Thursday, July 31, 2008

Doctor Week

Haven was completely sick all week. The chemo last week just hit her hard. We've never experienced this. She had fevers and vomiting and diarhea all week. She is doing better now - it's Monday. I was gone all weekend so she hung out with Daddy and The B Honeys all weekend. I think they had her from 10am until 9pm on Saturday. She wouldn't go home!

I also heard we had a tornado warning on Saturday and announcements and sirens going off every where. Then Kris called to tell me he left the dining room door open and heard something. Came to check it out and there was a raccoon in the house!

I will update medical shortly. But she is feeling much better now.

Haven with a new friend in the playroom during chemo. This cute little girl had gloves on her toes! I was surprised Haven actually ventured out to the toy room.


Haven walking her own cart around the Oncology clinic. First time she's ever done this.


Flushing out the port. We had a new nurse.


At the end Haven went around to the nurses and doctors and gave them sun catchers that she had made. She loves to give stuff to people.

Wednesday, July 30, 2008

Chemo week

Well its been an up and down week so far and its only been 2 1/2 days.

Monday Kris took Haven to her MRIs. It was his first MRI without me and
I've taken Haven to the last 3 visits. He was able to remember
everything and the doctor called me. The doctor kept asking about
putting a tube in her throat and having her stay overnight. But I kept
telling him she doesn't have issues and is recovered within 30 mins.
Also she can't have Ketamine. Seems like the doctor was having a bad
day. He put a tube in her and refused to let her leave. Kris got to
her and she had blood on her mouth. Well it wasn't pretty after that
and Dr. Badget was called, finally Kris and Haven were on their way
home.

We had a talk with Badget afterwards and made it noted we will never do
an MRI if this guy is scheduled. One of the girls told Kris that
anesthesiologists don't really like parents of oncology patients. They
are at the hospital too much, know too much, and are very particular in
how an MRI is done. Kris and I completely fall here...we agree we know
too much and to be honest, wish we didn't know as much as we do.

Tuesday was IVIG. They had a new IVIG and hooked Haven up. It took
half the time as usual and had to be protected from light while being
administered. Haven was fine until about 5 mins before she and Kris got
home. Then she was sick. Very sick all night. Fever at 99.9, nausea,
headache, super achy, dizzy. We couldn't have the TV or lights on
because she'd throw up. She slept with her dad last night. She said
that would make her feel better.

Today we had Cytoxin. The appointment is set every couple of weeks at
9am...never changes but I sat until almost 1pm waiting for the Cytoxin
to be made/cooked. No one put the order in for us because the person
that normally does it was on vacation!! So Haven had 3 1/2 of saline
solution pumped into her!! We have been in the potty 5 million times.
We are still at the hospital and should be out by 4pm. Hopefully
tonight will be less eventful.

I have some medical updates from MRI and other items that I will update
tonight.

Love to all
M

Friday, July 25, 2008

End of July is busy


Well I haven't felt well all week and finally had my first day this week without a headache. So thought I'd update.

I spoke with Haven's doctor on Wednesday about the spot on her back. It is not Lipoma but rather - this is funny in a not funny way - something they can't explain! Her muscle is growing out instead of across like normal. The doctors have no explanation and can't even say how it happened. They said it's definitely not what they expected to see.

Monday she has her MRI at 9:30am and they will do the abdomen as normal but will also go all the way to the thorax. This will capture the muscle growth in her back. After they have the results from the MRI - which is usually the same day for a cancer patient - they will review it with Dr. Price. If you remember, Dr. Price was Haven's surgeon. From there they will review the MRI and decide the best course of action.

Kris will be taking Haven in for Chemo on Tuesday so he will be meeting with Dr. Badget and I have requested to have Dr. Price come look at her but we're not sure on his OR schedule. Kris will be able to review the MRI and get any questions answered. I also talked to Dr. Badget about Haven's blisters in her mouth and she had a temp of 99.8 -- so close I thought we were headed to the ER again. Remember if she reaches 100 we have to be at a hospital.

Wednesday I will take Haven in for Chemo again.

Thursday and Friday Lauren will be coming to hang out with Haven. She will be busy all week - which makes me pretty happy!


Check out the largest beet ever! There was a Farmers Market at work on Thursday! I found 3 of the largest beets ever! Haven loves them.

Wednesday, July 23, 2008

Crazy week...

Haven had a great day today. Miss Lauren came to visit. She is Haven's new nanny/friend. Kris interviewed her on Monday and she was able to start today. She'll hang out with Haven 2 days a week from 12-5. They played the Wii, worked on her letters, did some numbers and coloring. It was nice to come home early from work and sleep comfortably knowing Haven was having fun.
Here's Haven wearing one of her new shirts from Aunt Dottie. I'm surprised she wasn't wearing a long sleeve. The house was freezing to me!

Last night was crazy. I went to the doctor after work for my headache that had been killing me for 4 days and getting worse. Needless to say I was in an ambulance to the ER by 6pm and on morphine by midnight. I barely made it through a half day at work. I came home early to sleep and luckily got to meet Lauren on her first day. Today we just relaxed and I am happy to report that the drugs are finally getting out of my system!!! PS: I will never take morphine again...I have never been so sick.

We've been pounded by thunderstorms here. Last night we had a small twister (they say) and this morning there were trees everywhere. One house had a tree through the middle of it. I barely remember last night but I remember trying to light a candle and not doing so well. Tonight we have more crazy storms coming through. Haven was a bit scared to go to the room but we have lights and TV on back there.

Anyway. I'm tired. Love to all! M

Tuesday, July 22, 2008

Quick update

HI

Since I can absolutely guarantee that I will have a most excruciating headache again tonight (for the 3rd night in a row!) I figure I better post early. I've been in bed by 7pm lately and just can't even look at a computer.

Haven is doing pretty well. We're still waiting for results from the scan last Friday. I have put a call in to her doctor and should hear back. They are usually pretty good when I page them. Right now we are dealing with the blisters in the mouth again. We bought some bubble gum flavored Orajel or something like that. Kris picked it out - I can't remember.

Haven's pottying is AWESOME! She pretty much goes to the potty all the time now and by herself. This is HUGE! She really wants to go back to school and we're working hard on it. Lots of homeschooling right now. Kris works with her a lot.

We received a phone call that Shannon was in a huge accident this past weekend and will be out for 6 weeks. Luckily, Kris' dad was already on it and had an interview set up yesterday for Kris and Haven to meet Lauren. At first I think Kris was hesitant when he met Lauren. She's in her early 20's and he was worried she might not be able to handle Haven. But I guess Lauren hung out for about 2 hours yesterday and talked with Kris and played with Haven. Everyone seems to get along and both Kris and Haven really like her. Haven wants her over every day....but we're going to see about 3 days a week if possible. She also owns some goats and invited them to come see the goats - which is just freaking Haven out. I'm hoping to have Lauren start this week. I know Kris' dad is working hard on this - THANK YOU! We're doing background check and reference checks now. I just want Haven happy.

Thank you to my grandma as well. She sent Haven some beautiful clothes and some pop up books. Ooohh, I got a check too! Not sure what I'll buy..maybe a back massager! Grandma sent a weird car part in the box too. Haven, of course, tears through everything before I can see it and she didn't know what it was. We were laughing cuz we thought grandma had finally lost it and was just sending random things laying around the house. But I now know it's for my dad!

Miss Dawn and the gang sent Haven her weekly arts and crafts! Thank you everyone. Guess I'll be seeing you guys this afternoon when I'm in the office. Haven absolutely loves getting the packages from you guys. Maybe I can bring her by there really soon.

OH GRAM/CANDY - guess what - remember the black snake in the tree. Well Dad and Omma were watching Haven on Saturday for us and when I went to get her I heard all about another snake IN THE HOUSE! Yep it was in the house - in the dining room! You sure you don't want to visit? Ha ha! Love ya

Thanks to everyone - Haven received cards and gifts from Shirley Anderson and a couple girls from the school in St. George. She's been working on thank you cards back to you! :)

Friday, July 18, 2008

Phones/Text/Email

Just a little note for those contacting either one of us:

First – Kris’ phone is dead – most of the time. It has about a 45 minute battery life and just in general is a horrible phone. Go SIDEKICK!!! So if you do need him you can call on the house phone (if lucky enough to have that number – I don’t even know it) or you can contact him on my phone AT NIGHT! I have my phone with me all day but we share at night. So if you need to text him or call just use my number.

Second – for those of you who are calling me….I don’t answer weird numbers. I get a lot of weird calls throughout the day from phone numbers I don’t recognize or they are unavailable. I receive about 5 weird calls a day but no voice mail. Please – I won’t answer the phone and if you don’t leave a voice mail I will never call you back. I don’t check voice mail everyday either – maybe about once a week I check voice mail (if not once every 2 weeks).

We don’t want to miss an important phone call but we assume it’s not too important if there is no voice mail.

OR you can text either one of us…email is always open too! We have many ways we can be reached just actual talking on the phone may be the hardest!

Lots of love to all
Ciao
M

Wednesday, July 16, 2008

Couple funny videos





Haven teaching her dad about Breakfast/Lunch = Brunch




Haven reading the cook book to dad

Haven goes shopping...

Miss Haven's friend Shannon came over today. I hear the had a blast hanging out. Haven had so much fun. Haven and Shannon went to McDonald's and got a chocolate milk. Haven's favorite and best calorie and fat wise choco milk I can find. Kris told Shannon they could go through the drive thru but not go in. Then they came back home and asked Kris if they could go to Walmart. He said ok because Haven has pretty much been terrified to leave the house. She worries she'll get sick. He told them they could go for 1 hour - Haven never goes anywhere without one of us. Kris didn't tell me Haven was gone until I was already driving home. He knew I'd freak out and I was at work. But Haven told me all about it when I got home and she was so excited.

The picture above is what she wore today. She and Shannon got jewelery, nail polish, lip sticks, hair bands, and clothes when they were out. So pretty much Haven was spoiled today!

Tomorrow Haven has her appointment at 9:30am to scan her back. I told her everything that was going to happen so she wouldn't worry. Her only concern: how does she take her shirt off if Dad is taking her. So I made a deal that he can leave the room for her to change in to the gown and then he'll come back in.

I have posted a few bits of my issues on here and had some emails. So I will just do the brief version - not a full detailed version that family received last night.

Basically: I have 4 vertebrate that are killing me. Two are in my neck and two are in my lower back. Slight nerve damage in the neck. I could probably explain the lower back with gymnastics but the neck. I can't imagine how my neck got messed up. Anyway, without a lot of details on the neck, I also have costochondritis. Which I've had since college. But this is not helping with the neck issues. When everything acts up at the same time I get dizzy, lightheaded, and everything goes black while also not being able to breathe. We thought I might have just had Vertigo but after we got the MRIs back we now know exactly what's going on.

I got a lot of good meds yesterday. The first time I went in I got some meds for severe pain. All it did was make me very loopy but did nothing for the pain. So I was loopy and hurting. Yesterday, I got Percocet for the pain. It was honestly the first night I've not wanted to chop my head off or jump off a building. I had minimal pain. The night before I was ready to have Kris just punch me and knock me out so I could sleep. I am also on Atenolol. If you look it up it's a pretty crazy drug and extremely strong. High risk of heart attack. So the doctor is starting me off slow at 1 pill a day for a week and then next week I will go up to 2 pills a day. I have a few other meds but those two are the main ones.

Next week I will start physical therapy for my back. I'm not really sure what that entails but if it's anything like a chiropractor I will not want to go after the first visit. I'm hoping it's like in a pool or something. I can't imagine what they will do for my back. But I'm also going to have to learn to prevent the headaches that knock me out. So they will be teaching me some exercises for my neck to keep the blood flow open.

Whew.....the girls of this house are going downhill fast. I can't believe I'm only 33 and live in an 80 year olds body! I believe Kris is still in denial of my achies....which is fine. I'd rather have him focus on Haven...I'm a grown girl - I can take care of me.


This is a picture of Miss Shannon and Haven playing a couple weeks ago. I happened to come home early and was able to meet Shannon. Haven had told her I go to work so I don't have to meet her. So I wanted to show Haven that I would meet her. They had so much fun today - I'm so happy!

Sunday, July 13, 2008

Busy week

Well we've had a pretty busy week. I figured now that I've taken on 3 jobs I'll probably do a weekly update on Sunday unless something crazy happens during the week with doctors or something.

We do have the scan of Haven's back next week. I have to change it from Wednesday to another day. Kris is taking a class that is on Wednesday. I'll update once I change that date.

I've been hanging out with Haven a lot this week during the evenings. It's been a lot of fun. Dad has been playing with her all day every day.

Last post I mentioned we were going to start the potty stuff. IT HAS WORKED! She pottys by herself about 90% of the time. She picks a gummy worm or bear....now has Pez as a choice thanks to Miss Dawn. It's awesome what a little motivation can do. She really wants to go to school next year and is trying hard to get there. Yeah Haven!!!

I have some pictures.

Yes...we had a beautiful black snake in the back yard. It was maybe 5 feet long and pretty round. This is my dad's tree that overhangs to my yard! I called my mom to tell her to NOT go around the back to get in the house...to go to the front door. She went to Kris to let her in the house. My grandma would love this guy!


This is called a "Peanut Butter Buddy". Haven created it for dinner. It's a sandwich that is 1st sprayed with butter, PB&J is then added, next is a layer of low sodium crackers, then the sandwich is grilled. She and dad have been eating these.


These are some gifts from the Nurses at Haven's Pediatric office. Miss Dawn gathered up the group and sent haven some Pez (perfect for potty time), a cute leopard (now named Brown and White - perfect), and some painting stuff. She painted all day Saturday. Check out her face above. You may not notice but I do. I can finally see her nose. There have been days that she hasn't had a nose at all - because of the steroids. She's slowly starting to get back to her.



This little guy marks Groundhog #5!!! Yes we've had 5 groundhogs. Haven says they come because they love her AND they have a couch, TV, and remote under the shed. GREAT!

Saturday was rough...I think we went to lunch and that's about it. I was outside mowing all 4 lawns and came in to get a drink and found this! These two were playing Mah Jong....next thing I know they are passed out.


A few videos of the week:

video
I really tried to play Mah Jong. Actually, Haven said I could and that she would just show me how to do it. After about 2 minutes she realized I was playing and that's when it all started!


video
This was taken around 1am last Thursday evening. My meds don't let me sleep - they wire me so bad that I've been up until 2:30 am during the week and back up at 6am to go to work! Haven wanted to sleep on the couch while I watched TV. She started talking a lot so I grabbed the camera. This was a conversation she was having with Gpa B Honey. She's talking about something downstairs that he wants but she is telling him he can stay upstairs if he doesn't want to go downstairs.

video

We have been working hard the last couple weeks with Haven on her letters. She was tracing them in the workbooks at first, then we moved on to the dots of the letters, now she can write them on her own. She just needs to look at a picture of one and then she does it. AWESOME! She will be ready for Kindergarten. Kris wants to start homeschooling her now. So I've been checking out more and more workbooks. She is on Kindergarten and first grade books right now. We've even started on Phonics.

Wednesday, July 9, 2008

Not sure on a title!!!

I’m so tired I don’t even know how to start writing. But, I have confirmed Haven’s next few appointments – I’m still waiting on some more of them.

Scan of her back below the shoulder blade will be July 16th. They are testing for possible Lipoma.

MRI will be July 28th the check the tumor and make sure it has not grown.

Next chemo days will be July 29 and 30.

Haven and I had a lot of fun last night. She has a new Mah Jong game that she has been playing like crazy. She won’t even let me suggest tiles. It’s an online game we found. Well yesterday she beat the game 3 times – by herself. I was amazed. So I hung out with her for about 2 ½ hours playing this game. She showed me how to play and what you need to do to get the matches. It was a lot of fun. Our plan is to play again tonight until she passes out in my arms again!
Her friend Shannon was supposed to come by today. Then I got a call at 10:30 that made me very sad. Haven has been asking for Shannon since last Sunday. She got up this morning and put on her new dress I bought her last weekend and was ready for Shannon. But then Shannon called and said she couldn’t make it. Haven was very upset. About 11am she called me asking if I could come home to be with her. I told her I would as soon as I finished work. Kris decided he’d take today off from working and play with her then he’ll go to work tonight when I get home. I think we’re going to have to ask for another person. Shannon has cancelled 2 visits out of 4 total. I really get upset when someone promises my daughter something and cancels a ½ hour before. You should see Haven’s face. But I get to go home in about an hour and I looking forward to playing some games.

We did some funny videos too. I took some last night of her sleeping. It was awesome. I’ll get those up tonight.

Love to all
m

Monday, July 7, 2008

Haven speaks

She gets stage fright so bad that her dad had to go outside to do this video.

video

She got some pretty cool prezes from Grandma and Grandpa Virginia today. I got a cook book that Kris quickly stole. Haven also got another $100 gift card from the B-ginias (as Haven says it). So Kris is going out shopping and getting her special requested blueberries, strawberries, broccoli, and other foods, as well as, more diapers.


We've also been discussing an "incentive program" for going potty. We have told her there will be no snacks unless she tries to make it to the potty. So if she doesn't go potty she loses the 10am, 3pm, and 7pm snacks. Now I just have to make sure I don't give in! If she does make it she gets her snack and a surprise of gummi bears or worms. Her choice.

Anyway, I'll let you know how that goes.

My plan for this evening is sleep! Haven did NOT sleep last night. She woke me up around 1am walking around. Yes, she had a sleep walking episode and it bothers me. I don't want to start going backwards. So I got her back in bed and while changing her diaper I think she hurt her back. She let out this weird groan and twisted funny. Then she was begging me to rub her back. So I got in her bed and did this for a while. Then she asked if she could sleep with me. WITH me turned in to ON me. I was beaten pretty bad all night and hung on to the bed like a rock climber on a wall. She had a lot of bad dreams and pretty much screamed in my ear all night. So right now I'm running on max of 2 hours of sleep.

Good night! :)

Saturday, July 5, 2008

My Baby Girl

She is definitely changing. She danced for the first time in her life yesterday. It was so funny. She was playing on the laptop and accidentally turned on my iTunes. I went to turn it off and she was dancing. I couldn't stop laughing...I had to dance with her. She has NEVER danced before.


This morning - before I passed back out - she really wanted to ride her bike. I was amazed that she would request it. So of course, we got it out as quick as we could before she could change her mind. I have a short video!


video

She got a huge package from the kids at Fossil Ridge school with some crafts and toys. Miss Dawn and gang sent her a doll and some baby clothes.

I took her to the bookstore this weekend and we picked out 4 new Pre-K workbooks. I was excited....but obviously they were too easy. She finished all of them within a couple hours and told me she needed harder ones.

Oh, then she started telling me how paintballs are made (she watches the "How It's Made" show). She was laughing and told me they use "food ingredients". I just looked at her. She then told me which ingredients they used. Her vocabulary amazes me.

Butterfly in there

I did a lot of gardening on Friday for my day off. Pulled a million weeds. Haven painted her new piggy bank I bought her.

This is Haven's favorite flower in the garden. So perfectly named "Haven Pink"

Happy 4th

We hope everyone had a great 4th. We kept it low key with Haven just having 2 days of chemo right before. We didn't get to see any fireworks but we heard them. She was up with me until 2am and then back up at 5am. Needless to say, I'm worn out! She spent most of today with her dad. I slept a lot.

Quick update: My liver, thyroid, and kidney test came back good. I have 3 MRI's on Tuesday next week. Of course, I'm almost freaked out enough to not go! But my back was so bad yesterday I couldn't even walk. So I'll get them done.

Haven has a CT scan temporarily scheduled on Wednesday. It was supposed to be Tuesday but since I'll be scanned all day we had to move it.

Thank you Fossil Ridge!!!

video

The kids at Fossil Ridge in St. George, Utah sent Haven an awesome video! We have enjoyed watching this a few times. Haven just laughs and laughs. Thank you everyone for making this and sending it to her!!!!

Tuesday, July 1, 2008

Well I have been working hard to get Haven more active. She just seems depressed and a little lonely since not being able to go to school. So this past weekend Kris and I decided she needed to get out. While out we stopped at a game store and she played a game for about 30 minutes. Just had a ball. So with the money my mom had given to us Kris decided to buy a Wii for her. She played it for 6 hours straight on Saturday. She wore herself out. This is one of the most active days she had. Below is a video of her boxing.

video

Absolutely adorable. I had so much fun watching her play. She's awesome at bowling too. Then Kris found a game on the computer that she has been kickin' butt at. She's been playing Kung Fu Panda Mah Jong. I couldn't figure it out but she has been crazy about it. Kris took his computer to the hospital today so she could get online and play while getting her chemo.

This is a picture of her after playing Wii for about 6 hours. She fell asleep around 10:30 pm holding the controller.

I was also able to finally get her outside to help me water the flowers that she planted. We are now tapering on the steroids and she's slowly starting to get more energy and wanting to do things. So I'm always excited when she wants to come out and help me with the yard. She calls this attire: Buns Out! Which means she has decided it's too hot to wear shorts!


Of course, she loves to build things with her dad. She loves to work on the his bike, but we don't let her around them anymore. So when dad had an ark to build she was right there. It's actually a book shelf but looks like a boat the way he's sitting in it.

She's had a bit of an issue with sleep lately - she just can't fall asleep. Tonight she asked if she could sleep in the bed with me. So of course I let her. Tomorrow she and I will be at JH receiving this week's 2nd dose of chemo. I had plans to go to Ohio this weekend but forgot it was a chemo week, so I have canceled those and we will just hang out and relax.

HUGE THANK YOU

This is a personal thank you from me to the Riverside Johns Hopkins office. I have not been feeling well for over 4 weeks now. And as my family knows I'm too stubborn to go to a doctor to see what's wrong. I think the last time I went to a general doctor was about 10 years ago! :)

I finally called (after being coerced by Emily) last week. I was in a lot of pain last week and so dizzy I couldn't sit at my chair at work. So I called and being a new patient the soonest I could get in to the doctor was July 29th! I started laughing at the nurse. I don't think she thought it was funny. So I told her I've already been sick for over 4 weeks and I can't wait any longer. I gave her the list of my complaints and she said she could get me in to see an intern on July 7th. Well that was still about 11 days away.

I felt so bad or I never would've done this - but I sent a desperate email to Miss Dawn (Haven's nurse) and begged her to help me get in to see a doctor sooner. She called me yesterday and told me that she and Miss Peggy were working on it. Then today around 11:30 am she called and had an appointment for me at 1:30!!!! YEAH - THANK YOU.

Honestly, it was the longest doctor visit I've ever had. I've never had a more thorough check up in my life. The doctor was great and he actually listened to me. Even though I almost started crying telling him! After being checked for 1 1/2 hours I noted that he was sitting there scratching his head thinking.

I asked him - so am I crazy? He looked at me and said: "No, just complicated". HA - as if I haven't been told that before.

Anyway, EVERYONE can stop calling and telling me I'm pregnant. That test was negativo. Next we did a bunch of blood work. I won't say much because I know my aunt will panic and I'll get crazy emails but I did call her immediately after the doctor. He says it's more than just sugar elevations. He's checking my thyroid, liver, kidneys, and diabetes. I also have 3 MRI's scheduled for me. He will be checking the brain, cervical spine, and lumbar spine. He said he's checking other things too but didn't want to get in to those as they are less likely to be the cause. He said if it was just headaches or just my left arm going numb it would be easy. But since everything I'm complaining about links together he will have to work on it.

Plus side - I got meds for my headaches. He said they are more of a narcotic! SUPER...maybe I'll get some good sleep! :) Negative side - I had to get a poke. Miss Dawn was there to do my poke. I had to call Haven and tell her. She was making fun of me cuz I don't have a port. I hate needles and get very nervous about blood being taken. So Miss Peggy joined us and we compared the pain of tattoos and how I could possibly be scared of needles if I have tattoos. IT'S DIFFERENT! :) Then I got to text Kris and tell him it's real and I'm not faking! He says both Haven and I are faking it so we can drive him crazy! :)

Anyway, I love Miss Dawn and Miss Peggy for helping me out and working to get me in. I really appreciate it. See you in two weeks!

More to come tonight - I have a lot of stuff to post on Haven. Love to all - M