Posted Mar 22, 2010 6:14pm
Unfortunately, since my last update (Monday, March 15th), Chase’s fever did not go quietly into that good night. Instead, it persisted night after night, often spiking again up to 102 degrees. Tylenol, thankfully, has been able to keep it under some semblance of control, but not before acting like an energy draining vampire and interfering with a restful sleep. Not to mention that every day of fever guarantees him another 48 hours of fluids and antibiotics.
In the past, Chase has had fevers during every admission, but none of these has ever lasted longer than four to five days (by my recollection). His blood cultures have shown no signs of infection and the CT scan was also clean showing no signs of a fungus-based infection. Any time we receive news of no infection is a blessing, but not knowing what is causing a fever that is determined to hang on night after night is mentally taxing and worrisome for the caregiver and physically exhausting for Chase. I did talk to Rebecca about his fevers and she let me know that what Chase is now experiencing is actually typical for most patients. It sounds like Chase has been rather lucky in the past to not experience these prolonged fevers. It did help to hear that this isn’t outside of the normal ranges though.
Adding to all of this is the fact that Chase has barely eaten a thing since it’s onset, taking in around 150 calories a day, if that. Last year, we battled with his weight month after month, doing our best to fatten him up between treatments only to see him lose it all and sometimes more during his stay in the hospital. Once again, it’s a concern, especially this past week with his lack of caloric intake. He went into the hospital weighing over 120 lbs and has dropped close to 10 lbs since being admitted. When he’s weighed, the scale doesn’t indicate a sever weight loss, but every day that he’s on fluids bloats him, so the scale is hardly accurate until he’s been off of them for at least a day. Making matters worse, being on the blasted fluids only serves to suppress his appetite in addition to what the fever itself manages to do to him.
And topping all of this off are the blasted beeping pumps!! For that very reason alone I know Chase wants to put these fevers behind him. There is nothing more annoying than being about to fall asleep when they start going off. It wouldn’t be so bad if it was one that might sound around five in the morning. I think we could both tolerate that...somewhat. However, when he’s on fluids, two antibiotics, and a bendadryl push, you’ve got four different alarms that can go off at any time. And they don’t just start blaring when the time is up. There is always “air in the line” or “line occluded” that can happen unexpectedly or mechanical issue with the pump itself. There is nothing like being in a dead sleep when you start to hear what sounds like a Mac truck backing up, but at a higher pitch. Oh joy!
Speaking of joy...let me talk for a minute about nurses, the beeping machinery, and something I like to call “Pump Beep Sensitivity” or “PBS”. There are nurses who have a keen “PBS”, some even scarily so as they manage to arrive in the room even before it goes off. Either they’ve got a timer for every patient or some kind of inner sense that it’s about to go off. You know, kind of like how animals can sense an earthquake before it happens? Regardless of how they do it, these are the nurses we L-O-V-E and our favorite nurses have a sharp PBS!
However, for every couple of nurses with a great PBS, there are those whose PBS development seems to be stunted, in severe need of further development, or sadly, irrevocably broken. These are the nurses that you have to call for a beep every single time. These are the nurses who when you call them, they don’t tend to show up in a timely manner, meaning that I have to hit the short-lived silence button on the pump quite a few times before they arrive. And, from time to time, you get a nurse that you have to call not once but twice before they show up....or someone else shows up to take care of it for them.
Now, for those of you who may be (or have been) nurses or who have family members who are nurses, please know that I completely understand and am aware that Chase is not their only patient. I know that even for our best nurses, there are times when they have a rough day or night and find themselves running from room to room. I greatly admire our nurses as it is a job that I could never do. The nurses that I’m (light heartedly) fussing about are those who seem to have a chronic issue with their PBS.
Much to our chagrin, Chase ended up with a couple of these PBS challenged nurses during my last stay with him at the hospital - both day and night shift. There is nothing like calling a nurse at five in the morning and waiting....and waiting....and waiting some more, and then calling yet again to inform the receptionist answering the phone that, “we’re still beeping,” as sweetly as I can. Thank goodness I’ve become more brave (or brazen - take your pick) about messing with the settings on his pump! I found out how to manage the volume level!! Woo-hoo! I could certainly kick myself for not messing with his pump volume last year, but that was then and now I have the power to turn the sucker down. Granted, the first beep is still extremely high pitched, but after that one sounds, the likelihood of dreaming that a Mac truck is going to back over you is greatly reduced!
But there is great news!! In spite of the beeps, Chase had a wonderful day this past Tuesday (the 16th). Due to his fever, he slept in rather late and I was a bit worried that I may not be able to rouse him from his bed that day. However, Beth, the Music Therapist at CHOA, popped her head in around 12:00 and mentioned that her drummer friend would be coming at 2:00 to give Chase a lesson!! I think I may have mentioned before that one of Chase’s purchases during his Make-A-Wish Best Buy shopping spree was a drum set. However, he doesn’t know how to play, so the set has remained mostly untouched as a result. When Chase got back in the hospital and I realized there was a new drum set in the teen room, I was so hoping that Beth might be able to teach Chase or at least arrange for someone to come by and give him some tips.
Even with this news, Chase seemed less than excited, which worried me. I let him sleep in a bit more, but insisted that he get up and get cleaned up - with actual water and soap not simply Axe spray - since someone was coming to give him a lesson. At two, he was ready, but extremely weak. Between the fever and lack of appetite, Chase did not feel comfortable walking on his own, so with my arm around his waist, we made our way down to the Teen Room where we met Beth and her drummer friend, Bill.
Bill, it turns out, has known Beth for about six years. He is a professional drummer with, get this, 42 years of experience! He started drumming professionally when he was fifteen. Bill, bless his heart, is a wonderful man! He shook Chase’s hand when he introduced himself, and let Chase know that he, not too long ago, spent several months in the hospital, so he understood how it was for Chase to feel exhausted and ready to break out. I noticed Bill was using a cane while he walked and he revealed that something had happened to his leg, which had halted his drumming. He has had to reteach himself how to drum (from the waist down) as he can no longer use his right foot with the foot pedal on the kick drum. For me personally, the fact that Bill has had to overcome some personal adversity to continue drumming was very inspirational to me, and I think it his own struggle helped him connect to Chase as well.
But on to the lesson itself, Chase had an absolute blast!! He went in shoulders slumped, fatigued, unsure if he was even going to like it or have any fun, which he admitted to me later. But as the lesson progressed, it was like watching a different kid emerge - smiling, more energy, his body moving to the music. I knew Chase had some natural rhythm since I catch him making up these rapping rhythms using his mouth and also doing what I call “beat boxing”. However, I wasn’t sure how quickly he would take to drumming itself, but he not only surprised me but Bill, too. I had no idea how much coordination was involved either - crossing hands to play the snare drum and cymbal, AND use the kick drum at the same time? But there he was after a few minutes of instruction doing it. And bless Beth who had her electric keyboard in there as well to play some songs for Chase to drum to.
After a while, Chase got up from behind the drum set and handed the sticks to Bill with the request, “I want to hear you play something awesome.” And he did. Bill and Beth played a bit together, some jazz and some rock as Chase and I sat by amazed. What an awesome time we had and it certainly set the mood for the rest of they day for Chase. We both thanked Bill profusely and he told Chase that he would be more than happy to come back and continue giving him lessons, too. Not only are those who work at CHOA wonderful, but the volunteers never fail to amaze me. I don’t think Chase stopped smiling after that lesson for quite some time.
But the day wasn’t quite over yet either. Later that afternoon, Child Life organized a small poker party (Black Jack and Texas Hold’em) downstairs - no money involved though, which was too bad considering that Chase ended up winning!! I believe the best part of that game was the fact that he walked (with my assistance) downstairs to play and also got the chance to meet a couple of other teens on our floor, one of whom is a boy named Bradley who is a couple of doors down from us.
After I left on Tuesday, my mom reported that Chase and Bradley started hanging out quite regularly in the late afternoon and evenings in the teen room. It’s been wonderful for Chase to have another patient near his age on the floor! Over the seven months that Chase was in and out of the hospital, he rarely had contact with other teens and when he did, they typically were only there for a day or two before they went home. But this go around, there have been quite a few kids his age around most of the time, and what a difference it has made for him, too! Chase has been willingly getting out of bed and getting cleaned up so he can meet with Bradley. It does my heart good to have him get out and be active. It’s so easy to just stay in bed and sleep and submit to the entire horrible situation. And he has had days like that, but this week with the fever waning, he’s really taking advantage of the opportunities that he’s had, and it’s definitely lightened my heart!
They did start Chase on TPN this week, which is liquid nutrition through his central line. It isn’t anything you want to be on since extended use of it can actually be hard on the liver, but they didn’t want him to lose any more weight or muscle than he already had. Even with the TPN, he has started to eat more. His taste buds have been altered a bit, which is normal, so he’s not really into hot food right now, mainly bland things like yogurt, but I expect his appetite and taste buds to right themselves as they did last time.
Per the clinical study that Chase is on with the Clofarabin chemo, on Thursday, he underwent a bone marrow aspiration, which was Day 21 for him in the hospital. Last Tuesday, not long before I left for home, Dr. Cooper stopped by to see Chase (who was out playing Poker at the time). We spoke a bit about the upcoming bone marrow aspiration and the different scenarios that would occur based on the results. If the Leukemia is progressive, meaning his the blasts in his bone marrow are the same or worse, then they will most likely take him off the study and try a different chemo treatment. If he’s in full remission, then he’ll be handed over to the transplant team. If he’s had a partial response, then he’ll have another round of the same clinical study chemo to get him into remission before transplant. Then there’s the last scenario where he’s not completely free of blast cells, but the saturation is 5% or less. They can consider that to be a remission and hand him over to the transplant team, but obviously a full remission is what we’re aiming for.
Dr.Cooper did say that Chase has responded extremely well to the Clofarabine and didn’t experience the secondary side effects. He’s very optimistic that Chase will be in remission when the results come back. Also, Chase will most likely have another bone marrow aspiration on Day 28, which will be this upcoming Thursday.
David and I did meet with Chase’s Bone Marrow Transplant doctor this past week. Her name is Dr.Haight (pronounced “hate”). She was extremely nice and went over the basics of what we can expect from the process both for Chase and for William. I have actually been a bit more concerned about William’s role at this point as he is very anxious and nervous about the whole thing. He almost passed out on my while giving blood to see if he was a match. What she told us is that he will be knocked out. I know that will be welcome news for him because that is exactly what he’s been asking for, too.
We were given a handbook for BMT, which is rather thick and contains all kinds of rules and procedures for Chase’s care and recovery. I had heard bits and pieces of what it would be like from Monica and from Robert, and the handbook along with Dr.Haight confirmed what they were saying. We’re so used to bringing in outside food, fast food, and pretty much doing what we wanted, but all of that is going to change. I’ll go into more of the specifics regarding the restrictions at another time, but we will most definitely have to change what we’ve done in the past regarding food.
What was a surprise is that it sounds like Chase will have to take temporary housing at the Ronald McDonald house after he his released from Egleston. He will be required to return to CHOA anywhere from two to three times a week after his release, which could go on for anywhere from 4 to 6 weeks depending on how quickly his counts recover. During that time, he will be extremely susceptible to anything and everything and keeping him within close proximity of the hospital will be a priority in case he does get sick.
But on to the best news of the week....
Chase is now HOME!!!!! Chase is now HOME!!!!! Chase is now HOME!!!!!
Chase is now HOME!!!!! Chase is now HOME!!!!! Chase is now HOME!!!!! Chase is now HOME!!!!! Chase is now HOME!!!!! Chase is now HOME!!!!!
He went two nights without a fever so after 24 days and 23 nights, he’s home and loving it!! He does have a clinic appointment this Thursday for another bone marrow aspiration, as I mentioned earlier, but until then he can relax, spend time with William, and give Maya all of the attention that she’s been missing from him.
Until we hear about his test results, we won’t know when he’ll have to be admitted again or whether it will be for his BMT or back for another round of chemo. So, until then please pray that his marrow is clean and ready for transplant. Although none of us is looking forward to that next step, I know Chase would much rather be heading for BMT than another month of chemo and count recovery before he can take that last step.
Thank you again so very much for keeping Chase and the family in your prayers!! As soon as we hear word of his test results, I will post those.
Oh, and please be sure to check out the pictures of Chase and Bill drumming, too!! I have some video that I’m working on as well, but I need to edit it before posting.
God Bless!
Caroline
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