runs higher when she's tired" Uh....not 102 high. I go get Lisa and dump her in bed with Mike..."feel how warm she is". He tells me to go get her a cool washcloth. When I return, Lisa says she has to go to the bathroom. I help her up and she goes to the bathroom and as she's washing her hands starts to throw up. I call for Mike for a little help. Once we get her cleaned up Mike takes over the temperature reading....her temp comes down a little bit with water and cool cloths. Of course the only tylenol I have in the house expired in 2005...that's ok, I'm too nervous to give it to her anyway because I don't want to mask her temperature. I ask Mike to take her temp again..it's dropped a bit...100.7....good enough for him. They both roll over and go to sleep, I pull out the computer and blog.

This is freaking me out....one part of me wants to run and call the doctor because her temp spiked. The other part of me has no desire to drag her into the ER and sit around for 3 hours in the middle of the night to get her admitted (which is standard protocol for cancer kids with a fever). One part of me is saying I'm just being a worry wart, the other part of me knows how important it is to get antibiotics running if this is an infection. One part of me really believes it's just a side effect from the radiation, and the other part of me knows I should be down on my knees begging God to please not let this be an infection.

So at 4:06 in the morning and now a temperature of 99, I hope that all the prayers for Lisa are still flooding the heavens and that we don't have to become visitors to Motts 7th floor any time soon. Guess I should try and get some sleep, Lisa and Mike seem to have things under control.

Monday, April 13, 2009

We're still here!

Hope everyone had a wonderful Easter....ours went well. Lisa was up by 7:30 and had found 1/2 her eggs before Mike and Chrissy joined us at 7:45.

Lisa started her second week of radiation. Even after a 2 hour wait (they had problems with some of the machines) she still did a great job. So far no side effects except for a little nausea that so far has been very controllable. Her eating is on again/off again and she did lose another pound so we are still encouraging to eat everything and anything any time she wants...boy wish we all had that luxury!

Her sense of humour is still intact...tonight when she saw me getting her medicine ready she ran into her room. When I called for her, she called back and said "I'm not here...leave message." Ha, Ha, very funny....

Stay tuned for more updates!

Wednesday, April 8, 2009

Second Day of Radiation Done!

Lisa is doing an awesome job....she's laying real still during her treatment and hamming it up for the cameras that we watch her on. One of her oncology docs emailed me to see how she was doing (how awesome is that?!) and when I emailed saying she was doing her radiation without anesthesia...this was the docs response:

"what, are you kidding me?? Without anesthesia??? She is such a good kid....Most kids radiation is 20 minutes or less and most of them are sedated daily!!! She really is good."

I also want to share with everyone some wonderful news about Thomas. Last week we got a letter from the school informing us that Thomas had been selected to receive the "Turnaround Achievement Award" for his school (to read the letter, click here). This award recognizes children who have made a significant turnaround in their lives through academic performance or social interaction. It is only given to one child at each elementary school, so it is quite the award and we will be going to luncheon next month to see Thomas get his award and celebrate the achievement.

Wow, I can't tell you how proud Mike and I feel. We really do have exceptional kids...hmmm...or maybe, they have exceptional parents!!;) Which ever it is, we all are truly blessed.

Tuesday, April 7, 2009

Happy Forever Family Day

Today is our one year anniversary of being a forever family. Thomas, Christina and Lisa officially became McMasters on 4/7 of last year...hurray!

Both Lisa and Moms doc appts went well today. Lisa did her first radiation and she laid still the whole time no problem listening to music...princess songs of course!

I accompanied Mom and Dad to Mom's appt and met with the surgeon who will do "another scoop" on her breast to make sure they got all the cancer cells. They will also check her lymph nodes. If the cancer has not traveled to her lymph nodes she will most likely only require radiation. Her surgery is scheduled next week. If everything continues as scheduled, Lisa should be finishing up her radiation right about when mom is starting.....I'm sure Lisa will be a very capable teacher!

Monday, April 6, 2009

Friday was a long day at Motts. The appt with radiation to make Lisa's "mold" was at 9:30. That was pretty timely and went very well. We were in a new building so things weren't as familiar to us, but Lisa didn't seem to notice. The doctor came in to talk to us. At this point in the game, things are as good as they can get. While they won't say she is cancer-free or in remission, they do say "at this point in time, none of the tests is showing any active cancer cells". That's pretty good for neuroblastoma and the doctor said that while he didn't want to get our hopes up it's great that Lisa had made it this far. Because there were no active cells evident on the scans, they are only going to radiate the area where they did surgery....Lisa's stomach. So in one sense, that's good, because it means less radiation exposure for her, but on the other hand, you hope there's not some roaming cells that we could be zapping at the same time.

Once the doctor was done talking with us, we went with some nurses and techs to get Lisa's "mold" done. It was quite interesting. It was done in a room with a cat scan machine which Lisa is very familiar with; Lisa was doing fine until they started mixing up some "goo". They offered to let her shake the mixture and she said "no way". She got a little anxious and tried to get off the table but the nurses and I assured her everything would be okay. They were a pretty fun group and used a lot of distraction techniques to help Lisa lay down. The whole process took about 20 minutes and actually was pretty cool. Lisa laid on the catscan bed on top of a clear, plastic trash bag. They poured the "goo" inside the plastic bag so it didn't even touch her. Once they had the "goo" poured, they put a warm blanket on Lisa and just chatted away with her. As I stood next to her and watched, I realize the "goo" was rising and it was forming a mold around her. She had to have her hands above her head so they let her hold a doll up there...the "goo" grew around the doll as well. I found it interesting that the mold felt warm and I remember one of the Child Life specialist telling Lisa she would feel like she was laying in a warm bath. Besides not being able to move, this didn't seem like such a bad thing.

Once the mold was completed they needed to take a few cat scans of Lisa. We explained to her that I would be on the other side of the window while they did pictures. They had a microphone that I could talk to her with, so I told her that the queen was watching and could see if she laid still in the machine and then we played hide and seek while the table moved in and out. After that, the mold was done....it looked like a big styrofoam shell of Lisa and baby doll. The nurse took us over to see the radiation machine which he told Lisa was a rocket and that she would be driving with her mind. We got to sit on the table and go up and down and Lisa got to use the controls to move the machine around.

After radiation, we went for an MRI...they were running over 2 hours behind. Ugh. It was 11:30 and Lisa hadn't eaten all day because she had to have anesthesia. That meant we had another 2 hours to go without food. She did pretty good and only started to fuss after we got called into pre-op and we had to wait some more. She had just started to dose off when they finally got around to her. We took her back to the machine and they put her out and did the MRI. She was quite the bear when the test was over and she was coming out of anesthesia. She usually comes out of anesthesia with a nasty attitude, tack on the fact she didn't eat all day, it was a double whammy...she was screaming and yelling when she woke up. We finally left there at 4:00 and I stopped at a grocery store on the way to the lake and let her pick out any food she wanted.

Overall, she seemed pretty comfortable with everything. It will be interesting to see how she does tomorrow...it's her first actual radiation appt and they said first appt could require her to lay still for up to 45 minutes, we are all hoping she can do it without anesthesia but we'll see. That's a long time for anyone to lie still.

Thank you to all of you who said some prayers for my Mom. She has gotten most of the test results back and as her radiologist said "if it has to be cancer, this is the best circumstances....the only better news we could have gotten is that she doesn't have breast cancer" She is stage 1 and had three very small lumps that were well differentiated and easily removed during her outpatient surgery/biopsy last week. She will have another outpatient surgery to remove any lymph nodes that are cancerous... which may be as few as one but possibly two to four based on what they now know about her cancer. So far, all the other test have come back negative and there is no reason to think her cancer has spread anywhere else. She will need to under go six weeks (five days a week) radiation treatment. She may get fatigued during the treatment cycle but other than that no other side affects are expected. Timing looks like she will probably start her radiation after Lisa finishes with hers....so if she needs any pointers, I'm sure Lisa will be happy to give her some!

Friday, April 3, 2009

Here's Lisa with Dr. Harris on Tuesday. One of Lisa's favorite doctors, to say the least.

Wednesday, April 1, 2009

Oh boy...so much for enjoying our time at home.

So Monday was quite the day. It started out with an 8:00 a.m. meeting at the school re:Chrissy. It went very well and seems like Christina is finding her way and starting to be able to focus much better and work independently. The 8:00 am meeting was followed with a fast and furious car ride to Motts to meet up with Mike and Lisa for the 9:00 radiation appt (the time in the car was spent on cell phone trying to get Maranda's school to release her to Grandma even though Grandma wasn't on the emergency card).

9:00 appt with radiation went well, but was a bit of a blow to my "we're living like normal humans again" mindset...surprise, surprise, they want to get started with radiation next week. I naively thought that we'd be hanging out enjoying the spring weather as we waited for Lisa's vaccine study to be done and then we would start radiation which I just as naively thought would be 1 day a week every few weeks or something completely low key.

Yeah...right...if the scans go as docs hope this week, we will start radiation next Monday and will go M-F everyday for 2 weeks and then 2 days the third week. (Good thing the princess trip got cancelled, unfortunately our plan for a 4 day weekend over Easter break of visiting friends up North is looking pretty dismal as well.) The hope is that Lisa's scans come back pretty clear. If that is the case then Lisa will have her stomach area radiated (initial starting place of the cancer and where she had surgery) and probably her leg where there is residual cancer and possibly her brain (where there has always been a questionable site that we go back and forth about). The hopes is that they don't have to radiate brain. It's pretty much a crap shoot given the type of cancer she has. In reality there are many places they should radiate, but they can't because that would become a total body radiation and involve another Bone Marrow Transplant...not something they want to put her through because of the amount of stress it puts on her body. Lisa's cure is so dependent on prayer, miracles, and on-going research. Sadly, the treatments she gets for neuroblastoma that may cure her also could cause many other problems....like another form of cancer, liver failure, brain problems...it's daunting.

After the radiation appt, it was too the lab to have blood drawn and to the clinic to do follow-up with doctors and get second vaccine. Mike stayed with Lisa while she got her vaccine (which smells like creamed corn...ugh) and I took Maranda for her follow-up with neurosurgeon. Both girls did quite well. Lisa got her shot and Maranda's doc said the healing was going well and he wouldn't need to see her for another year. He had no input or opinion on the scoliosis/brace issue and referred us back to the Peds Ortho doc.

I dropped Maranda with Mike and they waited for Lisa to get her contrast injection while I headed into work for a few hours.

At 9pm another stress was added to our load...we found out last night that they are 90% certain my mother has breast cancer. She too will be going for scans this week to determine what is going on....it's a shame I can't convince my parents to go to U of M so Lisa and Mom can do their testing together.

Part of me thinks I've become a bit immune to hospitals and cancer...I pretty much have a non-reaction...and just keep doing what needs to be done. Not sure if that is immunity or survival There are times that I wonder what I have done to have so many challenges placed in my path. I wonder have I finally hit bottom and will my reserve of strength give out? I start to wallow in self-pity, but then realize, there are still many others out there who have it worse than I....like the foster parents next to Lisa and I today that have 2 "shaken syndrome" babies, 2 cerebral palsies children and 2 kids on ventilators in their home. It could be worse...much worse...but then it could be better...and right now I really miss the "better" easier way of life we once had.

Please keep us and my mom in your prayers.