Thursday, April 17, 2014

MRIs, Bladder Woes, Hospital Brain and Radiation - Oh My!

Yesterday, April 15th, was a long day. It all started at 5:00 am when a nurse technician arrived to take Chase's blood in preparation for his MRI, for which he would be sedated. Although there are at least three lights in the room that would provide ample illumination without blinding someone into full alert mode, none of these technicians seem so realize this. Note to self: Mark the light switches for future reference.
Another complaint is that they won't use one of the three existing IVs that Chase already has to draw blood. I'm not quite sure WHY since the use these to pump him full of fluids. Maybe this is something new they've started since the last time he was "inpatient", but I hate it that he has to be stuck over and over again. He's gotten a collection of cute looking bandaids, but I'm not sure what the difference is between freshly drawn blood versus IV blood. If anyone would like to comment on that, please feel free.

We both managed to get some more sleep, knowing they would be coming for him around 7:30 am. Or so we thought. It turns out, the MRI people called at 6:30 and wanted him to come on down.

 So here is where the "bladder woes" begin. Let me preface this by saying that he's been on a variety of pain medications and muscle relaxers, one of which has interfered with his ability to "void" in the past. They took out Chase's catheter Monday evening and he didn't go to the bathroom on his own that night, so we tried first thing in the morning before they wheeled him down for his MRI. No luck. The bad part was that he felt like he needed to go. Once we were down in the MRI room, he made one additional attempt to go without success. By this time, he was getting concerned about not being able to go and so was I. We were both thinking that the medications were inhibiting him, but until they wore off and he was finished with his MRI, there would be no way of knowing. Until then, he asked if they could put a catheter back in, but that would take a doctor's order to do so, which they MRI team couldn't wait for.

The MRI was scheduled by Dr.Cooper to scan from the top of his head down to his tail bone to verify if there are any other chloroma (leukemia tumors) in his spinal fluid or brain, so both he and the radiation team will be able to plan his treatment. Since this scan would cover a great deal of his body, he had to be sedated to ensure he stayed still for the entire procedure.
While he was being scanned, I returned to the room and went back to sleep. I expected him back around 9:30 or 10:00, but he didn't return until almost 11:00am. When he did get back, he was in pain and not because of the scan. He was still not able to go to the bathroom and his bladder was causing him pain. He immediately asked to have a catheter put back in, which again means that a doctor has to be consulted. Apparently, they have a new portable mini-sonogram device that they wanted to the nurse to use to see what his bladder looked like before moving to use a catheter. Since he had just received an MRI, his nurse, Amanda, decided to look at his scan first to see if she could see anything before using the portable scanner.

Chase told me to go out and tell her that he was going to refuse to drink anything else or take any meds until they got a catheter in him. He is usually pretty laid back about most things, so this was unusual of him to make a demand like that. I went out to the nurse's station, unaware that they were looking at his MRI. I saw Amanda surrounded by a couple of nurses and then heard a collective gasp. One of them said "That looks like a uterus!". They parted and from a fairly long distance, I could see a very distinct bladder-like shape on the screen. I knew it was his scan and his poor bladder was HUGE. No wonder he was in pain.

Amanda got up and gathered some catheter supplies and along with another nurse they both came down to the room as quickly as they could to relieve him. Even that was slow going. I felt horrible for him. They had to really push on his bladder to help him, but it wasn't long after the pain started going away. The catheter didn't stay in, but they kept it as part of his orders just in case. He ceased taking Norco, which he thought was the culprit and later that day was able to go all on his own. Praise God!
By this time, it was closing in on noon and I had a 2pm appointment that I had to leave for very soon. Chase pretty much passed out and went back to sleep while I showered. My Mom showed up to sit with him while I left. Right before she got there, I made a list (on my phone) of items I needed to pick up and also plugged my phone in since the battery was running low. I also looked at the Google Maps to see which route would be the quickest to the Norcross area and noted a couple of wrecks on the highway, no matter which route I chose. Ugh! But at least I was preparing ahead, right?

Well, here's where the hospital brain comes in. I was so intent on making it to that appointment on time that I forgot my phone in the room. I didn't realize that I had left it behind until I was too far to turn around. To make matters worse, I arrived 15 minutes ahead of time for my appointment, which turned out to be at 1:00pm not 2:00pm, which meant I was 45 minutes late. They tried to call to see if I was running late, but of course my phone was back in the hospital room....ON VIBRATE!!! I didn't want calls or text messages waking him up. So, my Mom wasn't able to respond that I got the appointment time wrong. UGH! Thankfully, they knew about Chase's condition and were very understanding.
Since I was too late for that appointment, I drove on home to pick up a few things before returning back to the hospital. Thankfully, Dr.Cooper had not come by the room yet with any new information. He dropped by around 5:15 that evening and David came in not long after so he was able to hear first-hand what he had to say about the latest MRI.

So, here is a bit of bad news.
The tumor (chloroma) that was compressing his spinal cord isn't the only one they found on the scan. Dr.Cooper said there are multiple areas along his spine that show signs of other chloroma forming. Thankfully, none appear to be compressing the spinal cord, but some are attaching themselves to the bone and acting "moth like". If it wasn't already urgent to start some kind of treatment, it was now more urgent than before. There was no more talk of a spinal tap either. He said he didn't need to biopsy every thing that was "lit up" on the MRI to tell him that there are others forming (or to know that there are leukemia cells in his spinal fluid).

The question at this point was about the treatment plan, which he wasn't able to elaborate about since radiology had not had a chance to view the scan and discuss treatment with him. He did talk about chemotherapy again, but nothing terribly specific. Heavy chemotherapy cannot be done at the same time as radiation or immediately following it either. Apparently, that can cause the blood counts to plummet for months. I had no idea. So, any chemotherapy that Chase will have will follow the radiation. We just don't know what kind of a lapse in time there will be between the radiation and any chemo that he may receive. It still sounds like he'll have some type of intrathecal chemo (chemo delivered directly into the spinal fluid) after radiation, but what other type of treatment he may receive and whether or not he may be considered for another transplant is unknown (to us) at this time.
I will say that Chase is not interested in another bone marrow transplant, even if he was a candidate for it. As a mother, it's a bit nerve wracking to know that because he's 18, he's the one that has the last say about his treatment or lack of. But we will leave that discussion for another day and hopefully it's one that we'll never need to have.

So, Tuesday ended with some news we weren't thrilled about and left waiting to learn how the radiation treatment would work. And that brings us to today. Another early morning wakeup call with bright lights and someone poking him to draw blood - why??? I ended up asking Colleen, the head Aflac nurse about it, so hopefully they'll cut back on the blood draws until they're really needed.
And it was another day of urinating issues. Ugh! During the night, he received a valium because he's started having some pain on the left side of his neck, near the incision. Valium, being another type of muscle relaxer, we think is impacting his bladder. Amanda was back as his nurse again today, ready to rescue him with a catheter, but thankfully after the Valium wore off, he was able to go on his own! Yay! You never think that you would be happy about such a common bodily function, but when you can't go it really hurts!! Chase can attest to that.

So after those issues this morning, we were a bit busy with a variety of medical and non-medical visitors coming by. The one who surprised both of us was Mrs.Reed, Chase and Williams' Geometry teacher from Snodon. I heard a knock at the door and said, "Come in". She was standing there and I thought to myself, "Gee...that woman looks a lot like one of his teachers." Lo and behold it WAS one of his teachers. For those who don't know Chase too well....he likes Math! I can tell you he didn't get it from me or his father, but he likes it, so he was happy to see her. Apparently, Mr.Costello, the boys' U.S.History teacher, had let her and some others know about Chase. Thank you, Mr.C!! I can tell you that it really perked him up to have someone drop by without any sign of Emory, Aflac or CHOA on their apparel or badge. It's not that we don't love all of them who are taking such wonderful care of him, but her visit was a great surprise.

While she was here, the pain doctors stopped by. They had heard of his issues urinating and since he said the Morphine button wasn't working well, they removed it and will try other pain medications that target nerve pain instead of muscle relaxers. So, we'll see how those go.

Oh, and he's been keeping his eyes closed A LOT! Whenever anyone asks him, he says that he's tired. Well, out of the blue today, he says that his eyes hurt!! What? I started fussing at him immediately. "How long have they been hurting and you haven't said anything?" That boy drives me crazy sometimes because he won't tell you when he's hurting. Thankfully, we think it may just be dry eyes because the light isn't hurting him and a warm, most washcloth placed over his eyes seemed to help him out.

Not long after Mrs.Reed left, Dr.Natia Esiashvili (or simply Dr.Natia), of the Winship Cancer Center across the street from Egleston, dropped by. Next to hearing from Dr.Cooper, she was on the top of our list of people were were VERY anxious to see come through our door. She's a lot like Dr.Cooper in that she has a very no-nonsense approach to how she went through her description of the radiation treatment and the potential side effects, many of which are similar to chemotherapy. I like her. She was more than willing to answer any questions and wanted to make sure that we both felt okay with what Chase was about to go through. Like Dr.Cooper, she wanted to start treatment on Chase immediately and within 90 minutes, he was being wheeled through the underground tunnel joining Egleston to Winship to their radiology lab for a scan and to create his mask.

I had no idea what this would entail, so I was a bit taken aback by the assortment of hardened mesh masks on the wall labeled with a variety of patient names. Apparently, to ensure that he doesn't move during the radiation treatment, they first have to scan him using a CAT scan machine and align him "just so", followed by draping his face and shoulders with a flexible mesh blanket that quickly hardens to form a mask. The mask has some sort of handles or grooves on the sides that can be placed into brackets to restrict his movement while he's on the table.

It's pretty surreal to watch them place this on his face and work very quickly to mold it to his face, neck and shoulders. He was able to breathe fine since there were openings in the plastic. They asked if he was okay and he said, "Yes, this thing smells like Mexican rice."

Really?

 He's been kind of wanting tacos lately, but they'd be soggy by the time they got here, so I think he was projecting his craving. Dr.Natia had said that she thought that was the first time someone had ever told her the mask smelled like Mexican rice. Leave it to Chase!

The entire procedure to "map" and "mask" him was done pretty quickly, in about 30 minutes. He has an appointment tomorrow at 2:30 for his first radiation treatment. I don't know yet if they will radiate from the brain to the bottom of his spine or if they will focus on the bottom of the spine going up to the incision to prevent his neck area from any aggravation since it's still quite tender. I believe the plan is to radiate him from essentially brain to tailbone since he could potentially develop chloroma anywhere spinal fluids can go.
Currently, Chase is looking at having radiation treatment daily for 2 - 3 weeks. It's my understanding these sessions are fairly quick. I don't think he would have it on the weekends though. Also, we're not sure how much of the treatment will take place on an outpatient basis, since we haven't heard the word "discharge" yet.

I will say that I was incredibly impressed with the radiation team and Dr.Natia. She was with him the entire time, ensuring the proper alignment, that the mask was as it should be and that he was kept as comfortable as he could be, especially his neck.

After returning back to the room, I headed out to my Mom's house to spend some time much needed time with William. He's been staying with my parents, which is what he did during the last extended time that Chase was in the hospital. He's got Maya (the doberman-beagle) with him, too and she really comforts him. I'm so grateful that I have my parents close by to the hospital. I live an hour away, when traffic is agreeable, and they live about 20 minutes on a good day. And today was a beautiful day, too!! It was so nice to be outside. William had some coupons for Brewsters ( a local ice cream chain), so we headed there and enjoyed a treat under a clear blue sky with the sun shining on our back. We then went back to my parent's house and I attempted to help him set up a wi-fi extender for a computer. Epic fail unfortunately. We've used it at home and set up a password on the thing that even after resetting it, we apparently couldn't clear. My Mom said she may need to call the "Geek Squad". I'll leave that in her hands.

I hated that I couldn't stay with him longer, but I'm just glad that I could have some time with him - period. If there is anything I don't like, it's the conflicting feeling that I have about leaving the hospital but never feeling like I'm spending enough time with William. If anyone has perfected human cloning, please leave a comment at the end of this post and I'll be in touch. :-)

As always, thank you for the continued prayers, especially as Chase goes into his first radiation treatment. I'll give a report on how it went as soon as I can and let you know of any new information about his treatment, too.

God Bless!!

7 comments:

  1. Thank you for sharing such complete detail. God bless!

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  2. Thank you! My prayers continue. A cousin is going through similar treatment and your picture and explanation of the mesh mask is invaluable to helping me understand just what both Chase and Gloria are going through.

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    1. That's part of the reason why I post what I do. If it helps others, then I'm so glad!!

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  3. Prayers continue here as well. In answer to your IV/blood draw question, I don't think they can draw out from an area that they put things into. It's sort of tarnished and the blood sample would have all sorts of other bits and pieces of medicines in it which would require another draw anyway. You'd think they'd have an outgoing port for draws for folks who are in the hospital for extended periods of time, not just the IV's going in. I know I live to far to truly help, but please, if there's anything I could do long distance, let me know!

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    1. Thank you so much! Your explanation helps a lot. I knew there would be people out there to help clarify it for me. And thank you for the prayers as always!!

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  4. Prayers for Chase, you, and your family. I've been following Chase's journey for a long time.

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