Haven says THANK YOU

Haven wants to thank everyone that has sent stuff to her. She was overwhelmed this past week with everything she received. Some items below are:

Grandma Sing and Grandpa Beard Off have out done themselves with cards. Haven probably received about 200 cards at least from the kids in St. George, UT. She was so overwhelmed with emotion she was crying and couldn’t stop laughing. She’s never received so many cards. We have decorated our stairwell with all of the cards. She couldn’t believe how many kids were calling her Princess Haven and knew all about Jello and Hannah Montana.

Aunt Dottie and Uncle Jim sent a package to Haven with some beautiful clothes. Which, by the way, I am having a hard time getting them off her to wash them. I had to hide them so I could get them down to the wash really quick. I also received a Low Sodium food book from Aunt Dottie. It even gives you the sodium at most of your favorite fast food restaurants. Kris received $50.00 for gas. Which is awesome…next week we have 3 days of chemo back to back.

Grosse Pointe Farms Police Department sent Haven a $100 gift card to WalMart. THANK YOU SO MUCH!

Dr. Cooper’s office sent Haven more books to read and a beautiful card. She also got a beautiful bracelet that she’s been wearing.

Some of the ladies at work made Haven some low sodium food and brought it to me today! Thank you Joyce and Connie!

Heather’s mom sent me two of the largest bottles of hand sanitizer that I’ve ever seen!

A huge thank you to everyone!

A Steroid Story

Last night between the hours of 2am and 4:30am Haven got sneaky! Kris checked her around 2am. I never heard her but for some reason I woke up at 4:30 am and freaked out. I even had to jump over to her bed (it’s about a foot from my bed) and feel around. She was missing. I took off down the hall and yelled for Kris. We found Haven. She was asleep on the couch with cartoons on. Next to her were: 5 banana peels, 7 jellos (stacked up), and 1 apple eaten to the core. She had eaten all of this within a 2 hour period. Since she looked happy sleeping on the couch I left her there. About 6am I hear – “Hello” “Anybody” … “Good Morning”. So she comes in to wake me up and I ask her why she ate all that food and if she was feeling sick. What does she say:

My doctor said I could eat those. Everything has no sodium and I ate the clear jello.

UUUGGGGG! I tried to explain that she can eat those but NOT all at once. It was funny but a big reminder to lock the bedroom door and lockdown all pantries and the refrigerator.

I'm so happy her dose goes to 1mg/kilo on Tuesday instead of 2mg/kilo!!!!

Next week schedule

We have a busy beginning of the week.

Monday we will be at Johns Hopkins at 9am to meet with Anesthesia for her MRI. Her MRI will begin around 10:30am and will go for about 4 to 5 hours. If you remember, March 3rd they found a spot on the MRI scan (1 month after surgery) that looked like a tumor had started growing back. They took measurements and we discussed it all. Her doctors gave her 2 months before the next MRI to see if this has grown and if it is another Neuroblastoma tumor.

This Monday we will once again scan her from head to toe to check for any other cancer spots and to check this area in her abdomen again. I can only hope it has disappeared or not grown in 2 months. If it has grown or is still there we will have to make a decision of surgery or an additional type of chemo.

Tuesday we will be back in the hospital for another dose of Rituximab. So far she is handling this chemo pretty well. It wipes out all her energy for 2 days but so far we haven't experienced any more chest pains or coughing issues with it.

I will update more after the MRI results get back to us.

Update from the week

Grandma Virginia has been doing a great job with Haven this week. I just want to thank her – I know Haven is a bit more moody now with all the medication so it’s not an easy task. Plus she can’t really go anywhere due to our fear of germs! We’re talking about getting to a park or some shops in the antique district this weekend.

A few HUGE thank yous to send out as I am left speechless with all the help and support we have been receiving from people around the world – most of them we have never met or even talked to.

Aunt Jan and Uncle George Gnesda in CA – Thank you so much. They sent us $300 for Haven. Grandma Virginia went out and purchased a “bank” for all of Haven’s money as I am keeping it completely separate from our money. I want it to be for anything she needs – not general stuff we need. We sincerely appreciate it.

Shirley Anderson from St. George, UT – These are friends of Gpa Beardoff and Gma Sing. They sent Haven a beautiful light up statuette that is so adorable. She had it on all day yesterday. She was so excited about it.

Aunt Candy and Great Grandma Ohio – sent Haven a bunch of puzzles and an Ohio ball (pine cone). She thought it was so funny she had to tell Gpa and Gma B Honey next door that she got an Ohio ball. If you’ve read the story of the MD balls you’ll understand.

Sam and Pat from Little Rock, AR – we have never met them but they are good friends of Gma Virginia’s – who met them in Germany. Sam helped to start the Ronald McDonald house in Little Rock for the needy children there. I went outside around 8pm last night to find a box as big as me sitting on our porch. Haven opened it up and inside were 10 packs of diapers! AWESOME! We were beyond excited.

Christy Kelso – our good friend’s Mike and Tracy’s family – sent Haven a WalMart card and a beautiful picture of her with Scott (her grandson). We know Scott very well but have never met his Grandma.

Briggs – this little boy in Utah sent pictures to her when we first found out about her cancer. We just received some more pictures and a cute little note. Thank you Briggs – Haven is working on a picture for you.

Brown Dog – thank you Miss Brown. Haven loves getting pictures of you. Keep ‘em coming!

My co-workers – some of them are experts on low sodium foods as this is what they cook themselves. They have offered to make low sodium foods and freeze them to give to me for during the week.

It’s just amazing how many people think of her and love her but have NEVER met her. She’s an amazing girl and to be around her is so much fun. She is so smart I can’t believe it. She has been sending thank you cards each day to everyone that sends something to her. She is writing in them herself so we hope all of you enjoy.

Love to you all!
Have a great weekend.

Is it bed time yet?

Oh I’m tired. I believe I passed out around 10:30pm last night – can’t remember. I woke up with Haven standing next to me asking me for a diaper. It was 2:30am and after getting her changed she got in bed with me. Then she decided it was morning time and thought she should have breakfast and color. I almost went insane. She never fell asleep but she did finally let me sleep. I woke up intermittently throughout the night and she was watching a Barbie cartoon over and over. She knows how to work the DVD remote so she could fast forward and play her favorite parts over and over again. I enjoyed a small nap in the car today while at work.

Needless to say – I don’t like the steroids. My child is hungry 24 hours a day and it wakes her up at night and she begs for food. Then she doesn’t sleep at all which means I don’t sleep. Her attitude is more aggressive – as if I needed more of that. Poor grandma has been dealing with it all day today. Sent me a text that Haven is refusing to wear her eye patch and is just being stubborn about everything. Then I can’t really get mad at her or anything because I know it’s her medication and lack of real sleep that is changing her.

Haven has lost 2 pounds – which I congratulate her father on. He has been extremely strict on the no sodium diet with grilled tofu and grilled eggplant dinners and it has helped her tremendously. I have never been able to say Haven has lost weight. So I gave him about 5 minutes of bragging time at the hospital and then stopped that pretty quick! We’ve had a few arguments about the no sodium but now that I see something good come of it I will stop arguing about it.

Hope everyone is doing well in their part of the world…..we continue to keep moving forward with this.

Children's Neuroblastoma Cancer Foundation

Another day of Rituximab

Grandma Virginia came in on Sunday to stay with us for a couple weeks. Haven has been all over her since she got here. I don't think she lets Grandma breathe. Stands by the bedroom door waiting for her patiently to get dressed and come out. :)

She had another big day of Rituximab today. We watched her as she slept through most of it. It completely wipes her out of all energy for the day. It's 7:30 now and she's been asleep for an hour already. Coming in and out. She received some cards today from people and that made her happy after such a long day. Our race team sent her another WalMart card (Princess one) so we're going to let her pick something with that one - they also sent stickers and bracelets! Very cute. Thank you!

I had the doctors check her today for her cough but they said her lungs were clear and she has a little cold so we have to watch that. We asked when or if her immune system is completely shut down yet and they told us she is "moderately" shut down right now. So she still has a bit of an immune system and probably why she wasn't completely sick. I got another count chart today and if you compare to last week you can see how her body is changing. They say she will be completely shut down around the May 8th treatment. We have 3 treatments that week and that will mark the day she is on her own to not get sick.

A few of her counts:

White blood cells last week: 13100 and this week: 5180 (low range is 5500 and high is 15500)
Red blood cells last week: 4.70 and this week: 4.84 -- she's normal here
Lymph number last week: 410 and this week: 370 (low range is 1300 and high is 10100)

There are a million different numbers on here - I don't know what half of them are but the doctors assure us she's ok even tho she's high on some and low on others. There are so many changes between the 3 weeks of counts.

We also had a social worker talk with us today and they gave us a bunch of packets of organizations that Haven qualifies for with her cancer. So I filled them all out today - we can use any assistance we can right now.

1. Believe in Tomorrow National Children's Foundation: they provide a "retreat" house/cabin in the mountains or at a beach and you choose which you want to do. They set you up for a week, you just pay for your gas to get there and food while you're there. They provide a 2 bedroom unit. Great to get the children out and have a vacation during this time.

2. Casey Cares Foundation: They provide tickets for the family to go to the circus, ice shows, and other fun outings for the kids. If the child is not able to go outside or be around crowds they bring the party to you. They pay for and order it to your door - dinner and movies and big surprises for the kids on their birthdays.

3. Matt's Helpers Foundation: Inspired by a boy named Matthew that passed away from Neuroblastoma they help families with children that have life threatening cancer - especially Neuroblastoma. Each quarter they send a huge care package to the child with toys/gift cards to grocery stores & department stores/and other items to make the child smile.

4. Make a Wish Foundation: We've all heard of this one. Where they come in and talk to the child and ask them what their biggest wish is and they fulfill it. I have all the paperwork to sign her up for this. I'll be working on that one tonight. My aunt tried to sign us up but it has to be a parent or doctor.

5. Jeremy Foundation: This offers assistance to the parents and child for lodging, gas to/from hospital, food at the hospital, transfportation, and even air transportation to your hospital.

6. Children's Roads to Recovery: Also an assistance program for meals, gas, lodging, transportation for the parents and child.

Like I said - I filled them all out and hope to hear some good news soon.

Need to send thank you notes!!!!

I have a lot of thank you notes to send to everyone…just know they are coming. I promise. I am just hoping my own sickness will end soon to give me a bit more energy. We’ve received a lot from a lot of people. Haven gets so excited when she gets mail!

My grandma sent us $50.00 and also sent Haven the movie Alvin and the Chipmunks. She absolutely loves the movie and we’ve seen it --- uuummm about 100 times!

Kris’ grandma sent us $50.00!!!

Aunt Rose sent us $50.00!!!

Scott and Melissa sent Haven a huge box of craziness – Playdoh, stuffed animal, books, candyland game, magnetic drawing tablet! Awesome. She loves it.

Dr. Cooper’s office team sent Haven a very cute bear with a stethoscope and some books!!!

Oh yea – and I personally don’t think I gave my co-workers enough thanks! We went to Walmart to get diapers and the lady came back and told us the total was $228.00. Well we knew we bought Walmart out of diapers completely but didn’t know it was that much. We started to give her more money and she started laughing. She said the $228.00 was what was left on the card not what we had to pay! THANK YOU EVERYONE! We really wanted to get the Ionic air purifier but couldn’t afford them! With the card we were able to get a big one for the living room and a small one for her bedroom! Thank you so much!

Baxter Heparin Drug Recall

The use of the blood thinner drug Heparin made by Baxter International Inc., has been linked to an anaphylactic reaction which causes a profound drop in blood pressure, difficulty breathing and sometimes vomiting. This adverse reaction happens within a few seconds of the injection of the drug, and can be fatal. This reaction is not the same as Heparin-induced thrombocytopenia.

The FDA updated its report of deaths associated with Heparin use from 19 to 62 deaths on April 8, 2008. Additionally, hundreds of severe allergic reactions have also been linked to contaminated Heparin. In the latest statistics on Heparin-related fatalities, the FDA's month-by-month adverse Heparin event reports show that 47 of the 62 deaths occcured between November and February

Yes – I have inquired with Johns Hopkins on the type of Heparin they use on Haven. JH uses the USA made Heparin not the China made Heparin from Baxter. They have not had any issues. I actually saw this on the news while in the hospital and was able to grab someone immediately because we were about to use it on Friday last week. It's not like people who are sick and need these medications don't have enough to worry about all ready! But Haven is fine.

Help from everyone! :)

Another big thank you to send out – Namrita, Eddie, David, and Brian! Our race team pulled together and sent us a WalMart gift card for Online. :) We really appreciate it and we are overwhelmed with how everyone is coming together to help us anyway they can. I’m excited about this card because we need to get a blood pressure/heart monitor for Haven. I was using my grandma’s and my dad’s so it will be nice to have her own.

Namrita is my nutritionist too….she’s an expert and just recently received Georgia State University Graduate Student of the Year! I’m going to her for some low salt, low cal food ideas. Haven loves Escargot and Sardines……and those have just been wiped off the list of foods to eat. I honestly have never really paid attention to sodium – but a low fat, low cal hotdog made from turkey has 460mg of sodium!!! Lately Haven has been living off many different ways to eat Tofu and steamed veggies that are not salted. Oh, and I thought, what a great idea – I’ll give her some chicken soup because that makes you feel better…..AAAAAHHHHH…..it’s full of sodium. What can this kid eat? I would have the hardest time on this diet, I need my salt more than I ever need sweet.

Now I’m rambling –

THANK YOU EVERYONE!

Rough night

Just a quick one before I join my girl to bed. Tonight is a rough one for her. She's very achy and just plain doesn't feel good. She wants me to sleep her and massage her legs and back all night. She said I didn't need to sleep - I could just massage her. Then she told me she was worried about me. I asked her why she was worried about me. She said because she hasn't slept with me for two nights - she's been with her dad. So tonight she wanted to sleep with me but I had to sleep on the floor next to her bed. I said I'd sleep in her bed but she says it's better for me to sleep on the floor. :) She's very particular who she sleeps with. She wanted to be with dad for the past 2 nights because she says she hasn't been with him a lot. Which is really funny because she's with him all day while I'm at work.

She's so adorable - I really hate all of this.

Off to bed and enjoying a night with my angel. At least until she starts yelling in her sleep and wakes up around 1am to watch a movie with me and ask for breakfast. :) I know the routine.

Another day of Rituximub

We had our second treatment of Rituximub today and we had been told last Friday that they would double the dose today so we tried to prepare for it. Got in on time and got Haven set up. Her blood pressure was great and had actually grown a centimeter so that made me excited. Her medication has a side effect of slowing growth - which I don't want with her weight gain.


Haven likes the small wheel chairs and there aren't many around. So when we get to the garage Kris runs around trying to find a chair while I get her port lotion on and get her gear. She got two new masks that are beautiful. This one has colored doggie feet prints all over it. It also doesn't go around the head - the ones from JH kept pulling her hair and bugging her and they would also hit her port if she put her head down. Dad found the masks and ordered them for her. She was not as nervous this time and Nurse Katie was back.

Haven helped (or took control) of cleaning her port and wiping the lotion off. I get freaked at this stuff for some reason. You'd think some of my med schooling would make me ok with it but when it's your child it's just different. Haven likes to watch everything and be part of it all - which is great. Dad usually helps out on this stuff.

Drawing her blood for the week. I just can't believe how well Haven is with all of this. She never cries or gets upset. She just waits to do the parts she can do herself. Katie even let her take the tape off the butterfly which completely freaked me out. I could see it pulling and I know there is a needle in there that's as big as my pinky finger (slight exaggeration)!

The day was a bit quicker. We were out at 2pm today due to the doubling up the dose. Which is great because the 1 hour car drive makes her sick. Haven slept almost all day. You can see it wearing on her now. When she was sleeping we noticed that her circles were getting darker and her eyes looked sunken in. She slept from 10am until 1pm. Even slept through them taking her temp and BP every hour.

We got home and about an hour later she was complaining of chest pains and hard to breathe - she has a slight wheeze and a very phlegmy cough. I tried to get her relaxed. Kris was not home and my mom and dad weren't home yet. I rubbed her chest and tried to calm her down so she wouldn't start hyperventilating again. Kris came home and I ran to get him to check her out. She was very uncomfortable and really hurting. So I called Oncology. They ordered us to Upper Chesapeake Hospital for chest x-rays. We woke Haven up (she had quickly fallen asleep). This was about 40 minutes after it started. Haven woke up and immediately started telling us she felt better. Haven is very smart and if she knows we're talking about going to the doctor she will come up with a good reason that we shouldn't go.

While waiting for the Oncologist to call back again I looked up her medication paperwork. Rare symptoms were everything that Haven was experiencing. So I started to get a bit freaked out.

After much negotiations and another call to Oncology and them hearing her, they canceled the order and said we didn't have to go but that if she has any more pains we have to get to the ER.

Needless to say - tonight we have her on super bed rest and we didn't even make her go to the kitchen to get all her medication!

UUUGGGG ---- this is only our 2nd dose of the Rituximub! I'm gonna be a basket case by the end. I finally have a good reason to look forward to my birthday next year. That will mark the end of Haven's chemo!

Big help from work!

I want to thank my team at work...Under Armour has been awesome through all of this and I couldn't ask for better support from my team. I went to lunch yesterday and came back to a beautiful spread of cleaning products, movie, and coloring items. AND a WalMart gift card on my desk. Thank you so much Emily, Jean, Chris, Heather, Meghan, Ryan, Mark, Mike, and CJ. I am so grateful!

The mailman came to visit!

Haven was beyond excited on Saturday when we went out to get the mail. She had so many packages from everyone......THANK YOU....she gets more mail than I do...I try to slip a few bills in her pile but she gives them back! :)

This is a Hannah Montana purse and art work from her cousin Emily! I recently learned that Hannah Montana is NOT Miley Cyrus! :) Haven was sure to teach me how to tell the difference.





She got a card, picture, and a dollar from Grandma and Grandpa in Utah. She also got a beautiful blanket made my Grandma that she takes to the hospital with her. She's saving all the dollars she gets for a Light Sketcher.







Dr. Coopers entire office sent her a card signed by everyone and in the package she got a sucker, pencils and lots of coloring pages! Expect to get some in your return package from Haven. She's been working on it between naps.

Beautiful tiaras made by Aunt Martha. Aunt Martha battled breast cancer a couple years ago and has been in remission and had a baby girl recently. Luke and Phillip also made a little card for Haven and we added it to her wall.

Here is Haven's wall of cards and art. Al the cards she receives, pictures of people, and drawings go up here for her to look at every day.




We really want to thank everyone for responding to her love of getting mail. She looks forward to the mailman every day. We're very appreciative.

To Both Girls!

This song is for both girls. Signed for Kendall and Sung for Haven. One of my favorite songs and I think of the girls every time I hear it. The song is "So Are You To Me" by Eastmountainsouth

Something other than hospitals!

This weekend was nice on Saturday and I could hear the lawnmowers going. Haven kept me up most of the evening on Friday watching cartoons. I decided to get up and honestly - went insane. I couldn't let Haven outside due to the humidity and mowing so she was a little sad. I took her over to my parents and she hung out with my mom all day. I did lawn work for 5 1/2 hours!! I even helped my dad rake and mow his lawn. What was wrong with me? Well I actually used it as a therapeutic device and set the iPod on forever. I had a lot of fun until the very end when I realized I had blisters on my hands, cuts, scrapes, and beaten muscles.

Then Sunday my dad and I were up early and I decided I would plant flowers!!! If you know me you'd never know I'd be in to this much yard work. The weather was not as humid so I was able to let Haven out for a while with her mask on. She wanted to help with flowers so we got her some gloves and wearing her beautiful new mask her dad got her she bagged the grass that I dug up. She was tired and worn out after about 15 minutes. So again she hung out with my mom the rest of the day. I dug and dug and dug and planted and played in the dirt from 10am until 6:30pm. CRAZY!!!! This time my legs and knees were bruised.....my back was dead. They were laughing at me because I couldn't even stand straight.

I made a note to both my dad and Kris - imagine: Small woman out digging with a weird thing (has spikes on it) in the dirt for 6 hours and two grown men just standing there pointing and telling me where I missed. Kinda like slave labor! :) They worked hard tho but not as hard as me.

Kris washed all of the cars and set up the deck to make it Haven proof so she could actually go outside. It was sad to see her standing at the door watching us do the yard.

PS: Candy - we have 2 large 55 gallon trash bags full of Maryland balls for you. Haven said to send them all.....look for your package in the mail! :) Love you.

Day 4 - Cytoxin

Friday was Cytoxin day. Our biggest day of medication. We had to have lots of water to start this one. Haven was ready and woke me up at 6am and immediately asked for her water. She had 4 bottles (adult size) by the time we go to the hospital at 9am. I was amazed at that she could even drink that much but she knew the doctors told her she had to. One thing Haven is awesome at is following what the doctors say and taking her medication. We got in to the hospital and they were overly amazed at how filled her diaper was and she was proud to show it off.

They were able to start her chemo about 30 minutes after we arrived. This takes an hour to administer. Then there is about 3 hours of Potassium Chloride and then removal of the "butterfly". Which Haven did not want taken out, she believed it helped her sleep better.

This is when they were removing the butterfly. I know Haven would be upset if anyone saw this so I had to censor some of it! The butterfly was in there pretty good, didn't want to come out.

She did pretty well today. They gave us a prescription to help with vomiting. We started noticing she was getting dark circles around her eyes and you can see her hairline changing in the photo. We also noted that she has gained 3 lbs this week. So we're kinda freaked out about that.

Drive home dad sat in the back with her incase there were any problems and I drove as fast as I could (I don't like to speed) and we got her home and had her rest for a while. Honestly, I'm trying to remember and I don't know what else we did. I think I went to sleep early....Oh I did. Then she woke me up at 1:45am to change her diaper and she stayed up until 4:30am watching TV. Then we were back up at 7:3o watching cartoons.

She did pretty well thru the night. Had a slight temp and got a little sick but otherwise pretty good.

If you'd like to help....

Kris and I are not the type of people to ask for help...we just don't do it. We are very stubborn and do things our way and just try to figure it all out along the way. Recently we have realized we can't do this by ourselves. We need the help and we have had so many people ask how they can help and what they can do. There are a few things we are learning as we go and anything is appreciated.

Some of the major things:

1. Diapers - WHEW! Haven can pee out 20lbs of fluid every 45 minutes now. They have her hooked up to fluids all day and she has to drink so much during the day. Her medication has turned her in to a faucet! I'm changing diapers every 30 mins to 45 mins. There is only one kind of diaper she can wear for her size so it makes it difficult. I'm using 2 packs a day now and they are about 15 dollars for 13 diapers. They are GoodNights 65-120lbs. Red package. I'm specific about them because they are the only ones that fit her.

2. CLEANING PRODUCTS - this is crazy. I have never cleaned so much in my life and I'm starting to feel like Cinderella but without the hopes of going to a disco and I don't have any birds and squirrels helping me. Carpet cleaners, furniture cleaner, dusting stuff, rags, towels...it doesn't matter....we're just going through it like nothing.

3. PURELL - we use so much hand sanitizer in this house we're rivaling Johns Hopkins. I almost shower in hand sanitizer now. I follow Haven around putting it all over her (yes I drive her crazy). But she knows now that you have to wash your hands or you can't touch your face and port stuff. We looked into getting the ones that you put on the wall, like the hospital, but the bags of sanitizer was so expensive we stuck with the hand pumps from WalMart.

4. CARDS - Haven loves to get cards from everyone. When she receives them her face just lights up and she is so excited and she hangs them up on the banister. Pictures of you are great too....we keep them with the cards because she likes to look at them and talk about them. So please - if anything for her - send cards addressed to her. If you need the address please email.

5. Gas cards - oh yea, we use gas like it's delivered to us from the oceans. Baltimore is just enough to drive you insane especially the closer you get to the hospital.

6. Grocery cards - this was great. I finally had energy to go buy groceries on Tuesday with my dad. I go in to the hospital on Wednesday and am told that 95% of the food I just bought Haven can't eat. NO SALT! What...I've never had to worry about that! So now I'm trying to find extremely low sodium, super low calorie, and even lower fat food. What the heck is that? So far, Tofu and no salt veggies and fruit. All of you know I DON'T COOK so I'm having to learn. Microwave dinners aren't going to work now!

I'm sure they're will be different crazy needs a long the way but these are what we are finding to be the hardest right now. We're loading up on trash cans, furniture covers (feel like I'm in the 70's with plastic on the couch), Lysol and anything else she may need.

The biggest thing for Haven is to know everyone is thinking about her and she really does love cards and pictures. She'll even drive me crazy to send some back to you.

Thank you to all - Love ya
M

Day 3...IVIG....

Well, we are exhausted. This is hard. We got up at 5:45 am to start the day and get Haven ready. Kris ran around the house picking up anything we didn't get to the other night. My mom gave us a wonderful gift of house cleaners. She had 4 people come and clean the house top to bottom today to ensure Haven is in a clean environment. It was so nice to come home tonight to a super clean house. Haven just talked about how nice it smelled.

Day 3 is leaving us extremely worn out. My girl....well, my girl is just beautiful. We arrived at the hospital around 8:45 and got started immediately. I almost didn't have time to grab the bags off the chairs and we had to run in to her room. The days are so long so they don't waste any time getting her hooked up to machines.

They hooked up all her lines in to her port and within 15 minutes she was passed out. She just couldn't stay up - she ate her cereal and was out. This medication causes her to turn in to a zombie and she can't even talk to you. She just stares at you with a blank look. She didn't come out of the zombie state most of the day.

By 3:00 pm she was a bright pink color and had another fever. The nurses gave her some tylenol and flushed the port and then wrapped her back up. I can tell this medication is now really built up in her system. The steroids cause her to turn pink and the other medication is giving her a lot of fevers and shakes. Or she just starts sweating like crazy and her lips get numb.

We've mostly been dealing with a lot of diarrhea. Tuesday I was warned that the Prednisone would make her have very aggressive behavior and be constantly hungry! GREAT!!! More of what we've been trying to fix for the past 2 years. Well, 3 days of it and we're seeing it. I get yelled at all the time and am told some things I can't even type on here.

What the nurses haven't learned yet is that locking Kris and I in a small 8x10 room for 8 hours at a time is not the brightest idea! Then throw Haven in there who likes to yell at us....well it's definitely not a quiet room! :) But around 11am today Haven was passed out in her bed and Kris was sleeping on the sink in the room and I was finally relaxing.

Tomorrow is a big day for us. We have been warned a few times about the Cytoxin from the doctors and nurses. We were prescribed another new medication for vomiting. They told us to expect that all weekend so I'm driving with a trash can in the car tomorrow. My house has more medication in it than the local pharmacy! We are keeping track of medications on the calendar. We can't miss any and some of them are Friday, Saturday, Sunday only.

I'm hoping for the best tomorrow....I'm definitely afraid of what's in store for us now and the rest of this year. We just can't believe this is happening. How can so much medication be ok in such a little body?

Day 2....IVIG

This is her IVIG medication. 300mL and it takes 6 hours!

My girl before heading in to the doctor's office!

Pictures are of this morning. She now wears her mask when I drive
(construction areas can really make her sick) and when we get into the
hospital.

Today we arrived a bit earlier in hopes of getting out before 4pm,
unlike yesterday. Well it didn't help, we still left around 4pm.

She had a weird day today. They can tell her steroids are kicking in,
she's on a pretty high dose for the first 2 months and you can tell
after only 2 doses!

She passed out from 9am until noon and started spiking another temp.
She woke up and had some pretty bad dark circles around her eyes which
kinda shocked me after only 2 days of meds, we have a whole year! She
was very lethargic and tired and kinda mumbling words together.

We left again around 4pm and headed home. We were met with an accident
on the 95 that backed us up for 13 miles. Took 1 1/2 hours to get
home. That was too long for Haven. She was feeling pretty nauseous in
the parking garage and started screaming she couldn't breathe. I
believed she was having a panic attack and let her take the mask off for
a minute before we took off. She was pretty upset the whole drive and
feeling very sick. By the time we made it home my car was a mess!!
Lets just say she was not feeling well from either end.

Got her relaxed and loaded up with the rest of her at home medication
and put her to bed.

Til tomorrow!!

Day 1

This was taken about 10 minutes after we were released. She was so tired and a little freaked out about the mask.

This the Rituximub

Well we got into the hospital cancer building around 9am to start the
first dose of chemo. Today was the first administration of the
Rituximab. I really wasn't sure what to expect and the nurses and
doctors reviewed everything with me before we began. I opted to have
her take her Benadryl by IV because they said it would make her fall
asleep. I don't want her to be uncomfortable and sleep makes the time
go quicker!

After about an hour of the medicine Haven started to get really cold and
shortly after started shaking. They came in and her blood pressure had
dropped very fast. They called in Dr. Paz and he checked her over and
we continued with the meds. She started shaking a bit more so I got a
heated blanket for her. I wanted one too!! It was so warm! :)

The blanket made her feel better. About 30 mins later they checked her
vitals again. Blood pressure was going up fast, temperature was going
up, and heart rate jumped up. So we had vital checks every 30 mins
after that.

Overall she did relatively well today. She had minor stomach upset and
diarrhea but not too bad. She and I slept on the couch. She seems to be
more comfortable there.

Dr. Cooper and Miss Dawn

Haven wanted me to post a picture of her with her card from Dr. Cooper and Miss Dawn. They are her pediatrician and nurse at Johns Hopkins Riverside office. She was so excited when she received them she had to take a picture.

Thank you again! :)

Grandma and Grandpa Virginia's!

We traveled to Grandma and Grandpa's house in Virginia (near Roanoke) for my birthday weekend. On Saturday, Kris and I went out in search of nearby cities. We hit Roanoke first and spent a LONG time there. We got in to Roanoke around 10:30 am and didn't leave until around 4pm. I think we hit every store and I know Kris spent at least 1 1/2 hours at a bookstore. I stayed at the Fairy store down the street most of the time. He even found and bought some Moonshine Jam (yes it's made with alcohol). It hasn't been opened yet. Very cool area - not a place I could live tho.

We drove up the 311 (after getting lost in the housing area of Roanoke). Checked out a few places and pretty much just drove through the mountains. I was so car sick by the time we got back to the 460. This is a house off the 42 between New Castle and Newport. Honestly, I don't know how people live back here. No neighbors for at minimum 1/2 mile and definitely no Walmart close by! We didn't see a shop at all between New Castle and Newport and it took us 3 hours of fast driving to go between the two cities.

This was the cemetery between the two cities. Cool and creepy - considering nothing else was around it and the building in the back was a barn.

I received a text around 6pm that I wasn't allowed back at the house until 7pm! So, hhhhmmm. I found Starbucks. Sat down and got over my car sickness from the twisting mountain drive and had a nice frap! Came home to my beautiful girl in a new outfit Gma bought her and a decorated house. Haven made me a cake for my birthday and decorated my birthday bag. :) I was so happy to see her.

These two pictures are of what Haven and Grandma did all day (other than bake). They had a tea part with all of Haven's babies. Looks like they had a great time together. Poor Grandpa was sent on missions at the stores so at least he didn't have to endure too much girliness! :)


This was a great ending to a great day. I got a bunch of Starbucks gift cards and a bunch of Mochas for my drive home (which I drank the whole way since I drove the whole way back). The tub was ready for me. Candles, honeymilk bubbles, special soap and towel ready. Oh, best part, the tub has jet bubbles everywhere! I went to sleep very soon after.

Thank you Mom and Simon for a great relaxing weekend before the storm. I enjoyed myself. See you on April 20th!

The Pet

We had a groundhog in our back yard and Haven really wanted to keep it. So we caged it up and let her take a photo with it. This is right before we started her chemo....I'm a bit behind in posts!

April 4th Doctor Update

Haven always does her own port cleanings. Needed the nurses help this time. It was a little hard to push in.

She even draws her own blood....I have a hard time even watching.

Well we are driving into Roanoke right now. I set blogger up to post
from my phone. No, I'm not driving and emailing, although that wouldn't
surprise some of you. We had a big day today and it was long.

Haven will start chemo next Tuesday at 9am. We have 4 days of
medication next week at 9am every morning. Rituxin on Tues, IVIG on Wed
and Thurs, and Cytoxin on Friday. Each will take about 5 hours to
administer. On top of that we have 3 new medications to take at home.
Prednisone 2x day, Zantac 2x day, and Bactrim 2x a day on Fridays,
Saturdays, and Sundays only. Then her normal Amlodipine 2x day.

After the first week, she will have her Rituxin and IVIG treatments
every week on Tuesday and Wednesday for the next year. On every 4th
week we will add the actual Cytoxin on Thursdays.

We are exhausted and I've had a migraine since leaving the hospital.
Every time I go I get one, so next week I'll probably be one big
migraine.

I added a couple pictures of her taking her blood from her port today.
She's so good at that.

I will write more soon as to what we have to do to prepare her, us, our
house and anyone visiting her.

But this weekend we're going to try to have fun.

Love to all
Misty

Small update

Just spoke with Haven’s head Oncology doctor – Dr. Paz. Friday we will be moving forward with the treatments and getting the schedule. This is going to be a big meeting. I will put the update on her blog as soon as I can on Friday. If I get a schedule I will also add it to the blog.

I have added a calendar to the side bar which will show any upcoming appointments.

Love ya
M