Tuesday, January 26, 2016


Darbee had her first EUA on the 21st. Like all things done in the OR we did not know the time until 4:30 on the 20th so we went up to SLC got a hotel and went and had dinner at the Cheesecake Factory. It was really good until Darbee had a melt down and then I was so frustrated I made it not fun for everyone else.

After dinner we did a little shopping then went back to the hotel where we swam for an hour. Darbee screamed the first 15 minutes but then relaxed and enjoyed being with Daddy.

The next morning we had to be there at 8:30 with her OR time set for 10am. We took Tanessa with us not thinking about but this is as far as they let her go. Rhett and her had to go down in the waiting room they said it was because of it being flu season and her being in school. We understood.
This is what happens when they have to try to take her blood pressure. They decided it would be better after she was asleep.
After some Mommy snuggles and the nurse leaving she was better.
She loves this little corner of the pre op room. She will rock on the horse, play with the kitchen, and play with the babies. After getting her eye dialated she was done. She sat in my lap and we rocked. She did not get back until 10:30.

Tanessa was really good I had her bag full of toys and coloring books. Rhett said she mainly watched Netflix, thanks for the free wifi.
Is was only about 10 minutes from the time I made it to the waiting room that the doctors can and talked to us. They said her right eye looks GREAT no tumors at all. The plastic surgeon was able to come and look at her left eye socket and said it looked good but the conformer (clean leans used to keep muscles from growing together) had come out and she put a new one in and told us to make sure it stays in and if it comes out we have 24 hours to get it back in. Also told us her stitch was gone for a long time she is just choosing not to open it and they also think her muscles are not being pushed on enough to use, they are sure with the prosthetic eye it will push it enough. 
As soon as I went to get her she was crying and never stopped until we got into the car. They only gave her sleepy has no IV! We went and had lunch in Provo and she has another melt down. She road really good in the car all the way home. Once we were home I changed her bum and was unpacking when she came and found me and was chewing on something, I got it out of her mouth and it was the conformer. I quickly picked her up and took her next door to the eye doctor and he very nicely put it in and gave me some drops of she did it again. She has started to open her eye more and more and it is great to see.

We get her prosthetic eye on the 10th and 11th of February. Then the next EUA is on the 14th of April.

Biggest hurdle is the insurance with the genetic testing. We sent in our 3 appeal we hope this time it works!

Tuesday, December 15, 2015

Darbee's Story

On November 6th, 2015 our life was changed forever.  On the 4th I took Darbee to our Family Practitioner, for what we found out later was called a white pupil.  I started to notice it about 2 months before but just in the bathtub, I thought it was just the lightning in that room.  As time went on I could start to see it other places too.  Rhett started to notice it so we decided I should take her in.
The Family Practitioner wasn't sure what it was, but knew we needed to see a specialist ASAP.  She called a local eye doctor who is also an eye surgeon.  He was out of the office until Monday so we just made an appointment for that time.  Well I started to freak because was told there was a small possibility it was a tumor.  So what do you do when you start to freak about a medical problem now a days I got on the internet and started to google.  It instantly hit me this was bad and serious.  I call my Mom in a panic.  During one of the phone calls my Uncle was there eating lunch and my Mom had me talk to him.  He told me to call Primary Children's Hospital IMMEDIATELY and forget the appointment on Monday.  I did that and they told me with out a doctor's recommendation the earliest they could see her was December 28th.  Well I immediately called our doctor, but she was at lunch so I left a message.  After 5pm when I had not heard from her I text my Uncle and asked him what to do.  He texted back and said give me your info and I will get it taken care of.  The next afternoon I received a phone call and they had an appointment for Darbee the 6th at 1pm.  I immediately thanked my Uncle and he told me he called in some big favors.

On the way up to the hospital Darbee's DVD player stopped working so she screamed most of the way.  Rhett shut all music off in the car and would not talk to anyone, Tanessa let Darbee watch her DVD player with her making both girls happy, the heater in the car started to make really awful noises, Darbee would not let either her or myself eat lunch, the doctor's office was really crowded and HOT.  When we finally got past the 1st two tests and the NASTY eye drops (you would think we were strangling her) we finally got to meet with the doctor and let him exam her.  Rhett and Tanessa stayed out in the hallway because we had all had enough.  I was not prepared to hear the Doctor say she has RETINOBLASTOMA a very rare type of eye cancer.  He then told me some more stuff but I don't remember what he said.  I then went and got Rhett and we went and start to schedule the next steps we needed to take.

On the following Monday the 9th we headed back up to Primary Children's for a MRI.  Grandma and Grandpa Atkinson bought her a new DVD player and it worked great!!!

After we got all checked in to imaging they needed to check her vitals and that did not go well at all.  In fact the nurse technician never came back and sent someone else to finish.  Darbee has always hated her toes touched and that is where they test her blood oxygen and that was not good.  Then the hard part they had to put her IV in.  It took Rhett holding her and 2 nurses holding just her arm to get it in, but they were fast and gentle.  Once she got it in she wanted only Daddy and did really good if she was in the hallway and not in the exam room.  We had been to build a bear and had her build a puppy we named Ruff Ruff and that has been her security all through this.

When we went back into the MRI room they let me hold her while they started to give her the sedative in her IV.  They warned us it might will make her angry before it puts her to sleep, but within 45 seconds she was sound asleep.  I was able to put her on the table and kiss her good bye.
She was pretty out of it when it was all done.  It took quiet a few minutes to get her awake enough to drink so we could go.  We stayed at a hotel since we had to go back to the hospital the next day.  For dinner that night we went to Chuck-a-Rama next to the hotel.  She was very happy to finally eat.  We were very lucky to have Dick and Debbie come and stay at the hotel with us and keep Tanessa so she was having fun and we didn't have to worry about her at all.

The next day the 10th she had a "surgery" or as we now know it is call an EUA (examination under anesthetist). Once again they could not get her blood oxygen levels while we were in pre-op.  Then it took Rhett laying on her to get the drops into her eyes to dilate them.  They gave her some meds that go up her nose to help her relax and help her not to remember anything that happens.  We then walked her to the doors and they took her away.

She was only away from us for about 35 minutes when they doctor came and talked to us.  He told us there was some good news and some bad news.  The bad news first was that he was recommending that we remove the eye.  Eyes are made up of cells and don't have any tissue in them so you can't just remove the tumor you have to remove the entire eye.  The good news was that there was just one tumor in that eye and no tumors at all in the other eye.  If we remove the eye the chance of her having to do chemo is less then 5%.  The tumor was 1-2mm away from the optic nerve and that meant he wanted it out right NOW, because through the optic nerve is how the tumor works it way into the brain.  The tumor was large 13mm by 9 mm and had detached the retina so she was blind in the eye and had been for awhile.  He kept telling us that if we were his children this was his granddaughter he was tell them exactly what he was telling us.  He also told us that there are 2 types of this cancer a hereditary kind and a non-hereditary.  She follows all the guidelines of the non-hereditary kind except for her age.  With her age it goes totally with the hereditary.  The bad thing about this is the hereditary kind is a type of cancer that lives in your body your entire life.  It just depends on if and when it shows up again.  So they would also have to do genetic testing on her and the tumor to see what kind of Retinoblastoma she has.To get the ball moving again we had to meet with oncology and make sure they agreed the eye needed to come out and that chemo to shrink the tumor was not an option.  We felt good about what he told us and it was the best situation that he wanted for us.

It took a very long time for her to wake up this time.  They warned us this would happen.  Once we finally got her awake enough to drink again we were on our way home.  It had snowed all day, nothing stuck, but my anxiety was still through the ruff.  I sat in the backseat with Darbee and Tanessa to help with my anxiety and to watch Darbee they told me to really watch her in the car to make sure she didn't fall asleep with her head forward in her carseat, it could cut off her breathing.
This is a picture of her eye and the white spot at the bottom is the tumor.

Once we got home she was very happy to just run and play.  She received this dog from cousins Darcey, Jeff, and their kids.  It is a big as her and so soft.
While playing with Grandma and Daddy she put a blanket over her head and ran into the coffee table and gave herself a black eye on her good eye.

Back up to Primary Children's on Thursday to meet with oncology and then with Dr. Hoffman and make plans to remove her eye.  We got there early and Darbee likes to walk on the sky bridge and look out all the windows.

After waiting forever for oncology we finally met with the doctor's and they were really nice.  They actually got her to let them take her vitals by letting her play with the instruments before hand.  Oncology completely agreed the best course of action is to remove the eye.  They also talked to us about this cancer and the 2 types which we already knew a lot about.  They told us they hoped they would not have to see us again, and so do I.  This entire processes I have been able to be strong thanks to Rhett and lots of prayers, but as we sat there and watched these kids go get their chemo it hit me HARD that my baby has cancer.  That night Rhett found this saying and put it on his facebook and I followed suite.  It was exactly what I needed that day.
The following Monday the 16th we went back up to Salt Lake to meet with the plastic surgeon for her pre-op appointment and for surgery that afternoon.  We were having a hard time getting any info about surgery besides it was suppose to be at 3pm, if it was going to happen, they kept saying if.  After meeting with the surgeon she informed us that they had messed up her schedule and she could not do the surgery until FRIDAY.  I really went all Momma Bear on the surgeon.  I knew I went a little crazy, Rhett said I really went after her.  She said let me see what I can do and hopefully she could do it late Tuesday night.  That was better for me, but still not good enough.  So the surgeon left for about 10 minutes and came back and told us that she had moved her schedule around and the surgery would be that day at 3pm.  We would go into pre-op at 1:30pm.  We went down into the lobby and waited.  While waiting she curled up and fell asleep.  Then Papa Dick showed up to help support us.  It had been snowing like crazy that day.  We had gone to Uncle Brent's house in Salem the night before and it still took us 2 hours to get to SLC because of all the wrecks. We were very happy that he showed up.  Right before we went up my parents texted and said they were coming too.  I had asked them not too, but  I was so glad that they did.

Once again she scared off a nurse technician when she tried to take her blood oxygen levels.  The regular nurse came in and she was so wonderful and made it so easy on Darbee.  She was tired, thirsty, and hungry.  The room she was suppose to go into for surgery had the surgery before her go over an hour and a half, but our surgeon was able to get us into a different room and only 40 minutes late.  While we were waiting my parents showed up and somehow talked a nurse into bringing them back into our room which isn't allowed.  We just laughed at that.  Rhett wore his overalls to have lots of pockets to hold everything.
The surgery was to take 2 hours.  After they removed the eye and as much of the optic nerve as they could they would start building her eye socket for the prosthetic. They would put in a ball it is white and they would attach it to the muscles so that she can move it.  They also made pockets for her "contact" so that we don't have to ever worry about it going back into the eye socket.  Once she has completely healed we can meet with a guy to fit her with her prosthetic.  They will measure her and take pictures, the next day they will put it in and teach us how to care for it.  The main surgery waiting room closed so they moved us upstairs to the pre-op room and I caught Grandma and Grandpa playing video games.  Surgery took a little longer, but there were no complications which we were very happy about.
Once we got her into our arms we could breathe again.  She was still having a hard time waking up.  The lovely patch has to stay on her for an entire week.  We all knew that was not going to happen.  While we were getting ready to take her, they said they needed to draw more blood because her blood kept clotting.  We were really worried about that because she hates to have that happen.  Luck for us they put a heating pad on her finger, stuck her finger, and basically milked it until they had enough.  When we took to her to waiting room to show Grandma, Grandpa, and Papa that she was good, just really tired my friends Carrie and Koskell had come to show their support.  It was very nice to see them there.  We all went to the lobby and talked and Grandma got some snuggles and loves.  As we were heading out of the lobby Darbee got sick all over me and her.  I really think she just got too hot and had a huge bubble.  It started as a burp and then alot more come with it.  So we quickly left and headed to the hotel.  We called Tanessa and Grandma on our way to the hotel and it was good to hear Tanessa's voice and let her know everything was good.
We were shocked it was an out patient surgery, and we were worried about her and us driving home so we got a hotel room close to hospital.  She was still very out of it and we could not get her to eat. The hotel had an Olive Garden across the street so we called in our order and I went and picked it up and we had a nice picnic style dinner. We just let her sleep and she did really good.  She did wake up once crying pretty hard, but I didn't want to give her pain meds on an empty stomach so I gave her some Sprite and that calmed her down right away and she went right back to sleep.
We did pack the portable crib, but we all knew that was not going to happen, I would be too worried.  Rhett got a king sized bed so she just slept between us.  After her one time waking up when I did get her back to sleep she would only sleep if she was on my chest, which normally would drive me insane, but that night it helped me sleep because I could hear her breathing at all times.

The next morning we still could not get her to eat and she was in a little pain.  I didn't want to give her a full dose of pain meds on an empty stomach.  I gave her some and it helped for awhile and then I gave her the rest about an hour later while we were birthday shopping for Tanessa and we tried to do some Christmas shopping but she had enough and was ready to go.  At the mall while waiting for Daddy to get his and Grandma's watches fixed the nice thing is no one would say anything to you or try to sell you things when you are holding a little girl with a huge eye patch.  She couldn't eat but was still drinking so I was happy about that.

Once we got home she perked right up!!  She went around chasing the dog, chasing Grandma (who stayed at our house for 2 weeks to take care of Tanessa and our house so I could just concentrate on Darbee I could not have done it without her!!!!!!)

We went and picked Tanessa up from school and she was so happy to see us.  She had a headache when she got home so we cuddles up on the bed, watched tv, and put ice on her head.  After school we went and ordered her safety glasses.  I figured if we got her glasses and had them to put them on after she had gotten use to the patch being on her face for a week she might leave them on better.
It did not take long before the patch came off.  The shocking part was it was not from her pulling it off, it was from her rubbing her head on the floor, couch, and chairs while playing.  I tried to fix it, but none of the tape we had worked very well. I quickly called her doctor here in town and took her up  there and they fixed it for me.  They asked if I wanted to see her eye and I promptly told them no, I was not ready yet. She had to wear these braces on her arms whenever she slept that went from under her armpit to her wrist.  They kept her from bending her elbows.  They are called No No's and we all cursed them.  They kept her from rolling over while sleeping, putting her plug back into her mouth, and just being comfy.  We had very long nights that week with them on.  That patch lasted longer than the first one, it lasted until Sunday when Dad was watching her while we were all at church and she got mad at Dad so when he went to the bathroom she took it off.  I was able to tape it back on this time because the doctor gave us the good tape.
Her eye is sewn shut to keep out everything until it has healed.  The stitches are dissoluble and she will be able to open her eye in 4-8 weeks.
These two were very happy to be home together and to play together.  The only bad thing about the patch is we had to keep her in clothes that we did not have to pull over her head, which until Grandma Atkinson send her a package meant jammies.  She was so happy to not have things covering her toes.

Here is some proof that this surgery did not slow her down one bit.  She was already blind and that made a difference.  I usually only gave her pain meds in the morning and at bedtime.  That lasted for about 5 days then it was just at bedtime.

The surgeon was extremely happy with how everything looked as she took the patch off.  There was little swelling, no redness, and a tiny bruise.  I am grateful for all that has happened the way they have happened.  We have been very blessed in this hardest of times.  She is so strong and such a trooper.  It has not slowed her down one bit and she is so full of life and personality.

The glasses did not start out as a battle, she would leave them on unless she was tired or mad.  But now after almost a month they are a battle that we have to keep watch over her.  She likes to take them off and try to bend them so we have had to already go and get new screws put in them.  Will be looking into getting another cheaper pair.  One of her nurses told us of a website to look into to find some, they have prescription and non prescription, so we will have to give it a try.  They are non prescription they are just to protect her eye.

We are still in a battle, but so far it looks like she is cancer free.  She has 3 tests to pass and we have gotten the results of the 1st test and she passed it.  They said that there was just the one tumor, it was a very slow moving tumor and there were no signs of cancer outside the tumor.  The 2nd test we are waiting on is where they take a micro look at the cells in the optic nerve and look for cancer cells.  The 3rd test, which can take forever because we are fighting with our insurance on it because they already denied the claim once, is the genetic test to see if her type of Rb is hereditary or not.  I will try to keep everyone updated on here or you can always follow me Facebook and or Instagram to get almost daily pictures of both Darbee and Tanessa.

Darbee goes in for her next EUA (exam under anesthesia) on January 21st.  They will just look at her right eye and make sure there are no tumors starting on it.  She will have to have these every 2 months until we get the genetic tests back and then they can be scaled back until she is old enough to let the doctor just dilate her eye and look in his office. That will happen until she is around 7 when she will "outgrow" this cancer.  She will get her prosthetic on February 10-11.  Where Rhett has had one when he was little he really is not looking forward to the 1st meeting where they take a mold of the eye.  Things are still moving forward for this little girl and we are trying to move forward with our new normal in life.

Thank you all for all the support and prayers that have been offered.  They have helped so much and we are so grateful for them all.  We can never repay you all!!

Jen, our sister in law, has set up a Go Fund Me account. https://www.gofundme.com/3n9ktdyc