Thursday, July 23, 2015

(I'm sorry it has been so long since I have posted here. I only had my phone for a while and it is tough to post from that. I hope this catches our blog followers up)

“It’s almost not fair to have a mother who has the same personality as yourself,” Hg said with a frustrated smirk. A counter reply of my own that was just what she would have said, had allowed her no further ammo in our conversation. It’s funny how they do not realize from where they get their “cheekiness” (I’ve been binge-watching all the seasons of Downton Abbey). The kids came to Houston (I almost wrote “Memphis”, ha! It’s like “second verse same as the first” for me a lot of times.) over the weekend to stay with Eli and me for two weeks before going home for good to start school.

And, I finally have my computer back! I was almost lost at first. I left my charger at home. So, there I was, with just my chubby fingers and a smart phone to do updates, and I couldn’t get it to work very easily or well with the blog. I rarely get to watch or want to watch television, but there were a couple
Eli can't turn down a warm blanket.
 of movies I was curious about (The Conspirator and Secretariat), then, I decided to see what all the fuss is about for Downton Abbey, the British period-drama on PBS. I could access all the seasons through Amazon Prime for free and Vic had it set up to go through the television. So, with only Eli here, and him going to bed early, I cranked those out, and have now joined the eager lot for season six. I was itching to “work” - what is work for me in writing updates, blog posts, press releases to keep our non-profit in front of the media in case they need to fill a hole, marketing materials - but it was nice to escape for a bit. I would catch myself doing that, suddenly, realizing that, for two hours, I hadn't thought about childhood cancer or Eli or being away from home or needing to sell a home. Sometimes a vacation in a person’s mind is a great alternative to a vacation at the beach.

Eli has had a rough time, still, and we believe it is due to the chemo. Uncertain at first (and only cautiously convinced now), because nausea and fatigue were the two main symptoms when he first presented (looking back, we realize this), so naturally I started frantically throwing up my arms
I hate video games, in fact they have been the bane of my marriage, but they
are the only thing that all four can do together.
 yelling “progression! it’s got to be progression!” But, he recovered after his week off, and it started again after the treatment started again. We took the doctor up on the offer for us to see an oncologist regularly since there is nothing in the protocol for this care and check (even though this is a chemo trial, not a neurosurgery trial). In other words, Eli was going for this infusion, and the doctor (who is a neurosurgeon) did his neurological clinical analysis (balance, muscle control), the nurse took his temperature and blood pressure, and that was it. And, he always passes those checkmarks - which is great since poison is being applied directly to his brain, and any problems with any of that for Eli would be a clear indication that there was an issue. But, there is an obvious affect from the medicine. His symptoms of fatigue, lack of appetite, abdominal pain, need to be monitored regularly through blood work, and addressed just in case anything is becoming threatening and because it is affecting his quality of life. He has lost
We love Legos!
 almost seven pounds in a month and a half. That’s a lot for an already little guy, and if we can’t stop that where it is right now, a temporary feeding tube will be our only option pretty soon. He is in so much abdominal pain. I even had to carry him up the stairs to the apartment yesterday because the pain in his side was so overtaking, he almost collapsed in sadness that it hurt (and he is tired of it hurting, too). I rented a small youth wheelchair so that we could go more places with him (in our second week now, he’s gotten to where he cries to even stand up) that everyone will enjoy. He is a hair better today, which is his usual pattern.

So, as I mentioned, we saw the oncologist, which is the same oncologist that we were assigned to when we were part of the NOAH, Dr. Zaky. We really liked him. He seems very kind, and interested in exploring anything we bring up. So, we will see him each week now. When we were home for a week, we had blood work done at the St. Jude clinic and sent back to Memorial Hermann in order for the second cycle to begin. And, I think I said in the last post that it was all really good, even his thyroid was normal although I had not been giving him his hormone meds. That was two weeks ago. His blood work this week is also really good, but his hemoglobin is low, skirting transfusion, and his prolactin is low, which is a hormone produced by the pituitary gland (which I’m sure is limping along). So, I am watching him close (remember, I’m just a mom, with no medical background beyond a first aid class decades ago) for any signs that his hemoglobin has dropped more, and we plan to make an appointment with an endocrine specialist at Texas Children’s Hospital which we have heard is really good. We are in the midst of medical supremeness, so might as well make the rounds and hit them all. We have an endocrinologist at St. Jude in Memphis, but a trip to Memphis would be difficult, and it would be nice to have another opinion anyway. We also have an appointment with a GI doc to rule out any of that activity or lack of activity as cause for the abdominal pain. But, I will be surprised if that is what it is.

So, that’s where we are now in wrapping up the second week of the second cycle, which is exactly half-way through the trial. We went to the museum for a little while today, and we went to see the Minion movie today. We are scampering to get in some things before the kids go home for school, which is also when Eli will have his next off week. We hope to go home as well, but it will depend on how he is doing. With Hg going back to school, we have a lot of school supplies to prepare and gather. Plus, we need to freshen their closets with school dress code clothes that fit, especially Hg since she was not at school last year, she will have outgrown clothes from seventh grade for sure. That off week - which goes really fast - I hope to get them set up so that it will be easy for them and Vic to start school. Depending on what the MRI at the end of the trial shows, right now, we plan to enroll Eli in the public school system and take advantage of a couple of individualized programs it has.

So, my week at home is already filling up with chores, and appointments. The last time I was home, my week was filled with appointments, too, but I made sure that I finally took advantage of something given to me over a year ago. An embarrassing public display of stress after Eli’s first relapse caused my precious friends from church, school, and anywhere else, I guess, to purchase me a gift card at Blue Med Spa. I think they thought I needed de-stressing, and a gift card from there would ensure that I didn’t do anything practical for others, only fun for me. I have just not had time to do it. For me (and any busy mom) to carve out over two hours just for myself that benefitted or furthered nothing but my own peace is almost impossible. So, I had tried two other times to go, and had to cancel for this or that reason, but I told Vic that I was making it top priority that week because I was afraid that it might expire, and I felt like having the snot squeezed and chopped out of me. It was quite a bit of money, so I was able to do some kind of package that the lady on the phone said was popular - a facial and a Swedish massage. One hour was dedicated to my face and the other to the massage. I said, “I’m sorry, let me make sure I understand. You are going to do something to just my face for a full hour?” So, I get there, and am in facial position. The lady with some type of Norwegian-ish accent asks, “What does your cleansing routine include?” I said, “soap.” She didn’t say anything else about it. Then she asked me to get undressed and put on a robe after she stepped out of the room. Now, why on earth do I need to get completely undressed for a facial. I don’t think I’m missing any blocks of time in my recollection of the event, so I guess it is on up and up. It was great, I enjoyed having my face worked on for an hour. Afterward, I was walked, still in my robe, to the massage lady. I knew I was in trouble when I saw a tiny black lady with big hands. I’m pretty sure at one point, she had to be standing on my back because there is no way her tiny body could have produced that much pressure standing beside me. I had been afraid that I would fall asleep, but there was no chance of that. It was obvious when she hit a tense spot because I think she pulled out a third arm, like Disney’s Stitch, and wore it out. And, it was weird when she was working one area that another area would feel it. I think she hit a spot on my right buttock that closed up my left nostril. So, it was a lot of fun, and I am so thankful for the friends that I have old and new that love me and my family.

Vic is not coming to Houston this weekend as he usually would. He brought the kids this past weekend, and then switched cars with me and drove home. I knew that his car sounded rough, but it always dose since we had the issue with the u-haul hitch that was on it, so I didn’t think much of it. Well, the water pump was going out, and he just made it home in time to get it to the toyota place. It’s a young chick compared to Big Sam, but with 127k+ on it, maintenance is expected. However, we want to catch that maintenance before it catches us and we cut it close this time. So that has been fixed, and it was in need of new tires, which had also been put off and with as much driving as we do, we want good tires. So, with school preparations, car maintenance (normal stuff doesn’t stop when cancer strikes), two homes, Vic opted out of paying for a plane ticket this weekend, since hopefully we will be home the next. The kids will miss him for sure because I am not a very good playmate.

I don’t think I’ve mentioned this yet, but Hannah, the little daughter of the people that had helped lead us to Eli’s last treatment, has been cleared of suspected relapse. Whatever they saw on the routine MRI about a month ago, was not there a couple of weeks later, so we are relieved and happy for all of them. Drew, the teen that started on the NOAH trial, is going home to talk with their original oncologist about a new plan. Baylee that I’ve mentioned before got a good report, and journeys on.

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.