So much life – so little to say

Catching a few zzzz on my Christmas present from Santa

Catching a few zzzz on my Christmas present from Santa

I feel badly that I have not updated this in so long. Yet how do you update a blog to say the same things over and over again? How do you write things that make you feel so utterly broken inside?

The “good” news, Rebecca’s tumor only grew a very small amount. This means we are waiting until March to scan again. We know the tumor will have to come out at some point. We originally thought the tumor was 5mm. This was based on our first phone call with Dr. Grant. However since he didn’t have the film in front of him, with the actual measurements, it was sort of a rough measurement. To him, it was just “tiny”.
In December we were comparing that scan to the old one. So we had them to measure side by side. The tumor was about 8mm when it was found. It was about 9mm in December. So about 1mm growth. This was considered good news, it means it is slow growing and not aggressive. Becca did not have to have surgery during the holidays. yeah – that is all old news. Now we just wait for March. Dr. Grant did say that it will have to come out eventually.

On the same token we continue to see an increase in seizures. I was able to get Becca into Neurology last week. It wasn’t with her regular Neurologist, but it was someone in the department at least. We’ve increased some of her meds. We’ve also changed her rescue med. (For those who understand this gunk – we increased her Onfi, and changed her from Diastat to Clonazepam). I found that because of how she gets into “trouble” with seizure activity, Diastat was just too hard to give. She doesn’t usually have true status seizures. It is more like she has what I call a “clusterfuck” – she will have back-to-back (to back) seizure events. Often a vicious cycle of complex partials and clusters of head drops, and back and forth. Since she is still conscious through all of this, giving her a tiny pill that will dissolve in her mouth will be much easier than trying to give her a medication that is administered rectally.

We are also still seeing quite a bit of fatigue. Poor girl is just so sleepy. Now before all of my good-natured friends and family jump to the conclusion that it is her shunt, we do know when she is awake, she is her normal hyper self. She also displays no other signs of shunt failure. Yet we continue to see her take 3 hour plus naps on the weekend, or any other time she is given half a chance. This all greatly affects her school performance.

The good news is Rebecca continues to show how smart she is, even though it is causing me many more gray hairs. Rebecca loves to test her boundaries. There are a few things that are off limits. Reaching over the gate into the kitchen is one of them (whether she is reaching for the trash can, or something on the kitchen counter.) She usually gets a couple warnings “Rebecca, No”, “Rebecca stop touching the trash can” etc. She KNOWS. She will turn and see who is watching. These days she takes it a step further. Because she knows I will give her a smack on the butt for misbehaving (after having been warned to stop, more than once) she will now either sit down, or put her hand over her butt as soon as she sees me move towards her to punish her. So she not only knows she is doing wrongly, she knows the consequence! What a stinker!
And no – time out would not work, this is a child with limited mobility. limiting her to her chair would not be punishment. Rewards have no meaning, so that would never work. Re-direct works for about, ohh 2 seconds.

So that is our life in a nutshell.


Through the perspective glass

I don’t talk as much about the genetic disorder that Rebecca and I have. Mainly because it has often taken a back burner to things. Rebecca and I both have Neurofibromatosis.

I recived my diagnosis approximately 26 years ago. My parents had long been curious about the “freckling” that I have on my skin. Becca and I both have multiple large freckles all over our body. Some the size of a pea, some larger than the size of a half-dollar (albeit they are oddly shaped). As it happened, there was a free skin cancer screening at Crabtree Mall. My mom took me, thinking that maybe this guy would know what they were. I know a few of my spots have been present since I was a baby, but I also know more developed as I grew older. The same trend is present with Rebecca. Anyhow, the dermatologist running the screening took one look at my spots and said they were not skin cancer, but was pretty sure he knew what they were. He mentioned Neurofibromatosis and suggested we get a referral to a Neurologist. And so, my journey began.
I do not recall my first appointment at Duke. There are certain things about those early days going to Duke that I do remember and it strikes fear in me. Back then it was not a matter of going into a bright, colorful Children’s Clinic. No! The Neurology Clinic was in one of the basements of Duke South. Dark wood paneling lined the walls. Poor lighting the hallway and waiting area. I remember taking the “shuttle” thing from one hospital to the other. But for years and years all I remembered was the elevator that moved sideways. Between that and the number of elevators that Duke has that have doors that open on either side has led to my great distrust of Elevators!
I remember the Neurologist telling my parents “Well she will never be a ballerina”. Little did he know that I wanted so incredibly badly for my parents to let me take dance lessons. It broke my heart! I vaguely remember some other poor little girl finishing her MRI scan and being wheeled away crying and being so upset. It did not bode well for me!
My parents got some pretty upsetting news from that first MRI. I had 4 tumors.
I remember the entire family being so incredibly upset, fearing I was going to die. None of the tumors were operable. There was no chemotherapy option.
For the time being it was wait and see.
I distinctly remember swearing that God would not let those tumors grow until He allowed Doctors to have a way to remove them. I also swore that one day there would be lasers that could get go them. (this was before CDs folks – so how my little 10-year-old self knew ANYTHING about lasers is pretty miraculous).
My parents had a long agonizing wait for the next scan, and then the next one and subsequent ones to show that the tumors did not grow. 26 years later and there has not been any growth.

Flashback to this past Tuesday. Becca had her annual MRI. I did not plan on a meeting with either her Neurosurgeon or Neuro-Oncologist afterwards. After all, her gliomas have been stable so long, I didn’t see a need for an appointment. They could call with results. Even the Nurse for the Neuro-Oncologist agreed it was a fine decision.
Famous last words!
Thursday the Neurosurgeon called. She has a NEW spot. Not seen on previous MRI scans. It is 5mm. Yeah – I had to google that too. It is slightly larger that the diameter of a #2 pencil. That gives you pretty good perspective. According to the doctor that is “tiny”. Our next step is waiting 3 months for another MRI.
So now I sit here, with a chance to look through the perspective glass. I know how my parents felt. Somehow I don’t have that same feeling I did when I was 10. I can not summon the “it WILL be okay”. When I was 10, I didn’t need anyone to tell me it would be okay. I just KNEW. Now, I don’t know. I can’t say if being a parent has changed me that much or if my Faith is faltering. I know she will be okay, don’t get me wrong on that one. I know God has His mighty hands around her. But I do not feel as assured about timing, or the overall sense of things like I did when I was a kid.
I ask you to pray with me. Pray for Becca’s healing. Pray for David and I as we muddle through this as parents. Pray for the doctors – that the right decisions will be made in the months to come.

Starting Chemo

Friday, November 10, 2006 7:30 AM


Rebecca will have a new Video EEG (VEEG) done at Duke next week. We check in on Tuesday. The VEEG will entail having the electrodes attached to her head to monitor the brain activity – particularly the seizure activity.

There will be a button that David or I can push each time we see Rebecca having a seizure. This will make a notation in the recorded file so doctors can go back and compare the brain activity and know more about where in her brain her seizures originate from. The only downside for Rebecca to this will be that she will be somewhat limited in what she can do. There is a pretty long lead on the equipment lines, but she won’t be able to be as active as she is at home. She is quite good at rolling all over the floor at home.

Later this month we will meet with a Neurosurgeon to discuss the fact that the right hemisphere of her brain continues to grow larger than the left and is starting to cause too much pressure in her skull. Right now I don’t know much more than that. We also know that she has bi-lateral optic gliomas, which are directly related to Neurofibromatosis. It appears these have also grown. Although these are benign, we will be meeting with a Nero-oncologist to discuss options. Surgery is usually not an option for these types of tumors because it is nearly impossible to operate without doing more harm than good. I will try to keep everyone updated





Tuesday, November 21, 2006 2:07 PM


Well the hospital visit was much more long and drawn out than we planned. Rebecca had the Video EEG monitoring. She also had a PET scan and another MRI. We met with Dr. Gururangan (aka Dr. G) because of the bi-lateral optic gliomas found on the previous MRI. The new MRI done was to focus on this region. Since surgery is not an option with this type of tumor she will need to have chemotherapy to stop the growth (and hopefully shrink) the gliomas. Rebecca will have a portacath put in so the

chemo will be easy to administer. All of the chemotherapy treatments are scheduled to be outpatient.

However, before she can begin chemo the Neurologists and Neurosurgeon need to decide if there is anything that can be surgically done to help Rebecca’s seizures. So right now we are still in a hurry up and wait pattern. We meet with Dr. G again next week, any maybe by that time the Neruo team will have reviewed her EEG, MRI and PET scan and made a decision.


Tuesday, November 28, 2006 5:21 PM


We met with Rebecca’s new Dr today. Rebecca will start Chemotherapy next Thursday (December 7th).

They were actually able to get her in really quick for the surgery to implant the Infuser Port – that is going to be this Friday (December 1st). It will be a same day surgery if all goes well. Then Thursday, and every fourth Thursday thereafter for the next year, Rebecca will go to Duke for outpatient Chemotherapy. Chemotherapy is the single best way to treat this tumor type. Although it is benign, the pathology doesn’t matter. It is still a bunch of cells growing

and behaving in ways they shouldn’t. Her hair shouldn’t fall out, but she will be nauseous. She will get Nausea medication each time before her chemo starts. We will also have to get blood cultures done weekly. The nurse from Dr. G’s office is trying to work it out for us to go to the clinic over on Herndon

Rd for those, so we don’t have to come to Duke each week. The port, will be completely under her skin. Doctors will be able to administer medications through it, and use it for blood draws. It will save

her in the end from starting a new IV each week, and multiple sticks each time. Here is a great site with info on the Port – click on Subcutaneous Ports on the Right. Its a really neat Audio/Visual to describe it all.


Friday, December 1, 2006 7:11 PM


Surgery went well today. We were home by noon. Rebecca is very sore and very tired. She really doesn’t like anyone touching her – even holding her. I guess the first few days post-op we just move through the days as best we can. Each day Rebecca will feel better.


Sunday, December 3, 2006 5:06 PM


Here it is Sunday and Rebecca is already doing a lot better. She is back to playing almost normal – not quite 100%, but probably 80% or so. Just wanted to post a quick note to let everyone know she was doing so well.



Friday, December 8, 2006 7:38 AM


Rebecca had her first treatment yesterday for the optic gliomas. Ya know – the Dr’s and Nurses at Duke are great – but the system is horribly ineffective! First off, the woman at check in forgot to put Rebecca’s paperwork back there for the nurses, so the nurses never knew we where there. We waited over an hour before we were taken back. The woman claimed it was because things got so busy when we got there (I didn’t see all those people). So for a 9am appt, and what should have been 3 hours of treatment, we were leaving at 3:30.


Rebecca did pretty good while we were there. Mostly slept. Santa was in the Children’s Health Center and although Rebecca didn’t get to see him, one of his helpers brought Rebecca a present – a nice cute stuffed animal. Santa bought toys for all the boys and girls in the Health Center that day. Rebecca got sick around 9 last night, so David and I had to clean her up, and change her sheets. While changing her sheets, she got sick again. Then she didn’t want to go back to sleep. So she played in her crib for at least an hour. I got smart though and took out all the soft toys – just in case they were in the line of fire.

Already this morning she is playing and doing well. But then again, she just finished her bottle. We shall see how long it lasts in her tummy. I don’t know how these treatments are going to go in the long run – as far as keeping her occupied. Rebecca really wants to be climbing around and because the treatment area is really just a row of chairs anyplace for her to play. There are a few game systems and TV’s with VCRs for older kids

though. We shall see!