Thursday, November 26, 2015

Watching a barge on the Mississippi River.
I hate to post so often, but I just wanted to share some pictures, and a couple of things, and suggest a Thanksgiving activity for you. Eli seems to be doing well as far as his overall health goes. All of his lab work was good; just going to watch the hemoglobin, which was low, but he tends to be low; and he needs to drink more, which is normal for him, as well. He continues to eat decent, sleeps well, maintains “normal for him” energy, attitude and emotional levels. He is not showing any side affects, yet, and I was told the other three kids on the meds aren’t showing issues either. Of course, none of that has anything to do with fighting the cancer, but we continue our thanks for the protective hand of Eli’s Creator.

I met another new mom in the waiting room today, just briefly (new as in not relapse). She heard me talking about the incredible parents group on Facebook, and asked about it because she had wanted to
 make a connection with other parents. I can’t remember how far a long they were in treatment, her son is 4, but I think he only had one cycle left. Not having that social connection, or outlet, she was eagerly nervous to share her fears and curiosities as they approached the end of treatment. “Everything I read is just so scary (about relapse),” she said. “The doctor said that if it comes back there is nothing they can do.” I just sort of nodded my head in understanding, and sat and listened to her, but I was distracted with worry that she would ask about Eli. Everything she said was all so familiar, I could have quoted her from memory before she spoke. I purposefully did not share with her about Eli, and planned in
At the front of Graceland.
 my mind to be vague if she asked. It’s easy with him sitting beside me looking so awesome. When we went through the line at the Bass Pro Shop and got the St. Jude discount, the cashier smiled and said, “And, look at you. (turned to me) He must be in remission.” I just gave my head a little shake and said, “no.” It is frustrating to have been living with aggressive cancer for four years, and not be able to be an encouragement to anyone (people facing the same situation). I almost think that is just another twist in the devil’s handiwork because he knows how badly I want to fix or rescue. You’ve read where I have mentioned Baylee and her mom, Shellie. Shellie wrote me when I worried about
Part of his trophy room.
 relapse, before Baylee relapsed this time, and said, “All kids are different. They are made
Buried with his mom and dad on
either side, and his grandmother.
different, they react to treatment differently. You just can’t compare one kid to another.” So, that is always what I say now, if I end up having to share Eli’s story with someone in the boat behind me. We also got to see Chandler, and their news was that he is stable, and I think they were nervous about it, but “stable” is still a response, and this early in treatment for him, I think that is great. We also saw another little girl that we used to see at Target House, way back during initial treatment in 2012. She was here for routine scans, looked wonderfully adorable, and continues to be clear. They travel from California to be treated at
 St. Jude, and her dad, who was here with her during treatment is now studying to be a nurse. So, how cool is that.

Eli and I have enjoyed having Hg around. She is a chatterbox, but she is fun for the most part, and pretty low maintenance as far as where we go, what we eat…. as long as we do “go” and we do eat. I
The caddy that he bought his mama.
 wouldn’t say that Eli and she are super close, but he has enjoyed having her here to “connect” with on video games, and to watch movies with… even though she irritatingly quotes most of the lines, and sings all the songs. We are trying to break her of that before someone who doesn’t love her tries to break her of it. We visited Graceland Monday, which was really neat. I’m not necessarily an Elvis fan, but it was neat for the history of it, and was kind of surreal being in his actual home as it was when he lived there. Elvis had his vices, loved his bling, and fell victim to the music industry sirens, but there is no doubt that he also loved his family, loved his country, loved helping others, loved entertaining people, and believed in God. His home was a treat to visit. Eli and I have visited the car museum and toured
The kitchen.
 his jet before, but this was the first time we were able to go over to the mansion. Eli loves the pink Caddy that Elivs bought his mama. Yesterday, Eli had appointments, and we went to a mall. Today, I showed Hg Sun Studios where Elivs recorded his early music, then we walked some along the Mississippi River at Mud Island. After that, we took a trip over into Arkansas and went to a Wal-mart, and then north to Missouri and got gas, then came back to Memphis. Hg just wanted to say that she had been to those states, and I’m a road trip gal, so why not.The others will be here late tonight, so that we can have what will be a special Thanksgiving weekend for us.

Please, continue to remember Baylee. The hospice nurse thinks she might have a week. You may not know this, but Baylee was a good artist. Her hope and dream was to become a professional artist. I
What would now be called a media room.
 like making donations to libraries in lieu of flowers when someone passes, because it honors my dad, so I have a contact in Salt Lake City that will make a suggestion for a library at like an Art school or something like that where she lives. Please, don’t feel obligated, but if you would like to participate with me in honor of this young lady, you can send something to my paypal using the email address

I have a Thanksgiving activity for your family or church group or class get-together. One way to feel thankful is to think about others, so gather up some cards, and stamps, and bring the following list of addresses to your gathering (I will make a
Sun Studios where Elvis made his early recordings.
 copy/paste list at the end). Adults can write the text, and little kids can put on the stamps. If you could end each with “Friends of Eli the Eliminator”, and, also, be careful with your words to grieving moms. Do not write that you know how they feel, even if you do, or think that you do. Do not write that God needed their angel more than they did or we did, or that it was just their time to go, or anything like that. Think about what you write from all angles, using positive words with the focus on the reader, not yourself or your own experience. In some way, just write that you are thinking about them during the holiday season, and including them in your daily prayers for strength and comfort and peace.

Some of you that have followed Eli from the beginning will remember six-year-old Smilin’ Jack, a precious light that medullo took in early 2013. Jack was finishing treatment as we were in the middle
A rare moment while we wait for an appointment.
 of treatment in 2012. He and his mom are a bit special to me as they were the first to be especially welcoming and friendly to us in the medullo family world, so I wanted to share that Natasha lost her sister recently, and they were very close. I would love if you could send a card to Natasha.

You long-timers will also remember eight-year-old Ryan, who lived just a couple of miles from us, and was also taken by medullo in 2013. His mother, Jasmine, continues to struggle emotionally (as I imagine all do who lose a child), and is fighting some health issues of her own. I would love if she was flooded with cards to know that she
Just playing around.
 and her baby are remembered. I think that is the only thing a mother would really want is to know that her child is remembered.

Another couple of moms from the past is Maranda Martin who lost her son Bradyn to relapse, and Brittany Blake who lost her son Nolan to relapse. Brittany was one of the first relapse moms outside of St. Jude that I cybermet. I kept up with these two besties for a while, and watch their posts. They are understandably still hurting, but are both positive in their attitude and a great example for anyone facing adversities.

Gina Palmer is a mom who lost her son young Derick to relapse medullo and she channeled her grief into sewing special hooded towels to send to kids with cancer. Eli has one, and he loves it. I appreciate her example.

More recently, when Eli started the path to Houston we came to know who Zach Grisham was, and that he lived just one town over from us. The 21-year-old was taken by relapsed medullo earlier this
The new Bass Pro Shop near the hospital.
 year, and is remembered by his community as a strong Christian voice, and an encouragement to all. His mother Kathy continues her example of strength, and I know could use some encouraging words. Also, along that path to Houston, we met 17-year-old Drew, oddly, also from Alabama. He continues his fight at home after being dropped from the trial in Houston. His younger sister Kaitlin was very recently diagnosed with juvenile arthritis, so their family is going through a lot, and remains examples of strength and courage as they also stand at the mouth of the valley with their son.

Another mother who lost her baby just Wednesday is Nicole Skaro. Vito was two, and such a cutie, never was without a smile. He is forever healed of medullo. A young girl named Jordyn has been clear of medullo for a few years, I think, and was recently diagnosed with DIPG, which most of you will recognize as incurable and inoperable.

A couple of local kids that have relapsed in our town, I would love for you to send something to:17-year-old Leah Seibert, who is a wonderful example of grace and courage to all that know her, and to nine-year-old Sweet Emma Clark, who is fighting a second cancer, and must live in Memphis for treatment taking her and her mom away from home again for a lengthy time. She goes in tomorrow, on Thanksgiving to begin a bone marrow transplant, which is a harsh and lengthy procedure. Her mother is Katie.

Add 12-year-old Kennedy Estes who is fighting extreme lupus complications with chemo.  And others mentioned in previous posts, 15-year-old Chandler Howard; two-year-old Townes Querin; and less than two years old, I think, Quin Merryman.

If you include gift cards, my preference is that you include gas cards from Texaco, Shell or Exxon. Thank you for taking part. There are many, many more, and some that are slipping my mind, but if you would like to post an address of a child in relapsed treatment or extreme medical treatment, or a grieving mom, and you know that the address is ok to publish publicly, then post it in the comments. Please, scroll the comments to see addresses from others to complete your list for this Thanksgiving activity.

Natasha Heming, 2450 Weems Road, Weems, VA 22576
Jasmine Davis, 15198 Mill Valley Drive, Athens, AL 35613.
Leah Seibert, 21198 Loggins Road, Athens AL 35614
Kennedy Estes, PO Box 6, Spring Grove, VA 2388
Chandler Howard (Patient), Target House, 101 N McLean Blvd, Memphis, TN 38104
Townes Querin (Patient), St. Jude, 262 Danny Thomas Pl, Memphis, TN 38105
Quin Merryman, 2400 Hackberry Lane, Birmingham, Al 35225
Baylee or her mom Shellie Bassett, 786 Enchanted Dr. Midvale, Ut 84047
Emma Clark (Patient), 101 N McLean Blvd, Memphis, TN 38104
Kathy Grisham, 1313 Castleman Avenue SW, Decatur, AL 35801
Drew Davidson, 127 Woodhaven Drive, Eastaboga, AL 36260
Nicole Skaro, PO Box 293, Waconia, MN 55387-0293
Maranda Martin,  5825 Austin Garner Road Sugar Hill, Ga 30518
Brittany Blake, 217 Brown acres rd Griffin, GA 30224
Gina Palmer, 1301 Stamford Dr., Virginia Beach, VA 23455

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