Saturday, January 4, 2014

After his first chemo day for relapse. check.

It’s been a good day. That’s my best lead hook for you tonight, and it has been. I was nervously afraid about Eli starting his chemo today because my only experience with chemo is the kind that sends his vitals into a tailspin, his tummy up the top, and his intestines out the bottom for days. I’ve only ever stood like a hawk over his bed as the poison is being infused straight into his life blood watching for fatal warning signs. I have been in painful disbelief that we were going to have to put him through that again. And, I still am, but the Lord took care of us today and we had a good day. Instead of packing for five days “in-patient” (which if you remember was never only 5 days), we just walked into the clinic and were put in a little private room, then walked out three hours later done. His port was accessed for the first time, which he was nervous about. He was so nervous about it that yesterday when they needed to draw blood, the nurse asked if he wanted her to access his port or if he wanted her to draw it from his arm. He chose his arm. If you’ve seen the video of him having blood drawn, you can see why he chooses that. He doesn’t flinch. But, today, he didn’t have the choice. The port that was surgically implanted lies just under the skin in his top left chest. It is round with a gel-like center that covers access to the catheter running into his artery. So, to “access” it a nurse pushes a needle through the skin and into the center to get to the mouth of the catheter to either draw blood or infuse meds. It is no more painful than being poked with a needle, but sometimes the meds going straight to that vein can be uncomfortable. He made a little nervous moan at me which in verbal language means “I’m not so sure about this….”. But, there is no digging for a vein, no blowing of the vein, just a straight poke and they are in. He got all three chemo drugs today. Two are infused over one and a half hours each, back to back. Then came the tricky one. It is in capsule form, and requires five to get the dosage. The last time I tried to make him swallow a pill he was 7, and on a feeding tube refusing to put even gum in his mouth. So, the nurse and I decided to open the capsules and put it in water then pull it up with a dosing syringe and squirt it in his mouth. This is how I did a couple of years ago because I tried mixing it in juice or applesauce, but he would have to drink and eat every last drop. He was not even eating a cookie at that time. I had tried just dumping the powder right on the spoonful, but it altered the taste of the applesauce so bad hat he would just spit it out. So, I would crush it in a tiny bit of water, then squirt it really hard toward the back of his throat. That is the only experience I had to draw from when we prepared to give him these capsules. Since this was a chemo drug, we had to use gloves and a mask if we were going to open the capsules with potential poison powder in the air. So, we prepared for all of that with the gloves, the masks, the syringe, the water, the mixing cup. We got ready to open one, and I said, “hey, Eli, why don’t just try to swallow one of these. It’s just like when you accidentally swallow your gum.” In his trademark low monotone he said, “umm..sure.” And, boom, he swallowed five straight capsules one after another. I’ve said it so many times, but he does what he’s asked. Such a good kid. Of course, this is the first day of five days, the first five days of what I hope to be years of swallowing pills, so it may get old quick and I will be saying “This kid is killing me, I can’t get him to do anything!” But, today, he has been so good, in such a great mood and so agreeable and playful. So far I can’t even tell he got any chemo today and if it stabilizes him here for even a few months, it will be a wonderful place for him to be. While in the Medicine Room, as it is called, we sat and watched SpongeBob and played his DSi while I did some catch-up work, then we left when he was done. I was hesitant to get too far after that since I didn’t know if maybe something would hit him suddenly. Would he get nauseated or mess his pants up, would his blood pressure drop or rise? I had no idea and didn’t want to get caught carrying him through the mall or something trying to get to the car quickly, so we have been hanging out watching SpongeBog AGAIN, doing laundry, and transforming transformers since lunch. He has also been so excited because Vic is coming tonight and bringing the others for the weekend. So, we have no appointments and only have to get down five pills each day. Since we have relaxed on the raw diet, I let him pick anything he wanted to have after the MRI results yesterday as long as he still got in his veggie juice and one of the avocado puddings. He was so excited and he didn’t even have to think about it. His number one favorite is Zaxby’s chicken. And, of course, they are only located in like the suburbs. So, it took us more than 30 minutes to drive to one, and I kept mumbling complaints and other options we passed (just in fun, I would have driven anywhere, didn’t really matter… I don’t mind using the gas and riding like my husband does). He would grin and say over and over “It’ll be worth it, Mama, I promise, it will be worth it.” It was, but not because of the chicken.
Getting his chemo on.
So, on to some “housecleaning”:  Now that we know what the plan is for at least the next two months (he will have an MRI around February 28 to see if the disease is stable. If it is not, things will change again), we can better organize. I get a good bit of beautiful messages asking or request similar things, like where to send cards, where to send money, what does Eli like, what does Eli need, what does Eli want, what can we do to help at home, with the kids, with Vic. Just such an outpouring of generosity is humbling, and I am so honored to be among a group of people, a family, so willing to pick up the flag of the fallen. I am learning and growing so much from your examples. My first instinct is to always say no to offers of help. I see first-hand some really destitute situations, and for us to have the overabundance offered when I feel that comparably we are figuratively stronger than these, it feels wrong. And, I am supposed to be the one rescuing, not to be rescued. So, I guess that is part of it, to accept means that I am in need and that puts me on the weak side. To be Frank, I don’t like that. But one day… one day, I will do something. I will do something big for someone, I just know that I will. So, with that promise to myself; with my desire that all of you feel a part of this fight (doing anything from offering prayers, which is my personal favorite, to offering meals or money), and thusly a part of the victory; and knowing that our time with Eli is shortened, I have agreed to some things that I did not the last time. Melissa - who I have tapped as our “manager” and for whom one day I will double… nay, triple what we pay her - and I have been trying to come up with an efficient way of utilizing your charitable efforts that is not wasteful of your generosity, be it financial or of time or of energy. And, please, do not be offended if we say we don’t need any help. We have more offers than we can fulfill, even if I had the kids change clothes three times in a day to generate more laundry, I could not create enough need for the amount of help offered. There are so many worthy causes and needs out there, please just direct your offer to another choice that will benefit more than if we were to create a need for ourselves. So, with that all out of the way: First, following is an address (that is on the home page of the blog) that can be used to send cards or packages or anything because we will not be at St. Jude very long. St. Jude will hold whatever comes if anyone has sent anything. But, a local business has agreed to let us use its address as our published address: The Grasshopper Children’s Boutique, Attn: Eli Williams, 107 S Marion St, Athens, AL 35611. Anything can be sent there any time, and we will get it.
New Year's Eve, waiting for his Daddy to come upstairs.
Secondly, I get such precious requests concerning Eli, so as far as things for Eli, first, let me say he NEEDS nothing, absolutely nothing. But, due to the grim prognosis this time, we do enjoy seeing him get a smile out of every minute of the day. So, per some requests for suggestions, I have allowed him to make a wish list on,, and since not everyone knows him well. This will keep it personal, cut down on duplications, and will cut down on someone spending money on something that he will not use or doesn’t need. Now, read this next part very carefully, and let it sink in: HE NEEDS NONE OF IT, if he gets nothing ever on these lists, we will be in good shape. But, some of you have asked what he would like, or what can your class or team get for him, so I have included a variety of things from big to little so that individuals or groups could have choices. These lists are not going anywhere, I will leave them up for how every long the websites will let me, so do not feel like you need to get anything, or anything right now off the lists. When you go to the site, search Eli the Eliminator at amazon; Eli Williams at toysrus, or Kristie Williams at walmart. I will add and take away as the season changes and to fit things that we are doing. It is killing me to create that, but I do so with the reasoning that it will facilitate efficiency and eliminate excess. I will make lists for the other kids as time permits.
Concentrating on what kind of Hot Wheels he found.
Ok, thirdly: With apprehension and a little jab at my pride, I have agreed to allow help with our laundry and with meals once to twice a week. Melissa is making those lists, or has links for that sign-up. After things are rolling good, I will likely put a stop to those two things. Fourthly, since it is 2:30 a.m., I’m just going to be blunt, some have asked about giving money. It does give us the most flexibility to do what we need and want. Vic is going to cut back on some of his hours to spend more time with Eli, and if you have been following us for very long you know that we were preparing our house for sale to try to avoid me getting a job. Even if I wanted it, I can’t get one now, don’t want one now. We are still going to be working toward selling the house but until we do, we want to enjoy our time with Eli by taking him places on vacation and just every day, and providing him with experiences that he enjoys. We want to keep the kids in their activities and in their school. We may want to make some changes in the house to accommodate Eli’s health challenges that will come down the road and to keep him happy and comfortable. Our main transportation is 13 years old at 240k. My plan is to reach 300k, but that is not far away with how often I burn up the roads, so that expense is coming (and I am going to be so sad, honestly, it is going to be painful because I love it and because of what Vic will put me in). We want to eliminate chores that are time thieves and spend it with Eli instead. But, if not one penny is put in the Eli Cancer Fund at Redstone Credit Union, we will not care (and will almost be relieved because, like I said earlier, it just feels weird). We will find a way to do the one big thing that really matters and that is spending time with Eli. But if you do decide that this is where you want to help, know that we want to be diligent stewards of those gifts and will use it ultimately toward Eli’s quality of family life. Ok… deep breath… that was all painful to my pride, but i know that information and organization will aid everyone with their hunger to help. Any effort made to help, big or small, will be effective, and it will be much easier for Melissa to direct people as she is approached. Please, know very plainly, that prayer is what our hearts most desire, and what satisfies our greatest need at this time. Thursday, as we waited for Eli to be called back to the MRI, an older couple sat with a double-stroller in front of them. The lady bounced a baby boy about five-months old or less on her knees while the man talked on the phone seemingly receiving some instructions. She talked so sweetly to the baby who just smiled slowly as he watched her mouth move. Soon, she got out a bottle and gave it to him, then walked around the waiting room, gently bouncing him. He seemed very happy and agreeable to what she was doing for him, yet she did not seem comfortable with him. Three hours later, I sat in the second waiting room waiting to be called back to sedation recovery. The couple was shaking hands with a young woman who was behind the stroller now with the baby in it asleep. Another child, wrapped in a familiar hospital blanket, sat with his or her head down in the front of the stroller. The couple was volunteers. The young mother did not have anyone to keep the baby as she was with what looked like a four-year-old for whatever procedure or treatment he or she was having. I’m not even sure that the mother spoke English as I the couple try to tell her how much they enjoyed the baby and how good he was. So, they gathered their things and left as she pushed the stroller the opposite way. If I were in the same situation, I could call 20 people in this town of which I do not live and have never lived beyond the time spent during Eli’s treatment, to help me. I am so thankful to be a member of God's family and I am not worthy of the blessings I see every day when I am here.

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