Updates 04

09/05/07

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May 2004
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Update on Mel 5/9

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Update on Mel 6/23

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Update on Mel 7/9

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Aug 2004
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Update on Mel 8/14

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Sep 2004
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Update on Mel 9/01

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Update on Mel 9/23 12:05pm

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Update on Mel 9/23 11:04pm

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Oct 2004
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Update on Mel 10/01

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Nov 2004
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Update on Mel 11/01

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Dec 2004
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Update on Mel 12/31

 
Update on Mel 5/9

Melody started radiation just before Easter and has been tolerating it well. The daily trips to Children’s hospital San Diego have been doing some good. Melody is back to her happy self again. She makes jokes, laughs, enjoys company and even signed her Mommy’s Mothers day card. (“I love you, Melody”)

This was a busy weekend in Hemet. Melody’s cousin Skye turned 7 on Saturday and Melody attended her birthday party in the morning. THEN that afternoon was Melody’s 7th Birthday Party. It was a blessed busy day enjoyed by all. And Monday, the 10th of May, is Melody’s actual 7th birthday and she is making a visit to her 1st grade class to deliver cupcakes and juice.

Melody had many visitors over the weekend. From Family, friends and even a motorcycle club made an appearance to drop a hefty donation and a certificate naming Melody an honorary member of the SoCalStars. Not forgetting to mention a club T-shirt signed by all who rode for Melody. And a cute little teddy bear in leather for her to hug with pride.

Melody enjoyed the day along with her parents and extended family and friends. It was a special gift from God to be able to celebrate with everyone.

These days Melody is quite busy with treatment. She leaves home at 10am and returns by 2:30pm after a 160 mile round trip and special time with Mommy and Daddy. All the while Devin is in school. Doing what he does best.

TV, snacks, visitors and waiting for the mail man keep Melody happy and healthy. Each day or so she picks a different food that sounds good and then she moves on to the next. i.e. Rice Krispies for breakfast, lunch and supper, KFC chicken all day, thanks to cousin K.C., yogurt all flavors and bubble gum the last few days. Sweets keep this girl even sweeter!

As you may notice many physical changes have come over Melody. She was not laughing and now she is, she could not speak very much and now she can have fantastic conversations, she could not walk and now she is getting around pretty good with help from all. She is working hard to be independent again.

We must thank you all for the well wishes, prayers, gifts, love and concern. Robbie has said more times than we can count, that he wishes he could thank every one of you who have helped and continue to help, face to face. Because of you all they are able to stay home from work to be “one” as they work on this job. It is wonderful to see them side-by-side as a loving compassionate example for all.

God Bless You and Thank You with all our hearts!

 

Update on Mel 5/14

“Good news! We went to Melody's appointment today and saw Dr. Roberts. Robbie told the doctor how good Melody is doing and that the only thing she can't do is walk. Robbie asked the doctor if her improvement is typical. Dr. Roberts said no, that Mel is doing better that typical. He said they usually don't see improvements in kids with Melody's problem until after radiation is over. We started seeing improvements two weeks after it started. So, in two weeks Melody will start chemo-not the kind by IV but in a pill. She will do it for five days then nothing until the next month. Her hair will not fall out and the only real side effect she will feel is maybe an upset stomach but nothing like the IV chemo effects. This is the start of our MIRACLE, a month ago chemo was not an option for Melody.

So spread the good news and Thank GOD!”

Update on Mel 6/23

Melody is continuing to handle the many changes in her body with stride. Like anyone who is going through this she has her up and down days. She takes weekly trips to San Diego Children’s Hospital for blood work which wears her and her parents out. On June 29th Melody will have an MRI to see just how well the radiation and chemotherapy have affected things. We ask that you give thanks for what we have been given so far and ask God to bless us further with a great reading of the MRI.

Melody has a chance to leave California for a treatment called cyber knife. She could be going to Texas if everything comes together as she needs it. Again we ask for your prayers to grant us our miracle for Melody. This treatment will lengthen the time Rob will need to be out of work so I again ask you to give what you can. Every little bit helps them have more time together as a family, enables them to pay for living expenses at home and during treatments away from home and generally helps. Sprocket Entertainment, the Webmasters comedy Troup, donates a portion of all comedy shows for Melody. If you enjoy a fantastic evening out laughing for the benefit of Melody please check out the events page for the dates in the future. If you would like to host a fundraiser of any sort please contact us and we will help where we can. Car washes, coin collection in your office, run-walk events, or if you know of a restaurant that can donate a portion of funds raised a planned night, let us know. We will do our best to get Melody there and we will post all the information on the web page for others to see and join in.

Don’t forget to tell anyone you meet about the web site. Melody’s map fundraiser does not have that many pins posted and the numbers of letters to Melody have dropped off drastically. We thank those of you whom have sent cards, letters and dollars however we were hoping to cover the map. There are still states that Melody has yet to hear from. Hillary Clinton said “It takes a village…” and we ask that you look to your neighbors for ideas, cards and connections.

Come on…do it for Melody

Respectfully submitted from Melody’s Aunt Sissy

 

Update on Mel 7/9

The results from Melody’s MRI are in. The family wanted to share them with you all.

Original test results at diagnosis 4.5 3.3 3.75

Test results from latest MRI 4.0 3.0 3.75

As you can see there has been some shrinkage in the mass. To put the size into perspective; it is roughly the size of a golf ball. There is some concern with the ventricle openings and fluid build up and there has been talk of possible treatments to elevate the fluid. Shunt therapy is one possible treatment discussed. Melody has started another treatment called Protocel. It is a liquid taken orally and is designed to attack the cancerous cells. Compared to a normal cell, which carries oxygen, a cancerous cell is void of oxygen and the Protocel will attack those cells. The down side here is it is not covered by the insurance and is $95 a month.

The trip to Texas is still in the planning stages. The results of the latest test are being forwarded to the clinic and we should hear soon if Melody is a candidate for the Cyber Knife. If Melody is able to have treatment there the family will be driving to Texas. Understandably the ease of having their own vehicle with them is wanted. If you wish to assist with the expense of gas; a gas gift card will be most welcomed. If you would like to sponsor Melody for a month of Protocel donations can be mailed directly to the Schleigh home or sent through “PayPal” on the donations page.

In the near future there will be some changes to Melody’s Web page. We have pictures of Melody from birth to present, some art work we would like to share and the “Uncle Bill’s Haircut” plans are wrapping up. We ask that you continue to Pray for a miracle for Melody and strength for the family during this time.

Warmly,

Melody’s Aunt Sissy

 

Update on Mel 7/22                         

Just wanted to let you know that we are doing as well as can be expected. The past couple of weeks have been hell on Deb. And of course me.

We still wonder why Melody? We are not giving up not by any means. The Texas Cyberknife trip will not happen. Melody is not a candidate, the tumor is too large. We have been calling around to every neurosurgeon that will talk to us. Everyone so far has said that because of the location she is not a candidate for surgery.  How can God’s plan be to take such a beautiful, happy little girl so early in her life?  What good can come from this?  We spend every day begging Him for Melody’s life, does He hear us?  We taught her to not talk to strangers and to stay out of the street to keep her safe. We never thought this could happen to her. 

There isn’t much change in Melody.  She is still handling things as well as can be expected. She is still not walking on her own and that creates problems of its own. (Sore muscles and such.) She takes all her meds like a champ nine times a day. We don’t do a lot; she likes to play board games with her cousins and of course us. Let me tell you she can play a mean game of Candy Land. She loves to watch cartoons, mostly Sponge Bob.  I am always ask her if she wants to go rent some movies and she always tells me not right now, maybe later.

Make a Wish was here yesterday. Mel wished to go to Disney World. They asked her lots of questions. But the one that stands out in my mind is… If you could meet someone like a movie star or someone famous who would it be? Mel replied “JESUS!” Well I don’t know about you all but I not ready for her to meet him yet. Later I told her she wasn’t allowed to meet him yet. She kind of laughed and said “Not to stay, just to visit. I mean just go up there and meet him and then come back down.” I about lost it right there. I explained to her that it doesn’t work like that. I ask Jesus every day all day to talk to her let her know the he is with her. To please talk to her and comfort her. All I am saying is “I just not ready for her to meet him yet. Maybe in about 70 or 80 years.”

Well there is not much more to tell.  I’m sure Mel can’t wait for the weight from the steroids to start coming off. (Her poor little legs, I can’t even imagine.) It sure would bring more normal things to her life.  But until then I get to be the Melevator up and down the stairs.  Melody is looking forward to Disney World as is Devin.  I wish we weren’t going there this way. I want it to be on our terms not on cancer’s terms.

Keep on visiting Mel’s web page. I hope to get some new things up soon pictures, poems and a Thank You page. I have added some new links toward the bottom of the front page. Links to other kids and links to the attentive we have chosen for Mel. Please be sure to visit the pages of the other children the are also in need of your prayers. Be sure to leave us a message they are great to read and it is so nice to feel like you are not alone.

Thank you to everyone

Rob

 

Update on Mel 8/14

Hello everyone just a quick update. And I promise I will try to update more often. First there are a few new things on the site. If you place you pointer over the picture of Melody in the top left corner of the main page you get another picture. Its Melody today. The gold ribbon in the top right corner has its own story click it and you will see. The new guest book. Please sign it often. It is great to here from everyone, friends and strangers alike. Lots of new pictures. About 200 or so. Click on “Photo Gallery” and click on “Mel’s Life”.  Its Mel’s life from birth to today. Oh yea and we updated "The Story” and “About Melody”.

Uncle Bill’s Hair cut is coming. I hope to see lots of people here. 8TH DAY FALL will be performing. And it’s going to be great to see my brother get a hair cut (lol). Now you have to know my brother. The last time I can remember him having short hair was…..ok I can’t remember but I know it was short at least once.

Don’t forget about the comedy show its going to be a really fun night. I know it’s a long drive for a lot of you but please join us. Thanks to my sister Karen and, Sprocket Entertainment for everything.

Ok now for Mel. She is doing ok. No major changes in her health. We are trying to get rid of the steroids, we are down to 1mg a day. We should be down to ½ mg a day but headaches prevented that. So… we need to hold of for a week or so before we drop it down again. Her back has be hurting her and last night it got to a point where she couldn’t handle it any more so we called the Doc’s office and they gave us Vicodin for the pain. That seems to make the pain go away. They said it could be the extra weight or side affects from the steroids. (Those things are nasty to the body) It really sucks to see her in so much pain. We will be having a MRI in September. We are kinda (and I use that word loosely) looking forward to it so we can see how much MORE this tumor has shrank. And we know it has.  ;-)   

Games, games and more games. Old Maid, Doggie match, Rummy, Bingo and many, many more games. Melody and her two cousins Allison and Skye have been playing games and doing arts and crafts so often, I think the boards and there fingers are wearing out. I’ve never seen so many fuzzy posters and foam things in my life.

Well I guess that’s it for now. Like I said I will try and update more often. I know how much we look forward to reading the update that Cheyenne’s dad Roy does everyday. (What an animal! Just kidding Roy you’re the man.) There are other families that do frequent updates also so I’ll try and take lead from them.

Thank you for keeping us and all the other children that are fighting this beast in your prayers. I often wonder what we do with out ALL of you.

Keeping the Faith

Rob and Deb

 

Update on Mel 8/16

Wow what an afternoon! We went down to San Diego today so Mel could see the optometrist. We left here at noon and had to go to my folk’s house to drop Devin off for a visit. We arrived around 1:40 stopped for a potty break at Bam and Pops, dropped Devin off and went on the appointment.

The first thing the doctor said when he looked into Melody’s eyes was that she has a mild astigmatism (thank you Bammom and Aunt Sissy).  After Melody read the eye charts, the doctor told us that she is also nearsighted (thank you Grammy and Auntie Dawn).  The doctor also added a prism to the lens on the left side and it seemed to make the eye muscles do what was needed to correct the double vision.  Then the doctor told her he was going to dilate her eyes.  She cried because she was afraid of the eye drops but the doctor assured her that after all she’s been through the eye drops were nothing.  She laughed and let him put the drops in.  Afterward, they even gave her a cool pair of sunglasses.  Much nicer than the ones they usually hand out after your eyes are dilated.  When we got home, she showed them off to Allison and Skye.  Tomorrow, we will be shopping around for Melody’s glasses.  I thought she might be upset about it but she isn’t.  She is excited and wants to pick out a pretty case for them.  The doctor says they may bother her until she gets used to them.  After she does get used to them (about a month or two) we’ll go back for a follow-up to make sure her glasses are just right.

Now with that all said. When we arrived home at 6:45 let me tell you what we found. For those of you that know we got a new puppy. Bruce the German Shepard. 4mo old and about 50lbs (He’s going to be a big boy). Well he had a party while we were gone. When I opened the door…. WOW! He must have had a food fight with Jetta (also a German Shepard) there was dog food everywhere. They also played dress up because there were clothes taken out of the laundry. Oh yea and they were coloring with crayons two boxes one 64 count one 96 count. When he finished that he decided to brush his teeth with both toilet brushes. Finished with that he must have needed to relax so… he took a magazine off the end table and spread it out across the entire down stairs. It must have been easier to read that way. It’s a good thing he is so darn cute.

It was a long day but it was fun being together today. Melody, Allison and Skye are all coloring at the dinning room table with the crayons that are left and playing some card games. And just being loud and silly. The house is just about cleaned up now and I finished cleaning up the garage for this weekends festivities.

Just a note about email notifications. If you would like to be notified of future events, updates and what have you, register on the bulletin board. Be sure to include you email address. Please sign the guest book as often as possible, Melody as well as us, LOVE to read the entries. Even if it’s just to say you stopped by to check up, every one means a lot. 

Thank you for all the prayers for Melody, our family and all the children in the world that are in need. 

God Bless everyone.

Rob and Deb

 

Update on Mel 8/17 

Today was not a good day for Mel. When I woke her and mom (Deb) up Melody had to go to the restroom. Her back was killing her she was in a lot of pain. After breakfast we got ready to go hunting for glasses. We made it out to the car but she could not get in. So we decided to give it another go tomorrow. Needless to say we didn’t make it to the prayer room today either. Mel was a little disappointed because we were supposed to get new crayons.

The cousins came over later in the day. They played board games, card games, BINGO, (mom was the caller ;-))   and did some coloring. At one point they were all screaming and having a great time.

Because Mel’s back is so bad we haven’t been sleeping up stairs. So much for being the Melavator. So we decided to take the frame off the downstairs bed so it will hopefully be easier for her to scoot in.

Today is the first day in about 5mo. that Mel has not had a steroid. We are down to 1mg every other day. Once she is off them I will tell the doctor that he needs to come up with an alternative to steroids, one with less side effects. This weight is taken its toll on her as well as us. She has more than doubled her weight in the same amount of time.  We can’t even buy clothes to fit anymore.  Luckily Bammom can sew and has made her 6 beautiful dresses.

We thank God for each day. Keep praying for my little princes. As well as all the children in this world.

 

God Bless you all

Rob

 

Update on Mel 8/18

Today was a much better day for Melody. Her back was feeling much better.

We made it out today to search for glasses. We went to Wal-Mart (sorry Sis); we found a pair of frames right away. However they can not do the Prism needed to help the double vision. So….tomorrow we are on a quest to find a place that can make the lenses she needs.

After the news about the glasses we found a nice pack of crayons, to replace the ones Bruce ate. We also went into the arts and crafts area. We purchased some more paints, paint brushes, some paint stamps and some sewing stuff. Melody loves when Daddy goes with shopping because she doesn’t get a few things to choose from, she gets pretty much everything. After that we found a nice birthday gift for Cousin Allison. (Ha ha Alli I know what you’re getting). Melody also bought a new Bratz board game to play with the girls. She also purchased a little play telephone with her medicine money.

When we got home we rested from our little trip. A little later mom ran off to the grocery store, and Melody and I played the new Bratz game. (I kicked her butt ;-))Then we had dinner and watched the Olympics. Mel is right now sewing after she did a little painting.

The bed thing worked out great, easy in easy out. No problems, no pain. Mel slept great she didn’t get out of bed until 11Oclock.

Thank you all so much for the prayers for Melody and our family. I honestly do not know what we would do with out you all and your prayers. Keep sending them out for us as well as all the children and there families.

 Thank you all and God Bless

Rob

Update on Mel 8/19

Melody had a mixed day today.  After we got up, ate breakfast and got dressed, we went over to Wal-Mart to get some non-drowsy Benadryl.  She has been very itchy lately, not just on her stretch marks, but all over.  I think it may be from the Vicodin she is taking for her back.  We also picked up some more paint for her to use with her sponges that Daddy bought her yesterday. 

When we got home, she wanted to call to see if cousins Alli and Skye could come over and play.  Today is Alli’s 8th birthday.  Happy Birthday Alli!!!  I told her I would call, but explained to Mel that Alli might be busy with birthday stuff on her special day.  Alli was busy, and Melody understood (I told Mel that she wasn’t home, she was out doing birthday stuff), and I told her we would see her later at her birthday party.  Daddy and I took turns playing games with her.  I knew today would be hard on Melody because she can’t get up and play with the other kids.  When Alli and Skye come over to play, she has them all to herself, and they are so good to her, they sit and play and make crafts for hours on end when I’m sure at least sometimes they would like to be outside running around.  So, after being at the birthday party for awhile and watching all the kids run around and play, Melody burst into tears and wanted to go home.

But wait, there is a happy ending!!!  About 15 minutes later, Alli and Skye came over with a bunch of craft supplies!!!  It’s 10:15 pm right now and they are all at the kitchen table, laughing and having a good time.

We are down to 1mg of steroid every other day.  The doctor says that should break the toxicity and reduce the swelling as well as decrease her appetite back to normal.  I hope all of the extra weight comes off quickly so we can get out and go to the park and do other fun stuff when the girls go back to school.

Please keep Melody and all of the other children in your prayers. Thank you all for everything you have done.

God Bless

Deb

 

Update on Mel 8/20

Since we have started this time in our life, we have the privilege of meeting some amazing kids and there families. Tonight with a sad and heavy heart that I introduce to you Mikki (Michaela) she has gone to be with Jesus tonight. We have followed her through the past few months. You get to know these kids and find a place in your heart for them and it really hurts when then go. Please remember her family in your prayers. She is no longer in pain and is cancer free. Click on Mikki’s name above to see her story and leave her family a message.

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It was a good day for Mel today although it didn’t start out that way. Mommy forgot to give Melody her Vicodin at 7am, so her back hurt getting out of bed. About ½ hour after she got her meds her back felt better. We had Melody wait to eat until we could be sure her Vicodin kicked in, so she wound up having brunch instead of breakfast.

This afternoon, Debbie and I went off to Costco for a little shopping and of course we were told by Mel to look for arts and crafts stuff.  We found a new workbook and construction paper for her. (Who can say no to Melly?) The cousins came over while we were gone and played with Alli’s new b-day stuff, listened to CDs, did crafts and played games. When the girls returned home for some dinner, Melody and Debbie went to Target to spend Mel’s medicine money.  Melody has never been a medicine taker, and in the very beginning, Aunt Sissy suggested that for each time she takes her medicine good, mom and dad will put a quarter in her “medicine money” jar.  Seeing Alli’s birthday presents yesterday made Mel’s money start burning a hole in her pocket.  She needed a new pink purse like Alli’s and a Hilary Duff CD like Alli’s.  After we had a little dinner, Uncle Bill came up from San Diego with more cousins (Silver and Dakota) and Devin around 8:30 and visited for a bit before going over to Aunt Sissy’s. After dinner, the cousins (all of them) came over for more fun and music. It’s beginning to get quiet now, the ladies are going home and we’re going to bed early so Melody is well rested for the BIG day tomorrow.

Yes that’s right Uncle Bill gets a buzz! (hehe) I’m not sure how well Mel is going to do tomorrow being shy and all, but we’ve been working her up to it all week. She wants all of her cousin’s right there with her.  Yesterday Bammom and Grammy came up. Keep an eye out for pictures and a short video for those of you who can’t be here.

Well thanks to all of you who have been signing the guest book we just love them and look forward to each and every one.

Good night all thank you for everything, the prayers, thoughts, donations, cards, notes just everything. And a special thanks to Stan (aka Mr.S). With out him we wouldn’t be able to share this time in our lives with you all. Thank you Stan, thank you very, VERY much.

Thank you for all the Prayers for Melody and all the other children of this world who are in need.

God Bless you all

Rob

Update on Mel 8/21-8/22

What a great day we had yesterday. This will be more of an update for yesterday than today. But I will do another update for today.

Things started out kind of busy with getting ready for the big cutoff day. While everybody had a job, Melody and the cousins painted, colored and played games.

At about 4:00 people started to show up at the house. And it quickly got busy. Melody had a little trouble with the shyness early but after she got her hands on some shades she did great. We told her to imagine everyone walking around in Spongebob underwear.  The band (8th Day Fall) was running a little behind. All the bikers (Lone Riders) showed up shortly after 4:00 and what a sight it was. There were about 20 bikes and about 30 or so riders. What a great group of people. They really bring the life to the party. Shortly after their arrival, the band showed up and set up in about 30min and started to play. We really love them; you should check out their web page and think about purchasing their CD’s. (Keep your eye out for them).

At about 5:30 or so it was time to cut. Silver and Dakota (Bill’s girls) got to cut off the pony tail, then Mel went at it with clippers with some help from mom. I thought she would take a swipe or two and then want to get out of the spotlight. Boy was I wrong! She keep going and going and going. What a time she had smiling up a storm and I think I even heard a giggle or two out of her. After a while she was done and gave a few other people a shot and that head of hair.

Uncle Bill, I heard so many people say how great it was of you to do that. I would have to agree. You’ve come a long way and I don’t know what we do with out you. You take care of mom and dad’s house and Mr. Phil when they are up here and helping us. BILL, U DA MAN!!!

After the cut the band played for a while longer and then wrapped it up, signing CD’s and drumsticks. 8Th Day Fall, THANK YOU SO MUCH! You have done so much for us and we can’t say enough about you all. You will always be in our hearts and we will never forget you. (Even when you get HUGE and we are downloading your songs off the internet for free ;-) HAHA)

Thank you to Aunt Sissy for all of your hard work putting all of this together; to Peejay, Andrew and Devin for setting up canopies and tables; to Sarah the pizza Nazi (just kidding!!!) and KC for setting up and selling refreshments; and Renee for giving massages; to Stan for being the emcee and videographer; to Poppa for selling the tickets to the comedy show next week; to the local VFW for there donation; to Bammom for helping out wherever she was needed; and to everyone who came out to support us.  With our circumstances being what they are, we would not be making it right now without all of you.  You all mean so much to us.

 

God Bless you all and thank you

Rob and Deb

 

Update on Mel 8/23    

For the most part, Melody had a good day today.  After lunch, we headed over to Lenscrafters to see if they could make Mel’s lenses for the frames we bought at Wal-Mart.  They did.  The prism she needs sticks onto the inside of the left lens, and that had to be ordered.  It should be delivered in the next week or so and we will go back and have Lenscrafters put it on.  The doctor ordered stick-on prism so it could be removed if it didn’t correct the double vision.  They made the lenses and had them ready in an hour.  Wal-Mart warned us that Lenscrafters was expensive but I think they must make the lenses out of diamonds!  At least our insurance will reimburse us part of the cost.  While we waited, we walked across the parking lot to Target and Melody picked out a pretty case for her glasses.  It looks like a little pink purse.  When the glasses were ready, Melody tried them on and was surprised about how clear everything looked.  We know the double vision is caused by the tumor but the astigmatism and near-sightedness is not.  I guess she never knew that her vision was off.  We didn’t either.  We never had any reason to suspect she needed glasses.  She never complained and never had any problems in school.  When she ate her dinner tonight she took the glasses off because she was afraid she might get food on them and get them dirty.

After getting the glasses we came home to take medicine and picked up Alli and went to see Princess Diaries 2 (thanks TJ and Barb for the passes) and all was good until the end of the movie.  Melody started to cry that she had to go to the bathroom.  I don’t know why she cried, we had gone to the bathroom earlier in the movie with no problems.  We went home and Melody cried for the next hour and a half.  Every time I asked, she said she didn’t know why she was sad.  Ever since last Wednesday, Melody has had mood swings.  Crying one minute and laughing the next.  It is very hard on us because we only want her to be happy.  I’m afraid that it has to do with cutting down the steroid to every-other day last Tuesday.  We go to the doctor tomorrow and will ask about it and find out what we can do.  After all the crying tonight, she was back in a good mood.  Alli came back over and they were both joking around. 

Tomorrow will be a busy day; we drive down to San Diego to see Dr. Roberts

Thank you to everyone who has signed the guest book sending us uplifting messages. Thank you for all the prayers and good thoughts for Melody and our family and, all the other children and there families. Please keep them coming and know that we do not take anything for granted. We love you all.

God Bless you all and thank you

Rob and Deb

 

   

Update on Mel 8/24

 

What a long day. 160 miles and 6 1/2 hrs later we made it home. 

The doctor appt. went good.  Mel’s blood counts were good. We can start the Temador again (Chemo). We asked the Doc about Mel’s back and he is concerned. He said the steroids weaken the bones and that she may have small fractures due to all that, and recommended X-rays of the back so we can be ahead of the game. Mel put a stop to that real fast. She got really upset. Dr. Roberts re thought it and said ok we can wait so she wont have to go through it twice if the orthopedist wants something different. So we will be off to the orthopedist for x-rays and maybe a brace. That’s not going to be a lot of fun.

Good news however, we are down to ½ mg of Decadron (steroid) every other day for the next 2 weeks. Then if we do not notice any of the original symptoms they will be GOOONE!

Melody was in a pretty good mood all day.  She had a few cries, but they were over quickly.  After we got back from San Diego, we went over to the prayer room.  After that she worked with Bammom on some beads.  Alli came over for a little while and after she left Mommy, Devin and Melody played a Scooby Doo game.  Mel’s back seemed pretty good today.  We are being extra careful, we don’t want to hurt her or cause more damage.

If you haven’t already checked out the video from the hair cut please do its great.

Thank you all for all the prayers for Melody and all the other children in need. And thank you to those who have signed the guest book.

God Bless you all

Rob

 

   

 Update on Mel 8/25

I wish I could say this was a good day for Mel but we’ll just say an OK day. She wore her feelings on her sleeves all day.  It started early this morning when she woke up. Everything bothered her and made her upset to the point of sobbing. At least today she knew what was making her upset and she would tell us. Yesterday she would say she didn’t know what was bothering her and that makes us think something hurts and she won’t tell us. Melody’s back is feeling good today.  The doctor said the mood swings are probably from withdrawal of the steroids.

At one point she was all giggly. The newspaper people were here to do a story about the comedy show this Saturday. The photographer was getting her and Allie to do silly things with pink boas and boys were they laughing uncontrollably.

While I went to pick up some prescriptions and batteries for garage door openers and take Bruce for his shots, Mel and Allie made some little gardens out of egg cartons with flower seeds and grass seed that I picked up from a previous Home Depot trip.

Melody, Allison and Mom all played the Scooby Doo game, Candy Land, and Doggy Match this evening. And then Bammom playing Rummy (for kids) while Mom makes dinner and I do the update.  Right now Melody and Alli are coloring Hello Kitty stuff we printed off the internet and watching a Hello Kitty video.

Devin went over to a friend’s house today then came back over here to “the jumps” on their bikes. He’s watching TV in the back room right now. 

I do have a request tonight and I wouldn’t normally ask but here it goes. PLEASE, PLEASE buy your tickets to the comedy show and PLEASE, PLEASE come to the show. I know for a lot of you it’s a long drive but it would really mean a lot to us. You all ask what you can do for us and I normally so were ok for right now. Then you say well let me know. So I’m letting you know “COME TO THE COMEDY SHOW!” There I said it. And it feels kind of good. ;-)

Mel starts her chemo tonight. She will take it right before bedtime so she sleeps through the worst of it. She does really well even if it gives her a tummy ache. But like I said she sleeps through the worst.

Thank you for praying with us for our miracle. And thank you for all the prayers for all the other children of this world. Drop us a line or two or more in the guest book, we really look forward to them.

Good night and, GOD BLESS YOU ALL!       

Rob

 

   

Update on Mel 8/26

Today started out pretty good.  Melody woke up in a good mood.  We showed Mel her pictures in the newspaper and she was happy.  She had a belly ache early on but it went away after some medicine. 

A little later we went to Michael’s for some craft things.  Daddy went with, so of course, she got whole lotta stuff.  A lady in Michael’s recognized us from today’s newspaper article and told Melody she was a celebrity.  We were supposed to go to Wal-Mart afterwards for dog and cat food but Melody was excited about her all of her new stuff and wanted to get home, call the cousins and get to work on some crafts.  When Alli and Skye came over they all worked on beads, sewed with yarn and made Chia-Pet type guys that will grow grass for hair.

Later in the afternoon, Melody was doing crafts and trying to have a good time, but she just didn’t feel good.  Her tummy hurt, her back hurt, she got a headache and was very sensitive to everything around her.  We gave her medicine when she needed it but her mood never picked back up again. 

We don’t know what to do on days like this.  Melody’s mood crashes and the whole world crashes with it.  Please thank God there haven’t been too many days like today and pray for many better feeling , happier tomorrows for Melody.

Sorry for the late up date. We made a lot of new friends today so check back for new links soon. I will get back to you all time allotting. But do not think we are not thankful just overwhelmed 

Thank you for all the prayers for Melody and the rest of us. Thank you for all the prayers for all the children of this world that are fighting these terrible diseases.

God Bless you everyone.

Rob and Deb

 

   

Update on Mel 8/27

We had a little scare today. Melody woke up early this morning with a fever, sore throat and a stomach ache. We called the doctor and they said to bring her in. So with that, we got Mel out of bed and tried to get her to eat a few crackers before we headed off to San Diego.  Devin stayed home with Bammom.

When we arrived, they took vitals and blood and checked her blood counts and put us right into an exam room. Melody has lost 4 ½ pounds since Tuesday, the day we lowered the steroid dose again.  We are not worried; we were told she would lose the giant appetite as quickly as she gained it. Between the appetite slowing down and the sore throat, she has eaten, but not as much as she has been on steroids.  And 4 ½ pounds less weight on her back is great. The doctor came in a said Mel’s blood counts were good and she may just have the beginning of a virus or something. They are going to do some cultures on the blood and watch them for a couple of days.

We arrived back home around 4:30. Bammom had dinner ready for us we got here. Allison and Skye came over and played for a little while and returned home. We are just sitting at home relaxing from the long day.

A couple more things before I go. This is for all the East coast family and friends. Check out Matthew’s Miles – Walk For A Cure. This walk will occur on Sept. 18th in Logan Township NJ. They raise money for brain tumor research. Last year, during their first annual walk, they rose over $20,000. It’s only a 2 mile walk and I would appreciate anyone walking in Melody’s name. I’m not sure what you need to do to walk, but please check it out.

Also, Melody will be a featured child on Make A Child Smile ,I believe in September. This is a great organization and they make all these kids feel very special. They ask you to mail one or all of the featured kids a nice card or even a small gift. Melody really loves to get mail!  You can even check out the previous featured kids. If you have time sign up to be a part of this great organization. They are simply amazing.

You can click on the links to these sites in the update or I have placed links on the home page in the favorite links area.

Thank you to all our family and friends for everything they’ve done for us. Thank you for all the prayers for our family and especially Melody and for all the other children fighting this tumor and other illness.

God Bless

Rob

 

   

Update on Mel 8/28

Today was a REALLY bad day for Mel. Probably the worst since the end of radiation. The flu finally caught up with her and in a really big way. Since early this morning she has been throwing up. She hasn’t eaten anything since around 3pm yesterday and has been in the recliner all day.  I’ve asked God to take Melody’s steroid off weight quickly so she can get around easier, but this is a bit much!  (Just kidding, I know He didn’t give her the flu) She slept most of the day and watched a little TV tonight.  The nausea finally subsided around 9pm. This is a bad week for the flu, it is chemo week. Since the nausea has gone she has been able to hold down fluids. So we went for the chemo, and so far so good.

To say the least, we didn’t make it to the comedy show. It’s been two bad days in a row and we just needed to be at home today in the quiet, not to mention there was no way Mel could have gone.  Melody was really looking forward to the show, and so were we.  She had a big plan to spray Stan with silly string.  The show was videotaped so we will be able to watch it when we get a chance. 

Tonight Melody is sleeping in the recliner.  She is comfortable there and, because she is sitting upright, we can rest easier that if she vomits, she will not inhale it.  We are fortunate that her blood counts remain good, even during chemo.  If they weren’t, the flu could put her in the hospital.  Since she’s feeling better tonight, we think she is going to wake up starving!  And I know as soon as she is done eating, she’ll ask for the girls to come over.  Even being sick, she asked for them twice today.

A big THANK YOU to Stan and Aunt Sissy and everyone else involved for pulling off the comedy show tonight.  And a big THANK YOU to all who attended.  We would not be surviving financially without the help you all have given us.  Seen online: “A donation is a loan…and God is the one who will pay you back.”

Thank you for all the prayers for Melody and for our family we thank god every night for all of you family, friends and strangers alike. Please keep up the prayers for us as well as all the other children and there families.

God Bless

Rob and Deb

 

   

Update on Mel 8/29

Today didn’t get off to a good start but greatly improved as the day went on.  We woke Melody up at 8am to take her medicine and Protocel.  She threw it all up.  We think it was a combination of leftover flu and last night’s chemo that did it.  After moving back and forth between the kitchen chair and recliner 4 or 5 times, she decided to stay in the recliner, watch cartoons and then take a nap. 

Melody took medicine and Protocel again at 1pm and held it down.  At about 2 or 2:30 she was feeling good enough to eat and play.  Melody ate some chicken soup and it was the first food that she held down in almost 48 hours.  While she was eating, she had me call the girls to play.  Alli came over and they painted and made foam door hangers until 5pm and then had to go home to eat and get everything ready for the first day of school tomorrow.  When Alli left, Mel and Mom played the Scooby Doo game.  Melody got a big smile and did a silly little dance in her seat.  I thought it was because I was losing.  No, she told me it was because she was cheating!!! After that I got in on the action and played a couple of rounds of go fish, old made and, doggie match. Getting my but kicked on most of those games.

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