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    Sunday, December 30, 2007

    Time

    Well, it's been over 48 hours without a fever, woohoo!

    Dalynn and I had the night off (my mom and sister stayed with Cole) and got a chance to go to church this morning. I could tell how much time had passed by how much bigger all the kids at church seemed. It was wonderful to see our church family and we got a chance to talk to them as a body, as well.

    Our last service of the year was a continental breakfast style get-together and it was an ideal way to catch up with everyone. I thoroughly enjoyed it, and my heart swelled with gratitude for all of these people who have done so much for us.

    We headed back to the hospital around 3.

    Time seems to move differently in the hospital. I can't quite figure it out, but I think it has something to do with living one day at a time. You don't really make plans while you're here, you just wake up and all you consider is the day that lays in front of you. You live the day as best you can and when night comes you tend to spend time contemplating what went on in the day that just passed. Then you go to bed, probably earlier than you would at home. The next day will roll around sooner than you probably wish, at least from a sleep perspective.

    I can't help but think of the scripture where Christ tells us to consider only today, as today has enough troubles all on its own. It's very true. To some extent, I wish I could have this hospital mentality at home. Maybe I could just place my faith in the Lord and live the day at hand to its fullest. Maybe I could just trust that the Lord will see to the needs of tomorrow and let Him, instead of wasting so much time worrying about it myself (and making futile plans, hehe).

    At any rate, I know that I've lived mainly day-to-day over the past month and a half. That makes this time seem so much longer and even fuller than a regular month and a half would normally feel. Not all of it has been pleasant, but I certainly can say that I've lived more in this time than I ever have in any given month and a half in the past.

    It's an interestingly satisfying feeling.

    Friday, December 28, 2007

    There's a Fungus Among Us

    I do feel the need to apologize for the title, but it was too good to pass up.

    Cole does officially have a fungal infection. Further, a CT scan today showed that it was in his brain. Dr. Lowe (one of the oncologists) says that it is only "small spots" in his brain, though, so there is some sort of silver lining. Most likely the spots in his lungs, heart and brain are all fungal.

    The infectious disease doctor, Dr. Fisher, thinks it is aspergillus. That's not a good thing, from what I can gather, but it is treatable.

    The course of treatment will probably last for a very long time, as in months if not years. It's very hard to treat fungal infections and they have a tendency to come back. Cole will be getting two anti-fungal medications for the time being, but will eventually get moved down to one. We'll likely be in the hospital for a while, as well, as fungal infections are slow to respond (but they are also slow to grow).

    Despite all the bad news, it is nice to finally have a diagnosis (of sorts). It was pretty painful when no one knew what it was and folks kept waffling back and forth on what it could be, but no one would give us a definite answer. Now, we have a definite answer and we also have a definite way to move forward. We will continue to move on, and will continue to fight as best we are able. This really changes nothing.

    Cole will continue to get his chemo on time. He will also get periodic CT scans to make sure that the infection is being treated. Our number one priority right now is to fight leukemia as it is, by far, the more dangerous of the two diseases.

    Now, for some positive news.

    Cole was taken off of contact precautions today so we were able to go to the play room! He played for an hour and a half, standing for at least 30 minutes and even trying to walk on his own. At first he was rather shaky on his feet, but as he stood he got steadier. It was good to see him playing and having a good time.

    Also, when we got back from the PACU after the CT scan I was eating a piece of cheese. Cole saw it and decided he wanted it, so I gave it to him. He spent the next 5 minutes talking to and about the cheese, but not eating it. I finally asked him, "are you going to talk about it or eat it?" Cole looked at me, and with a very serious expression said, "I gonna talk about it".

    All things considered, our spirits are good, and we're settling in to whatever this new diagnosis will bring. I'm not feeling stressed about being in the hospital, and we're back to sharing the load, so I guess that's good.

    Thursday, December 27, 2007

    Fever City

    Cole's still running fevers, some of them high. Our infectious disease doctor, Dr. Fisher (he's filling in for Dr. Buescher) took some time to personally look at Cole's slides from his biopsy and got a surprise. He found fungus that had been overlooked previously.

    They're going to start Cole back on the anti-fungal medicine, which is something that Dalynn and I had wondered about. When they took him off of the anti-fungal medicine he started running fevers again.

    Though this is bad news, it does appear to be an answer to prayer, as well. Most of us have been praying for the doctors to have wisdom, and this sounds like a cut-and-dried case of a doctor having wisdom.

    So, continue praying and now pray that the anti-fungals wipe out the fungus wholesale.

    Wednesday, December 26, 2007

    Christmas at CHKD

    Well, it's now the day after Christmas. Christmas itself was a rather low-key event, though we had a good time.

    CHKD provided a bunch of toys for us to put out for Cole, and we brought a few of the more transportable ones from home (his new train table turned out to be too big to bring in the room, go figure!). Consequently, when Cole woke up we had a bunch of toys piled on the end of his bed. Cole was quite impressed and took to opening his presents straight away. He was quite enamored of Hungry, Hungry Hippos and a firetruck and airplane that you can take apart with a screwdriver.

    Late in the afternoon, my mom brought Christmas dinner (once again all the food was provided by our neighbors, bless them all) and we pigged out while singing carols to Cole. Cole, in turn, sang us the theme song from Little Einsteins.

    Cole continues to run periodic fevers, especially at night, but thus far the doctors don't seem very concerned about that. He's still receiving 2 antibiotics by IV, though they may discontinue the Vancomycin tomorrow.

    There's no definite end to our hospitalization, unfortunately. Cole has to be fever free for at least 24 hours, and we may opt for 48 hours just to be safe. We definitely don't want to bounce back in here again once we do go home.

    In the back of my mind is lurking the fear that there is something else that didn't get cultured and that is only being partially treated, though I can't imagine what it might be. Hopefully, this is just the baseless fear of a father for his child.

    Pray that Cole's fevers stop and that his infection is treated fully. Also pray for strength in this continued hospitalization, as we've now been in the hospital for almost 2 weeks. We're all holding up relatively well, all considered, but it never hurts to pray for what you know you'll eventually need.

    Merry day after Christmas to you all, and a happy New Year!

    Saturday, December 22, 2007

    Still Standing

    This has not been a spiritual experience. I had always quite thought something of this magnitude, something this disastrous, would mean that I'd walk in a constant reminder of the Lord's presence. That has certainly not been the case. As a matter of fact, the Lord's presence has been noticeably absent during most of this time. I can't say that there has been a sweet thing, sweet being what the Lord's presence is, about any of this.

    Overwhelmingly, I've found myself tired. Exhausted, really. This has been the most mentally and physically demanding thing I've ever done. Dragging myself out of bed at all hours and coping with a toddler that is not only jacked up on meds but made willful by them is rather tedious.

    When I've not been exhausted, I've felt altogether human. Felt. Isn't that what a "spiritual experience" is, though? It's an experience, which means it's something that must be felt. If it's felt, then it must be a feeling, and if it's a feeling, it must be subject to all that affects regular human perceptions. Perceptions are intrinsically flawed and subjective. I'll let you do the math from there.

    I'm not trying to take away from spiritual experiences, though. They can and often are the way that God chooses to reach us, or the way that we are most able to be reached by God, I should say. I've had some awesome spiritual experiences and, before this, they were the primary way that God and I communicated. They are also unreliable, though, as I've found many times when a spiritual experience was not to be had and I felt abandoned by God.

    However, I don't feel abandoned now, even though I have had a noticeable lack of any spiritual experiences recently. Quite the contrary, I feel born up by the hand of God, sustained by Him. See, in this time, I have a new proof that He is with me. I know He's there by the simple fact that I'm still standing.

    Friday, December 21, 2007

    After Surgery Update

    Cole is still doing well, and some of the cultures have already grown some Streptococcal chains. Dr. Buescher, our infectious disease doctor, says that this is very treatable and he seems happy with things so far. He also thinks it's unlikely it's a contaminant, so we might be dealing with the real McCoy.

    So, right now, all the news is good and Cole is being treated in just the right way for what they've cultured so far.

    Thursday, December 20, 2007

    Surgery Done

    Cole had his surgery today and everything went well. It took them a little longer than they expected, which was hard for Dalynn and I to endure, but in the end everything came out OK.

    We had a shock this morning when they said that Cole had the condition meningitis. I say condition because meningitis is actually a condition with many causes. It means he has an inflammation of the meningeal lining (I think that's what it's called), and the likely cause is that the infection in his lungs and heart has also infected the meningeal lining (that's the lining around your brain). It showed up as white blood cells, which were not leukemic, in his spinal fluid.

    The incredibly preliminary results are that it is a bacterial infection (as opposed to a fungal infection), which is good. It means it can be treated with antibiotics. We'll know more tomorrow once the cultures have had a chance to grow.

    I'm sure we're going to be here a while, this time, probably through Christmas, but that's OK with me, now. I just want Cole to get on the other side of this and get well, so that he can continue his treatment and beat cancer.

    As I sit and write this, Cole is sleeping soundly in his nifty bed, his pulse a low 135 and his O2 stats in the high 90s. To most of you, this won't mean much, but to us, it means all is well, at least right now.

    Wednesday, December 19, 2007

    Back to the Hospital

    Well, we're back in the hospital again. We enjoyed our one night out, kind of, but we found the hospital too irresistable, it would seem.

    All joking aside, they've finally found the reason for Cole's fevers over the past week. Cole spiked a fever of 103 this morning before we came to clinic and this prompted Dr. Owen to order a CT scan of Cole's chest. The scan found roughly 10 "masses" in his lungs, what are most likely either a bacterial or a fungal infection. Further testing, via an echocardiogram (ultra-sound of the heart) showed that Cole also has several more masses in his heart.

    The source of this infection seems most likely to be his picc line, which is not uncommon. They pulled his picc today, but thankfully were able to get a new IV stick with just one try in the clinic, so he has IV access. Pray that his IV functions properly until it is not needed anymore.

    Cole will be going into surgery sometime tomorrow morning for a biopsy of the masses in his lungs. From this, they hope to get an idea of what the infection is so that they can successfully treat it quickly.

    As a result of all of this, one of Cole's chemo drugs, vincristine, was held today. I don't know when it will be given to him, but it is a pretty major thing to completely hold a drug like that.

    Pray for Cole to come succesfully and safely through surgery tomorrow, and for the biopsy to reveal what the infection is. Then, pray for a quick treatment with no lasting effects for Cole.

    The only note of encouragement I can give you right now is that the doctors are optimistic about the outcome of Cole's treatment. Pray for wisdom and guidance for them as they continue to treat Cole.

    Monday, December 17, 2007

    Cole 1, Cancer 0

    Cole's minimal residual disease (MRD) came back today, and it was 0. This means Cole has no cancer cells in his bone marrow.

    Praise God.

    Saturday, December 15, 2007

    The Good

    While things have not been easy of late, there have been some very good things that have occurred recently. I think I'll take this time to go over a few of these.

    First, and probably most significant, Cole's day 29 bone marrow came back with 0% blasts! We are waiting on the Minimal Residual Disease, which is much more sensitive than the other tests for the final word (and praying for less than 0.1% blasts from that), but by the old definitions, before they had all the fancy tests, Cole is almost in remission. We're waiting on his counts (or good cells) to come back up. Remission means that his bone marrow is not producing cancer cells and is producing good cells. It's not a "cure", it just means that the cancer is under control.

    Another good thing that has happened recently is that we have finished with induction, stopped the steroids, and our little boy is coming back! Even while we've been in the hospital, Cole has started to rebound from the zombie he had become while in induction, due in large part to the steroids. He's laughing and smiling again, making jokes, and talking! He's talking almost non-stop again, which is much more like him. He's still eating a lot, but his appetite is obviously decreasing and his puffiness is going away before our eyes. It's breathtaking to get your child back in what is almost the blink of an eye, and I can't wait for him to make a full comeback.

    Lastly, Dalynn and I are starting to distribute the load of Cole's treatment better. For instance, only one of us (me, tonight) is staying at the hospital with Cole at night. The other is able to go home, enjoy Logan and get some sleep. We're also planning on trying to solo the clinic, though that will most likely be Dalynn to begin with, as I try and get back to a more normal work routine.

    Distributing the load may sound trivial, but it's very important. It means that we're less prone to burn-out and that we can more easily manage our daily lives, since less of our daily lives are being consumed by cancer.

    All in all, even though we're in the hospital again, things are "looking up", as Gary would say.

    Another Word From Dalynn

    Hi everyone! I hope you are all doing well and enjoying this Holiday Season!

    I just wanted to take a few minutes to say "THANK YOU"!! Michael and I couldn't have made it through any of this without you!! We have been overwhelmed by all of the support and so incredibly BLESSED by ALL OF YOU!!!

    THANK YOU for all of the PRAYERS, EMAILS, GROCERIES, FUND RAISERS, FINANCIAL SUPPORT, WORDS OF ENCOURAGEMENT, PHONE CALLS, VISITS, MEALS, MEALS, AND MORE MEALS!! You Guys ROCK!!

    Some days I check my email just to hear the words of encouragement and to know we are not in this alone! God is with us and you, all of you, are in this with us! The Body of Christ is definitely AMAZING!

    There have been many hard days since my last email, but the sliver lining in all of it is that Cole's Bone Marrow results from this Wed. reveled his Blast, Luekemia cells, are 0%!! Is God AWESOME, or what!!

    All I can say is. . .Thank you for holding our hands up and helping us to fight, endure and have victory!! To me those words do not come close to truely expressing how we truely feel, but they are all I have! Just know you are making a difference and helping us through one of the most difficult things we have ever had to go through.

    Cole is a Champ!! And he is fighting hard to kick cancer's butt!! :)

    We love all of you and so appreciate each one of you so much!

    With a thankful heart,
    dalynn

    Friday, December 14, 2007

    The New Land of Normal

    It's a pretty dismal day here at the hospital. Cole is so backed up he's now starting to vomit whenever he's given anything by mouth. It's certainly no fun for anyone involved, least of all, him. The doctors are talking about putting an NG tube down him, which is a tube that goes in his nose and into his stomach. They then will pump something called "Go Lightly" down the tube, which will clear him out in a few hours.

    The first time they suggested this, a week or two ago (last time we were hospitalized) I was adamant I did not want him to have to have it done. This time, though, my feelings have changed, and I think it's an indication of what the new normal is for us. Now, I feel that if it will clear his constipation and allow him to keep things down, let's do it, and in a hurry.

    We had a friend stop by, and he brought us some Starbucks, which was awesome. He's a coworker of mine, Anthony, and he and his wife just had a baby 4 months ago, Raymond. Raymond is quite adorable, which I'm sure he gets from his mother and certainly not from his father.

    When Anthony was here, I was reminded strongly of when Cole was a baby, and I had a sense of surreality when I started thinking about how I would have felt about this hospital room and leukemia when Cole was as young as Raymond. It would have seemed horrible, and something that must be terrible to endure. Especially having to watch my child go through it.

    Now, it is no less terrible to endure, but it is quickly becoming apparent that it is, in fact, endurable. This thing is not going to eat my soul, though it may try, and if it does try, I will simply have to resist.

    That's the new normal, I think. It has new rules.

    Rules like: Fevers are a potentially life threatening event which must be approached with the utmost care.

    Rules like: If a fever exists, then it is imperative to not go through the ER, where they do not necessarily know how to take care of your child and could inadvertently do something which can kill your child.

    I guess the new normal means I have to tolerate these rules. And, in deed, I do, and I'm starting to. I'm learning to accept many things that I don't think I've ever considered before. Like, learning how to harden my heart to my son's piteous cries when his vitals are being taken or an IV is being put in. It's not a hardening that lasts, though, it's a momentary state that allows for the betterment of the health of my son.

    This new normal is a land of strange beasts that I have never before conceived of, yet they are all made out of normal everyday events. Moment to moment, things don't really look strange, but when you look down a line of moments and realize where you're going, then things get weird.

    But, here, weird is normal. Thus, the new land of normal.

    Thursday, December 13, 2007

    Back to the Hospital

    Well, we were admitted again today. This time it's an unexplained fever which comes and gos at random. When Cole is neutropenic, which means he can't fight off infection, if he runs a fever of 101 it's to the hospital we go. This AM, Cole was running a fever of 100.9 and then a second fever of 100.4. The other rule about fevers is that if he runs 100.4 or more twice within an hour it's to the hospital we go!

    So, off to the clinic we went this morning. Dr. Owen made the decision to admit us this afternoon because he was afraid the fever would make a reappearance and we'd end up going through the ER, which we didn't want to do. Turns out he was right. By the time we got up to the floor Cole had a fever of 101 again. We'd have been in the ER by 10 pm...

    Dalynn and I figured it was as good a time as any to try only one of us at the hospital, so she's there with Cole and I'm at home. Pray that it goes well, as this will be the way we have to do things in the future.

    Monday, December 10, 2007

    Donate to Cole

    It's weird to be putting this up, quite honestly, but a lot of folks have asked how they can donate to Cole's care, so here it is. We're going to be taking donations through a local charity called The Noblemen. 100% of any donations through them will be given to us, so you need not worry that we're not getting it all.

    The Noblemen do noble work in and of themselves, so don't hesitate to check them out, also. Good group of guys.

    Here's the donation info:

    1) – Pay online through the Noblemen website

    http://www.thenoblemen.org/support/

    This will direct you to a paypal.com site specifically for the Noblemen.

    After you have entered your credit card information, a second page will appear. On that page put Cole Rollins in the section that says "Add special instructions for the Merchant". If you do not put Cole Rollins in this section, it will not go to the Rollins family.

    2) – Mail checks to:

    The Noblemen

    PO Box 418

    Va Beach, VA 23458

    In note section, state that money is for Cole Rollins.

    If anyone has any questions, please don't hesitate to ask. You can leave your questions in the comments section if you wish, or you can contact Travis Jones, who has volunteered to handle all of this for us. Here is his contact info:

    Travis Jones
    757.450.4778
    travisnjones [AT] cox [DOT] net
    (I'm trying to protect Travis' email address, so [AT] is @ and [DOT] is ., with no spaces in the address)

    Thursday, December 6, 2007

    Things So Far




    I wanted to put up a couple of pictures to illustrate what chemo and leukemia have done to Cole thus far.

    The top picture is from Cole's birthday party. At that point, he probably had active leukemia, and he does look a little sick. He'd had something going on for a week, whether it be croup or nose bleeds. This picture was taken on 11/4.

    Cole was admitted to the hospital on 11/12 and was diagnosed on 11/14. The second picture was taken on 12/6, so over a month after his birthday pic. So far, he's put on about 6 pounds. Most of the visual change is from the steroids he's taking, and from what we understand, he should shed the extra weight and puffiness quickly, within a month or two.

    However, it is still difficult for me to see, obviously. I look at Cole and wonder where the sweet boy who used to run to greet me at the door with "Daddy!" went. I miss his sweet smile. We haven't seen Cole smile in over 2 weeks, now. He mainly sleeps and eats. We're forcing him to get up and walk and play. It's just heart-breaking to watch.

    The light at the end of the tunnel is that there's less than a week of induction left. Less than a week of steroids. As a matter of fact, he's already had his last dose of vincristine. Hopefully, soon after, I'll get to see my little boy smile and play and laugh again.

    On a positive note, we went to the first Qdoba fund raiser tonight. It was wonderful to see all of the support for Cole. There were so many people there, from my work and from church. It was very bracing to see so much support, and to talk to everyone.

    Thank you to everyone that came. You not only helped raise money for Cole's treatment, but you certainly made things easier in mine and Dalynn's hearts.

    Monday, December 3, 2007

    A Bath for All

    We had a good day in the clinic, though we did have a "Code Brown" moment. It took Dalynn and I, combined with the aid of one of the nurses, to change Cole's diaper today. After we were done, they had to call a cleaning crew to clean down the bathroom. Cole's pants were rendered unwearable and his Mickey slippers took one for the team. It was, hands down, a huge poop.

    Speaking of poop, the last few days we've been up to our eye-balls in poop. Cole finally got over his constipation, and things unfortunately swung the opposite direction. We had to take him off of lactulose completely (that's his stool softener) to get him to quit going. His hiney is so raw we had to get something called "Bag Balm", which is something they use on the udders of cows when they are milking them. If you're in need of a diaper rash cure, I can highly recommend it.

    With Cole pooping so much, he was due for a bath tonight. Baths are not his most favorite things now. As a matter of fact, he cries as much for a bath now as he does for a procedure in the hospital. It is also a two person job, now. I'm sure we could do it with just one, but we use two to make it as fast as possible. This all makes baths a rather high stress time.

    Cue tonight's bath!

    Grammy and I cart a crying Cole upstairs to the bathroom. She starts the tub filling while I take off Cole's clothes. Much to my horror, Cole had a previously undetected poopy diaper! Grammy abandons bath filling to run downstairs and grab the special wipes we're using on Cole, so as not to tear his hiney up any more. I hold Cole still til she returns.

    Grammy wipes Cole down, much to his angst. He is now screaming and crying in equal amounts. We fumble around trying to put the sleeve on his arm which covers his picc line while we bathe him, but eventually get it on.

    About that time, as Grammy is bending over to check the water, I notice that my stomach, to which Cole is pressed, is rather warm, and that warmth is spreading down my legs... Yes, ladies and gentlemen, Cole had just relieved himself on Daddy! In my shock, I start yelling at Grammy to help, though I'm quite unsure what she could have done at that point.

    We then rush to get Cole in the bath as quickly as possible, but yank him back out when he starts screaming bloody murder (we had put him in feet first, thank God). Seems neither Grammy nor I had actually managed to check the temperature of the water in all the fuss.

    We did manage to get him washed, though, in the end, and it only took us about twice as long as it should have.

    I took a shower, afterwards, but ran out of hot water half way through it. It was just a bad night for baths, apparently...

    Saturday, December 1, 2007

    Change

    I have recently been finding myself wondering what kind of changes God is going to bring about in my life as a result of Cole having leukemia.

    To be quite honest, I have felt pretty humbled over the past few years. I look back on my pride and arrogance and realize just how mistaken I was. Not to say that I'm ultra-humble now, hehe. But, given the past few years, a lot of that pride and arrogance seems to have evaporated, and it was all a work I can say God has done.

    For instance, in the past, I would have thought that I was capable of handling what we're going through now. Capable of handling it by myself, that is. I probably would have figured that God had gifted me so greatly in order that I might not just survive this time, but thrive in it. I have no doubt that the first few weeks would have chewed me up and spit me out a wreck of a man if I had tried that approach. It's not a pretty picture, but it's pretty close to the truth.

    In contrast, when we did start this whole thing, I knew right away that I didn't have enough, and that most, if not all, of the strength that I was going to need was going to come from the Lord. Don't think this is some kind of wonderful revelation, though. This is a terrible, poverty stricken feeling and I would much prefer the feeling of the self-assurance.

    I guess what I'm getting at here is that I hardly recognize the person I've become when I compare it to the person I used to be. And, while a lot of that change was wrought during a very difficult time in my life, I doubt it was as difficult as what we're going through now. So, this makes me wonder what the Lord is going to change in me this time, and how drastic the change will be in the end?

    It's quite a frightening and daunting thought.

    Well, enough with speculation, here's a Cole update for you.

    Cole's cytogenetic screening is back. This is a genetic screening of the cancer cells they've harvested from his bone marrow. There are two things they look for, what they call "good players" and what they call "bad players". Each is a genetic mutation or change, but the meaning of them is different. Obviously, a "good player" is a good mutation, one that means his cancer is easier to treat, while a "bad player" is a bad mutation, one that means his cancer is harder to treat.

    The long and short of it is that Cole has one minor "bad player" and no "good players". Dr. Owen indicated that this would probably put Cole firmly in the standard risk group, which has ramifications on his treatment (though we still don't know what those ramifications are). So, his cytogenetics weren't great, but they also weren't horrible. I'll take that, thanks.

    There is also some concern regarding the side-effects Cole is having from the vincristine. These would be the constipation, some numbness and tingling in his legs and something called foot drop, which is a condition where his foot isn't pulling up enough for him to walk correctly. He also seems to be having more foot and hand pain. With his numbers being so good Dr. Owen is thinking that the next dose of vincristine (which comes on Wednesday) will be a smaller dose, which should help Cole recover a bit from all of these side-effects.

    In addition to these side-effects, they are also concerned with the general malaise that Cole is having. Apparently he's not as active as he should be, and doesn't feel as good as he could. They have already taken steps to combat this, however, and today Cole seems to be feeling better.

    I tell you all of this not to alarm you, however, but to allow you to pray more effectively. The clinical staff says that his reactions are still well within the normal range and their concern is mainly that he could be feeling better than he does.