So I got a letter from JH today and wasn't expecting it. Haven's next MRI is June 3rd - next Tuesday. We are tracking the growth of the tumor that has come back. Luckily this one is at 8am (I guess that's lucky - have to wake up super early) because she can't eat before anesthesia so an earlier time slot is definitely better than the late ones. We should get info from the doctors on Wednesday when she goes in for chemo. Then we have a Thursday chemo as well.
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.
M
Thursday, May 29, 2008
Monday, May 26, 2008
Relaxing day
Everything usually stays pretty stressful around here and very crazy. There is rarely a time when we actually sit and enjoy the day. Yesterday I slept most of it away on the deck while Haven colored. This morning she woke me up at 6am with "Mom, there's a spider on the wall".....well I definitely can't sleep now. So I get out of bed quick because who can really sleep knowing there is a black spider walking around above them.
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
love ya
M
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
love ya
M
Happy weekend
It's such a nice weekend....today is beautiful. I have Haven outside doing her coloring and hanging out with me. Dad is sleeping in today...we usually take turns on the weekend.
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
M
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
M
Friday, May 23, 2008
CONGRATS!
Well I have been given permission to announce
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.
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.
CONGRATULATIONS MARTHA!!!
Thursday, May 22, 2008
Happy Birthday Tommy
I just want to wish my baby brother happy birthday. He has been in Iraq since December and wife and son (1 year old) are missing him. He returns to the states in May 2009.
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! :)
I MISS YOU! BE SAFE. I LOVE YOU!
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
Memorial Weekend
Well we have had to cancel our plans for this long weekend. Haven has been sick all week with fevers, chills, shakes, blisters on her lips, rashes on her body, and A LOT of back pain. I have had to give her back massages every night until she finally just falls asleep. She has two very large lumps on her back - one at her neck and one below her left shoulder blade. So I massage around them. Tonight she was shaking pretty good and had some chest pains. So we did the Zofran and I rubbed her chest until she fell asleep.
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.
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
Computer Issues
Ok…my computer is being plagued with a virus. It has not wanted to connect to the internet for the past 3 days. When it does it will only last for about 30 minutes and then the computer crashes. So if you are missing your updates I apologize…but I will probably need a couple days to get EVERYTHING off my computer to completely clean it. I have 5 billion pictures on my computer that I will be backing up to a discs tonight and tomorrow then I will get it wiped out. I could use Kris’ computer but I really don’t like it. The keys don’t feel the same and it doesn’t have Haven stickers all over it like mine!
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!
Love ya
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!
Love ya
Monday, May 19, 2008
Memorial Weekend
We're looking forward to a nice and fun weekend - hopefully not filled with rain like last week and weekend. We'll be taking Haven down to see Grandma and Grandpa in Virginia for the weekend. She is really looking forward to going down there and having a tea party. I'm sure I'll have to pack up the car with a billion stuffed animals that are all dressed up for a tea party!
Just relaxing
Well I've been told it's been a while since I last posted on here. I thought I posted on Saturday - can't remember! I'm trying to keep it updated as much as I can, as well as, send out thank you cards and deal with everything else going on!
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! :)
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
A little play time!
Finally it stopped raining long enough to enjoy the day! This was the first day we actually took Haven out to a store since starting chemo. She didn't want to go...she said she was worried she might get sick. We went to Michael's because she needed some new arts and crafts stuff. She had a great time - there weren't a lot of people and she got to walk around the aisles looking at stuff. We hung out in the kids crafts section for a long time. We got some colorwonder books and some foam flowers to color.
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.
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
Thank you!
We really want to thank the Elohistic Ministries of Aberdeen for their help. They sent us a WalMart card and a beautiful card to Haven. A few weeks ago Aunt Dottie contacted the Mayor of Aberdeen and told him of our situation and all about Miss Haven. The mayor’s office reached out and contacted some of the churches and businesses in Aberdeen. We are happy to be part of the community.
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