First of all, to the anonymous snack gifter who left Mrs.Fields cookies and boxes of the dried soup I mentioned in my last update - Thank you very much!! He’s already been into both and sometimes eats them when he turns down everything else I might offer him.
Thursday, we arrived at Egleston at 10:20, but spent about 30 minutes “circling the drain”, so to speak, trying to find a parking space - no joke. Word to the wise, if you’re coming to Egleston and plan on using their parking deck, mid-morning is NOT the time to do so.
Once we were in the clinic, Chase was prepped for a lumbar puncture while we waited for Dr.Cooper to stop by. Wednesday afternoon, he called David and I and explained that we were going to have some choices about how Chase would be treated this time. Choices? I greatly appreciated the head’s up the day before regarding some options, but me being the visual person that I am, it wasn’t until I was in the clinic that I was able to fully understand the terms he was using. I mean I’ve gotten pretty good at some of the medical jargon over the past 11 months, but when you start tossing words around like clofarabine, cytarabine (lovingly known as AraC around these parts), daunorubicin, mitoxantrone, and my personal favorite because it’s so fun to say - gemtuzumab or mylotarg, even MY head begins to spin.
So what were our choices and why, you ask? Normally, Chase wold have received much the same regimen that he did during his third round of chemo from last time. The only difference being, as I understand it, the addition of gemtuzumab to the mitoxantrone and cytarabine (AraC) that he has received in the past. However, there is risk involved with the mitoxantrone. Apparently, there is a lifetime limit for how much you can receive because it can cause permanent heard damage sever enough to be fatal even in patients without a history of heart disease or other problems. Chase was not at his lifetime limit yet, but would be very near it after having gone through chemo this time.
And the choice? Well, two days before Chase was admitted, a new clinical study became available specifically for young AML and ALL patients who have relapsed. For those who may be reading “clinical study” and wondering if this is one of those blind, randomized studies, it is not. The chemotherapy drug at the center of this study is clofarabine, which is already FDA approved and has been used in adult AML patients as well as ALL patients. Instead of the mitoxantrone, AraC, and gemtuzumab, this protocol would consist of clofarabine and AraC, but a lesser amoutn of AraC than with the original protocol as clorfarabine acts as a “booster” for the other drug. Clofarabine has its own set of side effects, which can include the usual (vomiting, fever, loss of appetite, constipation, fever, headache, etc) but also bad abdominal pain and both kidney and liver problems.
Should Chase experience a second relapse within 6 months of this course of treatment, he cannot undergo another bone marrow transplant. The only option at that time is chemotherapy with the original protocol drugs. This would, however, not be possible if we chose the original protocol because he would have gotten too close to his lifetime maximum of mitoxantrone.
Given the potential dangers of mitoxantrone and perhaps not being able to use it as a relapse treatment if needed again, we felt the best choice for Chase was to participate in the study. Since Dr.Cooper, his primary oncologist, is also one of the principal investigators for this study and would be in constant contact with other doctors monitoring other children in the same study, we felt very safe having Chase take part. Also, at any time we can pull him from the study and go back to the original treatment protocol. Additionally, Chase will be monitored more closely as they have to document every reaction he has to determine if it is attributed to clofarabine or something else.
We did have to wait for his spinal tap results before we knew if we would even have a choice though. Any patients with too many white blood cells in their spinal fluid are automatically ineligible. Thankfully, we were given a choice though. As gut wrenching as the waiting week after week was, had he been admitted Tuesday when he was originally scheduled, this wouldn’t have been offered to us at all. Even with all of the information I was presented, I’m not about to tell you that I wasn’t nervous. No matter which protocol we chose, I would always be nervous when they’re putting toxic substances in my child.
Backing up a bit, when Dr.Cooper came into Chase’s procedure room in the clinic, one of the first things that Chase mentioned was his casual attire. What was it he said? It was something like, “What’s with your clothes? That’s not what you usually wear.” And this was BEFORE he received the chemo treatment to his spinal fluid that tends to lower his inhibitions. Usually stuff like that comes out of his mouth afterward. Oh boy. Dr.Cooper took it in stride though, commenting that he wasn’t actually on duty and was only there to see Chase. You would think he had been wearing jeans and a concert t-shirt the way Chase reacted. Although I’ve never seen Dr.Cooper wear a coat and tie, in my opinion what he was wearing was fine. Thankfully, Dr.Cooper took it all in stride.
Thursday evening was actually great! Once we got into our room - one of the BIG ones, Chase headed to the teen room, which actually had other teens in it. And let’s not forget what happens on Thursday nights. BINGO and then CURE brings dinner. Mellow Mushroom pizza - yum! Chase came back from BINGO with a few things he liked, although some other kid got the Nerf gun he had his eyes on. Oh well, there will always be next Thursday.
Because he had already received chemo to his spinal fluid, Chase did not begin chemotherapy until Friday afternoon. I was very thankful for the breather that it allowed both of us to have. It is certainly no fun to jump right into chemo the minute you’re in the room. His protocol ended up being 5 days of chemo with Clofarabine over two hours, a two hour break, and then AraC over two hours. So, from about 1:30 when he begins to be pre-medicated for chemo with anti-nausea and cortisone drugs until around 8 pm, he’s pretty much bound to the room.
One other issue Chase has had, which is new this time, are red sores on his toes and around the sides and heels of his feet. It started with one a few weeks ago and they’ve developed steadily since then. Friday, right before he started chemo, two dermatologists came by to examine his feet and determined they needed to biopsy two different samples to see what it was. If it was caused by the leukemia, the chemo would take care of it, but at that point we didn’t know what it was. Although pretty ugly looking, they weren’t causing him any pain unless a lot of pressure was put on them.
Not long after his first chemo started, a nurse put this white “goop” (topical anesthetic)on the two places where they were going to take samples to numb the skin for the injection of lidocaine. They came back about thirty minutes later, and by that time Chase was already light headed and growing nauseous. Thankfully, they put it off until Monday. Chase was quite agitated from the nausea and from feeling “off”, so they added Ativan to his Zofran, which didn’t appear to help at all. Once that took effect, he felt much better.
Jason (from Scouts) stopped by later that evening during the second chemo. Unfortunately, that’s when Chase lost it - literally. I think both Jason and I saw it in his face before it happened. I felt so bad for Chase because I was so hoping that he would be able to get through it without getting sick. Even though that happened, he quickly admitted that he felt much better now that he had that behind him.
Day 2 of chemo went much the same. He didn’t experience that fuzzy headed feeling , but did get nauseous again toward the end of the first chemo. His nurse had gone out to get him a dose of Ativan, but it was already too late. Since he had eaten very little at all on Day 1 and Day 2, he didn’t have much in his stomach and dry heaving was painful. Thankfully though, he ended up sleeping through the second part of his chemo that night. What really tore me up was Chase asking if they could stop the chemo. If I could do that for him, I would more than anything. I can't begin to understand what it's doing to him that I can't physically see myself. If only I could trade places with him!!
On Day 3, he was pre-medicated with both Zofran and Ativan. Poor Chase reacted to that more than he did the chemo. For about eight hours, he was agitated, confused, and somewhat disoriented, too. He wanted to sleep very badly, but couldn’t seem to fall asleep no matter how hard he tried, which only served to further agitate him. Since he couldn’t sleep, I tried to convince him to go downstairs to the lobby because there would be a few Miss. Georgia contestants demonstrating their talent and having a fashion show. He hedged about going several times, but in the end went downstairs with me. They were done with their show, but a few of the contestants came over to him and spoke for a few minutes.
Chase’s impression? They wore way too much make up, were too self-absorbed in their appearance, and about one blond contestant who had an irritating laugh he said, “She’s dumber than a bag of rocks.” But hey - at least he got out of bed!!
Unfortunately, later when we were back upstairs he got sick again. He was trying to clear his throat and having a difficult time doing so, which may have caused it because he wasn’t feeling bad at all before that happened. He recovered pretty quickly though, but refused to eat anything for dinner as he had done for breakfast and lunch, except for a few sips of water.
On a much better note for Day 3, Chase made the acquaintance of fellow patient who is also 14! Her name is Monica and they spent a good portion of the evening talking and hanging out. Chase would stay in bed all the time (and has in the past) if you let him, but thankfully she was easily able to talk him into walking around with her. I met both Monica and her mom the day before and she will also be going in for a bone marrow transplant when she comes back. I think it will be great for Chase to know someone else going through the same thing. Just knowing that you’re not alone in what you’re about to experience has to help. Apparently, there are two other teens who are here now (girls around his age) who also will be going to BMT as well. We met one this morning whose name is Bridgette, but we haven’t met the other girl yet.
Monica was able to go home today for a rest before returning for BMT. I know Chase had to be a bit disappointed that she was leaving so quickly after they met, but we both understand the excitement of being discharged.
Day 4 chemo has gone very smoothly so far. Although he was pretreated with both anti-nausea drugs again, he didn’t experience the weird reaction he had the day before to the Ativan. While Chase was sleeping this morning, Dr.Cooper came in and we were discussing his reaction yesterday. He made the comment that Chase may be one of those kids who just reacts really weird to some new meds, but (and he said this jokingly) at least it will probably keep him from being a drug addict as a result. I thought Chase was out of it and not listening, but he perked right up after that wanting Dr.Cooper to repeat himself.
Later, Dr. Cooper was back in the hallway when I went out to get something out of the fridge after his first chemo. He saw Chase and from the hall asked him how he was doing. Chase grabbed his throat and made like he was choking - eye rolling into the back of his head and all. Dr. Cooper laughed and shook his head, telling him that he better be careful because he wasn’t above calling the whole team in there. It’s great to see Chase joking around, and the doctors too for that matter.
The two dermatologists did come back to get a biopsy of the sores on his feet. Back went on the "goop" and half an hour later they started. The burning they said he would feel (not the needle poke) was a lot more intense than Chase had anticipated. Although he didn't feel anything they did afterward, he quickly informed them that they would get the one biopsy and one only. I could tell they were hoping he would give in and let them do the other one, too, but he was firm in his decision, which I backed completely. He doesn't have any control over the chemo and what it does to his body, but that he most certainly did and chose to exercise it, too. We should get the results in a couple of days. Hopefully, it's nothing serious and will go away as the chemo takes effect.
Chase actually ate food today!! All he had yesterday was a box of orange juice and two tater tots. Today, all he asked for was a box of orange juice, but ended up stealing my bowl of cereal while I was taking the milk back to the fridge. The rat! I didn’t admit it to him, but I was hoping he would take it. He loves the Special K Chocolate Delight cereal. He did say it didn’t taste as good as he remembered, but it may be the chemo affecting his taste buds. He also had some chips and tea between chemo treatments, too. I’m just thrilled that he’s eating without me nagging him to death, which I know he doesn’t care for.
Overall, sleeping, or the inability to fall asleep, has been a persistent issue. Most of the time, I’ve found myself having to wrap my arms around him and/or rub his back until he falls asleep. Typically, I end up falling asleep as well and find that a few hours has passed. Because of this, I’ve had little time to get on the computer to post updates! He managed to fall asleep this afternoon on his own though, which I hope he can continue to do when he feels the need to nap or go to sleep at night.
Thus far, today, he hasn’t had any nausea and has kept everything where it should be. Let us all pray that it stays that way for the rest of the night and for his last chemo treatments tomorrow!! He’s been asleep for a while, but I hope I can get him interested in watching a movie and perhaps eating some soup.
I know these long updates are a lot to read and process. I’m hoping that with him nearing the end of his chemo that updating will be easier to do. Thank you once again for all of the prayers and support. We appreciate it so very much and cannot thank you enough!!
God bless!!
Caroline
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