Thursday, February 4, 2016

A print from one of Baylee's paintings.
It is interesting how small such a big world is, how clear a dark night can be, and how cold it can be in the sunshine. Eli started his palliative chemo on Tuesday, just a pill… a big pill, but still just a pill. He has swallowed pills fine for a couple of years now, after I told him it was like swallowing his gum. He is having good nights and days, but I imagine any side affects will be a cumulative result. It will be every day for 21 days, then he gets the fourth week off. If his immune system drops too low, or if he needs any blood products, we will probably
Cards from a church class.
stop. I am still not finding anything for him particularly. I did see an interesting article where they are getting closer to finding out where his specific cancer starts, the “epigenome”, which St. Jude is involved with. That doesn’t help Eli, but it was still interesting. I sent his MRI images to Mayo Clinic to talk about the immunotherapy trial, but I am getting no feedback as to how the trial is going, and it is closed right now, so we would have to put him on this anyway to get him on something. The doctor seems very nice, and so far has always been responsive even though we are not her patient. We were at the clinic most of the day Tuesday, getting his blood work and
It's a big pill!
an infused antibiotic that is preventative for a certain kind of pneumonia that chemo patients are susceptible to. He still has no complaints of any pains. I thought he seemed more tired the last couple of days, a little quiet. In 2011, when he was first showing symptoms, his main problems were, pain in his neck, nausea and fatigue, so I am expecting that again except for the neck pain because that was from the original tumor. But, overall, still seems to be doing fine.

It's World Cancer Day, and International Childhood Cancer Day. According to the WCD organization website, 8.2 million people die from cancer every year, and 4 million of those are of pre-mature age, it says. It clarifies that "pre-mature" is age 30-69. Anybody else go
Caleb discovered Magic Tree House books.
"hmmm..." at the clarification of “pre-mature”. Me thinks they need to expand their definition of “pre-mature.” Not to say that those ages would not be, but let’s just say anybody under 69 is considered pre-mature, and then add the 200,000 children that the ICCD website says are diagnosed globally every year to the total number. Almost 16,000 of those world-wide diagnoses are from the U.S. Twelve percent of those children will die from the disease. I say that 100 percent of that 12 percent are pre-mature deaths. I’m sorry, I get frustrated when the kids are looked over, but thank you for remembering cancer fighters, young and old today. It is a sad thing that unifies the world.

We have been up to the school to watch Caleb participate in chapel this week, and just errands and chores otherwise, plus a lot of car show prep. We are waiting on some posters that are being framed
Making a birthday cake for a special friend.
for the Mustang room before we can do any more in there. We are looking forward to a regular, quiet and slow weekend with nobody to deal with, just house stuff to catch up on, still trying to get out of the storage unit, and some extracurricular activities, school work to catch up on for the kids. When Eli was in his first treatment at Memphis, it was the last half of Abbey’s third grade year, the first half of her fourth grade year. I believe it is during those years that a kid becomes a student (just my mom observation), and being abruptly thrust into this new (scary) world, just with the chaos that we lived in, me being gone to Memphis for months, and having to rely on precious friends, who had their own families, to keep a discipline in our home that was focused and consistent (another way cancer is
Bruce with his new wheels on.
 destructive to the family), I think Abbey missed the boat on how to be a student. Plus, she is quite content to fly under the radar, with as little attention as possible so that she can do as little as possible, therefore, she wasn’t going to chase the boat down. I don’t think we saw it happening as we were so distracted with Eli, or really, I just thought growing as a student was something that was natural, and it would come, so I didn’t give much thought during my distracted state. And then we were struck again with the chaos of cancer, so the need, or deficiency continued to lay dormant as she was still content at receiving no attention, and became skilled at manipulating the attention away from her. So, here now, in seventh grade, we are struggling with her and school work, and it is not an intelligence thing, and it is not a learning disability. I really think most of the problem (not all, some of it is personality) can be traced back to those years when things were so crazy for us at a time in her age that was developmentally important to these habits. She is average smart, capable of doing the work, but we seem caught between her age as a student which should be independent, and her skill at being a student, which is below her age. Anyway, we have some hard decisions coming concerning her education, and, unless she turns things around, no one is going to be happy. Abbey’s attitude is very familiar, so I am sad for her struggle and what it will mean for her later.

And, I’m sorry, I didn’t mean to hijack Eli’s post with his siblings, but it is another example of how cancer affects a family, and the trials and struggles that go on whether you are dealing with cancer or not. Anyway, just things that most would take for granted, all the every-day logistics, concerns, stresses don’t automatically stop or automatically get done just because you are distracted with cancer, and just because you have beautiful people to help you. I can’t even think of the right wording to describe the eliteness of support we have had and continue to enjoy over the last four years. Still even with the perfection of “The Machine,” which I called it, there are residual, peripheral costs of cancer, and I think Abbey is paying one of those.

I am very sad to learn that little Charlie, I believe age 4, fighting the same relapse cancer as Eli, but different subtype, has been sent home on hospice care as the cancer has overtaken his body, metastasized outside of his central nervous system. In addition to the devastating nature of the situation in general, to have brain cancer metastasize outside the central nervous system is unusual, as I understand it. Young family, it is just heart-wrenching, and I am so sad about it. Just pray for him and his mother Scarlett, dad and baby brother. And for a little boy named Preston, as well, who is fighting relapse.

Remember to get in your Eli shirt orders, it’s been a little slow, so I may wrap it up early if it seems like we are done with the orders. The form is http://goo.gl/forms/zMFVM4oDaQ They are $5.50 each, add a shipping guesstimate if you want yours shipped. These are just the original shirts from four years ago.

Lastly, I am excited about a fundraiser this month that Team Victory 4 All is getting ready to announce. We will be hosting a spaghetti dinner on February 26th to raise money for our Healed and Home fund. This is the fund that we are growing and holding to help pay the funeral expenses of children lost to cancer in North Alabama, for right now. I thought it would be neat to hold a fundraiser exclusive to that effort. We are excited to have married duo DEAN perform at the dinner, and they are absolutely incredible. It is going to be a great night to just hang out together, with dinner and entertainment, makes for a fun family night, date night, friend night, or if you can’t stay, a take-out night. We will have call-in, carry-out available and will run your order to your car. It will be at the Athens State ballroom, and dinner includes AYE spaghetti, plus a side salad, bread, drink, and a dessert. Pre-order tickets before February 22 at $8 each, $3 for kids under 5. At the door, tickets will be $10, and $5 for kids under 5. I hope to build this fund, and hold it, never use it, but it will be nice to have it if ever a family needs it. You can pre-order tickets through this link: http://goo.gl/forms/xSwl1rjYpX You can also visit our website at www.teamvictory4all.org or join our Facebook page to keep up with all that we do.

Thank you, as always, for your prayer efforts. I hope that you can see how your petitions are being answered.

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