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

Ramblings

Rambling #1: Yes, everyone, we successfully moved to our condo! It took us a week (or more) to get moved but, hey, I didn't have any deadlines to meet. I am so grateful for my amazing family and friends who helped us move our stuff from my parent's house and my storage shed. There were times when I was sleeping and others were working. Thanks for the love! Kaden and I are both loving our new place. I'm sure I'll post some pictures eventually.

Rambling #2: Hooray!!! I know why I am still so tired all the time, why my muscles are so weak, why I've gained so much weight so darn fast, and a few other "whys." My thyroid is not working. Apparently, it's a common post-transplant issue. My radiation killed my thyroid. Plus, my vitamin D level is very low. Both issues can be taken care of with some nurturing, time, and meds. Patience will be required.

Rambling #3: My stem-cell donor has a name - Jordan. I do have his last name, phone number, and e-mail address, but that is all I know at the moment. Oh, and he is now 28 years old. I sent him an e-mail and hope to here back from him soon. My emotions are overwhelmingly full when I think about him and what he did for me. A definite tender mercy.

Rambling #4: Kaden will be playing with a super-league baseball team. I am beyond excited for him. He loves baseball! We are hoping he will be able to play with the city league too. There is no such thing as too much baseball. We love it!

Rambling #5: A lot of people ask me about my plans for teaching. I am not teaching at this time, but plan to go back next school year (2011-2012). I don't know that I will be teaching at Providence. I will teach where the District needs me and the grade the District needs me to teach. So exciting!

Much love,
Mel

An Update

I haven't posted on Mel's blog for awhile now. Mel wanted me to post about her last two visits to the LDS Hospital. On February 11th, Mel had her one year (since transplant) check up. She seemed so calm. I was so nervous for her. She had labs drawn, a chest x-ray, a respiratory work up, a bone scan, and a bone marrow biopsy. I told her how brave she was and she told me that you just do what you have to. I was able to watch the bone marrow biopsy and it was fascinating. They had Melanie pretty much out of it, thank goodness. It looks very painful. I asked the nurse if bones numb and she said that they don't. Here are some pics from the visit on Feb 11th.

*** Warning: If you are faint of heart, or don't like needles or the sight of blood...skip these pics.


Mel was really tired and did lots of waiting around for doctors and such. She was able to catch a little sleep before the biopsy.


Mom and I. There for support and encouragement.


The down side of having Mel's central line removed is the need for IVs and needle pokes. They tried to put the IV in her hand, but they collapsed a vein. This IV was really uncomfortable for Mel and was just in a bad spot.


Can you believe Mel is about to under go a bone marrow biopsy? Look at that smile! She is amazing! Peter is in the background. He is the only Dr. that Mel will allow to do her biopsies. He is so kind, patient, and knowledgeable. He is a very likeable guy.


First, they get Mel comfortable. She was in this position for quite a while. They used pillows and such to get her aligned just right. They prepped the spot on her hip/low back with iodine and injected lidocaine in what seemed like a dozen different spots. This was the only part that made me a bit woozy. It was a long needle !


Once she's numb, and the verset is in her system (anesthesia), Peter put this long needle about the thickness of a knitting needle into her back. The needle has to be into the bone in order for him to get the sample of her bone marrow. He took several tubes of fluid. Once that was done, he used a different instrument to get the bone sample. It is hard to explain how that works. It took a couple of tries, but he finally got a good sample. After they got the samples they needed, they applied ice and pressure to the injection site and had Mel lay down until the anesthesia wore off enough for her to walk.


A lab tech was present in the room during the biopsy. She put different amounts of fluid on these slides which will be analyzed.

We went to Greg's house for a few hours so Mel could sleep off her anesthesia. Charise made us a yummy dinner (thanks Charise) and then we headed back home.


The Results

Today, Mel had a meeting with Dr. Hoda and Ladee. We were really anxious to find out the results of her tests. Dr Hoda had a binder that contained all of the results. The news is beyond miraculous!! Mel's bone marrow is clear. No leukemia! The trans location is gone. This is where her chromosomes 4 and 11 switched places and mutated. Mel's blood levels look good. Her hematocrit is still a little low, but MUCH better. Her bone scanned looked fine, her respiratory function is great and a lot better than it was when last tested. Her percentage of donor cells went down . It appears that the donor cells did exactly what they were supposed to do, but the graft has failed. It isn't necessarily bad news given the rest of the report. We are forever grateful to her donor. Without his cells, Melanie wouldn't be with us today. Mel's iron is high due to all of the blood transfusions she's received. They will be doing a scan of her liver to make sure it isn't in danger. At some point they will have to do blood letting to get rid of the extra iron. They just drain blood from her, which her body will replace.

Because Mel's immune system was wiped out in preparation for the transplant, she started to receive her immunizations again today. She will be getting all of the vaccines that she received as an infant. Her arms were really sore from all of those shots. She got three in each arm. She mentioned that she knows how her kindergartner's felt now when they got all of their school shots.

Ladee talked with Mel about her donor. After a year, you can request information from them. Mel filled out a form and specified what info the donor can receive about her. I would love to meet her donor! Ladee said that she thinks he has already requested Mel's info. It will be exciting to know more about him.

Dr Hoda said that Mel will be at the biggest risk of relapse for the next year. We have faith that Mel will be fine. Melanie has tremendous faith to be healed, it is one of her gifts of the spirit. She is so optimistic!

It was fun to see the staff that cared for Mel on the 8th floor of LDS Hospital They are second to none! They had plenty of hugs and words of encouragement for Mel.

Ladee, Mel, Dr Hoda.

This has been such a journey! It has also been an incredible testimony builder for all of us. We as a family believe in miracles. We know the power of prayer and fasting. Thank you to all of those who have cared so much for Mel. I know that your kindness really lifted Mel's spirits in her darkest hour.

Valentine Time

We have done a fun activity for many occasions so far, we can't forget Valentine's Day. Our Valentine activity consisted of make cards for Aunt Kim and Aunt Joanie, and making sugar cookies. Cami helped by cutting out some large hearts for the event. The kids enjoyed putting their personal touch on a heart for Kim and Joanie.

Ethan (I love this picture)

Kaden (looking very happy)

Tate (choosing carefully)

Stephanie helping Taylie . . .

and Lindsey (our tornado can never be left out)

I love the process of making sugar cookies; especially when Kaden, my nieces, and my nephews can help. However, I decided that the Valentine cookies were going to be different. I bought the cookies from a bakery. I saved a lot of energy!

Eli was very creative and careful with his decorating.

Taylie just does whatever and licks her fingers a lot.

Tate wanted perfection, with some help from Aunt Mel he was satisfied.

Stephanie and I frosted and decorated most of the cookies.

Can't help but love this taterbug.

Kaden's Birthday

My boy is 14!!! Time sure does fly. I didn't even talk to Kaden before he went to school, so I was very excited when he walked through the door after school. He said he had a good day at school and that he was sung to several times. I am so blessed to have Kaden in my life. He is a super kid! He is very: loving, thoughtful, kind, witty, generous, good with his cousins, laid back, and on and on. Here are some photos from the afternoon/night.

Pass for four sessions to Hardball, a newer baseball facility in town.

Kaden and Uncle Mike trying to figure this one out. They didn't.

Kaden needs lessons on how to ride this thing. If you know how, please share your wisdom.

Kaden with Lindsey, Eli, and Tate.

Oh Tate, who knows what he was doing. Glad Eli, Cami, and Steph could join in the fun.

Lindsey and "bampa"

Mike and Kaden's guitar that really needs to be cleaned.

Kaden loves playing his guitar!

Tate and our white tornado, Lindsey.

Glad Uncle Andrew could make it.