Warning - It's a long one! Very, very long!

Hello my wonderful family and friends. I decided I really need to do an update on my own. Everything is chronologically backwards. Enjoy!

I go to LDS hospital for a clinic visit at least once each week. A clinic visit is when I get my labs drawn; I talk with a PA and report any concerns or new problems, review my meds list, and get a quick check over; last, I talk to one of my doctors (I have 4 of them and was informed that a 5th just joined the team) about my current condition and any concerns brought up at tumor board.

The last two weeks have been filled with lots of sick time: nausea and everything that comes with it. I spent three consecutive days throwing up everything I tried to eat resulting in not being able to take my meds. The vomiting stopped and changed to dry heaves. I could at least keep my meds down. I've also had diarrhea (lovely, I know). Needless to say I have been very dehydrated and exhausted over the last 2 weeks. Dr. Peterson told me I would most likely need to be admitted so they could figure out what was going on (all labs were negative for obvious concerns). I went to my clinic visit yesterday (Fri. 9) fully expecting to be admitted, and am pleased to note that I was not. I have been running IV fluids and magnesium for the last couple of days. I believe doing so has helped my body heal a bit and have more energy. I'm still not 100%, but my guts are finally going in that direction. I think I am on an upward swing in this area.

Dr. Peterson informed me of my chimerism sorts on Tuesday (July 6). They were not the best. My bone marrow (results from biopsy) had 79% recipient cells (my cells) and 21% donor cells . The best scenario would be for my marrow to show 100% donor cells. My peripheral blood (the blood cruising around in my body) showed 64% donor cells and 36% recipient cells. Dr. Peterson said they would be discussing my case at tumor board on Wednesday; i.e., tumor board is when all the doctors and coordinators get together and discuss what needs to happen with each individual patient.

Yesterday (July 9) I talked with Dr. Asche to get a better understanding of what is going on and to find out what was decided at tumor board. Apparently, it is okay for the 2 chimerism test to show different totals; i.e., my bone marrow is mostly my cells and my peripheral is mostly donor cells. Dr. Asche said the main number they look at is the peripheral sort and that it is best for it to be 100% donor cells. The current concern is that I will have relapse leukemia because I have so many of my own cells cruising around inside. As of now I am cancer free! We just don't want it to come back so some treatments continue. It was decided at tumor board that I would do a quick tacro taper. Tacro is an immunosuppresent drug that helps keep graft-vs-host disease at bay. I will do a 2-week taper off of the drug. After the taper, they will start me on a new drug to prepare my body to receive more donor cells. I don't remember the name of the drug, but it is supposed to be MUCH milder than radiation and ATG (a.k.a. rabbit blood). I don't know how much of the new drug I will have to get. After I get the new drug (I don't know how much) they will transplant more donor cells through my central line. The focus is on getting the donor's T-lymphocytes into my body. None of this can take place until my counts go up. It appears that the virus or whatever I've had has caused my counts to drop. The only lab I remember is my hematocrit. It is now 24.5 with normal being @40. My platelets were okay. My neutrophils dropped. I don't remember my white cell count. If my counts don't recover, they will do another bone-marrow biopsy to determine what is going on. For now, I go in for a lumbar puncture with methotrexate next Tuesday (July 13). Labs will be drawn and hopefully some final decisions will be made.

I have been home from Salt Lake since @ April 30. I must say that it has been fabulous! Sure, I do go to SLC a lot and sometimes spend a few days with Greg and Charise, but for the most part I am home. I've added some pictures of some of our activities this summer.

I don't have any pictures of my grandpa and now grandma Kathy's wedding. They were married on July 8. What a beautiful day and ceremony. Grandpa had been sick so I said hi and blew kisses from a distance. He and Kathy both understood. It was just great to see my family whom I have not seen for so long. I love my extended family!

Oh my dear daddy. We had some good laughs together one Sunday while my mom was at church. The conversation went something like this:

Me: "Dad, there isn't any dishwasher soap and I don't think you should put that soap in the dishwasher."

Dad: "This is what I put in when you guys were gone. Mom told me to put the liquid soap in."

Me: "The liquid soap was probably liquid dishwasher soap. I really don't think you should put that soap in."

Dad: "I'm pretty sure it was this (as he holds up the Dawn regular dish soap)."

Me: "Okay, but I still don't think you should put that in the dishwasher. It might ruin it too."

Dad: Pours the soap into the holes and turns on the dishwasher.

Soon after I heard my dad in the kitchen. I don't remember what he said. I remember him chuckling a bit and calling for me. I walked in to find bubbles all over the outside of the dishwasher and on the floor (unfortunately I didn't have my camera at this time).

Me: "You should really start listening to me dad."

Dad: Continues laughing and begins clean up. "Don't tell your mother about this at church. You let me tell her on our way home."

Me: "I want to announce it in Relief Society." After some strong looks and words from my dad I promised him I would not say a word. He got to do the telling on the way home.

Each year my family has a 4th of July barbecue. We have it whenever we can get most of our family here. This year we had our family celebration on July 3.


Dad makes the best burgers! I bought some slider buns this year (small buns) and had a slider burger. It was delicious, but I have a hard time getting my mouth around the top and bottom bun to take a bite. It was simply nice to eat something!

Lindsey is who we call our "little white tornado." She has no fear and does not stop doing. She thought the fence was pretty cool.

Tate and Taylie are best buds. They do tend to get into trouble every now and then, but play very well together over all.

Kaden lounging around with his lovely iPod. I must admit that I want to throw it in the canal once in awhile.

Greg and Charise. Who knows what Greg is doing. He is a man of many abilities.

I love this picture of my dad, LeRoy. He is one of my solid rocks. I love him much.

I wasn't concerned about the container with the orange smoke bomb until Kaden sealed the lid on tight. We all ran to the other side of the lawn. Nothing happened so Kaden finally went and kicked it down the little hill. All was well!

Kaden has discovered fireworks and got himself banned from youTube this year (mother's ban). He was the one in charge of lighting the fireworks. His cousins enjoyed his firework shows for several days.

Grandpa getting after Tate and Taylie. I don't remember what they did, but my brother-in-law, Eric, and I got a pretty good laugh.

This year's valley fireworks were held on Friday, July 2. The date for fireworks seems to be determined by the date of the Cruise-In. We had our festivities at the vet clinic in North Logan. My sister-in-law, Stephanie, worked there for many years and her sister KrissAnn works there now. We have a barbecue and too many treats. Great times!!! I actually ate a hot dog this year. Again, I was just glad to eat food. The best thing was that it was a Nathan's all-beef dog. So good!

Greg's Niel Diamond pose during Coming to America. When he was little he would get on the kitchen counter, use a multi-color pen for his microphone, and sing Coming to America. We loved his pose.

Me and Charise

A small part of our clan.

Taylie and Mike loading up at the trunk spread.

Stephanie and Lindsey

Greg and Lindsey

Kaden and Lindsey - Greg used to take Kaden around on his shoulders when Kaden was little. Kaden would hold onto Greg's ears and have a great time.

I have always considered Kaden to be a natural athlete. He has lots to learn about playing various sports, but he is quick to learn and works hard. One of the best parts of the summer has been going to Kaden's baseball games. He has been blessed with a great coach and great teammates since he began minor's league. He has had either Grandpa Balls, Uncle Mike, or John Lee for his coach. John Lee has coached him the most and Kaden really respects him and looks up to him. This year was the first year for Pony League. The field-size changed and so did some rules. There was a bit to learn. Kaden played his best at each game; his brain fell out only 2 times that I can recall - there's just something about 3rd base. Kaden usually plays 1st or pitch when in the field. He is working on speeding up his pitching delivery, and I look forward to seeing him pitch next year. He is an awesome 1st baseman who doesn't let too many balls pass him by.

This picture cracks me up! It so looks like he is grabbing the 1st baseman's behind. The first baseman has his batting gloves in his back pocket. Kaden's hands w/batting gloves are in front of him - he's ready to run. No butt pinching going on!

Ready to run.

Checking the runner on first before he makes his pitch.

Delivery! He had some good pitches and some bad. That's how it goes.

Taking the pitcher's mound.

Game complete.

Kaden with some of his teammates: Sterling, Trevor, Raleigh, Austin, Kaden, Bryson, Nathan, and Daniel trying to get out of the shot (you bum).

After final game. Didn't take first in their league, but did take second.

Back row: Coach Hillyard. Derek Drake, Wyatt Christensen, Daniel Lee, Bryson Hillyard, Nathan Lusk, Kade Sorensen, Daniel Osbourne, Coach Lee, Coach Holden

Front row: Kaden Balls, Brock ?, Raleigh Robinson, Austin Jeppson, Trevor Holden, Sterling ?

Missing: Robert Erkenbrach (I have no clue how to spell that last name)

Thanks to my cousin's father-in-law, we had the opportunity to go to the ReAL vs. San Jose Earthquakes game on June 28. We got to enjoy a suite with some great family and new friends.

Mike and Stephanie came with me and Kaden. It was their first game.

We could see right down into the team tunnel. Awesome!

We got to see the MLS cup won by ReAL last season. Awesome!

Kaden, Dave Checketts, and me.

Dave Checketts is one of the owner's of ReAL. We got to enjoy the game from his personal suite. --Now, please do not start sending requests to Dave seeking tickets. He is a very kind person, but his suite is filled with friends and family.-- This fun event was arranged for me and Kaden by a common acquantance. One of Dave's old friends. Thank you, thank you, thank you! We loved every minute of our time and it was wonderful to spend some time with Kaden without feeling like I had to worry about protecting myself from everyone arround me.

Our next fun time is next weekend. We have our great Hyde Park celebration on the 16th and 17th. Most of the family will be on a thank you float throwing candy to good ole' Hyde Parkers. Who new the thought of throwing candy could be so exciting!

Feeling Yucky

Mel has been really sick today. She can't keep anything down. I feel so bad. Her and mom went down to Salt Lake today since she has a lumbar puncture bright and early tomorrow morning. They took her to the clinic at the LDS Hospital when they got to Salt Lake and they have her hooked up to fluids and anti-nausea medicine. We'll have to wait and see if they'll be able to do her LP tomorrow. Hopefully the fluids and meds will help her feel better.

Biopsy Day

Melanie had her bone marrow biopsy at 11:45 am today. She wasn't put completely under like she wanted, but they sedated her and gave her plenty of pain medication. She had a male doctor perform the procedure at her request. He was excellent! He was able to get the fluid in one try and the piece of bone in one try as well. The procedure took 25 minutes. When I talked to Mel, she was sore but able to walk (sigh of relief). Mel is really glad to have this behind her after all of the nervousness leading up to it.

Mel's blood levels look great. Everything is up with the exception of her platelets, although they didn't go down by much. Her doctor said that everything looks good on paper and the Chimerism test will tell us if things look good on the inside too.

We got the results of Mel's spinal fluid test from last week and it showed that her spinal fluid if free of cancer!!! That is some great news!

We will get the results of her Chimerism test in a couple of weeks. This test will tell us what percentage of cells in her body are donor cells. We are hoping for a high number.

Melanie and Kaden will be going to a ReAL Salt Lake soccer game tomorrow. They are so excited!! I'll be sure to post pictures.

Thanks for the continued prayers on Mel's behalf. Your support is so much appreciated.

One Lumbar Puncture Down!

Melanie had her first of four lumbar punctures yesterday. It went well. She was sedated so she didn't have any pain. Afterward she had to remain flat on her back to prevent a spinal headache. She was really tired after the procedure and for the remainder of the day.

This morning she was nauseated, but thankfully it subsided. She went back to the hospital to have her Methotrexate (chemo that was injected into her spine) level checked. The doctors said that the chemo that is injected into the spine doesn't cross the blood/brain barrier. Mel's blood work suggests otherwise. Her levels were high enough that she has to take some medication. So the chemo does end out in the blood stream.

Mel also had a treatment that prevents pneumonia. She has had it before and it is nasty stuff! Last time she was alone in the room, but this time someone stayed with her. The staff that stayed with her had to wear a mask so they wouldn't breathe in the toxic stuff.

As far as blood levels go, all of Mel's levels were down. Dr. Peterson said that they aren't concerned until her levels start to go down every week. Having blood levels that go up and down is normal for everyone. Mel will need to continue to be careful about germs, dust, molds and sick people. We are all working hard to keep her healthy.

Mel came back home today in time for Kaden's baseball game. She will have her Methotrexate level checked tomorrow at Logan Regional.

Next Thursday is Biopsy day. Mel is really nervous about it considering her last experience. Please keep her in your prayers.

Stay strong Melly! We love you!

Hi Again!

Things are looking good for Mel. She had some blood work done at Logan Regional Hospital and her numbers were all up! She is optimistic and happy. She is enjoying spending time with family. Her nephews and nieces love to play with her "new" toys that have been in her classroom for years.

On a more somber note, one of Melanie's neighbors in the LDS hospital has passed away. He was in pretty bad shape. It serves as a reminder of how unpredictable leukemia can be. It was some tough news for Mel and our mom to receive.

Melanie will be heading down to Salt Lake on Monday night. She has a lumbar puncture scheduled for Tuesday morning. I asked Mel if these make her sick and she doesn't honestly know because she has always been in the hospital on so many other medications. I guess we'll know soon enough. Keep her in your prayers. She will stay in Salt Lake over night to be close to the hospital should anything go wrong. I know she is hoping to be back for Kaden's game on Wed.

We love you Mel!

No Lumbar Puncture Today

Melanie was scheduled to have her first of four lumbar punctures today. She and my mom headed down to Greg's on Wednesday evening, ready to stay Wednesday and Thursday night there. They woke up and drove to the hospital for her early clinic today. Her blood draw was great! All of her counts were up from last week. YEAH! Her platelets were the same, but we will take that over dropping. The other thing that was high was the Cumadin in her blood. This is the medicine to help thin her blood. Because it was too high, they could not do the lumbar puncture today. Melanie will stop taking the Cumadin and they will check her levels in Logan next week. Depending on were they are, they will schedule her next clinic and an LP.

Since there was no need to stay over night tonight, they just went back up to Cache Valley. Of course, they did a little shopping (Costco) before leaving the Salt Lake Valley.

I feel a bit out of the loop these days. Without Melanie being down here, I don't get to see her much at all. I am so glad she is home and doing well though! Love you, Melanie. Hopefully I will get to see you soon!

Giving Up Control

Melanie had a clinic visit yesterday which ended out being an all day affair much to her chagrin. Her hematocrit was really low and so she needed a transfusion. They waited for 3 hours for the blood. It was really frustrating for her and our mom to just sit there and wait. Kaden had a baseball game that Mel wanted to be there for. She said, "I don't miss baseball". She made it to a few minutes of the game, but missed seeing Kaden up to bat.

I remember sitting in Mel's pre- transplant meeting and Dr. Ash telling her that the hardest part about post transplant life is giving up control. It's hard no doubt about it. Mel has so much that she wants to do each day, but her body just won't let her. She tires so easily, yet she keeps going and works hard to live life as normally as possible. The clinic visits are an inconvenience most of the time, but so necessary as Mel continues her battle.

Next week Mel will receive the first of four spinal taps which will include chemo being injected into her spine. We were really concerned about the chemo killing her hard-at-work donor cells. The Dr. explained that it won't affect them, they are just hoping to kill any lingering leukemia cells in her spinal fluid. She will have another bone marrow biopsy the following week. Mel has requested to be put completely under for this one. I hope they grant her wish! Her last biopsy was horrific.

Melanie has still been working on getting her classroom packed up. She isn't able to lift anything or handle the dust covered items, so she directs everyone on where to put things. Our cousins have been such a huge help to her! Emily has donated many hours in helping Mel. It is so neat to see everyone helping out in their own way, when and where they can. Thanks to everyone!

An Update

Sorry about the lack of updates. There hasn't been much to report which is sometimes a good thing. Mel is doing really good! She has been spending a couple of hours a day working on getting her classroom packed up. I know there are a lot of emotions about not being able to teach next year. Mel loves being a teacher. Our cousin Emily has been helping Melanie with this huge task of packing up her room, thank you so much Em. Mel tires really easily and Emily's help has been immense.

Mel has been to two ball games this week. Kaden's baseball season is in full swing and his biggest cheerleader is and always has been his mom. Mel hates to miss a single game. She has kept the teams stats for the last few years and she isn't able to do that this year because of her tremor. At least she gets to just watch the game and not be asked every few minutes what the score is.

We thought it was going to be overcast for the game tonight, but it ended out being really sunny. We had to be sure to keep Mel out of the sun. Thanks to George Lusk for being a lifesaver and letting us use his umbrella. It was funny to see the looks that some of the kids were giving Mel at the game. She lowered her mask a couple of times to show the kids that it was just her under there. She has a good sense of humor about it and doesn't get at all offended.

Cami and Mel at the ball game today.

Melanie will be going to Salt Lake on Friday for a clinic visit. They will be doing her usual blood work along with a test on her tears. They trap some of the tears from her eyes and test them for signs of Graph vs. Host disease. Mel still has a lot of things ahead...a bone marrow biopsy and some spinal chemo injections to name a couple. She is staying strong and taking it a day at a time. We are all so happy to have her doing as well as she is. She is a miracle!

We love you sweet Melly!

Clinic Day

Mom and Mel went to Salt Lake today for a clinic visit. Mel's blood levels are looking good. Everything was up with the exception of her hematocrit. It wasn't low enough for a transfusion though which was nice, when she requires a transfusion it adds hours to the visit. Mel found out that her central line is coming out on its own. This isn't a welcome thing because if it does fall out then Mel will have to be poked whenever they need blood. Having her central line is so much easier! It allows the nurses to give her anything she needs intravenously, quickly and without needles. We hope her line will stay put for a little while longer. The site of her line entry looks so sore and a little infected...ouch! They have decided to start weaning Mel off of the magnesium drip and start giving it to her in pill form. It is really hard on the stomach so they are doing it slowly to see how she tolerates it. Mel also received a breathing treatment today that is pretty nasty. It helps kill fungi and prevents pneumonia. Mel has to be in a room all by herself as she breathes it because it is pretty toxic. I can't remember the name of the treatment, it has a weird name. Anyway, we hope it does its job in keeping Mel pneumonia free.

Mel was able to come back home after her clinic visit! It is such a treat to have her home! I love to sit on her bed and talk or watch TV with her. I missed the simple things while she was gone that will never be taken for granted again.

I love you Mel!!

Happy Mother's Day Mel

Melanie has often said that the hardest thing about being sick for the last few months has been the time spent away from Kaden. They have really stuck together through the ups and downs of Leukemia. I think they have both learned to appreciate each other more and have learned to cherish the time they get to spend together.

Being a single mom has been really challenging and I think Mel has done a terrific job in providing for the needs of Kaden. She has worked hard to get her education despite the demands of being a teacher and single mother. Mel loves being a mother! I think she is raising a great young man! Kaden is so blessed to have a mother who loves him unconditional, with all of her heart!

Happy Mother's Day Mel!

As far as an update goes, Her labs looked good on Sat. She goes to Salt lake on Wed. for a clinic visit. She is feeling tired, is always cold, and has a tremor, but is happy, fun and smiley despite it all! It is nice to have Mel home.

Wax On, Wax Off

Today Melanie had her first experience with eyebrow waxing. Before she and Kim headed back up to Hyde Park, we headed to her friend Suzy's new salon.

Melanie has always been nervous to have her eyebrows waxed, but I think she learned that it is not that bad! Suzy also trimmed the hair around the edges of Mel's head. Believe it or not, something so simple made a big difference!

Suzy couldn't resist teasing Melanie a bit. No, she has not grown hair in her ears!

Austin has been a trooper going shopping, eating, and visiting salon's. It has been a great couple of days.

Thank you, Suzy for helping Melanie to feel more beautiful!

Origami Birds

We have been having a grand time these last few days. Kim and Melanie arrived yesterday morning. Melanie was a little subdued. She had learned that morning that one of her good friends, Janine Ward past away. Melanie and Janine have been friends for years. It was shocking and sad for Melanie.

Melanie spent some of the afternoon working on paying bills. She hasn't been in the mind set or availability of her bills for a long time. It felt good to get some of them checked off the list. As she is started to get some of the medical bills paid, she is even more grateful for all the donations!

Melanie is still required to have her magnesium IV every day. As long as she is on the Tacro medication, it will be a must. Some people are able to take a magnesium pill, which would allow Melanie to have her central line taken out. She isn't too quick to do that, because it makes transfusions and blood draws so much easier!

Having aunt Melanie here wouldn't be the same without some DSi download. Austin LOVES it!

A few side effects of Melanie's medicine and treatments makes clipping her fingernails a challenge. First, is her constant shaking from Tacro. We were laughing that she couldn't hold still enough to clip them. Secondly, her fingernails are peeling. She has a new layer growing, so the layer on the top is peeling off. However, she still managed to give herself a nice manicure today!

Today we had some adventures. We went for lunch at a yummy place here called Flour Girls and Dough Boys. They have great sandwiches and delicious desserts. We arrived at a great time. It was pretty empty, so Melanie could take her mask off and eat in peace. After lunch we went to Target and then Costco. By the time we made it to Costco, Melanie was pretty tired, so she rode on a moving cart. When we were starting to leave the store, this cute old man with a cart asked Melanie when she would be done using the "scooter". She told him we were done and that we could move her stuff to his cart and then he could use the one she had. After we were done transferring items, the man pulls a yellow piece of paper out of his pocket and proceeds to fold it into an origami bird. It was so cute of him! It made us all smile.

Melanie and Kim are heading back up to Hyde Park tomorrow afternoon. Melanie has a good friend, Laura, visiting from Wisconsin she wants to see. She will be able to get some blood work done on Saturday at Logan Regional, so she doesn't have to come back down that day, and she will be able to attend Janine's funeral on Tuesday.

Our thoughts and prayers are with the Ward family at this time.

Back to Clinic

Melanie had a clinic visit today in Salt Lake. She and Kim came down this morning and will stay in the area for the rest of the week. Her appointment went well. They drew labs and met with one of the PA's. Her pulmonary function (lungs) went down a bit from where she was before the transplant, but they said that is normal. They are happy to see how well Melanie is doing. The nurses also commented to Kim that they are so glad she was able to go home for a bit! Along with normal labs, they also drew her 100 days post transplant labs. They probably won't have the results from that for a couple of weeks. Melanie was pretty tired when they were done, and was resting when I talked with Kim. Her red blood was down a bit, so that definitely affects her energy. She has another clinic visit next Tuesday, and several other post transplant test in the near future.

Kim and Melanie are coming to stay with us for a few days, so I will try to take some fun pictures of our adventures!

The Fundraiser Event

Saturday was the big fundraiser event. Mother nature kept it cool and wet at times, but that didn't stop the wonderful supporters! It was amazing to see the outpouring of love and support for Melanie. The event raised just over $26,000.00!!! Melanie was in awe and wonder at that number. She is so grateful for all who gave so graciously! This will really help to relieve the medical burden of now and in the future. THANK YOU, THANK YOU!! There were so many donations made and money given. It was humbling to see someone walk up with just a book at the garage sale, and then write a check for $50.00! We live and grew up in such a wonderful community! Cami knows the list of volunteers better than I do, so she will add some personal "thank you" on here. Cami and her volunteers did such a great job planning and organizing the event. They spent so much time! You ladies are all outstanding!! I wanted to put a few of the pictures I took from the event. Mike was the one running around clicking photos, when it was hopping busy! We will be updating and adding to this post over the next few days!

Enjoy the pictures!