Chemo Day 1

Happy birthday Tator Tot!!!  So, yesterday my baby turned 4 and started chemo treatment for her optic glioma brain tumor.  Yes, this is actually happening... the day has come.  I woke up extremely exhausted from the past couple days and just wanted to go back to bed.  But alas, I got up... me and the whole rest of the house because today the big kids were tagging along.  I wanted them to be there to support Taylor, to see what she is going through, to learn and ask questions, and to get a good experience, etc.  So the hub helped in the morning again.  The night before, a huge storm blew through with tornadoes and everything.  I woke up at like 3am and heard a bad storm but prayed and went back to sleep.  I learned later that everyone else I knew seemed to have been up and hiding in closets from tornadoes.  So, I am glad we are all safe.  I am also glad that it wasn't still storming when it was time to drive.

Taylor was wearing her new tutu and when we walked in, immediately all the nurses were like, awe how cute.  They think she is just the most adorable thing.  They all said happy birthday to her.  As we were waiting for the doctor, the staff comes in with a big bag full of gifts for Taylor.  That was the sweetest thing!  I did not expect that at all!  Taylor was so excited!  Again, such a blessing.  We ended up waiting around for quite a while; it happens that the Doctor got stuck in traffic from a tree blocking a road because of the storm that came through.  Finally, we were moved to the treatment room.  We had to wait a little bit more because they did not pre-make the chemo like they normally do.  This is because they wanted to double check her weight.  I guess someone thought it was a mistake because it says 28lbs and she is 4 yrs old, lol.  We had an 8:00 appt and finally got the chemo started at 10:40 or so.  While we were there, the other girl we met yesterday came in for her treatment and brought Taylor a birthday gift.  Again, we were pleasantly surprised and thankful.  She has so much blessing following her around during this time.  Also, while we were there the big kids were taken back to talk with one of the staff all about what is going on with Taylor.  They had a puppet that had a port and everything and they used him to talk all about it.  They learned about the port, the chemo, the tumor and how Taylor might get sick and everything.  Near the end of the treatment, a music therapist came in.  She had a few instruments with her and the kids got to play with them.  Taylor wanted the guitar and nothing else.  The guitar was supposed to be for the therapist to play and sing but she let Taylor have it to play with.  She loved it!!!   She wants to get one with her birthday money.  So the kids had fun with the music for a bit and then it was time to go.  During the treatment, Taylor was fine.  It didn't hurt her and she seemed unfazed by it.   She then had to get a flu shot; since we don't do them, she hadn't had one.  But being that she is on chemo it seemed ok to give into that and it should help her wjen her immune system gets compromised.  She hated that shot!  It hurt!  Then we were all done for the day.  All was well when we left the hospital.

She wanted some McDonalds for lunch on the way home; I hate going there but it was her bday after all.   She fell asleep in the car and woke up right as we were picking up the food.  We got home and she didn't really eat much, but that is not abnormal for her.  She wanted to play with her new stuff.  I was extremely exhausted still.  I wanted a nap really really badly; I was really grouchy too.  But alas, straight from lunch time, to feeding baby, to having to leave to pick up the boy at school...  When I got home I tried to take a nap but it didn't really work.  I did rest for a bit though.  Then it was off to drop of the scrips to get Taylor's meds and buy her some Eggo waffles she wanted for her bday.   When I got home, another family was over dropping off our dinner.  We love you guys!  Thanks!  Around this time, Taylor slowly started saying her tummy hurt.  We were not sure if it was from hunger or sick feeling from chemo.  She ate her dinner and still complained about her tummy from time to time.  So I figured it was the chemo kicking in.

Then it was time to go pick up her meds.  She wanted to come with me, but she was also all of a sudden complaining a lot about her tummy.  So I was saying she should stay home.  But she really wanted to come, so I brought her.  Right after we left the house she started screaming about her head hurting.  She screamed and cried really hard.  Just out of nowhere.  It didn't sound good at all.  Also, saying her tummy hurt.  I finally got her to calm down right as we got to the pharmacy drive thru.  Then she threw up all over herself.  Poor thing.  As I picked up the meds, we were told that one of them (the nausea med) needs prior authorization from the Doc before the insurance will cover it.  So we can't have it until they get that. REALLY????  Because she is throwing up right now and it would be nice to have!  Ugh, how moronic.  Anyways, finally got her home and cleaned her all up.  She was fully pale and looked horrible.  She wanted a bath and when getting one she was shaking really bad.  Finally got her in her warm pjs and she wanted some of her cupcake that was given to her.  I knew she was still feeling sick but let her have a bite because it was her bday and she wanted to.  She took a bite of that along with some soursop juice and she threw up again.  I took her temp and she was only like 97, so we bundled her up in her bed and she pretty much feel asleep while I tucked her in.  She was so cute even in her patheticness.

She slept well and woke up a little early and wanted to sleep in our room, so she brought her new pillow pet and blanket in on the floor.  When we got up, she threw up a tiny bit more but felt better and wanted to eat.  She had breakfast just fine and has been acting her normal self.  She finished up a box of soursop juice (a certain fruit that is supposed to help with getting rid of tumors) and I put some frankincense on her feet, neck, and back (an essential oil that is supposed to help with tumor fighting as well).   Hopefully these things will make a big difference!  Occasionally she says her tummy hurts, but she is doing okay.  Her arm still hurts but she is using it now.  She is actually climbing on my back as I write this, lol.  This morning I got to sleep in while hubs got the boy off to school.  A friend of mine also came and picked up my oldest boy to take him to his science class.  She came by with homemade banana nut muffins for the family!  So thoughtful of her!  I feel well rested now and no longer like a zombie!  Also, finally getting around to doing some laundry around here.  Much needed!  Thanks for your continued prayers for all of us during this time!

Prep days

I needed to be up at like 5:30 or so in order to get everything and everyone ready for the day.  However, the baby got up at 5 for some reason and I was awake enough, so we just got up and got started.  I was able to get everything done without getting my husband up.  Which I am sure he loved since he was up really late finishing a project.  Then we (Taylor, baby, and I) were off to the hospital for her port surgery after dropping off the middle boy at school.  I realized I left the house without eating, so we stopped quickly at Starbucks for a much needed caramel white mocha and a blueberry muffin.  Poor Taylor was not allowed to eat or drink.  She was like, I'm hungry mommy... I like coffee mommy.  I'm like, awe I know baby.  I pulled away and realized, once on the road, that they gave me a mocha instead of a white mocha.  Ugh, I hate their mochas!!!  But, I ended up drinking it anyway cuz I needed to.  Anyway, back on the road and the nurse calls saying they would like to start us early and they will be ready when we get there.  I'm like, well I can't drive any faster than traffic will let me, lol.

Traffic wasn't that bad and we arrived about 5 minutes early, for an 8am appt.  Not much longer, we were taken back to get started.  Her surgery was supposed to be at 10.  They were done with the pre-surgery stuff and ready to take her back at 9.  About 20 min later or so, the surgeon came out and said they were done and it went perfect.  But it would be another 20 min or so until they finished up.  A little over an hour later, the nurse came and got us to take us to her.  She was crying and not feeling good.  Her arm hurt really bad.  We watched tv while they went to get her some pain meds and an icee.   Then she kept saying her nose hurt and then her head was hurting and she would whine and cry.  We were waiting there forever it seemed and the nurse said they were waiting for the doc to check her xray.    She had her icee and a bag of doritos.  They finally got an ok and we left right before noon.  Her arm was in pain the rest of the day, but not so bad she complained a lot or needed any more meds.  She would just not use that arm to do anything.

During this day, a friend of mine came and took my two oldest to the discovery center for the morning and then came back to cook us dinner and clean some of our house.  That was such a blessing!  We are very thankful.

Tuesday, I needed help with the morning so my hubby got up and got the kids ready while I fed the baby.  He made me some coffee too :).  Then, we were off to the hospital again for her kidney test and hearing test.  They brought us right back and all the staff thought she was so cute.  They needed to access her port for the test today.  The bandages are supposed to stay on for 2 days, and yet here they were taking them off and sticking a tube into the port already.  Taylor did NOT like it, it hurt really bad!  She was crying and screaming.  Her arm was still freshly sore from the previous day's surgery.  They numbed up the area with some special cream, but she didn't even like them touching her for that.  And when they finally inserted the tube, she still felt it.  It was not fun.  Then they had to get her arm and inert the dye test; it took them three different tries to get a good vein.  She REALLY did not like that!!!  Poor thing.  They were finally done poking at her and we went and sat in a big chair with a personal tv and lots of games.  They would come by every 30 min or hour to do a test with an injection into her tube.  That didn't hurt at all.  We just sat around waiting and playing games and eating lunch.  While we were sitting there, we met another girl who was there for the same thing as Taylor.  She was a teenager and they were both starting this process at the same time.  So every time we come in, we will see them and being going through the exact thing.  So that is neat.  They were a nice family from Alabama who loves Jesus.  Another lady was there with her dog.  They come in as "pet therapy" for the patients.  Taylor liked petting the dog, it was really soft.  Then we were done right before 1pm.  Just in time for the 1:00 hearing test appt.  So we went upstairs and got that done.  She did perfect and then we were able to go home.  Her arm was still hurting, but she was fine.  They left the tube in so that they wouldn't have to put it back in the next day.

During this day, our babysitter cane and hung out with the two oldest to watch movies and play games.   They just love her and she is awesome.  We are thankful for her.  Another family brought us a meal for dinner.  Again, so thankful!  Another friend came by and brought Taylor a gift; she had made her a shirt with a heart and the letter T on it, and also a tutu and hair bow.  They were so cute and she wanted to put them on right away when she opened them that night.  Also, a lady from our homeschool co-op delivered some birthday cards that the kids in the service project class had made for Taylor.  That was so sweet!  She loved opening all of them.  She is really blessed to be receiving so much love!

Thankful...

Though nobody wants to go through something that we are going through with Taylor, I find myself thinking how God can use this to glorify himself in different ways.  I look forward to seeing Him work, and drawing closer to Him in this time.  I am also so thankful for many things...

Thankful that the tumor is only affecting 1 eye

Thankful that Taylor fell on her head to make me constantly examine her eyes, to which we took notice of the issue that the tumor is causing in which we then found said tumor

Thankful for a pediatrician who knew about NF and saw the signs and led us to get the diagnosis so that we knew the things to look for and keep a medical eye on her

Thankful that there is a treatment to deal with this tumor so that she has a chance at saving her eyesight; and that it is 90% successful in these cases

Thankful that we have many family and friends standing in the gap for us and serving us and loving us

Thankful that we live in a town close to one of the best medical facilities that has all kinds of specialists who know all about Taylor's condition

Thankful that we have good insurance

Thankful for a double stroller to roll around the hospital

Thankful Taylor woke up Christmas morning potty trained!!!

Thankful the baby takes a bottle and does well out and about

Thankful that my husband works from home and has some flexibility in his schedule

Thankful for the others I am finding that are going through this with their kids; it is great to be able to share information and stories and to have support from those who understand

Thankful that I serve a God who is mighty and loving and is with me as I go through hard times

Thankful for the peace that comes with knowing Jesus

Thankful for a daughter who is so full of life and brings others much joy; may she be a blessing to the other patients and staff wherever she goes

What's wrong with her eye?

On Jan 1, 2013 we were in the kitchen and my husband was looking at Taylor and all of a sudden he notices her eye acting all weird.  He calls me over and it was like she had a lazy eye thing going on.  It was really obvious.  We kept watching it and it did not do it all the time and when it would do it it would just be a little bit and you would have to catch it just right to notice it.  It freaked us out though, because the day before she had just ran into her ladder on her bunk bead causing a huge bump on her forehead.  After some research I figured it was not related to that at all.  I know with her having NF1 that we need to keep an eye on her eyes, because of the chance for the optic gliomas.  So I started wondering if that was what was going on.

So, the next day we took her to the pediatrician and she immediately said we should go see her ophthalmologist   We got an appt for the following week.  He confirmed the problem we were seeing with her eye and said that he believes a growth from NF is the issue and she needed to have an MRI to get a better look.  He said we were smart to being her in.

He wanted to get an MRI in the next 24-48 hours, however due to some miscommunication, it was 5 days later, Jan 14 that she finally got it.  The MRI went well and while we were still in the recovery room, the ophth called and said he read her results and confirmed the presence of the optic glioma.  He said another doctor would be calling to schedule us to work on treating it.  It was a fast call because I was in a whirlwind int he middle of helping my daughter, with 3 other kids in tow and my cell phone about to die.  So I did not get very much info during that call other than that.  I did not know how big it was, how bad it was, where exactly on the nerve it was, etc...  These tumors can range from never being an issue, to being an issue right away and needing treatment.

The next day nobody called... so I emailed the geneticist to inform her of the diagnosis and see if she was in the loop.  She emailed back the next day saying she would talk to the eye doctor.  During this time, I posted on FB about what was going on and a friend from high school mentioned to me that she works with NF kids and explained the process of what happens with these tumors in treatment.  She mentioned that when the tumors are bad they use chemo since they can't do surgery or radiation and that chemo works really well in these tumors and NF kids.  I was like Chemo???????   I started doing a bunch more research... and prayed that wasn't the case for Taylor.

The geneticist called me that night and said that it was a neuro oncologist who would be calling to set up an appt for us with him.  I am thinking, oncologist???  Does that mean things are bad???  So, Wed Jan 16, the pediatric neuro oncologist called me to inform us that her tumor is in a place that is causing problems with her vision and seems to be agressive and they recommend treatment with chemo right away.  Um, excuse me?  Did I hear that right?  He was really nice and we talked on the phone for a while about it all and we scheduled an appt to see him on the 23rd (today).  He said he would want to start the chemo the next week.  Smack in the face!  Whirlwhind!  Is this for real?  I did more and more research after this call.

Today's appt filled in a lot fo the gaps of info we were looking for concerning Taylor's tumor and her care.  We got to see the MRI and see the tumor.  It looked huge!!!  She had an eye exam 8 months ago and the ophth was not concerned about anything.  Now, here we are and it seems to be taking up the entire right optic pathway.  It is not in the chiasm which connects the left and right eye nerves, thank God, but it is close and it is unknown if the tumor is growing towards it or not.  They are guessing it is agressive and if left untreated, Taylor could go blind in her right eye and if the tumor were to grow into that chiasm, she could go blind in both.  They don't think we should wait a few months and watch it, they believe it is already to the point of necessity for treatment.  We have already been noticing her eye weirdness more and more, like it is getting worse since the beginning of the year.  They can not remove the tumor due to its location in the brain.  They would have to remove her eye to get it out.  The best course of action in these cases is Chemo to try to stop the growth and preserve her eyesight as much as possible.  NF kids respond really well to this chemo.

So, she is set to start the process of treatment next week.  Mon we will spend in the hospital getting surgery for her port a cath to be put in her chest (this is used instead of always having to have in IV).  Tues we will spend at the hospital getting kidney tests and hearing tests (to mark a baseline to know if the chemo is affecting these areas in a negative way) and Wed, HER 4TH BIRTHDAY, she will start chemo.  Happy birthday, Taylor... you have an inoperable brain tumor and you need to start a weekly dose of poison for the next year... SUCK, I know... but oh well... it is better than going blind.  Anyway, back to the treatment... It is a low dose out-patient chemo that will be once a week for 10 weeks on 2 weeks off, then 4 wks on 2 wks off for like 8 cycles.  So around a year or so of treatment.

Intro to the NF1 journey

I am starting this blog today to document what is going on with my daughter Taylor and her condition of Neurofibromitosis Type 1, or NF1 for short.   She has had some recent issues come up and I would like to keep friends and family informed easily of everything.

During Taylor's first year of life, I noticed a lot of what I called birth marks appearing all over her body.  I did not think anything of them.  At her one year exam, the pediatrician noticed them (called cafe au lait spots) and said that the high quantity and large size of them could mean that she had a genetic condition called NF and she needed to go to see a geneticist to confirm.  I had never heard of this NF and it was like, what?   Basically it is a genetic condition that causes tumors to grow on the nerves in the body.  There are some other things that can be a part of it as well, but that is the general problem.  Taylor went to see the geneticist a couple months later and she agreed she probably had it.  So, over the next 15 months they kept watching her and she developed the freckling that is another sign of NF1, and they also did some genetic testing... it was after all this that they finally fully confirmed her NF1 condition.

NF1 is very random in how it manifests in different people.  Some people will never have any issues and others may have tons of tumors or neurofibromas all over their body and in their body.  One of the main things they watch for is an optic glioma.  This is a brain tumor that grows on the optic nerve.  It can be dangerous and cause vision loss, so all NF1 patients see an ophthalmologist yearly for a checkup to try to catch any problems as quick as possible.  If something is suspected, then they get an MRI to get a better look.  NF1 patients also get yearly exams by a geneticist or similar type of MD who deals with NF to be on the look out for the many other things that could arise.

The past couple years have been fine, we have not had any problems with her NF.  Until now... see next post.