Happy Birthday - It's A Boy - Day 0

Today was day 0, or TRANSPLANT DAY! It is definitely a day of celebration. As we were sitting there, my dad mentioned that he couldn't believe it was finally here. Transplant seemed so far away on Nov. 13th. Melanie has been through a lot to get her to this point! So, we had a little birthday celebration in room 812 this afternoon. I picked up the balloons and forgot that she couldn't have latex ones. I had only brought 1 mylar! On our way by the gift shop, Greg said, "We should get one that says IT'S A BOY." We thought it was fitting for the donor, and the boy blood Melanie was going to be receiving. Great thinking, Greg!

Melanie is always in heaven when Kaden is able to be there. My dad, Kaden, and Cami got there at about 2:00 p.m. They said they would have the cells at 3:00. We really don't listen to time schedules any more, so we weren't surprised as the time kept getting pushed back.

Melanie opened a present from Cami. It's not a birthday party without a present. Greg and Charise headed to the airport to pick up Kim, while the rest of us waited for those stem cells to be delivered. We were just going to be missing Mike, who was in Wyoming for a wedding. We thought of you, Mike and Steph!

We killed time by taking silly pictures. We also spent some time talking and remembering some things about grandma Perkes.

Still waiting! This was the first walk Melanie has taken for a few days. The opened up a new area on her floor, so she could walk more than the usual hall.

The stem cells arrived at about 4:45 p.m. from the University of Utah. All donor cells go to the U of U for processing and such. Then one of their technicians has to deliver them to LDS hospital.

Before the cells could be given, Melanie had to receive a bunch of other meds. She had Benedryl, a steroid, Tylenol, and another anti-rejection medication. They also had to monitor her heart rate and oxygen levels before and during the infusion.

There was a lot of paper work for the nurse (John) and the technician (Amber) to go over. They had to read all the numbers off the bag and double check everything. It was comforting to see how thorough they were.

The bag looked like it was full of tomato soup that was the consistency of water.

There are 5.06 million stem cells in this bag. There are also some red blood cells, white blood cells, and such along for the ride. A total of 389 million cells. After the cells started making their way into Melanie's body, she started saying that she felt weird. We kind of think she was feeling a bit anxious. Yesterdays ordeal was so scary for her, I think she was afraid of a repeat. We tried to get her to breathe slowly and relax. Her heart rate went up bit. She said she could feel the liquid flowing through her, and it felt weird. She started to feel sick to her stomach and finally lost it. It was hard to sit there and watch her feeling so sick. John gave her some more Benedryl and once the cells were all through, she started feeling better.

A little transplant 101: The radiation and chemo Melanie received this last week was to wipe out her immune system and stop her production of white blood cells. Now, when the donor cells are given, her body doesn't have the juice to fight and kill the cells that are foreign to her body. The hope is that the donor cells will start to regenerate and make a new immune system for her, and that they will notice any residual leukemia cells as foreign and kill them. The down side is that his cells could notice that other organs (skin, liver, kidneys, etc.) are foreign and start attacking those. This is called graft-vs-host. Dr. Hoda said that a small amount of graft-vs-host is actually good, but a large amount brings a lot of complications. So, we hope the new cells in Melanie's body are doing good things, and her blood counts should start going up over the next week, as her new cells start setting up camp.

After Melanie started feeling better, the party began!

Melanie was glad that John was her nurse for this procedure. He has been a nurse for 15 years, and knows his stuff! He is very aware of Melanie's needs and takes such good care of her.

We had red velvet cup cakes that tasted just like mom's cake! So yummy! We sang Happy Birthday to her, but couldn't light the candle to blow out.

Melanie chose the flavor, but wasn't able to eat one tonight. We put it in the fridge and she can enjoy it when her appetite comes back.

Kim is here for a couple of weeks again. It is always great to have her here. She is such a help, especially for my mom! Greg, Charise, and Kim didn't make it back in time to see the cells, but they still got in on the party!

Party!

Party!

One party hat just wasn't enough for Kaden!

The Benedryl kicked in, and poor Melanie was wiped out. Good things are going on in that body, while she sleeps. We will be fasting and praying tomorrow that all goes well from here on out.

You made it, Melanie! We love you!!

Rabbit Blood = Peter Cottontail

Before I get to today's adventures, I have to post a couple of pictures that Mel sent to me from last night. Actually, I have to mention first that Kevin and Gina Ellsworth and their daughter Ashlee came to see Melanie on Sunday. Kevin and Gina (and family) have been family friends for years! Kevin is our Optometrist as well. My mom forgot to take a picture while they were there. They were bringing Melanie down some knew glasses on Sunday, but forgot to bring them. So, Gina sent them to Ashlee and she delivered them to Melanie last night. She also brought a yummy dinner for Melanie and my mom to enjoy!

A big THANK YOU to Kevin and Gina for the new glasses and to Ashlee for the food!

Melanie is still enjoying her 14 days of Valentines! What a wonderful ward Melanie has!

Today has been a hard day for Melanie. She continues to fight the nausea, and today she got some new medicines to prepare her for transplant tomorrow. Tacrolimus is an immunosupressive medication that helps to prevent graft-vs-host disease. The other medication was rabbit blood or ATG. Why give her rabbit blood? It kills the lymphocytes to prevent graft-vs-host disease as well. This medicine caused Melanie to have low blood pressure, a fast heart rate, shortness of breath, fever, and just not being able to breathe very well. It was a scary day for her! The ATG can cause you to have anaphylactic shock, so it was a bit worrisome before they gave it to her. They counteract all of this with a BIG dose of Benedryl, steroids, and Tylenol.

When Melanie sent me the pictures she had a message that said, "Ben was working really hard to add some entertainment because he knew I felt horrible. Dr. Hooda told me yesterday that the rabbit stuff was barbaric." How lucky Melanie was to have Ben there today!

Melanie was really drugged up on Benadryl. This was Ben's attempt at being a rabbit. I guess they were calling her Peter Cottontail today.

They wanted everyone to know Melanie was getting her rabbit blood today! Ben printed off these great pictures!

I think Melanie was hesitant to let them push the "ADD" button!

She is holding her faith rock, worry rock, and a Diamond Back dog tag that Jan Triplett gave her that says, "Diamond Back Finish Strong". When I last spoke with my mom, she said that Mel is feeling a little better. Her blood counts are starting to go down, so she is feeling weak and tired.

Melanie wanted me to say that she can have visitors. You just need to be healthy. Also, a few people have asked about a mailing address to send cards, packages, or whatever. The address is:
Intermountain LDS Hospital
East 812
Melanie Balls
8th Avenue and C-street
Salt Lake City, Utah 84143

Tomorrow is the BIG day! We are going to have a grand birthday party!

Day 2 of Chemo

Today had an awful start. Mel spent the morning throwing up. She was so sick. She received her final pre-transplant dose of chemo today. I talked to her in the afternoon and she was feeling lots better. She was given some prednisone and also some synthetic...dare I say...marijuana. She refused to take it when it was first offered during the last hospital stay because they told her some of the side affects. This time around, she was feeling so sick that the side affects weren't as big of a concern. She said that she has had some blurry vision in her right eye, but feels much better.

She called to talk about things for Kaden. She is still a terrific mom even from her hospital bed. She makes sure that Kaden has what he needs. He is one lucky little man.

I can't believe how close Mel is to transplant. This day felt so far away in the beginning of all of this. What a journey! I know there are still huge hurdles ahead, but this is a giant stepping stone.

You are inspiring all of us Mel. We love you! Keep fighting and staying strong.

We will be having a fast for Melanie on Sunday. If you would like to join us, please do. We have a strong testimony of prayer and fasting. We are all praying that the stem cells that Melanie receives will accept her body and do their job with few complications. She is heading into transplant with great odds! We think it is a miracle to have found a perfect stranger who is a perfect match, with her same blood type. I mean really, what are the odds? It is awesome!

We will report tomorrow on how Mel's body tolerates rabbit's blood and maybe explain why she is receiving it. They told us in the family meeting, but I can't remember.

Chemo Day 1

I was able to go and spend some time with Melanie and my mom today. Melanie was still feeling nauseous from radiation! She said she was just sick of the constant nausea. Hopefully that will subside soon. She has to basically force herself to eat anything. Nothing sounds good and thought of eating created more nausea. However, if her calorie intake does not come up, they will put her back on the "moo juice".

I made sure to take some pictures!

Melanie's Relief Society has been doing the 14 days of Valentine's. Every day, Melanie gets a bag (Monica's sister-in-law works in the hospital) full of different things. The heart wreath in the background is one. She has gotten gum, chapstick, peanut butter, oatmeal, etc. There is also a card made by a Primary child in it as well. It is such a fun thing for Melanie to look forward to each day!

Whenever Melanie gets any medication, they have to scan her ID bracelet. She is getting good at just wiping that arm over for a quick scan. Of course this is how they make that lovely 28 page itemized bill. Her nurse Kyle said that on her Mt. Everest climb she is taking, the nurses are her Sherpas. I thought Kyle looked a bit too tall to be a Sherpa!

Today was day 1 of her two day chemo. The medicine she is getting in Cytoxin. It hangs so nicely! It can reek havoc on your bladder, so she has to have another medicine called Mesna and a lot of fluids. Dr. Ash said that a lot of people who have difficulties with radiation tolerate Cytoxin well. We are hoping for that!

Tammy gave Melanie her Cytoxin today. She is the nurse that told Andy Williams about Melanie. She is really nice and fun to visit with!

Another one of Melanie's nurses is Melanie (nice name)! She is also so much fun and really sweet!

Melanie was able to talk with Grandpa Perkes this evening. It was great for her and I know it brought many tears to her eyes. It is hard for her to know she will not be able to attend Grandma's funeral.

Saturday will be transplant, and Melanie's second birthday!

Pictures

Here are the pictures that go along with the previous post. For some reason, it wouldn't let me edit them on!

Derek was Melanie's transporter to and from radiation. He would always take her on different floors to avoid any germs he could. My mom was lost in his maze.

Melanie was so glad they figured out a way to do the full body radiation with her laying down. They couldn't start without the little blue bag by her mouth.

She lay behind a plexiglass so the rays that weren't as strong couldn't go through. She didn't need to get more than was needed.

She had to wear the face mask to ring the CELEBRATION bell!

6 full body radiations and 6 head nukes later, she is done!

She even got to keep the mask for memories! I guess she was getting some great looks going down the hall with the mask on.

SHE DID IT!

Ringing The Bell

Happy day, radiation is officially over and done with! Mel had her total body this morning and made it through fine. She had her head boost this afternoon and they ended out waiting for about an hour for a few minutes of radiation. Mel got nauseous while they were waiting, but was able to hold it together.

Melanie got to ring the "celebrate" bell after she was all done today. The silver bell is on the wall and when a patient is done with their radiation treatment, they ring it and everyone applauds. We are all applauding you Mel...you did it!!

Mel slept a lot today she is wiped out!

Tomorrow she will get chemo. This type of chemo is meant to wipe out her immune system to prepare her for transplant. We are getting closer!



In other news, Melanie lost her Grandma Perkes today. They got the news at about 7am. My mom said that they sobbed together. This is what Mel wrote on facebook today:

"I have been told I have angels (family) watching out for me from above. Another angel was added to that list."

We love you Grandma!

Jeannette Perkes

Radiation- Day 5

I just got off the phone with my mom and she gave me the run down of the day. Mel had her full body radiation this morning. She made it through without getting sick, thank goodness! She got her brain boost in the early afternoon. My mom said that Mel has been doing lots of sleeping. The radiation makes her tired and so does the Adavan. She hasn't had much of an appetite because nothing tastes good to her. My mom compared it to having morning sickness all day long...not fun. Mel got a package today from her ward Relief Society, they sent her some Valentines Day decor for her room and some treats. Thank you!

Tomorrow is the last day of this yucky radiation...you are almost there Mel...you are doing awesome!! I love you and miss you bunches!

Half Way There

Today was Peggy and LeRoy's 39th anniversary! My dad drove down for the day, and to take my mom to dinner. I was extremely glad they had a chance to go out and celebrate their wonderful marriage!

I was able to go up and spend some time with Melanie, while mom and dad enjoyed dinner. While I was there, Melanie was scheduled to have her brain boost of radiation for the day. Today was day three of radiation, which means she is half way done! They are figuring out some things that are making the process a lot better. Today they sorted out a way to allow Melanie to lay down during her full body radiation. She said it was so much better. There was no puking during the process, so today was a better day!

I went with Melanie down to the radiation therapy area so I could document how the brain boost portion of her treatment looks. We'll have to get some pictures of the full body another day.

The nurses from radiology come and give Melanie a nice ride down. It is quite a walk, so this is a great thing. Melanie says that the ride down makes her nauseous as well, so it is a good thing they always give her Adavan before they come.

Once in the radiation therapy room, she gets to change beds. During the brain boost, she lays on her back. The bed in the background is what they figured out today for the full body. She has to lay on her side now for that one.

The face mold was not the funnest for Melanie to have made, but it looks pretty sweet!

After she lays down, they put the face mask on and then screw it down to the table. There is NO moving the head at this point!

You can kind of see a black line down the mask. This divides the head. Everything behind the black line is being treated and everything in front of the line is being blocked. Good thing the radiation only takes about three minutes, because Melanie feels very claustrophobic! She says she does not like radiation at all. It just makes her feel so yucky. Worse than chemo! Her glands get swollen and she just feels...blah. Only three more days!

Melanie had a visit from some friends in her ward, Monica and Mark Edlemeyer. Monica used to be Melanie's visiting teacher. It was nice of them to stop by. I know Melanie appreciated it, even though she was feeling a bit drugged up on Adavan. She is loving her cozy quilt from the faculty and staff at Providence Elementary. We like to read all the nice messages each person wrote. What a treasure! My dad was able to give Melanie a father's blessing before he left this evening. I know it brought a lot of comfort to her.

7 days until transplant!

First Day of Radiation

Yesterday was Melanie's first day of radiation. My mom and Melanie were suppose to be there at 7:00 a.m., which was a lot earlier than they were hoping. Traffic was pretty bad at 6:30, so they were about 20 min. late. They did her brain boost first. Melanie can lay down for this. My mom said Melanie just didn't like how tight the face guard was. I talked with my mom before the full body radiation, and Melanie was doing good. At about 8:45 p.m., I get a text from Melanie that reads: That radiation process sucked

I guess the full body radiation process took 5 hours! They had to make sure the lung shields were working right, so they would do something, then take an x-ray and wait for a doctor to check it was all good. Once they started the radiation, it was horrific for Melanie. She got really nauseous and had to leave a few times, get sick, then come back for more. She has to stand in a weird position, which caused her back to spasm a few times. There is a bicycle type seat underneath her that she can "lean" on if she feels like she might faint, but they really don't want her to sit on it. One of the nurses commented that it looks barbaric. They were also upset that no one called them and had them bring some anti-nausea medication down to her.

When I spoke with my mom earlier today, she said today it was a quicker process and they kept medicine in Melanie to alleviate the nausea. I hope the next four days are better as well. I know Melanie was really concerned about being able to stand for 20 min., especially once her counts get really low.

Hang in there, Melanie! You are so strong and can get through this radiation! Love you!!!

Temple Square Adventure

Today was Melanie's final Kepivance injection for this round. She has started to notice some of the side effects. She has been a little more tired and nauseous. She also discovered that it makes your skin sensitive. Her hands and feet are sore, especially when she puts them in warm water. She says her mouth and tongue feel a bit different. She notices her tongue particularly when she drinks. If it helps her to not have a mouth and throat that looks like hamburger (as the nurse describes it), then any side effect is worth it.

Since she is checking in to the hospital for a while, I let my kids miss school and we all went to Salt Lake for some adventures. I waited in the car with all the kids, while Melanie received her injection. She wasn't very long. Our first stop after that was going to get a tour of the Beehive House. This is the house of Brigham Young.


It was neat to see all of the beautiful furniture. Melanie and I were in awe at the gorgeous pianos that seemed to be in every room!

There were two really nice sister missionaries that gave us our tour. Melanie was able to take her mask off, since we were the only ones, and the missionaries were healthy. She was grateful for that!

After our tour we headed to the Church Office Building to ride the elevator to the top. We were able to get a great view of Temple Square, and we even had a great view of LDS hospital.

Kaden really wanted his picture taken in front of the temple. It was a bit chilly!

We headed inside the Joseph Smith Memorial Building for some lunch. We ate at the Nauvoo Cafe. Actually we ordered our food there, but then took it and ate it in the lunch room in the basement. It was too crowded in the cafe for Melanie to take off her mask and eat. One of the receptionist was kind enough to tell us a better place for her to eat. Greg walked across the street from work and joined us for lunch.

We were glad that Greg joined us for a bit. The kids always love to hang out with uncle Greg. Every time we walked below Zions Bank, they would look up and wave.

Melanie and Kaden had not seen the Joseph Smith movie yet, so that was our final activity. There were only about 10 other people in the large theater besides us. So, once again, Melanie was able to enjoy the movie mask free!

Being the great aunt that Melanie is, she gave Chase, Brooke, and Austin a Valentine bag tonight. They were super excited, but also sad that she would be leaving our home tomorrow morning. They have had a lot of fun together!

Kaden made it back to Cache Valley and mother made it here. Melanie is really nervous for radiation tomorrow, and is not looking forward to the long hospital stay. One of the students she had last, Braydon Shiess, and his family sent my mom with a new DSi for Melanie. She was so excited. She will be able to really enjoy it, and the Brain Age game, over these next several weeks. Thank you! That was so thoughtful!

10 more days until transplant.

Kepivance #2

Today was another quick drive into Salt Lake for some more Kepivance. We were only at the hospital for about 30 min. Kaden wasn't so excited about the quick trip, but he endured.

The dosage amount is quite small. Surprisingly high cost for such a small thing. Melanie says she can start feeling some of the effect. Mostly she says her gums feel weird and the roof of her mouth. We'll see how things feel in the next few days.

The nurse who pushed the medicine today is Jared. He was Melanie's nurse when she was in before. She really liked him. He works in the clinic most of the time, so she didn't get to have him upstairs much. I guess one day he sat in her room and talked to her a lot about transplant. It was really comforting for Melanie!

Melanie and I are often "geeks" at night. This is how we sit, and Steve always teases us. Melanie is still in high spirits. She has mentioned a few times that she gets more nervous the closer it gets to Thursday. Kaden will go back up to Logan tomorrow evening (a big thanks to Robert, my brother-in-law, for taking him back), so I know it will be a tough evening for Melanie. My mom will be coming down tomorrow night, for the Thursday admit and beyond. I know she brings such a comfort to Melanie when she is around. We have a fun day planned tomorrow! We head for the last Kepivance (for now), and then we are going to spend some time in Salt Lake. We will be sure to take a lot of pictures!

Not 1, but 8 Tattoos

Yes, Melanie received 8 of her very own tattoos today! Four on her chest and four on her back. They are actually just little dots to mark where her lung shield needs to be placed for radiation. They are tattoos and permanent, unless she has them removed by a dermatologist. The radiology nurse said a dermatologist could remove them like a mole, but the scar may be bigger than the tattoo. It just looks like a tiny mole. She said her tattoo experience was just a little prick with a needle.

As you can see, we headed to the hospital today for Melanie to get some items of business taken care of before she is admitted on Thursday. Besides having her lung shields made, she also had a face guard made. They will use this to protect her face, when they do the extra brain boost. This is something she is still extra nervous about. I guess she was laying there and the nurse said she was going to do the face mold now. Melanie was closing her eyes and relaxing, when all of a sudden her face was covered with the molding material. She could only breathe through her nose. Melanie suffers from claustrophobia, so it was hard not to scream or tear it off her face. She did some great breathing techniques and made it though! I really wish I could have been there with the camera.

Melanie also had number one of three IV's she will be receiving before Thursday. Today, tomorrow, and Wednesday, we have to go to the clinic for her to receive a drug called Kepivance. It is given through her central line and costs $6,000.00 a pop! Seriously! Is it made of gold? Anyway, it will increase the mucous lining in her mouth and throat. They do this so that hopefully she will not develop mouth sores during her next round of chemo. It will make her feel like her mouth, throat, and tongue are extra thick, but if it works, that is great!

Kaden is staying down here until Wednesday night. Melanie wanted to spend as much time with him as she could before Thursday. They are watching a movie together right now, so I am on blog duty. We knew that today would be a long hospital day. She was about 2 hours at LDS, and then she had a 45 min. appointment with another doctor in Sugarhouse. Kaden would have been extra bored, so I actually took him and Austin to the Church History Museum, while Melanie was getting the IV and radiology work up. We had a great time.



I had to include this picture for our Cache Valley followers. It is some of the oxen and a baptismal font staircase from the Logan Temple. We were able to see a lot of neat things, and learn a great deal about the history of our Church and Prophets. It really helped fill the time as well! After we were done, we picked Melanie up and headed to her next appointment. This time, we just waited in the waiting room. Kaden and Austin were very patient!

It has been so much fun for our family to have Melanie here with us. We have loved every minute of it! Living down here the past 5 years, we haven't spent so much time with her! She says we are going to be sick of her by the time May rolls around. NO WAY! We love having fun, cousin Kaden to play with for these next few days as well!

Today is day 12 on the countDOWN to transplant!