Making changes -- Procrastinating

Last night I had a bit of ADD. I started off preparing to pay medical bills for the months of January and February. But once I counted out 37 envelopes filled with bills which meant that Haven had gone to the hospital 39 times in 2 months and that just kinda left me mindless.

So I decided instead that I would look at the bills this weekend and do something more fun. So I have started to make a few changes to her site. I talked with Kris about building a web site for me. Hey, he's been making web sites for over 11 years so I might as well take advantage of it since it's free!!!

So probably throughout the weekend you will notice a few changes to her site. I want to organize everything on here because sometimes I have to dig through to find things I wrote about 6 months ago. Plus Haven has had over 15,000 visitors since I started this site in December 2007 when we were first diagnosed with the Neuroblastoma Cancer.

Haven's Visitor Map Since July 2007

Haven is going to help with some of the design changes so it should be a fun little project for us and it will give me a reason to get my mind off the many worries and concerns I've had recently.

A few changes but this is not the official site I want yet:

Haven's Story

ROHHAD Children


More to come

Home from the Hospital!!!

We arrived at the hospital around 8:30 am on Thursday to get ready for Haven's surgery. She was all happy. We hadn't really told her too much about it yet. She gets very anxious now so we waited until we got upstairs to explain it all to her.

When we got upstairs we met with the anesthesiologist, Dr. Elliott, and her eye doctor, Dr. Guyton. I really want to say how happy we were and are with both of these doctors. You are handing your child over to someone you don't know and have to really feel comfortable. Both of them made us and Haven happy. Dr. Elliott is one of the best anesthesiologist we've ever had at JH. I told Kris I wish we could request anesthesiologists each time, because I'd request him.

Haven got the "G"s on the side of each eye. This notes which eyes will be done and Haven needed both.

Heading off to surgery. Bluesy went with Haven. She said all her other babies were too scared to go to the eye doctor. Bluesy also had her eyes done, Haven said. Dad took her back - as I said before I only went one time and won't do it again. She did very well. She put her own mask on to fall asleep. The flavor of the mask this time - Popcorn. I was informed by Haven that popcorn flavor is very nasty!

She did extremely well through surgery. When she came out after round 1 we were able to visit with her. I only went back to see her for a short time - Dad stayed with her most of the time. I helped with holding her down to get eye drops in. Then they put her back under for round 2.

All in all - we arrived at 10:30 and were released from recovery room at the eye center around 4pm.

Haven was taken to the 4th floor of the pediatric building. She had a private room to recover in. About 2 hours after surgery they said she could have something to eat and she was so excited because I was going to get to feed her like a baby. We had lots of fun playing "Guess what food this is?". She was very happy to get carrots because as she says "they are good for the eyes".

Haven finally gets some sleep. She had a couple doses of Oxycodone and this really helped with the eyes. They were burning quite a bit. She kept asking for a mirror but we told her that hospitals don't have mirrors on the kids floor. We knew if she saw her eyes that she would freak out.

Dr. Paz-Priel came to visit us on the 4th floor on Thursday to see how she was doing. We were very happy he came by. Then her nurse from Oncology, Katie, called to check in on her. She was very happy but couldn't understand why Katie couldn't be her nurse over here.

As soon as Haven was conscious enough she wanted to make some phone calls. As soon as she got out of surgery she was begging to call Lauren. She had to call Lauren because she told Lauren she would. We called Lauren twice and left a message. Then when Lauren called back she got in trouble for not answering her phone and was told that she couldn't put her phone back in her purse incase Haven needed to call. It was very sweet. Sorry family - Lauren came first! :) But Lauren is her bestest friend she says.


Haven's port. She likes to check out her port every day to make sure it is looking ok. She also likes to look at it a million times when it's accessed. She said I had to show everyone how it looks and that it doesn't hurt when it's paper tape.

Finally awake on Friday. Haven was moved to the 8th floor for Inpatient Pediatric Oncology in the middle of the night. We had hoped to receive the Rituximab in the wee hours but were not able to get it until around 11am on Friday.

This is Miss Haven's right eye. They had to do both eyes. The doctor said the absolute way to check the eye roll is when they are asleep. We thought only one of Haven's eyes were bad but when she is asleep both eyes roll very far out and a lot of correction had to be done on both.

While receiving our chemo on Friday Haven woke up with a bit of energy - not normal for her. She wanted to walk around the floor and check out the play room.

We all played a couple of games and after about 30 minutes she got a bit tired. We headed back for a bit of a nap. Around 3pm we learned that Cyclosporin actually comes in two different types. There is the "N" type and the "S" type. Even though we specifically went over it with the nurses on the 4th floor and we showed them the box of her Cyclosporin we somehow received the wrong type.

We now know Haven gets the "S" type. However, this evening she received the "N" type. Haven's levels are checked twice a week and she should be at 200, anything over 250 puts her at a toxic level and we usually skip a dose. Around 3pm the doctors came in and told us that we received the "N" type and Haven's levels were at 389. We had to run tests on the liver and kidneys and they checked her over for blood pressure and watch for tremors.

Waiting on our tests to come back from the lab Haven fell asleep on the couch for a long time with Dad. Dr. Evelyn was very apologetic and very comforting in our wait for the results. Finally around 8pm the results came back and Haven was clear to leave the hospital. We got all excited and started to pack up when Haven reminded us that she still needed her port out!

Haven's nurse, Kim, came in and this was Haven's most dreaded time. She had been anxious about removing the tape from the port and removing the needle. She wanted to make sure this nurse knew how to do it like Nurse Katie does. She asked if they could make her sleep to remove the tape. But we made it through and Haven helped out.

This is a close up of Haven's eyes on Friday evening. Check out the difference. The doctor did an awesome job and we are very happy with everything.

Haven slept very happy last night. She slept all night and never woke up and I don't believe she even talked in her sleep. She woke up around 8am this morning and went back to sleep around 10am. We told her she could sleep all day and even at 2pm she is still asleep. :)

We are happy to have our baby back home. All of Haven's photos are uploaded in to her FLICKR account. You can click HERE to see all of them.

Update

A short update until tomorrow - as we were admitted to the hospital but luckily my phone has Internet!!

Haven did very well through surgery! She made a couple of phone calls tonight before her next dose of Oxycodone and Tylenol.

She went in to surgery around 10:45 am and we finally got her out around 4pm.

Her surgery was done in two parts. 1st part: major adjustments of both eyes. He found that when she fell asleep both eyes rolled off to the side really far and there was a lot to correct.

When she was coming out of the anesthesia from the 1st round we were able to visit with her. I only went back for a few minutes - Kris went back first and stayed with her for about an hour. I can't tell you how hard it is to see your child with blood-filled tears streaming down her face and what looked like fishing lines coming out of her eyes! It was very very hard to see her. The whites of her eyes are bruised, bloody, and just horrible!

The 2nd round of surgery they put her back under after checking the alignment from the 1st round and then they make final adjustments, remove all of the lines and strings hanging out of her eyes and wait for her to come back out again.

Haven was definitely admitted for the night. Kris and I have spent the past 6 hours wiping bloody tears from her eyes. She still refuses to open them so we have kept wet gauze on them all night. She keeps falling asleep and then waking with sharp pains through her forehead - she is staying on the Oxycodone for the night.

Oncology came in to check on her around 7:30pm - which was a nice surprise. And Nurse Katie called to check up on Haven to make sure she was doing well.

Haven will be transported to the 8th floor around 1am for her Rituximab chemo.

I will update more tomorrow. I have a few photos - although I was yelled at constantly about the flash of the camera! More info tomorrow - good night.

Thank you to everyone around the world that have sent Haven prayers and good thoughts! We truly appreciate everything. Love to all

Haven's Surgery

I was able to talk to a few of Haven's doctors and nurses today.

We need to be at the hospital by 8:30am tomorrow. Haven can not eat past 6:30am.....THIS IS THE HARDEST PART OF ANY PROCEDURE! Haven's surgery will begin around 10:30am. Do you even know how many times we will hear her ask for food during that time!!!!!????

I talked with Oncology and due to her at home chemo needing to be mixed with milk she will not take that until she wakes up but we will take the blood pressure meds - if Haven misses one dose of BP meds her BP rises significantly and we have to keep it down.

Once her surgery is over Haven will be admitted to the 8th floor instead of the normal recovery on the 4th floor. Haven needs to go to the 8th floor because this is the only floor that has Chemo Nurses (ha ha - that's how they're known). When Haven comes out of anesthesia she will begin her chemotherapy Rituximab - which should take about 6 hours to administer.

Summary: Surgery begins at 10:30am and about 6 hours later she will be in recovery receiving chemo for about 6 hours.

Haven will be monitored at the hospital for the night. We will update every as we can. We can't guarantee when we will be able to contact anyone - we will definitely be sleeping all day Friday if we're home.

Love to all.

Surgery Thursday

Anesthesia called me yesterday to discuss Haven. He had already spoken with all of her doctors and read all of her files. With complications she has had in the past with seizures, anesthesia, and breathing problems Johns Hopkins has decided that Haven will remain in the hospital after surgery. All of Haven's doctors agree. He said due to Haven's high risk and the rarity of her syndrome all of the doctors felt this would be the safest for Haven.

So we agreed. Really, I don't think we had an option. He had already done all of his homework on Haven and even read about ROHHAD. Usually we push for her to come home but I know Haven needs to be watched by the doctors just in case. I have to say I was extremely happy and probably helped me say yes because he took the time to find out about her instead of waiting for us to show up and ask about her.

Haven will still have her Cyclosporin levels checked and will still receive her Rituximab on Friday. They will bring it to her room and administer it as an inpatient.

Chemo Plan

Friday Kris and I met with Haven's Oncologist and discussed the Neuroblastoma Cancer and that they will keep a watch on the tumor and monitor that. We also discussed ROHHAD and Haven's current condition.

We have seen some positive results over the past 2 weeks with the Rituximab. She has been going potty by herself and she has been sleeping....or at least she did for a week. Since Friday's dose of Rituxan she has not slept. I really hope this evening is much better.

We also learned that she will be on her current chemo plan for about the next year. They will reevaluate in 6 months and continue on for another 6 months after that. So we are looking at hopefully going off the chemo this time next year.

Haven's Oncologist also gave me a bit of homework - which I haven't started yet. There are a few questions we need to ask some of the other moms to maybe come up with another theory and may require more testing for Haven.

As for now Haven remains under the care of Oncology (as she will for a long time), Pulmonary, Endocrine, and her Pediatrician.

Rituximab Friday

Friday started with a bang......accident on the freeway and it took us almost 2 hours to get to the hospital. Doesn't make for a great start when you know you have 6 hours of chemo to get through. Plus we have to drive two cars so I can go to work.

Haven knows what to do at the hospital. She goes in immediately and gets set up to have her vitals taken. She was wearing one of my shirts. She loves to wear my clothes. We were very happy with the results. Still staying at 72 pounds and now we are 41 inches tall. Growth is super important with ROHHAD. One of the issues with ROHHAD is growth deficiency and Haven stayed at 39 1/2 inches tall for over a year.

We had LOTS of problems with getting the needle in to the port. It was horrible but her nurse was trying to make it as easy as possible on Haven. She put the first needle in but when she tried to draw the blood nothing was coming out. She put the flush in to it and it squirted out Haven's chest. Kris couldn't even watch and I had to keep looking away. Her nurse took the needle out and pushed on Haven's chest and all the saline flush came pouring out of the hole in her chest.

After feeling around a bit her nurse realized the port had floated and was turned sideways. OUCH. Haven had been saying it was bothering her for the past couple of days. Somehow the port flipped on to it's side even though it's sewn down inside. So Katie (her nurse) flipped the port back and had to hold it down really tight to get the needle in. Haven definitely felt it but never cried or made any noise.

Finally the port works and Haven begins to draw her blood. She always does her own blood and Katie just loves it. Haven helps out so much. She was definitely uncomfortable with the port today.

This is Haven's chemo set up. As you can see multiple nurses have to check off on the bottle to confirm the correct Chemotherapy is in there, the correct dose, and the correct name. I like to see all these little check marks and initials.

Kris and I met with Haven's Oncologist while Haven was getting hooked up and prepared. She fell asleep almost instantly.

When I left about an hour or so later she was barely awake but really out of it. She was just kinda sitting there staring off.

Around 2pm I received a text from Kris that they were getting unhooked and leaving the hospital. Then I received another text a while after - Haven wasn't doing well and she had pottied all over herself and her bed and was soaked. She was changed and it happens again. Then she realized her toes were hurting and her foot was swollen. She couldn't get her shoes on and was freezing. She hung out at the hospital for a bit longer and the nurses gave her a heated blanket to wrap up in. Kris finally left after a while with Haven in a wheelchair and a big blanket wrapped around her still unable to wear her shoes.

They made it home and Haven was sick and tired the rest of the night. She was asleep instantly after getting home and stayed asleep until 7:30 when she woke up to eat a very small amount and went back to bed. See her blue whale...that's Whaley! :)

Saturday she was much better but we kept her low key. She was upset because Stryder was here and she couldn't see him on Friday and she definitely had to see him on Saturday. She got to see him for a little bit and Sunday was much better for her.

She is still having quite a few issues with the port. Her toes are split pretty bad but she is feeling much better.

Saturday and Sunday Haven did not sleep at night. Sunday was Kris' shift and I believe he maybe got 2 hours total of sleep. She was awake about every 20 minutes. I hope tonight is a much better night...she has doctors at 8am tomorrow!

Hanging with Stryder and lots of thank yous

My brother came home from Iraq last Friday and Mr. Stryder came to visit us. These are all from Sunday - when Haven was feeling a lot better.


Stryder is in love with Grandpa B-Honey's back yard and all the ROCKS! He is a huge fan of throwing the rocks and especially the BIG ONE! He is just so fun to watch. He runs around crazy. Definitely not the way I'm used to seeing a child!


Stryder gave Haven a hug but she just doesn't know how to act around him. She's so still and doesn't know what to do around kids. She usually just sits back and watches him.

Haven received this beautiful big puppy (hanging in the background) from a MACS friend. He is absolutely AWESOME! I love him so much. He's like a big body pillow. He hangs out in Haven's bed....we'll he takes up most of her bed! There were a bunch of stuffed animals and gifts in the box. THANK YOU!!!!

This is a beautiful Easter basket put together by my friend at work, Aleah. There were a bunch of crafts inside it - we made a caterpillar out of the beads inside it!

This was one of the stuffed animals that came in the MACS box. The cute little knitted hat was made by and sent to Haven from her Aunt Martha in Utah. Isn't it just adorable! I couldn't believe it. Thank you Aunt Martha.

Haven also had a couple of knitted hats made for her by Aunt Martha! Check out the kool-aid moustache! Now that is what being a kid is all about!

Haven received the cutest duck and books in a package. She was screaming and freaking out. She loves him so much. His name is "Littlie".....he is currently in her bed sleeping with her right now. She has been with a blue whale that she received the other day. His name is "Whaley". I will put a picture of him up - he was another gift she received. Believe me - all these animals sleep with her...it's amazing that she can still fit in her bed.

Shirley Anderson sent Haven a package with a wallet inside. This surprised Haven - there were photos inside, Old Navy gift card, and play money. She loves it. Shirley put the package together, Heidi gave the wallet, and Kelly gave the money. Absolutely great! She was so excited about the photos and couldn't understand how Shirley had photos of Grandpa Beard Off and Grandma Sing! :)

Aunt Dottie and her friend Andrea did it again! They sent Haven a beautiful package of custom made clothes to fit her. She received lots of spring clothing. Even capris and pink velvet pants. Haven has chemo tomorrow so I wonder what she will pick to wear! :)

Thank you everyone - we love you.

We're tired

Sorry everyone - I had hoped to have a bit of energy this weekend to get some photos up and an update on Haven. But it has been a weekend of no sleep and I just didn't even care to turn the computer on. I didn't even have my phone on this weekend.

I will hopefully get some updates on here Monday evening.

Love to all

Quick Post

Hi to all......I'm extremely tired even though I was asleep by 9:30pm last night.

Haven had a pretty rough day on Friday with chemo. She did not handle it very well and had an even rougher time at home that evening. Haven usually doesn't feel well about 2 days after chemo so it was very odd for her to have such a bad day. Her nurses were concerned as they had never seen her like that either.

I will give a better update tomorrow. We tried to spend a bit of time with my brother today. He just arrived home from 15 months in Iraq. So we have been trying to enjoy the day. Aunt Katie and baby Stryder are visiting as well.

I will give more updates tomorrow and maybe even take a picture or two!

Love to all

Medical Updates

Haven has Rituxan tomorrow - her full day of chemo at the hospital - and it has been requested by her Oncologists that I join Kris and Haven at this meeting to review everything. I do not normally go to the chemo appointments but since her doctors are urging me to be there I will join them.

(PS: Hi Oncology Doctors - they told me they read Haven's blog so this will be a test!)


What I know:

Haven will remain on Cyclosporin twice a day for a minimum of 6 months
Haven will remain on Rituxan for a minimum of 6 months

They will not alter this schedule or make any changes. I have been and will continue to keep a daily log of Haven and monitor her for any changes - positive or negative. At the end of her 6 months her doctors will discuss her files with the medical board for further review.

Haven is still on schedule for surgery on March 26th. Haven is at a high risk on this surgery due to the ROHHAD and the chemo. The biggest concern for her doctors is her being in anesthesia. The risk of her stopping breathing is significantly higher due to the ROHHAD. We have already been called about Haven staying over for observation - but I have requested that this only be done on an as needed basis and not automatically.

I also spoke with Haven's nurse today - the ABG (Arterial Blood Gas) will also be performed during surgery. She has to be under anesthesia to have this done so we had to make sure it happened at the same time as the other surgery. Haven's ABG will be done through her wrist. I am told she will have more pain from this than the actual surgery.

On March 27th - Haven will be back at the hospital for her full day of Rituxan.

April 9th - We will meet with Haven's Pulmonary doctor - Dr. McGinley. He will begin to handle Haven's case from this point forward - re: respiratory functions. He will review her ABG results with us and begin to keep a constant monitored file for Haven.

Early May - We will meet with Haven's Endocrine doctor Dr. Cooke - for her 6 month check up. We will look at her growth and talk about her immediate future where he is concerned. He has been working close with Haven's Oncology team and the Orthopedic doctor.