No wonder he doesn't want any hot food!

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

You know something is really wrong when...

Posted Mar 15, 2010 9:09pm

You know something’s really wrong when you see a team of doctors and nurses running down a hallway and toward a patient’s room. I vividly recall my first sighting of a herd of green scrub colored medical personnel sprinting just like that the day after Chase was admitted to the NICU last year. It certainly makes your heart stop for just a second, even if you know they’re not running to your child’s room.

Unfortunately, I got to see such a team running into Chase’s hospital room Sunday afternoon! But before I get to how that happened, let me give you a recap (based on emails from my Mom, Glenda) since last Tuesday when I left the hospital.

You may recall that before I turned over the reigns to her, Chase had spiked a fever of 102, something that I do not recall him doing since he was in the NICU last year when he hit 104 after beginning chemo. Fevers, as I’ve stated before, are a fact of life after your counts hit the bottom of the barrel. Without ample white blood cells to fight off infection, you’re vulnerable to even bacteria found in your own body.

The night I left, due to the fever, Chase unfortunately got sick around three in the morning. I knew he had not eaten anything, in probably 24 hours, so when I heard that he had thrown up, I cringed. He’s even mentioned to me since then that if he has to throw up, he’d rather do if after eating or drinking than anything else, because otherwise it hurts.

His fever continued to spike and recede (with Tylenol) again and again over the next few days. He had a couple of episodes of rapid breathing, like he did the day I left, which can be attributed both to the fever and low red blood cell count since they carry oxygen. That also can contribute to nausea, which led to him getting sick again the following night. Just an aside here. I love being with William at home, but knowing Chase is so ill at the hospital makes me feel guilty for not being there. I know my mom is taking great care of him, but it’s still difficult. I tend to feel that way no matter whether I’m at home or at the hospital, but it’s doubly awful when Chase is sick.

Thankfully, Thursday he received some much needed hemoglobin (a blood transfusion). My mom mentioned that he was breathing much easier after that and had a bit more color to his complexion, too. The fever has left him really weak though and completely without an appetite. By Thursday, he had eaten less than 500 calories since Monday night. Although he did gain a bit of weight after eating so well over the weekend, that gain is no doubt gone. It’s difficult to tell his real weight though since he’s back on fluids. They always make him appear to weigh anywhere from two to four pounds more than he actually does and it takes about a day of being off the pole to get a true weight.

By Friday, his fever appeared to cease spiking and he had some periods in the afternoon where it was actually within normal ranges. That’s typically a sign the fever is dissipating and will be gone. Or at least in the past that’s how it has worked. In spite of that, they were discussing whether or not to begin TPN, which is intravenous nutrition. It’s definitely not the ideal way to get your food and nutrients, but until his appetite picks back up, it’s our best option. The last time Chase had TPN, last September, it gave his appetite an eventual kick start that allowed him to get off of it after less than a week.

Saturday, unfortunately, wasn’t greeted by a feverless day. In fact, his fever spiked again back up to 102 late Friday evening into Saturday. It’s really frustrating, because all of his blood cultures have come back negative, which is great because that means no infection. However, it also leaves us in a very frustrating position of wondering what the heck is causing the fever! Even Chase is frustrated and sick of it all.

I knew he had been mainly sleeping the entire week, but I was hoping he might perk up a bit once I got to the hospital, especially since I brought a movie he had been wanting to see along with a surprise present. When I got there, he looked pretty pitiful. I could see in his eyes that he felt completely miserable. There was no other way to describe it, and I felt sick for him. All I wanted to do was crawl into bed and hold him, too. His eyes described it all, and to top it off, I think they may have recently given him benadryl.

When he’s tired, but trying to still stay awake, he tends to keep is left eye open and his right eye closed. I tease him that he looks like Popeye. Even he doesn’t know seem to be aware that he’s doing it or why, and I can’t help but chuckle when he does it. He was trying to stay somewhat conscious and talked with me while I unpacked everything. But he really woke up when I handed him the N-Strike Recon CS-6 Nerf gun that one of the Media Specialists in my district sent him (Thanks Elise!!).

Oh, and what a hit it was!! He had complained a couple of weeks ago about losing a similar gun to another kid at Bingo, and to add salt to the wound, the other child wasn’t even a patient! Turns out the CS-6 could wipe the floor against just about any other gun, including the one from Bingo, which had him grinning from ear to ear. For the longest time he didn’t even open the box, quite content to just hold it and admire the pictures on the outside. To get a feel for the size of this thing, be sure to see the pic of him and the gun in the photo gallery.

Ann, his nurse for that day, was even getting Chase to smile by telling him stories about all of the pranks other patients had played on her and other unsuspecting nurses. There was a definite glint in his eye as he listened, and I can only imagine what he was thinking and how that new gun might play a part in it. Thankfully, I have not been a subject of target practice. I did create a crude looking target that I taped to the cabinet in front of his bed. He was delighted and I was surprised at how accurate it was - the gun, not the target :) I have no idea what plans or ideas may be stirring in that head of his, but I can tell, even as bad as he feels, that he would dearly love a few live moving targets to shoot.

After everything was unpacked, I sat on the sofa in the room, but was soon beckoned by Chase to come sit with him in bed. I kind of figured that was coming, but didn’t want to ask him if he wanted me there. Begin 14, it’s not exactly cool to be cuddled up with your mom, but that night he didn’t seem to mind. At least he didn’t until in walked Robert for the night shift. Chase made some comment like, “Don’t you make fun of me.” Which to Robert is like giving a drag racer the green light. Chase would have been better off not saying a word because Robert started in on the, “Awww...look at Chase all cuddled up with his Mommy,” and then some. From my vantage point, I couldn’t see his face, but I knew he had to be turning red. Embarrassing Chase is just too much fun.

We ended the evening by watching the movie Old Dogs. A nice little bit of light hearted entertainment, and for Chase the whole Seth Green and the gorilla scene iced the evening. I can’t begin to explain how wonderful it is to see him smiling and hear him laughing even as miserable as he was.

Sunday, things went far differently. Before I was even fully awake, I heard one of the doctors talking to Chase about a CT scan. Ann, his nurse, told me a short while later that due to the extended time of his fever, they wanted to do a CT scan on him to see if perhaps there was any fungus causing it. Apparently, the blood cultures they run don’t work on fungus and a CT scan is the only way to detect it. Chase has never had a CT scan, which seemed to surprise everyone around here. Given that he was inpatient for so long last year, they expected him to have had at least one. Because he’s a CT scan newbie, we had to watch a little movie about it that honestly does a heck of a better job scaring you than being reassuring. Chase went from ignorant of the process to being pretty sure he didn’t want anything to do with it.

Because every effort is made to get him up and moving, we walked the short distance to the elevator (right before the Aflac lobby) to go down one floor for the scan. That short walk about did Chase in. He had to stop and sit for a couple of minutes to get his breath back. Thankfully, the rest of the walk, once we hit the 2nd floor, was even shorter, but he had to keep his arm around me for support the rest of the way.

The scan itself lasted no more than 15 minutes. The machine was pretty cool though. You’ll have to check out the picture in the gallery of Chase inside of it. If he was still worried about the procedure, which he said he wasn’t, it was overshadowed by the fatigue from the short walk. At least he was able to lay down and relax. The solution they use to illuminate anything in the scan turned out to just be really warm when it went into his CVL. According to the video, it could potentially burn, but there was no discomfort. And to make him even happier, they took him back in a wheelchair so he wouldn’t have to walk.

Instead of waiting for the results of the scan, they decided to add a more powerful antibiotic that targets a broad range of fungus called Ambisome. As with many other medications, there are side effects and this one was no different, one of the major ones being chills and shivering. Benadryl would be given along with the medication to counteract it though. Can we never get away from the blasted benadryl???

Ann had Chase hooked up to the bendadryl first, and as I was standing by his bed, she started the pump with the antibiotic. Chase had been talking, but stopped suddenly and his hand went to his throat. His face was pinched, went red, he could barely talk as he told her that it hurt to breathe. She reached back for the pump and told me to hit the nurse call button. She yelled for a couple of nurses, a doctor, and epinephrin. Although Ann was keeping her cool, Chase was visibly frightened and I felt like I was about to be sick.

In less than 20 seconds that herd of medical professionals I spoke of earlier came busting through the door - two doctors (three if you count Dr. Olsen who stayed in the hall), and three other nurses in addition to Ann. Having no idea what they would need to do, I quickly backed away. Chase had turned clammy, his face lost its color, and he broke out in a cold sweat. And me? I haven’t felt that helpless in quite a while.

Thankfully, Ann turning off the pump as quickly as she did and with benadryl already working, there wasn’t a need for any further intervention. Only 2.55 CCs managed to enter into his system, which is equal to about half a teaspoon, but it was more than enough to cause his airway to constrict so breathing was painful. Chase and I were still pretty shaken by the whole experience, but he’s fine and they’re now using a different medication. They’re not calling his reaction an allergy, but it will be added to his red bracelet regardless.

The rest of the day he slept and slept, which was about all he could do against the fever. That and he’s got this annoying little cough that started a few days ago. It’s mostly dry, but fairly persistent and makes getting to sleep not so easy. Just to show you how sick and weak he felt, some of the larger dogs were downstairs visiting, something Chase always enjoys going downstairs to do, and he didn't even consider it.

Monday, today, has definitely been MUCH better!! The fever appears to be history and as of seven o’clock tonight hasn’t plagued him yet today. Praise the Lord!! He’s still very weak, but he is getting around better and is asking for food!! They still have him on vancomycin, that new antifungal med, and benadryl, which he will remain on until he’s been fever free for at least two days I think. Colleen confirmed that his CT scan was negative, another blessing, but they will start him on TPN tomorrow. He gained quite a bit of weight and muscle mass while at home, and they want to prevent him from losing it. Although his caloric intake has been very small today, everything he has been food he has asked for, not offered by me. When he’s asking for food, that’s an incredibly positive sign!

It’s hard to believe that just this morning he didn’t look much better than he has since last Tuesday, but now he’s watching TV and smiling. Oh, and he also voluntarily walked down to Bingo, which is no short distance either. He kept an arm around me for support, but had he even walked a quarter of that distance I would have been thrilled. I’m praying the fevers are behind him and that all we need to do is wait for his counts to rise so he can go home for a nice break before BMT.

Speaking of BMT, David and I met with Dr.Haight (I think that’s how you spell it and it’s pronounced like ‘hate’). She will be Chase’s primary BMT doctor while he’s under their care. She was very nice and was able to answer all of our immediate questions, most of which (from me) were about William’s part in this. He’s very anxious about how they will harvest his bone marrow, but it appears as though he’ll get his wish to be knocked out. I hope that will ease his mind. Speaking of William, I spoke to him today and he wanted to know how much longer until Chase would be done with all this “stuff”. There was a definite tone of irritation in his voice, which said to me that he wants his brother home just as much as Chase wants to be there.

So for tonight, we’re just going to relax, enjoy being fever free, and hopefully get another three or four hundred calories in him. Thanks to the anonymous snack gifter who struck again, he’s got fresh Twinkies to much on!! Thank you Snackerator :)

And thank you everyone for the continued prayers and support!! We’ve been so blessed to have all of you lifting Chase up!! I posted a few new pics, including the CT scan photo, so be sure to check them out.

Thank you and God Bless!
Caroline

3.9.2010

Posted Mar 9, 2010 10:10pm

First off, sorry for the delay in the update. Chase tends to get cranky and threatens to turn off my Mac if I’m on the computer longer than he likes. Since I’m also trying to get some work done while up here, that of course takes precedence. And once again, I’ve exceeded the character limit, so this will be broken down into two updates. I’ve been writing some each day or trying to, but this post will start with today and move backward.

I’m not sure what it was about last night, but Chase and I both had a horrible time getting to sleep. We didn’t go to “bed” until nearly 2 am, but even the dark didn’t stop us from conversing. I would tell him to go to sleep, and then about three minutes or so later, he’d start talking again. Unfortunately, we’ve gotten into a haywire schedule of staying up fairly late and sleeping in. Although at home, we’re the type that loves sleeping in late, so making sure I get myself up and going in the morning while I’m here is anything but pleasant or easy. But, in order to get him up and eating breakfast by high noon, I’ve got to get my own ducks in a row first, so to speak. Yes, I said breakfast. I’m not sure what it is about either of us, but even though we’re far past the traditional breakfast hours, we don’t go straight for lunch.

But I digress...back to today. The night-shift nurses generally take blood samples from him before their shift ends so the doctors will have his counts by the time they do morning rounds. Dr.Cooper warned on Sunday that he would probably need blood products within the next day or so, and today his blood platelets dropped enough for him to require an infusion. The process itself is no big deal, but since he tends to break out in a red, itchy rash on his body when he gets them, he has to be pre-medicated with benadryl before hand. I hate benadryl for him because it never fails to knock him out. Sure enough, our lack of being able to go to sleep last night and the benadryl have done a number on him.

About 2:45, I attempted to wake him up and felt his face. It was hot. He’s been bundled up in a blanket, which I thought perhaps was affecting his body temperature. However, when your white blood cell counts are in the basement, fevers and sometimes infection are inevitable. So, I took his temperature under his arm, which I knew would be a bit off and would have to be verified by the nurses, but I wanted to see if I needed to call his nurse in. 38 degree Celsius ( 100.4 Farenheit ) is a temperature we want to avoid. Having said that, when I watched the digital read out on the thermometer rapidly move up to 37.9 I cringed. Then it went up to 38...38.1...38.2. Each fraction of a degree made my stomach knot up. He topped off at 38.5 (101.3), so I went out to the nurse’s station to tell Laurie. His temporal temperature had risen from 37.2 this morning to 37.5. She re-checked his armpit temperature and it was still 38.5. Given that, she drew more labs and they ordered fluids and vancomycin, which is an antibiotic known around here as simply vanc. Chase is vanc sensitive, meaning he can break out in a rash from it, so guess what? More benadryl!!

It’s not like we haven’t been through this drill before, but I’m so terribly disappointed for him. He’s been in great spirits and getting out and about in the hospital, and definitely eating well. I especially thought his appetite was encouraging and was hoping that eating trend would continue since he’s lost 8 lbs since he was admitted on February 25th. Going on fluids tends to rob him of his appetite and with benadryl in the mix, he’ll sleep, making it doubly difficult to get any real calories in him. I hate seeing him like this. He’s absolutely wiped out and doesn’t look like he feels good whatsoever. He tried to stand up to go to the bathroom and didn’t feel he had the strength to walk in there even with my help.

I left at 7pm tonight and his fever was up to 39 (102). My mom, who is with him now, called at 9:30 and thankfully his fever is now down to 99 and he was able to get up from the bed and go to the bathroom. Hopefully the worst of his fever is behind him and he’ll soon get an energy boost from a blood transfusion.

3/8/2010

Speaking of calories and eating, he fussed at me last night for giving him fat-free yogurt. I actually brought it up here for myself, but he asked for some and was none too pleased with what he received, grumbling something to the effect off how was he supposed to gain any weight if we gave him fat-free yogurt? I made sure when I ordered room service last night to include strawberry yogurt NOT fat-free. He snatched it off the tray post haste when it arrived.

The thing about Chase is that he rarely asks for food or drink. You literally have to put it in front of him or sit next to him with a dish that smells really appealing so he’ll eat. I’ve found that watching TV with him in bed while bringing a small bag of chips with me has been a great lure among other tactics. Yesterday, I went downstairs to grab some lunch for us both. They had beef quesadillas on special, so I ordered one of those and a grilled chicken sandwich with fries with the intent on keeping the quesadilla for myself. Turns out I shouldn’t have counted my proverbial chickens because when I offered him a choice, he took the quesadilla and ate 3/4 of it....THEN he went after my fries. At least I got a few bites of what he didn’t finish though.

I’ll go ahead now and apologize in advance for getting into “potty talk”, but I think you’ll appreciate the story once it’s done. As I said earlier, we have to use tactics with Chase to get him to do the things he should be doing. Right now, one of those “things” is to have a daily drink laced with miralax for constipation (remember, I already warned you what this would be about). Constipation is one of the lovely side effects of chemotherapy. We’ve been through the miralax struggle before, but Chase claimed that he never liked to drink it because they mixed it with grape gatorade, which he never really cared for. So,we thought that mixing it with tea or fruit punch would entice him. At first it did, but after a couple of days of it, his appetite starting to pick up, which then started his digestive system working again, that ended up turning him into a bit of a gas factory. Around these parts, they don’t really sympathize with gassiness. They just want to know if you’ve pooped. Not just IF you’ve pooped, but when was the last time and what was the consistency. Gross talk I know, but we’re used to it around here. This and urine output.

Well, a couple of days ago, Chase had a nurse named Stacy. I don’t recall if we’ve had her before or not, but I really, really like her. She’s another one who will push Chase, so he’s been responding well to her. That and I think Rebecca may be coaching her a bit because she seemed to know how to handle him pretty well. Stacy was his day nurse a couple of days ago and then his night nurse last evening. When she came in to do his vitals, his “spiked” fruit punch drink was STILL on his table untouched. How do I know he never drank any? Because the little bit of paper wrapping on the end of the straw was still there. Chase wanted to avoid the gas, so he avoided miralax.

Remember those tactics though? Not thirty minutes later, Chase said he was thirsty. Knowing he had a Nestea in the fridge that my mom had bought him, I went to the family kitchen to get it, but made a detour to the nurse’s station for a packet of miralax. I told Stacy that I intended to secretly mix it into his tea, and a grin broke out on her face. Another nurse Chase has had who often jokes around with him, told me be sure to mix if for a while so it won’t be gritty. Great advice! Not only did I put miralax in that, but I put the rest in the bottle with the remaining tea.

He drank all of it and suspected nothing!

Stacy came in later and asked with a slight smirk if he had had anything to drink. I replied, yes, the entire bottle. After Chase is completely done with all of this I’ll confess, but for now I’m guilt-free!

Monday was certainly grand central station around his room. He had a team of no less than 4 dermatologists who came in to check on his little toe where they had taken the biopsy and to look at the other sores on his feet. The biopsy proved inconclusive. Lovely. It wasn’t cancer related yet once chemo started, they’re going away. Dr. Cooper said it could be that white blood cells were accumulating and causing the issue and now that they’re going down, the sores are going away. Although I’d much rather have a definitive answer, knowing and seeing that they’re going away is still a relief.

He also had Callie from Physical Therapy come by. She’s new to us and when she first attempted to get Chase out of the bed, he really resisted. I was out in the hall with Beth from psychology when lo and behold, out comes Chase with Callie!! I was so happy to see him up and moving around. He ended up walking around the nurse’s station for 15 minutes. They had a great conversation going, which was about some hikes she’s been on in exotic locations, and that kept him walking with her for 15 minutes.

Chase also had about seven others who dropped by within a 20 minute window as well. Not sure what was in the water Monday, but they all for some reason, descended at one time.

Later that afternoon, there was a little carnival of sorts downstairs. Chase took a leisurely bath and then we headed down there together. Most of the games were geared for younger kids with the exception of the Wii via LCD projector and a game of carpet hockey that Chase really got into. They had a net set up, field hockey sticks and a ball instead of a puck. Although he had to take frequent breaks because of fatigue and to catch is breath, he had a great time playing against the volunteer, me, and another patient. I even ended up playing goalie for her after Chase had to sit down.

After dinner we finally got around to watching Cirque du Freak: The Vampire’s Assistant. Chase has read almost every book in this series, so I was very curious to see how he would like the movie and what his take on it would be. I’ll admit that it was better than I thought it would be, but the scenes with the spider??? My skin is still crawling to think about it. I even caught Chase raising the blanket up a bit to his face. Neither of us are spider fans. Stacy came in after that particular scene, but we told her about it, and I shared how Chase can’t stand spiders. Of course, he had to tell the story of the wolf spider in his room and how when I struck it FOR him hundreds of babies scampered off the momma’s back all over his carpet. Each time he tells the story, the number of babies increases exponentially. There were more like thirty. He claims I should have been able to see the babies, but truthfully I had no idea. That and with him having a fit for the spider to be killed, I didn’t take the time to investigate. I doubt he will ever forget that experience and he certainly hasn’t tired of telling the story either.

Sunday was an excellent day around Egleston for Chase. His Scout troop made plans to visit him. We honestly expected maybe five kids, and Chase was very excited about seeing the guys no matter how many showed up. Jason came and got us in the room and we walked down to the Aflac lobby. The first thing that struck me was that he was in his full dress uniform. If she was in his Class A (hope that’s right) that meant the rest of them were, too, which I thought was pretty cool. As we turned the corner that led to the hallway toward the lobby, there were a lot more than four or five kids. There were half a dozen and quite a few of the Scout leaders. Please see the pictures that I uploaded from the visit. My favorite I think is the one of the Scout leaders taking pictures of the boys. For some reason, the sight of them just struck me as humorous.

But back to the visit, I could tell how thrilled Chase was upon seeing how many had taken time out of their Sunday afternoon to get into their uniform and come down to see him. He felt pretty tired and weak since his counts are dropping, but to look at him, he had found a bundle of energy. He was animated and very talkative. Although he had that blasted mask on, I could tell he was smiling. His eyes always give him away.

We were both just expecting a visit, but they had brought him some goodies, too, which took him by surprise. Everything was of course, Boy Scout themed from a Monopoly game, a Rubic’s cube, to flashing buttons all three of which celebrated the 100th anniversary of the Boy Scouts. He was also given a dream catcher that is now hanging over his bed. They also gave him a set of Boy Scout figurines. Chase chuckled when he showed them to me. “You see the one with the bow and arrow? You can set him up so he’s shooting the Scout Master.” One of his fellow Scouts shared that with him and I shall not divulge the boy’s name. I also won’t divulge which Scout Master Chase or I were thinking of either. Not that we uttered the name out loud mind you.

As I close this and get ready to completely crash tonight, I want to once again express my deepest gratitude to everyone for your prayers and support. I would also love to extend my heartfelt thanks to the Cub Scout troop that feeds Troop 774 for the gas cards. They’re greatly appreciated!!

God Bless!!


Caroline

Day 5 Chemo: 3.2.2010

Posted Mar 2, 2010 7:25pm

I'm very pleased to report that last night ended uneventfully. Yay! It's amazing how relieved you can feel and how much you celebrate your child not vomiting on a daily basis. I so look forward to the day when I don't have to think of that as an important milestone to reach.

Oh, and I need to correct something Chase said yesterday about the blond Miss.Georgia contestant. I said, "Dumber than a bag of rocks" (I think), but what he actually said was "Dumber than a sack of nuts". I stand corrected.

In spite of yesterday ending without him getting sick, today however, was a bit wishy-washy in the beginning. This morning he refused to eat or drink anything and pulled the blanket up over his head and left it there for a couple of hours. I had to get onto him when he wouldn't even pull it down to speak to Dr.Cooper or Beth (his psychologist). Normally, he doesn't have a problem talking to either of them. Dr.Cooper assured me his avoidance technique wasn't new to him, so he didn't take it personally, but Chase didn't have an excuse other than he didn't feel like doing anything or talking to anyone. In my book, that's not an excuse at all unless he's truly feeling ill, which he wasn't. I tend to make him so happy with me when I pull the blanket away from him.

Dr.Cooper did have some great news for me today. He said they wouldn't start paying too much attention to his counts until Thursday, but that a peripheral look at his blood (I guess from this morning) showed NO sign of leukemia blast cells!! Amen!! That doesn't mean that his marrow is clean, but if he's gone from about 15% saturation to 0% since last Friday, then I'll certainly celebrate that milestone.

One thing that I believe I have mentioned before is the difference nurses around here make. We've had Marlene several nights since we've been here, and she's shared a few more of her stories with us that are always good for a laugh. You have to really appreciate a person who can laugh and let others laugh at her expense. She's such an uplifting person, too, which is why we love having her so much. Unfortunately, we haven't seen Rebecca yet. I think she may be on BMT duty right now, but hopefully we'll see her soon. Robert has been around, but wasn't assigned to us - until today! Yay! He's always reliable for a good kick in the pants for Chase. He puts up with nothing and told me to tell Chase that his past few days of having the "wimpy" nurses was over, and that he needed to get up and get moving around. He even got Chase to do his Biotene mouthwash! That was the excuse Chase gave me for why he couldn't eat or drink anything this morning, to which Robert replied - "That's bull and he knows it." See why I love this guy??? That's exactly what Chase needs, too. Nurses who push him and won't put up with him being so complacent...lazy....lethargic....apathetic - take your pick. :) He came into the room and said we needed a large can of Pam to spray under Chase so we could just slide him right out of bed. That got a smile out of him finally and he began to engage a bit in conversation.

Not long after Robert started his chemo, Hartley dropped by. For those who recall that name, she's the physical therapist Chase worked with quite a bit last year. You know...the one he thought was cute and made the mistake of telling a nurse about it (probably Robert) and then the whole staff knew afterward? Well, lo and behold, he actually got up for her and went to PT! Yep, I was pretty shocked. I expected him to balk. Instead he asked me for his Axe body spray and to help him with his shoes since his little toe was tender from his biopsy yesterday. I gave him a couple of bucks so he could buy himself a drink on the way back if he wanted. Chase doesn't care too much for going downstairs to the cafeteria, but I figured giving him some money for the vending machine would be too much for him to pass up. I was right. He came back with a bottle of water to which I added a packet of Propel Kiwi-Strawberry mix. It was a hit and he's almost downed the whole bottle. Although he hasn't eaten anything yet today, getting him to drink something is just as important, especially with the Clofarabine chemo he is receiving.

And later this afternoon, he went to the Teen Group activity. Can I get another woo-hoo?? Apparently, they're tie-dying. Robert asked for a pair of boxers. Ha-ha. I have no idea what he'll come back up here with, but I'm so pleased he went down there. Christina, from Child Life, came by to get him. When she did, she told him that the band he had done some karaoke singing with before was here, too. Unfortunately, it conflicted with the teen gathering. But, she did tell him that he was in their promotional video. What? Between David and me, we've signed a bunch of releases for him for this or that, but I didn't recall him being filmed for a video. Apparently, he's singing "We're not gonna take it," from Twisted Sister and they're using it as part of a promotional video for fund raising. She told me that she's asked for a copy and I know I've got to get my hands on it as well. The last time Chase was in the hospital, he started getting into 80's music and that was one of the bands whose songs he downloaded to his iTouch. I think it was Chase's first night here that we both got into some impromptu karaoke singing and that was one of the songs he queued up. Chase was pretty amazed that I could recall some of the lyrics from the older songs. Let me tell you, I didn't know I knew them either. It's pretty funny how some lyrics will stick with you over time. Not the whole song mind you, but at least a few words or lines from the chorus.

He's pretty wiped out right now, but then again, he's had an active day today, too compared with yesterday. Robert started up his AraC as I typed this and I'm hoping he'll sleep through it as he has the past couple of times. This is the last one until he goes in for his bone marrow transplant. Amen!! After this, it's just a waiting game to see when his counts will bottom out and rebuild, as well as praying that he doesn't get a fever or any kind of infection. In the past, he's never had an infection, but he's been feverish. I'll take the latter if we have to as long as there's no infection.

God Bless and thank you as always for your support and prayers!!

Caroline

And it Begins...Part I

Posted Mar 1, 2010 9:08pm

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