Sunday, June 29, 2014

Getting ready for chemo on Friday.
Eli began cycle 7 on Friday of the chemo trio bevacizumab, irinotecan, temozolomide. Beginning Cycle 7 means we had a good scan! Yay, unofficially it means that, just because if we are continuing what we are doing, that means it is doing what it is suppose to do. His platelets are low, not quite low enough to do anything, but the Huntsville doc said that the protocol calls for a downed dose if the platelets continue to be low - or something like that - so she wanted to talk to his Onc. But Dr. Robinson, said that since he has not had to have a transfusion this go-around yet to hit him full dose (his counts were high) and give him a transfusion if he needs it. I figure he is thinking that we have knocked it down so far that we don’t want to let up just yet. After so many transfusions, I think they drop one of the meds, so it is a shame to start the transfusions, but it would be a shame to pull up on the hits as well. They will check him on Wednesday this week to see if he needs a
At home sick this morning, pretending to eat a biscuit.
transfusion. Caleb and Vic have fought off a little summer cold, and Eli now has it, but it’s not so little with him. He has a horrible cough and a lot of snot, but thankfully no fever. Since this is the top of the cycle, (can I just say that I love the “Jake at State Farm” commercial. I’m sorry, I’m at home from church this morning with Eli and it came on TV. Just love it, we quote it all the time.) he is taking the five-day oral dose, so it’s tough on him to be sick and take this chemo, though it is mild. I’m going to go ahead and start him on an appetite stimulant when we go for his check this week. It has become constant, literally, that I have to remind him, or tell him to eat or drink. I keep him within talking distance (sometimes yelling) and say every two minutes “take a bite, Eli…. take a drink, Eli”. It takes from meal to meal for him to finish even a half of a Subway sandwich, and an entire day now to finish one 16 ounce drink. These little cold viruses - which he is just, going to get
Caleb helping when we were in Memphis.
as active as we are and as active as we want to be as a family - are just killers for energy and appetite. I had hoped to get him to drink the smoothies that Lori makes for him to fatten him up healthy, but I just can’t get him to put anything in his mouth - literally can’t get him to put something in his mouth. So, even if it is a good, fattening smoothie, if he won’t put it in his mouth, doesn’t matter what it is. So, I think we will add the megestrol acetate (Megace) that we used during his first treatment. It is the stronger of what was available to him at that time, but it was the only one that seemed to make a difference. I hate, hate to, but I’m hating a lot of things we have to do, and sometimes you just have to deal with what’s in front of you with what’s in front of you. He just keeps losing an ounce at a time (a visit), which doesn’t seem like anything to notice when you are at the appointment, but in my mind, it is adding up.
At the Pink Palace in Memphis during our last trip.

Anyway, he is home this morning, not feeling well. I freaked out last night b/c I had to play pharmacist, and I have said many times before, if I had been smart enough to be a doctor, nurse, pharmacist, teacher, nutritionist, therapist, researcher, EMT, chef, the list goes on and on, I would have been one of those things - even just one - many years ago. So, for me to be required to “play” all those roles now as a mom, is just overwhelming sometimes. So, Eli was not feeling well at all last night, crying and very uncomfortable, agitated, but no fever, just a lot of coughing and snot. Caleb had run just a slight fever on Friday, barely made it to 100, if it even did, and it only lasted the afternoon. I have little confidence in our thermometer (Caleb seemed to feel fine, and was cool to the touch, so I don’t know for sure that he had one, but because of Eli we have to assume he did and react accordingly), so I’m going back to the old fashioned oral
This is a statue in recognition of a new
genome project at St. Jude.
 device though I do not like putting things in their mouths because of germs despite cleaning efforts. So, I have to assume that a fever for Eli is emanate because of Caleb. But, he is so fussy, and his nose was so awful, I needed him to rest for the night. He had his oral chemo, so I gave him ondansetron for expected nausea, then I gave him diphenhydramine (Benadryl) for his nose. Those are the two things that St. Jude regularly does, and that I have prescriptions for, for him, so I know they are ok. Then he felt so bad, just wouldn’t settle, so I wanted to give him acetaminophen just in case maybe his ears were hurting (he had complained once, and remember he had that horrible ear infection a few weeks ago), so that might help ease that. They do not like for him to take ibuprofen because his platelets are so low and it is a blood thinner. So, acetaminophen is my only real choice… sort of. My problem with acetaminophen is that it doesn’t work, just doesn’t. It is nothing, but it could hold down a mild fever. I need to know if his body has a fever, or if it needs to have a fever. I do not want to suppress a signal from his body. I do not want to mask a fever, so acetaminophen is not what I want to give him. St. Jude gave me a small prescription for morphine for him as a pain killer for his ears a while back. So, I knew that was ok, that I had the right dosage because it was his prescription, and that it would not mask a fever, so I
Caleb has moved on from building Legos from Lego to creating
his own Lego sets, taking pictures of it for the box, and
writing the instructions for building it.
gave him that small does, as well. Then about 20 minutes after I gave him all of that, it hit me that both an antihistamine and morphine make a person drowsy. I started to panic that he would be too drowsy, maybe would have respiratory problems that, now with this horrible cough, would cause him to go into some kind of distress or that he would be so drowsy his blood pressure or something would be affected. Anyway, so I threw a line (a late night text) to two pharmacist friends, hoping that one would still be up. I heard back from one right away (the other this morning first thing) that talked me down off the ledge, and then I called Memphis and they said it was fine, he would just sleep deep. He did, and his coughing let me know when it had all wore off about 400 hours this morning. But, he is in a much better mood this morning, though his coughing is really juicy. I really hate it because our Vacation Bible School starts today, and I really wanted him to participate. The VBS peeps really outdo themselves every year. It is original material to the congregation, and is a wonderful outreach to the community. We have big plans for the holiday
 weekend, too, so I hope he feels better soon, and that no one brings anything home from VBS besides a craft or color sheet (please keep sick kids at home and listen to their bodies’ signals!).

The house looks so great! I just want to sit still in the quiet, simple, cleanliness of it. We have had a couple of shows, and we thought one was going to snag it, but they cooled their interest. So, that was a shame… sort of. It is not a perfect house by any measure, but where is? And we love our neighborhood - the people in it, and its location. I am going to try to be patient for a few months, but then I may have to throw my hands up and say “oh, well, I guess we’ve got to move back in and try plan D.” I don’t know what plan D is, but maybe it will shape up by the time we need it. We’ve been driving around looking at potential places for ourselves, so that in case it does sell we might have an idea of what we are going to do. Please, keep this effort in your prayers because it plays a big part in our future and our flexibility to do what we need to do for Eli and all the kids.

Please, add a boy named Ben to your prayer list. His family just received word that he has relapsed, and please add four-year-old Bryce who has recently been diagnosed with medullo. Five-year-old
We saw this rainbow over Second Creek coming home from Memphis.
 Kapri began her treatment at St. Jude last week. You can send cards or care packages to her at the hospital. The address is: St. Jude Children’s Research Hospital, Attn: Patient Kapri Geernaert, 262 Danny Thomas Place, Memphis, TN 38105. I have loved seeing some video posted by Brayden’s mom of him laughing. He is struggling, but you can see the love around him. I have also enjoyed seeing pictures of Nolan’s siblings, and I hope they gain strength and understanding as the attention begins to die down a bit and they begin a new normal. I am also mindful of Ryan’s family lately. Those of you that have followed Eli for a while will remember Ryan who lived near us, but we met at St. Jude. I did not know him or his mom well, not really beyond Facebook, but we kept up with what was happening with the boys. He passed away a year ago February, and it is still hard, always will be, to face those memories each day. I can’t think about Ryan, without thinking about Jack, too. I have enjoyed seeing pictures that his mom posts about crafts she has busied herself with. She seems to have such a positive attitude. All these mothers and what they see in their mind’s eye each day weighs heavy. Each parent has a special role, that is how God designed it, so I can only relate to the one I am assigned (though I am a Daddy’s girl, so I do feel so sorry for these sweet daddies, knowing they are the protectors and watching helplessly as their families are attacked), so I pray for these mothers and the struggles they have inside.

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