No more Chemo, but another problem comes up

Tuesday, January 8, 2008 3:10 PM

 

We just got back from the CHC, and we have some BIG news. Dr. G reviewed her scans, all clear, all good. You can not even measure the optic glioma(s) anymore, and the enhancement is totally gone. He had discussed initially going between 12 and 18 months of treatment as long as Rebecca tolerated them. Her platelets have begun to dip a little after each chemo, not enough to require a transfusion but enough that it could be problematic if Chemo continues. So – today was Rebecca’s very last chemo!

WOOHOOO!!!

I guess going in this morning we knew there was an outside chance that Dr. G could say “Things look great, we don’t need to continue”, but to actually hear those words were shocking. Rebecca will still keep the port in for the next year, and will still need to have it accessed monthly, to flush the line. But other than that we will be done with the Day Hospital. I am in shock. Not that Rebecca is done with all of her other appointments. She will still have her regular Neurology appointments. But with Chemo ending, it does open the door for us to try alternative treatments for her epilepsy.

 

Wednesday, January 30, 2008 5:06 PM

 

Things are going well for Becca. She is playing so much, and getting so much more verbal. She is trying to repeat words, and doing so much better at making requests in her environment (such as momma, dadda, baba/ bottle, signing for “eat”). This past weekend Rebecca and I went to visit

my best friend, Jennifer – ‘Aunt Jenn’ to Rebecca. Becca had soo much fun. She got to play with Jenn’s two goats. Did I mention Jenn lives in the NC mountains? Becca also got to ride a horse again. We went to Winterfest in downtown Blowing Rock. Becca got her face painted with a sunshine. It

was such a fun experience. Tuesday was our first port flush after Chemo is done. Basically once a month Becca goes to get her port flushed to keep it in good working order. She keeps her port in for a year so that it can be used for the sedation meds for her MRI, or anything else that might come up (ie better safe than sorry).

For anyone who would like to look, here is our Kodak Gallery with Rebecca’s

recent trip http://www.kodakgallery.com/I.jsp?c=56w6mgz.9o2lj49j&x=0&y=gq9ry5

(although the link to Rebecca’s gallery is also in our links section here, so feel free to browse her other pictures!) Becca loves you.

 

Sunday, February 24, 2008 3:00 PM

 

Things continue to go pretty well for Becca. Right now she is a little sick (who isn’t in this horrible flu season!). But she is managing it well. Thank goodness we are done with Chemo, otherwise this could have been pretty scary, since we didn’t actually come in contact with anyone who has the flu (although I got sick first).

No new milestones to report. But like all 2 year olds she continues to see what kind of mischief she can get into. Constantly testing her boundaries. Through my network of mommy friends I have been following the story of a precious little baby, Paxton who has a seizure disorder much more serious than the one Rebecca has. If all of Rebecca’s friends and family could please pray for little Sweet Paxton, I know her family would appreciate it. Here is her caringbridge site, so you can see what is going on there http://www.caringbridge.org/visit/paxton

 

 

Saturday, March 8, 2008 4:48 PM

 

 

Well we are officially starting on a special diet for Rebecca’s seizures. Its a Modified Ketogenic Diet. This diet is a Low Glycemic Index Diet. http://www.epilepsy.com/epilepsy/keto_news_may07

Basically, if you have heard of the south beach diet, then you are familiar with some of the same principles that this is following. Its good carb/bad carb. It is going to be limiting her carbohydrates for the day. And the types of Carbohydrates she gets for the day (they will have to have a glycemic index of less than 50). I’ve got lots of research still to do, learning about foods – but it will be worth it. So far things have gone well. Today I finally made it to Barnes and Nobel and got the books the Dietitian recommended, so at least when meal time comes I don’t have to pull open the lap top to figure out appropriate foods. Granted next week the dietitian should be providing me with several meal plan ideas for Rebecca, based on foods we talked about and Rebecca’s height and weight (ideal calories, fat content etc). That should make life a little easier for me. Of course I still have a lot of freedom to plan meals as I choose. The reason we are doing this diet, and not a traditional Ketogenic diet is that there are no dietitians at Duke who are trained in the Ketogenic Diet. We would have to travel to either Charlotte (closest hospital for treatment) or even John’s Hopkins (where the main center for the diet is located). Since the full Ketogenic diet requires a lot of commitment and has a few drawbacks that neither her neurologist nor I are ready to face, we felt one of the alternative diets for treatment of epilepsy was best. Some hospitals use a Modified Atkins for Epilepsy. Duke uses the Low Glycemic Index Diet. Please keep us in mind as we transition into this new phase of eating – well Becca’s new phase of eating, mommy’s new phase of food prep for Becca. Somehow this just isn’t as easy as giving her a pile of cheerios and a can of peaches. DARN! I am gonna miss those days. But hopefully once I get the hang of this I can have meals ready and prep time minimized.

Oh – other happy day news!! We have rescheduled OT, its gonna now be on Thursday afternoons. This means that Mommy and Becca now have Tuesday and Wednesdays free. I can’t even remember the last time we had TWO WHOLE DAYS free in our week. It had to be before we added OT. Good grief! I am so excited. And just in time for spring. WOOOHOOO!!!!

 

Thursday, April 17, 2008 3:51 PM

 

I just wanted to take a moment to update everyone who doesn’t know that Rebecca’s most recent MRI showed signs of Hydrocephalus. 😦 Actually we found out today when we met with the neurosurgeon that her previous scans had showed some signs of enlarged ventricles, but each one was insignificant. But as you looked at a series of scans – especially at the most recent one it is pretty alarming. This news, combined with her being pretty lethargic recently prompted the doctors to decide that she needed

surgery to put in a shunt now, rather than later. A shunt is really the only treatment available for hydrocephalus. Although this website doesn’t have a whole lot of information, it probably can answer most of your questions

http://www.hydrocephalus.org/facts.htm

The doctors are not sure exactly what type of hydrocephalus she has. They don’t believe there is anything blocking the pathways between the ventricles preventing the fluid from being flowing like it should. Hopefully we will just be in the hospital overnight. But I think anyone who has ever been in the hospital knows how that can go. Dr. Leigh may come in and decide “Well while you are here, lets go ahead and get some additional Video EEG monitoring done” or something crazy like that. So I am going to pack for a multi-day stay. (Yeah I don’t trust the hospital one bit!).

As Rebecca has gotten older, please pray also that we are able to keep her entertained in the hospital room. Somehow I don’t think she will be as content sitting in the bed all day. And since she doesn’t walk on her own we can’t just let her crawl around on the floor (or attack all the very “interesting” stuff in the room) Containment will be an issue, I can see it already.

 

Friday, April 18, 2008 10:36 PM

 

Surgery is over (well long over now). the surgery itself went fine. The shunt is in. However after surgery Rebecca has not really wanted to wake up, and has had an increase in seizure activity. Most notably the not waking up has been of concern.the doctors did a CT scan to make sure there was no blood in her brain/skull, which came back fine. PHEW!! And right when we got back from CT the phlebotomist person was here to draw the blood. That woke Rebecca up. I kept having to tell the woman doing the stick DON’T worry about waking her up, since she was trying not to wake her up (thinking it was just a sleeping child). I said, we WANT her to wake up, we’ve been unable to get her to wake up. But the needle stick did the trick (okay it wasn’t the intent, but hey, it worked). She woke up and was able to have some juice (in an effort to get her to not eat the oxygen sensor taped to her thumb). when her medicines came later we did have to spend several minutes working to wake her up. But she often does that when I bring her late night dose of meds – I have a feeling getting her up as a teenager is going to be a nightmare. She must have inherited that from Uncle Rick (hahaha).

Please pray that tomorrow goes better for her, and that she is able to tolerate being held by Mommy or Daddy. I know we badly want to hug our baby girl. But right now it hurts her too much to try to pick her up. Her head is just too sore.

 

 

 

Sunday, April 20, 2008 7:52 AM

 

Saturday went much better.

I’d actually typed out an update – but was almost done typing when Rebecca had a minor head drop while sitting in the crib facing Daddy and bonked her forehead on the rail of the hospital crib. I set the computer down to check on her, and by the time I picked up the laptop and finished typing my session timed out. DOH! Anyhow, she was much more herself yesterday and we will be going home today – the sooner the better. Both Daddy and I got some snuggle time yesterday.

She is still going to be sore for a bit, but hopefully once we get her home, where she can move around a little more in a safer environment with more space to move it will help. The living room floor is a lot safer than the small hospital crib. I know after spending so much time sleeping on her right side, its made her extra sore. I’ve helped her slowly and purposefully turn towards the other side, just so she can be on her left. Please pray things continue to improve from here. – at this moment we are waiting on the doctor, silly neurosurgeon came at something like 7am yesterday (it might have even been earlier. and of course it woke me up as I was trying to go back to sleep. Today, i am wide awake – and where is he????

 

Monday, April 21, 2008 4:25 PM

 

We came home yesterday around lunchtime. things have gone pretty smoothly at home.

Rebecca is still sleepy, but doing so much better, day by day. It’s been cute watching her try to sit up (and even pull to standing at the couch- very briefly). It really takes a lot of work for her, and wears her out quickly.

I think I am seeing a few subtle things that are an improvement of how she was before the surgery. Little things like the use of her left hand. thank you everyone for all your prayers (and thanks to Judy for spreading the word on Gunner’s page – that was so sweet!).

 

Tuesday, April 29, 2008 11:56 AM

 

Things are starting to improve a little bit. Rebecca is finally starting to have a little bit more energy. Today was our post-surgical follow up. The doctor thinks part of the reason she has had such a hard time is that in addition to all of her seizures making life harder for her, is that she was already having a generally harder time before surgery (really low energy). So when you are starting out at less than 100% going into surgery, its even harder to get back to 100% after surgery. Today was one of the first times she ate a normal meal after surgery. We’ve temporarily put the special diet on hold, just because we knew that getting her to eat would be kind of hard and we wanted to just focus on getting her to eat. So if that meant giving her goldfish or other fairly typical toddler snack foods, but forbidden foods on her special diet, then so be it. Actually one of her favorite snacks are those little gummy fruit snacks. She LOVES those (not gummy worms, the ones with real fruit juice).

Thank you for all your continued prayers and support. They mean so much to David, Rebecca and I. Continue to pray that she gains her strength back quickly. Please also pray that we are all able to recover from the emotional stress of all of this. I think its finally taking a toll on us. I know David and

I are exhausted lately, and it must be due to the stress.

 

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