Still not easy

Lisa ended up being admitted Thursday night because they weren't able to get enough bone marrow collected and needed her there Friday morning to finish the collection. Docs also wanted to keep an eye on her cold.


It has been close to 8 weeks since we have had to stay at Motts. After all the time we've spent here, I figured this stay would be no big deal, it would feel pretty routine. I was surprised as I walked down the hall to relieve Mike how anxious I felt. Feelings of dread, fear and uncertainty came surging through me and I realized that I didn't want to be here and I didn't want my daughter to be in this situation. The severity of the whole thing raced thru my head...this is a wicked disease with no proven cure and a very low survival rate. The treatments, while helping, have no guarantee of success. I feel powerless. As a parent, I can do nothing to help my daughter except to keep subjecting her to treatments which make her feel awful but are the lesser of two evils. My feeling of powerlessness intensifies when I find out that a little boy who had been with us in the hospital during most of our stays was now back on the floor.


When we had first met him, he was recovering from a complication that had caused a head bleed and a stroke. He too is a neuroblastoma patient, but at the time we met, he was cancer free and working to recover from the stroke. We saw him and his family rally. Lisa and I were there the day he regained his speech after months of silence. We were there as he gained strength and started to play games with his physical therapist. We were there for Thanksgiving and all celebrated together. We were there when after nine months of being in the hospital, six of which he was cancer free, he was released to go home. It was the day before Maranda was released, three weeks before Christmas.


Now, he and the neuroblastoma were back on 7th floor of Motts. He had a short six months of remission, most of it spent in the hospital recovering from his stroke. His family works up the courage and strength to fight...again. This is the second child with neuroblastoma we've met who has relapsed. Both the same age as Lisa and with the same diagnosis. It is a bitter pill to swallow. It is hard to stay focused, it is hard to stay positive, it is hard to believe. But, that is all we can do...because what is life without hope? Again, I must remind myself how lucky we are that God has given us this reminder. Life is precious and we should not take it for granted, every minute should count and not just because you or a loved one is fighting cancer. So, go on we will and I will search and grasp for that little ray of hope.


I think of how recently I said the statistics were working against us. The odds of having a child with this type of cancer, the small percentage of children with scoliosis caused by a chiara malformation, the 1 individual out of 16 whose vaccine was contaminated....I think of that and wonder if that is our ray of hope....maybe, just maybe, we will be a minority once again, but in a good way. Maybe, Lisa will be 1 of the few who beats neuroblastoma. We continue to hope and pray.

As long as her cold doesn't get any worse and there are no problems with the vaccine, Lisa is scheduled to be admitted to hospital on Monday 2/16 for chemo followed by bone marrow transplant. She will be in the hospital for a minimum of three weeks. So far all of her treatments have helped to shrink the cancer....this step will be another major attack against the vicious cells. It will be tough on Lisa, but we do what we have to do and we hope and we pray.

Thursday the 12th

Mike here: I know some of you were looking for an update today so here is the synopsis of my day with Lisa.

7:30 AM- 9:00 AM - Line placement in left groin area for apheresis (stem cell collection)
9:30 AM - 12:00 PM - MRI of head and recovery.
12:30 PM - 4:00 PM- Apheresis (she finally gets to eat and drink)
4:30 PM - Up to the 7th floor of Mott to wait for the results of the collection... and wait...
About 8:00 PM we get the news that we 'only' got about 2 million cells (hate to be the one who had to count them) and we needed 4 million.

So Lisa was admitted for the night and will collect the rest tomorrow. She'll definitely be back in and admitted on Monday for chemo and bone marrow transplant, followed up by the vaccine trial.

As in the picture taken just before 7:00 AM, Lisa braved it all as we've become accustomed to with her infectious smile and charm.

The pessimist's viewpoint

Mike always puts such a positive spin on things....here's what I'm thinking...."good golly, cut us some slack, I need a vacation in a bad way". I feel like I'm up to my ears and fingers in phone calls and emails.

Mike described the hiccup...bad vaccine....small chance of that happening, but that seems to be a pattern for us recently. So, after phone calls and emails...below are the options the doc outlined for me:

1. Proceed with BMT now (standard approach), do not try vaccine or MIBG treatment

Advantage: no delay
Disadvantage: With aggressive NBL, relapse risk is high

2. Collect stem cells for vaccine generation, proceed with transplant immediately after collection complete
Advantage: gives her a chance to do vaccine trial
Disadvantage: delays BMT in order to do the collection, may still not be able to generate vaccine (although contamination twice is not very likely)

3. Change plans to MIBG based BMT
Advantage: guarantees getting something extra to fight NBL
Disadvantage: MIBG may not be available at this time, not sure if she is eligible for that trial.

Again, this is a very aggressive cancer and there is no known cure that guarantees a long life...but we do what we can.

The positive side as I see it is that we have an awesome team of doctors (that keeps expanding) and they are all working closely with us to make the best decision.

So, as usual, keep the prayers coming!!

Do Over

Mike here: I arrived at work and got the call even before I sat down. It's the surgeon that removed the tumor from Lisa's abdomen... [inhale deeply] Turns out the vaccine that is being made for Lisa has been contaminated with a bacteria rendering it useless. That's the bad news. The good news is that they still have enough of the tumor to try to make another vaccine. Yea. However they don't have enough white blood cells (or stem cells - I feel like I keep getting them mixed up) So, she'll need to go through the apheresis procedure again. That procedure requires an uncomfortable IV or catheter in the leg for a few days.
So that's the latest as of this morning. We've a lot questions and we'll get those answered in the next day or so. I suspect this will all work to our advantage somehow. Keep your fingers crossed. We'll update soon.

Another week off from Motts

Well, we got good news and some bummer news. The good news is that the spots on the lung did not appear on the x-ray, so we don't have to worry about that. While they were anticipating on admitting Lisa on Wed, they determined they need another MRI of the brain to measure the tumor there. This is the same tumor that we never realized existed until Oct last year when they told us it shrunk. It doesn't seem to be a big concern, they just want to get a baseline measurement so they can compare it to Oct's tests and future tests.

They've bumped the admit date until next Monday 2/16 which is also good news. It means we get another week off AND Lisa gets to join us in seeing the Lord of the Dance production this Sunday.

The bummer news is....we will have to reschedule our Rainbow Connection/Make a Wish trip to see the princesses in Disney. We had just gotten confirmation for April, but with the date changes of Lisa's transplant, there is no way she will be able to travel by then. Once we've completed this transplant, we will need to be very careful and make sure she isn't in crowded areas or exposed to anything for at least 100 days. She will be making frequent trips to the hospital for testing and transfusions as necessary, so traveling is out of the question for a while.

So, while it's not the end of the world, we are all a bit bummed that the Florida trip has been postponed. We've all been looking forward to it...Lisa counts the days....and it was really lifting our spirits...now, well, I guess we just start counting over.

Turn up the prayers!

It is early in the morning, I do not feel well, and I cannot sleep. My cold makes it hard to get comfortable, my mind whirs with each toss and turn. While things have been going great, a bit of doubt and fear begin to seep into my mind as I become more awake. The "what-ifs" suddenly come on full-force and I find myself at the computer trying to eradicate the demons in my head.

Things have been going so well, what brings on this onslaught of fear? I think a combination of actually getting an "admit" date for Lisa and some inconclusive information on Maranda may have been the culprits.

They have scheduled this Wed 2/12 as admit date for Lisa. While we know the routine and are familiar with the setup, the reality comes rushing in that, as one source stated, "bone marrow transplant is a debilitating experience. Imagine the symptoms of a severe case of the flu - nausea, vomiting, fever, diarrhea, extreme weakness. Now imagine what it's like to cope with the symptoms not just for several days, but for several weeks. "

Great...I'm the person who is puke-phobic...yet, for the greater good, I must subject my daughter to this treatment. I'm not a fool, I know there really isn't another option, but in the wee hours of the morning this realization just makes me want to pack up and run away to a hidden island filled with sun, sand and peaceful thoughts (alright, so those of you who know me, know what island it is, so I guess it's not so hidden!).

I guess these next few days will be spent enjoying our last few moments of freedom. They say once we get started, Lisa will be there for a 3-4 weeks if all goes well. I know a lot of you are out there cheering for us and praying and I ask that you throw a few extra prayers our way these next few weeks. There are so many complications that can occur with this treatment that it is really going to be prayer and hope that gets Lisa and the rest of us through. Honestly, if we are out of Motts in 3-4 weeks...I would say we all have witnessed a miracle...so let's hope for that!

The other place we could use a few extra prayers is for Maranda. While her surgery went well, we now find that we are in a situation where there is no real medical data to support what next steps are. Bracing is what the doctor is recommending, however, there is no evidence that this will help, and the few studies that have been done indicate that most children with this condition will end up having spinal fusion regardless of if they wear a brace or not. Here are some summaries from studies:

"There are those who feel that braces are not indicated for the treatment of scoliosis associated with syringomyelia. I would say that although the success rate is lower, until a large series of patients is studied closely and the long term results are published, it is still probably a wise conservative approach to use a brace in an attempt to arrest the progression of the curvature. "

"In conclusion, since the number of cases of patients with scoliosis associated with syringomyelia is small, no hard evidence exists to completely support any recommendations concerning management. "

"It is clear that this disease is rare enough that definitive recommendations cannot be made until multi-center studies are used to accumulate enough data to produce reliable statistics concerning the benefit of various treatments. Until then, each patient and their physicians will continue to make their decisions based on careful counseling in light of the scant information available"

Mike and I are split on "get a brace" decision. Mike feels it wouldn't hurt, so we might as well try it. I feel "it's not proven to help and making Maranda wear it 24 hours/day for the next 3-4 years seems a bit ridiculous if odds are she is still going to have a surgery". Maranda, of course, doesn't know what she feels.

I get a strong feeling that the doctor recommends it just so we feel like we are doing something. Her words were "Parents like to know they've tried everything, that way if surgery does need to occur they are not second-guessing themselves". That still doesn't convince me that bracing is the best next step. I continue to try and gather as much info on this as possible so we can make an informed decision. Maranda will be getting a back xray soon and we are scheduled to meet with doc on 2/23. I'm also talking with my chiropractor and physical therapist to get their thoughts on the issue.

Ok...I'm sure this blog is way too long...but now at least I feel I can go back to sleep.

Thanks for reading and keep on praying!

P.S. Feel free to say a few extra prayers for Thomas and Christina...they certainly have gotten the short end of the stick lately!

Another week off

Things have been a bit normal around here lately. A nice change. The next phase of Lisa's treatment is on hold until we can figure out what the "spots" are in her lungs that showed up on the CT scan.

Bloodwork indicated it was not a fungus called aspergillus nor was it a cmv virus infection. The doc are thinking it is some type of viral or atypical bacterial and there aren't tests for most of those things, so we are treating it with antibiotics. This seems a little odd considering she is pretty dang healthy and running around like a nut. But right now it's our best defense.

She is scheduled for another CT scan 2/9. That will give us time to see if the thing in the lung is getting bigger, staying the same, or shrinking with the meds. Hopefully all will be gone, because if spots are still there the next step will be a surgical biopsy. (UGH!)

So...we wait another week. I'm feeling much more optimistic these days. Seems like we've turned the corner. I'm feeling pretty confident that the spots will be gone and the scan will come up clean and we can continue with the next phase soon.