A Weekend Of Visitors

I was lucky enough to go to Salt Lake this weekend with my dad and Kaden. It felt so good to see Mel and give her a hug. Her presence is really missed here at home. She continues to fight! She is doing whatever the doctors ask her to do and has her eye on the prize of getting home and being with Kaden. There aren't as many unknowns this time around. Mel is familiar with the treatment and the feelings that she's having. It's still scary and the treatment seems counter productive, but Mel has faith in her doctors and in her Savior.

Mel was given her last dose of the super powerful chemo on Friday night. She continues to get chemo every night, but it isn't as nasty as that other stuff. Mel's blood counts are beginning to drop. They dropped quite significantly from Saturday to this morning. She has been so, so tired, and is starting to lose her rosy red cheeks and pink lips. She is more pale.

Shi-thead. This pole is Mel's constant companion, it delivers her life saving fluids, as well as chemo. So, it is kind of a love- hate relationship.

Dad and Mom.

 Mel had some visitors on Saturday. Her bishop came first and they had a nice visit. She also had a visit from some neighbors. Mel has such a knack for making friends and they bless her life. Her neighbors went over and cleaned her town home and have been so good to her. They had a great visit. They brought her a heart blanket and some other stuff. They also went and got her a sandwich at Jimmy John's...a welcome break from the hospital menu. These visits gave Mel a good boost to her spirits. Thank you!

I need to give a shout our to our parents. They are quite the team! They are great examples to us. They are willing to do whatever is needed to help Mel and Kaden. They have sacrificed so much and never complain or feel sorry for themselves. They are the rocks of our family. Love you two!!

 Today, mom, dad, Kaden, Ethan, and myself went to the hospital branch. It was a short, but powerful meeting. It was nice to feel the spirit. I know it gives my mom the spirit food she needs each week. What a blessing to have a branch there. Mel was given the Sacrament earlier in the day. She stayed behind and had a nap. She spent a lot of time sleeping today. As her counts continue to drop, she will be more fatigued. The medicines she takes also cause her to be sleepy. I find it peaceful to be there while she's sleeping. I couldn't help but wonder what the battle going on in her body looks like. Her body is fighting so hard!

 

Kaden and Ethan.

After Mel's nap, she went on a walk. Let me tell you, she books it down those halls. She wants to keep her lungs working and her circulation going.

Mom, Dad, Kaden (look how tall he is!!), Mel, Cami, Ethan.

The hardest part about our visit was saying good-bye. It is always tender. Melanie loves her son so much and being away from him is harder than any of the treatments. Kaden is her reason for fighting so hard. He is one lucky boy to have a momma who loves him so completely.

The plan going forward is to continue the chemo she is currently on for 9 day total (7 days left). After that, they will let her counts come back up while they search for the donor. She may have some spot radiation. Once they find the donor, they will have to take her the brink of death once again and then infuse her with the donor's cells. That's my understanding. It's hard to keep everything straight.

We'll be sure to keep you all informed. 

Continue to send emails and cards. It means so much! We hang up all of the cards she gets. Prayers on Mel's behalf are awesome too. We appreciated all of the well wishes, thoughts, and prayers. It's hard to put into words just how grateful we are. 

You are LOVED Mel!!

Induction Day 4

Today was another good day for Melanie.  She is still doing pretty good with her nausea.  I talked with my mom this evening at the tail end of her first chemo treatment for the day, and Melanie was feeling a bit sick, but she never lost it.  She gets a yucky taste in her mouth, when the first dose of chemo is going in slowly through her central line.  They give this over a one hour period.  The second dose, she can feel in her jaw.  They push this through her central line slowly, via a syringe.  Melanie feels zapped after the treatments.  Her counts are starting to drop, which makes her feel tired and sick.  The flushed face is still there and bothersome. 

Today my mom and Melanie were able to have a nice visit from my mom's cousin Janice Downs.  She lives in South Jordan, and was able to stay for awhile.  It was nice for my mom to visit and eat some lunch with her.  Visitors are always a welcomed distraction from hospital life.  Usually my mom is good to take a picture, but she forgot today!  Thank you for the visit, Janice! 

Melanie has  received a few cards and some emails that the hospital volunteer has delivered.  She loves to get them.  We hang the cards on her wall, so she can be reminded of the great support she has out there.

Tomorrow is the last day for the chemo regimen she has been doing this week.  They will see how her body has responded.  The mass in her breast has already softened, so that is a good sign.  We will have to see how low her counts go.  If they are too low, she will have to stay in the hospital.  Dr. Ford said that they would decide Monday what the next step will be.  She may be having the stem cell transplant sooner rather than later.  We are still waiting for word from Ladee about a donor.

Kaden and my dad will be coming down on Saturday, so Melanie has something good to look forward to!

A Better Day

Today was a much better day for Melanie.  All her nausea medicine seems to be working!  When I arrived this morning to visit, Melanie was sitting in the chair visiting with the physical therapist.  She had just gotten back from a morning walk.  Melanie has a goal to get up and walk three times a day.  The physical therapist actually released her today from their services.  They gave her some exercises to do every day, and feel she does not need their daily visits.  She is starting out a lot stronger this time.  The goal is to keep it up!

Melanie was able to even take a shower.  She was enjoying being able to wrap her hair up in a towel.  Something she won't be able to do soon.

One of the side effects and complaints that Melanie has from the chemo is her flushed face.  She also felt like her face was a bit swollen.  I asked her how she felt during the chemo treatment, besides nauseous.  She said it feels a lot like when she was doing radiation.  The more chemo she gets in her system, the more side effects she is going to start experiencing. 

After my mom and Melanie were showered and ready for the day, my mom and I ventured out to get us all some lunch.  They needed a break from hospital food.  Melanie had an appetite, and was excited for her Jimmy John's sandwich.  She would have liked it even more, if she could have had veggies on it.

I captured a great shot of Melanie playing with her "long" hair.  She is enjoying it while she can, she said.

After lunch, we took walk number two.  We enjoyed saying hi to all the staff and reading the Valentine's jokes they had on the walls.  Melanie was feeling good and able to go around 4 times!

We never got a picture of Dr. Ford the last time.  He was here when Melanie was first in the hospital.  He actually went on a mission and retired shortly after she arrived.  After his mission, they asked him to come back.  He is a great doctor!

I talked to my mom this evening, and Melanie had her first chemo at 6:00 pm.  This will be the time she has it every day now.  She did not puke again this evening, so that is a good sign!  She just gets tired and doesn't always feel like eating.  She will have her second chemo dose at around 11:00 pm.  Hopefully that will go well also.  There still may be a chance to get walk number three in there.

Here's to another good day tomorrow!

A Rough Start

Melanie had her first dose of chemo at 12:30 am, they had to make sure she was really hydrated, so it was an odd time. My mom said as soon as they started the chemo, Mel got sick and was for the rest of the night. Her central line was causing her lots of pain as well. It sounds like it was a long night with little sleep.

Today was better. She is on lots of medication! If I wrote everything down right... she is on 5 medicines for nausea, pain meds for her central line, a steroid, and synthetic marijuana (the last two meds are to boost her appetite). Mel was able to eat a bit today. She also took a walk, and got some sleep.

They started her chemo at 9pm tonight and Mel hadn't thrown up yet when I talked with our mom at 9:37 (to be exact).  :)

Our mom said that Mel is feeling really tired. She will want to do something, but her body just can't get the energy to do it. This time around is really different. Last time she was so sick before she went in, that she almost felt a bit better once her treatment started. This time, she was feeling great and is made to feel sick with all of this poison being pumped into her body.

Mel continues to have a great attitude about everything. She is so strong!

Greg found a link to the article about Mel that Angie posted about. Click HERE to read it. Her story is on page 10. Reading it brought tears to my eyes.

Remember Mel in your prayers tonight. :)

Hang in there Mel! We sure love you!

Induction Day 1

We finally have some answers after our pow wow with Dr. Asche today.  They had all of the test results in, except her bone marrow biopsy.  They did have the preliminary results.  Everything looks good!  There was no sign of cancer anywhere, except the spot on her breast.  This is not breast cancer, but leukemia.  Melanie really feels like it is a huge blessing that she got the lump, or she may not have had any signs that things were brewing otherwise.  They will still wait for the pathology on the bone marrow, but the preliminary results look clear. 

Dr. Asche made sure that we knew it was not a good thing that she was back, but it could be a lot worse.  She is healthy and it appears to be localized.  She mentioned that she doesn't like to throw out percentages and numbers as far as prognosis.  We were all on board with that.  Melanie can make her own percentage.

The battle plan is pretty much what we were expecting at this point.  Melanie signed the papers to give them permission to treat.  She will start her induction period tonight.  This will be 5 days of chemo, given to her for 1 hour every day.  After the five days, they will assess how she is handling the treatment.  If she is doing well, she could possibly leave the hospital and do the next 9 days outpatient.  She will have to stay in the Salt Lake area though (Greg's house).  It is not fun to read the possible side effects of the chemo.  The particular one they are giving her this week can do damage to the liver.  She may even go a little yellow.  Dr. Asche wanted us to have a good idea of what Mel is up against.  She informed us that they actually had a patient die of liver failure while doing the chemo.  Not that she is planning on that happening, but just wanted us to have a heads up.  The chemo can cause mouth sores and swollen, sore hands and feet (which Melanie had last time).  She will also lose her hair again.  Needless to say, it could be a tough week.

After her chemo regimen, they will wait for her counts to be right, and then they will do another stem cell transplant.  This should be in 4-6 weeks, if everything goes well.  We need to specify that Melanie's original donor was awesome!  He helped her so much, but Mel just needs a little tune up (as Dr. Asche put it).  They may do some localized radiation in this process as well, but that is yet to be determined.  Full body radiation like last time is out of the question!

Melanie is having such a positive attitude, which will go a long way.  She believes there is a higher power at work here.  She has amazing faith!  The hardest thing for her is to have to leave Kaden home.  He will be well taken care of by grandpa.

Melanie will be in room 806 this time.  The nurses call it room 6 with a view.  We will keep you updated on visitors at this time.  She is allowed HEALTHY visitors, but we will see how she is feeling after all the chemo.  Letters and notes are always welcome and would help her so much!  You can send a letter to:

LDS Hospital

8th Avenue and C street

Salt Lake City, Utah 84143

East 8th - 806

Cami also noticed that if you go on the hospital website (ldshospital.com), you can email a message, which a volunteer will deliver to Melanie's room.  Pretty cool!! 

Thank you again for all your kind words and prayers.  Melanie has a fight ahead, and needs all the prayers and words of encouragement she can get!

GO, FIGHT, WIN!!

Melanie's Claim to Fame

On Friday, my mom was sitting in the bone marrow outpatient clinic looking at this magazine.  She was casually flipping through reading a heading here and there.  She turned a page, and saw a familiar face!

It is hard to see from this lovely picture, but that is Melanie!  My mom looked at the receptionist and said, "That's my daughter."  Awhile ago, one of the staff members had asked Melanie if it was alright to publish a bit of her story.  Melanie said that was fine, but then never heard anything else about it.  Well, they did publish a great article about Melanie's fight and her positive attitude.  It was written by Dr. Hoda.  My mom got a copy for each of the kids.  I will have to figure out a way to scan it and put it in a form that is actually readable. 

Tomorrow is the day that we will find out more information.  We have a meeting with the doctors in the afternoon.  They will have all her test results (preliminary results from bone marrow), and should know exactly where the cancer cells are in her body.  They are planning to put her central line in and start chemo after the meeting. 

I know Melanie is anxious to hear the results and know what she is dealing with.  It is nice this time around to have a better understanding of things to come, and it is  a great blessing that she is starting out a lot healthier.

I will get on and blog as soon as I can after the meeting.  Thank you all for your continued prayers.  It means a lot to Melanie, Kaden, and our entire family.

Here we go again...

As many of you already know, Melanie has relapsed. She found a lump in her breast and has been in the process of getting it checked out. In this process, we've learned that her leukemia has raised it's UGLY head again (the lump in her breast is primarily water that will dissolve over time). There have been so many different emotions felt by all of us upon first hearing this news...anger, despair, fear, sorrow, exhaustion, just to name a few. There were lots of tears shed. As the reality of this has settled in, we have also had feelings of hope, faith, and trust. Melanie is ready to do what she has to, in order to give leukemia a good old fashion kick in the butt!

Melanie spent the day in Salt Lake. She underwent a lumbar puncture (with chemo injected), a PET and CT scan, and a bone marrow biopsy. I spoke with my mom tonight and she said Mel's spirits are good, but she is really tired. Sleep will be a welcome friend tonight.

We will have more details on Mon. about what exactly we are facing. The doctors have yet to determine where her leukemia is. It hasn't manifested itself in her blood stream yet, but there are cells somewhere. The doctors will meet with Mel and our parents on Monday at 1:30. Mel will get a new central line that will be hooked back up to Shithead (her pet name for her IV pole). She will be admitted that day as well. She will begin induction next week. This is when she receives high doses of chemo. Mel will receive these treatments for 6 weeks, and will remain in either the hospital, or the Salt Lake area during this time. If she receives any radiation, it will be localized and not the full body radiation she had last time. The doctors are also looking for another stem cell donor. Her first donor has already said that he would be happy to donate again, in fact, there are still more cells of his at the hospital. The doctors told Mel that they will have to try a new donor's cells this time.

My mom will stay by Mel's side like last time. The plan is to have Kaden stay with our dad and visit Mel on the weekends.

When Angie and I talked today, we commented on how it feels like we were just barely here...updating the blog. I have to remind myself that Mel has had 2 awesome years of good health thanks to her first stem cell donor. We have had lots of fun times over these last two years. Blessings!

Melanie would like you to check the blog for information, Angie and I will update it as often as we can (hopefully daily). Visitors are allowed at the LDS Hospital as long as you are healthy :). Melanie loves to get cards and LOVES your prayers. Flowers are not allowed in the bone marrow unit.

Thanks for all of the concern and love for Mel. She is amazing to all of us. We as a family believe in miracles, and the power of prayer and fasting. We have faith in our savior, Jesus Christ. Whatever the outcome is, we believe it is part of our Heavenly Father's plan for Melanie.


GO, FIGHT, WIN Melly-elly!

The Picture On My Wall

I get a kick out of seeing people look at this picture that is on my living room/kitchen wall. Most people think it is a picture of the Savior with a baby. Well, that "baby" is me. I don't know if my cousin Jen realizes just how special and important this picture is to me. Jen drew the picture and brought it to me at a time when I really, really needed it. We had many laughs the day she and some of my other wonderful family brought the picture and visited when I was living with Angie. The stares from Jaden who didn't know what to think of my bald head, the tantrums Addie threw, bonking of the heads, and many great laughs were wonderful and desperately needed at the time. Most of all, I was feeling a deep sense of gratitude for a family who was aware of my needs; and, I believe, a cousin who listened to the Spirit and brought me a true treasure.

Jen used this photograph as the basis of her drawing. My mom took this picture when I was waiting to go have a lumbar puncture. It was a moment filled with anxiety and fear. The lumbar puncture process was very rough for me. Before and during each procedure I would hold my worry rock given to me by Kaden, my faith rock given to me by the Gladwins, and my Diamondbacks dog tag given to me by the Providence D-Backs team. Doing so helped me control my anxiety, focus my thoughts, and find comfort. How fitting for Jen to use this picture as the "model" for her drawing.

While some may think it odd, I made a very conscious decision to enlarge Jen's drawing and hang it in a very prominent place in my condo. You see, I believe it is extremely important for me to always remember the lessons learned while battling leukemia. This picture serves as a reminder of my experience. Most of all, this picture serves as a reminder of the never-ending love my Savior has for me. It serves as a reminder that my Savior was with me and helping me in my darkest hours. It serves as a reminder that my Savior will succor me in my times of need. What blessings!

Today marks the two-year anniversary of my diagnosis. So much has happened since. Lately, my thoughts seem to center on wanting my life back:  wanting my job back, my strength back, my energy back, my body back, my memory back, my mental sharpness back. Yes, I could go on. Yet, I wouldn't want to change my experience.

My perspective is different. My perception is different. My understanding of life and others is different. I know there are very loving and generous people all around me. I know, through the examples of others, what it means to serve. I know the power of the priesthood. I know the power of prayer. I know the power of fasting. I know the power of many praying and fasting for one. I know the feeling of comfort from a higher power. I better understand many things. So many lessons learned!

More than anything, I have learned what an amazing family and what amazing friends I have. I have had so many angels surrounding me. What a blessing!

Yes, I do want my life back, but I am learning to embrace the life I have and to enjoy the blessing of being alive.

Much love,
Melanie

My Health

It's been so long since I did an update on my health that I don't know where to start. When I went to my 1-year-from-transplant doctor appointment, a plan for the coming year was laid out for me: labs drawn each month, going to LDS Hospital for a clinic visit every 3 months, and bone-marrow biopsies every 3 months. The risk for a relapse is high within the first 2 years of remission. For this reason, Dr. Peterson (primarily) and my other doctors agreed that doing regular biopsies would help them monitor my progress and possibly find problems before they became full-blown leukemia or something else. The plan has stayed the same for my labs, and my labs have been looking great! My numbers still fluctuate a little, but nothing that has concerned my doctors. I had my biopsy in May as planned. Recovery was long!

Usually, after a biopsy I am sore at the site for a couple of days and then notice the bruise for a couple of weeks. Nothing too bad. After my biopsy in May I had a lot of pain. My recovery was not the usual! Worse than the pain was the numbness. My left butt cheek (never one to mince words) was numb for about a month; additionally, I couldn't sit for more than 5 minutes without pain and numbness. Over time the pain has subsided and the numbness has gotten better, but both are still an issue. When my coordinator, LaDee, called to schedule my biopsy for August, I told her about the issues I had after my May biopsy. She discussed the sitution with my doctors and PA's at "tumor board" (a weekly meeting where all medical people at the clinic discuss the patients) and it was decided that my biopsies would not continue as planned. There is not data stating that doing a biopsy every 3 months will "catch" a relapse before it hits full force. I could have a clear biopsy one week and a week later have acute leukemia. Dr. Peterson still wants the biopsies done, but he, and my other doctors agree that the problems the biopsies cause are not worth the "possible" rewards. I hope that all made sense. I am fine with not having biopsies. We just don't mesh!!!

My thyroid is still an issue. I was going to a doctor in Salt Lake, but was not too impressed with him. So, I decided to go to Dr. Wood here in town. I meet with him next week. I know my TSH and FreeT4 are off (for those of you familiar with those labs) and that my meds will have to be adjusted. I do feel a lot better than I did early this year. I am in awe of how much your thyroid controls/affects. When my thyroid was waaayyy low: my hands hurts so bad that I couldn't stand to open and close them, my legs ached, my skin was so dry (especially my face and eyes), my hair was falling out, my eyelashes fell out, and I had absolutely NO energy. This is what my eyes looked like when my TSH was so low:

This picture doesn't do it justice; my eyelids were so red and hurt so bad! I think everyone thought I was crying all the time. No matter where I was or who I saw (other than my family) I was asked, "are you okay?"

I am feeling sooooo much better now!!! I know that I will feel even better when my thyroid is completely regulated (that will happen, won't it?).

The biggest issue I am dealing with is my muscle atrophy/hip/scar tissue/back/??? problems. I discussed these issues at length with Dr. Hoda and LaDee at my appointment in August. This was the breakdown:

1. I have had 13 bone-marrow biopsies in the same location. Can you say scar tissue.?. My biopsy in May was the last straw.

2. I gained so much weight so fast that my back is not happy. Bless Dr. Hoda's heart. He told me that it is not my fault that I gained so much weight - that when your thyroid quits working you have no control. I accept his explanation for the most part; however, I think I probably ate too much pumpkin chocolate chip bread. The remedy for this is to get my thyroid under control and to get my fanny in gear.

3. My nerves have been damaged from the biopsies and lumbar punctures. So, I had an MRI the same day as my appointment in August. The purpose of the MRI was to find out if there was anything visible, like a mass, affecting my nerves. I followed up with a neurologist. He was a quack! Honestly one of the most bizarre appointments I have ever had. Nothing was determined, but I did learn a little bit about looking for a coincidence and doctors not wanting to be sued.

4. Remember my hematoma:

I remember it so well! Another picture that just doesn't do "it" justice. The pain was unbearable. So much so that I went back into the hospital for pain control. I used a walker for awhile and luckily still have it. I have used it a couple of times since May. This particular experience left my left leg much weaker than my right and seems to be all tied up with my nerve issues.

What to do about this muscle/hip/scar tissue/back thing? I don't really know, but I think I am on the right course. I am doing physical therapy, massage, chiropractor, and trying to get stronger. My balance is off, my endurance is poor, my muscles are weak, stairs are still difficult - but, I do recognize that all of these things are better than they were. I have to remind myself that it wasn't too long ago that I could not get out of the bathtub by myself, I could not skip, and I could not get both feet off the ground to jump. I am thinking that numbness is going to be my friend for quite some time. Hopefully, the pain and burning from the numbness will decrease over time.

There you have it! My health is better than it was. Leukemia is still in remission. It's just a matter of dealing with and working through the residual effects from my treatments.

Much love,

Mel

Kaden

Last school year, Kaden had to do a project for the school's history fair. He chose to do his project on Jackie Robinson and how he changed the face of baseball. He initially wanted to cover his entire board with baseballs that were cut in half. I explained to him that I thought it was a great/creative idea, but that doing so would cost $90. So, he found all the balls he could (15) and my friend Dave cut them in half for him. The final product wasn't what Kaden envisioned, but he seemed to be pleased. I think Kaden did an outstanding job. His teacher must have too - his grade was 200/200.

I can't believe Kaden will be starting 9th grade next week. Today at registration Kaden told one of the secretaries that he is not excited for school to start. I am excited and anxious. Sixth, seventh, and eight grades were a little rough. I know this year is going to be much better! I am hoping that Kaden's desire to play baseball will be a great motivator for being at school and getting assignments turned in. I am really looking forward to having a school routine going again.

Over the last few months a few exciting things happened:

Kaden decided to tackle shaving without any help from his grandpa or uncles. These pics are from his first time shaving his face.

We had a great time on Mother's Day.

Kaden played his last season of city-league baseball. He was fortunate enough to have John Lee as his coach for the last 5 seasons. His Grandpa Balls and Uncle Mike were his coaches a couple of times too.

Kaden's pitching form improved a lot this year. He did a great job pitching and playing 3rd base. Still, his favorite position is 1st base. He got to play it twice this season, and both time he went out with a huge grin on his face. John is a wise coach and was focused on helping Kaden become a more versatile player.

Batting was good. Kaden was frustrated a lot because he kept getting shallow hits, but he always moved the runners. He had some great hits when they were needed.

Can you find Kaden in this picture? He is the one in the SF Giants hat. I didn't realize he switched hats until everyone was done taking pictures. Kaden has played ball with many of these boys since he started with t-ball. A few of his buddies decided not to play this year. Kaden was bummed about their not playing. I just like that he has had such a great group of boys to play baseball with for so many years.

Kaden played Legion ball with the SV Bobcats for his first time. It was an interesting experience. A coaching change was made just before Legion began, so it was not very organized. Kaden did get some good experience and got to know the boys he will be playing ball with over the next few years. Daniel Lee is shortstop in these pictures. Kaden has played ball with him since t-ball.

Kaden was nailed in the foot when at bat one game. I was impressed that he shook it off and kept going. The first picture was taken when we got home after the game. You can see the thread marks from the ball. The second picture was taken after the swelling went down.

My family had a lot of fun making fun of Kaden and his major farmer's tan.

Kaden and I went to Bear Lake with Stefanie, Taylie, and Lindsey a few weeks ago. Kaden changed from a vanilla/chocolate twist . . .

. . . to neapolitan. I think he will listen to me next time I tell him to put on sunscreen. Especially when at Bear Lake. He had a great time while we were at the lake. It wasn't until we were driving home that he started hurting. Thank heavens for ibuprofen!!!

Kaden and I went to our first ReAL game of the season. One Republic was supposed to perform after the game, but ended out rescheduling. We were not amused. We had fun regardless. Our seats were on the front row. We had a great view of this bald man.

Fabian Espindola is one of my favorite players to watch. He is fast, risky, and just awesome!

Then there is my man, Andy Williams.

Now for my favorite man of all.

That's all the blogging I can handle for now. I have more to blog about: family ReAL game, Bear Lake, Colorado, doctors, randomness.

Much love,

Mel