Melanie's Battle Goes On

Hi everyone! Sorry it has been so long since we've updated. Melanie is still hanging in there. Each day seem to present itself with challenges and frustrations. Melanie is currently home!! It is a blessing for her, and right where she wants to be. She was able to go watch Kaden play baseball on Saturday.

Tate, Kim (she's here for a week), Mel, Dad.

Melly.

Here's an update on Mel's health.

Blood Levels: Everything is up and Mel's body is producing platelets and blood on its own. Her neutrophils and white count is great too. This is nice because she hasn't needed to have any transfusions.

Donor Cells: Melanie is currently at 100% donor cells!!!! This is great news. The stem cell transplant was a success. 

Graph vs. Host Disease: The doctors have always told us that you want to see some graph vs. host because then you know the transplant worked. Mel didn't have any symptoms last time. Not so lucky this time. Graph vs. host disease happens when the donor cells attack part of the host's body. It is manifested in one of three body systems. 1. The gastrointestinal tract. 2. The liver  3. The skin. Melanie's is manifesting in her skin. She has a horrible rash that itches and burns all over her body including her face and finger tips. It is aggravated by heat, and just plain old hurts. Mel is growing very weary of itching all of the time and feels limited by what she can do. She had a skin biopsy last week to confirm that it is graph vs. host disease. She is using a cream and has started taking prednisone to see if it can alleviated her rash. The doctors told her that this is easier to treat then the other two (liver, or gastrointestinal). 

Tacro: Mel is back on Tacro which is an immunosuppressant drug. She is on it to stun her T-cells so they don't attack the donor cells. This medicine causes her to shake. I'm not sure how long she'll have to be on it.

Throat sores: Mel has sores down her throat. She is taking a medicine to help with it. It is uncomfortable and makes eating certain things hard.

Being alive: Mel is alive!!!! We are so happy and grateful. She continues to be a miracle. She continues to fight and still smiles. 

We love you Mel!!

Update

We had a little get together at Greg's house to celebrate my dad's birthday.  My mom and Charise made some yummy dinner and cake.  I thought it was time to give an update on Melanie.

Her hair is still falling out.  It is pretty patchy right now.  Here she is showing some of the balding spots.  My dad brought down all of her hats this weekend.

On Saturday, Melanie was able to attend some of Kaden's baseball games.  He was playing in Bountiful, so it was not far away.  It was nice for her to be able to cheer him on!



Melanie is still doing the Levenox shots for her blood clot (which is healing nicely).  The shots are reeking havoc on her stomach.  Her stomach is swollen, bruised, and extremely sore right now.  It is hard for her to get around.  We use our stomach muscles for quite a bit!  Originally, they wanted her to do the shots for 6 months!  After seeing her lovely hematoma on her stomach, they have shortened it to 6 weeks.  She still has 3 more to go!  She is running out of areas to put the shot.  Poor girl!



I think they were trying to figure out how many bodies they could fit on one mattress.  We could hear them laughing upstairs!

A Happy Birthday to Grandpa and Brooke!

Melanie wanted me to let people know that she is doing great.  Other than her stomach, things are going well.  Her counts are starting to come up, which means the cells are ingrafting!  Now she just wants to be able to go home!

Thank you all for your continued prayers for Melanie. 

Friday the 13th

To Melanie, today was a fitting day for the title of Friday the 13th.  Today is the day her hair finally started to come out.  We thought she was going to keep it some how this time around.  However, that is not to be the case.  Hopefully, I will have some pictures to put on soon.

Melanie has been doing pretty good otherwise.  She still battles nausea and tiredness.  She goes to the hospital on Monday and Wednesday for labs.  On Friday she has labs drawn and has a clinic visit.  She has not been drinking enough water these days, so she is going to start having some fluids through her central line.

Melanie is beautiful bald, so all is good!

Happy 3rd B-day

Sorry we haven't been on to blog much. I know people are wondering how Melanie is doing. She is hanging in there. She is now at the point where she is just waiting for those little stem cells to do their job and take over. Her nurse Tony puts it like this. The stem cells right now are like drunkards just bumping around not knowing what to do. Once her counts are down enough, they will be like "oh, that's what I need to do" and take over. That is the HOPE!! :) Right now she is just really tired and fighting nausea. She just feels BLAH. But, this is to be expected until the cells do their job and her counts can start coming back up.

Here we all are celebrating Mel's b-day. Charise, Mom, Greg, Kaden, Mike, Kim, Melanie, & Dad.

Kaden has the nice touch for getting Makayla to go to sleep. :) Too cute!

Happy 3rd B-day Melly!! Not many of us get 3 birth dates: 9/13/77, 2/6/10, & 3/30/12. Hoping that the 3rd birth date is the charm. We love you!

We thank you for your continued prayers and support. It means the world to us! We will keep everyone posted as often as we can.

A New Immune System for Mel

Sorry to keep you all hanging. It has been a busy weekend!! Melanie made it through her two days of radiation and her transplant. YAY! Here are some pictures of her radiation adventures.

There was a lot of waiting involved!

Getting her new central line.

This is how Melanie had to stand for 20 min. while getting the radiation. Fun!



Ringing the bell to signal that she is done with her radiation! She was super happy that it was not as bad as last time, and that they were able to give her the meds she needed.

The stem cells have arrived. It's hard to believe that they came from so far away. In a year, we can find out just how far that was.

This time they looked like strawberry puree. It looks more red in the picture. There are 6.4 million cells in this bag. Melanie had to be pre-medicated for a few things before they gave her the cells. First, her and the donor were not RH compatible, so she had to have a medicine for that. Last time she had a few little problems (nausea and redness), so they gave her some Adavan and Benedryl for that. She was drugged!



I picked Kim up from the airport and we made it just in time for the transplant. It was a small group this time. Just Melanie, Mom, Kim, and I. That was good, because the room she was in was super small. We left the balloons and birthday supplies for another day.



Tony was the nurse helping her. He has worked with her a lot over the years. He is so funny and kind. We love Tony!



We were all giving a little chant as the cells made their way into Melanie's body. Her third birthday is March 30th at 3:27 pm. Melanie was nervous for this procedure. As the cells started going in, she started acting a little freaked out like last time. She kept saying that she felt weird and didn't like the way she was feeling. Tony explained that it does have a warm feeling as the cells go in. It joked that it was Melanie's body warmly welcoming the new cells. It probably didn't help that she had all those drugs in her and just had radiation. She was a bit nauseous as well.



It took 45 min. to empty the bag. We are so grateful once again for the wonderful man that donated these cells. We are keeping our fingers crossed that these little guys do the job. After the cells were all drained, she started to relax a bit. I think the drugs finally kicked in and she was able to sleep. We had to stay for about an hour and have her vitals checked every 20 min. Tony gave the OK, and Melanie was cleared to leave the hospital with a brand spanking new immune system.



If only we could get her to wake up now. She was drugged!

A Better Day

Today was a little better for Melanie.  As she put it, "I didn't puke."  She sounded pretty tired when I spoke with her.  She said it was a long day full of waiting.  She has her new central line in and it is feeling pretty good.  Sore, but not painful. 

Tomorrow is a day that Melanie has not been looking forward to.  Ever since she has known about the second transplant, she has dreaded radiation.  It made her so sick last time!  She is going to arrive early to get plenty of anti nausea medicine in her system.  She said she is just trying not to think about it.

Good luck, Melanie!  We will all be praying for you!

Clot Troubles

They removed the source of Mel's blood clot. It looks so sore. She had one put in on the left side, so now she'll have symmetrical scars. The doctors are still being cautious about the clot and have restricted Mel on lifting. We are really grateful that the clot was discovered.

A Hard Day

Over these few years, we have seen that their are ups and downs, highs and lows.  Today was a low day for Melanie.  I spoke with her this evening and she was very emotional.  It all started this morning with that darn nausea returning.  She also started with another rash.  Both items are most likely side effects of the chemo.  She was just not feeling very good today.  Another complaint Melanie has had for about a week now, is a pain in her neck.  It was very bothersome to her.  She mentioned it a few times to different people.  She was particularly worried going into radiation.  She has to stand in the perfect position during radiation.  She was worried, because she could not stand and hold her head just so, without major pain.  She was also starting to have pain when she swallowed.  She mentioned to me, with great emotion, that she has been praying so hard that they could figure out what this pain is.

Well, today, the right people had a listening ear.  They discovered, via ultrasound, that she has a blood clot near her central line.  Thank goodness they figured this out!  So, Melanie had to have her central line removed today.  She was worried that doing so would release the clot, but they had several opinions and explained that all would be well, and the central line had to come out.

When I spoke with Melanie, she said it is already feeling so much better.  They wanted to just put a picc line in, but since she has such a hard time with tape and her sensitive skin, they are going to be putting in a new central line.  This line will obviously be on the other side of her body.  Not a fun process to have to go through again.  She has to have a line in, in order to get her chemo, meds, and the transplant.  Now she will get to give herself two shots daily in her abdomen for about 6 months.  I am terrible remembering the names of all the drugs, but it is the one that helps with blood clots (Levo -something or other).  She also had to stay upright until this evening (no naps or laying down).

Melanie is so grateful for an answer to a sincere prayer.  They gave her some Benedryl for the rash, and some medicine for the nausea.  Hopefully, tomorrow will be a better day.

Thank you for all of your prayers.  Melanie is still in great need of them.

Back in Salt Lake

We had our family meeting on Thursday.  We learned that Melanie's donor is a 31 year old male.  He has lived in Europe for 5 years or longer (Maybe his whole life?).  Melanie and my mom headed back to Salt Lake today.  Melanie starts her three days of the chemo fludarabine today.  On Thursday, she will have full body radiation.  Melanie is mostly worried about the radiation.  It made her so sick last time!  They talked about all the precautions they are taking this time around.  Hopefully they can prevent any of her previous side effects.  On Friday, she will have another dose of full body radiation, and her transplant.  I put the wrong date on an earlier post!  All of this will be done outpatient. 

Family Meeting

We had Kim and Mike on speaker phone.

Mom and Dad

Sisters

We will get one with Kim on Friday!

Austin sat so quietly in the corner playing a game during the whole meeting!

Dr. Hoda told Melanie to plan on staying in Salt Lake through the month of April.  She will have to have labs drawn every Monday and Wednesday, and a clinic visit every Friday.  Melanie said, "We will see if I am here the entire month."  Dr. Hoda's response was, "You may be here for two."  We all got a laugh!

Melanie, Dr. Hoda, and Ladee

Melanie remains optimistic that she will be able to do all of this outpatient, and not have to be admitted.  She has great faith that everything is going to go well.  Regardless, she knows whatever happens is Heavenly Father's plan.

So, for now, mom and Melanie will be staying with Greg and Charise and making their daily trips to the hospital.  Friday will be the big transplant day (birthday number 3)!  Kim is flying in on Friday to stay for a week.  We will have another great birthday party! 

Go, Fight, Win, Mel!!

Update

I thought I would get on here and give a little update.  Melanie has completed her first 7 days of spot radiation.  She has been doing well.  My mom told me today that she thinks it is starting to catch up with her a little bit.  She has been more tired.  Melanie has been very impressed with the radiology department in Logan, as well as McKay-Dee in Ogden.  She will have treatment every morning this week, and then she will be done with this phase.

Thursday, we will be having a family meeting at LDS with Dr. Hoda.  This will be to go over expectations for her transplant.  Melanie and my mom will head back down to Salt Lake on Monday the 26th for Melanie's pre-transplant protocol.  This will consist of 3 days of chemo, two days of full body radiation, and then her transplant on March 31st.  All of this will be done outpatient.  This means they will get to stay with Greg and not have to be in the hospital.  If all goes well, she will not have to go back into the hospital at all.  We are praying for things to go smoothly.

Thank you for your continued prayers.  Melanie has accomplished so much, but there is still a battle ahead.  She has such great faith and determination.  I will post more on Thursday, after our family meeting.

Love to you all!

First Day of Radiation

Today, Melanie had her first dose of spot radiation in Logan.  I wish I had pictures to add.  My mom said everything went well.  She will see more side effects as the treatments continue.  However, the tech mentioned that this should be a breeze compared to her full body radiation she had last time.  Hopefully that is true.  She will have another treatment tomorrow, then every day for the next two weeks (Monday-Friday). 

Melanie is also heading down to Salt Lake to have her central line flushed out, and to watch Kaden's first baseball game of the season.  It is so nice that she can be home right now! 

Home Sweet Home

Sorry for the slack on the blog.  After Melanie and my mom took Kim to the airport on Friday, they headed to the hospital to have Mel's labs drawn.  If her counts were good enough, she was going to be able to go home.  Her counts were great, and she didn't need any transfusions.  Melanie and my mom headed home!!

So, Melanie will be home for a couple of weeks.  During that time, she will be having her spot radiation done in Logan and a few things done in Ogden.  She will have to head back down to Salt Lake in a few weeks to start her pre-transplant regimen.

She is feeling great.  Gets tired easily, but is just happy to be home and being a mom.  We will probably not be doing a daily update right now.  After Mel starts radiation, we will let everyone know how that is going.  We will also keep everyone up on when she heads back to Salt Lake and when her transplant will be (probably last week in March).

Thank you again for all the prayers. Melanie made it through a tough part of treatment, but there is still more to come.  Enjoy home life again, Melanie!



A Hospital Break!

Melanie was finally able to leave the hospital yesterday. We are now at Greg's. Yahoo for Mel & Mom!! :) I know this will be a boost to her. Her counts seem to be staying steady. She will need to go back to the hospital on Friday to get her counts checked again. If they are okay, she may be able to go home to Cache Valley for the weekend or more. All depends on her counts. Below are a few pics of being out!

Melanie and one of her favorite little angels Makayla. Her and Mel have some cute conversations. :)

Mel and I (Kim)

Charise and mom feeding Makayla cereal. This is a good adventure....she is just starting to eat cereal. haha Hilarious!

:) Sweet Makayla

We continue to be thankful for everyone's prayers. Melanie is battling hard and trying to get ready for the next phase. We will keep you all posted to what will be happening next. Leukemia is definitely a day to day thing. Thanks to you all!

Have a great night of sleep without interuptions Melly! Love you!

Laughter is The Best Medicine

Melanie's counts are coming up nicely. In part to Neupogen shots that boost white cell growth, in turn this boosts up neutrophils. Melanie also believes it has to do with all the fasting and prayers from all her friends and family! Thanks so much to you all.

My mom alwys put quotes on her closet door. This is the one on there now. I really like this quote a lot. It shows how much positivity Melanie has through all of this to a tee! :) She is amazing!

Melanie had a lot of visitors this weekend. Mostly family. (Cami has some pics that she will post). We had a lot of good laughs! Her friend Carmen came by on Saturday and was able to have a good visit. She even gave Mel a pedicure. :) So very sweet, Carmen. Thank you.

Carmen....Thanks!

Melanie's nausea had finally subsided a bit along with her fevers being gone. She really wanted some Doritos. This was a very good sign!

Melanie was able to have some good Kaden time this weekend. They both needed it. We all went to watch Chase's basketball game and gave them some time alone.

We were all able to have some good laughs this weekend. Laughter has been a much needed thing after the fevers had been there so long. You will have to ask Mel about 2 degree milk... ;) Anyway, thanks again for everyones support, prayers, & love for Melanie and our family through this tough time. Melanie seems to be feeling a lot better. She should be able to go to Greg's tomorrow for sure. But she really wants to get out of here today! I can't say as I blame her. She will be having some spot radiation in the next couple weeks. Then it will be getting ready for her transplant. We will keep you all posted to the next process of her treatment.

Love you Melly!! Your faith and courage continue to amaze me! :)

Fever Free

Today, Melanie was free of fevers!  YES!!!  Melanie told me, "The fasting WILL help", and it did.  It was a pretty great day for her.  The only down side of the day was this evening.  She was pretty sick to her stomach.  Kim said they are thinking maybe her Jimmy Johns sandwich did not agree with her.  She hasn't been eating very many solids lately, so it may have been a big jump, too soon.  

Austin played hooky from school, and he and I were able to go up and spend some time with aunt Kim and aunt Melanie.  We had a good visit!

Austin was a little reluctant, but he decided to help Melanie spike her hair , after her shower.  Having the energy to get up and take a shower was a great way to start her day. 

We told Austin that now her hair looks a lot like his.  Speaking of hair, Melanie still has hers!  Not sure if it will stay or what is going on.  We were told and expecting it to come out from the chemo.  Last time, it starting coming out about 2 weeks after chemo.  It has been about three weeks, almost four!  Maybe she will not loose it this time around.  We will see. 

Kim headed to Greg's for a nice shower, and Austin and I stayed to keep Melanie company.

Melanie was able to get up and walk today.  It was a little less forced, and she made it three times around the circle!  Austin wrote her another message on the board.  It said, "I love Mel."  He was excited for her to see it while walking.

He was a big helper to push shithead around for a second.  It was great to see Melanie up and walking so well!

Melanie and Austin used to like playing DS together when she was staying with us a few years ago.  Austin was happy to have aunt Melanie play with him again.  After a bit, they had to stop.  The nurse had given Mel some Adevan for her nausea, and she was feeling pretty tired.

Kim made it back in time for some lunch.  We are glad Kim is still here with us for another week.  She is a great sister and aunt!

Melanie had to head to get her new tattoos for radiation today.  Probably starting next week sometime, she will have 8 days of spot radiation.  They will just focus it on the area of her breast where the lump was.  She was not excited to head to the first floor again.  She said it was alright, because she new they were not actually going to be giving her radiation today. 

Kim's work, Pearl Izumi, sent Melanie a gift.  So very kind of them.  It is also wonderful that they allow Kim to take some time off to spend here with Melanie.

Today was such a great day.  We had a fun visit and it was wonderful to see Melanie feeling so much better!

We know a bit more about things to come.  They have found a donor for Melanie!  Ladee said she proposed that they harvest the donor cells on March 21st and 22nd.  If the donor, and hospital that will harvest, agree, Melanie will start the transplant protocol on March 19th.  We should know for certain on Monday if this is the case.  The transplant protocol consists of three days of Fluderabine (chemo), and one day of full body radiation.  This will get her body down enough to accept the donor cells.  Now we just need Melanie's counts to keep coming up.  She had to have platelets today, but everything else was up a bit.  If it just keeps climbing, she will be able to leave the hospital, which would be great. 

We are so grateful for the outpouring of love and support from all our family and friends.  Melanie is especially grateful for a day free of fevers!   

Thanks for the Fast Everyone

First off, thanks to all that were able to fast today For The Love Of Mel. It is so appreciated. We feel so blessed to have so many people who care about Melanie and our family.

Some of Mel's counts came up a bit, which could really be the positive sign we have been looking for. Her white cell count is now .4 (they have been .2) and neutrophils are .1 (she has been at 0 for days now)!! Yahoo! These are the 2 counts that Mel really needs to come up. It may not be a lot but she are taking all she can get.

Melanie has continued to have fevers. Last night was another rough one and pretty much all day today. The Infectious Disease group had a couple nurses come in to see if they could help pin point what may be causing the fevers. The cultures they have done have all come back negative. Which is good, but want to stay on top of it. They did some blood tests, CT scans of her chest and head, and also a sinus type flush. They are just trying to rule out everything they can. It is most likely that because her counts are so low, this is causing the fevers. So come on white cells & Neutrophils!!

Thanks again so much for everyone's thoughts & prayers. Melanie feels so thankful everyday as do we.

Sweet dreams my dear sister. I hope you get some much needed sleep tonight. Love you tons!!

Same thing, different day

Well, not much has really changed again today. We thought she might get lucky until about 5:00 when another fever hit. So, we are still on the same fever, nausea, frustrated ride. We will keep praying that things start to go up. One of her doctors this morning did say that her monocyte count (my understanding is that monocytes become neutrophils) did go up a little. So this may be a sign of good things. We are sooooo hoping it is.

She did FORCE herself again to get up for a walk today. And Jamba Juice seems to really be her friend the last couple days. It is at least something that has been going down easier for her. She is just trying to hang in there and do all she can. She did talk to Kaden tonight which always seems to help her spirits.

Remember for those of you who would like, there is a fast tomorrow For The Love Of Mel. I know Melanie has a true faith in the power of prayer and fasting. So thanks for all the prayers and fasting for Mel's counts to come up and her fevers to subside.

I love you Mel! And I am amazed everyday at your strength and courage.

Fasting for Melanie

I am always glad when I can go up to the hospital and visit.  Today was an extra treat, because I got to see Kim!  When I arrived, Melanie was not feeling too good.  Kim said she had a fever most of the night and they did not get much sleep.  Melanie looked really tired!  Kim and I decided to sneak out and let her get some rest.

I took Kim to Greg's house so she could have a shower and feel a little human again.  We stopped for some non-hospital food as well.  Melanie has not been eating very good the last few days, so we thought of trying to get her a Jamba Juice to see if that would taste good to her.

When we returned, Melanie had gotten a little sleep, but was interrupted quite frequently by medical staff.  To top it off, she was starting another fever.  I could sense how terrible she felt.  She also got a little teary eyed.  She needs a break from these fevers!

She was chilly and didn't want to take her arms out, so Kim helped her with her Jamba Juice.  They were able to give her Tylenol, so she was able to drink it all at some point.  That was a plus!  Dr. Asche said they may have to start calorie counts and feed her through IV, if she can't eat more.  We don't want that.  Jamba Juice may be seeing a daily visit.

I have to add that Kim was trying really hard to not make a sucking face like she did in the previous picture I took (she wouldn't allow me to post it).  We were all laughing! It was kind of like opening your mouth while feeding a baby.  She was puckering right along side Melanie!

As you can see, shithead is not empty anymore.  They started to give a few more of her drugs to her through IV, so she doesn't have to take so many pills.  Melanie does not do pills well, particularly when she is nauseous and not feeling good.  I left the hospital hoping that both Melanie and Kim were able to get a descent nap.

I spoke with Kim this evening, and she said Melanie did get up and FORCE herself to go for a walk.  She didn't make it as long as she used to, but she hasn't gone in a few days.  I am so glad she did it.  When they got back from the walk, she started with another fever.  I hope she can make it through the night without another one!

Melanie has asked me to organize a fast on her behalf.  She really needs a break from the fevers and needs her counts to come up.  This Thursday, February 23rd, we are asking anyone that wants to join us to fast "for the love of Mel".  We know the power of fasting and prayer.  Melanie has a testimony that it can and will help her.  Please pass the word around.  There is great power in numbers.

Thank you!!!