Tuesday, October 21, 2008
Haven usually likes to draw her own blood but when Katie brought out to large bottles and about 7 small tubes Haven wasn't very excited. The two bottles kinda freaked her out. Above is one of them. Haven did extremely well as usually, I don't like to stay in the room when she does it but she wouldn't let Katie do it if I wasn't in there.
So the news today - Haven's doing very well on the main counts - white blood cells are a bit high but she just finished with an infection so they expect that.
Prolactin levels are showing signs of going backwards in time. I met with the doctor and when she came in she was at a 70 and through the heavier chemo this summer she went down to a 30 and we saw a lot of improvement. Since ending that chemo in September they have noticed these levels are going back up. This is bad. The immune system is starting to attack her Hypothalamus again and there is the reason we have seen an increase in appetite, mood swings, potty problems, and sleep issues. We are simply falling back to the start.
The doctor was not exactly sure what the next plan of action is and was meeting with her other Oncologist to see exactly where we need to go now. I can't see doing this for another year and with stronger drugs. I don't know how I feel about it all right now.
They also want to move ahead with the surgery on the eye and possibly the surgery on the toe. Still don't know how I feel about it. Especially before Christmas and then her 5th birthday is coming up. She wants a party with all her doctors and friends and family to come.
Coming up we have:
Endocrinology - Nov. 10
MRI - Nov. 17
Chemo - Nov. 18
Behavioral Psychologist meeting/testing
Sleep Study - overnight monitoring of her brain and actions
Nutritionist - I have to email her food for the next 7 days to the nutritionist then go from there
PS: If I sent you the family email and it had a picture called Katie Haven - sorry - her aunt is named Katie as well as her Nurse. :) I guess I should look at the pictures before sending them!
Actually what it means is that Miss Dawn and Dana (Pediatric nurses at JH Riverside) contacted us and asked if they could adopt Haven for Christmas. I was so overjoyed I wanted to cry. That's amazing. I'm sure all of you agree that these are the best Pediatric nurses you will ever know.
They are working on a project to get donations for Haven for Christmas on the stuff she likes most.
I thought about it and we had a trip planned to Disney but had to cancel it due to chemo and surgery. But as you will see in the above story - this probably wouldn't work.
So the best and top item Haven loves more than anything is Lauren. She can't wait for Lauren to come back to be with her. She is her best friend she says. So of course this would be a great gift - to be able to have Lauren more than once a week.
Otherwise I'd love the girls to surprise Haven with what they think she'd love. It is AMAZING that they would do this for her and love Haven as much as they do.
We're very excited and Haven is uncertain about the adoption process! :) Thank you all of you.
Sunday, October 19, 2008
She loves to get clothes but I know it's very hard to keep up with her sizing. She knows to never take the tags off until we make sure it fits. She is constantly changing. We were in an 8/10 but we are now in a 10/12. I know it seems REALLY big when you're at the store and how can a 4 year old wear a 10 year olds shirt. She does. She wears my shirts. Pants are extremely difficult. I am very worried about this winter - I do not know how I am going to keep her warm. 10/12 pants are about 2 feet too long and don't even fit her belly. She needs a 12/14 waist and a 5T length.
Shirts - 10/12 and blousy - nothing tight. She doesn't like anything tight on her belly because she can see the scar
Pants - 10/12 or 12/14 -- so far I have found 1 pair of sweat pants made by L.E.I. at Walmart that come in capri length. Capri length is perfect. No jeans of any kind. She can not fit in to any jeans no matter the size. They hurt her belly
Nightgowns - she wears them like dresses (please no Hannah Montana) size 10/12
She has tennis shoes but can't wear them. I just bought them but with her toe constantly infected we do not have her wear them.
As for Christmas suggestions:
Jewelry - this girl loves to dress up when her friends come to visit. Please no metal necklaces. The cheap metal necklaces are constantly making her have a rash around her neck. I have had to get rid of all of them. But colorful bead necklaces and bracelets are perfect.
Nail polish - she loves to have Dad do her nails
Make up - she loves lipsticks and lip glosses
Anything art/drawing related - she loves pens (please for us - no markers), scissors, crafts, anything crafty. The girl has so much of her dad in her that it can drive me crazy! :)
Haven does not play with barbies. She never has. Not even little dolls. BUT she loves stuffed animals and she loves the build-a-bear place (if you want to do gift certificate).
Clothes for her bears - best place is build-a-bear - not expensive and a huge selection and they fit the bears.
Anyway, I've had some emails requesting info. If there is something specific that you want to know if she can have please email me - firstname.lastname@example.org
We miss everyone. Love you
We'd like to send a thousand thank you notes every week....but it's just difficult. BUT Haven has made quite a few cards this weekend between naps. She has a special one for Kendall, which she said it's a secret as to what is in it - Grandma and Grandpa in Virginia have a special one, Grandpa and Grandma in Utah have a special card and she is working on a name for the doll she received. I'll get photos of the doll tomorrow.
THANK YOU Mom and Simon - the Walmart card really helps out - we're still trying to get out of diapers but with the added medications she's still having a hard time controlling it. She did pick out a movie with her card. I like her to get something of her choice when we receive the cards - so it's not only for her necessities. She picked out "Dora Saves The Snow Princess".
Thank you Shirley Anderson for constantly sending Haven little gifts.
Thank you Dad and Jeannie for the "wrinkly dog" and for sending the doll with your package.
Thank you Miss Dawn and all the nurses at Riverside Johns Hopkins. Haven watched "The Secret of Nimh" 50 times this week.
Thank you to everyone for caring so much about this little girl.
Saturday, October 18, 2008
So I was going through all of my shutterfly pictures of Haven as she has grown over the past (almost) 5 years. It is just crazy to think about her - I wouldn't even recognize her if I didn't live with her. These are pictures of Haven 3 years ago this coming Christmas.
Haven is still fighting this infection. We soak her feet two times a day and she gets the above medications twice a day. We do the eye drops twice a week which pretty much make her blind. She has been sleeping A LOT. I've never known her to take 2 or 3 naps in a day. We took her to the Podiatrist at JH and they want to do surgery on her toe. They said with the chemo and steroids it will continue to remain infected.
Some good stuff: Haven has been doing workbooks so much with Lauren and in the evening with one of us that she is progressing amazingly in her home studies. I know she's only 4 but she LOVES to learn. We buy 3 or 4 workbooks a week.
I was at Barnes and Nobles the other week and I was going through all the workbooks. The problem now is that she has done most of them in the Pre-K age group (3 - 5). The B&N lady sat down and talked to Haven for a couple of minutes about what she would like to learn then came over to me and said "I believe you should look at the 1st grade level and possibly the 2nd grade level if her dialect is any indication". So I kinda thought about it and moved to that section.
Haven has now been working in the 1st grade workbooks for a couple of weeks. I came home one day and she had been working on her math with Lauren. Well I need to see it to believe it. How can a 4 year old do math. So we went through a few pages in her book. She can add! She wouldn't even use her fingers. I tried to get her to count with her fingers but instead, she just looks up at the ceiling, thinks about it for a minute, and comes up with the answer. I was AMAZED!
So we have now started subtraction and she is starting to be able to tell time and count money. I am absolutely astonished at how smart this little girl is. She told me again that someday she is going to be a Princess Nurse like Dr. Cooper and help lots of kids. I love her.
Stryder borrowed Haven bunny ears!
Haven, Mom, Aunt Katie and Stryder on the Turtle Whirl.....one ride and I was done for a while!
Haven on the Frog Leap!
Dad and Haven
Haven and Stryder on the planes
Haven and me on the roller coaster - I didn't think she'd actually ride this! I'm too old for this stuff! :)
Stryder and Katie on the monster trucks
Dad and Haven do the big slide
Grandpa and Haven on the Turtle Whirl! The only ride he rode.
Aunt Katie and Haven on the Turtle Whirl. She made everyone ride this over and over! I could only handle it one time.
THANK YOU TO CASEY CARES FOUNDATION. Haven has never had more fun!
Sunday, October 12, 2008
Kris and I are working hard to get her strength back up.
While talking with doctors throughout the day on Friday I was also at the eye doctor with her. She had a follow up visit from her February visit. We went in before chemo started and this was a check up to see how her left eye is doing. In Feb it was 20/25 and now it's at 20/70. The doctor said she had to wear the patch 3 hours a day. Well, I know this won't happen and it's very hard to make her keep it on. So we talked and he decided it would be best to use eye drops. Twice a week we put a drop of this solution in her right eye which in turn causes it to blur so she is forced to use the left eye.
For now we will not use glasses as the doctor would like her brain to start using the eye again. Spoke with the doctor about surgery and more than likely she will have surgery on the eye when her chemo treatments are finished to tighten the muscle.
Today was the first day of the drops and she had a very rough time with it. Not only dealing with an infection and more new medication (that is horrible by the way) but to not be able to see. She was very upset she couldn't focus on the TV and she tried to cut some cards out with scissors but couldn't see where she was cutting. She stomped around saying we were mean to her and that now she can't do anything. Even taking a shower didn't go over well tonight, finally she just asked if she could take a bath to make it easier.
Needless to say, Haven is handling everything as well as she can and we're being super understanding of her needs. We just try as hard as we can to make her happy and to give her big hugs as much as we can.
She sees a Podiatrist this Tuesday to check her toes and chemo is next week. Then we have a meeting with her Endocrinologist the following week. The next MRI is coming up in November and then we're off to the sleep study. It will be a very busy schedule from now through Christmas.
We hope everyone had a great weekend. Happy Birthday to Candy (last week) and my mom (in Korea). We miss seeing the family.
Take care...love to all
Wednesday, October 8, 2008
When our time was up for Dad and Jeannie's offer of paying for Lauren we told Haven that Lauren couldn't come anymore. Haven was so upset (we've never seen her like that about someone not family) that Kris and I had a talk and we'd just have to figure out how to keep Lauren at one day a week, even if it was giving up other items.
Dad and Jeannie called Kris knowing Haven absolutely loves Lauren and have offered to keep paying one day a week for Lauren. We are SO EXTREMELY HAPPY! Haven can't wait for it to be Lauren day. Every day she asks if her friend is coming over. She gets all dressed up and stands in front of the mirror forever, checking her hair and clothes.
THANK YOU SO MUCH!
Seeing Haven smiling and having fun makes our day happier.
We're waiting for those results.
After a few days we now have two toes that are infected. She can barely walk they are so swollen. The blisters in her mouth have also come back like crazy. Of course, Kris found her picking on them so they are even worse and bleeding.
The past few days she has been sleeping a lot due to the infection and fevers. I had a 17 hour migraine on Monday and couldn't even move without wanting to be sick. So it was perfect, we slept for 13 hours together on the couch. Neither one of us moved.
I am calling JH again today to get more info but here are her next few appts:
Eye doctor - review her vision, angle of her eye, review for surgery next year on her eye muscles
Endocrine - check up - as we haven't met with them in a while. They will be able to check over her weight and possibly get us on track for next year
Sleep Study - another sleep study as her sleeping has gone back to what it used to be. A lot of screaming and talking. We are not back to sleep walking yet but we are getting up and down in bed a lot.
Chemo - we have another round on Oct. 21 - so I plan for her to be sick the week before Halloween.
Monday, October 6, 2008
Here are some photos of before he left.
We took the kids to Build-A-Bear. Grandpa bought them the bear (skin) and Haven and Dad picked out some clothes for her bear.
Haven getting ready to stuff her bear. Stryder standing by.
Stryder made a Turtle....I'm not sure what his name is. I only have cell phone pics from this one.
Haven and I hanging out with the family. Everyone was over for dinner and games.
Stryder and Haven. Haven watches him very close....just incase he tries to do something boyish with her princess toys. Can't have a boy playing with them.
Time for bowling...Grandpa is up. It's very scary when my dad bowls....even on the Wii. He really believes he's in the bowling alley. I was worried someone was going to get a black eye! :)
Haven bowling. She has a very fast ball....probably the fastest of all of us. She hit quite a few strikes and spares. She was on my team!
Final scores.....This was around midnight and my dad decided since he won finally he better scoot home. His score: 255
Me and my baby bro! I can't wait for him to come back home. We had a lot of fun just goofing off.
Baby Stryder - they went to the Renaissance Faire again and this time it was Pirate's Weekend. So Stryder got all duded up and was the best looking pirate. We chose not to take Haven this time as it was raining and we can't chance her getting sick.
Wednesday, October 1, 2008
They have been working on special places for Haven to visit. Recently Kim called me and asked if Haven would like to go to Dutch Wonderland in PA. Normally I would have no idea what that was but Haven saw it on TV and Kris pulled up the web site for her a couple months before. She has wanted to go for about 4 months now but we weren't sure about her going.
We received 4 tickets to Dutch Wonderland this week and plan to go this coming weekend. Haven is even more excited because baby Stryder will be visiting again and he can ride some rides with her. Should be a lot of fun!
Then I also got an email from Kim that she had a couple passes to the Zoo. Haven has wanted to go to the zoo for a long time. She says she's never been to a zoo but she did go to the San Diego Zoo - she was only 1 1/2 at the time! :) So last night I pulled up the Zoo web site and she watched the Peguin cam for about 45 minutes. Talking to the Penguins and asking me about them.
She is more than excited and is making her thank you notes today!
Thank you again Kim and Leslie. We appreciate everything you do for the children!
I was going to take her out for the weekend with the family but with the constant rain (downpours) I decided it would be best to keep her indoors, especially when she's not at her strongest.
Sunday Haven asked me for a pretty bandaid because she wanted to make her toes pretty. Hmmm....but she didn't want me or her dad to see them. Ok.....I know she likes her privacy now and doesn't want to show us everything. But when it comes to the toes I need to see. I took off the bandaid and much to my disappointment - another infection!
Her foot was pretty swollen and the toe had more green stuff coming out. Kris cleaned her toe and worked on it for a while then we soaked it in her foot bath.
Monday morning Kris called me at work saying her toe was discolored and still more green stuff coming out. So this means we need to pack up for Johns Hopkins. I called her nurse and probably argued more than I should have but I didn't want to have to bring her all the way down to Johns Hopkins. I got her nurse to agree that we could go to her pediatrician's office (which is a JH satellite office) and they would get the results from them. Within 30 minutes the ped's office called me back (our appt was going to be Tues at 1:15) and said they could get me in immediately.
I called Kris ASAP and he said they were already there. YEAH! Haven was terrified she was going to get a poke and stressed herself out. But no poke.
She got to see Miss Dawn, Peggy, and all of the other nurses. She called me after she left telling me how much they loved her and she got hugs and stuffed animal and stickers and papers to color. THANK YOU RIVERSIDE! She was overly excited and showed everything to her Grandpa when he came home.
It is now Wednesday and my brother has left to go back to Iraq. Lauren came over today to hang out with Haven. She really likes when Lauren comes over. Leah is a nurse that comes over as well. Thanks UT Grandparents for that. Haven looks forward to it every week. She picks out a pretty dress, does her hair and her nails, and today Kris said she made him look all over the house for a specific necklace that she wanted to wear.
I have lots more pictures to put up - I've just been recooperating from my brother's visit. It was a lot of late nights and early mornings to work.