Thursday, May 29, 2008
Next week will be a busy week at JH so if we're not around much you know where we are. Kris will take the Wednesday shift and I will take the Thursday shift. She shouldn't get sick until the weekend which is nice because I'm home to help.
I hope Haven handles all of it well. She surprises many of the doctors and nurses with how strong she is and how well she does. I also realized tonight I need to refill all of her medications again. It's just crazy how much medication at home she has to take. We're all so robotic about it - Haven even knows when she's supposed to have it. I've shown her on the clock what the numbers are when she gets it so she reminds us.
Haven has received a lot of great cards and gifts from everyone.
Skye from St. George, UT sent Haven a huge package of Little Mermaid stuff. There was a drinking mug (which she just loves), a mermaid barbie, nails with mermaids on them, a mermaid bowl and a bunch of other stuff.
Grandma Virginia and Grandpa Virginia are sending a $100 grocery card each month to help out. That is so extremely helpful. Healthy food is ridiculously expensive. I can't imagine why Americans are overweight - in order to be able to feed a family you have to buy cheap fattier stuff. Thank you!!!!
Her pediatricians office is constantly sending her stuff. She said she can't wait to go back to see them.
Julie and Joe Whitehair sent Haven a fairy coloring book (ColorWonder - absolutely love it! thank you) and a Target gift card. We really appreciate it!
Clinton School in Michigan sent Haven their class picture and all of them made beautiful cards for her. She's so excited when she gets cards and pictures.
Again thank you everyone - you don't know how happy she is to get anything in the mail.
I will update more through next week while we are in and out of the hospital. Love to all.
Monday, May 26, 2008
About every morning Kris or I will do a scan of Haven to see if there is anything that may have changed with her. Her back still has the two large lumps and the blister on her chest is still there. The ones on her buns are going away. YEAH! I'm so excited.
We got a new light for Haven....I plugged it in today....BAM! It blew up in my hand. My hand turned black and the biggest flame shot out of it. The cord was dangling in my hand no longer attached to the light. SCARED ME TO DEATH. I had to keep checking my hand to make sure it was all good.
While I was out Saturday I bought Haven a cute little Schnauzer. She has been saying that she wants 5. Well I started off with a stuffed animal of one. It's a Webkinz pet and you have to give him a name on the web site and build his room and buy him stuff and make his outside play area. I registered Belvin (her dog's name) and got her set up. She was so quick to learn how to do it. I showed her once and let her watch the demo. She was on her own. Here is a pic of her playing on the computer
Haven loves to do her workbooks. We were watching her do the letters. She is getting so good at them. This workbook requires her to sound out the picture and draw a line to the letter it starts with. It also helps her counting and saying the ABCs.
If you are ever around Haven you will hear her talk about Piggy or Mommy Piggy. My dad left his shed opened and we watched as Piggy snuck around the shed, stopping every couple of slow stretched steps, looking for peanuts. Usually my dad is close by so she knows she has to be sneaky.
Well my dad wasn't home and Piggy found her way in to the shed. We decided it was cuter to see Piggy sneaking peanuts than to kick her out of the shed.
Now if you remember the beginning of April - Haven and I planted flowers in the front yard. Well here they are! I'm so excited about how they have grown. I go out every day and talk to them.
This would be the back yard by the shed. I started this because I had extra seeds and didn't want them to go to waste. But gardening is probably one of the best stress relievers I can think of. It is so relaxing and gives me my few hours to be in my own head and not think of everything else in life. Now I'm enjoying the rewards!
This one is the other side of the shed. Check out what 3 weeks of rain can do for your flowers!
This is my dad's back yard - I know my Aunt and Grandma will want to see what we have done. I have worked hard on this with them. I planted a bunch of new flowers and my dad planted rocks. I believe we have done a great job on this back yard. I don't have money to do mine so I have my dad buy stuff and I work on his.
The rock garden in the back is the newest section. Just put in. Next weekend I will be planting flowers in the big rock ring in the center!
Anyway, this is how I'm trying to relax and not think about chemo and blisters and hair falling out and swelling! Haven is so swollen right now it's ridiculous.
Talk to everyone soon
Haven's blisters on her buns are starting to go away - we've been putting medicine on them for about a week now. Her chest still has blisters on it. Those just won't go away for some reason.
Some of my friends made Haven some food....we didn't realize there were nuts in it until it's too late. She and dad had to take Benadryl immediately - just in case. She didn't have much and was ok. The doctor told me before that he believes it's the Hazelnut that she can't have. So I might start testing her with regular peanut butter but only a little. Kris accidentally ate mine one night instead of his and woke up with hives and scratching like crazy.
Haven got some goodies this weekend.
Thank you Grandma and Candy for the clothes and chapstick. She has a purse for all of her make-up and she loves the chapstick. Of course, the clothes get put on immediately.
Mike and Tracy sent Haven a bunch of stuff too - all I know was the painting flower necklace, Scott's drawings (so cute) and some more chapstick. Haven tore through the package before I got to see it.
A lady from the local church stopped by yesterday but I was asleep on the deck out back and didn't meet her. Kris talked to her though. She said the Mayor had called her and told her about Haven. She brought diapers and cleaning supplies.
My Haven has had a rough time this past 2 weeks. She's very needy and constantly wants to be held and if she's not in that mood she's very mean and yells at everyone constantly. I know it's the medication but it's hard.
I hope everyone is having a great holiday.
Love to all
Friday, May 23, 2008
Aunt Martha is expecting in December!!!!
Aunt Martha won a huge battle with breast cancer 1 ½ years ago – she found out she had cancer right around the time this picture was taken. This is her with Haven. They were living in Alaska at the time and down for vacation. She’s been talking to me about the medication Haven is on and some of it is the same medication she was on. Haven hasn’t been able to see them since December 2006. They are moving to Provo, Utah so when we visit Grandpa and Grandpa in Utah we’ll be sure to get to see the entire family.
Thursday, May 22, 2008
Sometimes he's able to get on the Internet and checks in on Haven. -- Hey Tommy, I'll have some cake for you and me! Actually Dad and Omma went out to dinner for your birthday - hope you enjoyed it! :)
Wednesday, May 21, 2008
I was so happy to finally get Haven to sleep....I massage her chest and back for about an hour and she finally passed out on me. I almost fell asleep on her. It relaxes me so much when she finally calms down and relaxes. I love my little girl.
Tuesday, May 20, 2008
Haven is receiving the mail from everyone. Her aunt Katie and cousin Stryder sent her the cutest book purse. It’s actually a tote bag but it’s a book. I’ll get pictures and put it up to show everyone. It’s very cute. Thank you!
She got some new pens and drawing stuff from Grandma and Grandpa in Utah.
She has had a bit of a rough week on and off. She is sleeping a lot during the day and not sleeping so well at night. I had to fight to stay awake past 7pm last night. I don’t drink much coffee anymore so I’m exhausted by 9pm. The girls at work have been making dinners for Haven which helps so much. She got a huge batch of steamed broccoli and rice and she told me she even had some for breakfast this morning.
OK….I will talk to everyone soon!
Monday, May 19, 2008
Sunday I spent the morning at Urgent Care with Kris. He had a severe allergic reaction to: The Weather! It's been ridiculous in Maryland for the past week and this being his first spring I think it hit him pretty hard. He ended up getting a shot of something that made him super tired and even more sick and is now on medication. He seems to be doing better today.
Haven had a rough day on Sunday. She had to spend most of the day with Grandma and Grandpa B Honey since we were at Urgent Care. Then I came home and cleaned the house like crazy, even scrubbed the bathroom down top to bottom.
I have a few pics to share of Haven. She receives a lot of cards and a lot of gifts from family.
This is Yurtle The Turtle. Aunt Candy sent Mr. Yurtle along with an Ohio ball (Buckeye). Yurtle colors with Haven every day!
This is Haven's Shining Star bear from Miss Dawn and Peggy at Dr. Cooper's office. We got on line and named Haven's star in the sky. It's in the Andromeda constellation. She has a beautiful certificate with the exact star location.
More beautiful hats. They were sent to Haven by Aunt Dottie. All are personalized with Haven's name and one of them has a bike on it! So cute.
Thank you everyone! :)
Saturday, May 17, 2008
Then we came home and we did crafts all day long. The sun was out and it was beautiful. Kris and Haven designed bike stuff (yes we practice child labor!) ha ha. She did do some great designs - not sure if they'll work or not! I fell asleep in the chair in the sun.
Then Haven helped Grandma B Honey make us dinner tonight. We had wonderful Bul Go Gi. Haven helped with the bean sprouts and made sure the cucumbers were ready. She loves to help in the kitchen. She said the other night when she grows up she wants her own bakery.
Haven also has a new pet (sort of). He's called Baby Fuzz Ball - he's a baby bunny that lives under our shed now. She feeds him carrots every day.
Haven was so excited about her bunny she was almost crying. She loves this bunny like crazy.
Here she is watching her bunny eat the carrot. We broke the no-sodium diet today and let her have a fish taco but it's been 6 weeks of no salt and we thought one day every so often won't hurt. You can definitely tell a difference after just one salty made fish taco. There is a major lump forming in the back of her neck now. Which is worrying us because I'm afraid her spine is going to grow crooked. The doctors said this would happen from all the medication and we just have to watch it. I'm trying to keep her back straight when she's coloring and doing her stuff now.
Thursday, May 15, 2008
Tuesday, May 13, 2008
We are very excited about her vitals today. She has lost another pound and we are down to 57!!!! Her blood pressure remains the same as it normally is at 110/67. Last week I missed her morning dose because I was waiting on the refill. Just one missed dose and we were back to 125/75. I’m so excited she’s losing weight while on steroids. My biggest fear of her gaining 20lbs and going on insulin is not going to happen!
She was funny last night in her sleep. Usually she is screaming and sitting up yelling. Last night around 4am she was singing in her sleep. What was she singing about – Grandpa B Honey and having gummy bears with him. She sings about the funniest stuff. Even when she asks for something she sings about it. I have NEVER heard her sing before all of this. She still has never cried with real tears or ever been hurt – which is kinda strange for a 4 year old. She tears up now when she gets excited so we know some emotions are starting to develop. I still get kinda weird when I think that she’s never cried. Even when she was a baby she rarely made a cry.
Anyway, there is some good news for the day. Rituximab is finished after today – we move on to her other chemo treatments. She has completed 6 doses of this and just when I got used to the side effects of this. I know today she will run a fever and be exhausted and sick. By 6pm she will be cold and a bit shakey and want to have someone near her at all times. The next round of chemo treatments I will have to relearn side effects.
Monday, May 12, 2008
She contacted Heavenly Hats for Haven and in her package came the beautiful purple bear and a big white bear.
Haven is doing well. We have a couple blisters still and one on her chest - she seems to be allergic to the tape they use to keep the needle in her port on multi day wearing. We're trying to get that healed up but with chemo things seem to take a lot longer than normal.
She (we) had a rough night last night. Not because of chemo or anything but because of the CRAZY storms in Maryland. It has rained every day since last Thursday and last night was the worst. Around 11:30 pm I thought we were having a tornado. We heard a huge crash outside and Haven woke up a bit freaked out (never really went back to sleep). I believe the winds had to be about 60 mph and the rain and thunder was ridiculous. The crash outside was the patio furniture being thrown against the bedroom wall where Haven was sleeping. This happened for a long time. I was ready to head down to the basement just in case.
I found this on the internet about the storms:
Wind gusts reached 50 mph in many parts of the state, and hurricane-strength gusts of 76 mph.
The foul weather also prevented the Coast Guard from resuming a search for a female passenger who fell overboard from a cruise ship northeast of Atlantic City, N.J., on Sunday night. The Norwegian Dawn was headed for Bermuda from New York City when the passenger fell.
Utilities reported more than 60,000 customers without power in New Jersey, 50,000 in Maryland, more than 23,000 in Delaware, 16,000 in Virginia and 4,500 in the District of Columbia. Power already had been restored to many of those customers by early afternoon.
I believe Kris was out in the rain until 3am putting bungie cords on the shed doors and zip tying everything to the deck. Stuff was blowing out in to the yard and it was everywhere. Haven slept with me and we kept her bears safe - they were scared.
When Haven and I got up around 5am everything that was on the deck was tied down. I even found stuff in the street when I left for work. So is this Spring in Maryland!?!
Saturday, May 10, 2008
She also received a package from The Heavenly Hats Foundation. We're not sure who contacted them but we thank you so much. Haven was so excited. She's sleeping with her new dark purple bear tonight.
Friday, May 9, 2008
Grandma Virginia bought her some lip gloss while she was out here and Haven had almost used all of it keeping her lips moist. The doctors said we have to keep her from picking it or the blisters will get worse. They said to keep chapstick on them at all times.
Then she told me she was very itchy and her hair was itchy. Last time she said that we lost quite a bit of hair in the car. So I told her a nice warm shower would make her feel great. So we got in the shower and I was washing her hair and clumps of hair was coming out in my hands. UUUGGGG....This is so hard. I didn't let her see any of it.
I got her out of the shower and convinced her that it's so hot outside and that we should cut her hair to make her feel better. I probably cut off another 4 or 5 inches. When she turned around and saw all of it on the floor she looked at me with the saddest face and started to tear up. Causing me to start crying. She just held on to me so tight. She didn't want dad to see her hair. I kept telling her how beautiful she is and how her Grandma's are going to like it. That Grandma Virginia would probably think it looks like her hair. That made her happy. She asked if her nurses would like it. I told her they are absolutely going to love it.
She kept holding on to me making me cry worse. She was hiding her face in my shoulder and didn't want dad to see her. I finally convinced her to get on the couch and let me take a picture for her family to see. Then I told her we'd have something creamy and spoony (this means jello with whip cream). She was happier after that.
We ate our jello snuggled up together and then we took ALL of the meds. She went to sleep feeling much better and watching Alladin.
I don't know what to do over the next couple of weeks as it keeps falling out and her side effects get worse. I just love that baby girl. I hate that she's going through all this pain. I wish I could take it for her.
Thursday, May 8, 2008
We started drinking our water and tea around 6am. Haven can down a 12oz bottle of water like a shot. She loves these days because we don't say no or stop. We got to the hospital and they checked her hydration - again she is well over hydrated and we can start immediately.
The clowns came to visit today. Last time she was too scared and pretty drugged up to want them around. Today she talked to them a little - she was working on a card for Dr. Cooper when they came in so she wasn't a big fan of having to stop. But we did get a picture.
Nothing crazy with the Cytoxin today. When we got home from the hospital she had a pretty good fever going. Her hair was soaked and she was so red all over. Got her on the couch and let her sleep it off. Around 8pm she started to wake up out of it. In time for meds and getting ready for bed.
We have the Zofran ready. She takes it every 6 hours for the next 24 hours because the Cytoxin makes you very sick. Then after 24 hours we can ease up unless she feels like she's going to be sick. It helps her a lot. This is actually one of my favorite meds with all the chemo she gets.
Honestly, I know that tomorrow she will be ok (or I feel she will) it's the weekend that has me concerned. The side effects of Cytoxin take up to 36 hours to kick in. So this weekend we will stay at home and take it easy. We'll do a slow Mother's Day.
Haven's cousin Baby Stryder and Aunt Katie are coming in to visit for the weekend. I'm sure that will be about as much excitement as she can handle.
In evening Haven was super tired and just worn out. She came outside for a little bit and just kinda sat slumped in the chair. I was able to force a couple pictures out of her to show off her new stuff. She got a new Haven Pink shirt from Grandma Sing and Grandpa BeardOff. Then her Uncle Kevin and his girlfriend Annie sent her an Ocean Princess shirt and matching card. Below are her pictures. She was in and out of sleep. I slept in her bed all night with her. She kept her hand on my face the whole night - making sure I didn't move.
Tuesday, May 6, 2008
She did well today. She even did her port without the numbing lotion. The nurse said she wants to video tape Haven so they can show it to the other kids so they can see how it's ok to have your port accessed.
She will keep it accessed all week so they don't have to keep poking the needle in. She's lost another pound - so we are down to 58 now. The doctors can't believe she is losing weight. Most children on steroids gain about 20 lbs (says doctor) but Kris is extremely strict on watching everything she eats and everything he and I buy. We do have to get her up to walk more. Her medicine drains her of energy and she refuses to walk.
Kris met with all 3 of her doctors today. I got the updates via text.
They are not worried about the 2 days of sickness last week as long as it's not a constant everyday thing. The spot on her back is still there but it is the same size. They are still not concerned about it. He spoke with Dr. Paz about her tumor and pretty much got what I got last week. We were told it was completely removed and nothing showed on the MRI right after surgery but it's slow growing. As long as it doesn't start growing fast we're going to leave it alone while we're doing the chemo over the next year. We still have a very hot foot and a very cold foot and lots of attitude.
She's doing fine tonight (well she's talking a lot in her sleep but that's normal). She was very exhausted when I got home at 6pm. She went to bed around 8pm. The doctors are amazed with Haven. She's fighting this pretty strong and considering how much medication they put in her they are surprised that she's not sicker.
We still have the eye issue. I spoke to the doctors last week. They will not move forward with fixing that until the chemo is over. Most likely they will do surgery on the eye and tighten the muscles (so says the doctor). She still has 20/20 in both eyes which again they were amazed with.
Tomorrow she will be out the door by 7am and in chemo by 9am.
Saturday, May 3, 2008
Tonight my parents took us to dinner in Glen Burnie so I had time to hang out with her in the back seat of the car. She kept complaining that her head was itching and she kept scratching it - driving me crazy. So I told her I would rub it and for her not to dig at it. I rubbed her hair for about 30 seconds or so before I moved my hand away. Only to have a handful of hair. It freaked me out so bad I quickly hid my hand so she couldn't see it.
I rubbed her head again and had another handful of hair. Now I'm just upset. I can't believe this. I show Kris my hand and of course he's upset about it. I feel so bad for her. I rubbed her head until she fell asleep. I was covered in hair by the time we reached the restaurant. I pulled it back in to a clip for her.
We got home and she brought one of the hats that Grandma Virginia gave to her to me. She wants to start wearing them because when she's in the sun it really hurts her hair. In the next week she will be slowly getting haircuts so she doesn't notice it too much at first.
My little baby.
Then last night I was about to go to sleep - Haven woke up to tell me there were sores in her mouth. Which I thought she had bit her cheek or something. I asked Kris if he knew what she was talking about. He mentioned a few days ago the case worker called and was talking to him about Haven and her chemo. She asked him if Haven had any mouth sores yet...he was surprised and immediately told her no. No one mentioned anything like that to us - no listing of that in the symptoms paperwork. But she has mouth sores...little white dots in her mouth.
Then later in the day she was doing something weird with her mouth and Kris asked her if something was wrong. She kept complaining that her teeth felt "soft". Well I don't know what that really means but I felt all through her mouth for loose teeth. The doctors always want to know if there are any loose teeth. Everything felt fine so I brushed her teeth for her. Seemed to help a little.
It's just crazy how everything is ok and then it all hits at once.
I just wanted to share a couple of pictures of Haven's Wall. The stair railing has turned in to a wall of cards from everyone around the world. She is so excited to have this wall and every day that she gets cards she has them saved for me to hang on the wall - envelopes in a separate pile so I have the addresses.
Today she received a big package from Dr. Coopers office with a summer bag and beautiful books. She was so excited that Dr. Cooper sent her stuff.
The Stilwell's in Minnesota sent Haven some pictures of their mountain bikes with "Haven" stickers on them. The note on the back said: Hi Haven, We put stickers of your name on our bikes to make us ride faster! So sweet. They also sent Haven a cute gift card to WalMart. Thank you Zach and Steve and the Stilwell Family!
She also received a card from Alyssa Cooper (Alene's 2 year old grandaughter!) in Phoenix, AZ. So sweet. We now have a beautiful picture of Alyssa on her wall of
As you can see I am saving every card and will be putting them in to a scrap book album for Haven to read some day when this is all over. Thank you all so much. We really appreciate it and we love you all.
Thursday, May 1, 2008
As of right now we will not be doing anything with the tumor. Her immune system will be completely shut down as of May 8th and we do not feel it’s worth the risk of an infection due to more surgery.
We will be watching the tumor through MRIs taken every couple months. Her tumor has a history of being slow growing and right now it is pretty stable. We will be taking it one day at a time.
I will keep everyone updated as to any information regarding this.
Last week she was feeling like the flu for about 24 hours. Just really
This Tuesday she started to feel achy and hurting around 6pm. She
didn't want to talk to anyone and just hung out on the couch. Wednesday
she was worse. By the time I got home she was in hell. I came home to
her screaming in pain in the bathroom, Grandma Virginia in there with
her and her dad at the top of the stairs with a thermometer. Buckets
laying around the house. I went into the bathroom and her hair was
soaked in sweat and she was crying that it hurt. Her stomach was
cramping so bad. We got her cleaned up and on the couch with a heating
Luckily I went to bed early, at 3:30 am she woke me up to come sleep in
her bed. I didn't even ask her why and jumped in there. She had the
heating pad on her stomach and she was curled into a ball. I massaged
her stomach and back for a long time. Around 4:30 am she started
screaming the she needed to go to the potty. We all got up and took off
in there. The scream of pain just goes thru your body and you can't do
anything but watch her. I was hugging her while she was on the potty
and then she started throwing up. I grabbed the trashcan in time and
filled that up. Kris came in and took off to Walmart to get medicine
and suppositories to help her out. I got another bucket from Grandma
and she just kept throwing up. Grandma made her some tea to calm her
down. Dad got home and we gave her the Zofran and helped her with the
After about 40 mins in the bathroom we were able to venture out to the
couch. She is being extra slow today and Grandma is taking good care of
her. Dad is out picking up prescription refills.
My question to everyone after all this was "Did I shower yesterday?"
Which in turn lightened up the mood a bit.
So before sunrise the entire house was running like a bunch of crazy
chickens. Haven is doing better and is working on her pictures and
Until next week. We have 3 days in a row next week of medicine so
Mother's Day plans are on hold as she is sure to be sick thru the