History

Thursday, November 17, 2011 1:07 PM CST

Kyle flew through his check-up with flying colors; no cancer concerns. His echo was fine. He'll need one of those every two years due to the fact that heart damage from the chemo he had can show up at any time. Just another lovely parting gift from the monster. But, so far so good.

We are liking cancer even less now that it has taken our beloved mom and nana, Norma Robinson. She went to be with God and our Dad/Papa Oct. 22 after a brief bout of lung cancer. It was her time, and we are happy she is with God and Dad, but we miss her a lot.

Kyle continues his GI battles as he missed school again Tuesday and is trying to move past a fecal impaction, or get it to move past him.

Kyle will be 12 on Dec. 13. He's still in size 5 clothes, still working on toileting, still behind, still struggling with health and behavior issues. Still awesome. Still loving and fun. Still the light of our lives. As we approach Thanksgiving, and as I do so working in a NICU full of struggling babies, I thank my awesome God for the children who bless my lives, my 24 years of marriage, my work that makes a difference, my ministry that humbly serves Him. Life with a child with cancer was hard, so hard. Life after cancer - with growth issues and immune deficiencies - is no picnic for my little guy, either. But he is not keeping score. He is taking each day for the gift that it is. And thanks in part to all Kyle has been through and how he reflects our Savior's grace in his acceptance of it, we are all better people, more accepting, and more grateful for just about everything.

Sunday, September 18, 2011 12:55 AM CDT

I haven't updated in so very long, I wanted to keep it active for a while until I have time to save this all. But I'll keep this up for a while; Kyle has a follow-up echocardiogram and survivor clinic appointment Sept. 28, so I'll at least update after that.

Otherwise, Kyle still has trouble gaining weight and had a summer of gastro, sinus and skin infections. He is back on preventive antibiotics and that seems to have helped. A fecal impaction made him sick, feverish and lethargic and miss the first two days of school, and at 11 years old he is still 47 pounds, but otherwise, he's doing reasonably well. He is enjoying school and learning, saying more, doing more, and still blessing and challenging our lives. We are grateful.

Blessings to all of you!

Tuesday, November 30, 2010 2:02 PM CST

Goodness, it's been a long time. I'll try to update more often, and of course, if you're my facebook friend, you'll see more frequent and yet mundane news there.

Kyle is getting along fairly well so far this fall. He's on a twice a day dose of Septra, which he was on during chemo, as a preventive antibiotic through the fall and winter. He was sick nearly constantly last winter, and it's still early, but so far so good. He's had a few times of not feeling well, but he actually bounces back thus far. This is somewhat equivalent to a miracle when it comes to Kyle. We continue to take each day as the gift it was given, so we've enjoyed very good gifts thus far this fall.

Who knows what's going on in his gut; he still has ongoing issues there, and though it's likely his h pylori is still present, we can't be sure without an endoscopy. We just are kind of hanging out before we do another of those, waiting for a shoe to drop or something.

Kyle again has shown himself to be an overachiever; not only does he have an extra chromosome, he has an extra set of front teeth! His baby teeth never fell out as his adult teeth came in, and we've gone from being told they'll come out eventually to being told that nope, they ain't going nowhere. (Actually I think the term was "anchored", but you get the gist.) Since Kyle would tolerate pulling an entire line of teeth under local anesthetic about as well as you or I would tolerate pulling our fingernails out, he will need to do this procedure under general anesthetic. So, we're waiting for the endoscopy, or something else, to do the procedures at the same time. Unless one or the other becomes more of an emergency, this may wait til summer.

Kyle is reading! His teacher is doing great things with him at school. This fragile little guy is quite a fighter, and he continues to surprise us all.

Blessings to you and yours this Christmas season.

Friday, July 2, 2010 2:48 PM CDT

I just realized that Kyle has had major stuff this week and I didn't even get on here to discuss it. I'm getting entirely too dependent on Facebook!

Kyle had a tonsillectomy/adenoidectomy/bronchostomy/endoscopy on Tuesday. He stayed overnight, and I knew he was ok when he started to tear out his IV shortly after arriving in the unit. As I lay in bed with him, pinning his arms back and wrestling with all my might, I heard the nurse tell Brad they couldn't use restraints because of legal issues and it's traumatic for the children. I politely pointed out that right now his mother is restraining him with some force, and it seemed to me that might be a bit more traumatic than being restrained with say, a piece of fabric. Just a hunch.

The IV was finally protected, after several failed attempts with a board and sock taped over the arm with the IV. The nurse cheerfully suggested he could rub it all he wanted with his boarded other arm, but but he would not be able to pull it out. Hah. After about 30 minutes, he was bleeding, and sure enough, it was out. We had politely suggested just using the gtube for pump hydration through the gut if he could tolerate it, and at that point they agreed that trying the g-tube would be preferable to tying him to the bed. Once that was settled, he did really well, though he (and I) were up all night avoiding the dreaded pulse oxometer. We went home Wed.

His tonsils had dirt and food trapped in pockets around that were infected, so he always had a low level infection and sore throat. Hopefully now that it's gone, that will help his health and breathing. His endoscopy looked pretty good, maybe just a bit of yeast; they're testing that. His bronchoscopy showed some nodules on the left side of the trachea, which the ENT, gastroenterologist and pulmonologist all agreed they had never seen before, uttering something of a collective "Huh." So samples of all that is off for pathology studies. Now, as a cancer mom, I know that path reports can be rushed, but in the ENT world, they apparently take a week, so no news on those yet. I resolve to not worry unless I have to (mostly).

Kyle is to remain out of day camp and relatively quiet for 14 days. Apparently at 7-14 days the scabs come loose and he can hemorrhage, at which point he must be rushed by ambulance to the hospital. Lovely. I was hoping for more drama in my life. So far Kyle is pretty tired and happy to be at home, but I figure that will only last for so long.I am hoping that the scabs behave, the path report is negative, and Kyle does swimmingly, so we can return to a more boring lifestyle pronto. And perhaps even solve the ongoing fight with the evil Medicaid bureaucracy. Because yes, my friends, boring is good -- very, very good.

Wednesday, March 17, 2010 1:51 PM CDT

The iris are blooming, the sun is shining after days of rain, and the winter coats lay unused but not yet stored. It must be the harbinger of spring, and nowhere is that more evident than in Kyle's health. The rocky winter of nearly fatal gastro viruses and incessant gastric and sinus infections seems to be fading in the distance. It's probably way too soon to count it all out, as he's only 1 1/2 weeks off of antibiotics. He's also slipping in weight, which may mean the h pylori GI infection is back. But it's sunny, he had a good visit at the developmental ped, who thought he looked so much better in terms of his mood and social interaction, today, that I choose hope. Today is a good day for Kyle. Tonight, he gets to go swimming. And still and probably forever in my one day at a time philosophy, I say life is good.

Brandon and Ryan are well. Brandon is back into gymnastics and loves it. Ryan has an ISSMA band contest coming up. Brad and I are, of course, far less interesting than our children.

It seems regularly I hear of new kiddos with DS being diagnosed with leukemia. Prayers.

Enjoy the turn in the weather!

Sunday, February 28, 2010 10:31 PM CST

Kyle has been battling sinus infections but is now midway through a 3 week dose of antibiotics and seems to be feeling much better at last. This winter has been so rough for him, and he seemingly always has a virus or bacterial infection and has spent most of the winter either virally ill or on antibiotics for a bacterial infection. So the immune suppression certainly seems to be an issue again. Will follow up with infectious disease MD soon. Also with psychiatrist because he seems to be held captive by some thoughts that he can't let go of; common in kids with autism, but harder when the kiddo can't tell you what he's feeling!

He has a new communication device and is starting to use it sometimes, which is good. He is happy and loves school and is able to go, so all in all, things are good.

Please pray for our friend's daughter Jenae who is being treated at Kyle's cancer clinic. We have other friends really needing your prayers, but due to confidentiality I don't want to name them here, so just pray for the DeHoff's family friends, whose family needs help and peace. Thanks, and here's wishing spring gets sprung soon!

Thursday, January 21, 2010 3:32 PM CST

An update after our big ordeal 2 weeks ago. Kyle got back to school last Wed., and he's been doing okay, but still so tired. Early this week he just got more and more fatigued. I called Tues. AM when he just would not wake up and had to take him into the ER again, where we were met by the ER staff and also the oncology team and stat bloodwork. Clearly this stuff was a sign of leukemia relapse, but praises to God most high, his lab counts were normal. He woke up and seemed fine, and all tests were blessedly normal.

This of course was reassuring and frustrating, no bone marrow relapse but no answers, either. The onc said he might need a CNS sample (spinal tap, lumbar puncture) if not better by Thursday. It's Thursday now, and I'm happy to report that for the first morning this week, Kyle actually woke up when I tried to wake him and dressed him and actually got himself out of bed. Plus, in the weird way only cancer moms think, I was thrilled to see a bit of diarrhea return. Thrilled because that tells me that he's probably got a bit of that awful virus lagging behind, probably still fighting to recover from that major assault on his body.

When you can rejoice in poop, either you've truly learned to live in Christ or you've completely lost your mind. Or both.

Thanks for checking in!

Monday, January 11, 2010 1:00 PM CST

I'm so sorry I've been off this page so long. It seems Facebook has taken over and I post quick little updates there. But hey, it's a new year, I'll try to be better.

I'm remembering to go here for not a good reason. Kyle got very sick Wednesday evening with stomach flu. No signs it was serious Thursday, but fever and lots of disrrhea started too. When I put him to bed we thought he might be getting dehydrated and I thought I would take him to the pediatrician in the morning. I went to bed around midnight and was struck by an urge to go check on him again, though he had been sleeping quietly. I got out of bed and into his room to find him in a scary state. His face was so drawn, his eyes so far sunken, his skin mottled, his hands and feet so purple they were almost black. His breathing was shallow and his heart racing. I said "are you all right?" and he said no. (I know, stupid question. I said "do you need help?" and he signed and croaked, "help." We were off to the ER. Brad had succummbed to the vomiting then, so I went on my own. In the car he began to lose consciousness. I pulled over to see if he was breathing. I realized then I should have called 911, but by then we were too close to the hospital to pull over and wait for an ambulance. I kept talking to him to keep him awake, at one point telling him that I took him through 3 1/2 years of leukemia treatment, and if he died from a stomach virus, I was going to be really mad. By the time I got him to the ER he was mostly unconscious and completely lost muscle control. He was rushed to by 2 nurses and a doctor, who quickly began IVs of saline and glucose in both arms and who surrounded him with hot packs to raise his body temp. They could not find a blood pressure. If I had found him even an hour later, I think it would have been too late. But their efforts brought him back to the point where his bp was 71/43 and he was conscious again, but still sick, still critical. He was admitted to PICU (pediatric intensive care unit) and improved steadily, though his blood levels took some time to recover. On Friday afternoon, he was released to a regular floor - the same floor where he spent most of his leukemia inpatient stays. Friday night he became very, very agitated, ripped both IVs out (picture blood and saline everywhere), and was crying and fighting. At one point he looked at me with his tear-stained face and signed and croaked, "Sorry." He was just beside himself. Five nurses and I tried numerous times to re-stick him for IVs, preferably in a concealable place, but he was too strung out, his veins were shot, and no luck. The pediatrician agreed to just give him Pedialyte by gtube overnight. Now unleashed from IVs, Kyle awoke to undo his Gtube tubing and escape. I awoke around 3:30 AM to find him GONE. No one knew where he was, and nurses and I in my gown were flying everywhere. A nurse found him in the teen room, next to the DVDs. Kyle was returned to the room and quickly received his own personal DVD player for his room. After that episode, and despite one episode of vomiting, some diarrhea and low fever Saturday, he was discharged. I think they just wanted to get rid of him before he managed to kill himself in the hospital.

Yesterday, Kyle was fatigued, had a low fever, and lots of diarrhea, and did not eat or drink much. Since he wasn't vomiting, we could use the Pedialyte by Gtube to keep him hydrated. He is home today with Grandma, and last I heard has not had fever or diarrhea, just fatigue. I think it's probably normal that he is tired out after all that, so I sincerely hope that means he's on his way to recovery.

If you actually checked in after all this time, thank you and bless you. Sign the guestbook; if I know someone is still reading, I'll be happy to keep posting now and then. If you've read this in the past, you'll know my feelings that "boring is good." The last few days have been anything but boring, thus not particularly good. We are just thankful God gave me that nudge to check on our little guy in time. Prayers for Kyle and prayers of thanks are due if you're willing. Thank you!

Thursday, September 17, 2009 12:58 AM CDT

I have been terribly tardy in updating, I know. I started a fulltime job at Music for All and am still freelancing, so most spare moments are spent being a mom. But a lot has gone on with Kyle, so here's the latest.

As I last mentioned, his June endoscopy showed he had an h.pylori infection in his gut and a swollen tissue area at the top of his airway, indicating GERD (reflux). He was treated for the infection (which can be responsible for malabsorption, explaining his inability to gain weight) with two antibiotics and put on Prilosec for reflux (which probably was causing the sleep disorders). Following treatment, he gained 4 pounds in less than a month and started sleeping much better. This was wonderful. In the last month, however, he's had a persistent cough, lots of GI issues, and he's sleeping very erratically again, so I think perhaps the infection is back. There is no way to tell beyond an endoscopy, and he's scheduled for a followup Sept. 30, so we'll just wait and see. Yawn.

On Sept. 25 he has his first 6-month check from oncology. Until March, he was on an every 3 months schedule. This time we are heading back to St. Vincent, and I'm glad. I really prefer it there. We'll meet a new physician who is the medical director there and has an interest in Down syndrome and leukemia, so that's good. I'll have them check his glucose levels, too, because sometimes he's excessively thirsty. Also that day he sees his infectious disease doc re. the immune issues, and I'll find out then if they recommend the H1N1 vaccine for him, and if we are going to put him on constant antibiotic through the fall and winter to ward off infections. He was sick a lot last winter.

I'm sorry that our family is entering the pediatric medicine world. Our nephew Zachary has a scary respiratory episode and is being evaluated for all sorts of things and will be going home with an apnea monitor. Prayers for him are appreciated. My friend and coworker Kayla is struggling with significant complications of lupus; pray for her, too.

I'm pleased to report that despite the issues, Kyle is happy. He's quick to laugh. He does not dwell on his troubles. I really want to be him when I grow up.

Thanks for checking in. I will update again after the whirlwind of appointments in late Sept.

Tuesday, August 4, 2009 6:21 PM CDT

Kyle finished treatment for the h.pylori intestinal infection and gained 4 pounds between then and his next appt. in just a month! This could be the problem behind his previous inability to gain weight, and it was wonderful news. He will have another endoscopy in about a month to see if the high area of swelling has gone down since beginning reflux treatment with Prilosec.

He is doing pretty well, though having occasional sleep/wake issues. I can't believe he'll start third grade next week!

Just wanted to do a quick update. Will try to update more often with these quickies; easier for me and better for those of you still following him, too, I'd imagine. I also updated his photo page if you want to check that out. Thank you and bless you!

Wednesday, June 24, 2009 2:10 PM CDT

Sorry for the gap! It's hard to update in the summer, it seems. I always get little news bites on my facebook page if anyone wants to friend me (bdehoff@iquest.net).

Kyle had a great vacation and stayed well! Gulf Shores was beautiful! We also enjoyed Holiday World last week. Today, Kyle had an endoscopy. Brad and I got to be in with him and watch the whole thing on camera. We now know our son inside and out! He has definite inflammation in the stomach, that his GI doc believes is h. pylori infection, a common cause of GERD (reflux). He also has a very swollen part for which I can't recall the name, but it's just above the vocal chords. This is abnormal and is probably from reflux but could also be from allergies or sinus infection, or some combination. He's already on allergy meds, he's going on antibiotics now for two weeks to clear any h. pylori and/or sinus infection, and he's going on Prilosec for reflux. This inflammation could definitely be contributing to his apnea, so we hope that we can fix this and then that will help improve Kyle's sleep. He also had several labs drawn and had a tissue biopsy of the intestine to check for celiac disease. We'll hear about all that on the followup appointment July 17, if not before.

Kyle is sleeping a bit better with the allergy meds but still has a much shorter night than he should for his age and he clearly is not having a very good quality of sleep, with lots of movement, etc. He seems exhausted often. Other than that, he's happy, and he really loves summer camp.

I was offered and eventually accepted a full time job as community relations manager for Music for All (see www.musicforall.org). I start this Friday with a trip to the summer symposium, which is just a fancy term for national band camp. I find my first day of work being at band camp to be kind of hilarious. I hope it works out for all of us, including Kyle. They have said it is fine to leave for Kyle's appointments, and I'm trying to get those scheduled early or late in the day. I'll still be freelancing, so Brad and I will each have two jobs and Brandon has one, too.

Thanks for checking on us!

Friday, May 29, 2009 10:32 AM CDT

A two-week update! Kyle recovered from the ear infection fine. He still struggles with fatigue. He is sleeping a bit better; still some trouble falling asleep, and still daytime sleepiness, but overall it's livable, for the parents, anyway. He had an appointment at the gastroenterologist's office today and he is up to 44 inches in height and 39.5 pounds in weight. That's an increase, but now his height has surpassed his weight, and since he's eating well and getting gtube feeds, that's a concern. I have known for some time that he isn't growing appropriately, in height or weight, but I guess since he is now officially taller and skinnier he warrants some action. He is starting a gtube feed that's higher calorie than Pediasure, and we're supposed to keep trying to add calories to his diet. On June 24, he is having an upper endoscopy, which is when they stick a tube down your throat to view your upper GI tract. From this they can tell a number of things, and the things they are after with Kyle is to see if he has GERD (reflux), which can cause sleep problems and other things, and/or if he has celiac disease, which we have always wondered about. There are blood tests that test for its likelihood, and those have been negative, but the scope is the only way to know for sure. They'll also do a bunch of nutritional labs while he's under. Of course, with Kyle, the anesthesia and his airway is the biggest worry, but this is a light anesthetic and we can even be with him during the procedure.

In addition to all the appointments and family summer plans, Kyle will be going to day camp and having some extended school year summer visits from his school speech and occupational therapists. We also are still trialing augmentative communication devices, and in the meantime he is getting more and more verbal. He also can attend a summer therapeutic horseback riding program and is joining Special Olympics in the equestrian sport!

My job interview has taken me to the final two candidates, and I await with a mix of hope for the job and uncertainty about how I'll be able to do it and attend to Kyle's needs. Significant prayers now that God sees to it that the best thing happens with this. I'd be willing to accept either outcome. And prayers for Kyle to gain strength, stamina and health - improving his quality of life and making full-time work a bit more feasible for Mom!

Thursday, May 14, 2009 10:18 AM CDT

Time to catch you up! I'm home with unexpected "time" since Kyle is sick. He woke up around 4 a.m. coughing and retching, and by 5 he had a temp. He's been very lethargic. With the immune issues, we don't mess around with illnesses, so we were off to the doctor this morning. It turns out Kyle has an ear infection (a "very evident, red, bulging infection" according to the ped), which seems to have sprung up out of nowhere, illustrating the necessity of speed when getting Kyle treatment if he gets sick. Being a true cancer mom, I was tickled pink at the news he has an ear infection, because it is, after all, just an ear infection. His tubes are out of place in his ears, so I'll need to report this infection to the ENT so we can keep track of them and know when/if he needs new tubes.

The parade of appointments and meds have been quite the whirlwind this spring. After much discussion about whether to do a tonsillectomy on Kyle, we all decided that if we can get his sleep more regular, perhaps we can wait, and just repeat the sleep study in a year. He's continuing on the asthma drugs to try to help out his airway, and he is on a slightly upped dose of the fluoxetine because it's wonderful helpfulness seemed to fade after a bit. The good news is he's no longer awaking in the middle of the night for hours at a time. The bad news is he is finding it very hard to get to sleep, despite being put to bed in an exacting routine and returned to bed when he leaves it. He usually crashes on the floor between 10 and midnight, and then he's usually up by 6. This isn't too awful for the parents, but it's still really hard on Kyle. We are now trying melatonin, a natural hormone, to help him get to sleep. It hasn't worked seamlessly but we're still tinkering with it, and it seems like it may help when we get it right. We follow up with the pulmonologist in about 3 months. I had to cancel a job interview today since Kyle was sick, but they are willing to reschedule it. I guess that's one way to test an employer's flexibility and tolerance. I wouldn't recommend it, though.

Otherwise, Kyle is battling fatigue some days more than others and often has good, happy, and increasingly verbal days. School is out May 27, and his summer will be full with vacation and a nearby day camp for kids with disabilities. Someone asked in the guestbook if Kyle has Down syndrome, so yes, for those of you who don't know him well, Kyle had Down syndrome, autism, is a leukemia survivor, has hypotonia, primary immune deficiency, sleep apnea, hypopnea, reduced REM sleep, high frequency hearing loss, and difficulty gaining weight. More importantly, Kyle loves music, counting, the alphabet, swinging and sliding, amusement parks, and spending time with his family, as well as his teachers and therapists and his church. He is an ambassador of God's love. He's a wonder.

Have a wonderful spring.

Thursday, April 16, 2009 9:38 AM CDT

Kyle's sleep study went amazingly well. All the prayers for calming his spirit must have been heard; he was so inexplicably calm as the dozens of wires were hooked up to him. I have a cute picture of him on my facebook page with all that attached! The study showed that he has about 10% REM sleep (normal is 25-30%) and mild to moderate sleep apnea (closed airway when sleeping) and hypopnea (partially closed airway when sleeping) syndrome. He is on a couple of asthma drugs that are thought to help with apnea, and he has follow-up appointments at the end of April with the pulmonologist and the ENT (to consider tonsillectomy).

However, what seems to have done the most good for him in the sleep arena is the fluoxetine he started recently. That is generic Prozac. Kyle was showing a lot of signs of anxiety (sleep issues, inability to relax or focus on one thing, frequent crying, constant grinding of teeth and stimming). We decided to try the antidepressant, and it's a tiny dose, but about 2 weeks after it started, he calmed down a lot, seems much more content, and is sleeping a lot better! Consequently, the rest of the family is feeling better, too. We also follow up soon on that drug. Better living through chemistry!

I'm getting things set up with his new oncologist, and getting ready for his annual case conference at school, also at the end of this month. The end of April will be a busy time!

I also update tiny news at a time on my facebook page, and reflect occasionally on the disability issues on my examiner.com page (
http://www.examiner.com/x-3598-Indianapolis-Special-Needs-Kids-Examiner) , so feel free to check in on us there, too. I'll update here early May at the latest, with news of the parade of events that last week in April. Blessings to you this spring!

Friday, March 27, 2009 8:24 PM CDT

Kyle saw the infectious disease specialist today and collected a new label of primary immune deficiency. This is just a way to describe his low IgM and IgG Subclass 4. The biggest issue with those is the IgM, which is like the foundational immunglobulin in the blood, but there is no way to replace that. So basically we just have to treat illnesses aggressively, choose antibiotics before passing go (waiting to see if it might be viral), and possibly going on daily Septra again in the fall/winter seasons. (Septra is the antibiotic he had throughout leukemia treatment.)

His sleep study is Tuesday night; prayers that he will tolerate all those electrodes all over his head and body and actually produce reliable data would be appreciated. At least a little sleep for us both that night would be nice, too, but that may be way too much to ask!

Tuesday, March 17, 2009 10:59 AM CDT

Well, my squeaky wheel got some grease and we have appointments now. I also have some more info on his labs as I impressed the nurse with all my questions on his immunoglobulins, antibodies and allergy testing until she said sweetly, "would you like to see the whole lab report?" So hot off the fax, now I see where the concerns seem to be. The fact that I can confidently and accurately read a lab report is a source of both pride and regret. I'd be happy to be rolling along life without a clue as to how to read so much as a CBC. Oh well!

Kyle has two classes of immunoglobulins low. The most impactful is the IgM, which I referred to before, and that is at a level of 29 (normal being 47-311), and his IgG Subclass 4 is also low, at a level of less than .2 (normal being 2.0-95.0). I don't think the subclass 4 is as big a deal, but we'll see. There are some other abnormalities in there, but they seem consistent with infection, and he did seem to have a sinus infection when the labs were drawn, so I won't obsess over that stuff. We at last have an appointment with the infectious disease guy, on March 27. I will find out then if all this means we have to do anything differently for this. In the meantime, Kyle is on round 2 of the latest antibiotics for the sinus infection, so I hope he's got the goods to fight most of the ickies off for now.

We also at last have a sleep study appt. This will be the night of March 31 into the morning of April 1. (April Fool's, Mom - no sleep for you!) Kyle has some nights where he sleeps pretty well and others not so good. Last night he was up about 1:15 to some unknown time because I passed out and found him asleep on the floor just before 4:30. A couple nights before he had a very hard time getting to sleep. The night inbetween was lovely, and we've had some other decent nights. So who knows what will enter the sleep lab March 31!

In other news, I went to a special ed law conference and got all updated on new Article 7 Indiana special ed laws, so I am sorting through that info and beginning to prep for the inevitable spring case conference. Kyle starts swimming tomorrow evening. We continue to be stymied by toilet training. Life goes on! Best wishes for your life, too!

Saturday, March 14, 2009 2:29 PM CDT

Kyle responded well to the zithromax and was better, even sleeping pretty well for three nights (hooray!), but since Thursday he has had a little snottiness return (literally, not figuratively) and he has been unable to sleep til after 1 a.m. Thurs. night/Fri and almost 12 a.m. Fri. night/Sat. He restarts zithromax on Sunday night for the second course of the sinus infection treatment, which I think he clearly needs.

We got news this week that is a bit concerning, but that seems to explain the difficult winter Kyle is having. His immunoglobulin test reveals that his IgM levels are low. Now a little lesson in immunoglobulins: we have several of these puppies that work for us to fight infection and keep things going well for us, including IgA, IgG, IgE, and IgM. Ig stands for immunoglobulin. Kyle's Ig levels are fine except for IgM, which is low. I don't know how low yet, but he's being referred to an infectious disease specialist, so it's not insignificant. IgM is the one that works mainly in the blood and lymph systems and is the primary and first source of fighting bacterial and viral infections. Most people who have low IgM have low levels of other Igs, but there is something called Selective IgM Deficiency, which is listed as a rare disorder and which affects .03% of the population. Now for most parents, this would make them think that if it's that rare, it must be some mistake. For us, the fact that it's that rare makes us think it all makes sense. Kyle specializes in rare. We won't know more about this until we have an appointment with the infectious disease guy.

Appointments seem to suddenly be a rare and elusive thing. We are still waiting for the sleep study appointment as well as the infectious disease appointment. The fact that my child can barely sleep most nights and is walking around potentially susceptible to any bug around in this infectious winter makes me a bit anxious to get the ball rolling. Thus, I tried to hurry some folks along Friday, and we at least got the referral out of the peds office to the ID office, so I can harass the people there next week. Kyle should be glad he wasn't born to a shy mother.

Thanks for checking in. Sign the guestbook if you have a chance. Have a great last sprint of winter.

Thursday, March 5, 2009 10:59 PM CST

It's been quite a time lately. Kyle recovered very slowly from the strep throat and scarlet fever, and seemingly a sinus infection, too. He had 3-4 good days and then started to get sick again. It seems like a classic sinus infection returning after too short a course of antibiotics, so he's starting zithromax today. It's hard for him to breathe through the congestion.

I'm currently up at midnight waiting for Kyle to fall asleep. I've tried multiple times to get him to bed and am now hoping he'll just wear down from lack of reinforcement, so I'm typing. I summarized today for a friend in an email, and I'm tired, so here it is:
Long, long day. Pulmonology appt., xray, St.Vs: oncology appt., Clarian; labs (back to St. Vs); speech (St Vs Ped Rehab Center). I'm exhausted and Kyle walked all over those places and should be absolutely exhausted, too, but no. Yet on Wed. he fell asleep 2x in school, 1x on bus, and 1x for an hour or so at home on floor. Something is wrong. He has a swollen node that's probably leftover from strep, we hope, but I'm warned by the oncology RNP to "keep your mom radar on it". His onc RNP and his pulmonologist thought he needed immunoglobulin tests, and I agree, with all the illnesses he's having, so he had IgG, IgA, IgM bloodwork, an allergy panel, and of course CBC with diff. He had an Xray of his adenoids. He is being scheduled for a sleep study. Sleep specialist said it could be apnea/obstruction, could be neurological, could be GI related, or could be behavioral, and all have a course of action but all are different and we need to try to narrow it down with a sleep study. Study will be sometime in the next few weeks and we follow up with pulmonologist/sleep dr. in 2 months, though I may beg for sooner if all the tests are done sooner.

So there, not very eloquent, but it's an accurate picture of our day. Another sad note is it was our last visit with his oncology team; we're moving to St. Vs for future care since Kyle's oncologist is no longer practicing in Indy. I'm worried about Kyle but glad that he's now getting the tests needed to determine what is wrong and how to fix it. Please keep him and his caregivers (professional and familial) in your prayers. Thanks!

Tuesday, February 17, 2009 3:39 PM CST

We are all glad to get last week behind us, especially Kyle and me! If you missed last week's post, Kyle had strep throat that was missed in a Monday strep test and not caught til a Wednesday strep test, by which time he had scarlet fever and was just really sick. He has spent the last several days recovering, and I think he had a sinus infection, too, with bleeding sinuses and severe congestion. Today, he went back to school finally, but he still has a cough that's pretty nasty and he is still very, very fatigued. He fell asleep at school this morning and in the car on the way to and from therapies. It's hard to know how much of this is from the illness and how much is from sleep disturbances. The sleeping seems to be a bit better, but he's still up pretty early (about 5:40 today) and I don't think he's sleeping well even when he stays in bed. Plus it has only been about three days since his last night of multiple times awake and up through the night. It's all a big puzzle that even this Dr. Mom can't completely unpack, though it seems like he may have sleep apnea, and the chronic fatigue and parade of illnesses also bring a few leukemia thoughts to mind, which I quickly push back into the abyss. He needs a chest Xray before he sees the pulmonologist March 5, and if the fatigue persists, I may ask for basic bloodwork before that visit, too.

Ryan developed the dreaded sore throat, fever and strep voice over the weekend, but the ped on call blessedly called in antibiotics for him, given his exposure to Kyle. Just to show the difference between Kyle and a typical child, Ryan was fine in 24 hours and is perky today, looking forward to his 13th (!) birthday on Friday.

Friday, February 13, 2009 2:09 PM CST

Wow, what a week we have had! Kyle's life has been a virtual wonderland of illness and sleep disorders, each combining to worsen the other. He started feeling bad Sunday, and by Monday had a fever and trouble swallowing. I took him in for a visit with the nurse practitioner at the ped office, for a strep test, which was negative. We were told it was a virus and sent on our way. The next day, the fever was worse (101) and he was looking much worse and could barely swallow. I called and they encouraged us to wait it out. By Wed. morning, he had broken out in an almost all-over red rash, his eyelids were horribly red and swollen, his fever was 102 and uncontrollable, he could not swallow at all and was drooling, and I called and pretty much announced that we were coming in and when would be the first available time. This time, the strep test was positive, and the rash was scarlet fever (which is just the old term for the strep-associated rash). The ped was concerned about how sick he looked and how bad his rash looked, so he went home on amoxicillin with a follow up appt. scheduled for Thurs. By then, he was improving (no fever) but still sick, and we were cleared to stay home. Today the rash is still there but fading, and though he was unable to eat this morning he ate his first successful, though partial, meal at lunch. I'm supplementing with bolus feedings of Pediasure for the first time in a long time. His eyes look very dark and almost bruised, and he has lots of bloody mucus from his sinuses, so I think he may also have a sinus infection. Amoxicllin should handle both issues, though, so now we wait.

As for the adventures in sleep disorders, he has been so very sleep disturbed. With his tonsils so swollen, he can't breathe well anyway, and he's been up many times during the night. Last night, he refused to go to bed for the first time and was up at 1 and 3 for a while. Obviously, he's tired, and that doesn't help with the illness stuff. His March 5 pulmonologist/sleep appointment can't come soon enough!

Kyle has been out of school all week, but we hope and think he can go back on Monday. Your prayers are still appreciated! This is the first time he's had strep, believe it or not, and it's been overdramatic as usual. Kyle has a flair for making things interesting!

If you want to keep up on us more, I'm now the examiner.com reporter for Indianapolis special needs parenting. You can see that at
http://www.examiner.com/x-3598-Indianapolis-Special-Needs-Kids-Examiner

My pay is contingent on page views, so feel free to stop in and check it out, and come back if you like it!

Thanks from the land of sick and sleepless,
Beth

Sunday, February 8, 2009 9:54 PM CST

Kyle is not feeling well today. He was fine this morning, though he woke at 4 a.m. I guess all the sleep disturbances have caught up with him. He slept off and on all afternoon and early evening, and is sleeping unusually soundly now, though he may be up at some insanely early hour again. He is not eating well, has an awful, gaggy cough, and often seems like he's going to throw up but hasn't yet.

Tuesday, he's due to have the ABR testing, also known as adventures in sensory processing disorders, chapter 6: Kyle deals with electrodes and wire all over his head. I guess this will be a test to see if a sleep study is at all an option. That is, if he feels well enough to do it Tuesday.

I write tonight with a bit of sadness as we've decided to leave Kyle's cancer care team at Clarian North after March and return to St. Vincents. His wonderful oncologist is leaving and the team there is definitely in flux, and Kyle is used to St. Vs and pretty comfortable there; as all his other doctors and testing is there. The children's cancer program there has grown, and it seems he will get excellent care there. I am sure this is the best move, but having spent hours upon hours with these folks on his original cancer care team, I came to care a lot about them and will hate to leave them, and am sorry that they are going through such a stressful time. I have them in my prayers, that it will all work out the best for everyone.

Tuesday, January 27, 2009 10:59 AM CST

Apparently, sleep is highly overrated. Kyle has taken to arising at rather odd hours, to put it mildly. Friday night, for example, he went to bed at 8:30 and got up at 1:15 a.m. full of life and ready to roll. Despite my constant encouragement to return to slumber, Kyle never went back to sleep. Heck, he never even stayed in bed for more than three minutes. If you're interested, yes we tried Benadryl, and no, it didn't work. In fact, we tried everything short of tying him to the bed and, not wanting a visit from Child Protective Services, gave up. Other similar escapades have occured in our household when he awoke at 2:30 and 4:30. What fun.

We saw the ENT yesterday, and she thinks he should see a sleep specialist. (You think?) They are apparently busy people, and our appointment is set for March 5. Thankfully, Kyle doesn't do this every night, so we have had a few nights of decent sleep to sustain us thus far. Apparently this sleep issue is kind of common in kids with autism. We could have done without the confirmation of his dual diagnosis in this way, but oh well.

He also failed his fourth or fifth consecutive hearing test in the high tones, so this seems to be not behavioral but actually a high tone hearing loss. They now have an ABR test (which measures the brain's response to sound) that is not sedated, but does require electrodes and wires fastened to the head. That's scheduled for Feb. 10. Given Kyle's sensory issues, this could be an adventure unto itself, so I have some electrodes as a take-home gift to "condition" Kyle to having these stuck to his head. This will give us something to do at 3 a.m., I figure.

Other than that, Kyle is over his stomach illness and feeling pretty well. He is skinny as a POW, and we have an appointment with the GI doc on Thursday to discuss his weight, or lack of it. Given his fondness for cheeseburgers, french fries and ice cream, plus the Pediasure pumped in his g-tube all night, you would think he'd be at least pudgy, but no. Every parent whose child has a medical problem wishes they could take it for them. In this case, I could really use this problem, as my weight seems to be rising in inverse proportion to his.

Thanks for checking in. Pray for Kyle if you feel inclined. I'll update again soon. (Something else to do at 3 AM!)

Friday, January 16, 2009 2:44 PM CST

Kyle is sick today; he has a low fever, won't eat and has vomited and is gaggy. This came up this afternoon, mostly, and our van is in for work so I had no car. He came home via bus at normal time and isn't in bad shape, but obviously is quiet, tired and still nauseated.

I haven't updated much; busy life, and twice I wrote an update and it disappeared into cyberspace. I hate that! Kyle is doing pretty well otherwise, but can't pay attention to schoolwork. He seems to have a lot of sensory issues increasing and we're going to try some sensory strategies at school.

We hope you had a merry Christmas and a good new year so far. Gosh, it's flying by. In March it will be 2 years since Kyle went off treatment for leukemia. After that appt., he'll just need to see the oncologist (or some oncologist; I hear his is leaving) every 6 months. It's getting more distant in the rear view mirror, and we hope it someday becomes just some memories of a place we visited once but don't intend to go back to!

Sunday, December 14, 2008 10:31 PM CST

Kyle turned 9 years old yesterday! I will always be profoundly grateful on each birthday he reaches - another year he came so close to never being able to celebrate. When your child fights cancer, you lose your sorrow at your baby turning another year older, and instead feel the deepest joy and gratitude.

Tonight, Kyle is sick again. Our little guy has had a rough fall and early winter with various infections and viruses. His blood counts last week, however, looked nice and normal, other than some abnormalities very consistent with a virus. At the time, he had a viral rash. Tonight, he felt awful, wouldn't eat, and had a very congested and yet runny nose, red and swollen eyes, was breaking out on his face, and looked sad and feeling awful. We sent him to bed with Tylenol, cold medicine and a prayer.

So we're glad that all looks well with his blood counts but are sad for him and a bit uncomfortable that he can't seem to string more than a week or so of wellness together before getting sick with something new.

Thanks for checking in. I'll try to be more frequent on the updates. Blessings to you this Christmas season, and please pray for all the kiddos trying so hard to be well.

Wednesday, December 3, 2008 10:09 PM CST

Kyle had a good Thanksgiving and seemed to be doing lots better since the weeks of fatigue and skinniness after his recent GI illness. He still was tired off and on, though, and had redness around his gtube stoma. That got worse this week so I started him on a yeast/fungal ointment in that area, but no response, and today he got a large red rash spreading all across his abdomen. At least it's on his skin, not under it, but nevertheless any weird symptom makes Mom a bit reflexively uncomfortable. Fortunately, he has a regular oncology check up tomorrow so we'll get counts and another opinion. The ped thinks it's impetigo and contact dermatitis, and I think it's neither, but yet I don't know what it is. I kept my opinions to myself, knowing we'd be at the oncology clinic tomorrow with other folks to weigh in. I just have always taken that stoma as a barometer of health. When he was in chemo treatment, it was a wreck, and soon after he went off treatment, his skin healed nicely and it's looked great. So I really do not appreciate it looking cruddy, which it has ever since he got sick a few weeks ago.

Update Thurs: Kyle's counts are very good on the leukemia front, thank God. They are a bit funky but in a way that is consistent with a virus, and the oncology nurse practitioner thinks Kyle's rash looks viral in nature, so that all fits. It's all over his abdomen and chest, back and groin now. So much for the peds' contact dermatitis theory. Kyle seems to feel fine, though, thankfully. The virus can also explain his fatigue. Overall, it's definitely something we can deal with. Pray he gets and feels better and can stay that way for a while.

Tuesday, November 11, 2008 3:15 PM CST

Well, the lab results were a day late, but in this case, no news actually is good news. Kyle's counts all look normal. Hooray. The only out of whack thing is persistently high neutrophils and low lymphocytes, but that is likely a sign that he's still fighting something off, which would explain his persistent tiredness. This is my mom analysis, anyway. He also is a little low in glucose, but he'd just come off the whole vomiting thing, so I won't fret over that much. No one is too concerned in doctor land, and I'm not one to borrow trouble, as it seems to find us on its own enough anyway, so we are good with all this and pressing on cheerfully, knowing that an oncology check-up is coming in early December anyway. The addition of FiberSure to Kyle's diet seems to be moving the earth more regularly now, so perhaps we can keep impactions away, too. I was even able to focus on Kyle's new occupational therapist and become interested in pursuing sensory activities for him. Developmental needs usually take a backseat to health needs, so when I get interested in development again, it's a good sign. Dear Kyle always gives us plenty to focus on if we choose to. Mostly, I prefer to focus on his killer brown eyes, sweet smile and warm hugs. I thank God that it looks like we have plenty of that to come.

Thanks for your concern, to those of you who have been checking in for news. It is good to know we have your support and prayers.

Friday, November 7, 2008 1:20 PM CST

Kyle is better and back to school, but still really fatigued, and having off and on constipation. He was at the GI dr. office today and they offered to run bloodwork, which I accepted, given his fatigue, frequent illnesses in the last month, and some gtube redness and the fleeting rash, all of which can be signs of leukemia. All of this also can be signs of about a hundred other things, and he's eating well and happy overall, so I'm doing my best not to panic and usually succeeding (though I did lose my car for 3-4 minutes in a parking lot today). He also has a heart murmur, which is benign and not a big deal, but no one ever mentioned that before. Apparently it showed up on his end-of-treatment echocardiogram, but all I heard was that it was normal. A heart murmur is not a big deal, but still, it would have been nice to be informed about it.

When you're a parent of a child who has had cancer, you gain all sorts of lovely things like perspective on what's important and what isn't, overwhelming love for your kids no matter what, and a sense of humor and peace and faith that comes from knowing at last that you have no control over the big issues of life. However, there is a dark side to all this sunshine, in that you never really let go of the worry, never lose sight of the tenuousness of life. And you never take vague symptoms like fatigue and pallor and decide that it's probably fine. You lose most of your naivete and, with that realism, gain some paranoia as well.

So, I use the left side of my brain to assure myself that all is probably well, and am currently employing leftover Halloween candy to soothe my less rational right brain. It is that right brain that writes and makes a living for our family, so we must nurture it carefully, and sugar seems a somewhat better choice than wine for now.

As for Kyle, he is cheerfully unaware of the hubub, content and smiley but quiet and sleeping a good 12 hours a night and napping in the car when he gets a chance. I hope and pray that on Monday I can report that his energy is returning and his labwork is beautifully normal.

Monday, November 3, 2008 10:20 PM CST

Kyle stayed home from school today but seems better. The rash is going away and no pukies or diarrhea today, though a lot of GI issues. We are following up with his GI dr. office on Friday to see if he needs a followup scan for impaction. If he continues as is, he probably will. If he has a good poop before then, though, probably not. He is still thin and tired out from it all, and a little pale still. Thanks to all who have been praying; if you don't mind, keep it up. I think he's over the hump but he still isn't fully himself. I'll send him back to school tomorrow and get PT, too, and see how he does with that.

Happy voting! Enjoy your American citizenship tomorrow. I am thankful to live in a country full of compassionate people who care so much about one little boy. Thanks for checking in.

Saturday, November 1, 2008 9:53 AM CDT

Kyle had a very rough day at home after the hospital yesterday with vomiting, diarrhea and feeling awful. I called his doctor in the afternoon, got some phenergan for him (for nausea), and he was able to keep some dinner down, and after phenergan, was able to sleep well with Pedialyte tube fed by pump. He did totally miss trick or treating, but he felt too lousy and had no interest in it. The sleep and hydration seems to have done him a lot of good, though, and I think he's turned the corner. He ate a good breakfast and looks much better! His only weird symptom now is a definite rash around his belly button. But compared to the last few days, we can handle that. Thanks so much for your prayers and warm thoughts if you've been checking in on him. I hope we return to boring again, and fast.

Friday, October 31, 2008 10:26 AM CDT

Kyle is home from the hospital as of yesterday evening. He seemed much better yesterday afternoon after they identified and cleared out the fecal impaction, luckily just with an enema. We were about to go home when he vomited again, but the doctor agreed to let him still go home, thinking he was just still a little tender and would be fine. However, he's still sick and vomited a lot this morning at home. We're trying sips of liquid just every now and then, hoping to keep him hydrated enough until he can handle more. Please pray he can stay hydrated and stay home. If not, it's back to the hospital we go! Not a fun Halloween for our pumpkin.

Meantime, I have potentially 15 or more kids headed to my home for a Halloween party tonight, and no way to contact them to say don't come. Oh well, it will all work out somehow!

Thursday, October 30, 2008 10:58 PM CDT

Update to below: Kyle just has a fecal impaction. I told them he has a history of that, but the doc thought it was an ileus obstruction due to the severity of the reaction. But Kyle is not typical, surprise. The good news is that an enema, bowel movement and ability to drink and eat without puking is the only thing standing between him and home. He's still tired and a little gaggy, but hopefully the enema will work and make him feel even better. The IV hydration has done a lot of good, and he looks himself again. If all goes as planned we should be home tonight, possibly, and more likely tomorrow. We asked continued prayers that he gets better quickly, and offer thanks and praise that all his counts are still beautifully normal.

Yesterday's news:

Kyle is in the hospital. I'm sorry I've been so late in updating; such a very busy fall for us. But as always, quick news is bad news, but so far, not too bad. Kyle was fine this morning and came home gagging, like drainage, which started at school. Within an hour he'd deteriorated and developed fever, vomiting bile, rapid heartbeat, paleness and significant lethargy. So off to the pediatrician we went, and we're now in the hospital, but not through the oncology admit. The pediatrician thinks this is an ileus virus, if that is spelled right, which if so, needs treatment by nothing per mouth and IV fluids til his gut can rest, then gradual reintroduction of liquids then solids. If this is right, it's hard on him but really not too serious. So that's our prayer. He also could have a blockage or a variety of other issues, and of course with the paleness, he's had a CBC. He's also had a stomach Xray and other lab work.

I should be trying to sleep, but I'll update again tomorrow. Darn, I much prefer to be boring. Please pray for our little pumpkin. He's been through so much. Ironically, this is exactly the same night five years ago he was diagnosed with leukemia and admitted to the hospital.

Beth

Tuesday, October 14, 2008 8:26 AM CDT

Hello! Kyle just finished his antibiotics for the sinus infection and seems to be doing better. He's eating again, thankfully. We did a food diary last week and I need to send that to the dietitian for ideas on how to up his calories as we are weaning him down to a lower pediasure quantity on his night tube feedings. I'm relatively sure I will hear nothing new from the dietitian that I haven't heard before during the child's long history of weight issues, but hey, it's worth a shot.

Kyle had a two-person play audiology test to try to get a better sense of his hearing. It seems as if he does have high tone hearing loss. Of course, his reluctance to focus, inability to do an action when he hears a sound, and gnat-like attention span do not cooperate well with hearing tests. So Kyle is headed for another, post-chemo hearing sedated ABR test at the hospital. No date for that yet. Kyle can hear voices well, but if he can't hear high pitches, he might have trouble hearing sounds like s, sh, etc. and thus have trouble forming words. He also sometimes does not respond to voice but does respond to sign, so all this could just be the autism but also could be hearing loss. I guess it's best to just figure that out, and the sedated ABR should give us a lot more info.

Thanks for checking in on our little peanut. It's a busy fall for the DeHoffs, but we're thankful it's been mostly healthy so far.

Wednesday, October 1, 2008 10:41 PM CDT

Well, fall is sure a busy time. No news is relatively good news, though! Kyle has been sick but not real sick for over a month, so we put him on antibiotics, suspecting a sinus infection. He has improved a lot, so we think we may have hit the right thing. This low-level illness tanked his appetite just as we were cutting back his g-tube feeds, so that plan was derailed a bit, but we're back on it now. We've cut tube feedings by 10-15 cc per hour at night and are trying to up his calories during the day. Next week I need to keep a food diary for the dietitian to review for other ideas.

I read some interesting research that shows some long-term effects of intrathecal (IT) methotrexate (mtx) - which is chemo administered via a spinal tap to cross the blood-brain barrier and help prevent the spread of leukemia cells into the central nervous system. Kyle had a lot of this through all 3.5 years of treatment, and the late effects sound very familiar and similar to Kyle's increasing issues that we're having a hard time addressing or figuring out. These include difficulty planning and organizing, trouble identifying what needs to be done, problems identifying the sequence of things to be done, difficulty paying attention, trouble evaluating themselves on how well they're doing on a task. These symptoms tend to show up gradually over time and often don't fully manifest til about 2 years off treatment. All this could be a description of Kyle and some of his issues, to a degree at home but especially in school.

Of course, these things could also be due to a hearing problem, and he still hasn't passed a formal hearing test. He has a two-person play audiology test Oct. 13 to look more into that.

That's all Kyle's news. Brandon is deep into marching band and Ryan is enjoying being on the Academic Pursuit team. On Sat. Oct. 11 we all walk in the Buddy Walk for Down Syndrome Indiana. If you'd like to support programs and services for people with Down syndrome and their families, you can support Kyle's Buddies in the walk. Just go to www.downsyndromeindiana.org, then select Buddy Walk, then select Sponsor a Team from the left menu. At the pull-down menu, scroll to and select Kyle's Buddies, and follow the instructions. Thanks!

Enjoy the fall. It's been lovely here in central Indiana, and we feel blessed by each day together - one "late effect" of cancer in the family that I hope never goes away.

Friday, September 12, 2008 7:59 AM CDT

Kyle's cold continues to hang on after his illness, but it's not too bad. His blood counts were again blessedly normal last week, so no news on the leukemia front, which is decidedly GOOD news!

An appointment with the GI office led to the decision to cut his night Gtube feeds by about 25% and see if he can continue to grow. It's the first step in what will likely be a long journey to get him completely free of the gtube. It's a nice step, and we pray it goes well.

Since his illness in the last few weeks, he's taken to feeling my forehead with the back of his hand, looking concernedly at me, and then laughing. Silly nurse Kyle.

Hearing test looks set for mid October. Otherwise, we live life, full of work, school, band, volunteering and appointments. The special needs ministry received a Champion award from Noble of Indiana last night. I'm now on the United Methodist National Task Force for Developmental Disabilities. Meanwhile, to keep things in perspective, I continue to have no luck at all with potty training.

Thanks for checking in on our little wonder!

Wednesday, September 3, 2008 11:46 AM CDT

Thanks for checking in, it seems like updates come every couple of weeks now. Kyle had his first big illness since finishing cancer treatment, which involved drainage, gagging, vomiting and 101.8 temp at an amusement park this weekend. Not very amusing! (Although watching people scatter as I wheeled a little boy covered in vomit into the women's restroom is a little humorous in retrospect.) Seeing him lethargic and unwell brought back icky memories, but the good news was that the fever did not send us directly to the hospital without passing go, and it also went away on its own. Kyle is on the mend now.

I'm still waiting for his hearing test to be scheduled. He'll get his quarterly blood counts/checkup this Friday, so I'll update about that soon. Kyle's Buddy Walk is Oct. 11; if you'd like to donate or walk with us, just go to https://www.indianadsf.org/buddywalk/participant.cfm?type=team&userID=169

Work, school, and Brandon's marching band are keeping us all busy, as is a busy month in the special needs ministry. But I'm happy to report that the national political scene is offering much more drama than our little family at the moment. Many praises for that!

Wednesday, August 13, 2008 2:45 PM CDT

Kyle started school Monday. So far, so good. In the parent low self esteem category, he's using the potty well right off the bat at school; no luck at all on that at home. On the parent high self esteem category, he's not eating well at school. He is eating fine here most days.

I have to get on my soapbox and ask you to avoid the movie Tropic Thunder. It includes a very offensive portrayal and hate language re. people with disabilities. I love comedy, and I loved The Ringer, so I don't take these things too seriously. But I've seen the clips, and it's really bad. There is some national media about this, but not a lot, and disability groups are boycotting. Just doing my little part.

Work is busy and I'm again paying off Kyle's siblings to play with him/keep him out of my office sometimes. Though he qualifies for respite services, we can't find anyone. I fired one agency after they failed to show up twice (once when I was in Richmond and had called twice to remind them). Then the new agency tried for 2 months to staff our after school 2x/week times and just called and said they can't. Lovely. On other less than cheery fronts, Medicaid has denied his PT and OT, and we're trying to get that back and are just waiting. Yuck. I haven't had the time to stew over it though. Hmmm, no time to be depressed - is that a good or bad thing? Hah.

Actually, I attribute the persistent optimism to the grace of God and the knowledge that my kids are alive, my family intact, and my God very, very good. Thanks for checking in!

Wednesday, July 30, 2008 5:54 PM CDT

If you haven't noticed yet, Kyle has a new pic on the home page above. Now you can at last see our handsome young man with a full head of hair. He is a very handsome 8-yr-old! I hope to get some new photos in the album in August.

Not the best news today, but certainly not anything as dire as leukemia. Our hope was that Kyle would pass his hearing tests with flying colors after the ear tube surgery, but alas, no. His tubes are fine and the fluid is drained, hooray. But he had a hard time hearing soft sounds in the booth, and he had no audio emissions. Of course, he had the attention span of a gnat in the booth, so who really knows. And a small percentage of people with no emissions (like an echo feedback) in the ears have normal hearing, but most people with no emissions have some hearing loss. A review of his charts revealed that he had no emissions at age 2, either, and he has never had a test that showed normal hearing, despite the hearing hoops we've jumped through. So in a couple of months we will try the 2-person play audiology test, in which 2 audiologists will go through various audiological gymnastics trying to get an accurate hearing test on Kyle. Kyle certainly marches to the beat of his own, mysterious drummer, so while you're praying for Kyle, you might throw in a prayer for these two audiologists. They may need an extra dose of patience. Luckily, he's very cute (see above), which face it, makes up for a lot in this world.

The ENT MD and I also discussed sleep disorders, since Kyle goes through something of an Olympic floor exercise routine in bed while he sleeps, he wakes up at night at least sometimes (a fact revealed to us on vacations, but since Brad and I sleep like stones, one we can't attest to on a nightly basis). He's also sleepy a lot and, as I mentioned before, has the attention span of a gnat, which can be the result of a sleep disorder. Kids with DS are way more likely to have sleep apnea than others, and much less likely to show obvious symptoms, so thus the question. However, a sleep study involves pasting lots of electrodes all over the child, including on his face, and if you know Kyle, you know that would go over about as well as suggesting he walk across a firelit bed of coals. There's an overnight bracelet that can monitor for apnea at home that is awaiting FDA approval, so we're thinking we will wait for that unless something more alarming shows up.

This is not a boring update, which makes it very annoying to us. As I've mentioned in the past, after leukemia treatment, we're rather fond of boring. But we press on, ever mindful and thankful that hearing and sleep issues are not life-threatening. God has seen Kyle through to be the stunning little boy you see above; I'm sure he'll see him through this as well, and us along with him. In the meantime, we prepare for school starting in a couple weeks, and enjoy our last days of summer. Hope yours are blessed with all you desire, or even better, all that God desires for you.

Tuesday, July 15, 2008 2:33 PM CDT

Summer is so very busy; sorry for the long gaps in updates. See the new home page photo! Hope to update more photos later.

Kyle has had an eventful week. Last Tuesday was his ear tube insertion surgery. That went pretty well. I ordered Versed to calm him before the mask anesthesia (not a good thing for someone with sensory defensiveness around his face) and zofran for the pukies after surgery. All from my cancer experiences with him; all great meds for him. The surgery staff was wonderful and filled my Dr. Mom orders very willingly, bless them. It helped a lot, and other than coming back from surgery with a swollen eye that looked like he'd been in a boxing match, he did fine. The swollen eye was a big mystery and left as mysteriously as it came on. Kyle always has to have a surprise - as his surprises go, that one wasn't bad.

Today he had an augmentive communication evaluation, which is kind of a coup to get. The child clearly has a lot to say, but we don't understand a lot of it. He also clearly is using a pretty big but selective vocabulary, and he actually read the words pig and big the other day. So the hope is that some communication devices might help him. Getting these and trying them and seeing how they work, etc., will take some time, as in months, but at least we're on the road now.

We still hang out in the cancer world sometimes, and recently saw an Indians game and soon will be visiting Holiday World and a resort hotel thanks to foundations to help kids who have or have recently survived cancer. We thank these kind souls profusely. One foundation, the one doing the Holiday World trip, is Gary Brackett's foundation. He's an Indianapolis Colt. Go Colts!

And go Kyle. We'll have his post-surgery checkup and hearing check in about two weeks. I'll be sure to update after that. Enjoy your summer!

Thursday, June 26, 2008 8:33 PM CDT

Greetings. We are back from vacation and trying to adjust back to work, life and laundry. We jumped right into a week of Vacation Bible School, from which we escaped (I mean finished) tonight. Kyle is in the thick of day camp, and days of day camp and nights of Bible School, just after vacation, has him tuckered but pretty happy. Just one more week of day camp, then on to a more boring July.

I'm glad to say Kyle needed no medical attention on vacation, though I'm sure he had a fecal impaction which cleared once we got home. I'll spare you the details; suffice it to say that a very large, square peg can indeed come out of a small, round hole.

I hurt my back, so can't lift Kyle much these days. Fortunately Daddy and big bros are around this summer to help. Ryan has begun to learn french horn, and marching band is just a couple weeks away for Brandon. Church camp and mission camp are coming soon for our older boys, and the ear tube surgery for Kyle is just a couple weeks out. Already this summer we've seen our niece graduating from high school and our nephew married! Big days. Summer is flying! We hope and pray yours is sun-kissed and very blessed.

Wednesday, June 4, 2008 6:19 PM CDT

Kyle had his ENT visit today, and the fluid still swims in his ears. His ENT said it was the first time she'd written recurrent fluid for surgical reason, rather than recurrent infection, but leave it to Kyle to be just a tad different. Surgery to insert his second set of ear tubes will be 7/8. It's a simple outpatient procedure (hear that, Kyle?). I couldn't get too worked up about it; he's had it before, and after leukemia, I told the doc, it's hard to get too dramatic about ear tubes. She said she had just seen a girl for a surgery referral that had had brain surgery last year, and her mom had the same reaction. All a matter of perspective.

The hope is that the tubes will alleviate the fluid and help him hear better. We'll finally do the elusive 2-person audiology test after surgery. This is the test they wanted to reschedule last month, and I said why try it until we know if his ears are clear; thus the follow-up today. I did not say I told you so, but I will here. Mama knows best sometimes.

Kyle is poised to enjoy a flurry of vacations, theme parks, and day camp before that surgical day, so lots of fun awaits. Praying for good health through it all, and thanking God for Kyle's ability to do it. What a long way he's come.

Thursday, May 29, 2008 3:56 PM CDT

Kyle had his first CBC in three months today - the longest he's gone without blood counts in almost five years! His counts were wonderfully, boringly normal. Praise be. Remember long ago when I said boring is good? It still is!

School let out yesterday and Kyle is at a loss today, listening to a lot of music, even though his morning was full of therapy and cancer clinic. We'll be celebrating my nephew's wedding and having vacations and other things planned in the coming weeks, so hopefully he'll be content. We just got approval and scholarship for him to go to day camp the last two weeks of June, so that should be great for him. His first camp!

I have had other teen boys hanging out here for more than 24 hours while trying to get work done and care for kiddo, too. Better go see if I can cheerfully help them find their real homes. Surely they have mothers.

Happy summer! God bless you, and pray earnestly for the families who have so recently lost their sweet children.

Wednesday, May 21, 2008 12:18 AM CDT

I put in the update below earlier today, but I just learned that another friend's son lost his battle with leukemia today, but won the ultimate victory. I have "known" Elijah's mom Dawn for a long time online, and I hope you'll join me in praying for the Carlson family and will just take a moment to take in Elijah's final witness, below in what his mom wrote on his carepage. It's a bigger witness from a not yet 3-year-old boy than many of us will ever give:

"Today, at 2:30pm our beautiful Elijah entered the Kingdom of Heaven.

Nate and I told Elijah to find Jesus, go find Jesus.

Elijah told us, "I see, I see."

I said, "You see Jesus?"

Elijah nodded his head, a big yes.

And then he was gone."

Dawn Carlson

It seems too breezy now, but here is Kyle's update from earlier today:
Hello! Not much news, so just a brief update. Kyle is doing well, still on Flonase, and still a little sinus-y, but overall well. Meanwhile, I have a sinus infection and bad poison ivy, so I'm more newsy than Kyle. But if that's all the news we have, it's a good week. Kyle did great in speech therapy today and imitated the words "pig walks." It's just imitation, but Kyle doesn't do well with subject/verb pairs, so that's a great thing.

School is winding down. Ryan had his field trip to Chicago yesterday, and I went along. Thanks to Grandma for holding down the fort. The fact that I spent the day yesterday on a bus full of 6th graders may explain my lack of energy and humor today, but I'm glad I could do it. Kyle is all set for second grade next year, and I'm trying to get his therapies moved to after school times when possible. Just found out today he gets a new speech therapy slot after school. Ryan will finish elementary school and head to the 7/8 grade center next year, and Brandon finishes ninth grade and heads to the big high school next year. Brandon turned 15 on Sunday!

Kyle has his 3-month cancer check-up May 29 and ear check June 3. I will certainly update again after those. Happy Memorial Day! We're remembering all our service people - and all those children we've lost to childhood cancer, too.

Monday, May 12, 2008 10:28 PM CDT

Kyle was full of hugs on Mother's Day; that was nice. All four of my boys were very nice to me, including Brad. We are trying to clear out the house of junk; nice, but makes more piles in the process. Sigh.

Kyle had a dr. appt today. He technically lost weight, but the scale and the office moved, so I think it shifted. Kyle's pants that used to fall off are staying on now, and I think he's gained. He has grown almost 2 inches since Jan. He has moderate fluid in one ear and less in another, so perhaps the Flonase is working. We'll see. This was just a pediatric appt. He had his first catch-up immunizations and didn't shed a tear. To a guy who used to be poked once a month to once a week, two little shots aren't much. Tough guy.

The dr. filled out a form for us to get a "handicapped" plate or placard. Finally it seemed like time. Kyle has a hard time with long distances on foot, and we're using the wheelchair in those situations, so it's something that will be handy. A lot of times if we park in a non-handicapped area, it's hard to get the wheelchair out of the area, because the barriers aren't necessarily wheelchair friendly since it's not a wheelchair area. So it's time.

In the coming weeks, Kyle will finish first grade, have a follow-up ENT appt, and his cancer checkup. He also may have a hearing test if ears are clear, and he's being scheduled for an opthalmology visit, too. Busy, but nothing scary. Hooray. Brandon is cleared for life without a back brace unless he feels he needs it, and unless the pain returns. More hooray. He's opting not to do gymnastics, though. Seems risky, and he's going into marching band soon, which requires you to give your left arm and your firstborn child. Okay, maybe not that much, but almost!

It's a sad week in the world of my fellow leukemia parents. Samuel and Craig died on the same day. This disease is still a terrible mess. Please keep these good, faith-filled families in your prayers. Thank you.

Thursday, May 1, 2008 10:49 PM CDT

I've spent a lot of time fighting for Kyle this week. Kyle's hearing test didn't happen because his tympanograms were flat, indicating fluid again, so I refused the test; what would it tell us? We were told to come back in 2 weeks, and I pointed out that if it hasn't gotten better in 2 months, what makes you think it would be better in two weeks. So he's on 4 weeks of Flonase nasal spray now to see if we can clear fluids, and then a recheck at the ENT before we go back for a hearing test. That makes sense.

Fight two is getting Kyle general education time in school next year, which became a major issue at his case conference. The issue is about 30 minutes of class time with his regular peers each day, after a very successful experience doing that in first grade, so it's not like we're asking for him to attend the rocket science class. And it's not like they'd pay an aide more than peanuts to go in with him. It's awful what aides are paid. They do such important work and could probably make more at McDonalds. Next time you see a special ed professional, hug them or at least say thanks. They face a lot of pressures, and I'm sorry, but I'm one of them when I have to be for Kyle. As the song goes, he's my son. As of today, I've talked to the assistant principal and have been assured that it won't be a problem. Squeaky wheels do tend to get the grease!

Kyle walked further than he ever has in his life at his field trip Thurs. He was very happy and very tired by the end. He seemed to have some allergy problems, which could be related to that ear fluid. We'll try to sort that out. Kyle's a puzzle that requires some patience. But his giggle today was priceless. And ears are ears. It's not cancer, and he's well. Please pray for Alex, Adam, Samuel, Ethan, Craig, and all the other families so needing prayer right now. And happy May to you!

Wednesday, April 23, 2008 11:39 AM CDT

Hello. Birds are singing, trees are blooming, and the sun is shining in Indiana. The special needs fair and the academic super bowl are both this Saturday, so life is busy. Kids things every night this week. Blessed normalcy. Kyle's ENT appointment went ok. He still has fluid, but not enough to warrant tubes again, at least not now. His hearing is still suspect, so he's scheduled for another type of hearing test next Monday. Other miscellaneous appointments are coming up too, taking us to about 4 appointments a week. And if you happen to be a client checking in, yes, I'm still working for you.

His health is pretty good, though he has kelly green poop - yes, the color of shamrocks - and threw up yesterday. Isn't that lovely? The grass is greening up outside, and so are Kyle's intestines. But otherwise he seems to feel fine, so we're just riding this out til it gets better or worse. He is eating very well, though sometimes when he's tired, he forgets to chew.

Please pray for Adam Effinger, who is working hard to recover from a horrifying car accident, and Alex Pellisier, who continues to struggle and prove that even tiny babies can have giant spirits. As I hear about these folks, and work so much this week for people with disabilities, it strikes me how God imbues each of us with a fully formed soul, no matter what our outer age or abilities are, giving each of us dignity and value and beauty. Wishing you a week of enjoying God's beauty in this lovely season, in yourself and in others.

Friday, April 11, 2008 1:37 PM CDT

Hello! Greetings from the land of messy house and distracted minds. Brad's prepping for Science Super Bowl and I'm prepping for a giant special needs fair at our church, and a church play, and with work busy and many kid things like Ryan's math pentathlon, Brandon's band and honor society stuff, not to mention his social life, and Kyle's choir and swimming, we are swimming in dust mites and subsisting on the hastiest of meals. I have to remember how awful it was being able to do nothing and go nowhere when Kyle was neutropenic. I have to remember the horror because now, just every once in a while, a day of going nowhere and doing nothing sounds kind of nice.

We are perpetually, annoyingly cheerful about Kyle's disabilities. They are a part of him and he is God's gift to our family in the world just as he is. But every now and then, it may get to us from time to time. Like last night. Brandon's band had a concert to show off their contest material. Kyle found this scenario to be an endless opportunity to chatter and stim loudly, flip the seat up and down, fling anything he could get his hands on into the seats of the people behind us, pet the hair of a man sitting in front of us, etc. Oh, that and occasionally dissolving into tears (quiet ones, thankfully) when he was corrected frequently(also quietly, given that we were in the midst of a concert, that the director of which informed the audience that we should treat this as a professional symphony performance - and I'm pretty sure parents aren't screaming at wailing children in the middle of a symphony performance). Now, understand, we're really grateful to have a much healthier child who has the energy to get rambunctious, but normal kid energy combined with all the oddities of autism and the seeming inability to internalize any discipline, whether it's positive distraction or raging at full voice, sometimes takes its toll. Yesterday, we put our gift from God to bed with almost as much gratitude as we feel about having him with us!

May every trial be tinged with gladness that you and your loved ones are present to bear it together. Please pray mightily for Elijah and Craig, who are facing a grim leukemia prognosis, and Melissa, who lost her battle, and Alex, our preemie friend still hospitalized after many months.

Wednesday, April 2, 2008 2:31 PM CDT

Just a quick hello and update. Happy April from the lovely 36 degree frozen tundra of spring here in Indiana. This is spring break, but we are not really breaking away, just taking a break. That's okay.

Kyle is doing well. The extra sleep on break does him wonders. He still has some congestion and is on the nasal sprays. But he's doing fine. It's World Autism Day today, and that sure is showing itself. Kyle is getting quite a vocabulary and is saying lots of rote (automatic) phrases, not necessarily at meaningful times, not in conversation. But the rote phrases he has are all so cute. So mannerly and/or positive. Here are a few of his favorite things to say these days: "Hi. How are you?" "Thank you. You're welcome." "Bye. Have a good day." "Hooray." "Yea!" "That was great." "Wow." "Good job."

This is fun to see. Otherwise, we have to make an appt with his ped and determine his vaccine schedule and whether or not to check his immune system. He's due to catch up on what he missed since getting leukemia. His developmental ped feels we should approach vaccine catch-up very carefully. I always thought the vaccine controversy was just from parents, but it seems there are some good developmental peds with some concern as well. We won't avoid vaccines; they are too important. But we might approach it slowly, one at a time.

That's about all his news. So, as Kyle would say: "Bye! Have a good day!"

Wednesday, March 19, 2008 1:33 PM CDT

Kyle had his annual appointment at the Down syndrome clinic today. He gained some weight, hooray, and we all agree that the Abilify is doing well for him and his health has improved. Hooray. One red flag is that he seems to have fluid in his ears and issues with his hearing. We already knew he had some high tone loss, but this loss looks like it could interfere with speech and language. So, he needs to be on a steroid nasal spray for 4 weeks to see if we can get the tissues to get less inflamed and fluid to drain better, and then we'll recheck everything. It's probably a fluid issue, so we'll see where that goes, but chemo can also affect hearing, so that's a possibility too.

Speaking of dastardly chemo, Kyle's developmental pediatrician said he's looked into it and found info about other kids with DS and leukemia that have shown signs of autism after cancer treatment. He said there is no similar correlation for typically developing kids. He feels certain that the chemo led to the autism, which I've always suspected but never had anyone tell me that there's any info available about it. So perhaps Kyle is not the only DS/ASD/leukemia kiddo around. His doc said he was expecting such good things for Kyle's development before the leukemia hit, and he's sorry we have this to deal with now. He also said he expected Kyle's autism symptoms to improve with time. Not sure how he can know that, so I'll take it with a grain of salt, but hey, I'll also take hope wherever I can find it. He also felt that Kyle doesn't really have attention issues as much as that he loses engagement (participating in life) when someone isn't actively engaging him. He would like to see him have a one on one aide at school. I somehow doubt the school will be anxious to agree.

He had a blood draw to check his thyroid levels, an annual thing for people with DS. We also got some advice on how to catch him up on immunizations (slowly, one at a time, perhaps wait on the MMR). He hasn't had immunizations since he was 3 because you can't get them when you're on cancer treatment until a year off treatment.

I'm rambling and have much to do. Clients await. Please continue to pray for baby Alex Pellisier. He made it through a very rough weekend but is still in critical condition.

Have a blessed Easter weekend. Wishing you the hope and love of Christ.

Thursday, March 13, 2008 4:50 PM CDT

I feel like the official medical chauffeur this week; Kyle had 5 appointments, Brandon 2, Ryan 1. Dentist was all for B/R, plus an ortho visit for Brandon. Brandon's stress fracture is showing signs of healing, but it's still there, so he is still in the brace and restricted. Nevertheless, the signs of healing are very good news.

As for Kyle, 3 appts were therapies, so that's normal, and the other 2 were with his GI nurse practitioner and his new psychiatrist. Both went well. The RNP feels that since Kyle seems healthy and since his height and weight are proportionate (both tiny), we don't need to run screaming into the night about his lack of rapid weight gain. We follow up with the GI doctor in six months to revisit that. Meanwhile he stays on Miralax periodically to keep the rivers flowing, so to speak. The psych. appt. was just to get a new one after an insurance change, to monitor his Abilify med and any other med needs. When asked what Kyle likes, I described his active loves of school, therapists, hippotherapy/horses, adaptive swim team, church choir, and music and TV and his family, and she told me that we were doing a great job and she couldn't add any more. Good thing; we don't really have room to add more!

Next week he has his annual Down syndrome clinic visit. But overall, he's shiny haired, bright eyed, and pretty happy. He finished chemotherapy one year ago last Sunday, 3/9. It's a lovely 60 degree day here, and this evening he had fun swinging and kicking a ball in the backyard. I drive by the children's hospital, where we spent so much time, at least twice a week, and thank God profoundly that we are driving by, going home to kick a ball and clean mud out of the house that the dog brought in. Oh, what blessings the mundane living of life can bring, if only you have suffered enough along the way to appreciate it. Reminds me of the suffering and ultimate victory of Christ this Easter season.

Thanks for checking in. Please continue to pray for baby Alex. He is fighting for his life, but faces many obstacles. His parents are a faithful, tired, wonderful couple.

Thursday, March 6, 2008 2:16 PM CST

Kyle had a good appointment. All bloodwork, or all that is major, came back fine, and the echocardiogram is normal in all the ways that would concern us. Kyle is never totally normal, so we settle for normal in all the ways that count! We aren't all that fond of normal in other ways, anyway.

The only thing that was disappointing is that he has gained no weight. He's getting taller, but is still 36 pounds. He has a GI appt next week, so we'll see if they have any suggestions. He also sees his new psych next week, and his developmental ped the week after. Busy, busy! He started his adaptive swim program, which is 8 weeks long, and he loved it. Last year, he spent at least 4 weeks clinging for dear life to his volunteer and crying occasionally. About halfway through, he started to relax and ended up really liking it. This time, he was excited to go and liked it right away. He's even kicking and participating in the exercises. Woo hoo. Yesterday, he also had his first real haircut in a very long time. He wasn't real thrilled about that, but he did okay, and he looks really cute with a properly done 'do. (I think when it comes to haircutting, I shouldn't quit my day job.)

I'm off to Math Bowl for Ryan soon. Brandon's CT scan went fine, but no results til Monday. Thanks for checking in! Continue to pray for Baby Alex, please. Thanks!

Wednesday, February 27, 2008 2:19 PM CST

Hello. Kyle is doing pretty well. He will have labs and an echocardiogram this Friday. That was supposed to be next week, but between our schedule and the clinic's, it's this Friday. The reason for the echo is that he is one year off treatment as of March 9! Can I have a big WOO HOO!!!?? So, we check his heart to be sure there has been no damage. He'll also get extra, annual labs. On top of those, the GI nurse practitioner wants additional labs, and we'll see her again the week of March 10. That is to follow up on the constipation issues and also on his lack of weight gain - the dreaded "failure to thrive" label. Kyle gets that label tagged on him every few years at least. I personally think he's treating life like a video game, and every time he's tagged with a new label he gets bonus points, and if he gets any more than once, it's worth extra bonus points. He must be at a master level already.

Next week, Brandon gets another CT scan on his back, though we won't know anything til we see the doc the following week. He still has pain when the brace is off, so unfortunately, we're not feeling very hopeful about this.

Ryan is blissfully boring, and we pray he stays that way. He turned 12 last week. We spent several days in various phases of partying, and I'm very pleased to be party-less for the moment. It was fun, but six preteen boys are enough to keep you away from entertaining for a while.

Please pray for baby Alex, still in the hospital battling multiple preemie issues. He has a cold and was intubated today. Premature infants are a lot like kids with cancer, in that "little" things like colds can be devastating. As I thank God that for us, a cold is again just a cold, I pray that baby Alex will weather his and rally again.

News on the echo, lab results, etc. coming next week. Thank you and blessings!

Tuesday, February 12, 2008 7:13 AM CST

Update Wed. 2/13: Happy Valentines! Kyle is clean as a whistle. I took him in for an Xray today; he had terrible diarrhea yesterday and this morning, and nausea. The GI was sure he was very impacted. Turns out, he was very clear, and the Miralax was making him sick. Sorry, dear, but that's what they told me to do to you! So we wait for his GI tract to settle down and then probably try him on a low dose of Miralax every other day to keep this from happening again. Hooray. For details of the concerns, see below.

Tues. 2/12:
There's a scene in the play "The Diviners" that goes like this:
Goldie: Buddy, if you drink too many root beers, you will make yourself irregular.
Buddy: You regular, Dad?
Ferris: Hell, I'm fine.

In that regard, Kyle is not fine. Constipation sounds like such a minor thing, but over several days, it adds up to nausea, vomiting, feeling bad, and an impaction with stool all the way up and down the colon. That is where Kyle is. On Friday, an Xray showed that scenario. We had this little adventure in the outpatient area of St. Vincent Childrens Hospital, actually the Peyton Manning Childrens Hospital at St. Vincents now, which brought back memories both good and horrific. Choosing to go with the good, we appreciated the nice people who live to serve children. After the xray showed an impaction (which was gratifying, in a way, since I'd spent the previous three days trying to convince various doc offices that he was impacted), we saw the GI doc office and sprung into a routine of wildly upped Miralax. This produced a ball that is probably Major League-worthy, and lots of loose stuff, but by Monday he was nauseated again and had the same symptoms. That's when I found out the impaction was all the way through the colon, since the nurse practitioner told me on the phone that the loose stuff was likely coming around the impaction, and that the solid stuff would have to go way beyond the Major League ball. So, off we go again to more adventures in Poopland. An enema yesterday (doesn't this sound FUN???) and and lots more Miralax are the drill now. So far, not much has happened. If it never loosens up, he'll have to have it removed in the hospital, but we're hoping the earth moves way before that becomes necessary.

This is a story in progress. For more scoop on the poop, tune in later this week. In the meantime, Kyle is nauseated but otherwise pretty happy. He even had his teeth cleaned yesterday, with people and instruments and yucky gel poking all over his mouth, and didn't make a peep. He even joined the office staff later and endeared himself to everyone. The dentist said, "Is he always this good?" I laughed and said, "Well, truthfully, no, but he is a sweet boy." Maybe being regular isn't all it's cracked up to be.

Monday, February 4, 2008 10:04 AM CST

Thursday, Feb. 7:

Latest news is that Kyle's counts are fine. Platelets are down about 100K but still are completely normal. His biggest problem is that he's nauseated in the AM; he threw up a lot on Wed. AM. I suspect he has a fecal impaction; it's been 5 days since a BM, and that was of an impressive size reminiscent of a cow flop, for those of you with rural upbringing. Anyhoo, we're pretty concerned about this. He's had Miralax twice and will soon get it again. He's not a happy camper, so let's pray for things to get movin' on out soon, and I don't mean the Jeffersons!

Monday, Feb. 4:
I'm overdue. Sorry. I'll add a little Thursday to the top of this after Wed. cancer clinic check. But here's Kyle's news of the last week and a half. He's doing so much better. The drug that caused him so many problems finally cleared out and he is back to himself. Eating, smiling, laughing. Welcome back, sunshine!

He's not quite boring enough, but oh well. He popped up a blood blister on the top of his foot this weekend, of mammoth proportions. It was nearly an inch long and bubbled up high. I'm sure this is from orthotic foot braces that dug in the wrong way, which I'm calling about. Still, though, a blood blister in a leukemia survivor is cause for an eek!! when you find it. I quickly searched all skin for signs of petichea (blood spots under the skin, for the unindoctrinated), which is how Kyle's leukemia originally presented. No other signs are there of low platelets, though, so I'll hang on til the appointment Wednesday, reasonably sure all is well.

Saturday night he graced a friend's party with uncharacteristic nastiness, hitting a 23 month old, another child (both children of a friend - hopefully not a former friend), and hitting me, and crying a lot. Needless to say, he made an early exit. He was exhausted for some reason and slept on the way home. That, and the strange environment with none of his comfort items, could explain the monster act. It's a common thing in autism, not easily responsive to correction, and super hard to ask people to understand. However, we had church in the AM and some friends over last night for the Super Bowl, and Kyle was back to his sweet self. Stick around, sunshine!

He's having trouble with morning nausea. Will ask about that and fatigue and blood blister at clinic Wed. Hopefully it's nothing. In the meantime, Ryan is struggling to regain energy after battling strep throat, so we're waiting to see if he's bouncing back or needs to return to the doc. Brandon is recovering from his fatigue and sore throat and seems to be on the upswing. Parental units are stubbornly fine. A tornado hit about a mile or two from our house, but we had no damage, and no one was hurt, thankfully.

Thanks for checking in. Pray for Matthew, Alex, and kids in general. We hope you and yours are doing well.

Thursday, January 24, 2008 11:52 AM CST

OK, it's Thursday, so new update! This actually has been a heck of a week for Kyle. No cancer, though. It's my new measuring stick; a little parting gift from Kyle's cancer journey. Always in the throes of something that stinks, you ask yourself (or at least I do, in my compulsion to find something optimistic), "Is it as bad as cancer?" Invariably, the answer is no, and you suck it up and move on.

This past weekend, Kyle had a very strong reaction to his new med. It wasn't as bad as cancer, but these days were worse for Kyle than many of his ho-hum treatment days, so it still was hard. This drug was to see if we can improve his attention time and concentration, and it's an ADD drug. Well, goodness, it's like we gave him something to make it worse! The poor child was desperately moving from thing to thing, couldn't focus more than 10-30 seconds, was easily in tears, was pushing, hitting, etc. Even worse, he stopped eating, was nauseated and gagging like the bad chemo days, and seemed to have a headache. At one point he even seemed to be hallucinating. He couldn't sleep well, either. This peaked on day 2, we gave day 3 to see if Kyle just needed to adjust, called on day 4 and stopped it. Kyle's nausea and headaches and the worst of his behavior stopped quickly, and the rest has gradually improved. Now, he's back to normal, though he's tired out from it all and has a cold. Now, let me caution you that these drugs help a lot of children. Just not mine. So his doc and I agree; no more ADD drugs, nuh uh, never. Sorry, my little man. We really were just trying to help!

I don't think I mentioned that Kyle is down a pound in weight, so we are back on weight watching - and not the kind most of us do. But since he was sick in Dec., it's not too surprising. I still would like to find a way to eat cookies and donate the extra weight to him. Alas, no breakthroughs.

Well, that is far more newsy than I care to be. Hoping for more boring, blessed days ahead. If you are bored, thank the Lord! While you're tuned in, please pray for Matthew; he's due to get his bone marrow transplant at 3 a.m. Friday, and he's struggling with all that comes before it. Please also pray for little Alex, who made it through his surgery and needs God's healing power. Thanks!

Thursday, January 17, 2008 3:01 PM CST

Okay, gang who still visit here. My new update day is Thursday. Every fourth week, Kyle's clinic visit is Wed., and therapies are Tues/Wed, so Thursday is newsiest.

Kyle starts a new med tomorrow to try to help him focus. We should know quickly if it's helping or hurting, and can take him off quickly if needed. We'll see. Our insurance changes Feb. 1 and we have to get a new child psychiatrist, which is a bummer. I actually like Kyle's child psychiatrist, and since any of you who remember my stories of the Surgeon from Hell know how awful it is (okay, how awful I am) when I don't like a doctor, I'm just really sorry to have to change.

Please pray for baby Alex; his risky surgery is tomorrow, Friday. Please also keep Brandon, our oldest son, in your prayers. His stress fracture is not healing and he has more restrictions now, and will repeat the CT scan in 2 months. This sucks for my very active teenager.

I was asked to write an article about down syndrome and autism, and an upcomoing conference about it. I haven't gone into the autism much here, but this gives you a sense of it. If you want, read on. If not, just have a blessed week.

Riding the road of DS-ASD
By Beth DeHoff
My son Kyle, 8, is a collector of labels -- first Down syndrome, then leukemia, and this summer - autism. In many ways, this autism label changes very little. Kyle is uniquely Kyle and we love him just as he is. We are happy to ride along this road with him.
However, autism isn�t really just another diagnosis. Suddenly we knew why Kyle was testing as intellectually average on nonverbal IQ tests but yet was speaking very little and was way behind on grade-level standards. We understood why he was content to hum and flap his hands and spend long periods alone. It became clear why, despite his strengths, Kyle was watching his same-age peers with Down syndrome quickly pass him by.
The autism diagnosis explained a lot. It was also a sad realization that Kyle�s many strengths and obvious inner joy was at least partly locked inside of him. I�d often said about him, �I know it�s in there; we just can�t figure out how to pull it out of him.� I didn�t know I was having the universal experience of a parent of a child with autism. But knowledge is power, and with the diagnosis comes new hope for helping my son as much as possible.
As we began to suspect autism, I read a lot. Not much is out there about Down syndrome and autism spectrum disorder (DS-ASD). I read parent comments about how alone they felt; how they just didn�t fit into groups of parents of kids with DS or in groups of parents of kids with autism. Some talked about how their DS parent group had no interest in or understanding of autism and families coping with a dual diagnosis.
Once again, the Indiana Down Syndrome Foundation is setting the curve and working hard to help families. At about the time Kyle was diagnosed, Jan Huffman (IDSF board member and parent network coordinator) was hearing a lot about autism from some of our Indiana families and others on a national DS message board. She asked Rich Schreiner, MD, also a board member, about getting a doctor for a parent meeting on autism and DS. People at Riley had been discussing doing a conference on that very topic!
Before long, an IDSF parent meeting focused on getting input from parents concerned about autism in kids with Down syndrome. They asked what we want to know and what we�d want out of a conference. Now, on Saturday, March 1, 2008, Riley Hospital for Children at Clarian North will be the site of a conference on Down syndrome and autism, focusing on behaviors, communication, and more. The conference is co-sponsored by IDSF and Riley�s Christian Sarkine Autism Treatment Center. If you are facing this diagnosis, or wondering if it might apply to your child, I encourage you to go. (See conference information.) Some of the parents planning to attend live well beyond Indiana�s borders. This conference is helping to fill a great need.
For those familiar with the Emily Perl Kingsley essay �Welcome to Holland,� having a child with Down syndrome and autism isn�t Italy, and it�s not Holland, either. It�s a kind of remote island, with rough terrain and beautiful scenery. It�s filled with people who, like any parent, love their children fiercely and who find some very special blessings in living life with their child, no matter what the bumps in the road may be. Thanks to the IDSF for helping us learn to navigate that road.

Thursday, January 10, 2008 2:45 PM CST

Hi! Hope you all had wonderful holidays. Sorry we have been so very out of touch. We had a nice Christmas and a wonderful trip to Orlando! It was Kyle's wish trip, and we stayed at Give Kids the World (GKTW) for six nights and Nick Hotel for 2, and we visited Disney, Universal, and SeaWorld. Kyle got to meet Minnie, Mickey, Pluto, Goofy, Mary Poppins, Blue, Dora, Barney, Spongebob, and Rugrats. The parks let us in fast lines or in front, which was helpful since the parks are so very busy that time of year. Universal was especially wonderful to us. Kyle met Barney at Universal, in a special meet and greet just for the kids there on wish trips or with disabilities. He LOVED it. In addition, Give Kids the World (GKTW) is such a wonderful, love-filled place, and we enjoyed a wonderful villa, free meals, free ice cream, gifts, parties and more. The volunteers there are aptly named angels, and they were so very nice. If you could take the spirit of Christ and put it all in one place, that's what Give Kids the World is like. Kyle cried when we left. I don't blame him. I could live there, too.

We are very grateful to the wish organization, Kyle's oncology team, and all the sponsors who made it possible for us to do this trip. To see all the kids there who are recovering from, battling, or losing to a life-threatening illness is both sad and life affirming. To know we are a part of that community is sad and sobering on one hand, but humbling and an odd sort of blessing in another. Kyle got a wheelchair right before we left and it was great; it really helped him enjoy the parks. We chose life, joy, and love there, and hope to choose that every day, and not to focus on what's wrong. There is so very much that is right.

One of the things that is right is Kyle's counts. He had them today and they are very and blessedly normal. He was sick over Christmas but responded well to antibiotics and the Florida climate.

Please pray for some kiddos I know who need your prayers: Alex Pellisier, Jillian Morgan, and Erin Tinsley. Thank you and have a blessed new year!

Monday, December 17, 2007 12:18 AM CST

Lots of good news about Kyle to report! His counts were awesome, like any normal, healthy kid. Praise the Lord! His birthday 12/13 was fun. For the first time, Kyle seemed to understand that it was his special day, and he loved the school party, the bus ladies singing to him, and opening presents at home. He chose to have his birthday candle in yogurt; not the most stable of foundations, but we managed. He is looking like such a big boy; I'll update pictures in Jan. if not before.

I just picked up his first wheelchair. Kyle outgrew the stroller, and it broke, and we had nothing that was working well for him. Through his new Medicaid waiver we were able to to get a wheelchair, and I picked it up today. It's red and sporty (its called "Sport") and is kind of a cross between a stroller and a manual wheelchair, and it will accommodate him up to 100 pounds. Since he's 37 pounds now, that should last a while! Kyle is walking well but tires over any distance; even a grocery store is too much to walk, and he really can't walk zoos, museums, etc. This will be perfect for all that, has tough wheels to go over dirt and gravel, and will be WONDERFUL to have at Disney! The wish trip is coming soon!! Pray we all remain in good health and that Kyle has the time of his life, and our other boys too.

Thanks. Have a blessed Christmas season. Please pray for the Debes family; they just lost their daughter Ashley to relapsed leukemia. So many kiddos could use our prayers, too; please remember all those strong, small spirits fighting cancer now. And hug your kids til they protest!

Thursday, December 6, 2007 8:22 AM CST

Kyle is doing well. He had a new IQ testing eval done, with a nonverbal test, which they do with kids with autism. Kyle had always tested as MOMH, which is moderately mentally handicapped. Neither we nor his teachers thought that fit, but he did not test well. What a difference the nonverbal test made! His IQ is in average range, with just a few on the mild MH side. So he no longer qualifies for special ed in terms of, to use an old term, mental retardation. His qualifiers now are autism, communication disorder, and other health impairment. This reflects all his issues, including the late cognitive and physical effects of cancer treatment, as well as the low muscle tone from Down syndrome. We all agreed that he has a lot of receptive language, but it's hard to pull expressive language out of him, which is typical of a kid with autism.

We had a case conference for him to change his eligibility, but I didn't want to have everyone throw goals for it together in short order, so we'll reconvene his case conference in spring to set new goals. I've been fighting a bus issue for Ryan, and after much frustration and taking the issue to the superintendent's office, it seems to be resolved. All this was fixed just in time, because yesterday I lost my voice. As you can imagine, not being able to talk is no fun for me. Kyle still is battling his cold, too, but it's getting better, slowly.

Kyle is looking cute with a new haircut, and his cheeks have color and some meat to them. He's such a joy (except when throwing and hiding our things), and we are grateful for each day. Wishing you a blessed season as we approach Christmas. Kyle's next physical and blood counts at cancer clinic are Dec. 12, and I'll update again after that.

Thursday, November 29, 2007 7:42 AM CST

Hello! Just a quick note. Kyle is okay but just has a terrible cough and still nasal and eye discharge. He finished the antibiotic, so that's not it. No fever, and he's going to school, and isn't feeling too bad. His appetite is up and down, and I've had to increase his gtube feeds a couple of times, but usually it's okay. We keep waiting for it to get better or worse, but so far it's just hanging on.

We have a new case conference at at school that the school requested, changing his "label" from other health impaired to autism. He's also had another label before that. Kyle has so many labels to choose from, but they are only good for one thing: to get services. Otherwise, labels do no good and can do harm. He's just Kyle. But that won't get him services, so off we go. The autism label may qualify him for additional services, but we have to be cautious. I don't want him to get services just to have services. We like to stick to therapies and such that are clearly helpful, and let him just be a kid as much as possible. And really, he's doing pretty well.

His current behavioral phase involves throwing and hiding valuable household items. But kids with Down syndrome are so sweet, right? Right. So, I'm off to get some work done and find the remote. Wishing you many adventures as well.

Monday, November 19, 2007 10:42 PM CST

Never did update with Kyle's counts last week. They were blessedly normal! His cough and breathing worsened Tuesday, just in time for the clinic visit, so he's on Omnicef to try to ward off an infection; he's still immune suppressed. The Omnicef has caused a painful diaper rash, but that is getting better. An improving rash means that healthy white cells are available to do their healing hocus pocus. What an awesome sign of health that most take for granted. Cancer sucks, big time, but it certainly does pick up your powers of gratitude when things start working right! Other good news is that Kyle's weight is up another pound and a half!

Have a happy thanksgiving. It's Kyle's first cancer and treatment free Thanksgiving since 2002. If that's not a reason to be thankful, I don't know what is. I suspect he will even be able to eat some turkey. Praise the Lord whom we love at all times, good and bad, and who loves us so much more than that. Enjoy your turkey, and don't be one. Drive safe!

Monday, November 12, 2007 11:37 AM CST

Just a quick update. Kyle had a swim meet Saturday! His adaptive swim class ended, and all the kids "competed" in swim races with their buddies. No one kept track of who won, and everyone cheered everyone else. If the world could be more like that, we would be a better society. Kyle got his first trophy!

Kyle and Brandon are battling colds. I still marvel when Kyle can battle a cold instead of just succumbing to the worst possible version of it.

Bless you! I'll try to update regularly, but not bore you with details unless something happens. Next blood counts are in... oh wow, this made me realize that next counts and checkup are tomorrow! Will add the results of that tomorrow or Wed., then. Sincerely, Kyle's ditsy mom.

Friday, November 2, 2007 10:14 AM CDT

Happy November. I updated photos here and in the photo page - finally! Kyle enjoyed trick or treating, though he was really tired that evening and didn't want to walk. So, I just got the stroller out and off we went. He thought going to doors was okay, but wasn't too into it (after all, he can't eat most of what he got), but he loved the walk around the neighborhood. So I settled with following Ryan and friends around with the Adams and wheeling Kyle up to any stroller-accessible doors (no steps), which gave him his walk and an occasional stab at trick or treating. That went well. I asked him a few times if he wanted to go home, and he clearly said "stay here." So he had fun. I will forever be filled with gratitude on any Halloween I get to be with my boys and all are well. Four years ago, Kyle was in PICU and I was with him, two days after leukemia diagnosis, on Halloween night. Brad did Halloween with Brandon and Ryan. It was one of the saddest nights of my life. Now, however, Halloween is one of the brightest spots; a testament to life and how far we have come. Hallelujah, praise the lord. (And munch a Butterfinger.)

I think I reported that Kyle's last blood counts looked great. More praises. He only gained 2 ounces, which is not good, but the month before, he gained 2 pounds, which was weirdly wonderful. So no trends are to be seen, and we wait to see what the next couple months of weight checks bring. I really think something is wrong with that boy's GI tract, but will be patient and wait, since he's not in pain, not losing weight, and since not much can be done about most of those issues anyway.

Brandon is spending 23 hours in a back brace each day and night, which he is taking amazingly well. That's a strong guy I have there, in more ways than one. It's very tight and close fitting, so not very visible under clothes, which is a blessing to him at 14. He has a follow-up appointment next Monday, and we'll find out the results of the CT scan and make a plan for what's next. Since we got no hurried calls after the CT scan, it means they found nothing horrifying, so the rest we can deal with.

Overall, we are just so tremendously blessed, held so close in the loving arms of Christ, that I just hope you can all feel this love. Please pray for Matthew, Ethan, Ashley, Jillian, Thomas, and all the kids still fighting leukemia. Thanks.

Thursday, October 18, 2007 12:05 AM CDT

The week has brought test results and more tests for the two boys in my family now needing medical attention. Kyle's blood counts were great - blessedly normal. Hemoglobin was just a tad low, but not abnormal, and all else looked good. Explains his paleness but no cause for concern. (Except in the little recesses of a cancer mom's overactive and paranoid imagination, but really, I'm fine about it too.) Speaking of that cancer mom mind, that popped up fully when we were gazing at the results of Brandon's bone scan with his doctor, who kept pointing at an ugly black spot on his spine in the films saying, "that's positive." Finally I said "Positive for WHAT?" He said, "Oh, a stress fracture."

So Brandon has a stress fracture. This is a bummer for him. He has to be totally inactive (other than walking to and from where he needs to go) and lift no more than 10 pounds for three weeks. He had to have a CAT/CT scan yesterday and be measured for a brace. He'll be in a back brace for several weeks or months, and in three weeks we go in, gaze at the CT scan films, and determine when he can get back to activity, which will be very gradual and involve physical therapy. He had to quit the gymnastics team, though we have a kind offer to go back in for mild conditioning on a medical leave and free status when he's ready. He can't bowl, can't be an adaptive swim buddy, can't lift weights, can't run, can't swim. He is by far the most active and athletic member of our family, and so this is very depressing to him. It also has only about a 50% chance of healing. I am very sorry about it and sad for him. It causes concern for what it will do to him as he grows older; he could have chronic back pain. This is bad news, but it's not life threatening. When you've been told your child has cancer, other news kind of seems more manageable. So we'll deal with this as we bounce off into more repeated CT scans, a customized orthotic brace, and ongoing physical therapy for another child.

Kyle is happy and calm and more focused and joyful than in a long time. Better living through chemistry! ( :

Ryan is blessedly well. Grade cards are awesome; Ryan had all A's and several A pluses; Brandon had almost all A's and one high B plus. Kyle doesn't get letter grades, but he's progressing nicely, especially lately. Apparently it's better learning through chemistry, too.

Thanks to all of our friends who joined us in the Buddy Walk on Saturday. It was a lovely day, and we had 19 members on our team and raised more than $1,400 for programs and services for people with Down syndrome in Indiana. The walk had over 2,500 walkers and raised as yet unannounced dollars for the cause. More than that, people saw what fun that families blessed with a child with Down syndrome can have.

Bless you for caring. Take care.

Wednesday, October 10, 2007 11:12 PM CDT

Kyle is not the main news this week. Brandon has had three weeks of on and off back pain, and he saw a sports medicine doctor Monday and had a bone scan today. Missed school since the test involves going in for a dye injection and returning in 3 hours for a test that takes a little over an hour. He did great with it; such a toughie, that biggest boy of mine. We had a nice lunch together. I am not happy about seeing another child in a hospital testing room, however, and will be glad to get results Monday. It's probably a stress fracture or just some minor damage, or a structural problem in his back. Actually, those aren't really minor things, but they're not life threatening. We tend to call anything that isn't threatening to kill us "just" this or that; cancer gives you an odd perspective on life. Anyway, Brandon is doing pretty well and is just hoping he doesn't need a back brace. I'm hoping that's the worst it could be. A few prayers for Brandon would be most appreciated.

Even more in need of prayer is Matthew Fackler, my fellow Hoosier friend Nancy's son, who has relapsed for the second time. He just went off treatment for leukemia relapse in July. Now he's relapsed in his CNS and is testing to see if it's elsewhere; starting chemo again. Please pray hard.

As for little Kyle, he's doing pretty well! He's tired and has a little cold, but he's happy and cute and funny and is getting really thick hair again. He's really enjoying music and CDs right now and is starting to play with a few toys appropriately. He's handling the meds well, and we will see how things go. He goes back to clinic for counts and physical next week, and the med followup is the week after, I think.

Thanks for checking in on us. The Buddy Walk is this Saturday! Always a fun celebration of people with Down syndrome. What a blessing!

Thursday, September 27, 2007 7:16 AM CDT

Kyle is a very happy little guy right now. He is more settled, less anxious, and just more smiley. He's just more present in his world. Hooray. Makes up for his mom, whose work projects and mom duties have meant little sleep and a bleary-eyed perspective. At least someone is perky, and I'm delighted to see that it's Kyle for a change!

He saw his psychiatrist Tuesday. I wonder how many patients never say a word to their psychiatrist. He tried to ask Kyle if he felt good or bad, happy or sad. Kyle just smiled at him. Kind of funny. Most of us could probably take a tip from him; don't comment excessively and smile a lot. We all (family, school, psych) agree that the med seems to be helping, at least to a degree, so we're upping the dose in very tiny increments until we either see no further improvement or see a side effect. Chemo drugs are easier, in a way - look at the blood counts and adjust the meds accordingly. I read Kyle's report from the psych eval and it all seems pretty accurate. He's collecting more labels, like anxiety disorder not otherwise specified, and rule out attention deficit disorder. These are just sort of the side dishes of autism. I have lost any ability to be affected by labels. There are just too many. He's just Kyle. That's the only label that means anything to us.

Swimming was even better last night; less fear and more smiles even in the water. We're looking into changing his PT setup to a PT/hippotherapy combo. Hippotherapy is with horses. Waiting to see if that pans out. We would miss his current PT a lot, but we all think it could do him a lot of good. People have been recommending hippotherapy for Kyle since he was 2; it's just that health and insurance issues never worked out to make it happen. Maybe now it will.

Off to work, or to fall asleep on the work. Thanks for checking in!

Thursday, September 20, 2007 11:53 PM CDT

Kyle is full of good news! Remember the old good news, bad news format of the treatment days? Well I can do that again, but now I don't have to search for the good news; it's the main news of the day!

Good news:
1. Kyle has gained 2 pounds this last month! And grown almost 2 cm. I remember full years when he didn't gain 2 pounds! If he hadn't gained weight by this appointment (the six months off treatment mark), we'd be headed to a gastroenterologist. So good news all around!

2. Kyle's labs look GREAT! No abnormal readings that matter. I wonder how many people look at a CBC report and think it's beautiful? That's what this report is - beautiful.

3. Kyle is flapping, humming and grinding less. His teacher says he seems more aware of his surroundings and more verbally responsive. This is showing up this week, which is 2 weeks after he started the Abilify. So with our hunch and the teacher's observation (unsolicited), I think we can conclude that the new med is making a difference. We follow up on that with the psychiatrist next week.

So that's all just wonderful, encouraging news. The only bad news:
Kyle is very fatigued. This evening he fell asleep in the car, and when I tried to wake him to go to the grocery, I could not rouse him with any amount talking and touching. He was very floppy and unresponsive. Had to carry him in and he just clung to me a long time. But then he woke up and was fine all evening. I think school and activities are wearing him out, and the med might have something to do with it, too, plus the residues of chemo. Cancer survivor fatigue is a documented thing.

In other news, Kyle is on a swim team. This is a misnomer, it's really an adaptive swim program for kids with disabilities, and Kyle's main goal is to get comfortable in the water. Right now he has a lot of fear, but he's doing pretty well with the volunteers, and it's neat to see. Brandon is a volunteer swim buddy, working with another child. It's great physical therapy experience; the program is run by a PT, and Brandon is interested in that field as a possible career choice. Also, while they're there, Ryan can swim for fun. So it's a big weekly swim night for all of them.

Work has kept me from updating much and prompted this 1 a.m. report. Hope I'm making sense! Thanks for checking in. Please pray for Ashley (leukemia relapse and complications) and Alex (very premature baby). Have a good week!

Tuesday, September 4, 2007 10:35 PM CDT

Okay, please look at the new video above. If you can't play it, just take a moment and go to this link:

http://www.youtube.com/watch?v=AGS4yE5v9rM

It's an awesome and honest look at childhood cancer. Kyle is in a brief photo clip at about 3:05 into it. He's unrecognizable to those who know him now - bald, lying pale and old mannish in a hospital bed tied to IVs, wearing an orange shirt, looking awful but with a small smile on his face and a Blues Clues notebook in his hand. I'm proud to have him be a part of it. He still sleeps with the quilt and blankie in that picture, still fits in the shirt. Still smiles despite whatever life has thrown his way. His cognitive issues aren't just Down syndrome or sudden autism; it's also from late effects of cancer treatment. Some kids pay a heavy price for survival. Others pay even heavier prices for not surviving. More research is needed for better survival rates and better treatments to preserve quality of life. So check out the video, be moved, and if you want to know more after that, check out curesearch.org.

Off my soapbox, but hey, if I dont' stand on it and shout when parents go to the effort to create a compelling video like that, who will? As for Kyle, he took his first dose of Abilify tonight. I'm up to check on him and will be with him tomorrow morning. It's a low dose and will likely move up. We will see. We had a nurse stop by and intake Kyle for limited respite care hours. This will be odd. Nice, but odd. And the school psychologist called and wants to re-eval Kyle and see all his autism evals; if we decide to go with autism, that will be his primary school label. She's trying to figure out what IQ tests to do; hard to IQ test a kid who knows his letters, numbers, colors and shapes but won't point to a picture in a test when asked to. Again, taking it a day at a time. Sometimes life seems to rush right in like a big ocean wave, and you can either fight to get through it or just take a deep breath and wait for it to wash over you before you pick up and move back to shore. I'm waiting and getting washed, as much as I can, and will try to let God swim the hard stretches. He's a much better swimmer than I!

We had a nice weekend with my mom and family. Now we are back to the work and school grind with the other oddities of life marching on as well. Just keep swimming!

Tuesday, August 28, 2007 12:31 AM CDT

I'm late. Work is just crazy now and I'm busy with that and being Mom and the ministry. But we're here and hanging in! Kyle had great blood counts and is in great shape from a cancer perspective. Praises! Today he had his second opinion visit on the meds with a child psychiatrist. Ah, a new specialist. Just what we needed. But actually, this was very helpful. He explained everything to me in painstaking clinical detail, which I love. (Sick, I know. No cure for it, though.) He agrees Kyle is somewhere in the autism spectrum. Kyle couldn't have performed better if he planned it. He spent the hour stimming, flapping, humming, and grinding, fixating on objects, and mostly avoiding contact with the doctor - but also dancing, laughing, and repeatedly hugging me, petting my hair, and gazing lovingly into my eyes. The doctor said he doesn't fit autism because he's way more affectionate than any kid he's seen with autism, but that might be because kids with Down syndrome tend to be so social and affectionate, but the stimming, language delays, and inability to interact socially with peers all fit. So clinically, Kyle couldn't have demonstrated his strengths and weaknesses any better. After much discussion, we will be starting Kyle on a low dose of Abilify, one of a class of drugs which sometimes helps reduce stimming and improve language and social ability in kids with autism. He needs blood work within two weeks of starting the med, so we're waiting to start it until next week, which is two weeks before his normal bloodwork.

Starting a med like this is cause for both hope and fear. So if you're inclined to pray, asking that this med will help and not hurt Kyle would be a great petition if you don't mind.

Otherwise, life is zooming along. Brandon and Ryan are working hard at school, and Kyle is still adjusting, but doing okay. God is with us. We hope you are doing okay or even better, too. Thanks for caring.

Saturday, August 4, 2007 11:35 AM CDT

Goodness, what a week! I was able to get Kyle into the developmental pediatrician on Tuesday, which is incredibly fast. I had emailed the doctor about our concerns re. his anxiety, stimming, language loss, etc. To make a long story short, Kyle has been diagnosed with autism.

This seems to surprise a lot of people who have learned of it thus far, but it is no surprise to Brad and I. Kyle's symptoms of this spectrum disorder has just ballooned in the last month or so, but shadows of it have been there all along. When we read or see info on autism, it is with recognition. Kyle's feeding issues, teeth grinding, humming, flapping, rocking, insistence on routine, fixation on objects, and language and developmental delays beyond what is expected with Down syndrome, all make sense with this diagnosis. In a way, it's a relief to have a reason for it and, though I hate labels, it will likely get him more services. For instance, I've learned that insurance companies and schools can't deny services to an individual with autism. So boom; my insurance fights just got easier.

If you know Kyle and know just a bit about autism, you might be thinking this doesn't add up. Kyle is warm, makes eye contact, and hugs freely. But autism is a spectrum, and kids with DS and autism often have fewer social interaction issues. In addition, Kyle does have lots of trouble socially interacting with kids and can't manage interactive play yet.

Kyle's developmental pediatrician thinks the rigors of treatment may have brought this on or at least made it worse. He also thinks it might improve as we get 2-3 years post treatment. I'm not sure about that; but it's not a real important note in terms of what to do now. Right now, we're making decisions about whether or not to put Kyle on meds to help with his anxiety and other issues, which is increasing. Both his developmental ped and his oncologist think this is worth a try. We are in conversation now about what, how much, and when to try this. I have a call in to a pediatric psychiatry clinic for a second opinion on the meds.

The day he was diagnosed, two things happened. We ate at China Buffet and my fortune cookie said, "If it seems like the fates are against you today, they probably are." That made me laugh out loud. I thought to myself, it's a good thing I believe in God and not fates. Two days later, I found out that the very day Kyle was diagnosed, he received final approval for a Medicaid waiver. We had been worrying about the added medication and dr. appt. expenses, whether insurance would cover a second opinion, etc. Now boom, here comes Medicaid, which will cover all that. What a nice coincidence, huh? Except I don't believe in coincidences, either. God is so good. So awesome.

We are blessed. Kyle is alive. And he's still Kyle, no matter what labels he carries. As we walked to the van after the diagnosis, I noted how calm and accepting I felt. I came up to our van and saw the childhood cancer and Down syndrome awareness magnets on it. I said, "Kyle, we're going to have to get ourselves another magnet." There's a very cool rainbow puzzle autism awareness car magnet. We'll have a very pretty van back door.

Kyle's counts this week were great; he's very healthy. Now we start a new journey, but compared to leukemia, autism just seems pretty minor. We have our son. We'll deal. And rest in the knowledge that we live always in the hands and love of Christ.

Sunday, July 22, 2007 7:19 AM CDT

Goodness, we're behind! I guess that is a good sign that things are going along smoothly. Kyle's surgery scar looks great; better than ever. The surgeon cleaned up scar tissue from previous port surgeries as well as removing the port, and it looks better then ever. Thank you! His gtube stoma is red and swollen as of last night but not really looking like cellulitis yet, so we pray it's ok for a little jaunt away.

Kyle did Bible School this week while I volunteered. He enjoyed it but was a little anxious and would not enter rooms with lots of people and noise. He's also doing a lot of stimming (humming, flapping arms, teeth grinding, etc.) when he's anxious. He's not using as much language, either, after a few months where it was really blossoming. I'll give this a bit more time to see if it's just a phase or settling in; these are signs of autism spectrum, which is more common in kids with DS, and he's at the right age for late onset. But it also could just be him trying to cope with new emotions and situations. I'm trying to let time and reason be my guide on this one. It's not like leukemia, where you have to rush in and treat it. Plus since I run the special needs ministry, I see a lot of autism, and I could be reading much more into it than there is. He is still happy, huggy and has the most infectious belly laugh. Whatever happens, he's a joy.

We are awaiting Medicaid approval for a waiver (medically fragile/aged and disabled waiver). He's approved but needs the Medicaid approval, which is painfully slow. Pray we get this. It will help with still onerous medical and supply costs and provide a little respite for us to do things with our bigger guys (like hiking, movies, etc.) that Kyle can't do yet.

We are busy but doing well, and thankful for each day of wellness. Praying you are well too. Pray for Ashley and Jillian and all the kids still fighting leukemia.

Wednesday, July 11, 2007 1:50 PM CDT

Hello, and sorry it's been almost 2 weeks since updating! Kyle is doing well. I sat watching fireworks downtown from atop a parking garage with family and friends, and Kyle loved it. The fireworks were so far away, it wasn't scary, and the radio was playing music that went along with the fireworks show. He loved it and was bouncing up and down and clapping. I was filled with such a sense of gratitude that he is here and cancer-free and enjoying life with us. I was also grateful to live in a country where kids with Down syndrome can live with their families, have full access to medical care, the right to a public education, and the freedom to explore the opportunities they have. I pray that more opportunities become available for kids and adults with disabilities, who have so much to give, and that my special needs ministry can be a tiny part of that. Anyway, I am thankful to live in a nation where such dreams are possible.

Summer is rushing along. Ryan is at camp this week; pray for a wonderful, God-filled time and safe return. He is in computer camp, which seems a contradiction in terms, but they do a little camp stuff (swim, hike, etc) plus fun child geek stuff like web design and dismantling a computer. Plus it's church camp, so they also do Bible study and worship. My birthday was yesterday, and would someone please tell me how I got to be 43 years old? I honestly cannot figure this out! Business is getting busy right now, which is great after a slow time, but I'd like a little more time to play with my kiddos. At least I can perhaps pay for their food and shelter, at least! Brad is busy too trying to do an extra job this summer before school starts again all too soon. Brandon is busy being 14 but also a big help to us.

Kyle is feeling pretty well despite some continuing fatigue and GI problems. But nothing terrible, and we thank God for each day. He is getting to be a chatterbox but the trick now is turning his vocabulary into meaningful conversation, and we're quite a ways from that. Also potty-training in the midst of the GI problems is a dubious prospect, but I hope to try it anyway if possible. It's nice to be able to focus on these goals instead of just mere survival, and to venture a tiny bit astray from one day at a time (but just a bit!).

Blessings to you.

Friday, June 29, 2007 2:31 PM CDT

We are home from a successful port removal surgery! Thanks to those of you who prayed and sent good thoughts. The folks at Clarian/Riley North were great. Kyle did well with the surgery, which started early and went quickly. He slept a long time after, and he had some issues afterward with not wanting to eat and then throwing up after he finally ate something and had some pain meds. That created more delay with some zofran for nausea til he could hold down some juice (tube fed because he's refusing to drink) and the tylenol with codeine. After all that we got home. Surgery, 20 minutes. Recovery, 3 hours. But he had no trouble breathing, which is great. He just had a small tube to keep his throat clear rather than a full intubation tube, and I'm sure that helped with the airway issues, as well as he's bigger and healthier now!

His counts look great; normal even. His fatigue is just leftover from chemo and the result of being more active in the day, they think. He has not gained any more weight, despite hearty eating as of late. I voiced concerns about his frequent stools and lack of weight gain despite greatly increased calories, and the nurse practitioner for the oncology clinic agreed that we should give it a more time but if he's still having these issues 6 months off treatment, we ought to look into it. We both suspect he may have a malabsorption disorder. But we'll give him a few more months to settle into OT before we pursue that.

Now, without a port, we have no need to run screaming to the ER with fever over 101.5. We were still cautioned that his immune system is not the best and that if he has a fever and looks awful it still warrants a call, but we can live with that.

So now we let him recover, nurse him with tylenol and codeine if he needs it, try to get him to drink, and await the return of our other two boys tonight and tomorrow night. Sunday morning should dawn sweet, with everyone home, and a new chapter of life to live ahead of us. We are so thankful. And we ask you to pray for Jillian, Ashley, Thomas, all kids fighting leukemia, and Russell, an adult friend of a friend fighting a massive heart attack and complications. Thank you. I'll continue to update on Kyle's exploits about once a week if possible. His next checkup is July 31. Bless you!

Wednesday, June 27, 2007 8:35 PM CDT

Ah, Wednesday. We come on the heels of a great anniversary trip to Niagra - just the two of us for the first time in 5 years. That was our 20th. It was just beautiful. And now here we are in a week that I uncharacteristically wished on Monday that it would just get over quick. Brandon's away on his mission trip til Sat., it's the last week of my job in its current form, and Kyle's surgery is Friday. Ryan will be at a friend's during that. I pray that I go to bed on Saturday night with all my family home, well and safe, and I will have much to be thankful for at church on Sunday.

Kyle is doing well despite fatigue at night. He is occasionally popping out with complete sentences of several words. It's a gas and terrific. Who knows what's in that cute head of his, and it's a joy figuring it out. His last day of extended school year school is tomorrow, Thurs. He really loves going and loves his beloved teacher (who we will all miss and promise to not leave her alone for years to come). I think he will miss school and be bored, so we'll have to keep him busy. At least I'll be back to freelancing and will work for VSA from home, and Brad will be home quite a bit, so we should have more time to entertain him. Actually, the great potty training attempt is my evil plot for July - something that requires many days of undivided attention.

This grand plan all depends on a good blood count and successful port removal surgery Friday. Pray for Kyle, please, that all goes well with surgery and that he is well and home by Friday afternoon. Pray for peace and trust for Brad and I; Kyle's surgeries will forever be an anxiety producer, despite our faith, which is a huge help. Why wine isn't served in surgery waiting rooms is really beyond me.

I will update or at least add to the top of this update after we get back from surgery. Please also pray for Jillian, another cutie with DS and leukemia who is recovering from a nasty scare and still feeling bad. Pray for all the kiddos facing relapse, too; I know many and it's a hard road to travel. Thanks!

Friday, June 15, 2007 9:40 PM CDT

Breaking news: my special needs ministry got a city-county council award, and it and Kyle were in the news. To read it, go to: http://www.indystar.com/apps/pbcs.dll/article?AID=/20070616/LOCAL/706160355/1195/LOCAL18

Friday:
Oh, my, the update is late. It's been a stressful week; nothing to do with dear Kyle, gladly. Working two jobs had left me with not enough time for Mom duties, so I resigned from my most recent position as PR director of VSA arts of Indiana. Great organization, but only one me, and freelancing is my professional calling, I believe, not to mention better paying. I may still continue to do some work for VSAI but at a much reduced schedule, leaving me time for those silly Mommy things like potty training and pushing a swing, not to mention many other things. Trusting that God will take care of our financial well being. He does a much better job than us with things, anyway.

Kyle is happy at school, and doing well. Eating very well! He was really fatigued tonight and wanted to go to bed, and was a bit pale. So Brad said that he hopes Kyle's all right, and I knew instantly what he meant. I'm not sure we'll ever get past wondering about relapse whenever he's tired, pale, sick, bruised, etc. A special little brand of paranoia that cancer parents share.

I just uploaded Relay for Life photos, reminding me of what a nice off treatment celebration we had. Pray hard for Ashley Debes, batting a second relapse. Kyle's next checkup coincides with his port removal surgery, now scheduled for June 29. Thanks for sticking with us. I'll update perhaps not next week since it's already Friday now, but certainly by the week of the 25th. Enjoy life and the blessings of every day together.

Thursday, June 7, 2007 4:30 PM CDT

We are about to open our home to 10-15 teenagers for Brandon's co-ed 14th birthday party. I'll be sure to let you know if we survive.

Kyle will be happy to terrorize them, I'm sure. He's doing well. He had his first week of summer school and is learning lots. Since he has the same teacher and bus driver, it's an easy transition. He is really tired. I think he got used to sleeping in and now he's beat. But he is eating like a champ and talking up a storm.

Friday's off-treatment party and relay for life was wonderful. Kyle's Grandma Sandy pushed him in the survivor lap - she is a breast cancer survivor. That was neat. His therapists from St. Vs all came, as did lots of church friends and other close friends and family. Kyle had a big group at the relay, where he was the youngest survivor, and lots of people stopping in at the house. He really enjoyed seeing cards. It was a nice, low-key evening and a wonderful way to say GO KYLE and GOOD RIDDANCE to cancer. Praying the beast stays away, because we've had the going away party and have no desire to see its ugly face again.

I am working more than not this week and hope to get some summer fun one of these days. The kids are great, and the pool is up. Kyle will have none of it, but we have a new little water playland thing for him that isn't at all deep, so we'll blow that up soon and let him try it out. I have a new swimsuit for him from Australia that covers up his button and gives sun UV protection. I'm sure Kyle will look much cuter in his swimsuit than his parents will look in theirs!!

With that vivid mental picture, I sign off. Sorry for ruining your appetite, but I'm glad to share mostly good news about our Kyle. Prayers for Ashley, please. And for my friend Jaime's family who recently lost their mom. Thanks!

Wednesday, May 30, 2007 10:19 PM CDT

It's Kyle's big week! Friday evening he's "walking" (strolling) the survivor lap in the local Relay for Life, and we're having his off treatment party, too! I'm frazzled so if I haven't gotten the word out to you and you're free Friday evening, email me for details and come! A lot of parents have huge parties with carnival like atmospheres for their kids, and that's great, but Kyle isn't comfortable with a lot of commotion, so this will just be food, cake, balloons and just JOY. What a big milestone for my little guy.

We're all busy prepping the house and me trying to work while kids are home on summer break and Brad's still got this week of school left. Our new roof will be done and everything cleared out by tomorrow afternoon, I'm told; we spent the day trapped in a very noisy house. But it's looking very nice. A roof is the most expensive thing you buy for a house that you never get to really look at unless you're standing across the street. But we should stay dry; a definite plus.

Kyle's health is good. He has very odd and obvious rashes going on, but still no other symptoms, so it's okay. He's eating well and having a good week off. Summer school starts next week, every morning through June. I hate to send him away, but it will be very good for him, and he loves school and thrives on routine, so he'll be in good shape, I think.

We're shooting for his port removal near the end of June; still trying to schedule it.

That's all our news worth reading, and perhaps more than you needed! If you are so inclined, join us in praise and thanksgiving for Kyle's having come this far! And please pray for Ashley Debes, as she battles a second relapse. She and her brother both have childhood leukemia; pray for the whole family. Thanks!

Monday, May 21, 2007 10:23 PM CDT

Updating late Monday expecting a busy Tuesday! Kyle is doing well! Late last week the school nurse was sure he had pinkeye, and much like the chicken pox scare of the previous week, it was a false alarm. I'm sure she had all the best intentions. But my virus-y little guy just had a little eye irritation like you get with a cold, and several phone calls and unnecessary eye ointment purchases later, he comes home with no discharge and wakes up with eyes as white as snow. I found it rather humorous that just when we're easing up on the actual medical drama we get these faux dramas. Wouldn't want to get bored, now, would we?

Actually, we're kind of a fan of boring. Boring means good health, usually. And Kyle is doing pretty well. A little tubie breakage with his feeding tube was fixed up with a new one, and a worsening rash just seems to be a minor annoyance. We'll take it. He is fond of telling our dog to "quit it." He still gets tired. I'm sure he will miss school when it's over later this week, and we'll all miss his teacher! But half-day extended school year runs through June and he'll be back with his teacher then. It should be good for him. He's starting to get so much more verbal and learn so much more. It's like watching a flower bloom in one of those super slo mo nature shows. Most kids breeze through development so fast you miss a lot of it. Kyle shows each step and the exquisite nature of human development. Like God's slide show.

Kyle will be participating in the local Relay for Life, organized by his teacher, and we're making that part of his off treatment party! What a blessing. Pray for all the many kids still fighting cancer. Have a good week!

Tuesday, May 15, 2007 2:36 PM CDT

The car sucks but the kid is great, so we'll take the deal. So this afternoon I find out that Kyle's counts are great and his health is good. I also learn that our van's health is in far worse shape, and since they don't have health insurance for vehicles, we'll be paying out about $1,700 on the green machine this month. Or rather, our credit card will. Debt - the American way. It's nice to have Kyle around to point out the relative trivial nature of things like cars and debt. His color is good, he's gained a pound this month (!), and his counts are beautiful - white count back down to normal, and hemoglobin and platelets still normal, and ANC kick-butt high and ready to fight infection. Praises!

So, we're ready to party. June 1 is Kyle's OT party! And probably in mid to late June, he'll have his port out. This is surgery, but minor day surgery, so it should be fine. Since Kyle's near-death anesthesia experience I tend to get a bit wound up about surgeries, though, so prayers will still be appreciated.

The past week brought a chicken pox scare at school that turned out to be a contagious rash of some sort. Kyle got the rash but has felt fine, so we can just not worry about it, I'm told today. Done. He has a nasty cough, and Brandon has an even nastier one, but it's all upper respiratory stuff and nothing to worry about, either. Check. So we're left to worry about things like car repairs - and given the worries we've had in the last few years, that's pretty doable, too.

I celebrated mother's day with my husband and three wonderful boys around my table. The Lord has set a feast for me indeed, and I say grateful thanks for it. Blessings to you!

Tuesday, May 8, 2007 10:51 PM CDT

Kyle had the world's longest case conference today. No, just kidding, though it was more than 2 hours! For those of you who don't have a child in special education, a case conference is when you and school reps sit down and plan your child's IEP (individualized education plan) and, in this case, his placement for the following year. It went well, and Kyle will return to his home school next year. He will miss the school he is at now, especially his teacher and his assistant principal, but it makes sense for him to go "home" for the rest of elementary school. And this school has the life skills class, the special ed resource class I do believe he'll need (and with the teacher and room I did my spy mission on and whom I believe is best for Kyle next year). Despite the school people's and my mutual belief that Kyle needs this special ed room, we fortunately also have mutual belief that he needs a general education classroom placement, too; and that has all been worked out; on paper, anyway. It will be a gradual process next year and one I'll remain vigilant about. His classification is changing to Other Health Impaired, since his health issues have affected his learning more than his intellectual disability. He also was approved for Extended School Year, so he'll have morning class through June, with his same wonderful teacher, thankfully. He'll get PT, OT, speech, and consultation with the OHI/assitive technology specialist throughout next year. He also is approved for an adult teacher or aid to go with him into all general ed settings, including lunch, special classes and regular class. This is a very individualized plan for our guy, and thanks for this are numerous. One, to a great developmental kindergarten teacher. Two, to a school system that is willing to work with us. Three, a little credit to me, I guess, for the many hours I prepped for this. Four, to next year's teachers willing to work on this before they have fallen in love with Kyle. (His current school reps fell a long time ago.) Finally and most importantly to God.

I approached this conference full of 10 school professionals plus me with no more apprehension or butterflies than a trip to the grocery. Cancer has been thoroughly awful but has taught some handy lessons - like your kiddos' school issues pale in comparison to his survival issues. Plus, after having to chat with medical professionals about life and death issues, stand up for my guy's health care rights and even fire a surgeon, a room full of educators seems a pretty benign crowd.

Kyle alternates from being full of energy and very funny (yesterday, for example) to being very tired (today, for example). We take each day as it comes (still using that!) and are thankful for it. He goes to clinic for counts and a checkup next Tuesday, so I'll have news about that then. Thank you for your continued support!

Wednesday, May 2, 2007 4:20 PM CDT

Kyle visited my office today on a field trip, and it was fun to be there with him. He is feeling pretty good, though tiring still, and seems to be okay. His off and on illnesses have been more off than on, so he seems to be able to fight off viruses, etc. He is now stating what he wants in full sentences in word and sign: I want ____. Usually it's I want Veggie Tales. His case conference for next year's school placement is May 8. I am thoroughly prepared. Pray for all the right decisions to be made that day. Conferences like this can create all sorts of anxiety for parents, but I have found Kyle's cancer battle has made me both more bold and less uptight about it. If we can face down cancer, it's hard to get too tightly wadded up about school conferences. And Kyle has the best kindergarten teacher in Indiana in his corner!

The special needs fair was great Sat. About 250 people came to see 25 state and regional agencies plus have fun at a little carnival. God knew what he was doing, giving us a child with a developmental disability. It ushered us into a world and people we find precious and just plain fun. If you're stressed out, go to an event for people with disabilities. I would bet money you'll find yourself leaving in a most unexpected way -- smiling.

Brad's science team did pretty well and the interdisciplinary team won the state in academic super bowl last weekend. Brandon and Ryan both perform in a local school district arts festival this weekend - Brandon in band, Ryan in a play - and we are having family over for that and to celebrate an early birthday for Brandon, who turns 14 (!) in a couple of weeks.

So life is busy, normal, and good. Praying yours is the same. Thanks for checking in!

Wednesday, April 25, 2007 12:09 AM CDT

Hello. I have run into several people this week who have told me they read Kyle's site - so hi to you, and thank you all for checking in.

Kyle news is pretty good, though he seems to be continually fighting an illness. He was covered in snot Friday and Saturday, the croupy cough comes and goes each night, and he vomited in school Monday. Despite these issues, he plugs along and seems pretty content. Brandon observed that Kyle handles being sick really well. I guess it's because he doesn't really remember feeling good, so this off chemo time is pretty darn good to him even if he has some congestion, colds and nausea. Most of us would be working up a major whine about it. Or at least drinking some significant amounts of wine....

In the leukemia world, this has been a rotten week, although no awful news from Kyle, thankfully. Tuesday we went to a visitation for a boy from Plainfield who died after 7 long years of battling leukemia. He's Kaden Cassidy, and he was 10, and if you would like to leave a message or prayer for his family, you can at www.caringbridge.org/in/kaden. We weren't able to stay long enough to speak to his family (lots of people there and we had to pick up Brandon), but seeing his photos and slide show and casket was pretty wrenching. He was diagnosed when he was 3, just like Kyle, and went off treatment and then relapsed. Horrors. Last Saturday at Ryan's Math Pentathlon, a team was playing in memory of a young teammate who died this year from leukemia. It's just a reminder that though 80 percent of kids survive this disease, there is a horrifying 20 percent that do not. Research and work is still very needed.

Yet here, our little boy is full of smiles, and I just ordered his new school picture. When it comes in, I'll put it up, and you'll see he has gotten taller and his hair is getting thicker! We approach each day as its own and thank God for it. Thanks for checking in!

Wednesday, April 18, 2007 11:20 AM CDT

Weekend update: Gosh that sounds like Saturday Night Live! Sorry, not nearly so amusing. But not bad. Kyle's been looking great. His counts were almost perfect, though his white count jumped a bunch to 10,500. However, since the other counts are good and hemoglobin is up to 12.7, no real concern, except in the late hours of the night on the day your other son's math pentathlon was dedicated to the memory of a young participant who recently died of leukemia. That's what I heard this morning. Sigh. I hate this disease. So much for the shiny happy attitude of last week. But we're so thankful that there's no rational reason to worry - and that I have to keep cutting Kyle's hair because it's growing in and thick so fast now! Also, he grew a half inch; no weight gain. Thanks for checking; on to this week's previous update:

Hello! Well, not much news, but a new reason for it! Kyle's kindergarten class was having Kite Day on Tuesday, a fun time for the class, on the same morning of his cancer clinic appointment. This is his first appointment since he went off treatment, and I realized that hey, I can move that. It used to be important that he get certain chemo exactly 4 weeks apart, but now he's not getting chemo; just a blood draw and physical. The clinic was so nice about it and he's going Friday morning instead of Tuesday, so I'll add something about his counts later Friday.

This is really just swell. Moving appointments around school Kite Day is just - well, just so NORMAL! And I realized that I, Mommy, am fine with waiting; have no real anxiety about the appointment, and am indeed taking off treatment one day at a time just like regular treatment. Woohoo. Joy. I know Kyle could relapse, but I also know things could be just fine, and why ruin all the just fine days dreading the possible awful thing? So on we go. As for Kyle, he is getting taller and his hair is getting thicker. His food intake is good, so now we can work on his strength and ability to chew and swallow harder and crunchier food in therapy. (He had therapies today.) He has color - his cheeks are kind of rosy. He's more verbal and he's funny. He still is tiring out easily, but we can really see the progress he's making without all those meds in his system.

Brandon got third in his division in a state gymnastics meet (though it wasn't large, it was fun), and Ryan is competing in Math Pentathlon this Saturday. So go the athlete and the mathlete. I'm running special needs family information and resource fair at my church Apr. 28, and it's a busy time preparing for it. We will have about 30 local and state service providers there, plus a carnival and lunch. Big event, all originally inspired by God via a little boy named Kyle. Brad's science super bowl is coming up, too.

Thanks for checking in. So glad to have good news. I'll post the Friday clinic news up top when we have it.

Tuesday, April 10, 2007 3:08 PM CDT

Happy Tuesday! Kyle has been recovering from his illness of last week. We are fairly certain he got strep from his bro Ryan. He still has a cough and some clear drainage, but nothing awful, and he seems to be getting better. Still tiring through the day. His fever went away after 24 hours on the antibiotic.

Ryan is not faring so well. His strep is back today, confirmed by another trip to the doc. The first round just didn't cut it. So he's on augmentin now but so far can't keep it down. I'm off soon for yummy flavoring in hopes that will help. The doc wants to see him again in 2 weeks, and if he's still strep positive, he'll be off to the ENT. The doc also mentioned he'd get a shot of antibiotic and possibly need a tonsillectomy, which I thought was working way too far ahead of ourselves and should not have been mentioned in front of Ryan. Required much mommy damage control afterwards. Clearly, this doc is unfamiliar with our one day at a time strategy.

I have come to observe that people are much less likely to run around worrying that the sky is falling when they have in fact actually had their sky fall. There's plenty of drama lurking around in life; no need to create any unnecessarily, in my opinion.

So we are treating strep again here. We somehow managed to have a healthy, normal Easter, and that was a blessing. That Kyle is still on amoxicillin is also a blessing; hopefully Ryan can beat this before Kyle gets done with his antibiotic. Kyle will have his next clinic visit next Tuesday, which will involve his first "well" check with just a blood draw for a CBC and a physical. It will be interesting to see what a month off chemo will have done to his counts.

Pray for full recovery for Ryan and wellness for the rest of us. We pray you are well and counting blessings, too.

Monday, April 2, 2007 11:34 PM CDT

Wed. update: Kyle woke up hacking and with even a little trouble breathing, though more of the junky variety than true airway distress. He had a low grade fever that has persisted today, and he's not in awful shape but obviously not feeling well. I called and the NP said to go ahead and fill the amoxicillin scrip, which we had from the ped since Ryan was diagnosed with strep last week. It's purpose is to treat any possible infection, including strep. It's amazing how quickly and readily they put kids with cancer or just off treatment on antibiotics, as infection can be such a potential danger. We hope it's either a small and quickly treated infection or a virus that behaves itself. It's also freezing and snowing here, so we've moved from a sunny, warm spring day in the park to a wintery day home sick, all in three days! Tuesday's update is below. Blessings and happy Easter!

Tuesday: We are wrapping up the end of a lovely day of spring break. Beautiful weather here in tropical Indiana, and Kyle enjoyed swinging in the park and french fries and ice cream at Steak and Shake. Tomorrow should bring thunderstorms and Wed. subfreezing temps. Welcome to Indiana. Kyle is getting a bit congested with an occasional cough, but no fever so far and no sign of strep, thankfully. The family seems to have dodged the strep bullet that Ryan was hit with, and fortunately, he is feeling much better and still enjoying the yummy pink medicine.

I am up too late, and you probably have no need to read me droning on and on, so I'll leave the update at this for now. It is holy week. As we celebrate new life in Christ, we'll have even more to celebrate this Easter. Kyle is alive and currently cancer-free. Praise God. If you have a child who is alive and cancer-free, how wonderful! I hope you praise God, too. And remember in your prayers those who are not so fortunate. Happy Easter!

Tuesday, March 27, 2007 10:14 PM CDT

Hi! Believe it or not, Kyle is not presenting the main medical news in the family this week! Ryan has strep throat and will miss his third day of school this week. We just got the diagnosis and antibiotics today, so we all hope he's feeling fine by Thurs. He feels awful right now. My poor boys will never get a mom who freaks out and obsesses over a child ill like this. Strep should take 24-48 hours to cure with some yummy pink medicine; cancer took 3 1/2 years to cure with a nightmare. Nevertheless, I feel so bad for Ryan that he's so miserable and pray he gets better soon.

Of course, Kyle is always part of an illness mix. As long as he still has a port he still gets admitted to the hospital for a high fever, so we are keeping a close watch on him and will pop him on antibiotics at the first sign of strep.

Otherwise, Kyle is doing pretty well, full of smiles and hugs. He still tires easily but is doing okay. He can sing the Dora theme song and is starting with more sentences. He says "You're so funny" now. The new dog Maddie is working out really well, but she loves Kyle too much and sometimes accidentally knocks him over or licks him, which he hates. It's kind of a one-sided love relationship as of now, but as Kyle gets bigger and Maddie gets older, we think they'll be best buds.

Brad got rear-ended today on the way to work but is fine, thankfully. And that is the rear end, I mean the end, of our news this week. Let's hope that's as much adventure as we get. Blessings!

Tuesday, March 20, 2007 2:21 PM CDT

Wednesday update: I am keeping the Tues. journal in since it has most of the news. But update: Kyle's heart tests and thyroid tests were all NORMAL! Kyle so rarely gets "normal" reports; watch out for an earthquake or an eclipse or something. But we are praising God and happy, happy. On a lesser note, I'm also happy because I figured out an easy way to resize pictures, and ALL of the pictures on this site are new except the slide show on the home page, which is Brad's job. Check them out. Thanks much and read on.

Tuesday's report:
Kyle is sleeping after a day at clinic and outpatient areas for an echocardiogram, EKG, and IVIG infusion. We had fun visiting with Jade and Jonah, friends we first met online and enjoy very much, as Jonah was getting a long cytoxan infusion. Kyle's heart tests went fine, though Kyle wasn't a big fan of the sticky stuff and the cold gel, but he did really well overall. The tests are sent to a Riley cardiologist for analysis and the results then sent to Kyle's oncologist, so I don't know any results yet. I'll add something to the top of this if I find out yet this week. I'm curious since he had a small hole (PDA) in his heart as a baby that closed, if he would be any more likely to develop heart issues from chemotherapy than anyone else. One result we DO have is that the cytogenetics results on his bone marrow came back negative for leukemia. This is the last test on that, so he is officially cancer free right now!! Praise God.

This was Kyle's last IVIG and thus his last long clinic day if all goes well. We will see how he does clinically - whether he gets sick a lot again - and if so re-evaluate that. I am not horribly worried about significant issues with illness until next fall and winter, his worst times for illness, but I'm hopeful he'll be stronger and better able to resist illness then. IVIG has been so helpful in keeping him well. At $4,000 a month, it should be. (Thank heaven for insurance, no matter how many headaches it gives us.)

He's had moments of energy and humor and moments of significant fatigue. Two weeks off chemo does not make a new child, and we didn't expect that. It will take quite a while for his marrow to recover, and he'll have his ups and downs. But still, those flashes of personality are wonderful. Last Friday he was flirting like crazy with a receptionist while waiting for Brandon at the dr. office (just a physical), and he was just laughing his head off. I haven't heard him laugh like that ever. What a joy.

So now it starts. Once a month visits for a physical and CBC. There is only one reason for this: to watch for relapse. I am determined to focus on life rather than relapse and continue to take things a day at a time. Of course, I've also been determined to lose 10 pounds for quite a while now, too. Kyle is blessedly unaware of his risks and thoroughly unimpressed that he's done with treatment. He has gained another 1/3 pound in two weeks and downed almost an entire grilled cheese sandwich for lunch while we were there, which I bought for him not at all sure that he'd eat it. That was the most exciting thing of the day! (That, and knowing we DO NOT have to start prednisone tonight for the first time after a monthly clinic visit in ages.)

I'm prepping for a special needs parent meeting tonight at our church, and a huge special needs fair April 28. I spend at least half my work hours now as PR director for VSA arts of Indiana, serving people with disabilities. I communicate every day with people whose children have Down syndrome or leukemia or both. Kyle is going off treatment and about to slowly discover the boy he really is. Because of him, his mother has morphed into something different than before, too. I have a son with Down syndrome and leukemia - and I thank God from the depths of my soul for this child and the perspective he has brought. We wish you nothing but health and happiness, but still, we hope that somehow you can be so richly blessed. It is worth it, without a doubt.

Monday, March 12, 2007 10:06 PM CDT

It's a wonderful day. Kyle's cytology report showed his bone marrow is negative for leukemia. We still await the genetic report in a couple of weeks, but this is very good news. We expected it, but still, it's sweet to hear.

Kyle's Friday of last week was his Off Treatment Day - with capitals. His bone marrow aspiration was painful and traumatic for him even with versed and morphine, but I saw sweet red marrow instead of the nasty looking marrow at diagnosis, when his marrow was 95 percent leukemia blasts. That first BMA result was considered very, very bad. My little guy has come so very far. Thanks be to God, who has been with him and us through all this, and will stay with him for all to come. He got a present and a medal and cheers from his wonderful cancer care team, though to him I think it was just an extra bad clinic day. Kyle doesn't really understand that he has cancer or that he is off treatment now. He just takes each day as it comes. His mom had to live almost 40 years before she learned that little trick, but he knows it instinctively. In fact, he taught it to me.

Friday night, we celebrated this new lease on life by adding new life to our family - a new dog. We still miss our beloved Shades, but Maddie adds much life to our house. She's a chocolate lab who just turned one. She came from a lovely family who just couldn't handle her size and energy in their situation. She's an 85-pound puppy. She is smart and very trainable and very eager to please. She's beautiful as well! We're so glad to have her. One of these days soon I will actually update photos here, and I'll add one of her. I'll post the news here when I actually get around to this.

Next up is another big day next week - his last IVIG transfusion plus and echocardiogram and EEG to test his heart. Some of the chemo he got can cause heart problems now or later in life, so this serves as a test as well as a baseline. We spent some time Friday discussing late effects, which include the possibilities of heart issues, another type of blood cancer, and cognitive delays, among other. The most likely late effect of Kyle's treatment would be cognitive delays. We will never know how much this affected him, however, due to his existing delays as relates to Down syndrome. A part of me will always wonder what he would have been capable of without cancer, but the bottom line is that it doesn't really matter. He is here, and I firmly believe that life isn't about what we do - it's about who we are. Kyle is already a source of great pride for us, and he always will be.

After the big day next week, we're back to monthly clinic visits, but only for a checkup and blood counts - not chemo. Sometime soon he'll have surgery to remove his port, which we won't look forward to but which, on the other hand, would remove the need to run to the hospital every time he gets a fever over 101.5 (due to the risk of blood infection with a port). As for the risk of relapse, it's there, but we will try not to obsess. We're told that kids who present with a very high white count at diagnosis as Kyle did tend to relapse with a very high white count, so the blood counts should keep us informed. I guess I will never again treat a CBC with the same casual aplomb I once gave it.

Thank you so much for following Kyle during these difficult and yet blessings-filled years. I will continue to keep this updated with his various forms of medical news as we get regular blood counts, monitor his growth and try to get him off his gtube eventually (he gained a pound this past month!), watch his immune responses carefully, and address his various medical and developmental needs. If you ever have some spare charitable money, you might consider giving to caringbridge. Their journaling service for families facing medical issues is a real blessing for those families and all those like you who care about them.

Have a happy day. It can't be as happy as ours, I wouldn't think. I wish this kind of happiness to every family now fighting childhood cancer. There are just way too many of us.

Tuesday, March 6, 2007 11:00 AM CST

Hello there. One day at a time has brought us to this week, and wow, it's the week Kyle goes OFF TREATMENT!!! On Friday, he will have a bone marrow aspiration (yuck) under sedation, we meet with the cancer folks for a view of life OT, and we are done. Kyle gets his last methotrexate tonight and his last 6MP Thursday night. He was diagnosed with leukemia Oct. 29, 2003, and has been on chemo ever since. I am very sure he has absolutely no memory of what it feels like to be without it. My deepest hope, beyond that he remains cancer-free, is that he feels better and has more energy and comes into himself and life the way he was meant to. That will take time, I know. And still a day at a time.

Kyle is still tired but nothing like the fatigue of my last entry. He's functioning, but pretty quiet, and still tired a lot. I think the treatment is just wearing on him. Hang in, sweet boy. You're almost there.

What is life like off treatment? Well, practically, not much different. He still will have appointments at the cancer clinic once a month for bloodwork and a physical. He still has three therapies a week - PT, OT, Speech/feeding. He still is tube fed at night and on Prevacid, and he'll still be on septra on the weekends to help prevent a nasty pneumonia. So for us, not a lot different; just fewer meds to administer. The big difference, we hope, will be for him in the way he feels, though that won't be instant. His immune system and bone marrow will take time to recover from the deluge of meds, and who knows if all that will recover fully or not. For this first year off treatment, he enters his highest risk of relapse since the first month of treatment, as well. Don't want to be a downer, though. This is another step on the journey, and a big step indeed.

I have seen my boy and his cancer compatriots battle a war that is both ugly and hard with unbelievable grace, courage and spirit. He has done so with the help of several medical professionals who have gone far beyond the call of duty, and we are forever grateful to them. We have come this far with the grace of God and our lord and savior Jesus Christ, and we would be balls of quivering jello without Him. And we have done it with inspiration from this little boy who gets up and smiles and gives boundless love no matter what he is going through. Congratulations, Kyle. You're our hero.

Tuesday, February 27, 2007 11:01 PM CST

Just a weekly hey there. Actually, the Kyle news of the moment is that he is extremely fatigued. His day: fall asleep with bright lights on at bedtime Monday night before we said goodnight. Resist arousal Tues. AM. Stay home. Get up and go to therapy. Show a lot of fatigue. Little energy to eat at feeding therapy. Try school; make it a half day. Occasionally lean on furniture or put head in arms due to fatigue. Ride along to take Brandon to gymnastics and run errands - fall asleep in car and nap for almost 90 minutes til awakened. Stay up but watch TV and eat decently, then volunteer to go to bed again. Look wiped out; big dark bags under eyes.

So, okay, fatigue is one of those things that make cancer parents mildly freak. It's also one of those things that just happen sometimes on chemo. So we wait and pray he perks up.

Other news is we're in the preplanning phase for Kyle's first grade placement , and I am as always collecting information like the journalist I was trained to be. It's hard to know what will win out with Kyle. Will his development pick up and will he blossom after he's off chemo a while? Or will late effects of cancer treatment create more cognitive delays? Either scenario, or even both, or neither, is possible. There's a really valid prayer focus.

So, in all regards, we stick with one day or moment at a time. Such a safe little philosophy that has gotten us so far. I highly recommend it. It's all we're really guaranteed, anyway. And if you put your faith in God where it belongs, you'll find that stark reality doesn't really bother you all that much. It's even kind of freeing. Or perhaps these years of chemo administration is getting to my brain as well...

Have a great week.

Tuesday, February 20, 2007 6:55 PM CST

Kind of a lot to report. First, today is our son Ryan's 11th birthday! Happy birthday to our middle and much loved child! As for Kyle, today was clinic day, and definitely fits the good news/bad news format:

Good news: Kyle's counts are great, he's had a good month of eating and feeling well, and his spinal tap seemed to go very smoothly, as did the clinic day, until the bad news.

Bad news: When the nurse went to de-access him (pull out his port needle), we both immediately noticed his chest was VERY swollen and had obvious infiltration (leaking of transfusion fluid - in this case IVIG - into the tissues of the chest wall). Yikes. This created a lot of anxiety and attention. Most kids would complain of pain and discomfort if their IV infiltrated, but Kyle's high pain tolerance and lack of verbal skills combined to give us no alert. The needle probably got dislodged from the port during the spinal tap or upon transfer from bed to chair. I was afraid this would cause some damage or require an inpatient admit briefly, but soon learned that the IVIG leaking isn't like chemo leaking - since it's a human protein it should absorb into the tissues without any damage. It also should still have some effect in helping Kyle, since the absorption into the tissues is like a shot in a way. The only troubling thing was that these are all "shoulds" - since this hasn't really happened there before that I could tell.

Tonight Kyle's chest is still swollen but not as freakishly, and he's been just exhausted - fell asleep in his chair, in the car, and asked to go to bed early. I'm told this fluid buildup can feel like a bad, stinging bruise, and he's not happy to have anyone touch it, but he doesn't seem too uncomfortable. I'm supposed to watch for signs of infection, but the hope is that it won't be infected and will recover just fine. It was certainly a disconcerting thing on the way out of what otherwise was a banner day - Kyle's last spinal tap and vincristine of treatment!

Kyle's ANC was about 4,300 - really high. That's not surprising since we hadn't upped his chemo from 50 percent. He's up to about a 75 percent dose now, and starting his last prednisone pulse (hooray). On March 9 he has his off-treatment appointment with the bone marrow aspiration. Yucky procedure, but the end (we hope).

Kind of an emotional day. On the way there I heard "He's My Son" on the radio, which is what we have a link to on Kyle's homepage, about a boy with leukemia. At clinic, they asked me to go through Kyle's chart and help figure out what beads he gets - they give beads for various things the kids go through during treatment. I still have to work on that with records from home, but one figure is final: he's had 23 spinal taps. He's barely 7 years old, and he has had 23 spinal taps. Then with the infiltration issue and his exhaustion this evening...well, let's just say that we are so ready to be done. Not a lot of hilarity and jubilation tonight; just some fatigue and quiet gratitude that we are almost there.

Prayers for Kyle's full recovery from the infiltration and a relatively easy prednisone week would be appreciated. Thank you so, so much for caring.

Thursday update: Kyle's fluid retention in the chest wall took a couple days but seems to be gone, and all seems well now. Hooray! We're in the behaviorally difficult prednisone week, but hey, at least it's the last one.

Tuesday, February 13, 2007 10:10 AM CST

I am writing today as the sleet pours down, ping-ping-pinging on my house and the five or so inches of snow we have so far. We are all tucked safely inside our house on this snow day home from school and work, though I'm working from home. Kyle is watching Sesame Street and boys are fighting with video games and the mess in their room.

Kyle is doing really well. He's feeling better and the cough went away. He's eating amazingly well! I had to tell him "no" to pudding last night after he had sausage and gravy over biscuits, green beans, yogurt, cheese, and cereal. I thought he might vomit! It seemed so unreal to say "no more" about food to my little g-tube-fed boy who has found eating so difficult. Not all days are like that, but he does seem to be trending toward more food. Still lots to work on, like chewing tougher and crunchier substances, some swallowing issues, and self feeding, but gosh, what progress. I'll be anxious to see what he weighs when he goes into clinic next week. His g-tube stoma is red, but we're ignoring that since he seems to feel just fine.

Next week is the big chemo, spinal tap, IVIG day. It is his LAST spinal tap and chemo before the end of treatment! Did you hear that? THE LAST ONE. He takes his last oral chemo March 9. After that, he'll have the bone marrow aspiration and we'll anxiously wait for results, and if all is well he'll start the monthly blood tests and we'll still anxiously wait for results for the next year. It's such an odd mix of relief and trepidation, but we're thankful.

Stay safe in the snow and ice if you're a midwesterner, and thanks for checking in. More next week.

Monday, February 5, 2007 10:57 PM CST

Greetings from the frozen tundra of the Midwest. It's -5 as I write, with some subzero double digit windchill, and the kids have a 2-hour delay again for the second day Tuesday. This is wreaking havoc with my work schedule, but oh well. They're happy. We all miss our dog Shades, but know she's free of pain. Tell your dog to brace itself if it comes near me, however, I'm feeling a desperate need to get a dog-petting fix at any opportunity.

Most important in our neck of the woods right now is this: GO COLTS! Our city is so hyped about their Super Bowl win. Kyle was very unimpressed with the game and went to bed at halftime. Sorry, Prince.

Kyle had been doing great. Showed his first sign of gagging, food refusal, and a cough today, but only very small signs. I can trend his symptoms better than The Weather Channel can track storm patterns, so I do wonder if he's getting sick or getting to the point of needing Zofran again, but I can still hope I'm wrong, and at least it's nothing horrible even if I'm right. I have spent more time hoping to be wrong in the last three years than probably in all my previous years combined. How ironic that you can be totally right about your child's health problems and not even get the opportunity to enjoy it. Whoever thinks God has no sense of humor needs to widen their perspective.

Happily, things are not too eventful now. (Okay, pretend I didn't say that.) And my mom's test results showed nothing dire, too. Here's hoping it continues, because in addition to enjoying being wrong, I also find a great deal of contentment in being boring.

Wishing you boring, uneventful days as well, and the wisdom to appreciate them. Wishing you too a warm home and soft bed and the willingness to thank God for it all.

Tuesday, January 30, 2007 9:58 AM CST

Hmmm, this should have been a "not much to report" Tuesday - no clinic this week, no chemo changes, etc. But this was a rather hellish morning, with the only possible benefit to that being that it makes for a more interesting read here.

Brad awoke first and checked on Kyle per usual this morning, and found that his mickey button was out. (That is the small device that stays in his stoma, or gtube hole in the stomach.) So up I go, being the one in the family who can replace a mickey button without passing out, and discovered that his hole was closing and it was very difficult to get the tube back in. I went downstairs to get water and some supplies and was greeted by a kitchen and dining/play room full of blood. Our dog was hemorrhaging and breathing heavily(you may remember she was diagnosed with cancer, too.) Back up I go for Kyle and, after several tries, I get the button tube in place - rather painfully for Kyle, unfortunately. But at least he didn't have to go to the ER, and he's doing fine now. Once he's settled, I go to find our dog bleeding profusely from the nose and mouth, and in obvious pain. To make a long story short, everyone said their goodbyes and got off to work/school, I cancelled my morning meeting, and took Shades to the vet to end her misery. The vet is sure her cancer spread into her throat and sinuses and spread into her lungs as well. So I stayed with her til she was asleep, and left, headed home to a house without any pet for the first time in more than 20 years.

Cancer sucks. It sucks in dogs, it sucks in adults, and it sucks most of all in children. I've seen too much of it. I HATE it. But it is a part of our lives, and having a child with it, we will be fighting it or remaining alert for it or praying it stays away for the rest of our lives.

Nevertheless, the sun is shining on newfallen snow. My little Kyle bounced back from the gtube insertion pain and is at kindergarten. He finished his prednisone pulse and just has one more five-day round of steroids before he's off treatment March 9. My other children are dreading the cavity fillings coming early this afternoon but looking forward to getting out of school early nonetheless. Cancer may suck, but life is good. God is with us. So breathe deeply and enjoy.

Tuesday, January 23, 2007 3:26 PM CST

I come to you with good news on Kyle but very sad news that Donovan earned his angel wings Saturday night. He was a wonderful 2-year-old that spent his life fighting infant ALL, and I ask you to keep his mom Melissa, dad Darren, brother Dylan and grandparents and other loved ones in your prayers. I wish I could be with my friend Melissa for his services this weekend, but just cannot. Words just aren't enough, but God knows what they need; just say a prayer for comfort and strength.

As for Kyle, we are blessed. He has finally begun to feel better after weeks of infections, low counts, etc. His counts are about the same as a week ago, with an anc of jsut over 1,300 and a hemoglobin of 10.2, so he's in "therapeutic range" and will stay on the same dose. His IVIG went well and he seems to have handled it better; not nearly so fatigued and not nauseated afterward. So we just pray he continues in this vein! He is chatting up a storm, mimicking what others say alot, and eating well. His oldest brother Brandon has strep throat and is beginning to recover.

I got the scoop on Kyle's off treatment plans. He will be off all chemo March 9. (yipee!) He'll continue on weekly Septra (antibiotic) for six months and prevacid indefinitely. His last spinal tap is Feb. 20 (his next chemo/IVIG appointment). Shortly after March 9, he'll go in for a bone marrow aspiration. That is to check for any remaining leukemia cells. In a day or two, we'll get preliminary results, and in another day or two, pathology results. About 2 weeks later we get the chromosomal study results back. The nurse practitioner called this good news, better news, and best news if all is well, and said it's a hard time for parents. Break out the wine. He'll have IVIG transfusions (which help his immune system and keep us in the clinic for hours each month) through March or April. He'll keep his port for about six months and then have it surgically removed if all is still okay. At this point, his odds are good for long-term survival. However, this time is also the most common time to relapse. Our NP said that kids with a high white count at diagnosis like Kyle generally will relapse early off treatment rather than later and usually fairly dramatically - not a lot of guesswork if it comes up. Still, his chances of remaining cancer-free are higher than his chances of relapse. For the first year off treatment, he will have monthly blood counts at the cancer clinic. It will take a while for him to regain his strength, immune system, etc., so going off treatment is not a magic wand, but he should slowly get stronger and (we hope) start gaining weight. His weight and gtube status will be monitored each month, too. So there will still be plenty to update in this journal if you'd like to stick around past March.

That's all the scoop. Hug your kids and count your blessings. Thanks for checking in. I'll continue to update weekly and especially after his Feb. clinic day.

Oh, and by the way -- GO COLTS! GO BEARS! It's the nirvana of Super Bowls. Brad and I were both big Bears fans as kids (my dad was a MAJOR Bears fan) and are now big Colts fans. We are rooting for the Colts, but what a sweet match-up. What fun.

Wednesday, January 17, 2007 4:02 PM CST

This is updated and edited from Tuesday's entry:
Kyle's counts today, Wednesday, are much better! His white count is 1700, his AGC 1429, his hemoglobin 9.5 and his plates 333K. Great news! He is starting on 50 percent chemo doses. We'd like to keep his counts about where they are rather than crash them, but time will tell. I was worried about him yesterday because he was again very reluctant to walk and the school called to say he was having trouble with balance and walking. But that seems better but not gone today, so I think and hope it may be just a minor injury. As for Kyle's red stools, that was almost certainly from the Omnicef. No omnicef, no red. So the intestinal bleeding concern is gone, thankfully. The greatest news of all is that I asked and found out Kyle's official off-treatment date: March 9! Hooray!

Please pray for Donovan Rassmussen and his family. His relapsed cancer is spreading fast and his doctors don't expect him to make it through the weekend. We pray they are wrong, we pray for more good family times however long or short, and we pray that God gives them comfort and strength no matter what. They are at www.caringbridge.org/in/babydonovan.

Sadly, our dog Shades, age 12, is dying. Not looking like she'll make it through the week. But she's resting and not in agony. She probably has cancer. She's old, and it's her time. But I hate cancer anyway, and now here it is attacking my dog, for Pete's sake. She's a great dog. Peaceful travels, good girl.

Sunday, January 14, 2007 12:28 AM CST

Sunday 1/14 update:
Kyle's poops turned maroonish in the last few days, with no red dye or red/orange foods to cause it. Frequent, soft and smelly. Caused concern (sign of lower GI bleeding and yucky dangerous diseases) til a great mom shared that her daughter had reddish stools and was rushed to ER for no need - turns out that Omnicef binds to iron in the colon and can cause reddish/maroon stools. Kyle has been on Omnicef for 18 days and is due off on Tues. I got a home test for blood in stool and will try it tomorrow, having botched it tonight, but I think all is well after all. Pray for Donovan - he needs help with his fight. And last but not least - GO COLTS! GO BEARS!

Wed. Jan. 10
Hi. Kyle has found a way to get to clinic again. He must REALLY like the new clinic at Riley North. He's been pale the last week or so, and was getting pretty tired, so I took him in today for a blood count. He's tanked again, and not from wine (though a little combo of wine and prayer sure helped his mom through the night before!). He is neutropenic, with his ANC at 145, white count 400, hemoglobin 7.8, and platelets 179K. The hemoglobin is just barely at transfusion level (under 8.0), but he has reticulocytes (immature red blood cells), so we're not transfusing now and will recheck in a week. He's off chemo for at least that week as well. The only cause we can figure is his cells are just pretty fragile now, that he's pretty much HAD IT with chemo, and fighting off that sinus infection took everything out of him.

The good news is that they looked for signs of relapse and found none. Whew. And he really doesn't feel too bad; he's still giggly and has decent energy at times; he just tires easily. So he approaches the end of long term maintenance with not a roar but a whimper. It's over in just about two months, and who knows what those will bring. Hang in there, my love.

In the midst of this, I started my new job and am really busy in my other one. So much for January being my slow time. Figures. Kids and Brad are back to school. Pray for the Morgan family - their daughter Jillian has Down syndrome and was just diagnosed with leukemia. They are beginning the journey we're winding down. I wish them strength and stamina in addition to healing and hope.

Tuesday, January 2, 2007 8:35 PM CST

Just a quick update since last Thursday's clinic news. Kyle seems to be responding well to antibiotics, and his black eyes are lightening and he seems to feel better. That's good news on the sinus infection front. He'll be on Omnicef for 20 days. Friends tell me their kids got c-diff on that drug, which Kyle has had before and is NO fun, so we'll be keeping an eye out for that. But I'm so happy he's better. Cough was gone but back today. He's walking fine. (Had I mentioned he stopped walking altogether one day and only scooted? Scary. But it didn't come back so it's just one of those - huh - things.) He's pale and I'm sure his hemoglobin is still a little low, but he's not ultra pale, so no need to run into clinic as of now. All in all it's good news.

He'll be off treatment in just over two months. Just three more treatments. I can tell his little body is just so tired. It's just worn out from it all. But gosh he's a fighter and a sunny soul. We can't wait for a chance to be off chemo and see how things progress once he can build some strength. Trying not to worry about things like late effects and relapse rates etc. Trying to effect world peace, too. Both unlikely but worth hoping for. ( ;

Please PRAY for Donovan and family. He is fighting hard and things are just beyond difficult for his family. He's at www.caringbridge.org/in/babydonovan. They really need your prayers. Thanks much. And happy new year!

Thursday, December 28, 2006 9:32 PM CST

Kyle was sick over Christmas, but overall, it was okay. On Christmas Eve at the church service, he suddenly got more sick. He had a cough for a few days, and that night, the cough got worse and he just felt awful. I hadn't seen him look that sick in a long time, and we were fearful that he would spike a fever and have to go to the hospital. Blessedly, that didn't happen. He wasn't much into the presents or anything, but we were able to travel to my Mom's. The day after Christmas, he wouldn't walk at all and scooted around everywhere. That was very concerning but improved the next day. Today he had his monthly chemo and blood counts and IVIG. They think he has a sinus infection which would explain his fatigue, feeling bad, cough, and very dark eye circles. So we think that's it, too. So he's on mucinex and antiobiotics. Tonight he laughed and giggled for the first time in days, so I think that's a good sign. His counts are weird - very high ANC (4463) and low hemoglobin (9.7) and platelets (141K). None of these need transfused at least, and are probably a reflection of the infection. Overall, though it sounds bad, it should be pretty fixable and he should be on the mend, we hope.

That's Kyle's news. We were blessed with family and presents and just a nice Christmas otherwise. We'll celebrate New Years Eve looking forward to 2007 at long last - the year Kyle finishes chemo.

Thanks for checking in! We hope your Christmas was wonderful and that the new year blesses you abundantly. Travel with God and your load will feel much lighter. People wonder sometimes how we stay cheery in spite of all this. It's a blessed mix of insanity and mostly a deep faith in the God that loves us all. I wish that for you as well. Hugs and hopes!

Monday, December 18, 2006 8:33 PM CST

Just a quick note to say that Kyle is eating well and had been feeling great on the zofran. He has had just a bit of a downturn at home, being noticeably more tired and more prone to tears. Stoma is a bit red so I'm wondering if his counts are going down, but it looks decent tonight, so I'll just see what tomorrow brings. He's eating great at school and pretty well at home, as long as it's something tried and true. My mom's gut tells me he's hanging in like a trooper but not feeling that well. I'm not sure he really will feel well until he's off treatment for a while. Despite this little downturn, however, he's overall doing pretty well and the zofran has been a big help. Each little bottle we pay $25 is lasting about two weeks, so it's kind of a pricey venture, but worth it nonetheless. With all his meds, CVS must be very fond of us. (Not as fond of us as they are of my mom, though; in her small town, she shops there for groceries and everything, and they send her a Christmas card!) I personally think we should get cards from the hospital and pharmacy, but then again, so should a lot of people.

Many thanks to Kyle's angels from Cancer Warriors. His birthday angel and Christmas angel have been so kind with gifts. He hadn't had an angel in a while, and it's so nice at this point. At 38 months out from diagnosis, it's easy to forget this little boy is still enduring chemo, nausea, spinal taps, day-long transfusions, etc. It's mind-numbing, I know. If we had the option, we'd tune out, too. Now is a good time to REALLY thank you for checking in on Kyle, still. Your concern is an expression of God's love to us. You are heroes of compassion. Thanks. While you're being heroic, say another prayer for Donovan and his family and for my friend Lisa. This will be difficult weeks for them.

Christmas is a week away. What a blessing. I think I understand especially well now that first part of John 3:16 - "for God so loved the world that He gave His only son...." Yes, that is some extraordinary kind of love. I hope you are feeling it, that he loves you that much. I hope you have some sense of how much that really is. There are no words. There is no price. It's free. The original "free love." Merry Christmas.

Tuesday, December 12, 2006 7:47 AM CST

Mostly good news about the little guy today! First, tomororw, Dec. 13, is Kyle's 7th birthday!! If you're here, go ahead and sign the guestbook if you don't mind; I'll read the messages to him. It's hard to believe my baby is 7 years old. At 119 centimeters (that's how he's measured at clinic) and 34-35 pounds, it's hard to believe it looking at him, too. He is small but mighty, though, and has been kicking cancer for more than three years now!

More good news is that the zofran seems to be doing a wonderful thing for Kyle. He is eating better, acting happier and more peppy, and just generally is perking up. It's terrible to think he's been dealing with nausea for who knows how long and we never figured it out. After all, he's been in maintenance treatment for 28 months! But it's nevertheless wonderful to have finally found a way to help him feel better. I hope and pray it continues to work. After all the insurance problems we've had, it's only fair to give thanks for insurance, too. This little bottle of zofran costs more than $300 and we pay $25 for it each time.

Kyle isn't scheduled to return to clinic until Dec. 28, quite a break compared to our weekly clinic visits of late! So far all seems okay with his upped chemo, but it's still early.

The play we did went wonderfully and I'm very glad it's over. The days now seem full of many things that we just have to pick and choose from, since we can't do four things at once. Our doorway is widened and ready for a new fridge, and Christmas decor and cards are not all done yet but getting there. The new job is picking up a lot but won't be in full gear til January, and the freelance job is still going, too. Kids have tons of homework just when they have no time to do it. It's just sweet life, and I'm so happy we're all well enough to join the fray. Please pray for Donovan and Thomas and families as they cope with relapses and fear, and with Lisa as she grieves her son. May they all somehow find the joy of Christ that is deeper than happiness and transcends all that is both bad and good.

Wednesday, December 6, 2006 9:24 AM CST

OK, I guess I won't be up for mom of the year award at the elementary school this year. I got a call this morning while in a meeting from the school nurse (never a good sign)saying that Kyle was vomiting and please come. So I show up and ask all the stellar mom questions: "How often? How much? How did he act before? How did he act after? Let me look at him now and see what I think." Most mothers would swoop in and scoop up their child and take them home after vomiting. In fact, that's exactly what I would do with either of my other two kids. But Kyle has been getting more gaggy, and the Zofran is due in today, and with his suspected chemo nauseau and his history of reflux, not to mention how much school he is missing already, vomiting is not an automatic ticket home. They said he was too tired to stand and very lethargic before vomiting, but by the time I got there he was perky and smiling and back to himself, ready to hit the playground, so I told him to have a great day and left. I at least offered to come back if he got worse. Maybe that will keep child protective services away. I told an old friend recently that I'm not the same person I was before Kyle was diagnosed. There's one thing right there: Vomiting is no longer cause for any undue alarm. Neither was the g-tube mickey button that popped out of Kyle's tummy sometime early Monday morning and that I replaced at 5 a.m. in the dark (while standing on my head...ok, not really). In fact, it takes a freaking big deal to get me really worked up.

Relapse would be one of those big deals. I am so thankful Kyle is still winning his fight, despite these little setbacks. Please pray for Donovan and Thomas, both of whom are dealing with serious relapses.

The vomiting is just a little clue that we really do need to try the Zofran, which blessedly will be covered by our insurance at a higher but decent copay, which is ok considering the small fortune it costs. Kyle completely lost his gagginess and vomiting and ate better while off chemo, and now all those issues are back, and worse now that his 6mp was increased. The Zofran comes in today, so I'll give it a try tonight.

Kyle will take the upped dose of methotrexate tomorrow night, and I pray the upped 6mp and the upped methotrexate get his counts where they should be but don't crash them. Upping two drugs at once is always an adventure.

Thanks for hopping on this ride with us. It's a long one, I know. Have a good week!

Thursday, November 30, 2006 9:03 PM CST

Kyle had a really long day at clinic but he's doing pretty well. His ANC is still up to about 2900, so more oral chemo increases. Since restarting chemo, his appetite has decreased and he's gagging occasionally again. He did so well by the end of his 29 days off chemo, that I think many of his GI issues are from treatment. His NP says that some kids get nauseated from 6mp, so we're trying Zofran orally. He can't really tell us if he's nauseated, but we're going to see if the Zofran helps. Zofran should be called liquid gold, so I'm sure our insurance company will be thrilled.

He was totally wired and really ticked off for his spinal tap this time. I ended up holding him on the bed and the NP ended up on the bed, too, to give the tap. She said she thinks it's the first time she's ever climbed onto a bed to give a spinal. He was very resentful and seemingly unaffected by the double dose of Versed until after it was over. All in all, we were there about 6 hours. I used the time to do about 2/3 of our Christmas cards, which has become an annual tradition, doing Christmas cards at all-day clinic sessions. I told them when he's off treatment next year I may just show up to do Christmas cards. They said I could stay longer waiting for blood count results. Oh, that's right - even after he's off treatment in March, he'll still be heading there monthly for bloodwork.

All in all, it's pretty good news. Most importantly, please pray for Donovan Rassmussen, who has relapsed after his second transplant and who is facing very poor odds. Please pray for their whole family. Please continue to pray for my friend Lisa as she grieves the loss of her son to a car wreck. And hug your children, a lot.

Thanks. Brandon and Ryan open in the play I've been directing this Friday. We have five shows this weekend and next. Jobs are busy, homework heavy, and the house is as yet undecorated (and uncleaned), but I'm hoping for Saturday. My little boy with cancer is home with me, as are my husband and other boys, and the rest of it probably just doesn't matter much. Bless you!

Wednesday, November 22, 2006 2:04 PM CST

Kyle is doing great. He had his CBC today and his counts are all up, with his ANC just over 3,000. This is after 29 days off chemo. What a reason for thanksgiving! So, he's back on chemo starting tonight. He's still on Keflex for cellulitis, but should be off this weekend. That's a blessing, too. Keflex also protects against strep throat, and big bro Brandon has been off school all week and was diagnosed with strep today. So he's our sickie, but it turns out Kyle has been protected from it all along. We're hoping it doesn't run through the rest of the family, and that Brandon recovers quickly now that he's on antibiotics.

Four weeks off chemo have agreed with Kyle - he's happier, healthier, and eating better than ever. So it's a little bittersweet to put him back on treatment. But that's the plan to keep him well, cancer-free, and off chemo permanently in March, so we will do it. At least the IVIG transfusions should help him through the winter.

He'll get vincristine, a spinal tap/spinal methotrexate, and IVIG next Thursday - a full day at the clinic. I'll update more then.

That's all our news. Have a very happy Thanksgiving. We are very thankful for all of you who care so much about Kyle.

Thursday, November 16, 2006 5:18 PM CST

Today, I helped my friend Lisa say final earthly goodbyes to her 25-year-old son Michael, who was killed in a car accident Sunday. I never thought my friends would gather for a child's funeral unless it was for my own child. I am so grateful for all 3 of my children, and that Kyle is so far successfully fighting leukemia. But I am so, so deeply sad for Lisa. Please pray for her.

Kyle is dealing with a couple of issues, but is nevertheless feeling very energetic, probably because he's been off oral chemo for so long. His ANC is still low, in fact lower than last week, at 576. So he is starting his fourth week off chemo and Septra. This is the longest he's ever been off chemo, so it's a little worrying, but again, he looks pretty good. He does have cellulitis around his stoma (our telltale sign of neutropenia), so he's on an antibiotic for that. So he goes back to clinic next Wednesday for another CBC. I think that will be our fourth or fifth week in a row there. We like those people, but considering we should only be there monthly, it's entirely too much!

His foot sore is hopefully taken care of through an adjustment in his orthotics. Other Kyle news: he performs in the church Sunshine Choir for the second time this Sunday.

That's about all the news on the Kyle front. Tune in next Wednesday for an update, and then it's Thanksgiving already! How did that happen??

Monday, November 13, 2006 9:41 PM CST

Please, please pray for my friend Lisa and her family. Her 25-year-old son Michael was killed in a car accident Sunday morning. Our friend Anita and I were with her at the hospital. She spent today picking out a burial plot, casket, and other unimaginable things. I have spent the last three years fighting hard for my youngest son's life. She lost her oldest son in one horrible instant. It is impossible to make any sense of this. Just please pray for their comfort and for whatever God knows they need. Words just don't do it at a time like this. My heart aches for her and her entire family.

As for Kyle, he is here. All my children are here. Thank you, God. Kyle has been feeling a lot perkier and is funny. That's great, and I'm so happy to report it! He had been so tired and droopy. He is having some skin issues, though, so we wonder about his counts, which have been low for three weeks now, and that's how long he's been off chemo. I'm taking him to the orthotics specialist tomorrow to see if he needs new braces - he's developed a sore on his foot. And the skin around his gtube stoma is pretty red. We'll see what his counts are on Wednesday. I'll try to update more then. Michael's visitation is Wednesday and his funeral is Thursday, so I'll do as much as I can.

I started my new job, as PR director of VSA arts of Indiana, an organization that provides arts opportunities for kids and youth with disabilities. It is perfect for me. Communications, the arts, and disability services. It's about half time with flex hours, and I will still freelance. And I never would have investigated this or would have got this job without Kyle. What a world he has opened up. What a wonderful world in so many ways. Our church's special needs parent network started tonight, and our speaker was great, and we had 18 guests, and it was just terrific, though hard to focus on while thinking of my friend. If you want some great company, spend some time with people who have disabilities and their families.

Please also pray for Conner, a little Indiana boy with Down syndrome and leukemia, who has had a horrible time and may have had a return of cancer in his brain.

Life now is full of wonderful blessings and horrifying tragedies. Please pray for those facing those horrors, that God will light their way and hold them close. And say a praise of thanks for all the blessings we have, both big and small. Thanks. More on Kyle later this week.

Wednesday, November 8, 2006 8:38 AM CST

Kyle had a long day at clinic Tuesday receiving IVIG. We got there at 9:30 and left at about 3:45. He did well with it. He watched TV all day, and I found out again how exhausting it can be to sit all day with your child tethered to tubes and an infusion machine. He got a little flushed, and for hours afterward was nauseated, but those were the only problems. IVIG takes a few weeks and at least a couple doses to really start making a difference, so we'll see, but I'm very hopeful.

Kyle's counts brought good and bad news. Good news: his hemoglobin is 11, which means his body held on to the transfusion and isn't chewing up and spitting out red cells. His platelets are way up over 400,000. All this indicates that his body is rallying. His white count is still low, however, at 1,600, and his ANC is down rather than up to 650 (even after prednisone!). This probably explains why he has been so quiet and tired. Every individual who works with Kyle - teachers, Sunday school teacher, therapists - has commented about how tired he seems. I hope his counts and his energy will be bouncing back soon.

Due to the low ANC, Kyle is off chemo for the third week in a row. This is not a good thing, but at least he's well into maintenance. His nurse pratitioner tells me she really believes he had parvovirus, and the symptoms do fit. She thinks from his counts that the virus has left the body (like Elvis left the building) and that the white/neuts are just the last thing to recover. She's hopeful that he'll be rebounding soon, and he will have another count in a week. In three weeks he'll get IVIG again along with an LP (spinal tap) and vincristine. Hard telling how many hours in clinic that will entail!

He still has the cough, but slightly less frequently, still has gi and feeding issues, and still is the cutest little guy I know. I received a note from the school complaining of his six absences so far. Those are just the full days he's been gone. Bad timing for this form letter, as I opened it while caring for my retching little boy after a full day of intravenous immunoglobulin, for which he apparently earned his seventh absence this year. I have a call in about it, and really, I know it's just a form letter. But if they knew how many days I send this child to school when he's worn out and feeling cruddy (like today), just so he can learn and have a normal kid life, and how many days I have to keep him out for treatments or illness when I really would give anything at all just for him to be able to go to school most days feeling well.... Honestly, Down syndrome is the least of Kyle's problems. It's his health that is holding him back the most.

Thanks for checking on him! We're getting there. Lots of other family news, but I've droned on long enough, so another time. Blessings to you and yours!

Tuesday, October 31, 2006 2:27 PM CST

Singing praises to God today. Kyle is improving. His blood counts are trending up. This means we do not have to worry about relapse or chronic anemia, which were both very real concerns. He has a lot of reticulocytes now, so he's building his own hemoglobin after the transfusion last week, and his hemoglobin is 10.9 (up from 6.0). His platelets are 192, up from 169. Those had been floating down and can be a relapse sign, so his NP said she was relieved to see them coming up, even though it wasn't dreadful before, as was I. His white count is still low (1,200) but much better than the 500 of last week, and his anc is 744. This is not officially neutropenic but is too low to restart oral chemo. He had the vincristine today and will have prednisone this week. The pred always raises his counts, so when he gets counts again next week, they'll likely be high enough to start chemo then. I just hope they aren't highly inflated by the pred and then crash with the chemo, which has happened before.

However, he'll get a big helping hand from IVIG. His onc suggested we put him back on IVIG immediately and through the winter, and I wholeheartedly agree. Last year the IVIG (intravenous immunoglobulin) infusions really helped him stay well and keep his counts up. Since his IgG level is 350 and he has already had this weird illness and needed transfusion and to be off chemo, it seems that IVIG is the wisest thing to do. Infusions last 4 hours or so; his first will be next Tuesday.

We suspect it is viral and perhaps bacterial, too, that is causing his cough and congestion. He sounds a bit croupy and the NP said his upper airway sounds coarse, or junky. He will go back on zithromax (antibiotic) and is to have albuterol nebulizer (breathing) treatments at least once or twice a day. He hates those last I knew, so this should be an adventure. Kyle may have low muscle tone, but I remember he could pull that breathing mask off with Herculean strength.

Still lots to take care of and keep us busy, but gosh, what wonderful news overall. We are buoyed by your prayers! His reticulocytes went from ZERO to HIGHER THAN NORMAL - totally unanticipated and a sign that something really revved up his red cell building ability. I think it's entirely possible that that "something" was the result of many prayers. Thanks so much!

Fisherwoman Beth, Uncostumed Brad, Thing One Brandon, the Grim Reaper Ryan, and the Cute Pumpkin Kyle (for Halloween!)

Monday, October 30, 2006 10:45 AM CST

Some of you have been checking, so just a quick update Monday. Thanks so much for your concern. Kyle is doing decently. He seems to be a little better; still a rotten cough, but not as frequent, and he's eating a bit better. Still pale, but not as bad, and still having periods of abdominal distension and fatigue. He has coped with school well overall and has periods of normal, sweet, smiley Kyle. Bottom line is, I have no clue and will know much more tomorrow after the blood count. We're prepped for a big day, chemo decisions, possible second transfusion, etc. I'm hoping we find a remarkably recovered blood count and get back to being boring, but I just don't know.

That's the cliffhanger, I guess; I'll update Tuesday as long as there's time between that and trick or treating. Kids are converging on our very cluttered house for a big night. Kyle will be a pumpkin. He's our cute little pumpkin. Yesterday was his three-year anniversary from his leukemia diagnosis. Almost half his life. He has made it through a lot and is still the cutest little pumpkin we know. Thanks for caring about him.

Monday, October 23, 2006 1:07 PM CDT

Tuesday Update: I'm keeping yesterday's news in, since it is important and lets you know what this is about. Kyle's red blood cell transfusion went fine. It took about 2.5 hours and we were there for a total of 3.5 hours. His reticulocytes show that his body is not working hard at all to make red blood cells, so they think he has an infection, probably viral, that suppresses the marrow, etc. He's being treated with zithro for mycoplasma, which is bacterial, but it could be parvovirus or a family of viruses similar. His platelets are 169K today; were 177K yesterday. His white count is still 500 but his ANC is about 350, so he can go to school if he feels well enough; we'll see. Given the test results, they think his hemoglobin won't stick and he may need a transfusion next Tuesday. All chemo and septra is held, and they want to take counts Tuesday (his regular clinic day) before deciding whether to even give vincristine. They'll also do a type and cross and we are to be prepared for another transfusion that day if needed. It is very much a wait and see thing. Kyle doesn't feel that bad, but it is concerning. This does have a remote chance of being relapse, but is much more likely a nasty virus that affects hemoglobin. All we can do now is wait and see, which is something I particularly despise. Pray for healing for Kyle and patience and peace for us.

Back to Monday's update:
Again, more than a week since updating, and again, it's mostly because Kyle is so up and down, it's hard to know what to say. I think I'll go back to updating more often; good days and bad. For those of you who like the bottom line, Kyle is pale and tired and coughing a lot, and today I took him in for a blood test and check before his endoscopy scheduled for Wed. His blood count showed low hemoglobin (6.0) and white count (500), so he needs a blood transfusion and is neutropenic - so he's homebound and off chemo. The endoscopy is postponed indefinitely. He also had a chest Xray today.

For those of you desiring more detail, Kyle has had some good days, but his overall trend has been downward. I thought he seemed very pale, with white lips, late last week. I also thought he just seemd "not right." There is really no medical reason to suspect his counts are off, so a call to the clinic resulted in deciding to wait and just do a count on Monday, to be sure he was ok for the endoscopy. I asked on that call what his IgG (immunoglobulin) level was that we tested last time, and it is 335, well under the normal range of 500 or more, but over the mandatory IVIG level of 200. (IVIG is intravenous immunoglobulin transfusions.) Kyle was transfused last year after a time of getting sick and having bouncy counts and being off chemo a lot, and it helped him a lot. Still unsure if we'll go to IVIG this year; they like to wait til he's had several bacterial infections, but I'll probably push for it if he has this count problem for more than a month.

Anyway, this Monday count is what revealed the awful counts of the first paragraph. Though his lungs sound clear, he had a chest Xray to be sure he has no pneumonia or another condition that involves diffuse mucous in the lungs. He is on zithromax starting tonight and a decongestant. When he gets the red blood cell transfusion Tuesday for the low hemoglobin, I'll find out the results of the chest Xray, and his NP said we'd know then if the zithromax is sufficient or if he needs something else, which I assume would be IV antibiotics. I don't think there is much of a chance of being inpatient for this, since he is fever free, but that's always a remote possibility. His NP also said she is not "hitting the worry button" (aka worried about relapse) since his platelets are ok, but of course any time that counts go wacky for no apparent reason, that's a remote concern as well.

Kyle has had a good run of it lately, really since last spring. It's been a long time since we've been homebound and even longer since we've been lounging in the infusion room while he gets a blood transfusion. (Sadly, they don't serve margaritas there.) This all used to be routine, but now, it's a little harder to swallow. He was diagnosed with leukemia three years ago this coming Sunday. I had two different nurses remark to me what a long, long road it has been. This part of treatment should be easy; just a coast home, really. So yes, it sucks. Just pray that it's nothing serious and that Kyle feels better and recovers quickly. Thank you, and I really will update soon. I'll likely add something to the top of this update on Tues. and then update again in a few days. Prayers too for all the kiddos going through so much more.

Thursday, October 12, 2006 9:45 PM CDT

I'm sorry it's been so long. Work has been so busy and I've been wiped out after finishing usually after midnight. (Life of a freelance writer and working mom.) I am grateful for the work. Kyle's last couple of weeks have been up and down. I'm never sure what to update because some days are great, some are kind of bad, and many are inbetween. He is gagging less and eating more in the morning, and yet sometimes he still has problems. He nearly threw up at the Buddy Walk Saturday and clearly felt awful that day. He was really wiped out at school Monday. But by Wednesday he was full of fun and energy and humor. Today is more subdued but still okay. Weird poops that are kind of white and yellow and shimmery. (Sorry so graphic!) He is due to have an endoscopy Oct. 25. Not sure if this is the right thing to do, but something is going on, and we need to see if it's something in there we can treat or if he is just struggling with treatment, as his oncology NP suspects. I think it could be either or - perhaps most likely - both. We'll see.

Nevertheless, the Buddy Walk was an absolutely beautiful day, and the team raised more than $1,400! Go Kyle's Buddies! No final walk figures, but they said it raised well over $200,000. Lots of good to be done with that. We raised more than $300 for the Leukemia Society, too. Thanks to all who gave to either or both causes! Kyle sure inspires a lot of good.

Kyle was evaluated for the Aged and Disabled/Medically Fragile Medicaid waiver and will likely qualify. In some unknown time a few months from now, he will get Medicaid coverage of some things (probably including his feeding formula - big sigh of relief) as well as some respite care (in-home care by an aid or nurse). Not a swell thing to know your child is medically fragile, but hey, every cloud has a silver lining, as they say.

Ryan is selling popcorn like a pro. Brandon has a band concert and a mock gymnastics meet Saturday - at the same time. Since we have not yet figured out how to be two places at once (though I personally would love to sign up for that ability!), he's doing the band concert. He's the first chair of the baritone section!

Now for something completely different - sleep! Good night and God bless.

Friday, September 29, 2006 2:16 PM CDT

I'm sorry for those of you checking regularly that I hadn't updated this week; Kyle's progress has been slow and gradual, and life is busy. But I'm happy to report that he really seems to feel much better. His eating is still hit and miss and his mornings still plague him with some nausea and no interest in eating, but less so than last week, and he is eating much better in general. His impaction is gone, and the diarrhea that plagued him afterward from the miralax is mostly gone, too. He clearly feels much better! Thanks for all the prayers.

Still many questions, such as will he again get a hidden impaction, does the morning nausea suggest an increasing problem with reflux, and are there any other GI issues or other issues involved? His celiac screen still is not in and probably won't be until next Tuesday. If that's positive or if his nauseau symptoms don't pass, he'll have an endoscopy. That is still pretty up in the air. I can update more about this after we get the celiac results and see how he does into next week. Kind of a one day at a time thing. We're pretty good at that by now!

Next Tuesday he also has his monthly blood count and vincristine, so I'll be sure to update after that. He'll also get a weight check, so I can see what this barely eating period did to him in that regard. I so appreciate all the concern from local and online friends. It's been a worrisome week or so, but I'm happy that the impaction is gone, at least for now, and that Kyle's smiles and spunk are largely back. Praises.

Brandon plays in the band for the high school game tonight, kind of a band recruiting tool, it seems. Ryan's Cub scout/Boy scout popcorn sales start Saturday. This really is some of the best popcorn on earth; be sure to get with Ryan or any other scout you know if you'd like some starting Saturday. I walk in the Light the Night Walk for leukemia on Sunday evening; maybe with Kyle, depending on the weather and how he is feeling. Then the Buddy Walk is next Saturday. Thanks to all who have donated. If you'd like to donate or walk with us, just check the info in the journal history or shoot us an email, and we can get you fixed up!

Happy fall. Enjoy your beautiful week. Prayers, please, for Donovan Rasmussen (www.caringbridge.org/in/babydonovan) and for Clare Schmidt's family (www.caringbridge.org/md/clareschmidt). It has been one year since Clare's passing; what a beautiful, sunny girl, and what a special family. So many wonderful people still lose children to this disease. So many wonderful children survive years of treatment and live with late health and cognitive effects of that life-saving treatment. Much work is left to be done. Many prayers must be said. And every day must be enjoyed for the holy gift it really is.

Thursday, September 21, 2006 10:18 PM CDT

Kyle had an appointment with the gastroenterologist's nurse practioner today. After 9 days of gagging coughs, occasional vomiting and increasing fatigue and malaise, I called yesterday when he stopped eating. They got him in right away - this, the office with the reputation of having a 3-month wait to get in. I just felt after all this time with weight and other gi issues, he really needed to see the gi office specifically. I am very glad we went in. The NP was great, completely understood my concerns, and ordered all the tests he needed. She wondered about celiac, which I have as well, and I told her he'd had the blood test and it was negative, but his IgG levels are low. She instantly understood that a low immune system negates the celiac blood test, and told me about a new genetic screen for celiac. She ordered that and also ordered a sinus Xray to rule out a sinus infection as the cause of all this, and a KUB (abdominal Xray) to see what's going on there since he's had poop issues.

So, off we go to a series of waiting. I would sing to Kyle, "wait, wait, wait," and he would imitate me while signing wait, which is wagging your fingers on both hands, palms in. It was cute. He hated the Xray, which took forever, and he hated the blood draw - the lab couldn't access his port, surgery couldn't get to it for an hour and a half, and they couldn't let me do it for them, even though I could have (which I hated but understood). So he ended up having it drawn from his arm like the rest of us, and hated that. Cry, cry. My poor guy. He's usually such a trooper, but these things were traumatic and he's not feeling that great.

Results are that sinuses are clear, but he has constipation with fecal impaction. I am too tired and perhaps too polite to go into the full details of this now, but he is on Miralax 2 times per day for 2 days and once a day indefinitely. The celiac screen won't be back for about a week, and once all the results are in, they'll look them all over and probably order an endoscopy for Kyle, to look for signs of bacterial infection or celiac or other malabsorption disorders, etc.

This is not leukemia. But he feels bad and this day was hard for him and thus for Mom, too. He's been through so much. It's not fair. Life, of course, is not fair. I know that. But it still sucks when it's not. I think God understands that.

On the up side, I took Kyle with me to the haircut place for Ryan's haircut tonight. There was a teenage girl with Down syndrome there and Kyle went right up and sat down beside her. Her mom and I got to talking, and another woman there said she has a son in special ed, and I noticed after a while that we were talking and laughing and had such an ease, such a casual joy about us, that everyone else seemed kind of uptight. I have actually been asked which is worse - leukemia or Down syndrome -- and that question just is flabbergasting to me. Leukemia is awful. Down syndrome has its challenges, sure, but having a child with DS is such a gift. In fact, having a child with special needs does something to you (besides making you tired). It humanizes you a little, I think. It crystallizes what's important and what just is NOT. It struck me again tonight how richly blessed we all are by this little person. If you don't have someone with special needs in your life, I urge you to go find one and befriend him or her. They need you. Maybe more importantly, I think you need them. We all do.

Please pray for Kyle. He doesn't feel very good. He's tired. His beautiful smiles are dimmer and infrequent. Please pray that his caregivers get to the bottom of all that's causing this and that we can take the steps needed for Kyle to feel better. Thank you. This is the second update in a week, and I would be happier if I had no cause to do that! Blessings.

Wednesday, September 20, 2006 8:05 AM CDT

Hello. Kyle is hanging in there. What a funny boy. He hasn't thrown up since school on Thursday, but he continues to have a gagging cough that sounds like he's nauseated, particularly in the morning, and is tending to not want to eat in the morning. I wonder if his reflux is starting to bother him again despite the success of Prevacid thus far. He has an appt. with the gastroenterologist's office next month, so perhaps she will have some input.

Okay, here is a later Wed update on the above: Kyle would not eat at all this morning, here or at school. He ate at feeding therapy but was not happy to do so and filled up quickly, refusing yogurt at the end. He is just not happy and his teacher and therapist both said he seems very tired and not himself. So, I called the gastroenterologist's office, and we have an appointment tomorrow. It's been too many straight days of this cough and lack of appetite; he already lost what he had gained at his last appointment, and I don't think we can mess around with this too long. I really have to wonder if there is something behind all this - he has dealt with failure to thrive and weight issues since infancy. Or maybe his reflux is just getting worse and the Prevacid isn't doing it anymore. Or maybe he has a virus. It's hard to say, thus the trip to the GI office tomorrow. I'll update if there is news.

Despite this and a continuing level of mild fatigue, he's doing well. Two time outs at school in two days this week, though, once for clearing a table and once for breaking crayons. He also is getting over his lunchroom phobia but now has developed a gym phobia. (Come to think of it, I had a gym phobia, too; I just didn't burst into tears when I entered the gymnasium.) Last night, he started a children's choir at church. It went pretty well. It's exciting for him to have an activity of his own. It's exciting to be able to sign him up for something, after all those months and weeks of isolation during the first couple years of treatment.

The other boys are in ISTEP statewide testing this week. Oh joy. Ryan's boy scout popcorn sales start Sept. 30. We can't sell before then, but just know it's coming. Yum! As for me, many work deadlines looming, plus Kyle's therapies, so off I go. Our special needs playgroup at church starts this Saturday; pray for it if you will, please. Please also pray for little Donovan as he is in a very yucky-feeling stage after transplant (he's at www.caringbridge.org/in/babydonovan). Thanks!Have a blessed week.

Tuesday, September 12, 2006 9:15 PM CDT

Thursday update:
OK, is the good report thing really a curse? Things really were good on Tuesday! I'm not superstitious, but gee. Kyle had to come home from school today - he was gagging and threw up. He's also very tired. Seems better here at home, though. Time will tell...

Here was Tuesday's update:
Kyle is really doing pretty well overall. He is tired but not horribly fatigued and seems to be feeling pretty good and is eating reasonably well. Still looks skinny, but overall, I'm happy to give a good report on munchkin. Actually, his mom is more newsy - I was on 5 days of prednisone at the exact same time as Kyle last week - 2 DeHoffs on "roid rage," oh no! I understand why Kyle seems like he has ADHD on prednisone - I felt the exact same way. It also lowered my immune response and I promptly got a rotten cold, which I'm now hoping I do not give to Kyle. Oh well. I can't believe all my little guy goes through so very often. So much of it can send an adult whining, even his mom, yet he just accepts and goes on mostly. He has so much love to share, and interestingly, so much wisdom to teach. He seems to live so close to the plane of God.

OK, getting heavy here, and I can't breathe, and I'm supposed to be helping with homework.... Before I go, I'll just put a plug in. Kyle is the poster child for Kyle's Buddies, our team for the Indianapolis Buddy Walk. We're raising money to help people with Down syndrome - and also for the Leukemia and Lymphoma Society through their Light the Night Walk. If you'd like to give to either, you can do so through making a donation, online or by mailing it by Oct. 1. Online for the Buddy Walk for Down syndrome, visit https://www.indianadsf.org/buddywalk/, then click on the �Donate to a Team� under �Teams� to donate online without registering to walk. Pick �Kyle�s Buddies� from the list and follow the instructions. To donate online to the Leukemia and Lymphoma Society in Kyle's name, visit http://www.active.com/donate/ltnIndian/1808_bdehoff

Either kind of donation will go to very good causes that help Kyle and others like him!

Thanks, and blessings!

Tuesday, September 5, 2006 2:37 PM CDT

Kyle is a stud. If you think you're tough, just try to put up with what this 34-pound dude tolerates. First, despite a week of coughing and fatigue and a med reduction of just one teensy methotrexate pill, Kyle's counts nevertheless rebounded to 1860. He actually seems to be fighting this virus. His marrow hasn't been strong enough to do that in ages. Go, little studmuffin! Second, he had another nasty LP (lumbar puncture, or spinal tap). It took the oncologist two pokes, and Kyle did not seem affected much by the sedation and was VERY alert. He cried, but he did great. I think he objected to being held still more than the gargantuan needle poking into his spine - twice. Meanwhile, I'm stroking his head, looking him in the eye, and saying, "It will be ok, Kyle." If he was a teenager I'm sure he'd say somthing like "What are you ON, Mom? These people are stabbing me in the back with a needle the size of a piccolo. This is NOT okay."

Despite the trauma, Kyle is doing well and happy to be kicking back watching TV. He continues to be fatigued and coughy. Nevertheless, he also is sweet and funny and increasingly verbal. The only other odd thing about his counts are that there are some indications that his immunoglobulins are getting low, so next month they will check his IgG levels and see if he may need IVIG transfusions again this winter to help him stay well.

I'm so very sad to report that Cam Dalene, the focus of some of my recent prayer requests, has passed away from leukemia. He was 14 years old. Please continue to pray for his family. Please keep up prayers for Donovan, who is doing pretty well so far fighting his latest relapse. What valiant souls, these and all the children fighting cancer with such determination and spirit. What lessons we all can learn from them.

In other family news, I'm writing an article for Indy's Child on the experience of prenatal diagnosis. Brandon is working on a giant social studies project. Ryan and Brad are just busy and working hard. We had a lovely time visiting grandmas during Labor Day weekend.

No clinic visits are scheduled for four weeks if all goes well. Prednisone starts today. Prayers for Kyle can just focus on helping him to feel better and have more energy, and of course to keep him well. Thanks much.

Tuesday, August 29, 2006 9:12 AM CDT

Gosh, Kyle is flirting with illness again, his counts are down ... by golly, school must have started! He is a trooper, however. Yesterday he had a temp at school that went up in the afternoon, so I rushed over to get him, only to get him home to find his temp went down and never went up again, and he felt great. Last night he refluxed and blew open his feeding tube connection, so he had a lovely bath in formula and stomach contents, but he was otherwise happy as a clam. So I sent him to school with a smile and a prayer, and am sticking close to a phone today. Fortunately, Kyle's teachers and school nurse are like other mothers to him, and I feel very confident they'll let me know if anything arises to worry about. We are so blessed this year in that regard.

Tonight I give him methotrexate. I am approaching that with a lot of trepidation, but if he doesn't have a fever and isn't actually ill, there's no reason to check his counts and/or not to give it. We are trying not to micromanage his counts and yank him off chemo unnecessarily, since the primary goal here is to fight leukemia. I guess I'll just confess my only slightly irrational mom worry - that the methotrexate will crash what's left of his counts, he'll end up neutropenic and feverish, and in the hospital for the third Aug/Sept. in a row. He's had a "just started school" hospitalization in every year of maintenance treatment, and I was REALLY hoping to avoid that this year. So I'll be giving his methotrexate with more prayer than usual tonight, and we'll appreciate any of yours as well.

Speaking of prayer, please keep Cam, Conner and Donovan in your prayers. All really, really need them. All are fighting pretty heavy odds. Thanks.

How about some good updates on Kyle? He's getting really good at colors. Stellar. Sign him up for the Color University. And he has befriended the assistant principal. Since that's the administrator who sits in on the IEP case conference, I have to wonder if perhaps he has political aspirations.

I will update again this week if Kyle gets sick or something, but gosh, I really hope not. Otherwise, his next chemo, counts, spinal, etc. is next Tuesday, so I'll update again then. Thanks. Sign the guestbook if you have time; we love to hear from you. Have a blessed week.

Tuesday, August 22, 2006 3:33 PM CDT

First I must pass on some urgent prayer requests. Please, please pray for these children. Donovan Rasmussen has relapsed again. He's just 20 months old and living far away from his Indianapolis home for treatment. His mom Melissa is a dear woman and friend. You can see him at www.caringbridge.org/in/babydonovan. I also just received a prayer request for a 2-year-old from Evansville, Connor, who has Down syndrome and leukemia, and is fighting an infection that spread to his brain and is in ICU on a respirator at Riley. Please pray for them and all the kiddos fighting this horrid disease.

Thanks. Now for Kyle. Much better news, praise God. He's hanging in there well. However, he has had a few bumps. He seems to have fallen victim to the first cold virus of the school year, and has an occasional deep cough and postnasal drip and fatigue. His counts today show that his ANC has finally dipped down, pretty dramatically compared to two weeks ago. His ANC is now 624. That's too low - the goal is 750 - 1,500. It's a good thing we checked at this two week mark since upping his methotrexate again; at least we can adjust. So, he's moving back to 4 methotrexate tablets tonight instead of 5, and keeping everything else the same. I'm a little concerned that he'll continue to drop anyway, but I agree with what they're trying. He'll still be in school (over 500 ANC is okay for school), but with it being so close at 624, I'm not sure what will happen.

So for Kyle, just pray for protection and his ANC to get where it's supposed to be. If it could bump up just a bit, maybe we could finally find THE chemo maintenance dose for Kyle. That's something we never really have nailed down. He'll be checked again in two weeks, which is also his monthly IV vincristine and every third month spinal tap/spinal methotrexate visit.

We are so blessed. Three truly wonderful boys fill our house. All are home. None are hospitalized. None are dying. How many parents fully realize the abundant blessings just in those simple things? God is with us, in good and bad, but we do say thanks for the good. And pray for those dealing with the bad. Bless you!

Tuesday, August 15, 2006 10:05 PM CDT

Hello! Just a quick update. Kyle is holding up with the school routine. The screamer has quieted, the IEP lunch issue was met satisfactorily by Friday, and Kyle is slowly warming up in class. Not bad considering the rather inauspicious beginning of last week!

Prednisone week was not bad. We gave him the whole dose at night, rather than twice a day, and he seemed to do better. Still teeth grinding and the attention span of a gnat, but much less drama. Not sure yet if that's a cause/effect thing or a coincidence, but you can bet we'll continue that one-dose thing next month.

Tonight was the first 5-pill methotrexate dose given without the count-escalating prednisone, so we'll see how he fares with this in the next week or so. Counts next Tuesday! Meanwhile, I've upped my own doses of vitamin supplements and exercise, to improve my physical and mental health and stem the tide of fat. Whoever said 40 is the new 30 clearly had not reached 40 yet.

Thanks for checking in on our pumpkin. God bless you!

ADDING AN URGENT PRAYER REQUEST!!! Our friend Melissa's baby Donovan, 20 months old, relapsed again. He's at Duke though they are from Indianapolis. It's been such a rough road, and they are such an amazing, generous, faithful family, and Donovan is just a teddy bear of a boy. Please pray for him. His site is www.caringbridge.org/in/babydonovan. Thank you!

Wednesday, August 9, 2006 12:38 AM CDT

Kyle's ANC is more than 2,000 for the third consecutive month, so this would seem to indicate that his marrow is recovering and stronger. That's the good news! The bad news is that an ANC that high is considered too high to effectively fight leukemia in maintenance, so they are upping his chemo again. This time, it's methotrexate's turn, and he'll be up to 5 tablets, which is just about his 100% dose. Who would have thought he'd be up there, when he used to be unable to tolerate even a 30% dose. His oncology team is a bit concerned about his ability to tolerate that and how much is too much, given his history and given the fact that he's heading into new germs at school, so we're rechecking counts again in two weeks.

This week is Prednisone week, and they've upped his dose a bit - oh joy. More moods and teeth grinding. That bad news is due to some good news, though: Kyle has grown! He's up to 16.1 kilos (about 35.4 pounds) and 101.7 cm tall (about 40 inches). This is wonderful news and means we won't have to rush off to other specialists just yet re. his lack of growth.

He started kindergarten today. I was in to help with lunch - being sure he eats and yet doesn't choke are huge issues for school. I arrived to find them not meeting his IEP requirements for a one-on-one lunch aid, so lots of conversation about that, but his teacher is already fighting that battle. If it's not resolved by tomorrow, I'll be fighting it with her. I spent time at lunch teaching what Kyle can eat, what his food signs are, and how he should be assisted. They were very interested and it was time well spent. Lunch is so important so that he remains safe but still eats, given the importance of his nutrition and calorie needs. In addition to the lunch issue, he hasn't spoken a word his first day and is terrorized by a cryer/screamer in the class. (Kyle shuts down and/or cries when someone else yells or cries.) He looked pretty upset when I arrived. Welcome to kindergarten, sweetheart. Big sigh. But I'm hopeful that, given time, these issues will work out. He has a wonderful teacher and aid with him, so lots of reason for hope!

Brandon is off for his first day of eighth grade (!) and Ryan is off adjusting to an unexpected new teacher in his 5th grade class, who isn't nearly as warm as the expected teacher. Brad and I are managing our worries and trying to catch up. Please keep all our kiddos in your prayers. Also and most urgently pray for Cam Dalene, at St. Jude with 100% relapsed leukemia in his bone marrow, and his faithful family.

Bless you!

Thursday, August 3, 2006 11:35 PM CDT

Kyle has been feeling better; thanks for the concern. Not perfect but much better. I think he's really bored. School starts in less than a week now; I think it will be good for him. Lots of questions about how he'll handle a full day, how it will work to take him out for therapies, etc. etc. But his new teacher in developmental kindergarten seems just wonderful, and I'm sure we'll work it out.

Tried potty training this past week; it was a wretched failure. I find training a mostly nonverbal child more of a challenge than I can meet now. Kyle isn't interested, either; anxious to get up, and will sit for a while and not go til he's off. I've trained two other boys, but this is a different ball game, and not one I have the energy for, frankly, unless there's some glimmer of hope. The DK teacher was very cheery about this, said it's no problem, one other student is still potty training, and maybe the peer modeling will help. Also, taking Kyle out for therapies is no problem. Trying a full day and possibly cutting back if he's too tired is no problem. Bless her. I think I could say, "Oh, by the way, Kyle grew three heads over the summer and vomits every hour," and she would still say, "Oh, no problem!"

He still seems to be holding his own with the upped 6MP dose. Counts and chemo are next Tuesday, and school starts the following day. I hope his counts drop to where they need to but no more, so he can start school with a halfway decent immune system. With him doing well off IVIG through the summer, I doubt he'll be getting that this fall and winter unless his IgG levels drop, so I'm hoping that his strength continues and can withstand the germ-infested world known as elementary school in the winter.

More news next week - clinic and school will make it more newsy. God bless you!

Thursday, July 27, 2006 10:20 AM CDT

Hello! Gosh, it's been a busy week. Kyle has been eating well the last week or so. I took him in for a weight check, and he's gained .3 pounds. Not bad for two weeks. We'll check again in 2 weeks at his regular chemo appointment. I need to send his diet summary to the developmental pediatrician. More direction on what to do or not to do will come in a couple of weeks, I think.

For the first time in a long time, Kyle seems to not feel very well. He's really tired, constantly sleeping in the car, and sleeping a good 12-13 hours at night. He wouldn't eat much yesterday. It might be from the upped 6mp dose, but he doesn't look neutropenic right now, at least not according to his gtube stoma barometer. We'll just wait and see. He could just have a little virus, I guess. For some reason, when your child has leukemia, it's hard to remember that your child can get sick or tired from garden-variety reasons like any other kid.

We need to register Kyle for kindergarten this week! I had to pick up a letter from the oncologist stating that Kyle can't have immunizations. Kindergarten registration requires current immunizations, but kids with leukemia can't have immunizations until they've been off treatment for a full year. Since their immune systems are compromised, the immunizations can actually give them the disease, or make them otherwise sick.

Our last camper gets home Friday night. It will be good to have everyone back again. One gone changes the whole family. Pray for Ryan that camp is great and he gets home safely. Pray too, on a more serious note, for Cam Dalene, who is struggling with unresponsive leukemia.

Enjoy the end of summer! Odd to say "end of summer" in July, but our kiddos are back in school Aug. 9! Yuck!

Wednesday, July 19, 2006 0:05 AM CDT

I can't believe its Tues., or rather Wed., already! Ryan is home from the first camp and Brandon is at camp. Kyle is freshly off prednisone, which made him weepy, moody, and alternatingly raving hungry and refusing food. Also with an attention span approximating a gnat. Have I mentioned how much FUN prednisone is?

My email correspondence with the developmental pediatrician has led us to tracking Kyle's diet for a few days and checking weights next week and again at clinic two weeks later. The ped and staff will look at his diet and see if they can discern any nutritional things lacking that would cause him to not gain/grow. If he hasn't gained in 3 weeks, they want to see him. I think we need to pursue this, but I have a bit of hesitation, as the developmental ped seems to frequently suggest things contraindicated in a leukemia patient. He also gives me the vague feeling that he doesn't believe we're feeding Kyle enough. Given the years of fighting successfully to breastfeed, then feeding pureed foods and Pediasure, then and now caring for a Gtube, taking him to two hours of feeding therapies a week, and spending at least 2 hours a day supervising his meals and intake, I find that a tad insulting. Nevertheless, the email communication seems to be improving our doctor/mother relationship, so I'll carry on and see where it takes us.

On a similar front, Kyle's oncologist's move to Riley Hospital North means we can permanently move to the Riley surgeon (previously referred to here as the Surgeon from On High) and cut all ties with the man we affectionately refer to as the Surgeon from H___. Since Kyle's sure to have future surgical needs, at the very least to one day remove his port and close his Gtube hole, I'm glad to have this change.

Kyle is quite the trooper and was full of hugs tonight. He and we all miss his brother and will be glad when he's home, though then it will be time to miss the other one on another camp trip. Keep those safe camp prayers coming, and the ones for Kyle's growth, too. Thanks so much!

Thursday, July 13, 2006 2:29 PM CDT

Kyle's last clinic appointment was Tuesday and went well. His blood counts are fine, and his ANC went up despite the increased methotrexate, which I believe is an absolute first for him. We're upping 6MP to between a 75 and 80% dose to try to get to the elusive 750 - 1,500 target ANC. He is a happy guy, though Vacation Bible School every evening this week is a bit too much for him, so we've had to switch him to every other evening, which is better. It didn't help that the story room featured a multisensory approach with kids yelling and adults spraying the kids with water spray bottles. Not exactly the best scenario for a kid with sensory issues. He freaked. All was well by the time songs came around, though. Kyle is quite a dancer.

He is exactly the same weight as last month, and as pretty much every month in the last 7. I've consulted with his developmental pediatrician by email, and it looks like we'll give it 2-3 more months and consult with his gastroenterologist. Handy, since it will likely take at least that long to get in to see her. He continues to eat in a manner that would make most women gain 100 pounds - biscuits and gravy, eggs with ham and cheese, oatmeal with whole milk, ice cream, pudding, yogurt, peanut butter and jelly sandwiches, more cheese... you get the picture. At least he's eating, even thought he's not gaining.

Please pray for Cam - he's having a rough time with leukemia. Pray for our older guys Brandon and Ryan as they are at various camps this month. Your continued prayers for Kyle are appreciated, especially as we address his lack of growth and tinker with his meds (historically a risky venture with Kyle), but I'm so glad not to deluge you with the horror stories of old. Eight months til he's off treatment! That brings great relief and great anxiety, both, but I'll bore you with that when we're closer to March 07. For heavens sake, that would be going WAY beyond the one day at a time rule!

Wednesday, July 5, 2006 8:09 AM CDT

It's been a nice holiday weekend visiting my mom and then home for the fourth for a good cookout and great fireworks show for our family of five. I felt like such a city chick lounging on top of a parking garage watching fireworks over the tall city buildings. Kyle loved it. He hated the home fireworks we used on my mom's patio - too scary. But the big, faraway ones were fine. He is feeling fine and counts seem to be holding. I still think he looks thin, and I remain befuddled (sort of) as to why he is not gaining weight when he is eating fairly well and getting night feeds, but I should get a better sense of this at clinic next Tuesday, and perhaps pursue a referral to investigate it.

The only bad news is that the Indy's Child magazine, which had sold a cover photo at a charity auction that was purchased by the Indiana Down Syndrome Foundation, featured a great photo of kids with Down syndrome on their cover. However, they didn't provide any info/coverage about the kids, Down syndrome, or the foundation, and instead prominently featured a story on prenatal testing that focused on finding out early while there's still time to decide and how the author was "fortunate" that her baby didn't have Down syndrome. Many of us are writing letters to the magazine before the foundation meets with them. I'll paste mine in below if you're interested.

Otherwise, life is good. I hope you had a good fourth. I am touched by the blessings of life here. A friend (one of Kyle's therapists) did some mission work in El Salvador recently and saw only 2 people with disabilities. No kids with disabilities, no kids with cancer, no kids with G-tubes. In some of these countries, Kyle would have died many times over. Now he's having fun with his family and saying, "Wow. Cool," to fireworks celebrating his country's independence. We give thanks to God for our freedom and for our medical providers, and yet pray for all the kids struggling in other countries that really offer them no chance for life. Have a good week!

My letter if you're interested:

To the editor of Indy�s Child:

What a beautiful photo you featured on the cover of July�s issue. How unfortunate, however, that you missed a wonderful opportunity for inspiring news and education, and instead made a choice that hurt several area children and families.

The photo was of three cute children with Down syndrome. This cover photo was auctioned off at an event benefiting kids with Down syndrome and leukemia, and the Indiana Down Syndrome Foundation paid for the opportunity to show a few of our wonderful and fun children. Rather than embracing this, your publication seemed to merely tolerate the opportunity, featured no information about Down syndrome or the foundation in this issue, and placed a cover headline and lead story about prenatal testing in the issue. The article�s author even expressed how �fortunate� she was that her baby�s testing did not reveal Down syndrome.

Prenatal testing is a valid topic for coverage and would be well-placed in a maternity issue. My concern is simply the correlation drawn to the photo of our kids, and the lack of perceptive coverage of Down syndrome. I understand how painful a prenatal diagnosis can be. My son�s Down syndrome was diagnosed 16 weeks into my pregnancy. I am fortunate that I found out more about Down syndrome � and chose to keep my baby. I am fortunate to be raising my now 6-year-old son who happens to have Down syndrome. I thank God for him every single day � just as I am thankful for my other children.

Indy�s Child could have focused on the joy of raising children with Down syndrome, or the good that the Indiana Down Syndrome Foundation does in our community. If you preferred more traditional news, plenty is around. Several people with Down syndrome and other developmental disabilities are competing in the first-ever National Special Olympics in July. Others are headed into post-high school education opportunities or interesting jobs this summer and fall, or are preparing to marry. A handful are fighting � and winning � against leukemia. Another young Hoosier with Down syndrome is on a national board of directors and travels the country speaking when she�s not busy working here at home.

More important than what our kids are doing, however, is who they are. It is perhaps the most important lesson of raising a child with any disability. You learn to appreciate them, and others, not for what they can do but simply for who they are. It is a life lesson that brings many advantages, and we families of people with Down syndrome are anxious to share it, and to bring a greater awareness of and appreciation for our children and others. Many in your community are deeply disappointed that Indy�s Child missed the opportunity to share this message, and are anxious to share other opportunities for you to bring news and information about children with Down syndrome and other disabilities. Trust us � the news is overwhelmingly good.

Friday, June 23, 2006 7:51 PM CDT

Hello. Kyle's eating so well, he had about 650 calories at feeding therapy today! That's the good news. The bad news is he vomited in the family lounge while the therapist was telling me all about it. Too much for one little tummy at once. But he's fine now, and ate spaghetti and peas for dinner. If he hasn't gained weight by next month's clinic visit, I will be asking many more questions and perhaps headed to a gastroenterologist. But the good news is that Kyle is happy and doing well, and seems thus far unaffected by the increased methotrexate Tuesday night.

If you caught "A Lion in the House" on PBS due to my last posting, many thanks. This was a special about childhood cancer on PBS. It followed five families. Now that I've seen it, I think it focused an awful lot on inpatient stays, crises, and end-of-life decisions. Some parents of kiddos with leukemia don't experience much of this. We have had our share of inpatient stays and life-threatening conditions with Kyle, so I do know that the special is honest and rings true. It also touched honestly on the problems of late effects of treatment and the worries of the time following going off treatment. It did, however, miss the minutia of life with a child living with blood cancer - the years of daily medicines, weekly or monthly outpatient visits, blood draws, spinal taps, worrying about blood counts and immunities, homebound times when counts are low, wild trips to the hospital when a fever is hits 101.5 or more, dealing with the child's fatigue and pain at times, worries created by new symptoms that otherwise would seem harmless in another child, etc., etc. But that kind of stuff is hard to make interesting for television. Heck, sometimes it's hard to make it interesting for us! But I do think the special showed an accurate window to some aspects of life with childhood cancer, and if you caught it, thanks again. If you'd ever like to see it, we have the tape and can loan it to you.

Happy summer. I'm working a LOT and trying to fit summer in. Jury duty next week for me, if I'm called. Brad starts his summer classes this coming week - one he's taking, the other he's teaching. Brandon's finishing summer band. Lots of kids over this week to play with Ryan and Brandon. Kyle likes the extra TV and playing in the backyard. Just life, really. Sweet, sweet life. Hope you're enjoying the blessings of yours.

Monday, June 19, 2006 7:44 PM CDT

Kyle made it through prednisone week well, with a huge appetite and just some moodiness. He is struggling today, however, not eating and very tired and teary. Must be "coming down." His upped methotrexate starts tomorrow.

If you are reading this in time, I'd like to encourage you to watch "A Lion in the House" on your local PBS station this Wednesday and Thursday evening. It's at 9 pm both nights in Indianapolis. You could also tape it and watch it later. I could tell you about it, but another mom had this on her child's website about it, and I can't say it any better: "I'd like to ask you all to watch something this week. Wednesday and Thursday, PBS will be showing the documentary film "A Lion in the House." This film follows five families affected by childhood cancer. Three of the children have leukemia. There are cures, relapses, and even deaths in this movie, I believe. It will be painful and sad at times, as it should be. But I expect you will also see laughter and hope and even joy. Children with cancer are children first, and they find ways to continue living even as their bodies fail them. It feels important to me that many people see this movie, from the general need to make public the faces of childhood cancer. But I also have a need to have friends and family watch this; I imagine us all together in a small theater; I imagine seeing this with love and support around us. But since that personal showing isn't going to happen, it makes me feel better to think that as we watch, our friends and family will be watching too. I know that I have shared much of the last 18 months (in Kyle's case, 31 months) on this website, but I suspect this movie will share more--more of what Fergus (and Kyle) has experienced, and more of what we haven't experienced but often fear. So, if you can bear it, please watch this movie, for Fergus (and Kyle),
for us, for all the families who can't just turn the TV off and walk away."

Thanks to Lauren, mom to Fergus, for that eloquent description. We are so grateful for how far Kyle has come. We are ever mindful, however, that he is battling a life-threatening blood cancer, that his biggest chance for relapse is not during but in the year after treatment, and that the woods has not really begun to clear - just thin. This is a life-altering experience, a "new normal," as many call it, and you can catch a glimpse of it on PBS if you're willing.

No, we're not depressed. It's summer and Kyle and kiddos are having fun. Our 19th anniversary is Tuesday. God is good. It's just cancer that sucks.

Love and blessings!

Tuesday, June 13, 2006 5:37 PM CDT

Hello! Sorry we were missing last week, but we were on vacation! Nothing fancy, but a stay near Sandusky and the Cleveland area gave us a chance to get away, do Cedar Point, Lake Erie and some museums/zoo, and just have time together. It was the first time in three years I did not research the area's children's hospitals before leaving. Kyle did great, though gave us some excitement when he pulled out the mickey button from his stomach (for his gtube night feeds). Fortunately, I had brought the kit for it with me and replaced it with no problem. Amazing what becomes no problem. We also had a day at Holiday World with friends yesterday. As Kyle sat munching hot dog innards and fries, I remembered that it was just two years ago that we were tube feeding him in that same park. He has come so far. Brad reminded me that it takes him 45 minutes to eat and it only took 5-10 minutes to tube feed him, but that's okay. Progress is progress, and it's a blessing.

Today was his big chemo/spinal tap day, and we went to the new clinic at Riley North Hospital for the first time. They are not yet in their permanent digs, but it was fine. His spinal tap went a bit poorly for the first time, requiring two pokes and drawing blood, which is not desired. Funny that his oncologist did this one; the nurse practitioner usually does. Kyle was pretty upset even under sedation, and slept a long time afterward. He seems fine now, though. I have not heard the results of the CNS fluid test, but his other counts are fine. Still a bit too high, so we're upping his methotrexate again just a half pill to 4. I declined a two-week count. (No sense in it - prednisone will raise his counts this week, the spinal methotrexate today means he doesn't get this upped oral dose for another week, so his counts won't have much chance to crash by then anyway, and if they do, we'll probably be able to tell.)

So, despite the troublesome LP (spinal tap) today, and a few problems with regurgitating night feeds, Kyle seems to be doing very well. (Yes, the irony of that statement did occur to me, but your definition of what is doing "very well" gets generous after you've been through a lot.) We're grateful. In other news, Brandon, our 13-year-old, was confirmed into the church. So, lots of blessings around here. Please pray for all the kiddos fighting for their lives. I'll update again in a week or so. Bless you!

Tuesday, May 30, 2006 11:28 PM CDT

This is a Tuesday full of mostly good news! Kyle was supposed to have counts done today, two weeks after the increase in his methotrexate. However, he's perky, eating well, looking well, and has no cellulitis around his stoma (a sure sign of neutropenia), so there seemed to be no reason to trek into clinic on this very busy day and subject him to pokes. His nurse practitioner agreed - knowing I've long been able to spot neutropenia most times - so he got his methotrexate again tonight and we'll press on. Let's hope I'm right. I personally think that if his counts were to drop, it would occur after this dose, which comes well after the count-raising prednisone. So we'll keep an eye on him, but so far, so good! His cough persists, but no worse than the last several weeks, so there seems to be nothing to be done about that for now anyway.

The only bad news is that work has picked up just as kids have been home for the summer - which is more of a mixed blessing than bad news. I'm cramming a week's work into 3 days and will be off to my high school theatre's 40th reunion show, clad in a ridiculous formal dress. How did I get myself into this? It will mean some time away from the family, another mixed blessing to be sure, and time with my mom, which is nice. It's also nice to be leaving Kyle with Daddy and Grandma when he's doing so well. One lessened (though not obliterated) worry there.

Sorry to be boring, but not really. As I have stated before, boring is good. On the 16th we'll be headed to the new clinic at Riley North for chemo/spinal tap. Kyle's oncologist used to be at Riley and is returning to the new north hospital, where he'll also be head of Pediatrics. We will miss St Vs, and this is a longer drive, but we'd frankly follow these people anywhere. They've done so much for Kyle. Anyway, more updates then if not before. And maybe once Brad gets home for the summer, he can help me update the pictures on here. Enjoy your June! Bless you!

Wednesday, May 17, 2006 3:48 PM CDT

Hello. Thanks for any concern re. Kyle. His chicken pox exposure is now in question, since the little boy covered in what his pediatrician said was probably chicken pox lost his rash without blisters or scabs. So, though we still are watching Kyle closely, it was likely a false alarm, and Kyle is on prednisone this week as usual on the week of his monthly clinic visit. His cough continues and a few little occasional GI symptoms (I'll spare you the details of THAT), but he is not otherwise sick.

I have learned an important life lesson: Do NOT take a small, language-delayed child prone to throwing things on store shelves INTO a small store strapped in a stroller on the week of prednisone, unless of course you want to stand in the long line of proper Scout moms and cashiers who look at you as if you should be able to shut this child up in the middle of his screaming, crying, writhing in the stroller meltdown. I finally resorted to telling the truth: "He had a lot of chemo yesterday and it makes him feel tired and overwhelmed sometimes." A little too honest perhaps, and not really kindly intended, but it did work beautifully to shut down the stares.

As for yesterday, Kyle had vincristine and a blood draw and check-up. His counts are still too good - about 2,400 ANC, so his weekly oral methotrexate is being upped to 3.5 pills. (It was supposed to be upped to 4 pills, but the nurse practitioner was hesitant and so was I.) This is the most methotrexate Kyle has been on since his early maintenance phase hospitalization. In the past, 3 or more pills was a "do not pass go" ticket to neutropenia. The theory is that he's stronger and healthier and should tolerate it. The reality is that it's flirting with disaster to let his ANC continue to hover well over 2,000. So whether the theory is right or not, we have to try. He'll have blood counts in two weeks to be sure he's not careening into neutropenia, and then his next chemo and count visit will be in four weeks, when he'll also have a spinal tap.

Four kids in our clinic found out they relapsed Monday. Horrors. Don't know their names due to privacy regs, but please pray for them.

Happy news: Brandon turns 13 on Thursday. I am the mother of a teenager. I don't know why this makes me feel old - if I'd had him when I was 16 like some kids over at the high school, I'd still be in my 20s. But I had him when I was 28, so you do the math. Oh wait, this isn't about me. ( ; Happy birthday to Brandon.

Happy days to you, too.

Tuesday, May 9, 2006 11:06 PM CDT

THURSDAY
Just a quick Thurs. 5/11 update: I found out today that Kyle was directly exposed to chicken pox at the special needs fair Saturday - before the kiddo broke out and at no fault of his family. Chicken pox can be lethal in leukemia kids, but is much less screaming-into-the-night alarming than it is when on heavy treatment/high dose steroids. We are just supposed to watch for it, and if he breaks out, we'll go in for an IV antiviral treatment. I think he also has to skip prednisone next week, since cp tends to be more severe in peopleon steroids, but I'll clarify that at clinic Tuesday. His vomiting of Tuesday (referred to below) lasted just a day, followed by a good day, followed by a day - today - of coughing, raspy breathing and massive diarrhea. Always an adventure! Back to Tuesday's post....

TUESDAY
Kyle seemed to be getting better and happier until today, of course, when he was full of opinions and wanting to play outside a lot, but very fussy and vomited three times despite still having an appetite. Not sure what is causing the vomiting - virus? reflux? drainage? etc? We will just wait to see if it persists and if anything else pops up to accompany it and give us a clue. Actually, pop-up balloons explaining symptoms would be a really good thing. Kind of like the cheesy "Blind Date" series, but actually practical instead of entertaining. Like if Kyle vomited, a little balloon could pop up that says "Just ate too fast. Don't worry." Or, "Virus creeping in. Keep me out of therapy tomorrow." You get the picture. Like an easy button, but with more words.

The special needs fair Sat. went awesomely. 150 guests, 30 agencies, perfect weather. Lots of folks wanting more programs and several wanting more church info. Raves from all who came and all agencies want to come back next year. None of this would have happened without Kyle's influence in my life and thus this ministry. To look around at it and know in my heart that its seed started in my little boy was a pretty cool and emotional thing.

It's late and I must retire. Up late partying - hah - if you can call helping with a 7th grade endangered species project a party.

Tuesday, May 2, 2006 4:27 PM CDT

Happy May! I took Kyle in today to check his counts, as his stoma has been red and itchy, but not spreading, and he's had a cough and just is so very tired in the afternoon and at night, and also is very emotional and unhappy at times (and no, it's not prednisone week). His counts are great, with his ANC at 2,400. This is good news, but it's still a bit frustrating that no cause is found for his unhappiness and fatigue. As for the stoma, they think it's yeast, and he seems to have a little yeast thingie going down on the backside, too, so we'll be applying cream to that.

We'll just hope things get better; at least his counts allow him to live life and stay on chemo to fight leukemia!

Please pray for Ray Newcom's family - my heart is broken that he lost his fight with leukemia. If you'd like to leave them a message, his site is www.caringbridge.org/in/rayspage. Have I mentioned lately that I hate cancer?

Our special needs fair is this Saturday at church. It's huge - 27 agencies represented! Prayers for it will be appreciated, that we can reach families with the information and services they need.

Kyle's Uncle Andy, Aunt Jill and cousin Joshua will be moving to the Richmond area - closer to us!! Praises.

Please pray for all the kiddos facing cancer and their families. And have a wonderful May. Kyle's next appt. is May 16.

Tuesday, April 25, 2006 9:33 PM CDT

I sit here not sure what to type. Kyle is still attending school, enjoying many moments of life, etc. Good stuff. But he is tired, very weepy and unhappy at times, and his stoma around his Gtube is reddening, as are his eyes. These all are the vague signs of counts crashing, which hasn't happened in quite some time - since the monthly IVIG transfusions kicked in. If you visited us last week, you may remember that Kyle's onc team wanted to withhold IVIG last week, thinking he would be strong enough to fight infection without it in the spring and summer. You may recall our doubt about that, despite our willingness to try, so you might imagine that we're a little uneasy. You'd be right. Since he just got off prednisone, his counts would be unreliable now, so I'll wait a few days unless something more definite, like a fever, shows up. If things don't improve, I'll probably ask for a mid-month CBC (blood count) next Tuesday.

Prednisone week tried all our patience and kicked the mini-ADHD into gear for Kyle. He also lost his appetite. The rest of the world eats like a draft horse while on steroids; Kyle loses his appetite. Some people dare to be different; Kyle has made it a way of life. The up side of his symptoms right now is that he is even more huggy than normal and very content to cuddle. I wish you all could have someone who greets you with a smile of such genuine delight and who hugs you as if you are the most wonderful gift on earth. Kyle is fully human, and fully capable of tearing the house apart, but his love.... It's the closest thing to God's love I have ever seen.

Many kiddos and families need your prayers. Ray, Cam, and Donovan are all fighting hard. Please keep them and all the kids and families facing cancer in your prayers.

In other and happy family news, Ryan did a great job in math pentathlon Saturday and has a bronze medal for it. Hope you have an awesome week, too. God bless you!

Tuesday, April 18, 2006 3:23 PM CDT

Kyle is doing wonderfully overall. His clinic visit revealed that he has regained his lost weight plus almost a pound - he's more than 34 pounds now! We aren't sure what made the dip last month, but his trends in kilos were: January, 15.2, February, 15.2, March, 13.9, and April, 15.5. We're calling March a blip and doing nothing as long as it doesn't happen again. Hooray for Kyle. We will continue to ply him with calories. No need to head to the gastroenterologist at this point.

His counts are great, even too great, with an ANC of 3,000. That usually is a clear reason to up chemo (too big a window for leukemia to slip through), but not this time. They decided to try to take Kyle off the IVIG transfusions, which boost his immune system. They think, if he were following a normal pattern, that he's gotten stronger after more time in maintenance and that the spring/summer won't bring the illnesses winter brings. However, Kyle is rarely normal, and last summer was full of neutropenia and cellulitis, so who knows. It's hard to say if he's been healthier due to increasing strength and ability to fight infection, or if he's been healthier because the IVIG allowed him to be healthier and fight infection. We will therefore stop the IVIG, not increase chemo even with the high ANC, and see what his little body does. We are to watch him for signs of infection and call soon if needed. I appreciate them not automatically upping chemo, as a protocol would dictate, but taking into consideration the special circumstances of our special little guy. We'll just pray we're doing the right things and will be able to fix it fast if it turns out we're not.

The hearing test results revealed a loss of some extent in the left ear for the high, soft tones. We're to follow up with his ENT. The audiologists are recommending a CT scan or MRI to look for abnormalities in the ear structure. I asked if the loss they see is a functional loss, and she said no, it shouldn't affect speech and language. I fail to see the reason to put the child through the trauma of CT/MRI scanning just for the fun of finding abnormal ear structure. What a surprise that would be, given Kyle's aversion to normality. His NP at the oncology clinic said the ENT may be worried about leukemia showing up in the brain/ear canal, but that the oncology folks are not at all worried about that and it's not happening, and we have tests and indicators to assure us of that. I will sort this out later, but I'm not inclined to do more testing, other than behavioral, unless I hear a really good reason. I try not to seek out new and creative reasons to worry - we have plenty of real reasons, thanks.

In that same vein, I've canceled the developmental pediatrician appointment - he was concerned about Kyle's weight and wanted to follow it. The weight is back to normal and I again see no need to involve more people in something that's already being followed; it seems like a visit there always turns up worries, many unnecessary, and I really have a low tolerance for that now, however well intentioned it may be.

I'm in the midst of planning a huge special needs fair at our church May 6. See www.speedway-umc.org under outreach, special needs, for info. As for Kyle, his next visit is May 16. We hope and pray for just therapies and life between now and then. Hoping life is good to you, too. Bless you.

Tuesday, April 11, 2006 10:34 PM CDT

Hi, all. Kyle's sedated hearing test went very well. It was neat and a little funny how we settled on his sedation. The nurse anesthetist wasn't happy with the typical plan for our floppy airway, stubbornly awake boy. She and our onc clinic settled on versed, which he gets for spinal taps, but I pointed out he typically doesn't sleep with just that, and sleep was essential for the test. I suggested a painkiller added like morphine. The onc agreed that was a good idea but suggested fentynal (sp?) instead since it is shorter acting. Together, we hit the jackpot: Kyle slept just long enough to get a really good test. The results show normal hearing in the right ear and a loss in the soft-volume high tones, but that part is a little confusing, so the audiologist is conferring with others and will let us know. It is probably a fairly minor loss that won't require hearing aids, etc., but I'll know more in a few days. Meanwhile, I'm adding "anesthesiologist" to the "nurse," "doctor" and "therapist" roles for which I can say "I'm not a (fill in the blank), but I play one for my son."

Kyle is starting to look a little alarming. He's losing hair pretty rapidly, and if it weren't for his long locks acting as a pint-sized comb-over, he'd be starting to look kind of bald, especially on top. A bit early in life for male pattern baldness, and a bit late in treatment for chemo baldness, but oh well...there it is anyway. Not sure about his weight. Today was awful - npo before the procedure, and no appetite at all until about 9 pm. All from the procedure. He slept most of the afternoon at home. Since he ate late tonight, I think tomorrow will be fine. Tonight was methotrexate night - all that extra med on a mostly empty stomach may not be a good thing for the morning, but that should be temporary. I remain stubbornly optimistic, which after all this time and despite times when all signs pointed the opposite way, must just be an innate gift from God. Thanks, God.

I will update again after next Tuesday's chemo and physical, and I hope will then have news about Kyle's weight and our general concerns. Before I go, however, I simply must appeal to you to consider helping our friend. Donovan Rassmussen has been fighting almost his entire 16 months of life against leukemia. He is from Indy but is in North Carolina at Duke for treatment of a bone marrow relapse, and he may be facing a testicular relapse. He has a long road ahead before he can come home, and it is enormously draining financially and emotionally on his mom, dad, brother and grandparents. They are unable to work. They are good, faithful, educated people who normally work hard for a good life, but they just need some help right now. If you can give even a tiny amount, visit their site at www.caringbridge.org/in/babydonovan. You can send a check to The Donovan Foundation to the address at the bottom of their page. I'm sorry to appeal for another family here, but they just really need it and really deserve it, and I know they would do the same for us.

Thanks, and have an awesome Holy Week and blessed Easter, from a balding but beautiful Kyle and his grateful family. God so loved YOU that He gave his only son for you. As a parent fighting for her son's life, I have just a glimmer of the enormity of that sacrifice. His love and forgiveness is a free gift - hope you find it especially sweet this week.

Friday, April 7, 2006 2:07 PM CDT

We've been out of commission a bit longer than normal; sorry if you've checked and found no news. Since Kyle's major weight loss surfaced 2 and a half weeks ago, we've been focused on eating. Now, if I can just stop while he keeps going! (; He's eating pretty well, usually getting around 1,500 calories a day with the food and gtube pumps - sometimes more, sometimes a bit less. I'm keeping a journal of his intake and calories. We've been told by a dietitian that 1,000 calories should maintain his weight and 1,500 should make him gain weight. His appetite has been pretty good, and I see no reason for him to not gain weight given his intake. However, I saw no reason for him to lose weight last month, either, so time will tell. He's been abnormally tired, falling asleep sometimes in a chair, etc., but when he has energy he's doing well. He has a small cough and some cold symptoms, too, but nothing major as of now. We are a bit concerned about him, but nothing is setting off major alarms, so we just have settled back into our default survival mode of taking one day at a time. I considered taking him in for a mid-month weight check, but figured it would produce no real action, that we'd just be waiting til the check on the 18th, and since he's showing no obvious signs of weight gain, it would just create new reasons to worry - and I don't really feel the need for new reasons. I can keep plenty busy fighting the current reasons, thanks.

This has been spring break, and we enjoyed visiting my mom, Nana, and visiting a state park and hanging out with some friends. It's been nice to have some family time. I'd ask you to keep our friend Donovan in your prayers. He's still at Duke fighting infant ALL relapse and has some new and worrying problems. His mom is a friend, and she and her husband are unable to work at this point, and need help. If you can give a donation, information about donating, and an address to donate, is at the bottom of his page, www.caringbridge.org/in/babydonovan. I wish I could help them. Leukemia is so draining on finances, and to have an infant relapse with out-of-state treatment is just triply so.

This Tuesday brings Kyle's long-awaited sedated hearing test. Prayers for that will be appreciated; any kind of anesthesia always causes some concern with Kyle's floppy airway. From that, we should be able to determine the extent of his upper-tone hearing loss. Kyle's next cancer visit is April 18 for chemo and weight check/physical - not sure if IVIG is happening again or not. I will try to return to my regular Tues or Wed updates. Thanks for checking in!

Thursday, March 23, 2006 10:50 PM CST

This is a definite good news and bad news day. The good news is wonderful - Kyle's counts look great, his ANC is 2,200, and he did fine with his spinal tap and IVIG. What a trooper. His counts are still "too" high, so now we're upping his 6mp to one tab on weekend nights (still a half tab weekday nights). The bad news is that Kyle has inexplicably lost more than three pounds in the last month (about 10 percent of his body weight), despite the fact that he has been eating more than ever, and I'm sure has generally been taking in more calories. He's having a few more lab tests, but all in all, we are stymied. Could be a malabsorption issue, like celiac or other. We are feeding him til he pops for the next month and reassessing at his next visit 4/18. If his weight is down further or unchanged at that point, he'll be getting an appointment with the pediatric gastroenterologist. At least his counts are good - the whole "sudden, unexplained weight loss" thing would be more scary otherwise. Still, this is pretty alarming and will be the focus of our lives for at least the next four weeks. It's kind of disheartening to deal with this after feeling like Kyle was doing so incredibly well with his diet finally and feeling much better. At least he still seems to feel fairly well and has a good appetite.

The IVIG transfusions that have helped him so much may be ending; there's a shortage and they need to use it for high-need kids, and they hope Kyle can get sick less in the spring/summer. Since he had low counts and gtube infections throughout last summer, I'm a bit dubious, but I understand the triage concept.

Thanks for any prayers you can say for Kyle and the many other kids fighting cancer. Special prayers this week for Hunter, who just had a CNS relapse of leukemia.

Wednesday, March 15, 2006 8:41 AM CST

Tuesday 3-21 update: Just a note to you wonderful people who check in weekly that, due to a morning snowstorm today, Kyle's big spinal/IVIG/chemo day has been postponed to Thursday. I'll update more after that. He is well other than a small wheeze yesterday and a significant rash on his face.

Last Wed. 3-15 update: Kyle is growing taller. Everyone is noticing it. I think it's from actually eating real people food! He is particularly fond of ham. He can say "ham" very distinctly and has a cute made up sign to go with it, and it is just so darn cute. He will also now eat chicken, but not from Applebees, we discovered yesterday. (Sorry, Applebees.) He's very fond of Bob Evans frozen foods sausage gravy with biscuits. These new meat choices mean good sources of protein, hooray, which has always been low in his blood work. They also mean cutting things up into teeny pieces due to his feeding issues, but that is so okay. We will be careful and celebrate the successes emerging from feeding therapy and IVIG. We think the IVIG has made him feel so much better and thus able to eat. I didn't fully appreciate how bad he must have been feeling until I saw him feeling better. What a hero to be going through all this. What a tremendous blessing to see him eating, talking more, growing.

This is his final full week before the next clinic visit, and still no need for going in or even calling. Wow. Methotrexate was last night, his last threat to counts before next week. He woke up with a rash but otherwise okay. His reflux has improved, and we no longer think he looks sick, so he has rebounded from whatever it was. To see him fight off a little illness is still downright awe inspiring. He hasn't been able to do that in so long.

Next Tues. is the biggie clinic visit - spinal tap, chemo, IVIG. He also has a follow-up with his developmental pediatrician Wed. Ryan also will be heading to a doctor - his plantars wart is rapidly multiplying. Brandon is fighting a cold. My kidney stone is still happy to stay in place, and that will be reassessed next week, too, I think. All of these things, however, are very doable. Having had such a seriously ill child puts a lot of other things in proper perspective.

Thanks for checking in! God bless you!

Wednesday, March 8, 2006 3:01 PM CST

Hello! Hope this is a breezy, brief report today, and that my writer's fingers don't get carried away. Kyle is doing well. The only bad news is a rash and, yesterday and today, a bit of fatigue. I kept him home from school this AM so he'd have energy for his Wed. therapies. But he's eating really well - his best week ever! He now likes ham, turkey, and chicken patties cut up! At last, we have protein in the diet! Not sure if the fatigue is just the chemo catching up with him or if it's counts starting to drop, but so far, so good.

I met the developmental kindergarten teacher, and that program looks promising for Kyle. Case conference is in less than two weeks!

Since that's all our big news of the week, I'd like to take a moment to pay respects here to Dana Reeves, wife of Christopher, who died this week of lung cancer. I always admired her grace and strength as her husband's caregiver and then during her own illness. She was such a positive spirit. She once said, "Life isn't fair, and we should stop expecting it to be." Indeed. I also heard it said of her that she got strong because she had to. Yes. People sometimes tell me I'm strong, and I am repeatedly speechless about it. When you're faced with adversity, what choice do you really have? You get strong and move forward. Despite the difficulties, there is so much life to be lived, and God is not ready for you to kill your spirit here on earth until he's ready to take it to heaven. Dana Reeves was just such a great example of all that, and for that I thank her.

Hug your kids. Make a will. Live out loud. God bless you!

Thursday, March 2, 2006 10:35 PM CST

I'm a bit late in updating due to a blissfully uneventful week for Kyle. The play I directed that Brandon was in at church went really well, and kept us busy, too. Ryan is requesting prayers for a viral plantars wart on his foot that is not responding to treatment. I'm told I still have a small but pointy kidney stone, but it's leaving me alone for now. That's us in a nutshell. More Kyle details if you'd like:

Kyle finished prednisone Sunday, and this run of it made him emotional and gave him a transient and severe case of attention deficit disorder. He couldn't settle on any choice of anything for more than a few minutes at most oftentimes. This is the kind of behavior where other parents or even relatives wonder why you're not doing more to correct your child and make him get ahold of himself, when in reality he himself has no idea what he wants or why he feels the way he does and literally cannot make himself stop, regardless of any correction or encouragement. You just have to hang on tight and ride it out, neither babying nor berating. I'm glad to report the emotions are evening out and he can now settle into his choices normally again, so our monster was only temporary - til next prednisone pulse, anyway. He is eating pretty well and is generally happy. The worrier in me feels he looks a bit puny, pale and skinny, with dark circles under his eyes, but no obvious signs of illness or neutropenia as of now, so we press on fairly happily. I'll take a day at a time again, a philosophy that still comes in handy and probably will for the rest of this life. In other Kyle news, a conversation with the special ed director today was positive, with no doors closed to Kyle's kindergarten possibilities at this point. I'll be looking further into his options next week, and talking more to the school. The goal is that we can all reach some friendly agreement. Prayers that we can do so, in a way that most benefits Kyle, will be appreciated. The goal is to come to agreement by our case conference March 20.

Thanks for checking in. If you'd like to have a great time in Indy and benefit kids with Down syndrome and leukemia, check out the info about Kelly's Upside Down Ball March 10. Kelly's site has the info at www.caringbridge.org/in/kellbell. Have a blessed week!

Tuesday, February 21, 2006 2:36 PM CST

Hello! The sun is shining as we recover from a day of chemo and IVIG, not to mention a birthday extravaganza weekend for Ryan and the passing of a kidney stone resembling a small child from Mommy. All is actually excellent news.

Most importantly for this journal is that Kyle did indeed make it FOUR WEEKS (imagine fanfare trumpets here) between clinic appointments, with only one phone call inbetween. What's more, his counts are stable (gasp - I don't think the word stable has EVER been used to describe Kyle's counts before). His nurse practitioner said this is what maintenance is supposed to be like, so they hope it continues. (If so, it just took Kyle almost 19 months to get here, otherwise known as the scenic route.) The only bit of bad news is that his counts are too high (ANC 3200) and didn't dip to the "therapeutic level" desired (750 - 1500) with the small methotrexate increase of last month. So, we are upping his methotrexate another half tab, to 2.5 tabs per week. All other meds stay the same. Fiddling with methotrexate always is like rolling the dice with Kyle, but his IVIG transfusions do seem to have made him healthier and stronger, so perhaps he can handle it this time. Goals: stay healthy, keep leukemia away. Simple, but sometimes quite a trick to achieve. We debated a blood count in 2 weeks but decided that I would probably know if he needed one, and if not, to just try for the four weeks again. Next clinic day is March 21 and includes all of today plus a spinal tap.

Kyle's only problems this week have been some refluxy coughing last night, an off and on runny nose, and a propensity for crying his head off in the middle of restaurants during special occasions. We have been patiently dealing with the first two and rather impatiently dealing with the third. He is right now sleeping off the clinic day. The IVIG made him a bit flushed and edgy this time. Prednisone starts tonight, so we can expect the edgy part to continue for the next several days.

In other news, I passed a rather impressive looking kidney stone this morning, if I do say so myself, and then made it to clinic for chemo/IVIG only 15 minutes late, then came home this afternoon and met my work deadline. Where are my cape and tights? (On second thought, me in a superwoman getup is probably a worse mental picture than the stone itself, isn't it?) Many thanks for prayers said. I felt them even more than the stone. Not sure if the other one is still in there or not, but I sure do feel better. In other news, Ryan turned 10 to great fanfare, complete with laser tag, a couple of sleepovers, and a museum trip. This is much more than the normal birthday to-do, but it worked out, and heck, you only go from single to double digits once in your life. Brandon is awesome for reasons I can't go into in a public forum without offending his nearly teen sensibilities, but suffice it to say he's a very good guy. Brad is awaiting his turn for jury duty this week, and in such sweet spirit, too. ( ;

Blessings to you. Thanks to the Bosnia visitor to our guestbook and all others who stop in. Bless you!

Wednesday, February 15, 2006 8:11 AM CST

Kyle is in week three of this month's maintenance cycle, and still has not had to go into clinic! He's just 6 days from his next regular clinic day, which is just 6 days from our goal of a normal clinic-free maintenance month. Woo hoo. He also is eating better and has had ham, green beans, and biscuits and gravy with milk in the last week! Yesterday, at his preschool valentines party, he ate cake for the first time!! I started with just the frosting and then worked in more and more cake, and he ate a bunch! This is truly amazing progress and we thank God and pray it continues. His shiny poo problem of last week has cleared up, too, as has his cold. His only oddity at the moment (okay, other than the mega amounts of meds he takes daily and his gtube feeds and his multiple therapies a week) is a rash, but that's no biggie. He is happy and doing great overall. He also is talking more and informed me in perfect sentence structure, if not enunciation, that "I don't want to go to bed." Hallelujah.

All this from a child who spent all of last winter and this past November and December in a continuous state of illness, neutropenia, and times off treatment truly feels miraculous and more exciting than the best Olympic event. We do believe the monthly IVIG transfusions are doing wonderful things for him. His next clinic appt. for chemo, counts and IVIG is next Tuesday.

This all leaves Mommy some energy for the school front, as we are now entering discussions with the school district about the most appropriate placement for Kyle in kindergarten next year. We could use some prayers that the best option for Kyle is settled upon peaceably. In other family news, if you're interested, Brad got a major state science teaching award last week, Brandon starts confirmation at church, and Ryan should achieve his Webelo status/patch in Scouts next week, which I'm sure sounds foreign if you're not into scouting, but it is a big deal. The play I'm directing and Brandon is in goes up a week from Friday. My kidney stones are still in place but generally are behaving.

Thanks for checking in. How nice to be able to share good news. Six days to clinic and a month of "normal" maintenance treatment. Go Kyle!!

Tuesday, February 7, 2006 11:54 AM CST

Kyle is a shiny, happy boy in more ways than one. His chief weird thing of the week is very shiny soft diarrhea, which Brad thinks looks metallic but I know looks exactly like frosted brown eye shadow from the late 1970s. No doctor seems to have a clue what this represents, just that it's weird. The only person who has seen this is my friend Robbin, whose daughter Kelly is betrothed to Kyle. Kelly has DS and leukemia, too, and now isn't it nice to know they have this in common, too. Fascinating fodder for first date conversations. And a definite reason for a two-bathroom apartment after the wedding.

Since this and his off-and-on cold symptoms are both confusing, and since on top of that he seems to feel generally well, we're ignoring it all and moving on with life unless something more definitive comes up. To add to the adventure, I have two (yes, two) kidneys stones camping out in my ureter, both petitioning for my attention but refusing to move. An Xray reveals that the lead stone is 7-8 mm in size, which my kindly urologist says I have a chance of passing that is "slim to none." (Med speak for a snowball's chance in H.) However, he thinks I should have a chance to prove my superhuman abilities and get a couple of weeks to pass it, as long as I'm not writhing in pain, and I tend to agree, having been through the awful surgery thing before. I really am doing pretty decently considering the bowling balls in my ureter are stuck in their lane. So I'm praying that they'll pass and that their timing will be good. (The play I'm directing opens in 2.5 weeks.)

Kyle's sedated ABR hearing test is scheduled for April 11. It has now been two weeks since we were in for chemo, so we are halfway to our elusive "go four weeks without visiting the clinic" goal. I'm thankful that he's doing decently despite the weird stuff covered above. He seems to feel better and is beginning to eat more again. Thanks much for any prayers said.

I'd best quit this thoroughly disgusting review of Kyle's and my bodily functions before I get into the kids or, heaven forbid, Brad's. (I hear laughter from anyone who knows Brad very well.) Thank you for hanging in there if you've made it this far, and have a great week. God bless you!

Wednesday, February 1, 2006 9:43 PM CST

Can you hear me now? Maybe you aren't familiar with that cell phone commercial catch phrase, but that's exactly what we were doing late today. Kyle saw his ENT to see if he still needed the sedated ABR procedure to test his hearing. This procedure has been rescheduled uncounted times for low counts, pneumonia, etc. It was always scheduled to see if Kyle had any hearing loss (which can be common in both Down syndrome and in kids who have had high-dose chemotherapy), because Kyle would never sit still for any of the traditional, unsedated tests. The good news is that Kyle stayed very still today and did a great job with those traditional hearing tests. The bad news is that the tests showed a hearing loss of some sort, particularly in the high tones. These tests, however, don't show a degree of loss, so to find out how bad the loss is and whether it will require hearing aids, he still needs the sedated ABR. His ENT joked that she was afraid to schedule it because it might make his counts drop - hah - but we're nevertheless shooting for the next available time, which won't be for a couple of months yet. So, we add this to the unfortunate list of crap he has to deal with (sorry, couldn't think of a more appropriate word) without worrying (much) about a bridge we haven't yet crossed. We certainly know he can hear voices and music, so he has a lot of functional hearing; just need to see if some aid would help him in his language and related abilities.

Kyle isn't quite as perky as he has been the last couple of weeks, unfortunately. His appetite is much decreased and he's very tired. He had some nausea and gagging today. No other signs of neutropenia, though, so we press on, hoping that he'll perk up again soon and make it through the med increase without much drama. He still is attending and loving preschool, thankfully.

We debuted the church's special needs policy and ministry at services on Sunday, with a special needs presentation by the pastor and me and a children's moment focused on special needs with the "I Can Be Your Friend" Veggie Tales song. We did a survey that uncovered 10 people with special needs and 40 (!) people volunteering to small jobs to help. It was so awesome, humbling, and I'm so grateful to God. It never would have happened, at least not in this way, without Kyle's presence in our lives. We're just getting started, but we hope to include a lot of people with special needs into the life of our church.

Please pray for my friend's son Robin, and another friend's son Keegan. Cancer sucks, but God is good. Bless you!

Tuesday, January 24, 2006 2:27 PM CST

Kyle's sleeping off his big clinic day, after vincristine and IVIG at clinic today. We have this down to about 4 hours now, which is not bad. He seems to be doing well. His little cold went away, which is the first time Kyle has fought off an illness without getting sicker in such a long time, I'm not even sure if he ever has. His oncologist says it's possible that it's due to the IVIG strengthening his immune response, and I told them I sure hope that's it, because that means we're actually doing something for him that helps him be stronger. His AGC is 2,100, though his white count is only 2,900, so he's all neutrophils, practically. This is high enough to warrant an increase in chemo, but his onc is being blessedly conservative, and only upping his methotrexate, and only by .5 tabs to 2 tabs. He gets those tonight, and I'll be praying over them. Methotrexate is the big blessing and curse of Kyle's therapy - a blessing because methotrexate is an important drug in fighting leukemia, and a curse because Kyle is extraordinarily sensitive to it. Our hope and prayer will be that it nudges Kyle's AGC numbers down to where they ought to be without crashing him into neutropenia and causing him to get sick again.

The milk boycott week is nearing an end, with no apparent effect on Kyle's GI issues. Despite his increased food intake (blessing), he seems to be pooping it out and has even lost a tiny bit of weight (curse). Kyle's NP today pointed out that Kyle probably will have malabsorption problems for a while as he begins to eat more, since he's been on a liquid and pureed diet for pretty much forever, and that we ought to give his GI system a few months to build before we run hysterically into multiple tests, unless he starts losing weight. This made a lot of sense to me, and made me feel calm, which is a precious and rare commodity. However, I'll of course run it past his developmental pediatrician before we decide what to do or to skip next.

We've gone a whole four-week cycle now with Kyle doing pretty well count-wise and health-wise. Last month, we had a mid-month check of counts; this month, we're trying to get through an entire four weeks without a clinic visit. Though this is supposed to be the norm for maintenance, we have accomplished it only one or two other times in 18 months. It's a great goal, though, and we're going for it. If Kyle has another good month despite the tiny med increase, that would be so awesome; maybe even a trend! Your prayers will be appreciated. Meanwhile, he has an orthotics adjustment tomorrow and an ENT/hearing appointment next Monday, wrapping up those extra appointments we've been putting off.

Thanks for hanging in there through this not so exciting update. Thanks for your continued prayers for Kyle, and please know that despite the challenges, he's doing better than he has in a long time, praise God.

Wednesday, January 18, 2006 3:36 PM CST

Hi! I found out Caringbridge will split the guestbook, putting old messages in a separate section, so I had them do that to Kyle's site. This should help you get on the guestbook much, much more quickly if/when you want to leave a message.

Now, on to Kyle. He is continuing to do very well. Some concerns, but mostly good news. He's eating fabulously, not the tough stuff, but much more than ever. He's made it through a whole week without a need to call the clinic and is usually pretty perky! We continue to feel blessed. On the less cheery side, he's fighting a small cold and is a bit more tired, but at least he's able to fight it! So we hope this doesn't mean his counts are dropping, but we'll find out next Tuesday, when he gets vincristine, IVIG, and counts.

Today, Kyle was seen at St. Vincent's Down Syndrome Clinic. He goes there about annually, or more often if there's a reason. There, he's evaluated by three therapists, an audiologist, a dietitian, and a developmental pediatrician. A chaplain and a genetics counselor also stop by to see if we need anything. The chaplain (who incidentally I like very much) made the astute observation that I look tired. I think that's kind of like telling the Statue of Liberty in the middle of January that she looks cold. Oh well, all in all, it went well, but we did discuss a new minor concern. I have been wondering a bit about Kyle's newly frequent BMs and gas, and his hair thinning, since these have popped up more definitely since he started eating more, and since there's still some question about celiac disease. The pediatrician agreed that he shows some signs of that or other malabsorption disorder, so we are going to try to take Kyle off milk and milk products for a week to see if he improves, which might mean he's lactose intolerant. (This will be such fun, given Kyle's love of yogurt and pudding.) If that doesn't work, we may do more testing, but the dr. thinks that a celiac blood test would show nothing since he's getting IVIG transfusions, and the only definitive way to diagnose it is via an invasive endoscopy, under general anesthesia, which we all agree is something we don't want to do now. So, we'll tinker with his diet for now and go back to see that particular doctor toward the end of March, when we'll discuss how he is eating, growing, pooping, etc. I'm to email the dr. on the results of the milk boycott after a week.

I am sure the above information was less than exciting, but it's Kyle's most recent news. Not great, but not bad, in the scheme of things relative to leukemia. I'm sure at some point in his life he may object to me discussing his poop online, but for now, we're safe.

Thanks for checking in. I'll be sure to update more after next Tuesday's big clinic day, when I can report on chemo, IVIG and the Epic Weeklong Milk Boycott. Got milk? Don't give it to Kyle. (Sorry, American Dairy Association.)

Bless you!

Wednesday, January 11, 2006 9:28 PM CST

Sorry I'm a bit late, but the old adage of "no news is good news" is thankfully true this time! Kyle's counts this week were great, with an anc of 1320. The "ideal" anc in maintenance therapy is 750 - 1500, so we're doing the happy dance here and not changing a thing in his meds. This is down a bit from last check, so the teensy up in meds actually did make a hit, but not too much. He'll have had 2 more doses of methotrexate by his next count on the 24th, so by then we should have a much better sense of if this is "the" dose for a while. (I know, after 17 months of maintenance, you would think I'd give up on finding "the" dose, but hope springs eternal.) Meanwhile, Kyle is pretty perky, funny and feeling much better in general. I'm hoping this means the IVIG is helping now and that it's a real turn for the better. After so many ups and downs, I usually don't indulge in hoping for anything past a good day, but there it is.

Now that he's on a good run, I'm even going so far as trying to schedule some other appointments for him, always a risky venture when you've got the king of the count rollercoaster on your hands. Not easy with my currently demanding workload, either, but we'll see. He needs his orthotics (foot braces) evaluated, a dental appt., an appointment for a hearing/ear eval, and a Down syndrome clinic appt. Those, the 1/24 chemo and IVIG, and his regular meds should eat up our deductible nicely. Tomorrow after meetings I'll be on the phone asking our lovely insurance company why Kyle's Prevacid now costs $95 per month instead of $45. Joy, joy.

If you read my letter to the editor last week, an update: it was published in this past Sunday's Indianapolis Star as one of their reader editorials called "My View." It should be at this link for a week, probably thru Sat., but I'm not sure:
http://www.indystar.com/apps/pbcs.dll/article?AID=/20060108/OPINION01/601080393/-1/ARCHIVE

God is awesome, and so are you for continuing to check up on and pray for our dear little boy. Bless you!

Wednesday, January 4, 2006 2:15 PM CST

I am happy to bring little news to this week's report. Kyle is feeling well, and just finished prednisone, so his counts haven't had a chance to dive, anyway. He had his upped methotrexate last night and has restarted school this week, went to his 3-hour stint at therapy today, and still seems happy and is looking pretty well. Praises! We'll see how the next few days go now that he's off the prednisone and get counts next Tuesday.

So, perhaps I can give a little attention to Down syndrome instead of leukemia today. I don't talk too much here about Kyle's Down syndrome; it's just a part of him, and really not the big deal. (Have I mentioned how cancer puts things into perspective?) We actually are kind of cheerleaders for people with special needs, are active in the Indiana Down Syndrome Foundation, etc. So I read a column in the newspaper yesterday about how great new prenatal tests for Down syndrome are since it will let women having babies with the "serious abnormality" of Down syndrome abort earlier, and it bothered me. I don't have a thing against prenatal testing; Kyle was prenatally diagnosed. I do have a thing against prenatal diagnosis with no accompanying information provided about life with Down syndrome. So I wrote the following letter to the editor of the Indianapolis Star, where the New York Times column appeared locally. They called today, so I think they plan on using it. If you have the time, read it; it explains a lot about Kyle's Down syndrome and about his mother's passions. If not, that's okay. Just take this as a slow news day; I'll post more next Tuesday when we get Kyle's counts back.

To the Editor:

As someone who has been through a prenatal diagnosis of Down syndrome, I read with interest and some concern the New York Times� Jane Brody column, �New procedures put women�s minds at ease,� reprinted in the January 3 issue of the Indianapolis Star�s Healthy Living section. Ms. Brody reports on newly available and upcoming prenatal tests that can provide a diagnosis of Down syndrome even earlier in pregnancy. Ms. Brody calls these tests �exciting findings� for women who would consider aborting a fetus with Down syndrome, which Ms. Brody refers to as a �serious abnormality.�

I am not at all against prenatal diagnostic procedures. Yet I feel I must address this column�s faulty platform: one, that Down syndrome is a �serious abnormality,� and two, that a prenatal diagnosis is the only piece of information needed to make an informed decision about terminating a previously wanted pregnancy.

Down syndrome, or Trisomy 21, is a genetic condition in which the affected individual receives an extra portion of chromosome 21. It affects one in about every 800 to 1,000 live births. People with Down syndrome can have several or just a few of a number of physical and intellectual differences, such as short stature, almond-shaped eyes, correctable heart defects, and mild to moderate intellectual disabilities. Like most of us, they find some things easier to do than others. They have widely varying interests, diverse strengths, and abundant joys. Like the rest of society, some of them achieve remarkable things; some live quiet but satisfying lives. Now that schools and some workplaces are learning of their considerable strengths, these individuals are achieving more and more, with many adults with Down syndrome working and living fulfilling lives, and even attending college and marrying. They are, without exception, important and much-loved members of many families� lives. So no, Down syndrome is not at all a �serious abnormality.�

All of those are simple truths, but these realities are rarely understood by someone facing a new prenatal diagnosis. I understand why a large majority of parents facing a prenatal diagnosis of Down syndrome choose abortion � the diagnosis, in isolation, is unspeakably hard. That is why a prenatal diagnosis of Down syndrome, without information and family contacts to help parents learn more about the condition, is woefully inadequate. After our son's diagnosis, my husband and I chose to research Down syndrome and met with families who had children with Down syndrome. In the information, we found hope. In the parents of kids with Down syndrome, even those facing medical problems, we found joy and a rare perspective on what�s really important in life. With this information at hand, we could make a truly informed decision. I believe every parent should be respected enough to be given accurate information about the condition their baby is bringing into the world, as well as names of organizations, such as the Indiana Down Syndrome Foundation (www.indianadsf.org), that can provide them with information about other families and community resources available to them.

As for us, our son Kyle has brought his parents and his brothers more joy than pain, more laughter than tears, and more strength than weakness. Now, six years later, I feel nothing but grateful for his presence in my life. I hope that other parents facing prenatal diagnosis of any condition will do themselves the favor of exploring what life might be like for their baby and themselves. The information just might surprise them, and they just might find that a �serious abnormality� is not so serious after all, and could even become a window to an even better life.

Friday, December 30, 2005 1:30 PM CST

Hope everyone had a blessed Christmas! I was so grateful sitting in Christmas Eve services, that Kyle was able to be there, counts were okay, and he was feeling well. Trips to relatives went off fine. Praises to God. Oh, what blessings we used to take for granted!

This means Kyle's teeny tiny chemo dose did nothing to harm him. On Thursday 12/29, he had a big day, with spinal tap, vincristine and lp methotrexate, and IVIG transfusions. He handled them well. His counts are good, with an ANC around 2500, still a bit too high but lower than his off chemo count. So, we've returned to daily half tabs of 6mp chemo, and upped his weekly methotrexate from 1 tab to 1.5. His oncologist said that half a tiny methotrexate pill should not make any difference, it's such a small dose, but that history has shown us that it apparently does make a difference for Kyle. We'll recheck counts in 2 weeks. His NP suspected last month's awful weeks of illness could have been aseptic (viral) meningitis, but we won't know for sure. He's on ibuprofen for a day following his IVIG, to try to prevent the reaction of last month. So far, he's doing well, though he's tired, pale and has huge dark rings under his eyes. However, if you had had a spinal tap and hours of chemo and transfusions yesterday, you might be a little under the weather, too, so we'll see how the next few days go. Sometimes we overlook how much these little cancer kiddos go through, because they really go through so much with nary a complaint. Adults could certainly take a lesson from them.

Well, lots to do, so I'm off to do it. More next week, probably. Thanks for checking in, and have a wonderful new year!

Tuesday, December 20, 2005 3:06 PM CST

Well, after weeks of illness and worry, we have found the trick for keeping Kyle well: stop chemo. Oh, if only it were that simple. Seriously, Kyle has had his best week in a long time, particularly the last few days, with new energy, etc. He went off chemo last Tuesday, and his ANC is now 2,001. We are plagued, however, by the knowledge that stopping treatment now would be like sending an engraved invitation to Mr. Leukemia to return, so Kyle is back on chemo starting tonight, at half his previous dose. I think this puts him on something like a 20 percent dose, which is teeny, and he has strict instructions to stay well through Christmas. We hope he obeys. We are again on the hunt for the perfect maintenance dose for Kyle, not too much and not too little, but it is an elusive thing and still unclear 16 months into maintenance.

Next Thursday, after Christmas, Kyle will have a big day, with full counts, chemo, spinal tap, and IVIG (immunoglobulin transfusions.) It was just after all that last time that the sickies began, so we hope the next month's cycle is less eventful. Meanwhile, I'm thankful Kyle's ANC is up for now, more able to fight the germs that have invaded his brother now. Brandon is sick today with fever and cough for the second time in a little over three weeks. Last time it was just 24 hours; I'm hoping for the same. If he gets sick one more time in short order, I'll be hauling the poor kid in asking the bewildered pediatrician for a CBC.

As for us, we're hoping for a peaceful and healthy Christmas, and we pray you'll enjoy the same. Kyle so enjoyed the cards from so many; thank you. Not so long ago, God saved all creation with a little baby, born to a previously unwed teenage mother, who survived a barnyard birth and a complicated assasination plot before he could string a sentence together. If that doesn't convince us that God can help us overcome even the most daunting of obstacles, I'm not sure what could. Here's hoping your Christmas and New Year brings hope, love and joy.

Tuesday, December 13, 2005 2:37 PM CST

Happy birthday to Kyle! He's a big 6-year-old! Perhaps no one appreciates a birthday more than the parent of a child with a life-threatening illness. What a blessing to have your child hit a new year of life. What hope. Praise God. And many thanks to those of you who sent a card; he's been carrying them around and looking at them. Who knows; maybe he's reading them. He suddenly can name every letter of the alphabet by sight!

I haven't updated in a week, not because Kyle has been doing really well, but because he's had so many new and changing and mysterious symptoms cropping up daily, I didn't know what to say, and figured it would get boring, anyway. So, sorry, but this update will be long. His symptoms have ranged from low fever to vomiting to yellow diarrhea to abdominal bloating to fatigue and lethargy, but not all at the same time. He has begun to improve over the last couple of days, mainly with a bit more energy and with a renewed appetite, but he also then developed the bloating, bowel issues, and also a rattle when breathing. I threw the white flag and went into the clinic today. Since Kyle's initial leukemia diagnosis was preceded by a few weeks of illness, and since his platelets had begun to drop 2 weeks ago, I was kind of concerned about relapse, and so was the clinic staff. They ran complete counts and chemistries and did a thorough physical exam, feeling for liver and spleen, and said they were glad to find that those organs had no swelling, and then when the counts came back, that all was normal except for a low white count/neutropenia (White count 900, AGC 225).

This means good and bad news. The best and most excellent news is that we aren't looking at a relapse! The bad news is that Kyle again isn't tolerating his small dose of chemo, which is a concern in and of itself. His nurse practitioner and doctor explained that most kids on maintenance chemo have count fluctuations but handle it okay, and their parents never know. They think Kyle just doesn't have the normal strength and fortitude and so his body can't cope with the count fluctuations and he becomes symptomatic, i.e. starts feeling bad and gets sick. I asked if we should just try to continue chemo, and they said no, that if we did that with Kyle already struggling and neutropenic, that he could become very sick. I knew that, but just had to ask. They think, however, since he has monocytes, that he is starting to recover, and we're hoping that a week off chemo will be enough to be able to restart. There was much debate about his Septra antibiotic, which he takes Fri-Sat-Sun to prevent pneumocystis. The down side of this drug is that it suppresses count recovery, but with Kyle's current upper airway congestion, no one was comfortable taking him off it. The onc/NP decided to have us give it to him just Sat-Sun, thinking that will give his counts a better chance to recover while still protecting against that form of pneumonia at a vulnerable time.

What this continuing chemo intolerance issue means long-term for handling the rest of maintenance and for his risk of relapse is kind of a big unknown. Any time there's a big unknown, prayer is probably the best strategy, so Kyle can use your prayers for strength, healing and protection.

Nevertheless, he is having a swell birthday. The clinic staff made a big deal over him and gave him a present, and a group of high school French students came in delivering Build a Bear animals for the clinic kids, and Kyle got a cute monkey. He had a nice time yesterday and today lookig through all his cards. Tonight he'll blow out the candle on his ice cream (he doesn't eat cake) and open presents. We are so very blessed to be able to celebrate this birthday with our much-loved little boy. Thank you for your concern, and we hope you have a great day, too!

Tuesday, December 6, 2005 10:39 AM CST

An update from the rare Monday entry of yesterday. A virus has again hit Kyle, we believe. It can actually be good news to find out your child is "just" sick, as it eliminates more worrisome possibilities. Kyle's overwhelming fatigue persists, but is now accompanied by low and intermittent fever, reflux/night vomiting, cough, and just feeling yucky. Given that the cough has been here since Thanksgiving, and he had that diarrhea issue last week, we don't know if this is a new virus or the same one. He's out of school again, and the poor pumpkin feels just awful. He barely moves. This isn't a total answer to his fatigue, which could partly just be the two years of chemo catching up with him (which happens to some cancer patients), but the illness should explain why the fatigue got so much worse as of yesterday. We hope he can beat these repeated viruses and get well. So far, he's remaining on chemo, so that's a good thing, although I'll be approaching his Tuesday night methotrexate dose with a little trepidation.

Brandon is home sick today, too, though is faring much better than his little brother. Illness is so much simpler when you don't have cancer. It's so hard to communicate just what this all means to a kid with cancer. When he has a virus, it's not the blip on the screen it is for most kids, it wipes him out totally, is maddenly hard to get rid of, and poses a threat of hospitalization if the fever rises. When he's fatigued, he's not really tired like the rest of us, he's thoroughly debilitated and unable to enjoy life, play, or just be 5. I don't mean to whine, and I am ever so grateful that Kyle is still successfully fighting his cancer, but he still fights so much, and has so far to go.

Nevertheless, hope springs eternal, and we look for better news each day. And personally, I'm happy that my migraine is gone!! I'll repeat the Kyle birthday info here from yesterday. Thanks!
Next Tuesday, the 13th, is Kyle's birthday. He'll be six years old! He likes cards; he tends to carry them around with him. If you'd care to send him a birthday card, I'm sure he'd enjoy it. If you need the address, send us an email or leave a guestbook message, and I'll get it to you. Thanks for checking in. Please pray that the fatigue and the virus gets tired of hanging around this family and flies away fast! Bless you!

Monday, December 5, 2005 1:12 PM CST

I'm sitting here worrying about my fatigued child, trying to convince myself not to worry, fighting a migraine, and working to meet the deadlines of clients who have every right to expect me to work quickly and intelligently. Don't worry, clients; this is just a break to update and to wait for the migraine meds to kick in.

I think I've mentioned lately that Kyle has been so tired, and also that he had a mystery virus or something last week. I was hopeful that the diarrhea coming and going last week was a sign that he finally "got" whatever it was he was trying to "get," and that things were getting better. But he's still so tired and barely eating or drinking. Sometimes he'll try to eat, but lose his appetite after a couple bites and sips. Today, after he got home from preschool, he just sat, staring at some PBS cooking program that came on, barely responding to me. He didn't even want to sing or play row your boat, or other things he loves. I finally got him to say he wanted to eat, only to have him refuse the food and drink after a couple of tries. I called the preschool and talked to the aide, to see if he had a tiring day there, but she said that he was very droopy at school, wouldn't walk, gagged when they tried to give him food, etc. She said she was alarmed and took him to the nurse to evaluate his cough, but the nurse thinks the cough is in the throat, not the chest (and I agree). I called the clinic and talked to Deb, his wonderful nurse practitioner. Deb thinks he may just have a very stubborn virus and that he probably most needs a lot of rest, and to just keep him hydrated through his Gtube using pedialyte or gatorade, and let him get lots and lots of sleep. I asked her about school, because our philosophy is usually to let him live a normal life if he's not neutropenic, but she said that since he's been tired and kind of vaguely ill for a while, and is more tired now, to just keep him home and let him sleep a lot until he regains some energy. She said rest is an "often overlooked therapy."

I hope she's right about the virus, and that it is short-lived. I guess that's not a realistic wish, though, since this fatigue has already been encroaching and worsening for a while now. I just hope he gets better soon. It's hard to see your kiddo, who should be full of energy at his age, too tired to move a muscle or to play. And since fatigue itself is both a treatment side effect and a sign of leukemia, it's just hard not to worry in some way, shape or form. We cancer parents live with and manage worry every day, and usually function quite well without letting it overtake us, especially if we have faith in our sovereign Lord, but we have our moments. On the other side of the generations, my own mother is dealing with crippling fatigue right now, as well. No wonder I have a migraine!

Next Tuesday, the 13th, is Kyle's birthday. He'll be six years old! He likes cards; he tends to carry them around with him. If you'd care to send him a birthday card, I'm sure he'd enjoy it. If you need the address, send us an email or leave a guestbook message, and I'll get it to you. Thanks for checking in. Please pray that the fatigue gets tired of hanging around this family and flies away fast! Bless you!

Tuesday, November 29, 2005 1:54 PM CST

Friday update: Sigh, I thought I was done Thursday! Kyle has diarrhea again, but not as bad. School wore him out completely. Here's praying he feels good again soon!

Thursday update: After yesterday's update, I thought I should tell you that the sea of diarrhea has subsided and the fever is gone. Hooray! Kyle is now just back to dealing with the yucky cough. I think he'll go back to school Friday. The severe illness was so short-lived, I think it may have been IVIG-related, but we can't know for sure. But my one day at a time philosophy dictates that since that day is gone now, we move on and are grateful. Now if we can just get Mommy over this nasty cold before she gives it back to Kyle.... Thanks for your warm thoughts on this too-eventful week. Please pray for my ALL list friends; many are struggling with so much worse, like relapses.

Wednesday update: Hello. Tuesday's update is below. Just here to add news (right - never a good thing). Kyle is sick. I had one of those parent responsibility moments this morning of having to clean up an enormous amount of diarrhea that covered Kyle and his bed. Sorry so graphic. He also vomited some and has a low fever. We think it's viral and not an IVIG reaction, but can't be positive. His fever is hovering between 99 and 100 underarm, and if it gets to 101.5, we have to go in, at least temporarily. He obviously doesn't feel well. Prayers will be appreciated!

Tuesday: Hi! Thanks for checking in! Kyle is home from a successful first IVIG transfusion. He did really well, with no reactions, which none of us really expected, since Kyle usually manages to make things interesting. Once again, boring is a blessed thing! This transfusion is a blood plasma product that provides Kyle with immunoglobulins to boost his immune system. We hope it helps. As if to tell us that yes, he does need this, Kyle got sick over the last few days, with a red and streaky stoma first, which then cleared, and then a nasty but moist cough and viral symptoms. He is very, very tired and not feeling great, but the good news is that he is managing to fight these so far without fevers, hospitalizations, etc. His white count is 1,100; his hemoglobin 11.3, his platelets 143K, and his ANC 815. His ANC is just high enough to continue chemo as is, thankfully. I am unsure if these counts are on their way up or down due to the virus, but hey, we'll take it, and just hope and pray that Kyle continues to handle chemo.

The IVIG experience lasted about 3 1/2 hours, not bad, really. Kyle was very patient. If he manages to stay well, he doesn't have to go back to clinic for four whole weeks, which is after Christmas! It would be swell to have a holiday month with no illness, clinic visits, etc. That seems an awful lot to hope for, though, so we'll just take a day at a time. I am kind of concerned about how fatigued he is; I hope the IVIG might help him get better and get some energy back. Meanwhile, it looks like I may have to occupy myself with fighting the evil insurance company again, as they have sent Kyle's ultra-expensive IVIG treatments out for "external review" before deciding to pay for them. When our clinic person asked why they were doing an external review, their rep actually said that she wasn't sure, but they "always do that kind of thing on him." Argh. On the other hand, I suppose this means that rather than trying to deny coverage automatically, they now send it out for consideration, which I'm sure is a result of my kind of aggressive vigilance about his coverage issues. I guess we need prayers that the external reviewers will agree that IVIG is medically necessary for Kyle. No one is sure how they could come to any other conclusion, but we also have some pretty negative experiences in that regard with this company.

One exciting note: I learned Kyle's off treatment (OT) date is March 2007! That's a couple of months earlier than we previously thought. We're more than halfway there! Kyle is counting well and recognizing numbers, and now several letters, too. He can make some letter sounds, too. It's very cool. We're glad to count you among our friends. Thanks for being here, and bless you!

Tuesday, November 22, 2005 10:19 AM CST

Happy Thanksgiving! We're hoping Kyle gets through the holidays well. Though he had no med changes, he started getting a red and infected looking gtube stoma late last week, and that is always a sign of low counts. He's also been so, so tired and has a couple of rashes/spots. All this tells us he's likely got counts issues. But a chat today with Kyle's nurse practitioner, who had talked with Kyle's onc, led us to decide to do nothing (!), including no CBC to check his counts. They are worried that we keep treating him according to the paper (his counts) and yanking him off chemo because that's what the protocol and standard wisdom call for, which is true. We all think if we check, his counts will be down and he'll go off chemo again, and we're not sure that's absolutely necessary. Since we haven't changed any meds, they want to let him continue on chemo and not treat the red stoma with antibiotics, and see if his body can handle this on its own, knowing he'll be in next Tues. for counts, chemo and IVIG starting. I think that makes sense, but as his nure practitioner said, Kyle is so hard to figure out or predict, and it's not a very reassuring way to celebrate family holiday. We of course have instructions to call if he starts running a fever or if it gets a lot worse.

His oncologist believes this will all get better after Kyle gets the IVIG transfusions, which he starts next Tuesday. I asked the NP, somewhat sarcastically, if that's like turning on a light bulb (works immediately), and she laughed and said no, not at all, but he's an optimist. Actually, so am I, so I guess we'll just go with that.

So Kyle could use your prayers that he fights infection and illness now and that the IVIG goes well next week. As for the rest of us, we're looking forward to a break. Brandon has had hours upon hours of homework, and I've been typing for him to speed it up. (As a writer, I offer the cool Mom skill of being able to type at lightning speed.) I actually had a homework stress dream the other night, which I'm sure is completely inappropriate. Anyway, we'll all be thankful for some time off, and hope you have a happy Thanksgiving, too!

Tuesday, November 15, 2005 1:51 PM CST

Mark the calendar. Kyle's counts did exactly what they should have done. This happens even more rarely than a full moon in a lunar cycle, so it's worth noting. After his teeny methotrexate increase, his ANC dropped by way more than half to 1,450. This happens to be in exactly the ideal maintenance chemo range (750-1500), which is too low for the rest of us, but is a nice way to show the chemo is working but not beating the kid up too much. So, we leave his meds as is, sure that any more increases will send him careening downward, but hopeful that this will stick.

Decisions have been made about his too-low IgG (immune levels). After some debate, we have decided to transfuse IVIG (intravenous immunoglobulin) monthly through the winter and early spring. This was subject to debate because Kyle's repeated infections have not usually been so serious that he's hospitalized, so you could argue that he does not desperately need IVIG. However, his infections have forced him off chemo and out of school repeatedly. His oncologist is not too concerned about Kyle's low doses of chemo, because that dose is obviously high enough to keep his counts down and thus should work against the leukemia. But no one can assure us that his repeated spells off all chemo won't hurt him; it could make him more susceptible to the leukemia returning, but we can't know for sure. Since the IVIG transfusions should boost his immunity, keep him more well and keep him on chemo, we decided we must go for it. We hope he can stay off these transfusions during the summer, when he is typically more well.

IVIG, for those of you not in this world, are human blood plasma products full of immunoglobulins that can boost the recipient's immune response. Immunity levels can take a real beating during extended chemo, so after two years on chemo, I guess Kyle is due. The transfusion takes about 5 hours each month. Some kids get headaches or nausea after transfusion, but they give tylenol and benadryl to help prevent reactions. Most parents I know who have kindly shared their IVIG experiences with me report that it has made a world of difference for their kids. One mom said it was like watering a wilting flower. I hope that it can help Kyle not only stay well but have more energy. He still is frequently tired. So, please pray that all goes well and that it provides real help to Kyle. His first transfusion will be in two weeks.

I received an interesting message during Communion with Kyle recently. Kyle had his first communion, and he and I shared our cup of juice. This was an amazingly intimate experience, and the whole world just receded except for Kyle and me and the presence of Christ, and I got a clear message that "you just have to trust me." It was quite unexpected, as I frankly didn't approach the altar with any goal loftier than getting Kyle through the experience without knocking all the juice off the communion rail, so the whole thing took me quite by surprise, and was a little unsettling. I think I would have preferred, "relax, he'll be fine," but nevertheless, it's a privilege.

Hope you have an awesome week! I'll try to stick to Tuesday updates. Oh, brag time: Brandon, my 12-year-old, got first chair in the baritone section. You have to be a band geek to appreciate that, but it's a cool thing.

Tuesday, November 8, 2005 8:33 AM CST

Hello! We have news, despite the fact that Kyle does not have a clinic appointment or blood count this week. But we did get his IgG levels back, which are the immunoglobulin levels that show your overall immunity levels. Last year, Kyle was sick most of the winter but had IgG levels that were only borderline low. This year, Kyle's level is 428, and the normal level for his age and size is 592 to 1,700. That means the chemo has taken a further toll on his immunity and that we may have to transfuse IVIG, but that decision has not been made yet. I haven't heard from his oncologist, and probably won't until we have our next appointment. Doing IVIG is always a decision that weighs the cost, risks and inconvenience of the treatment vs. the risks of repeated infections and resultant off-chemo times. The transfusions, as I understand, take 6-8 hours once a month, and are wildly expensive, and carry some minor risk of allergic reaction. But I sure would be happy if Kyle could stay well more than a week or two at a time this winter and stay on chemo more often than not. So, we'll see and will share any news when we know.

The same day I learn this, I get notice from the school that a child in the school has a contagious viral skin rash that is especially problematic in people who are immunocompromised. Swell. So, I call the school nurse, and eventually learn that this child is not just in Kyle's school, but in the other morning preschool class and shares Kyle's bus and playground time. More swell. After various chats with the school nurse, the health department nurse, and the oncologist, we determined that this will "probably" be okay, since the spots are not active and what's there is covered by the boy's shirt, and the rash can only be spread by direct contact or shared surface contact (skin to skin, or skin to surface to skin). They've promised to do vigilant handwashing and keep the rash covered, though there's still a chance of infection on playground equipment, etc., but it's small. So we live with "probably" and "small risk" and move on.

Kyle finished his prednisone pulse with not too many issues this month, and we'll recheck his counts next Tuesday. Let's hope he stays well, but so far, so good. He is all smiles despite his litany of daily meds and feedings, and the rest of us continue to be inspired by him. Wishing you many smiles, too.

Tuesday, November 1, 2005 3:11 PM CST

Hi! First, check out the new photos (finally) in Kyle's photo album!

Kyle responded well to the Zithromax antibiotic for his sinus infection, which apparently remains in his system for 5 days after stopping. We won't know for sure if he's kicked the infection til next week, once the drug clears out. Sinus infections can be stubborn, but he's looking good now. His counts are steady despite restarting chemo, which is great news. Their steadiness is too high (ANC is 3,400), so we are again upping his weekly methotrexate dose to 2 pills instead of 1.5. This means he's on about a 40 percent dose of methotrexate and a 50 percent dose of 6MP. (These are the oral chemo drugs he gets.) His onc suspects that may be as much as he'll ever tolerate, but we'll see. His ANC crashed the last time he went to 2 methotrexate tabs, but we think that was due to his illness more than the meds, or the combination of the two. So, we are now officially hoping and praying that he stays well and that his meds do exactly the right job, and that he can stay on them. He got vincristine today and starts 5 days of prednisone tonight, always a joy (hah).

Other good news today: a visit to the dentist revealed Kyle does NOT have extra teeth coming out of his hard palate behind his front top teeth. We suspected that, because of the hard, whitish protrusions up there, but could never get a good look. It turns out it's just the palate, probably a bit whitish due to Kyle's low hemoglobin levels on treatment. So happy to be wrong about that. If we'd been right, he probably would have needed oral surgery. Since Kyle came along, I've probably said "I hope I'm wrong" more often than most people do in a lifetime. It's kind of a useful exercise in humility, actually.

Yesterday, Kyle trick or treated! He walked up houses' sidewalks from his wagon for the first time, holding his bag, and looking very cute in his tiger outfit. I think the costume is very appropriate, considering how Kyle has been fighting leukemia like a tiger for a full two years now. He even signed "thank you" a couple of times. He tired out after about 10 or 15 minutes, but it was still awesome to see. Brandon and Ryan, on the other hand, tore around the neighborhood for 90 minutes and hauled in enough candy to send us all into insulin shock.

Great news comes from North Carolina, where Baby Donovan has an acceptable level of remission to move forward with his cord blood transplant. Thanks for any prayers for these friends of ours.

Kyle was exposed to a girl in his preschool that later came down with chicken pox. We found out about the exposure too late to give Kyle any preventive meds, so we just wait it out. Since the girl left school before she broke out, it's probably fine. Kyle may have immunity from his vaccine, but apparently some kids on chemo lose that immunity, and chicken pox is really serious in kids with leukemia. Since the risk seems low, though, I am not too worried. This whole "I'll worry about it if it happens" philosophy is another handy byproduct of this whole journey.

I hope you can enjoy some of these lessons learned without the heartache attached. Life isn't generally that kind, though, so we all hold hands and stay together, and keep our eyes on God. Thanks for holding our hands in this journey.

Tuesday, October 25, 2005 5:08 PM CDT

Goodness, it's been quite a week for Kyle. The low counts (ANC of 306) last Tuesday was followed by more coughing, then an early morning three-hour run of vomiting and fever and looking/feeling awful Thursday morning. Just 3/10 of a degree from the magic admission fever of 101.5 when you're neutropenic, Kyle seemed destined for the hospital. After vomiting ran dry, though, he fell into an exhausted sleep, and woke up a few hours later fever-free and feeling much better. Go figure! Through the last several days, he's been doing fairly well, but the cough has gotten tighter and the nose gunk has gotten greener. Today, his ANC was much better, in fact, again too high - 3,800. His lovely nurse practitioner suspects all this count bouncing (5,800, then 300, then 3,800) are probably in reaction to this virus. We suspect the virus is now bacterial and in his sinuses, so he's on antibiotics for a sinus infection. However, he is back on chemo and able to return to school, all good news. Next week, we'll recheck counts at his regular monthly chemo visit. They also want to test his IgG, which is a blood test that shows how well your immune system is working. Last winter, Kyle was just borderline low. If you're too low, you can get tranfusions of IVIG (intravenous immunoglobulin) to boost your immunity. Since Kyle was just borderline low and he had mostly viral, not bacterial, illnesses, he didn't need it last year. But it's possible he will now. Not sure what to hope for on that, but we mostly just hope he'll be well. Count crashing from illness tends to kick him off chemo just as much as count crashing from med reactions, and no one is very comfortable with the amount of time he has spent off chemo. So we all just continue to do our best, and pray, of course.

That is a lot of medical mumbo jumbo, I know. Sorry. Kyle is still a shiny, happy kiddo most of the time. Even more shiny with snot dried all over his face. (Yum.) Every day with him is a gift. Really. He is Love. He's also really wanting my attention right now, and a busy night awaits, so off we go. Thanks for checking in.

Hi. It's Friday, and wanted to do a quick addition. First, please storm heaven with prayers for our friend, Baby Donovan. He's in North Carolina for a transplant and they fear he may have slipped out of remission, but will know more Monday. They're at www.caringbridge.org/in/babydonovan.

Second, happy halloween. I'd like to note that tonight (actually, the wee morning hours of after midnight) marks 2 years since Kyle's leukemia diagnosis. I took him into the ER after carving pumpkins, when we noticed the petechia all over him (under the skin blood spots). We're carving pumpkins again tonight but expect better luck! Kyle finished three days of school this week with no problems. His snot is better and no fever, but he has a nasty cough and wheeze. Overall, though, I think he can be a cute lion for Halloween, and we'll find out more Tuesday! Be safe and have fun this weekend!

Tuesday, October 18, 2005 3:13 PM CDT

Might as well sum it up with the nurse's quote today: "What are we going to do with that son of yours?" If you happened to read my last entry, you may recall that Kyle's ANC was a whopping 5,808, and that they upped his methotrexate just a teeny half pill (to 2 tablets), so his counts shouldn't crash. You may also recall me saying that we couldn't rely too heavily on shoulds and shouldn'ts with Kyle. Just to keep us on our toes, Kyle's ANC crashed to 308, an even drop of 5,500. Now he is neutropenic, more or less quarantined, and off meds again.

We're all bewildered and befuddled, etc. He does still have a cough, fatigue, and now quite a rash. This could be nothing, or perhaps a virus did the raise/crash counts cycle. With the cough and the counts, and the increasing frequency of sick buggies floating around this time of year, we've been advised to keep Kyle out of school until after counts are checked next Tuesday. I am letting him go get his orthotics (foot/ankle braces) checked tomorrow, though, cause his little tootsies are getting red and calloused and he really needs a new set. I'll probably go armed with my antibacterial wipes, always a good look. Some people obviously think we who love and care for people with cancer and neutropenia are freaking paranoid about germs. I'd like to ask them how many times their child ended up in a hospital for five days after first catching a cold. Personally, I've lost track. So I'll shield my kid and wield my cleaning supplies with confidence, thank you.

Today kicks off the kids' fall break, so the news of being quarantined is most unwelcome, but oh well. That is the way the ball bounces sometimes, and it could be much worse. Overall, Kyle is feeling well. We are especially excited for him that he now can not only count to 10, but he can recognize and name all his numbers from 1 to 10 in random order.

To sum it up, Kyle could use some prayers that this is just a blip in the road and that it won't turn into anything major. Baby D needs prayers now that his family is arriving at Duke for his cord blood transplant process. Lots of cancer kiddos could use some prayer, actually. I had a great time with some of them and their moms on Saturday, when five cancer moms and some kids got together to have lunch and send Baby D's mom off with well wishes. Seeing the spirit we all had and the determination with which various moms fended off hockey puck-sailing, tackle football-throwing, and smoking "patrons" of the arcade was inspiring. If cancer moms ruled the world, I suspect it would be filled with more compassion and less nonsense. Just a hunch.

Happy fall. God bless you! More next Tuesday, unless news arises before, and really, I hope not....

Thursday, October 13, 2005 1:36 PM CDT

I'm happy to report there's not much news. If you keep up, you know that one of the many lessons this journey has taught us is that boring can be a very good thing. Kyle is trotting around and talking more and more, enjoying preschool, and trying to be a normal kid, despite the continuing cough and some fatigue. His upped methotrexate dose just happened Tuesday, so we'll see how he reacts. Since his last ANC was an incredibly high 5,808, it shouldn't crash his counts too badly. (But then again, you know how reliable shoulds and shouldn'ts are with Kyle.) His high counts have made him feel better, I think, but they also open the window far too wide for the errant leukemia cells, so we do need to move it down.

Kyle's dad Brad celebrated his birthday Saturday. Ryan is joining a math pentathalon team and is working very hard to sell popcorn for Cub Scouts. Brandon was just invited to join the 8th grade jazz band as a 7th grader. He's one of only four 7th graders to be asked to join. I'm feeling very proud of my guys. Our church opened its renovated sanctuary and we loved the Erin O'Donnell concert there, especially Kyle, despite the disapproving looks about Kyle's teeth grinding that sent Kyle and me scurrying all over the sanctuary trying to find a place where we wouldn't disturb anyone. I wanted to invite these people to see Christ in Kyle, and to hear in his noise the noises made upon the cross, but I didn't. After all, grinding is pretty annoying if you don't have the right set of ears on. On a better (and related) note, we've had very positive reception about starting a special needs ministry at our church, and I'm psyched.

Kyle goes Tuesday 10/18 for a blood count and a flu shot. What a way to kick off fall break. Oh, if anyone read my prayer request for Baby Donovan and participated, thank you. Baby D has reached remission again and can now have his transplant! Praise God. This 10-month-old still will need prayers, but what a major step.

Thanks for checking on Kyle, and thank you for your prayers. We feel them, and they work.

Wednesday, October 5, 2005 11:47 PM CDT

Hi! If you missed my last message, posted Friday, check the journal history. It's heartfelt, and kind of funny at the end, and I am currently too tired to be either. I had a special needs ministry meeting at church, where I'm starting that kind of ministry, and the other attendees were all either other parents of kids with special needs or a special ed teacher. We mused about what to name the committee, and I suggested "weary but willing."

Kyle's appointment Tuesday was kind of hard for him. The spinal tap seemed to bother him a lot, and he slept hard for most of the afternoon afterward. But it was all clear, thankfully (no CNS leukemia), and overall, it was a positive visit. His fungus seems to be clearing and can be treated now with just topical stuff. The red stoma is puzzling to all of us; another one of those "I just don't know" moments from Kyle's wonderful care team. I appreciate their honesty. It's not from low counts; in fact, his ANC is an entirely too-high 5,808. Normally, this would prompt a big upping of chemo meds, but Kyle's history has taught us that knee-jerk reactions bring crashing counts and neutropenia. So, we are only raising the methotrexate dose by one-half pill, starting next week, and checking again in two weeks. I'm very glad. Kyle has a cough and a bit of a runny nose, so the spiking white count/anc could be from the start of a virus. This has happened before, and it usually drops a few days later.

Other than the little virus, he's doing well. He had a great day in therapy and is doing well in preschool. His main battle this week is mood swings from prednisone. He was inconsolable tonight, and I asked him what he wanted. He just looked at me and cried and was so deeply sad. He had no idea what he wanted. Think PMS times 12. (If you're a man, this may mean nothing to you, although if you're married, perhaps it does....)Pred continues through Sunday, after which it takes a few days to recover.

Thanks for checking on Kyle. We hope you are having a good week. If Kyle could hug you, he would.

Saturday, October 1, 2005 11:30 PM CDT

It's been a week, and wanted to check in. Tomorrow is the Light the Night walk, to honor and help those with leukemia and lymphoma. I sit here tonight near a sleeping child who is surviving leukemia even while still in treatment, fighting every step of the way, taking every complication and setback with a kind of unquestioning acceptance, and enjoying every day that's good with unbridled joy and unabashed hugs and love. I think perhaps we all work and hope to be like that, to be enough like Christ to accept what we can't change, enjoy the gifts we're given, and to love without limits. I spend a lot of time each day caring for someone who has taught me more about God and love and courage than anyone or anything else ever could have, and it is an unquestionable privilege. I suspect many parents of kids with cancer and other special needs feel much the same. So on the night before Light the Night, I honor them and will say a prayer for them. I invite you to say a prayer, too, especially for the family of Clare Schmidt (www.caringbridge.org/md/clareschmidt). She is a little girl who is one of "our" kids on my online parent group for parents of kids with ALL (acute lymphoblastic leukemia), and she lost her fight Friday, or as we all say, earned her wings. I am at a loss of what to say about that. I read somewhere that if you lose a parent, you're an orphan, and if you lose a spouse, you're a widow or widower, but if you lose a child, there's no word for that. It's just too much for the English language to handle. Just pray for little Clare's mom, dad and sister, please.

As for Kyle, he finished his fluconazole (fungus medicine) and is still showing some spots here and there and redness around his stoma, which we're not sure about - if it's fungal or bacterial, the second of which would indicate his counts are low. However, if his counts aren't low and it's fungal, we're stuck with an unresponsive fungal situation, which is worrisome to me. I hope it's just worrisome because I don't have enough info. At least that much should be cleared up Tuesday, during Kyle's next appointment. It's a biggie, with a spinal tap, which he now gets every three months. I'll be anxious to see his counts and hear what they have to say about the fungus. In the meantime, though, Kyle is happy and feeling well, and talking more all the time. When the phone rings, he calls out, "I'll get it," even though he's a ways from answering the phone yet. Fun. If I had caller ID, I'd let him answer the telemarketing calls, and just listen in to hear how the person on the other end handles it.

My latest fundraising effort is for my son Ryan's Cub Scouts, or more selfishly, his camp fees next year, which can be paid through his sale of boy scout popcorn, which honestly is the best popcorn ever. If you're in our area and want some, please let us know. If you're not in our area, find a scout and order some. It's great. I'm no longer a soccer mom but am apparently a scout mom. Just don't make me wear the uniforms. I don't care who you are, adult women do not look good in scout shirts (pockets on both breasts) with dress shorts and khaki socks. I will make tremendous sacrifices for my children, but God help me, I will NOT GO THERE.

Hugs, thanks and prayers for you, too. I'll check in with news of Kyle late Tues. or Wednesday.

Sunday, September 25, 2005 10:58 PM CDT

We've had an eventful few days, in lots of ways. First, thanks to any and all who said a prayer, gave a donation, or walked with us at the Buddy Walk Saturday! It was awesome, and the most $ and walkers ever. There were 32 people on Kyle's team, all "Kyle's Buddies." Woo hoo. I'll post some photos soon. Just one more walk left - the Light the Night walk this Sunday Oct. 2. I don't think I'll be taking Kyle; it's very crowded, and his counts are questionable. But I may go on my own or with a friend; and I thank all who have donated to this important event, too. Donations for that walk/the leukemia society can still be made at http://www.active.com/donations/fundraise_public.cfm?key=ltnKyleDeHoff .

Medically, we have had a new kind of worry. Kyle's red spots in his diaper area were brighter Friday, and the red stoma worse, too. We got a phone prescription for oral fluconazole Friday. This is an antifungal. Fungal infections can happen in immunocompromised kids, especially after antibiotics. I'm surprised this number hadn't come up before. We have been worried, as more rash-type spots showed up on Kyle's face, neck and arms on Saturday, but as of Sunday, those seem to be improving. He still isn't eating well. We think the fluconazole may be working, though he has had 8 (!) BMs today. Since he's happy, however, and those rashes seem to be getting better rather than worse, I think we can just keep cruising. This outlook is a little tenuous and subject to sudden change, but alas, we've gotten kind of used to that situation.

The older kids survived ISTEP this past week, as did Brad on the teacher side. I personally like ISTEP week - no homework to pay attention to. Today, we were the grateful beneficiary of 3 of the Colts tickets donated to the cancer center.

I'm too tired to be witty so will be merciful and sign off before diving into minutia. Prayers for Kyle's most recent troubles to be not serious and gone soon will be appreciated. Thanks so much for your support!

Thursday, September 22, 2005 11:25 PM CDT

Hello. Wonder where we went to? The whirlwind trips to Kville for mom's surgery and clients who really needed attention after Kyle's and my mom's hospitalizations all kept me from updating this week. So, you can guess the good news: things are going fairly well for Kyle! I always seem to make it here if things are not so good.

Kyle's counts Tuesday were great; too great for a kid on maintenance leukemia chemo. His ANC of 2,600 is far above the max of 1,500, but because it's Kyle, we're doing NOTHING. No med increases until we see it maintain or rise more in two weeks. I think this is extremely wise, since he crashed on just one itty bitty methotrexate pill more, two times in a row now that we've tried it. I'm thinking that maybe if we do up his dose, it should only be by half an itty bitty pill at first. But then, I'm not the oncologist, am I?

One bit of bad news is that since he went off Keflex Tuesday, Kyle's stoma is already getting a bit more red. He also has developed red bumps on his scrotum. He seems a bit young for jock itch, but who knows. I certainly don't, as it is quite literally not my department, and Daddy isn't sure, either. You would think with a house full of boys, we'd be better versed in this stuff. Sadly, since we have all these skin infection worries with Kyle, I probably need to call the clinic Friday, just three days after being there, blowing all hopes of two whole weeks with no need for medical phone calls. Oh well, I'm sure they miss us. Hah.

Not much of anything will keep us out of commission though, until after the weekend. The Buddy Walk is this Saturday, and it looks like we'll have 25 team members for Kyle's Buddies, and meet our team fundraising goal! Woo hoo! Thanks to everyone! The invitation to walk with us is still open.

Thanks for checking in. I'll update again next week to report on the Buddy Walk and the scrotal issue. (For Pete's sake, I think I've lost all sense of decorum in this cancer journey. Or maybe it's just a Mom thing.) While you're saying prayers for Kyle, please add a few for Baby Donovan, Clare and Kaden, who especially need them right now, and all the other kids with cancer. And this Buddy Walk weekend, join me in a prayer of praise for God's creation of people with Down syndrome, and the unique and wonderful gifts they offer the world. Thanks!

Friday, September 16, 2005 8:57 AM CDT

I've been out of commission a bit. My mom had peripheral vascular angioplasty/stent on a leg Wed, had to stay over til Thurs., and will have the other leg done Monday. So I'm back and forth between here and there, and will be back in time for Kyle's clinic visit for counts on Tuesday. I think I'm in what they call the sandwich generation, which makes me the peanut butter. It's okay, though. I'm glad to do it. My mom, sister and I had many laughs while waiting for them to invent a new procedure before taking her into surgery. (At least I think that's what they must have been doing in the 8! hours she waited.) When they both visited me when Kyle was first diagnosed, we also had many laughs in his hospital room. People must think we're delirious. Little do they know, we are always like that. My odd sense of humor always feels at home when in the company of my mom and sister, both strong and irreverently funny women.

As for Kyle, he is full of mostly good news. No jaunts to the clinic have been necessary. His continuing redness around his Gtube stoma has kept him on Keflex for cellultis and cream for potential yeast. It still is not normal, but looking better. Since all that is suppressing the stoma barometer for his counts, I'm not sure what Tuesday's counts will reveal. I'll be anxious to find out. But he's happy and relatively well, though still a bit tired out. My jaunts to Kville kept him out of therapy this week, so he has had a full week of school. He's happy. As a result, so am I.

Hello to Jo, Hannah and Rebecca. If you haven't been in the guestbook, go in there and check out this cutie Hannah who signed in. Now Kyle has a cute Bristish girlfriend. He is betrothed to another cutie, though - Kelly, who now lives in Wisconsin. You can see her at www.caringbridge.org/in/kellbell. She also has had some overtures from Syndney, a fellow Hoosier, whom you can see at www.caringbridge.org/in/sydneylynne. I never knew before having a child with Down syndrome that people with DS are really the cutest people alive. Kyle is cuter than the rest of us put together, and these junior chicks are every bit as adorable -- though I was recently informed that my junior-high son is considered a "hottie" at his school. (As if I didn't have enough to worry about....)

Speaking of Down syndrome, please join us at the Sept. 24 Buddy Walk. Really. I have recruited at least 12 people to join us and I'm fishing for more. I am counting on a lovely day (though it's kind of fun even in the rain) and really want to share this great day. I have never felt such love, joy and celebration in a single event as I do year after year at the Buddy Walk. People with Down syndrome and even their families are really just uncommonly wonderful and capable of embracing anyone and everyone with unfettered joy. Come. Give a buck, or nothing. Money isn't required. You'll be glad you did, and we'll be even more glad. However, if you'd like to give, you can, and if you can't come, you can give at www.indiana-dsf.org. Click on donate to a team, then find "Kyle's Buddies" in the drop-down menu. Many, many thanks to those of you who have already given to this or the leukemia society. Ways to give to both are in the journal history in my Sept. 8 entry.

Have a great weekend, and I'll update again after Tuesday's counts.

Thursday, September 8, 2005 11:10 PM CDT

Hello! New journal entry, just to update, but mostly because I at LAST have the info if you would like to donate to the Indiana Down Syndrome Foundation or the Leukemia and Lymphoma Society, in honor of Kyle's Buddy Walk 9/24 (walk with us if you're in town, please - it's SO fun!) and in honor of Kyle for the LLS' Light the Night Walk. The donation info is at the bottom of this update, where it will remain through September. If you'd like to donate, it would be great if you could do so by 9/19ish. Please don't feel obligated, and keep those hurricane survivors at the top of your charity list, too.

As for Kyle, he's back in school. Today he had a visit to the nurse because his Gtube stoma was leaking. She invented this rather elaborate gauze/tape thingy that went all around the mickey button, which was perfectly dry when he got home and did no good at all. Nice of her to try, though. It was just a temporary spew. (Lovely, I know.) He wore out before school was over and he's very tired. He has dark circles under his eyes and looks thin. I'm not particularly fond of this POW look he gets sometimes when he's not up to snuff. I upped his Gtube feeds last night, which probably explains the spewing at school. Some of my ideas are apparently less brilliant than others. (hah)

His skin around the stoma is still red, and antibiotics run out after Friday, so I suppose I'll be calling the clinic Friday to find out if he should have a refill, or what. I've been applying the antifungal cream with equally invisible results. He has no fevers, and his counts wouldn't tell us much since he's on prednisone, which elevates counts. I suspect they won't be certain what's wrong, through no fault of their own. If you're around medicine very long, you have to face the maddening fact that much of it is educated guesswork. If everyone knew this, however, I suspect there would be fewer lawsuits and more information-seeking patients.

Kyle's 5-day prednisone pulse has wildly varying effects from month to month. I could run a wager business on it. This month, apparently, is the sad effect, as Kyle is currently prone to sadness and sobbing, which is very unlike him. I much prefer the hyper effect, but I don't think he's feeling well enough for that right now. He still, though, is giving the most awesome hugs known to man.

Here's how to donate to Kyle's worthy causes:

To donate to the Indiana Down Syndrome Foundation on behalf of �Kyle�s Buddies,� you can donate online by going directly to Kyle�s donation site, http://www.indianadsf.org/buddywalk.cfm?teamID=52

To donate to the Leukemia and Lymphoma Society on behalf of Kyle�s Team, you can donate online by going to Kyle�s donation site, http://www.active.com/donations/fundraise_public.cfm?key=ltnKyleDeHoff

Thanks. We always value the chance to use our situations with Kyle to help the greater good. These organizations do us a lot of good, too. They are a blessing - just like you!

Tuesday, September 6, 2005 4:01 PM CDT

Hello. Kyle survived the weekend well. We remained worried as his skin around the Gtube stoma has taken on various stages of redness, swelling, bleeding and, conversely, looking better. He is still fatigued. His GI problems have improved, and today's counts show improvement, too. His hemoglobin is up to 10.6 and his AGC is up to 1,710. This is very good news. However, because he's still showing signs of cellulitis, and his oncologist thinks it looks like a staph infection, he remains on Keflex. His NP thinks the skin problems could be yeast-related, so we're also apply antifungal stuff to it. I kind of hope she's right; seems less threatening and more easily treatable.

Since his counts are up, he can go back to preschool and therapies tomorrow, and he can restart chemo. He starts back on 1/2 tab 6MP daily, 5 days of prednisone, and 1 1/2 tabs of methotrexate weekly. He had vincristine today. The most worrisome part of all that is the methotrexate, but it's at a dose he's been able to tolerate before. I just feel a little cautious since his counts aren't sky high and his stoma still looks fragile. Thrusting him into his busy world after filling him with the benevolent poisons so soon after he was hospitalized is scary, frankly. But it's part of the job. He can't live in a bubble.

We really appreciate your prayers, and I think Kyle could still really use them. We are so grateful for his progress, but will feel better if he can get through a couple of weeks with continuing improvement. He'll have counts rechecked in two weeks. It would be swell if life can go on well and smoothly between now and then.

As for the hurricane, the red cross is still top of the heap, but I also know www.cancerwarriors.org is helping families who have kids with cancer in that area. I also am way behind on posting info on the Buddy Walk and Light the Night Walk fundraising! I hope to get that all up by next Tuesday. In the meantime, feel free to email me if you want more info.

Thank you and bless you.

Friday, September 2, 2005 3:45 PM CDT

Exhaustion caught up Thursday, so I missed a day. We are feeling better and yet still somewhat concerned about Kyle. The good news is unquestionably good: his ANC was up to 576 Thursday, a big jump from 133 of the day before. Since it was over 500, we were able to finish the IV antibiotics yesterday and move back to oral antibiotics, which he'll continue at least until Tuesday, when he'll be rechecked at the clinic. This means he doesn't have a port needle in his chest, and that I'm not doing 4 hours of IV admin (the dose was longer than I thought it would be) and that last night I had my first night of uninterrupted sleep since Saturday. Kyle is clearly happy to be home, as well.

All this is great, so I feel a little ungrateful even mentioning the bad news, but here it is: Kyle's cellulitis is still present, and seems to be worsening again today. This, combined with the fact that his counts were bouncing up and down this week, leaves us a little worried about the possiblilty of counts crashing and fever rising, not to mention the nasty infection spreading, so we're keeping the thermometer close at hand. His last count also showed his hemoglobin dropped to 9.6, which explains his pallor and fatigue, but it doesn't require transfusion, and we hope that will just recover on its own. He also is developing frequent and fragrant bm's, and since he has been on three antibiotics in a week's span, and on two this weekend, we have reason to worry a wee bit about c.diff. (a nasty diarrhea bug caused by too many antibiotics). It all may be just fine, but as Brad said last night, "Something's just not right," and I would have to agree. When parents think that, they're generally correct, but we both also think these issues still may resolve on their own. So, I guess you could say we're cautiously optimistic.

We hope our weekend jaunt to Nana's will give us a happy day with no need to turn around and head back to the hospital. We are incredibly grateful that we have roads to travel (though at great expense for gas), and hospitals and pharmacies open and ready with the care and meds Kyle needs. Our brothers and sisters in the south are not so fortunate. I've been investigating any ways to help families with kids on cancer treatment down there; limited access to medical care and pharmacies, and the effect of the contaminated New Orleans flood on immune-suppressed kiddos, is horrific to consider. So far, I've concluded that money donated to relief organizations like the Red Cross will do the most to help, opening transportation, phone communication, and essential services, which can only help families like ours down there. More specific ways to help may emerge in the coming days, and if I learn of anything worthy of passing on, I will.

So, Kyle soldiers on, and prayers right now should focus on hopes that he continues to recover and that this "vacation" from chemo, now going on 2 weeks, does not open any windows for leukemia cells. He'll get IV vincristine on Tuesday, which doesn't affect counts, and we'll see what his counts look like. If his ANC is around 1,000 or more, he'll restart oral chemo (cautiously, I'm sure). I will be sure to update Tuesday, and hope there's no need to update before that! Thank you for your support of Kyle and all of us in these last couple of kind of difficult weeks. Happy Labor Day!

Wednesday, August 31, 2005 4:37 PM CDT

Hi. Here is the 3rd daily entry in a row!! I am happy to report that I'm typing this from home, though in a rush to get Kyle's antibiotics started and homework help for the kid with the big project due tomorrow. Remind me again why I wanted to come home?

Just kidding, mostly. We actually almost didn't get to be here: Kyle's ANC inexplicably dropped from 228 to 133, and the first news from his oncologist was that he had to stay. However, further discussion about the fact that I am able and willing to do IV antibiotics at home led him to release us, and leads me to be doing Kyle's IV antibiotics for 30-45 min. every 8 hours at home. I've done this before, and it's kind of demanding, but doable.

Kyle's fever is still down, and the cellulitis continues to improve. He'll have counts drawn via home care tomorrow. If the counts aren't up to 500 tomorrow (hah), we'll continue IV antibiotics through Tuesday morning and recheck counts next Tuesday at his monthly vincristine visit. Meanwhile, he's homebound in the land of neutropenia, but at least we have more square feet to roam in, our own beds to sleep in, and no bleeping, I mean, beeping equipment and nursing visits to wake us.

Thanks for checking in and your continuing prayers. Kyle is not quite but almost over this particular hump. He'll be off chemo through at least next Tues., which will be two weeks off treatment. I will either do another daily entry tomorrow, or just add the new counts at the top of this entry, for those of you who are interested. Bless you for your concern.

Tuesday, August 30, 2005 8:53 PM CDT

I guess being in the hospital warrants a daily journal entry, so if you haven't read yesterday's, it gives all the info about Kyle's admission Monday.

Today, Kyle surprised us - pleasantly, for once! His ANC is up to 228, just 19 hours after it was 15! Even his oncologist was surprised. His fever broke early this morning, and he awoke drenched in sweat. It has stayed away, and as of tonight, his cellulitis looks like it's improving. The IV antibiotics have been just what the doctor ordered, both literally and figuratively. And the fact that those meds are doing their job means his monocytes get to mature into neutrophils instead of being wasted at the infection site before they mature, which would explain his ANC shooting up. (Either that, or a lab error, but our lab has always been top notch.) His hemoglobin is also up a bit to 10.1 from 9.8. If all these swell trends continue into tomorrow, he'll have had the requisite 48 hours of IV antibiotics and can probably go home! I know a lot of people have been praying for Kyle, and I want you to know we really feel that and thank you for it. I'll post tomorrow, which I hope will be from home by the end of the day.

I want to thank Robbin and Jenny and Stephanie for stopping in and the gifts, and the Indiana Down Syndrome Foundation parents for the cute poster. It's telling that our visitors have been parents of kids with Down syndrome, especially Robbin and Jenny, both parents of kids with Down syndrome and leukemia. It's an exclusive club, and comes with its own brand of humor. I'll share some of it, at risk of you not understanding and finding it terribly offensive since you're probably not a member of the aforementioned club. Robbin and I joked about how Kyle is not really sick enough to allow me to enjoy the hospitalization, because when they're really sick they just sleep, allowing you to rest and shower and all sorts of luxurious things, but when they're not so sick they expect you to entertain them. However, the catch 22 is when they're that sick, you're too worried to rest and enjoy yourself anyway.... Then Jenny and I shared stories about when we've been allowed to leave the hospital when our kids' ANC was still low, and I said once, after Kyle had been inpatient for several days, his doctor offered to let me take him home on IV antibiotics but that it would be a huge job, and I told Jenny that of course, at that point, I would have sold my body to get out of the hospital....

Okay, that wasn't so funny. I guess you had to be there. Perhaps I'm a little loopy from waking after an hour and then three hours and then two hours during the nightly vital signs, antibiotic admin, and fever watch. Tonight, no fever watch, but the rest of the drill is the same. You could be here for a hangnail and they still would check your vitals every three hours. At least, however, I will rest easier during whatever sleep I manage to catch, knowing that my brave little man (who hasn't cried once since we've been here) is getting better and that things are looking up. I vow to bask in thankfulness for that before I start to obsess about when and how we will restart the chemo that dropped his counts and got him here to begin with.

Please sign the guestbook if you have time. I'm reading the messages to Kyle while he's here, and he loves to hear them. Thank you for your prayers. They seem to be very effective, so please keep them up.

Monday, August 29, 2005 11:05 PM CDT

We're in the pen. The big house. It's the first inpatient stay in almost a year, for which I'm grateful, but it is no fun to be here now, either. Kyle's fever bounced around 100 to 101.5 all night Sunday, leaving me sleepless and packing for the inevitable. It hit 102 (underarm) early this AM, and we were at the clinic by 9 for IV
antibiotics and counts. His ANC is still only 15, though his white count went up to 1500. This even though he had plenty of monos last week and still does. The thought is that any immature neutrophils he's spitting out are being
directed to what quickly became late yesterday and today an increasingly nasty case of cellulitis around his Gtube stoma. It's very red, swollen, painful, and is ulcerated around the edge. So, his counts, cellulitis and fever all
sent us directly to a hospital room without passing go. And certainly without collecting $200.

I hate having to be here, but I must say this fever that still tonight won't go away after 2 doses of IV antibiotics, and the very angry looking cellulitis,makes me reluctantly accept that Kyle really does need to be here. We'll be here til fever is down, counts are up to at least 200, cellulitis is improving and ulceration is clearing, and cultures are negative. (We don't think the blood cultures will be positive anyway.) I've been told to count on at least a couple of days in the Big House, and as of tonight, I wouldn't be surprised if it's longer. I am praying, then, for a pleasant surprise.

The good news is that Kyle was fairly happy and chatty and even blowing kisses this afternoon from his bed. He had no desire to do anything today other than sit in bed, though, and fell asleep exhausted tonight, which is exactly what I should be doing before the IV antibiotic/vitals extravaganza commences again at 1 a.m.

Thanks for all your kind thoughts and prayers, which we now especially need. Thanks to wonderful Grandma Sandy for coming down to help out at home. I'll feel a lot better when my thankfulness for being here can switch to complaining that we can't go home yet.

Tuesday, August 23, 2005 3:23 PM CDT

If you already read below, here's the Wed. update: I've decided to cancel Kyle's ear appointment and his sedated hearing test. The sedation nurse said the procedure is in the ER and that she couldn't imagine why they would OK that for a child with an ANC of 8. I told her that my gut tells me we shouldn't do it now, and she was ever so nice and supportive, so it's off. We'll reschedule it all (again) when counts are up. This has been rescheduled more often than the space shuttle lift-offs, but oh well. As for Kyle, he's bored but safe at home, though the cellulitis is looking a little concerning. On to yesterday's update, which if you haven't read it yet, will make the above info make more sense (I hope):

Oh, my mercy, to quote some sports announcer whose name escapes me. Kyle has an ANC of 8. That's eight. That's diddly squat. He is now more than a year into maintenance, that allegedly stable and normal period of cancer treatment. Hah. Life continually is pointing out that normal is a relative term, and the idea of having control over much of anything is a laughable delusion at best. That could be and sometimes is a very negative thing, but it's also downright liberating if you think about it. If "normal" is relative, you can stop worrying about yourself and just be free to be who God intended you to be. If control is an illusion, then you can proceed with your life without worrying that you're going to screw things up with one false move and rest in the knowledge that God has the strings. These are the things Kyle has taught me. If you ever thought having a child with a disability would be a curse, think again. It makes your heart and mind absolutely explode, like the Grinch after the Who's down in Whoville sing "Welcome Christmas" after he snatches their goodies.

Oh, I digress. That's what happens when the beloved nurse practitioner kindly observes that Kyle apparently cannot tolerate a 50 percent dose of methotrexate, since he's crashed on it so many times, but that he can tolerate 30 percent, so maybe we should aim for 40. Then she says that though they would want him at a higher dose, we have to believe that if the small dose of methotrexate is toxic to his good cells it's toxic to his leukemia, too, but they can't be sure, and that we can also hope that the other full dose chemo he is getting, and the 55 percent 6MP dose he's getting, will be enough to keep the leukemia away. I can hear both the worry and the reassurance in her voice, and really appreciate both. They are such good people, both clinically and personally, there. We agreed we are doing all we can and to push Kyle's methotrexate any further would hurt him and defeat the purpose.

So, Kyle is once again off chemo and, now, out of school and out of therapies (and other public places, other than medical appts) for at least a week. We'll recheck his counts a week from today (8/30). In the meantime, his ears have been checked twice, since they want healthy ears for his sedated hearing test this Thurs. Both times, his right ear's tympanogram has been flat, suggesting he has fluid deep in the ear, which could cause temporary hearing loss and makes the hearing test unreliable. So, he has to go in for an ear check tomorrow with the ENT before deciding whether or not to go ahead with the procedure, and I have to make sure that he can avoid potentially contagious kid-ridden waiting rooms before I bring him in, etc. due to his neutropenia. Whew. So, I'll probably add a little update to the top of this after I know what's going on with that.

Okay, good news, good news...I know it's in here somewhere. Oh! Kyle is now 31.6 pounds, helped perhaps by jean shorts and a full diaper, but nevertheless, his weight is again headed in the right direction. Also, he feels pretty well, and he has lots of monocytes in his blood, which indicates his counts should rebound soon. As I recently explained to another cancer mom, monocytes are our friend. Oh, and other and completely unrelated good news: we're getting a second dog. More later after she arrives this weekend.

I have absolutely rambled here, and I'm sorry if you have had trouble following this. I must run off and get Kyle's antibiotic, which he now urgently needs. Pray his counts recover, his cellulitis heals, that the hearing test either goes well or is cancelled if that's best, and that he avoids fevers and worsening infection. Thank you, thank you!

Tuesday, August 16, 2005 11:39 PM CDT

Hello! It's Tuesday, and I'm dutifully checking in. May be pulling a very late night; many work deadlines and resulting tension, but oh well, it's better than unemployment. As a result, though, I don't have the Buddy Walk and leukemia walk info to post yet; will try soon. Please walk with us Sept. 24 if you can. We'd love to have you.

Kyle is adjusting to preschool along with St. Vs therapies well, though he's tired from his busy schedule. His teacher's aide said he seems sleepy. He's pretty sure he doesn't need a nap every day, though. I'm not as sure. His stoma is bleeding a bit, and I just pushed in the second week of the higher methotrexate dose tonight, so we'll see how he does. It was great to see the warm reception from his teachers and aides and school therapists and bus drivers, though, who were all genuinely excited to see him walking! So many beautiful people are in Kyle's world; we are blessed.

I'm struggling with some sad news I just learned today. Baby Donovan, an 11-month-old fellow Hoosier battling leukemia since he was six weeks old, was just diagnosed as having relapsed. He has leukemia cells in his blood, marrow and spinal fluid. Some things in this world are just completely incomprehensible, and this is one. He's just a baby. Please pray for him and his family.

I'm in the beginning stages of starting a special needs ministry in my church, for kids and adults with disabilities of various sorts. Pray for God's guidance and will re. that.

Kyle will be testing his ears Thursday to ensure that there's no sign of infection in preparation for the following Thursday's sedated hearing test. He also goes to the clinic for counts next Tuesday, to be sure that the methotrexate hasn't crashed his counts. I'll update at least once, maybe twice, next week.

I must finish while we've still got a minute left in Tuesday. Heaven knows what I'll be turning into soon. Thanks for caring, really!

Wednesday, August 10, 2005 1:35 PM CDT

Hello! Kyle is back in school, with the assurance of good counts as he starts. Given his frequent illnesses last year, this is kind of nervewracking, but we're thankful he can be there. His teacher could be my son if I'd started childbearing sooner, but he's very nice and seems unfazed, bless him, by Kyle's leukemia. (Cancer, not to mention a Gtube and a subcutaneous port, tends to freak people out, so anyone who seems unfazed by these things earns instant bonus points. Interestingly, the other people who have been unfazed by this stuff include a handful of really wonderful teenage girls and young women who have occasionally babysat for Kyle. I think this speaks highly of young people in general, come to think of it. If you're one of these wonderful people, bless you.)

Kyle had counts yesterday, since he is still on "watch" after the neutropenia of a few weeks ago. They are now high enough to up his chemo, so we're upping methotrexate to about a 50% dose, which is usually about all he can handle. Since this is an up, and since he's entering the land of germs (aka preschool), we'll go in for a count recheck 8/23 (two weeks). All in all, this is good news. Also coming up this month is a sedated ABR (hearing test under sedation) 8/25. This has been put off FOREVER due to Kyle's count rollercoaster and everyone's nervousness about Kyle's airway under sedation. However, his relative strength and successful experience with anesthesia after his last port surgery have fortified our optimism, and we're going ahead. Nevertheless, prayers on the morning of 8/25 will be appreciated.

Everyone is having a banner day today. Brandon starts junior high, Ryan starts at Westlake Elementary (also Kyle's preschool location) in the gifted program, and Kyle started in a different preschool room. I feel compelled to mention that we really have wonderful kids and we are extraordinarily blessed.

Recent cancer deaths and relapses, in the news and among other caringbridge families I know, has reminded me of two things: cancer sucks, and life is good. We'll be doing our part for both things soon: fundraising for the leukemia society's annual walk, which really helps address the "cancer sucks" thing, and walking in and fundraising for Indianapolis' annual Buddy Walk for people with Down syndrome, which is truly the most life-affirming, celebratory event I've ever had the privilege to be part of. I'll post more info. on how to donate to these worthy causes, and/or walk with us 9-24 at the Buddy Walk, next week.

If your school bells are ringing soon, best of luck to you this year. Thanks for stopping by!

Wednesday, August 3, 2005 8:50 PM CDT

Hello! It's been a busy weekend, but I'm glad to report that Kyle is feeling pretty well and hasn't needed to go to clinic in the last week. I feel as if I need a major 2x4 to knock on, since we have almost a week more before the scheduled clinic visit, and his nose is getting junky and a rash has developed. Despite these viral symptoms, though, he's doing well and even eating pretty well, and remains cuter than a person should be allowed to be. He has clinic Aug. 9 and starts school again Aug. 10. The prospect of him joining a new preschool class with new germs makes me a bit nervous, but still thankful that he can attend.

I'll digress a bit onto other family. We had a whirlwind weekend. On Brad's side, his brother and sis-in-law Stan and Carol visited from Georgia, and the family converged in Portland, IN. I attended a conference about how to advocate for people with Down syndrome (aka how to annoy your elected representatives with great effect, when the situation calls for it), and then joined the fam in Portland. Brad enjoyed a high school reunion Friday, so if you planned it, just feel good about that. Saturday's reunion event, planned by the How to Make People Glad They Left This Town Committee, was held in a brightly lit gym devoid of decoration or music, with bleachers for seating, and a buffet table run by a preteen girl. What fun. From there, I visited my mom, which was very nice, then came here for more Georgia relative visiting, which was great. My mom and I are having a little too much bonding as we both are being tested for circulatory problems right now, but oh well. All this relative visiting meant lots of eating out, and a glass of wine for me three nights in a row (!), which could explain my serene outlook at the moment.

I'm so glad to bore you with our lives. It means Kyle isn't so full of news that there's no room for anything else, and that's a good thing. Please pray for Kaden Cassidy; he's fighting for his life after another relapse, and he's making unexpected progress (small miracles) but still has quite a fight.

Since I've obviously left you on pins and needles (hah), know I'll update again next Tues. or Wed., with news of counts, whether the virus behaved itself, clinic treatment info, etc. We all SO appreciate you visiting, and appreciate all the guestbook messages. You mean a lot to us as we continue this marathon. Blessings!

Monday, July 25, 2005 4:20 PM CDT

Hello! I'm updating a day early since today was more eventful than anyone planned! I awoke this AM to find that Kyle had pulled out his inflated (big balloon on the stomach side) mickey button (gtube connector that stays in his stomach), either by getting tangled in the feeding tube lines or by pulling on it. By the time I found it, which couldn't have been too long, his stoma (hole) had started to close, and I couldn't get it back in. We had to go to the ER, where they put smaller tubes in to dilate the stoma, and were finally and with difficulty able to get the right-sized button back in. (I hope all that makes sense.) Anyway, we spent most of the morning in the ER, but he's doing well now and is sleeping off the excitement this afternoon. I, however, find it a bit more difficult to turn off the adrenaline. Oh well, alls' well that ends well, as they say. Kyle handled the whole thing beautifully, with no tears or tantrums; just a little extra tooth grinding. I am amazed by his courage and also a bit saddened by it: obviously, unexpected visits to the hospital are no longer a big deal to him, which says an awful lot about what he's been through the last couple of years.

The good news is that we were able to get counts today at the ER, so we needn't go back in Tuesday. Kyle's ANC has dropped more than 1,000 points since the pred high of last week, but it's still a respectable 1,140. His other counts are down a bit, too, but still within normal range. So, we are keeping him on the same dose (about 30%) for the next two weeks, barring anything weird (who, Kyle??). On Aug. 9, he has his regular clinic visit, and we'll recheck counts then. His weight was not checked today, but we'll just keep trying to beef him up and check that then, too.

I hope you can see the cool slide show that Brad added, above. Daddy has made a big difference in Kyle's site!

I guess right now I just pray for an uneventful couple of weeks, to wind up the summer without further incident. Our kids go back to school Aug. 10, which is inhumanely early, if you ask me, but no one did.

That's all the news for now. I will update again next Tues or Wed, if prayers are answered and nothing else "newsy" happens before then. Thanks for checking in!

Monday, July 18, 2005 6:24 PM CDT

Welcome to Kyle's ANC rollercoaster counter! This week, we're up to the top of the ride, starting chemo again, and praying we don't experience a screaming, frightening fall. Kyle's ANC took a steep climb up to 2664, entirely too high for a kid on chemo, and up nearly 2000 points since just 6 days ago. Amazing what a week with prednisone and without chemo will do. Now, we start him back on what's about a 30 percent dose, and hope the ANC falls no lower than to between 750 and 1500 (his ideal treatment ANC). It's hard to know what to expect, since prednisone always "artificially" elevates his counts, and we don't know what it really would have been without the pred. Next Tuesday, we check his counts again, and if it's higher than 1,500, we'll up his methotrexate. If it crashes, he would be off chemo again, and rather lost on the rollercoaster, and we'd continue to be kind of confused by all this. Kind of like when you don't really like rollercoasters but get on one because your friends talked you into it, and just as the ride is starting, you panic and wonder what the H you are doing.

The good news is that all of his other counts look good, so no cause for dire concern. The bad news is that he's lost more than a pound in a week. The prednisone pulse did nothing for his appetite, though it makes some kids eat everything in the fridge and, if needed, the refrigerator itself. Not sure if the drop in food intake is the only thing behind the loss, or what, but we'll check that again next week, too.

Do you hear Kyle's song playing? Brad put that on. You can stop it if it annoys you. Kyle absolutely loves it, and we will always be grateful to Songs of Love for providing it. Brad is getting into being the techie for this site, which is cool, so you might see or hear more interesting things in the weeks ahead!

Kyle absolutely loved Bible School, and if you're one of the kind souls who helped him during that time, thank you so much. Brandon is home safely from camp and had a great time. All camps are kaput for the summer now, and I'm glad to have us all home.

If you're praying for Kyle, bless you, and this week's main concerns are that his counts stabilize and his appetite and weight pick up. I hope and pray the rollercoasters of your life truly offer only amusement and joy. Come to think of it, even the cancer rollercoaster, though truly scary and unpredictable, also offers a bit of amusement and joy along the ride if you look for it. I pray your joys are easy to find this week!

Tuesday, July 12, 2005 4:38 PM CDT

Hello! Well, the crap is flying, literally and figuratively. Literally, Kyle, who is terribly fond of throwing things, recently reached for his dirty diaper when I had turned to get a new wipe. Brad sees this and yells, "He's gonna throw the poop!" and just as I turn around, Kyle wings the soiled thing across the room, and Brad says, "Oh man, he threw the poop." Maybe this isn't funny to you, but Brad and I found it hysterical. Perhaps we're not getting enough sleep.

The figurative crap comes as a result of today's clinic visit. Kyle's counts aren't that great and he's off chemo again, and the sedation wasn't enough to get his hearing test today, so that's again postponed. On Aug. 25, he needs the regular sedated test. As for his counts, his ANC has been going up and down like a yo-yo for 3 weeks now. Today, it's down, but only to 690, so he's not (yet)neutropenic. He's close, though, and the drop of 750 points in a week, combined with the spinal methotrexate and vinc he got today, is enough to make us think he's in danger of crashing. So he's off chemo this week AGAIN. There's no way to sugar coat this, really. It's just not good for him to be on and off chemo all the time, and it gives that leukemia too big of a chance. It's like walking in front of a lunatic with a gun and announcing that you're unarmed. Nevertheless, there's no indication of relapse now, and that's a major blessing, and no medical professional is freaking out about that possibility, so we won't, either.

No one is sure why his counts have started bouncing after more than a month of (finally) relative stability, but the plan is to hold chemo this week, and repeat counts in a week. His ANC will likely be elevated from the prednisone he starts tonight (the monthly 5-day pulse of the drug we affectionally know as the mood wrecker), and if it is up, we'll put him back on the reduced dose he's been on this week and see how he does. I doubt he'll be reliably stable until...well, I was about to say a month from now, until I realized how stupid such a comment would be. Kyle's counts have been stable about a month out of the last 22 months.

So, that's the bad news. The good news is that FINALLY Kyle's photos are updated here, on the home page and the photo page, and the "He's My Son" song link above is now a hyperlink. Soon, we'll have Kyle's song playing on the site, too. These wonderful technological improvements are thanks to Brad (Kyle's dad, for those of you who don't know us well). He showed me how to minimize pictures using new and better technology, which I'm sure will completely elude me by the time I try it again. Geek abilities are not transferable via marriage, sadly.

Other good news is that my girlfriends are taking me out for my birthday tonight, where I plan to enjoy a rather large drink. Plus, Kyle can still go with me to Vacation Bible School, where I'm leading the closing program, and it's a real high to serve the Lord in a way that shares His message with kiddos. Today is a really odd combination of lows and highs, which I guess is kind of like life.

Thanks for checking in! I appreciate any prayers you say for Kyle. Even when I'm a bit ticked off in this medical journey of Kyle's, God is still with us. Next time you're ticked off about something, try kvetching about it to God. It can be pretty transformational. Have a great week!

Tuesday, July 5, 2005 3:43 PM CDT

Great news, though odd: Kyle's counts are fine! His ANC went from a terrible 40 last Monday to 1,440 today! That's a huge leap, and weird, but I think this is the "don't look a gift horse in the mouth" thing and we can just be glad. He's back on chemo, at about half of what he was on for the several weeks before his counts crashed, equally mysteriously.

His cellulitis is retreating nicely, and he continues on antibiotics through this week. His platelets and hemoglobin counts are also good. We learned all this after (drum roll) a home care nursing visit!! Those of you following our insurance saga might recognize this as the minor miracle it is. Our nurse Cindy worked long and hard to convince our insurance company that a boy with an ANC of 40 should be considered neutropenic, and needing home care, until proven otherwise, and someone there reportedly had a flash of intelligence and agreed. So yes, Virginia, there is still a Santa Claus....

We had a swell time visiting Nana over the fourth, and are glad to now be free to take Kyle wherever he or we want to go. Of course, that also means back to his three therapies starting tomorrow. That plus Scout camp for Ryan and daily band practice for Brandon makes for a busy week. Oh, and in case you're a client, I'm still working...really.

It just occurred to me that we're just less than 2 years til Kyle finishes treatment, and that we're a few months shy of 2 years into treatment, so we're kind of halfway home, so to speak. Many thanks to those of you sticking with us through this marathon. It is a rather grueling and sometimes tedious process; sometimes even we get bored with it. I'm truly grateful to those of you who continue to check on Kyle.

The next compelling entry will come, barring anything major inbetween, after next Tuesday's clinic visit (July 12). That should be a newsy day, with new counts, monthly chemo, a spinal tap, and a scheduled sedated hearing test done at the same time as the spinal tap. (Since Kyle's airways tend to throw a tantrum under anesthesia, we're trying to kill two birds (and not Kyle) with one sedation.) During that week, Brandon will be at church camp (leaving 2 days after Ryan returns from Scout camp). So along with Kyle, please include my happy campers in your prayers.

Thanks!

Tuesday, June 28, 2005 11:18 AM CDT

Hello! I am brimming with both good and bad news today. I didn't update last week because we were on vacation. Anytime you can go on vacation, away from the hospital safety net, with a kid with cancer is a beautiful thing. Anyway,

Really good news: We had a great vacation at Holiday World and then in St. Louis, Wed-Sun. All five of us had a great time, and it was just so nice.

Bad news: Kyle started getting a bit sick on vacation, and the skin around his stoma started getting red, always a sure sign of neutropenia (low infection-fighting white blood cell counts, called absolute neutrophil counts - ANC). We got back on Sunday, called, and I took him to clinic Monday. He has cellulitis (the skin infection) and his ANC is 40. Anything under 500 is neutropenic, so he is effectively unable to fight infection. He's off all chemo meds, got IV antibiotics at the clinic, and is on Keflex for the cellulitis at home. He's also quarantined - boy in the bubble mode again.

Good news despite the bad news: Because I'm prone to optimism, I must point out that Kyle is nevertheless home, is so far resisting any fevers that would land him in the Big House, otherwise known as St. Vincent Childrens Hospital, and is feeling fairly decent.

That we're dealing with this nearly 11 months into maintenance therapy and after a really good month is, to say the least, irritating. Having thought we found a good chemo dose for Kyle only to have him now off chemo and facing the teensy-stepping dance up to the elusive correct dose again is discouraging. But we must keep this in perspective - he's still in remission, and he's not really sick. Things could be much worse.

I read a neat saying the other day: To dream about what you wish to be is to waste who you already are. We're not sitting around wishing he didn't have this to deal with. We're glad he's home and that we have our whole family together, we just had a great vacation, and we keep swimming, with plenty of post-vacation work, house and laundry duties to keep us moving. God is with us, and blessings abound. Hope you have some to count, too.

Kyle gets counts again next Tues., 7/5. Our wonderful clinic nurses are fighting with the insurance company to get those counts through home care so Kyle doesn't have to be exposed to the clinic while neutropenic. For some reason (I suspect perhaps a major lobotomy), the insurance company doesn't seem to understand the wisdom of that. Regardless of how that turns out, I'll update with more news after those counts next Tuesday.

Happy fourth of July!

Tuesday, June 14, 2005 5:15 PM CDT

Woo hoo! Good news all around. Kyle's clinic visit was his best ever. It's the first time we've gone a whole month without counts, though that should have started 10 months ago. His ANC was a good 1,500, which is neither too high nor too low. We are leaving well enough alone and changing NOTHING about his medication levels. His platelets are normal, and his white count and hemoglobin are low but kind of a normal low for a kid on chemo. Praise God!

More feeding formula has come in, thanks to our friend Renee, who is a PT and had a client with extra. Thanks to them both. We really are taken care of; more praises to God. Kyle is also starting dissolvable tablets of prevacid, dissolved in water and shot into the Gtube (thanks again to Andy for the tip). It doesn't completely dissolve, so we'll see if it keeps the Gtube clear or not, but it's promising.

I apologize for a lack of sardonic humor at the moment; perhaps when news is really good, I lose my edge. Or maybe it's the migraine.

Ryan's at church camp, and Brandon is becoming a darn good diver at his 3-week diving program. Kyle is all giggles lately.

Time to go play chaperone to the 12-year-old. Life is pretty darn normal here, which is nothing short of extraordinary. Hope you're enjoying the beauty of everday life. Thanks for visiting!

Sunday, June 5, 2005 10:19 PM CDT

Hi! I'm behind, I know. Sorry, sorry. Thanks for checking in. Kyle is doing swimmingly well. Actually, he's not really into swimming, but he's well. God forbid, Brad said today he thinks Kyle is getting sick, but I think he should bite his tongue! Over the last couple of weeks, Kyle has had new energy and, to an extent, appetite, and just more capacity for orneriness, joy, etc. No hints of low counts yet, and almost three weeks since we went into the clinic! (Where is some wood to knock on???)

So, that's the good news, and what a blessing to be able to lead the report with good news!! Other good news is that people seem to be running into extra feeding formula from time to time, and that's a big help to us, given our loss to the insurance folks. Between that and continued work for my business, we see God providing, as always, and feel precariously comfy in our one day at a time mode, still. We are still trying to find out if we have a better option for Prevacid that won't clog the Gtube like Elmers Glue and won't cost us an arm and a leg like the compounded capsule liquid. Thanks to Uncle Andy for his advice in this matter (he's a pharmacist), and we hope to have it worked out this week. Incidentally, we have a pharmacist in the family and a dear friend who's a doctor, both of whom have come in pretty handy in the last couple of years. I'd highly recommend you collect some of your own. Now if we can just get someone to marry into an attorney, we'll be all set. Meanwhile, if you need a writer or a science teacher's advice, feel free to contact us, though we're not nearly as helpful as these other people.

I must boast about my other two children. Brandon and Ryan finished the school year with several honors, and Brandon appeared in a truly terrific production of "School House Rocks Live Jr." this past weekend.

We are trying to settle into some new kind of normal with everyone on summer break, except Mom. Kyle still has three therapies a week, and they are doing him great good. You should see him toddle around on his feet. What a joy. And he will actually eat little pieces of cheese now! Real progress!

Thanks for sharing our news, which is way more good than bad for a change! Praise God! Also, if you're so inclined, please pray for Kaden, a young boy in Plainfield who has relapsed with ALL for the second time and who is really facing some grave and terrible challenges at the moment. Please also pray for his family.

Gosh, life is so fragile. Squeeze all the joy from it you can. It's a gift from God, whose love is strong in and through and beyond all things.

Thanks for checking in! More news after Kyle's next count and clinic visit 6/14!

Tuesday, May 24, 2005 11:53 PM CDT

Well, we already blew the goal of going a whole four weeks without a call to the clinic, but oh well; nothing dire. Kyle's mickey button (internal to external part of the Gtube that hooks to the extension tube) got all clogged up with prevacid granules (in use and working for Kyle's GERD), and nothing would go through. I had to take it out and managed to finally shoot the stuck granules out with water with a force that violently shot the stuff across the kitchen, where it remains unfound. I guess they really meant that thing in fine print about "not for use with enteral feeding tubes." So, the call to the clinic was to say, "Hey, this isn't working so well." To be kind of brief, we ended up getting prevacid capsules and having them compounded into solution at a custom pharmacy. It works great, but is only good for 14 days, and will cost us about $100 out of pocket a month. In addition, the really helpful pharmacist said Kyle shouldn't be on this long-term because it prevents his stomach from forming acid, which interferes with the absorption of nutrients. But his oncologist seemed to think he should be on it indefinitely since it's working. Maybe we need to see his gastroenterologist. (Pick a specialist. Any specialist.) Another reason to call the clinic. It seems like one solution keeps creating new questions!

So, here's the summary.
Bad News: See above. And a little bleeding around the Gtube stoma.
Good News: Most everything else.
No news: insurance stuff

Yes, Kyle is feeling pretty well, his counts appear to be holding up, though we need at least another week to see how he does with increased chemo.

Everyone is finishing school this week, including Brad, and Brandon and Ryan both have awards ceremonies. Brandon had a fun 12th bday and just got back from a Chicago field trip for the 6th grade, and Ryan just became a Webelos Cub Scout. By next week, all boys big and small will be home. I pray the blessings outweigh the insanity.

One year ago this week, Kyle went into the hospital, where we spent Memorial Day weekend. There's little in life more depressing than spending a deserted holiday weekend in a hospital with your child, who is battling cancer. I do remember discovering around that time that when it seems everyone has forgotten you, God is with you, and that can be enough. Now, I look at our insanely busy week and thank God for the chance to do it all, and for the current and relative health of everyone, including Kyle.

Have a great, safe and blessed holiday weekend!

Tuesday, May 17, 2005 11:54 PM CDT

Only a cancer family crafts a day so they can squeeze chemo and a spinal tap inbetween track and field events. Kyle's clinic today coincided with Ryan's track and field event. This is always a big event, and parental presence is a coveted thing. Kyle and I stopped by before the appointment, saw basically nothing, so came back after clinic. Kyle had just woke up from sedation and was very groggy. I felt like a horrible mother for dragging him there, but then again, I would have felt like a horrible mother for skipping it, too. Oh well. We do the best we can under the circumstances. Ryan was glad to have me there. I must admit to having a little fun telling adults we'd just come from Kyle's spinal tap. That always elicits a look of horror. It's hard to appreciate just how routine a spinal tap becomes to a kid with leukemia. Just part of the package, and then the day goes on.

Okay, good news: Kyle's counts have held and are actually too good. This is a rare thing for Kyle, especially after a recent up in methotrexate. For the next month, we're upping both methotrexate and 6MP by a bit. His ANC should be about 750 to 1500 during LTM; it's more than 3,000 now. This gives leukemia cells too much of a chance, so we try to bring those counts down without crashing them. With Kyle, this is as much art as science, and still an educated guess. More good news is that he hasn't vomited all week and seems to be coughing less, so the prevacid seems to be working on the GERD! We're upping his feeds a bit now to see how he does. His eating is improving slowly, but still pretty erratic, so his oncologist wants him to have the calories and nutrition.

Bad news: Speaking of gtube feeds, the insurance denial of pediasure is final, and the trust won't approve it outside the plan. A wonderful nonprofit organization called Patient Advocate Foundation is trying to help us and feels these decisions are out of line, and will now be appealing to Brad's employer to intervene. Though I'm generally an optimistic soul, I must confess I've lost most hope re. this, and am looking into many options for free and/or discounted feeding formulas. Friends and total strangers have offered help and suggestions re. this, and we thank you all very much. He will get what he needs, in one way or another, and likely in many ways. I know God will provide.

I feel grateful that the bad news of the day focuses more on insurance and that the good news focuses more on Kyle. Not a bad deal, if you have to make one.

Please join me in wishing our son Brandon a happy 12th birthday Wednesday! He's a great brother to Kyle and Ryan and a great son to us. My older boys sometimes get mail from an organization called SuperSibs, and they certainly are that - Super Siblings, and super kids, too!

God bless you!
Beth

Thursday, May 12, 2005 5:04 PM CDT

Gosh, six days have gone by, and I almost forgot my Caringbridge password! I'm happy to report that I haven't posted since Friday because nothing REALLY newsworthy has happened, which is always a good thing. BORING IS GOOD.

Okay, boring may be a bit overstated. We're still picking apart Kyle's troubles, but things are a bit improved.

Good news:
No vomiting since last weekend. And his cough, though still present, is less frequent. The prevacid and bed raising seem to be working. And Kyle continues to walk more! He is a bit fatigued but overall feeling pretty well. He seems to be coping all right without daily breathing treatments, which we hope to avoid if possible, given his hatred of them. I guess everyone has to draw a line somewhere.

Bad news:
He most frequently coughs when eating solids and early in the AM at the tail end of feeds. A couple of times he's coughed up bits of food, when he has solids, which we suspect is actually coming from his airway. So, it does seem that he is occasionally aspirating food. Maybe his lifelong aversion to solid foods stems from a good, common-sense reason! The prevacid is not for enteral use, and I can see why. Getting it down his Gtube is a rather lengthy process, and he won't drink it. However, we press on, and are grateful to have something to try, and glad that the vomiting has subsided, at least for the past few days!

Another bit of bad news came this afternoon, when the insurance company gave us a "final" denial of Kyle's Pediasure. Apparently, as long as Kyle is eating ANYTHING by mouth, the Pediasure is a supplement. The fact that what he's eating by mouth isn't enough to keep him alive seems to be a technicality they're not willing to deal with. We will be looking into continued no-cost or low-cost options. Frankly, this is kind of devastating, ugly news, but I can't really wrap my head around it now. God has really provided for Kyle in many ways, and I've got to believe it will work out somehow. The kicker is that if we push him to eat more and more to get off the Pediasure as fast as possible, we're really going to be pushing the envelope in terms of the aspiration/GERD/pneumonia deal. Okay, gosh, this is really the first time I've thought much about this today, and I think I'll stop now.

Next steps are a clinic visit Tuesday, where we'll revist all this, plus he'll have counts, chemistries, vincristine, and a spinal tap/spinal methotrexate.

Thanks for checking in. More news on Tues. or Wed. God bless!

Friday, May 6, 2005 0:22 AM CDT

Oh, dear, two entries in two days! If no news is good news...

First off, if you didn't read the previous entry and really want to know what's going on, you might check that out first. I won't go into all that here; I'm just popping in for a quick update. Still, though, there's always good news and not so good. (Warning: a bit of this info is gross. This journal deals with reality, which is not always pretty.)

Good news: Kyle went to therapies today and did great. In physical therapy, he walked 25 feet and stood alone for 2 minutes!

Bad news: Kyle began today with a lot of coughing and vomiting. A dose of prevacid only produced more vomiting (along with an intact french fry eaten 12 hours before). Since he bounced back and isn't traditionally sick, it seems pretty certain that it's the GERD referred to in the last journal entry. He also gagged/coughed with solids during feeding therapy. Aspiration is a concern.

I am somehow, through the grace of God, meeting my work deadlines so far, though they are still pressing for the next few weeks. A client called early this AM to discuss a project, and I actually managed to say politely, "I'm sorry, can I call you back in just a few minutes?" What I really wanted to do was scream, "I'm elbow deep in vomit and trying to keep my kid from sucking french fries into his lungs. To say this is not a good time would be a hell of an understatement." So, all in all, I'm doing pretty well, don't you think? Let's just hope Kyle has a better morning Friday.

Have a great weekend. Pray for my friend Robbin, please, who's having major health problems while dealing with her three kids, one of whom has leukemia, and an impending move out of state. Thanks for checking in. God bless you!

Wednesday, May 4, 2005 0:00 AM CDT

Wow. It's 0:00 AM according to the caringbbridge site! I guess that's midnight. I'm a very busy worker this week, and clients are knocking for their stuff, but I had to stop in and update about the star of the page. It's kind of complicated, and I'm kind of tired, so bear with me.

Good news: Kyle's counts are up and we can finally up his methotrexate beyond a teeny tiny dose. Also, Kyle is walking more! He has a new word..."home."

Bad news: Kyle's cough continues, and he's not altogether well.

"the scoop" news:
We stopped into clinic today for a quick blood count and ended up staying for two-and-a-half hours. I wondered when I would actually bring Kyle in for a blood count and leave it at that. These "quick" visits lately have included chest xrays, IV antibiotics, and now consults with a pulmonologist. The nurses joked that if they gave frequent flyer points for time logged in at the clinic, Kyle would qualify for a really swell prize by now.

Kyle's oncologist, bless him, spent a lot of time with us figuring out Kyle's persistent cough and annoying tendency to wake up coughing and blow apart his gtube connection, spewing pediasure and stomach contents in the process. (Okay, that was really graphic - sorry.) He came up with a theory that Kyle may be experiencing GERD (reflux), particularly in the early AM after night-long feeds. His hunch is that he's aspirating this reflux as well as spewing it, causing airway irritation and the cough. (Aspiration means inhaling stomach contents into the lungs and/or airway.) He thinks the cough has done a swell job of clearing the airway and keeping crap out of the lungs, but he also knows that a prolonged situation such as this will certainly create pneumonias eventually. This fits, as Kyle has had pneumonia twice in the last 4 months or so. So, he called a pulmonologist, and together they recommend that Kyle:
1) reduce the rate and volume of night g-tube feeds to 50 cc/hr
2) start prevacid - a GERD preventive antacid
3) have bedtime breathing treatments with albuterol to help open the airway
Of course, this plan is not without its drawbacks, given Kyle's calorie and protein needs. The protein we can handle with a supplement powder, and the calories we'll hope he can get through his diet, or through added pump Gtube feeds through a longer time at night or in the day. The other drawback, which we discovered tonight, is that Kyle now fights breathing treatments with Herculean strength and the resolve of a really stubborn politician. Nevertheless, we're going to try our best to work the plan as is and see how Kyle's doing when he goes back in 2 weeks.

This is a problem that has little to do with leukemia, other than it has some relation to gtube feeds, necessitated due to the effects of chemo on Kyle's appetite and feeding skills. This GERD issue is not that uncommon in people with Down syndrome, too. So, we'll see if that is behind his really bad sounding cough. If so, we can knock out the cough, and more importantly, reduce Kyle's airway issues and risks of pneumonia. I'm really impressed and grateful that his oncologist could think outside his specialty and really function as Kyle's primary care pediatrician, which he has to be during cancer treatment. He's done it so well for Kyle all this time, but this is kind of tricky, and we're grateful for his gifts.

So, there's all the technical details and your medical education for the day. Plans are to see how Kyle tolerates the higher methotrexate dose, and in two weeks he'll get full counts/chemistries plus his monthly vincristine dose and a spinal tap with spinal methotrexate.

Think for a moment if someone told you that you needed cancer treatment for 3 and a half years, three weekly therapies to address your weakness and low muscle tone, tube feedings to compensate for your lack of appetite/inability to eat, breathing treatments for your airway issues, and additional meds and measures to treat your possible reflux disorder. But you can still work/go to school as much as possible while you do all this, and participate in your family life. Would you cope? I wish you all could see my sunny little boy, who loves preschool, church, trips to the zoo and park and playground, all when his counts are high enough to partake in those things, and who is the sweetest natured person I've ever known, full of smiles, hugs, giggles and forgiveness, even for the nurses and mommy who just poked him or made him go through apparently awful breathing treatments against his will. He may be just 5 years old, just learning to walk, and not talking or eating too much, but as far as I'm concerned he is one of the strongest, most Christ-filled, most heroic people I've ever had the pleasure to know.

Thank you so much for caring about Kyle. Despite all he is dealing with, he really is doing fairly well, praise God. Please keep in your prayers Megean's family - she was a teen who had Down sydnrome and leukemia and just lost her battle. Also pray for Kaden, a local boy with leukemia dealing with his second relapse and a poor prognosis.

Finally, please don't let these last couple of paragraphs depress you. Life is hard sometimes, but it's good. God is good. Life is worth living every day, so seize yours and hug a kid while you're at it.

Wednesday, April 27, 2005 3:15 PM CDT

Hello. I'm popping in on Wed. to add a bit of news to my breezy post of Tues. Our decision not to worry about Kyle's cough unless he got a fever or something was working out to be a pretty decent fog of denial until a foghorn blew this AM - Kyle has a fever. So far today it's not too high, and he's sleepy but coping well, so no one is telling us to bring him in or take him off chemo, etc. Who knows...maybe the fever will go away and take the cough with it. (Getting foggy in here again....)

Anyway, back to Tuesday's post:

Egads, it's already Tuesday night, and I'm only now updating. The whirlwind trip to Paris caught up with me, and expensive champagne gives especially gruesome hangovers.

Oh, sorry. Perhaps you thought you'd stumbled into a glamorous and exciting web journal. I'm just blatantly lying, I mean fantasizing. I've never been to Paris, and I have no idea about the effect of expensive champagne (though I must confess to knowing that cheap champagne certainly does have that effect.)

In fact, since we haven't been to, or even talked to, the clinic folks in a week now, I have nothing pressing to report. Hallelujah. Kyle isn't exactly news-free, but we've been trying to ignore the problems he's had, because overall, he's doing pretty well, and because we've come to a place in life where we will grab onto and desperately cling to any sense of normalcy that presents itself. Unless it's a fun kind of abnormal, of course, but alas, no trips abroad have presented themselves.

Kyle's bad news is really just that he still has a horrible sounding cough. The good news is that he's had no fever and feels well. The cough could be something awful, nothing to worry about, or something manageable like allergies, etc. Since the awful chance is miniscule, we're doing our best to just put off asking about it until clinic next week. Since they heard it last week and didn't run screaming into the night, we feel fairly certain it's the kind of thing that can wait.

Kyle's IEP at school last week went pretty well, and he'll be returning to preschool next year, with about the same level of services as this year. This is the best thing for him, so we're fine with it. Maybe he'll even attend most of the time next year!

The chemo regime (sounds like an evil force, which come to think of it, it is - but a very necessary evil) for this week is a half tab of 6mp daily and one methotrexate tab tonight. Between that low dose and the leucovorin rescue med last week after the spinal methotrexate, we're hopeful that his counts may be decent next Tuesday, but we'll see. We are both glad to be rid of the leucovorin; it was just a day, but it made him sick and nauseated. He finished prednisone Sunday. On the leucovorin day, which was given every 6 hours, he was sick and I was tired, and we were both sick and tired. Today, however, is a better day. Amazing how refreshing Paris is....

God bless you.

Tuesday, April 19, 2005 3:46 PM CDT

Hey, the news today is pretty good. The good news/bad news format seems to be turning into a fairly useful tool here, so:

Good news: Kyle's counts are good, and he's not neutropenic. This means he can be on chemo, in school, and generally normal. This is actually awesomely good news. Also, his protein and albumin levels have improved. A dietitian gave us some ways to try to boost protein, and we'll track the results next month. His calcium levels look good. A chest Xray shows no fluid and no infection. His spinal fluid is clear: no CNS leukemia still. On an unrelated good news front: Kyle lost his first baby tooth last week! The adult tooth is already on its way in, and looks a little bit like Godzilla crowding into a minivan.

Bad news: He has a harsh cough and upper airway congestion, which brought us to the chest Xray, which showed his lungs are okay, thankfully. His counts are actually a bit too good (ANC 2,622) which is rather unexpected since he just got back on chemo. It's possible that those white cells have kicked in to fight whatever is causing the cough and airway troubles. But at least his white cells are around to put up the fight, and he has no fever, so that's not all bad. We'll know more with his next blood count.

The plan: Despite his good counts, Kyle is getting a methotrexate rescue drug, leucovorin, which is intended to rescue counts from that chemo drug. He also is staying at a very low level of oral methotrexate and the same fairly low dose of 6MP. He starts prednisone (steroid) tonight, which makes counts jump, too, so we will recheck Kyle's counts in two weeks (May 3) to see how he's doing. On May 17, he'll do the same thing again - IV and spinal chemo.

On Thursday, we have Kyle's IEP case conference at school, which is when we decide on what placement and services Kyle will receive in the summer, if applicable, and for the next school year. I have already won the decision to let him stay in preschool an extra year, so it's just a matter of getting him in the right class and making sure he gets services. I don't anticipate any major troubles. On Friday, we're meeting a family who just had a baby with Down syndrome, where I hope to help them see how the joys of such a child really outweigh the challenges. It's a true "no brainer." It's something you can't possibly understand with your brain; it's only comprehensible with your heart and soul.

Okay, I really haven't amused you much lately, for which I apologize. So here's something: at a friend's son's birthday party, we asked a 7-year-old boy where our sixth-grade son Brandon and my friend's fifth-grade daughter were. He airily waved his hand and said, "Oh, they're probably on the water bed." Being the good, responsible mother that I am, I collapsed on the couch in fits of laughter. Fortunately, we soon discovered that the water bed was "home base" for hide and seek. Whew. I really would rather handle only one family crisis at a time, and Kyle has dibs for now.

Thanks for visiting. God bless you!

Tuesday, April 12, 2005 5:05 PM CDT

Kyle had a reasonably normal visit to clinic today, and his counts are doing well! His AGC is 1,794, so he'll be back on chemo beginning tonight. He's back to the teeny tiny dose of methotrexate (one tiny tab), since that seems to be the most likely source of his crashing counts, and back to the daily half tab of 6MP. We are grateful.

Next Tuesday, he'll have the monthly vincristine, as well as a spinal tap and LP (spinal) methotrexate. His oncologist thinks his counts crashing may be a reaction to the spinal methotrexate seeping into the blood system, so he may get a "rescue" drug called leukovorin after it, but that's still up in the air. We still are trying to figure out this boy's counts! We all share a concern that he has been off chemo too often, between dropping counts and illnesses that prolong the dropped counts, but we all continue to do our best to figure him out. He's not volunteering any information!

I had a chance to talk with Kyle's wonderful nurse practitioner, Deb, today about Kyle's immune levels. With Kyle's IgG levels being only borderline or barely low, they don't recommend IVIG transfusions at this time to boost his immune system. IVIG transfusions in people with low IgG levels can help prevent bacterial infections. They think that since Kyle has such narrow sinus and respiratory passageways to begin with, and since his illnesses have mostly been viral or viral that becomes bacterial, those transfusions present more "cons" than "pros" for Kyle, and there's a good chance he would continue to get sick even with the transfusions, which are expensive, time-consuming and mildly risky. This all makes good sense. It's really too bad that we can't do much to prevent these frequent illnesses, but Deb explained that kids on maintenance and even a year after treatment have immune systems that really are damaged by the cumulative effects of chemo. We'll just hope prayer and some warmer weather will help him out.

Next Tuesday, Kyle will also get a consult with a dietitian before his treatment, to address his "really awful" levels of protein, albumin, calcium and zinc. These issues could be behind his hair loss now, his inability to tolerate chemo, etc., but he can't take multivitamins while on chemo (long explanation; won't bore you with it here). Apparently, you really are what you eat, or don't eat. So why are my favorite foods still cookies and ice cream?

Indiana had a beautiful weekend, and the boys and I got a lot done in the yard. By Sunday evening, Kyle had a blast discovering all sorts of outdoor toys that he was too sick to deal with last summer, like the sandbox, slides, airplane swing, teeter totter and play car. It was so fun seeing him enjoy typical kid stuff. I ran across a photo of him from about a year ago, and it really was "awful." Somehow, when you're going through something hard, you tend to overlook anything horrifying that you can manage to overlook, but looking back, he really looked terrible. It made me realize how far he's come, and that even with the continuing struggles, he's doing much better than a year ago.

Thanks for caring about him and us. It means a lot.

Friday, April 8, 2005 9:33 AM CDT

Greetings from the land of coughs. Things are looking much better for Kyle now, and it appears his illness was simply a virus that, as always, kicked Kyle harder than those of us who are otherwise well. He went back to school today, still with a cough that we're watching closely, and still a bit tired, but overall much better. He had physical therapy yesterday, but missed both his feeding therapies, one because he was really sick, and one because he's not eating much yet, even of the few things he likes, and why waste a feeding therapy on a kid who doesn't feel well enough to eat yet? His continuing cough means we still have to watch out for pneumonia, which he developed after his last virus, but as of now, we're really hopeful that he's on the mend.

On Tuesday night, his fever climbed to about 102 underarm and he was coughing uncontrollably despite meds. I just have to tell this story because it's so sweet. I climbed into his bed to sit with him, and he looked up at me with his big, pitiful eyes and signed "thank you." That was certainly enough to sustain me through a rough, sleepless night. This kid's hugs, pats and kindness could probably create world peace if we could somehow can it and spread it around. (I guess I should admit here that he also throws things across rooms and shoves items off tables, so perhaps the world peace idea is a bit premature.)

Anyway, he's getting much better, but is off all meds until new counts are taken next Tues. His blood cultures were negative for infection, thankfully, and his IgG was again just barely too low, at 459. His nurse said they're happy with that, but I must confess to not being too happy. If it were really low, that would explain why he's getting sick at least every other week, and we could do something about it. Certainly a topic for discussion at clinic soon. I'm sure it is hard to understand why we're getting overwrought about viruses, etc., when we're dealing with LEUKEMIA, for heaven's sake, but to give you an idea, here is what happens to Kyle whenever he's sick:
He misses days of developmental preschool.
He misses the physical, speech and/or occupational therapy at school if he's gone Mon, Tues, and/or Wed.
He misses one or more of his feeding therapies and physical therapy at St. Vincent.
He's off chemo - again. Rememember we're still fighting leukemia, so this is a concern.
He undergoes more blood counts, often IV antibiotics, and limited activity due to the neutropenia that almost always accompanies illness.
He stops eating, and then takes days to recover his appetite. Remember his blood chemistries are a concern, and those are directly related to his nutritional levels.

So, we really hate it when the little guy is sick, and we will do our best to see if there's any way to minimize that. That may be kind of like shooting a cockroach in the dark (okay, weird analogy, but seemed more appropriate than "findng a needle in a haystack"), but we'll try.

I don't know where you all live, but it's absolutely beautiful in central Indiana, with sun, temps in the 60s, spring flowers blooming and birds singing. Easy to find blessings today - just look out the window or, better yet, step outside. We hope you enjoy a beautiful weekend. I'll probably update next Tues. God bless you!

Tuesday, April 5, 2005 4:57 PM CDT

Good news: Kyle's home, and for a while today, we were uncertain if he would be here or at Hotel St. Vincents. Also, it's a beautiful day here in central Indiana.

Bad news: Kyle is sick and feeling crummy, and we are once again reminded how "being sick" is infinitely more complicated and threatening when you have leukemia than it is for most of the rest of us. Also, Kyle is AGAIN off chemo.

Gosh, hope you caught the good news of last week, and my plans to enjoy it while it lasted, because the picture's a bit less rosy now. Kyle had been enjoying more energy and strength, and even walking some! And we did indeed enjoy that, and treasure it as a sign of what is possible when this sweet little guy is feeling well. Right now, though, he's a sick puppy. He started with a cough and low-grade temp Sunday, and by this morning, he had a higher temp and obviously felt lousy. We were at clinic for a while today, getting various tests and procedures which I'll detail in the next paragraph (just a warning, so you can just skim it if your eyes glaze over at the first suggestion of medical mumbo jumbo). Bottom line is that he is sick (duh), that it's probably viral but we'll know more in coming days, that he got to come home after IV antibiotics today, that he's neutropenic but in an odd way, and he's off chemo.

Okay, the medical stuff. Kyle is kind of weirdly neutropenic. His ANC without the manual calculation is 200. However, on further review, he has freakishly high numbers of bands, which make his ANC 500. However, his neutrophils
are low, so we still treat him as neutropenic, and he's off chemo. The bands indicate he's battling infection, which they think is viral, but since his temp is nearly 101 underarm and he feels awful, they still did a dose of IV
antibiotic and a blood culture (to check for blood-borne bacterial infection). We're waiting for the culture result tomorrow and the next day, but if it's viral, that will be negative. (If it's bacterial and positive, that's another story.) They also took blood to do an IGG test, which is an indicator of how well your immune system is working. Since Kyle's last test was a bit low, and since he's getting sick with the frequency that some people I grew up with took a bath (okay, maybe more frequently), they're checking it again. If it's low, Kyle will get IVIG (IV transfused immunoglobulin) on the 19th, when he also gets IV chemo and a spinal tap/IT chemo. I'll find out the IGG level tomorrow or Thurs. I'm supposed to call if he gets worse, and there's still worry about pneumonia developing, but for now, he's home, and there's still hope that it's a bad cold that will go away. He looks a lot sicker than a
cold, though.

He has been sleeping since we arrived home about 4 hours ago, when I could at last give him a fever reducer, and I'm glad he can get some rest. I will update again as he improves or has other developments. Next scheduled step is another blood count next Tues. 4-12. He again could use your prayers, and I'm thinking that you guys must be really good at that, given how well his port surgery went. Have a swell spring day, and God bless you.

Thursday, March 31, 2005 2:29 PM CST

I know I often update Tues/Wed, so I am a bit tardy. Shame on me, because why should I be any less anxious to report great news, or no news, than bad? Maybe it's because it's spring break here, and we were out of town visiting my mom early this week.

I'm overjoyed to report that Kyle recovered from surgery fully, and was pretty darn perky by Easter weekend! He is full of more energy than he's had in a long time, and is walking more steps independently, too! It's so fun to see the joy and pride in his face when he walks. He had a great week at therapy, doing well and trying hard in all three sessions. We are so blessed to have won that insurance appeal and to be back; they really do wonders for Kyle there.

Easter is a day that we celebrate new life in Christ, and in the Christian calendar, it's still Easter season. Kyle seems to have new life this week, too, with more energy, a pretty good appetite, and less need for sleep. We still worry about his quite low blood chemistries (albumin, protein, calcium and potassium), and he has had some on and off abdominal distension, but we have some very skilled professionals analyzing that. For now, we will just enjoy each day. Kyle's back on daily oral chemo, and so far, he's doing well. In a few days, the prednisone will be out of his body for the month. Though pred can make for mood swings, etc., for many, the overwhelming effect on Kyle is heightened energy, appetite, and white counts. That pred honeymoon should be over by week's end, so we'll see how he does after that. He'll have a new blood count next Tues., April 5.

I've been asked if I think all this means that things are going to be better for Kyle now. I'm sure the answer desired would be yes. But honestly, cancer and its complications have very much ingrained in me the "one day at a time" philosophy. That means I don't spend a lot of time dreading and worrying about the days to come, and I don't expect a lot of great things in the days to come, either. Kyle has had a run of good days, and we are very grateful and are enjoying them a lot. Thanks for checking in, and join us in praising God for a successful surgery and the precious gift of a beautiful day.

Wednesday, March 23, 2005 8:27 PM CST

I'm checking in a very weary and relieved parent. Kyle is home! His surgery went well. He had a great surgeon and anesthesiologist, who went extra miles to keep Kyle safe. His airway stayed intact, and his oxygen levels were compromised only for a few minutes, but stabilized relatively quickly. His new port is in place and working great! He had his vincristine and blood draws in recovery, and his spinal tap/it methotrexate in surgery, as well.

He is still very groggy and clearly in pain without pain meds, which make him groggier yet. Recovery will likely take a couple of days. The main concerns at this point are to watch for fevers or other signs of infection, make sure he gets through the night without breathing difficulties, and to get him able to hold down gtube feeds and begin eating and drinking. Tomorrow, Thurs., we'll know his counts and know if we can de-access the port and change the dressing. I'll add to this post tomorrow with news of his counts and his spinal tap.

Many thanks again to all of you who have shown concern, friendship and Christian love to us. We certainly felt a peace as a result.

Thursday update:
Kyle's counts are back, and they are great and even "too high," with an ANC of 5,976. So, we're upping his chemo, though cautiously at first. He's been on a dose not even considered therapeutic, so we're bumping it up to about a half strength dose or a bit less, and will recheck counts in 2 weeks. The goal is to find Kyle's best and most stable chemo dose without crashing him into neutropenia. (We've been trying to get to that point for eight months now, but hope springs eternal....) Also, his spinal fluid is clear - no CNS leukemia. The only bad news, really, is that his "blood chemistries," specifically albumin, protein, calcium and potassium, are very low. A nutritionist will be looking at that to see if we need to change anything in his diet or, more likely, Gtube feeds.

He continues to recover from surgery, and is doing pretty well with the help of pain meds and lots of rest. His counts should be high enough now to fight off infection, so all things point to him being fully recovered by this weekend. Praise God, and thanks to all of you for your concern. I will update periodically as news happens, but no counts/clinic visits are scheduled til 4/5.

Tuesday, March 22, 2005 10:28 PM CST

I realize some have you have checked in, so here's a quick update before surgery. We sooooo much appreciate your concern. Kyle didn't have counts today; the surgeon felt fine going ahead with the high count results of last week. Surgery is Wednesday at 1 PM, in surgery center timezone, which of course means sometime that afternoon to the rest of us. They'll be doing the port replacement plus the spinal tap with IT methotrexate under anesthesia, and once he's recovered and ready to go, we stop by the cancer clinic for his vincristine IV push dose. The hearing test couldn't be scheduled, but that's okay. Then home. That is the plan. Please help me tell Kyle that is the plan, and that we would very much appreciate it if he could stick to the plan this time. He is rarely predictable, medically. I've always had a bit of a rebellious streak, but I never imagined it would materialize in quite this way in one of my children.

Kyle has been in good spirits and pretty good health, and had an awesome time at Kelly's ball. (Kelly has DS and leukemia, too, and is unofficially betrothed to Kyle; please pray for her, too.) He kept this great trend up until this week, of course, and now has goopy eyes and seems to be dealing with a cough now that he's sleeping. We are a bit concerned about what this will do to his surgery prospects, both in whether surgery can happen to begin with and in how well he'll handle the anesthesia. But we'll trust the anesthesiologist for guidance there. We feel the peace and optimism only given to us through the love of Christ, the power of prayer, and the warmth of friends.

Many thanks to those who have remembered us with food, gifts, calls, visits, emails, or website check-ins. Knowing that you took any time out of your busy schedule to let us know you're thinking of us is really a great treasure, and we appreciate this more than we can say.

Friday, Pediasure was denied by insurance until at least the May board meeting, leaving Kyle without this life-sustaining help as of late next week. After some serious prayer and in a great God moment, the company that makes Pediasure (Ross Pharmaceuticals - always give credit to good people) called and offered to give us three months of free Pediasure. Awesome things are happening to us on a rather regular basis. Insurance continues to stall about home care and a few other items, and we continue to be told by health care providers that we are receiving unusual and outrageous treatment from them. We are following appropriate channels, and the battle continues, but boy, we sure do feel taken care of by a power a heck of a lot bigger than an insurance company. Speaking of which, I saw "The Incredibles" with the boys this weekend, and the beginning work scenarios (in insurance) made for some cathartic laughter.

I will update again, hopefully late Wed., with news about how surgery went and any post-surgical plans. Thanks so much.

Wednesday, March 16, 2005 2:56 PM CST

It's a beautiful, sunny day here, and Kyle had his first day back in therapy, and his counts are great. All of this serves to improve Mommy's mood, which is good, because when Momma ain't happy....

We still have a mixed bag of news, but it's leaning positive today. Kyle's ANC is 3,000! This is actually too high, but it's great that he's tolerating the small amount of chemo we restarted last week. We're leaving the dose alone, since upping it could risk making him neutropenic before surgery next week. If his counts are too low before surgery, we'd have to cancel the surgery. This also means he's far enough away from neutropenia that we can go to Kelly's Ball for kids with Down syndrome and leukemia; hurray. Also, Kyle started therapy today after more than 6 weeks off due to insurance battles. It was good to be back, and he had a good session. More tomorrow! He also seems to be almost entirely over the sinus infection, which is good, since he finishes antibiotics this week.

On the less sunny side, we have a new insurance battle. Now, they're withholding approval of home care services, though they haven't denied it, either. But it all requires more paperwork, more letters from the oncologist, more, more, more TIME from me and everyone. We also STILL have no word on the Pediasure denial and whether that will be approved out of plan. Again, more letters, more, more, more. The attorney is on my list to call. Enough is enough. We have had several medical and provider insurance experts say they have NEVER seen this level of difficulty being created by an insurer for a child, or any person, with cancer. If this keeps up, they'll be paying for my anxiety meds. In the meantime, I'm getting very well informed and feeling a little bit like Erin Brockovich, minus the cleavage.

Kyle is inexplicably losing hair and still is quite tired at times, but I think that's just part of the package for the chemo he's on and how it's affecting him. Just a guess. Sometimes he seems like he's doing really well, and other times we get the feeling something's really wrong. At this point, we just have to let go and LET GOD.

Thanks for checking in and for the FLOOD of prayers. Please keep them up - Kyle's nerve-wracking port replacement surgery is next Wednesday, 3/23. People are working hard to schedule any procedure he needs to have done under sedation or anesthesia to be done at the same time as his port replacement, so he'll also have his spinal tap, and they're working on getting his sedated hearing test done then, too, but that's uncertain. He'll have more counts Tuesday, to be sure all is well before the big day. I'll be sure to update Tues. and/or Wed., if not before. Thanks!

Friday, March 11, 2005 7:59 PM CST

I am actually giving an extra update for "good news" reasons, for a change! Today, the insurance company called to say my appeal of the denial of PT, OT and speech therapies for Kyle has been approved! He can get services starting next week, and it's approved through the end of this year!!! This has been a huge battle since Feb. 1, and after today, he would have lost his therapy spots and been put on a potentially long wait list if he got approval later. I've been calling the insurer an awful lot with this dilemma, and they called around 2 today with approval, just in the nick of time. I would like to give a huge public thanks to the wonderful team at St. Vincent Childrens Center for Cancer, St. Vincent Childrens Rehab Hospital, and St. Vincents Down Syndrome Clinic for all the letters and support. They helped us put together a heck of an appeal, and that plus my annoying persistence finally wore down the insurers. I really think this is also a testament to the Lord.

Here's a little story. This morning I sent out prayer requests for Kyle, especially about his surgery, because I've decided that prayer at this point is really his best defense, and I also tagged on a prayer request to pray that insurers will cover whatever services Kyle needs. Plus I was at wit's end today because I couldn't get Kyle to eat anything for breakfast or lunch, and my Pediasure supply is down to 2 cases, and the feeding strategies aren't working, and I was just hating the insurance company and wishing I had those therapists to help me, and I said the most desperate prayer. Less than two hours later, I got the approval call. It's the second uncannily answered prayer request in a week. I don't mean to promise they always work like that. But I must confess I've been especially distraught this week, and yet feeling Christ especially close by, and the weirdly perfect timing of these prayer answers seem to be Jesus saying, "Don't worry. I'm here. I love you, and I love him." It's not a promise of anything specific. But it's an assurance that goes way beyond this life on earth. I hope you know that kind of love. I hope you have a chance to experience it so personally at least once.

Of course, to quote my favorite poet, we still have miles to go before we sleep. The Pediasure enteral feeding appeal is still ongoing with many unanswered questions, but again, Kyle's WONDERFUL doctors and nurses and staff are helping us out with the appeal. The port removal/replacement surgery is scheduled for Wed. 3/23 at 1 PM. Kyle needs all sorts of prayer for this surgery that should be minor, but that caused him very serious problems last time. For this surgery, Kyle's precious nurse practitioner has recruited a man whom I will now refer to as the Surgeon from On High, because she calls him "probably the best pediatric surgeon in the Midwest." Happily, he's covering once a month at our hospital while Kyle's surgeon is on leave, and he will do Kyle's port surgery. Kyle's cancer team is very concerned about his surgical risks and has gone all out to get him the best care, and care that we will be comfortable with. That is so reassuring but yes, a little scary, too.

Kyle's next step is to continue to recover from the sinus infection and to keep his ANC up. (He can't be neutropenic for the surgery, and this surgeon is only at the hospital once a month.) He's on the small amount of chemo again, and he'll have blood counts next Wed. the 16th, so I'll likely post again then. He'll also have counts the day before surgery. These will have to be a regular peripheral poke, either in the hand or inside of elbow, since the port isn't working. Not fun for Kyle, but it's temporary. We also are praying that the clot that's likely blocking the port doesn't break free and start running around Kyle's system with abandon, a situation that is both extraordinarily dangerous and extremely unlikely.

Thank you SO much for your concern and prayers. Never feel like you're helpless to help; those prayers are so important.

Wednesday, March 9, 2005 3:53 PM CST

Hmmm, I thought I could just add to yesterday's post about how the flushing of the 24-hour tPA in Kyle's port worked, but the news is a bit more complicated than that. If you haven't checked in for a while, you'll see other news in the recent posts from yesterday and last Friday in the journal history.

When we went in to flush Kyle's port, it would barely flush at all. So, Kyle was off to the vascular cath lab for a dye study of the port and line. The catch was, by then, the port was so "clogged" that the radiologist couldn't even get any dye in. The best we could do was an Xray, which showed the port and line in place and looking fine. The assumption is that he has the Mother of All Clots cemented in his line. We tried tPA one more time and waited an hour to flush it, but by then, the thing wouldn't flush at all. We couldn't get saline or heparin in it. In other words, it's toast. That's all she wrote. The fat lady sang. You get the picture.

Those of you who read regularly might recall me saying that Kyle's caregivers wanted to avoid port replacement surgery because of Kyle's history with floppy airway and airway collapse, anesthesia issues, and surgical healing issues. However, Kyle needs a port to get chemo, and his monthly vincristine is due next week. Everyone agrees that IVs for the next two and a half years are not an option; Kyle's veins are not good enough, and the risks of severe burns from leaking Vincristine are too high. So, it's back to surgery for Kyle, to pull the old port/line out and put a new one in. Kyle's first port surgery was a nightmare: his airway and one lung collapsed, he stopped breathing, and he was put on a CPAP machine and was in intensive care for three days. However, he's in remission now and should be better able to handle it. We also will now have a reputedly very good (and nice) surgeon, as opposed to the infamous and unnamed Surgeon from H, who may have been good but was most certainly not nice.

Today, Kyle also had a chest Xray, to make sure his lungs are clear following his latest bout with pneumonia. I think that will be fine, but I'll know for sure tomorrow. I'll also know the surgery date tomorrow, I think. In addition, they're trying to schedule his spinal tap/methotrexate and his sedated hearing test for the same time, so we can get more bang for the anesthesia buck, so to speak.

Your prayers have meant a lot to us, and we need them perhaps even a little bit more for this coming surgery. Thanks much.

NEW INFO 3/10: The surgeon of choice is next available Wed. 3/23, so that's the date of the surgery. They'll hold his chemo til then, as well. He'll get blood counts (using an old-fashioned needle poke) Wed. 3/16 and the day before surgery. If all goes well, Kyle will have surgery, spinal tap, and chemo all in the same afternoon and be home that evening.

Tuesday, March 8, 2005 2:35 PM CST

Hello! Gosh, I'm full. I ate Kyle's insurance case manager for lunch yesterday and still have indigestion. (;

Kyle has kept us hopping! But he's hanging in there like the trouper he is. Friday's fever topped off at 100.3 and headed for the hills, fortunately. No hospital for us! The stoma has improved, and the cold seemed to have gone away, until it reared its ugly head as what seems to be a sinus infection. Kyle is again feeling a bit overtired and looks kind of gross, frankly (though cute, of course), but he doesn't seem to feel terrible and still has no fever. He was taken off Keflex for the stoma and put on amoxicillin for the sinuses today. His counts today look great, with an ANC of 2,300, but we all wonder if that's real or if it's just elevated because Kyle's dealing with this virus/bacteria thing in his head. So, of course, we go with the grand compromise: just a teeny tiny bit of chemo. We're back to the last dose, which is an every other day thing, until we see what his counts look like next week.

Today (TUES), his port still was recalcitrant. (That's a great word, but then, I'm weird about liking words.) Anyway, we couldn't flush it easily, and could only draw out with a small syringe, which apparently puts more force on the line and risks bursting it. (Wouldn't that be fun?) So now Kyle is accessed (needle in port) and has tPA in his port until tomorrow morning, at which point the nurse will see if it has improved, and the doc will make plans for next steps if not. Could be a dye study. But we're hopeful the 24-hour tPA will do the trick. I'll try to update with news again tomorrow, either with a new entry or just by adding to this one.

I have had numerous insurance conversations Friday and Monday, all of which are documented, if you'd like some really fascinating reading. (Ha.) On Friday, I told the case manager that their decisions were posing a threat to my child's health and that I had tried to be nice, but was done being nice. So Monday, I kept my word and harangued (good word again) him about many inconsistencies and incomplete info having to deal with their denial of Kyle's Pediasure. I won't bore you with the details, but I had him off the phone and consulting with his supervisor in no time when I asked him to put what he was telling me in writing. (He later refused, and seemed incapable of doing much else but stammer and parrot the company line.) The good news is that the plan administrator (with the trust employed by Brad's employer) had me send info. and will look into having the benefit covered outside the plan limitations. Kyle's cancer clinic admin assistant also found a pediasure patient assistance program that may provide help if these efforts fail. I'm still waiting on news on the therapy appeal, as well as news on some insinuations about coverage of home care services. I'm sure they're not done with their havoc yet, but I've only begun with them, too.

Your prayers are doing awesome things. Kyle is struggling but keeps evading major issues, and I have found an enormous reserve of strength to battle on his behalf. Other cool things are happening on other fronts. For heaven's sake, keep it up! If you need prayer, tell us. We'll be happy to return the favor. All of this stuff going on sucks big time and is absolutely awesome, all at the same time. Gives me goose bumps, really. I'm not even cold.

Friday, March 4, 2005 3:40 PM CST

Two updates in a week? That can't be good news.

Is that what you're thinking? If so, how perceptive of you! I have a feeling that too much will happen before next Tues. for me to keep that entry short, so I'll update here on today's unwelcome events. My previous entry is still newsy if you haven't checked in since Monday of this week, and you can see it on the site's journal history.

Anyway, Kyle is sick with an apparent cold and a red stoma, both of which kind of tell us his counts are not climbing as expected. He's on Keflex for cellulitis again and we are watching his fever, which today has been between 99.2 and 99.9. If it goes over 101, we have to call and probably go in to the hospital, given his neutropenia, current port issues, cellulitis, yada yada. We have reason to hope that the Keflex will kick the cellulitis, and that the fevers are just from a cold and won't get too high, so we do have hope. However, like most kids, Kyle's fevers typically climb at night, so it's still concerning. (Adding an update to this as of Sun. night: Kyle's fever peaked at 100.3 Friday night, and hasn't gone up since, so we avoided the hospital, thank the Lord. We'll see how his counts look Tuesday, as well as check into the port problem.)

The other big problem is that insurance has denied Kyle's enteral (gtube) feeding formula, because it says the benefit policy excludes supplemental feedings. I have to appeal with Brad's employer that the benefit rule is unjust, unless I can convince them that the insurance company has misconstrued the meaning of their benefit exclusion. After all, Kyle's feedings aren't supplemental; they are still his primary source of nutrition. What they've done is inexcusable: first, they denied his outpatient therapies, including the feeding therapies that were aimed at getting him to eat more and eventually not need the gtube. (That's still in appeal.) Now, they've denied the gtube feedings. I told them that this combination is deadly to Kyle; that he had life-threatening complications from malnutrition before, and that without feedings or help in eating, he would certainly be at risk of death. This, I'm afraid, is no exaggeration. I am pursuing every avenue I can think of to overturn these decisions through typical means, as well as am planning to take the matter to my husband's employer, union, and our state insurance commission, and am considering contacting an attorney if things cannot be resolved reasonably. To say I'm angry is kind of an understatement. There's a website out there called "Mothers from Hell" for moms who advocate for their kids. I think I now officially qualify for membership.

God is good, even though the system stinks. We are currently in a very tough spot, and I can't think of any tangible thing that you can do for it. I'm convinced, however, that what Kyle most needs now is prayer. Prayer that he'll get better, that the insurance issues will be resolved to his benefit, and prayer for God to surround Kyle with His protection and to lend strength to all of us. Thanks much!

Monday, February 28, 2005 1:17 PM CST

Hi. Gosh, Kyle keeps giving me plenty of fodder for the caringbridge site. Perhaps he doesn't understand that a boring and uneventful life would be just fine with us, thanks, and that you all would understand if I didn't provide a very good read from time to time.

So, are you a good news first or bad news first person? I'm a good news first type, so here is the good news. Kyle is feeling better. His airways are clear, and the excessive sleepiness is mostly gone. He's still eating, even post prednisone. He has lots of smiles and more energy. Pneumonia seems to have taken a hike. Good riddance. His hemoglobin and platelet levels are also looking good.

Here's the medium news. His swallow study went fairly well, and he accepted juice, yogurt and a little spaghetti mixed with barium. He flatly refused french fries and cookies. The study showed that he aspirated (inhaled) juice one and possibly two times, though he sucked it back into the esophagus at least one of those times. The conclusion is that he may sometimes aspirate liquids, but not often (he had a total of 22 swallows, so one or two isn't awful). The conclusion is to not change anything at this time. It's not totally reassuring, but it's not bad news, either.

Okay, bad news. He's neutropenic again. His ANC is a low 220. However, he has monocytes, which would indicate that his counts should be going up soon. Since the monocyte picture is good, school attendance is at our discretion; that will require a joint mom and dad decision tonight when Brad gets home. We have to weigh the risks of school vs. the risks of spending time with me, since I currently am nursing a yucky cold. The worst part is that he is AGAIN off chemo. That's been happening a lot lately, which makes him a bit more vulnerable to leukemia than we would like. Please pray for his protection.

The other bad news is that the tPA injected into his port today didn't work. That drug should have broken up any clots and freed up the line so we can draw blood and inject drugs, saline flushes, heparin, etc. easily. (It had become very sluggish and resistant of late.) The home care nurse tried it today, but after treatment, the port was actually even worse. The conclusion is to let it go for a week, and he's going into the clinic next Tues. for counts. If they have trouble with it, they may put tPA in to sit for 24 hours. Fortunately, we can take him home with it and try flushing it the next day. Another option is they could schedule a dye study to see if the line is kinked, clotted or what. His oncologist and NP agree, as do we, that surgery for port replacement is kind of a last resort. They, and we, are uncomfortable with Kyle's surgical risks given his history of problems with anesthesia, airway collapse, and wound healing issues.

Still no word on the appeal, though we now have yet another professional (the speech therapist who did the swallow study) saying he needs therapy for yet another reason. We appreciate your continued prayers on this front. We had some answered prayers re. some school issues; they aren't going to fight our decision to keep Kyle in preschool for next school year instead of sending him to kindergarten. He just has missed so much preschool and continues to miss a lot; we feel it's just too early for kindergarten. We had some indication that we'd have to fight for this right, and all indications now are that we will not.

Thank you so much for your concern and your prayers for Kyle. The presence of Christ in our daily lives and the knowledge that so many prayer warriors are on his side means more than we can ever say.

Monday, February 21, 2005 11:23 PM CST

Well, after the eventful entry of last week, I thought I should update. Kyle had a very rough week last week battling pneumonia and other infections, and even fell asleep smack dab in the middle of a doctor appointment! I guess after all those doctors, it does get a bit boring. However, he seems to feel much better now and began eating on Sat. for the first time in a week and a half. He lost 2 of his 30 pounds, the same 2 pounds we celebrated after he gained them not long ago. Perhaps now he can begin to gain them back. No doubt prednisone helped the appetite along, as well as the counts. Kyle's counts all look good, and his anc is 2,700. This is quite high, but his anc usually jumps after prednisone. He is restarting chemo Tues. but at a VERY reduced dose - just one tab of methotrexate once a week and one half tab 6MP every other day. (I know this means nothing to most of you, but my cancer parent friends actually find this stuff meaningful and, sadly, even interesting.) We don't want his counts to crash, making him go off chemo AGAIN, but we do want him back on an ideal dose for him (whatever the heck THAT is) as soon as he can handle it. Next Monday, he'll have more blood counts, and we'll see what they are at that point before we go further. Also next Monday, our wonderful home care nurse Shelly will be putting tPA into his port-a-cath, which is becoming very sluggish when drawing blood or flushing. The tPA should disintegrate any clots in there and free it up.

Though Kyle looks and acts much better, and seems to have overcome the sinus and staph infection, his lungs still have fluid in them and he's a bit wheezy. Nevertheless, he can go to school as long as he feels well. We're hoping the lungs clear; time will tell. Another chest Xray comes in about 3 weeks.

On Wednesday of this week, Kyle has a swallow study. Anyone care to place bets on whether Kyle will actually cooperate with swallowing liquids, purees or solids during the study? If he cooperates, it should help us identify swallowing issues with him as well as see if he may be aspirating during eating/drinking.

All of my massive information gathering for the insurance appeal is complete, and now we await word. It was quite an effort involving letters and clinical reports from two physicians, six therapists, and myself. How they could deny Kyle's therapies after such informed and impassioned statements of why he needs them is beyond me, but we'll see.

We are so, so grateful for your prayers and well wishes, and so thankful that Kyle is improving. Obvously, though, he still faces a lot of things that would benefit from continued prayer. Thank you so much!

Tuesday, February 15, 2005 11:37 AM CST

Hi. We're just back from clinic, and have had such an eventful few days, I thought I'd update. For those of you who like the bottom line, Kyle has pneumonia. He also likely has a sinus infection and a staph infection around his Gtube. So today, he skipped his spinal tap and spinal methotrexate, because they didn't want to risk him having airway problems with the sedation. (Kyle has a history of airway collapse.) His ANC is 300, which is neutropenic. However, it's not 0, thanks to his NP Deb, who had me hold his chemo beginning Friday since Kyle's "too high" white counts during illness usually crash quickly. We still are holding chemo, except today's vincristine and this week's prednisone. He's on augmentin for the pneumonia and the other 2 suspected infections. He'll have counts taken at home for the next two weeks, and have a follow-up chest Xray in a month. (More on this later.) The missed spinal tap/spinal methotrexate will also be in a month.

Now for the rest of the story, as Paul Harvey would say. Kyle has been sick since Thursday, with coughing and fevers that went as high as 103 under the arm over the weekend. On Friday, we were at the clinic, and blood counts were "too" high, indicating he's fighting a bug, but his lungs were clear. He had one dose of IV Rocephin (antibiotic), but the thought was that it was a flu virus. We've had a tiring few days as Kyle was vomiting with coughing and not eating anything or drinking much, but we managed to keep him reasonably hydrated with Pedialyte in the Gtube. This little maneuver, along with the high counts of last week, allowed us to stay home. On Sunday, Kyle's fever seemed to clear, and vomiting mostly stopped, but he still looks bad and seems to feel puny, though he has moments of feeling kind of decent, too.

This brings us to today. Upon hearing his cough, which nurse Cindy said sounded like an old man's cough, they ordered a chest Xray. You know it's not good when the oncologist approaches you after the chest Xray and asks if Kyle has a pulmonologist. (I had to think through Kyle's array of specialists before concluding that no, he does not.) Anyway, Kyle's lung fluid apparently looks just a bit worse than it did when he had pneumonia in June. This could be just two simple and separate cases of pneumonia, but they're concerned that he may have chronic fluid due to aspiration. (Aspiration is when you inhale fluid or food into the lungs.) They especially suspect this because he frequently has had stridor (hoarse breathing), had croup as a toddler, etc. This is a funny "coincidence," since Kyle's gastroenterologist ordered a swallow study for next week because she's concerned about aspiration. So, if the chest Xray in a month is normal, we can assume he had simple pneumonia after the flu. If it still shows fluid, then Kyle will collect yet another specialist when he's referred to a pulmonologist. I would think it's possible that he aspirated this weekend while coughing during drinking/bolus feeding, so maybe it's not a chronic thing. Time will tell.

Gosh, there's so much to cover. We're also considering IVIG transfusions to boost his immune system, but will wait to see how he fares after this pneumonia and as spring arrives. If he continues to get sick, we'll probably do the transfusions; I'll explain more IF he needs them. We're cancelling his sedated hearing test for Friday, due to the sedation concerns with the pneumonia. His hemoglobin and platelets are low, too, but not too bad, and certainly not enough to need transfusion at this point. With his history of croup, they warned me he could get croup, and I assured them that we know what to do with that, and have found it to be a way to get into an ER very quickly. His oncologist said that I was obviously a glass half full kind of person. Indeed.

Kyle's nurse and oncologist were chatting with me, and they were sympathizing that Kyle's maintenance has been so rough thus far. His onc said he seems to have to deal with one thing after another. But, in the spirit of optimism, we came up with the following reasons why maintenance is still better than early treatment: 1) he's not neutropenic all the time, just part of the time, and he goes to school sometimes!, 2) he has hair, and 3) he has gained weight and no longer looks like a POW.

Please keep Kyle in your prayers, for so many reasons I can't think. God will know. Also continue to pray for his appeal of therapy insurance denial, which is ongoing. And hey, to add to our fun, I just now got a call that a routine Xray I had showed kidney stones in my kidney AND ureter, so they want to do a CAT scan of me on Friday. Since we have to cancel Kyle's sedated ABR, I just happen to be free that day. See, things do work out. Ha, smile, wink.

Friday, February 11, 2005 1:32 PM CST

Hello, all. Thanks for those of you who have voiced your support to us as we battle the insurance company who denied coverage of all of Kyle's therapies. See my last post in the journal history for more info. We are in the midst of the appeal battle, gathering info through next week. We have been blessed beyond measure with a care team at various parts of St. Vincent Children's Hospital who have uniformly expressed disbelief and outrage that Kyle would be denied services that he so obviously needs due to his medical condition and that already have been helping him. They are busy preparing and sending letters and copies of treatment notes on our behalf. I'm told insurance companies often encounter families with no energy and doctors with no time to appeal. Well, Kyle's doctors are making time, and believe me, I've got plenty of energy for this. As I said to someone else, they should know that parents of kids with cancer are already mad, and an insurance appeal presents the perfect productive way to direct the anger.

I'm actually posting today, on an unexpected Friday, to let you know that Kyle has been sick with a bad cough, fever and lethargy. He was seen today at clinic, and though it looks like a virus, his white count is 6,000 and his ANC is 5,600. This could be a bacteria or a virus, plus Kyle usually gets an infection when his sinuses are this gunky, so they gave him a doce of IV antibiotic to be safe. This type of white count in Kyle also usually precedes a huge drop. Kyle is as of now off chemo til he gets better. His NP has said that he's too fragile to handle chemo and illness at the same time, as he's proven several times. He's feeling pretty crummy, but it looks like things should improve. We'll know more Tues. at his clinic visit. He's a busy little butterfly for the next couple of weeks:
Tues. 2-15 - cancer clinic: spinal tap, vincristine, blood counts, etc.
Wed. 2-16 - Down syndrome clinic - evals from developmental pediatrician and several therapists, etc.
Fri. 2-18 - outpatient procedure: sedated ABR and OAE hearing tests
Wed. 2-23 - outpatient swallow study (ordered by his gastroenterologist)

Thanks for your continued concern, especially during what's been a rough week. We thank God for all of the blessings we've received from regular people like yourself. So many people have shown how humans can really be instruments of God's love.

I'll probably update next Wed. after Kyle has been to clinic for chemo/spinal/counts and then the Down syndrome clinic, unless his illness or other events make news before that. Have a great weekend!

Friday, February 11, 2005 12:50 AM CST

Wednesday, February 9, 2005 2:08 PM CST

Hello, all. I waited til today to update because I was due to have answers from the new insurance company about approving Kyle's therapies, which he's been having since Nov. for feeding therapies and walking/gait therapy. Unfortunately, it was the worst possible news. Kyle's three weekly therapies were all denied; the insurance company will approve NOTHING. They said his therapies were "maintenance," not rehabilitative. This means they don't think Kyle has any problems that can be rehabilitated with the help of therapy. I am already appealing this decision and calling in all of his doctors for support. All of his medical providers have suggested and supported therapy for him. If Kyle was a typical kid, and he couldn't walk properly after months of vincristine, or lost his tolerance for food textures and needed a feeding tube after long periods of inability to eat during chemo, I think they would see his medical necessity for therapy. But since he has Down syndrome, they can just chalk it up to his disabilities and say it's not going to get any better. I wonder how many of them have seen all the kids with Down syndrome eating and running around with ease. I wonder how many of them have gone through 16 months of toxic chemotherapy or have seen what it can do to children. While it's true that Kyle already had disabilities before diagnosis, he was steadily improving until he got sick. He has taken many steps backward since his illness, and hadn't made a bit of progress until he started therapies late last year. With the therapies, he's making slow but steady progress for the first time. I'm feeling very sad and very mad, but I'm holding onto mad, because that's what's fueled all the phone calls to set up the insurance appeal. We'll appreciate your prayers and positive thoughts for a solution that will be in Kyle's best interest. An appointment next week at the St. Vs Down syndrome clinic will give him more medical and therapeutic evaluations and a good chance for another objective opinion. It will probably be 2-5 weeks before we know anything. Meanwhile, it was suggested that I work more extensively with Kyle at home by myself, which makes me a nurse and three kinds of therapists now. (In my spare time, I guess.)

Sorry for the bitter tone; I'm in a fighting mood, which will likely serve Kyle well. But on other fronts (or ends?), Kyle's yellow diarrhea is much better. His stool samples were negative. However, he does have a nasty cough, upper airway congestion, and dark eyes, so we're watching him closely. I'm checking back in Thurs. to give this update: Kyle has become very sick with terrible coughing nad congestion, plus fatigue and lethargy, but just a low grade fever, so it seems viral at this point. We continue to watch him closely. I'm so sorry. I feel like there's always something I'm whining about here. I'm starting to feel like a hypochondriac on behalf of my son, but unfortunately, all these things are real, not imagined. But gosh, we are in much better shape than some families, like those whose kids have relapsed, and we are not in the thick of heavy treatment, so we do have plenty of blessings to count.

A meeting with Kyle's teachers about why and how we use sign language with Kyle went well, and they are starting to try to use some sign with him at school, for which I'm thankful. I haven't spoken much about this, but it's been a long diplomatic process, and this is progress.

Thanks for checking in. Kyle's next appointments are:
Thurs. 2-10 - gastroenterologist
Tues. 2-15 - cancer clinic: spinal tap, vincristine, blood counts, etc.
Wed. 2-16 - Down syndrome clinic - evals from developmental pediatrician and several therapists, etc.
Fri. 2-18 - outpatient procedure: sedated ABR and OAE hearing tests
Wed. 2-23 - outpatient swallow study (ordered by his gastroenterologist)

We so appreciate your interest and concern. Remember, whether we're fighting or resting, joyful or in despair, Christ is both our peace and our strength.

Friday, February 4, 2005 12:53 AM CST

Woo hoo. Hold the presses, it's the second update in a week. Given that such an event rarely means good news, it's not all that awful. Consider this a poopy update, and I'm not talking about the quality of the information. Today, as I was changing Kyle's diaper for the third time in five hours, I started singing "Follow the yellow brick road," which takes on a whole new meaning when you're staring at the back end of a kid.

I noted our vague unease about Kyle's condition in my last post. By Thursday, the yellow poops were coming faithfully whenever Kyle swallowed any amount of food, kind of like a direct line in and out with more efficiency than a modern assembly line. The onc clinic's advice to wait and see no longer seemed prudent, to coin a phrase from Daddy Bush, so I called Kyle's gastroenterologist. (One of the perks of having a child with Down syndrome is that you usually have an abundant array of specialists at your disposal.) From her, I found out two things. One, Kyle's celiac disease screen was negative, so that's one disorder we can cross off our list. Good news. Two, she agreed that six yellow days of poop with this particular pattern was suspicious. She ordered a stool sample eval. for various poop bugs, which sent me driving through the city with a bag of poop this morning (very attractive, I know); put him on a really expensive new antibiotic that took me to two pharmacies to find; and scheduled an appointment to see him next Thurs. If the antibiotic or time doesn't knock off this little issue, Kyle will be headed for a scope, which isn't the most appealing thought, least of all to Kyle, if he only knew what we were discussing. (Yikes.) Nevertheless, I had some worries about an unidentified illness or, worse, problems with malabsorption, and this plan of care that the gastroenterologist has laid out nicely addresses both of those. So at least I know we're doing what we can, and that is a good thing. Also fortunately, aside from occasional gas pain and fatigue, Kyle is holding his own and feeling fairly well.

I am off to get that little yellow butt to bed so I can tend to my professional clients, who as of now are still unaware that they're being temporarily neglected. Here's hoping the only yellow you're dealing with has to do with sunlight and bananas. Cheers!

Wednesday, February 2, 2005 1:03 PM CST

Oops, I didn't get to post Tuesday. Kyle is doing pretty well, and we are waiting out some issues re. eating, yellow bowel movements (sorry), stoma issues, and fatigue. It may be just a little virus, and there's no fever, so we're forging ahead with normal life, without blood counts, for now. Overall, he's pretty happy.

Kyle's IgG levels are being left alone, and we'll talk about them more at his next clinic visit. They likely won't transfuse IVIG (for his immune system) unless he gets recurrent infections or dips lower.

Did you see Kyle's Veggie Tales picture on the page? That's from a nice group called Tag Artists Who Care, who created a few of these pictures, which they call "tags," for Kyle. Thanks to them! Thanks also to the angels, including Wendy and Cheryl, who have recently remembered Kyle with mailings.

We're still waiting for insurance reviews of Kyle's PT, OT and speech therapy. It's a little nerve-wracking, as it's just for little issues like will he ever eat enough to get off the Gtube and avoid malnutrition; will he ever walk; etc. The therapies are helping a lot.

Not much news, really. To be honest, Brad and I are both trying to shake the vague feeling that something's not right with Kyle; he just doesn't look right, and there's a few vague things. But we're also trying to realize that there's nothing obviously wrong, and that we need to avoid looking for trouble. When you've spent so long hopping from one emergency to the next, maybe it's just hard to relax.

Note the info about Kelly's ball, above this journal entry on Kyle's home page. Kelly has DS and leukemia, too, and her ball is benefiting causes near and dear to Kyle.

Enjoy your week, and pray we do, too. God bless you!

Tuesday, January 25, 2005 2:28 PM CST

Gosh, I'm just pleased as punch that the only reason I'm really compelled to write today is that it's Tuesday, and those of you who check in regularly know to expect an update on Tuesday. For the first time in several weeks, Kyle didn't have a blood count today. In fact, none are scheduled until his regular clinic day Feb. 15. His counts were not too high and not too low last week, so we get to move forward in blissful ignorance (though I've always found ignorance to be more anxiety-producing than knowledge, frankly).

We do have some news, though it's incomplete, so normally I would wait to post it. But since I'm here.... To update you, last week, Kyle's counts included blood tests of his thyroid function, IgG (immune system antibodies), and a celiac disease screen. Now (drum roll) the partial results...thyroid function is normal! (Normal. Did you hear that? Have you any idea how beautiful the word normal is?) Celiac screen is not back yet, so no news there. His IgG level is low, however, meaning his immune system is not quite up to snuff, which could explain the frequent cellulitis and sinus infection. This isn't all that unusual in kids whose bone marrow has been wiped out by a bunch of chemo, as has Kyle's. However, I'm waiting to see if they want to transfuse Kyle with IVIG to boost this figure, or if they want to wait and retest. I also have questions about how that level breaks down, since people with Down syndrome often have lower levels of certain parts of the IgG. I'll post again if I have news.

Now that I've shown my lab expertise, on to the evolving nursing career. This week, I changed Kyle's Gtube mickey button, which is the tube that goes into his stomach and the "button" on the outside that the feeding tube attaches to. I did it at home because Kyle's button was loose and old, and the surgeon's nurse said it was time to change it. It was really quite simple, just deflating the old one and taking it out, and inserting the new one and inflating it (with water). The tube is still a bit loose, however, so we're keeping an eye on it.

My battle with the insurance company went about as well as could be expected (in other words, not well). They won't even review Kyle's therapies or any other of his services until the new policy kicks in Feb. 1. They kindly offered to allow us to fax information to them Jan. 31, so they'd have it available Feb. 1, though they "can't make any promises." I guess this is their version of customer service. (I wonder what would happen if I told my clients I would try to get their projects done on time, but I couldn't make any promises? I bet I wouldn't have many clients left.) Since Kyle's medical expenses are well over $1,000 a week (and on clinic weeks, a heck of a lot more than that), and they're continuous, you can imagine it's causing a bit of anxiety. However, it all should be approved retroactively, with the possible exception of therapy, which we're just going to have to put on hold, praying they approve him quickly and that he keeps his spots. The therapies are making a very visible difference, so we hope they can continue. I don't mean to be ungrateful; I know we have a very expensive child to insure, and that they're overwhelmed when new policies come on, yada, yada. (Heck, face it, it's just more cathartic and fun to mock insurance companies than it is to sympathize with them.) On the therapy note, Kyle's using a new walker to walk long spaces with (not in our house), and he looks great in it. We're pleased that it gets him walking more, which can only be good.

On the family front, Brandon was cast in the school/community musical "SchoolHouse Rocks Jr." This is pretty amazing stuff from a kid who was stage phobic only months ago. Ryan's getting Cub Scout badges tonight and racing a really cool rocket that he and Brad made.

That's all the news. Pretty darn long for a no news day. Sorry. I pray you have a no news days too. Boring can be blissful. Really.

Tuesday, January 18, 2005 1:37 PM CST

Wow, it's Tuesday, which must mean Kyle got through a whole week without disaster! Yes, though he certainly makes life interesting. Last Wed. he was so sick and lethargic and fatigued, it was only the absence of fever that kept him from the Big House, also known as St. Vincent Children's Hospital. But, thankfully, he bounced back by late evening, and we and his care providers are left wondering if it was the methotrexate Tues. night, a weird virus, a symptom of an underlying problem, or just something that came, went and can't be explained. Otherwise, however, he's been feeling pretty well, and his cellulitis is gone. He'll remain on his reduced dose of both home chemo meds, and start the 5-day prednisone dose (also known as the sleep and mood annhilator) tonight.

Those of you who follow Kyle closely will know that the cellulitis being gone and the chemo continuing probably means his counts are up. Indeed, the stoma barometer is still highly accurate. Counts today were: White Count 3,100; ANC 1,900; hemoglobin 11.3; and platelets 228K. These are all very respectable counts for maintenance; hooray! Other blessed news is that his spinal tap today revealed that his spinal fluid is all clear! These are pretty routine tests by now, but still, a clear spinal fluid means no CNS relapse of the leukemia, which is an extraordinarily good thing.

In an effort to rule out underlying problems causing his occasional mystery illnesses, blood tests today also included those for thyroid levels (hypothyroidism is common in Down syndrome and can cause you to feel yucky and have growth problems, but is treatable with meds), IGG (an indicator of how strong your immune system is, and if it's compromised, you can get IV administration of something that helps it), and celiac disease (also common in DS, treatable only by diet, and something I requested because that was suspected before his leukemia diagnosis and he's past due for re-screening). (My apologies go to my writer friends for the previous run-on sentence.) Those test results should trickle in over the next several days.

He's now in full therapy swing at St. Vs, with weekly occupational and speech therapies for his feeding issues, among other reasons, and weekly physical therapy for his mobility/gross motor issues. Interestingly, Kyle's nurse practitioner asked today if he was having any trouble with walking, and I said that the PT and I had noticed he swings his right leg out. She said, "From the hip?" and I said yes, and she said it's from the vincristine. I knew vincristine (his monthly IV chemo drug) could cause leg pain and gait problems, but this is the first time Kyle's been walking enough (with support) to see it. No cure is available and it will last throughout the long treatment process, but the key is to just keep him moving. (As if he needed something else to keep him from walking.) I also got a call from the rehab center, who can't schedule Feb. therapies because our insurance is changing as of Feb. 1. So, I'm off to find help and info from an insurance company, also known as an exercise in futility.

That's the week's report. The rest of us are fine but not nearly as interesting. God bless you, and thanks for joining us in the journey.

Monday, January 10, 2005 1:25 PM CST

Hi! Thanks for checking in. Kyle's status is improving. His cellulitis has taken a weird turn, in that is improving and looks almost normal in the morning, and then gets progressively worse during the day. So he's continuing a few more days of Keflex, and we're hoping to reach the end of this particular infection any day now. His counts today (Mon.) are pretty good, and he's out of neutropenia. His ANC is 1224. So, he'll be back on chemo at just under the dose he was at before the neutropenia began, starting tonight. He seemed to tolerate that dose well for a while (okay, for 2-3 weeks, but for Kyle, that's a while), so we'll try it again and see how he does. He'll go in for a spinal tap and vincristine (his every-4-week clinic visit) next Tues. 1/18, so we'll see how things look then. We're glad Kyle can get back to scaring the leukemia away with the chemo, though of course we are a bit cautious about how he'll react. All in all, though, things are looking up! Thanks so much for your prayers.

Kyle can now go back to preschool, which he loves, but where he says and signs very little. At home and at therapies, he's signing up a storm and saying quite a bit, so I need to try to figure that out (ha). Last week, he had a visit to his ENT specialist, whom I adore but whom Kyle is a bit unsure of. After all, he hates having his ears poked at, and that's mostly what this lady does, so it goes to figure she wouldn't be one of his favorite people. Anyway, his hearing tests were inconclusive, so he's having a sedated hearing test (ABR) on Feb. 18. It looks like his hearing is either normal or that he has an "aidable loss" (i.e. able to be helped by hearing aids). This week, he adds physical therapy to the therapies he's receiving at St. Vs Childrens Center for Rehab. So far, he's had occupational and speech therapies, primarily for his feeding difficulties. Now, the PT should be able to offer help for and insight into his continuing weakness and inability to walk more than a couple of steps alone.

So that's the news here. Sorry if it was not too entertaining; I'm feeling a little comatose. Note to self: get more sleep. Thanks for your continued prayers.

Tuesday, January 4, 2005 3:12 PM CST

Happy new year! Here's just a reminder to enjoy each day as it comes, because planning ahead is a silly folly of the hopelessly deluded and uninformed. I think I had said that Kyle was scheduled to go three weeks without blood counts. Ha! I may have mentioned that I wondered if his counts might still crash since he had been on prednisone before his last count (which elevates counts), and alas, I was correct. This weekend Kyle's skin around his g-tube stoma started looking red. Cellulitis was kicking in, which is like an incredibly accurate barometer. He gets this every time he develops neutropenia (low neutrophil counts/no resistance to infection). I guess it's nice to have a clue, so on Monday I called to order (I mean request) blood counts, and his ANC is a lowly 190. So Kyle is off the sinus infection antibiotics, and on Keflex for the skin infection, and off all chemo.

We of course are watching closely for spreading cellulitis despite the antibiotics (a very bad thing) and/or fever. Cellulitis, despite the fact that it's become something of a routine for Kyle (proving you can get used to just about anything), can nevertheless become life-threatening very quickly. If things get worse, it would be time for IV antibiotics and quite possibly an inpatient stay. On the up side, this hasn't been necessary in the past, and he'll probably recover fine, and the main concern will be when and at what levels to restart his chemo. Being off chemo is also not such a good thing for a leukemia patient, but sometimes, you have to pick your poison.

We feel blessed to have gotten through Christmas, travels and New Years Eve with friends with a relatively well Kyle, and that our other boys are doing great. Kyle is feeling okay, other than an ouchy cellulitis area and being bored because he's out of school and his brothers are gone at school, which means he tears up the house at a more rapid pace. What fun. We pray, however, that he continues to feel well and that the cellulitis goes away and his counts come back up quickly so he can get back on chemo next week. (Who the heck ever thought we'd be praying for chemo? Life is extraordinarily weird sometimes.) Anyway, we hope life is weird for you in only surprisingly wonderful ways. More updates next week after the blood count, unless something else arises. Thanks much!

Wednesday, December 29, 2004 9:33 PM CST

Hello! We hope you had a very merry Christmas! I so appreciated returning to new entries from visitors old and new! We are so thankful to have had a relatively healthy and crisis-free Christmas, complete with travel. What a difference a year makes! We enjoyed a nice Christmas eve with Brad's family here, a Christmas morning with just the five of us, followed by 4 days of travel to grandmas' houses. We came home today in time for Kyle's blood count, which brought more good news!

Kyle seems to have responded to the antibiotics well, with all fever and sinus symptoms disappearing. Confirming that this was the correct course, his ANC plummeted from a way too high 12,000 to a very respectable 1,970 today. Now, most kiddos on maintenance therapy for ALL get their chemo dose upped when ANC hits more than 1,500, but Kyle's mark is 2,000, since he's so darn sensitive to chemo. So, we get to spend the next three (!) - that's right, THREE! - weeks without counts or chemo adjustments. I do wonder if his counts might dip lower since he's just coming off prednisone (which tends to raise counts), but time will tell. As of now, we get to lead a somewhat normal life heading into the new year (as normal as one gets on daily chemo, antibiotics and g-tube feeds and three therapies a week, anyway!). On Jan. 18, he starts his next phase of maintenance with a spinal tap, spinal methotrexate, and more vincristine. For those of you not embroiled in life with cancer, the spinal tap both delivers spinal chemo and checks spinal fluid to be sure there's no evidence of leukemia cells in the CNS system. Kyle has had too many of these to count, so it's no biggie, really. Just thought I'd offer another fascinating bit of education.

Kyle's biggest gift was an adapted tricycle, with special pedals and back support, which has many therapeutic benefits plus will be a lot of fun when his brothers get out on bikes and scooters this spring. He liked most all of his gifts, but only a few at a time, which some people found disconcerting, but which I think suggests Kyle may have more sense than the rest of us combined. Many thanks to Christmas Angel Elizabeth, who sent amazing gifts to Kyle and the whole family. Kyle's favorite new movie is Teletubbies' "Funny Day." If you'd be interested in being an angel to a child with cancer, or helping those who do so, be sure to check out www.cancerwarriors.org. They are wonderful. You also can support another great group trying to help families of kids with cancer - Friends of Allie - by purchasing their "Cooking for a Cure" cookbook at www.cafepress.com. Kyle's photo and story are in the cook book!

Finally, a really nice friend of Kyle's Uncle Andy and Aunt Jill in Ohio is running in the Leukemia and Lymphoma Society's Team in Training marathon, which is quite an event, in honor of Kyle. To donate to her marathon, and thus support the leukemia and lymphoma society, just visit her website at http://www.active.com/donations/fundraise_public.cfm?key=ginadicello. Thanks, Gina!

Sorry, I didn't mean for this entry to end up sounding like a commercial. There are just so many people doing amazing things for Kyle and kids like him lately, and I wanted you all to know about it and know how to help if (and only if) you feel moved to do so.

This week will be busy with everyone home, me trying to work a bit, and celebrating the new year and enjoying some family time. We are so grateful that Kyle seems to be feeling well at this point. I'll try to update each Tues. or Wed., even if he doesn't need blood counts. I hope to visit all the caringbridge pages of those of you who have visited here and have one, but in the meantime, please know I am praying for your children, too! Thanks so much to all of you for your concern, and have a happy New year!

Beth

Tuesday, December 21, 2004 1:19 PM CST

Today was supposed to be a quick update about Kyle's brief clinic visit for vincristine and blood counts, which should have been a 20-minute stop at most. Once again, God and Kyle have pointed out that human plans are somewhat silly and that life is unpredictable, as is Kyle. Last night, after a week of pretty smooth sailing, Kyle spiked a 101.3 fever under the arm (equivalent to about 102 orally), after a day where he became increasingly fatigued and fussy and just feeling puny. Since he hasn't been neutropenic, we were spared from the need to call and go into the hospital, thank God. Today's clinic visit, though, was a bit more of an adventure than originally planned. Kyle's white counts are really high (12,900) and his ANC is about the same (12,000). This kind of jump makes leukemia parents nervous, but the good news is that he has no blasts or other signs of leukemia returning. Lacking that, a count like this typically means the body is very busy fighting a bacterial infection. Of course, Kyle for once shows no sign of infection other than the fever, but he has had puffy eyes and some congestion, so it could be a sinus infection. Today, we drew blood cultures to rule out blood infection and ran IV antibiotic, to be followed by 3 weeks of oral (Gtube) antibiotics at home. We hope that does the trick, and we can manage it all at home unless that high fever continues day after day.

Since Brandon had a sinus infection a couple of weeks ago, it's a perfect compare and contrast to what life is like for a healthy vs. ill child. Brandon had a high fever, went to the doctor's office, was diagnosed with a sinus infection, got a 10-day course of oral antibiotics, and was back in school in a day. No biggie. Kyle gets a high fever, goes to the cancer clinic, gets a blood count, gets people excited about a weird blood count, gets diagnosed with a possible/maybe sinus infection, gets blood cultures drawn and run, gets IV antibiotics, gets 3 weeks of oral antibiotics, and has an order for more blood counts in a week, plus instructons to call/come in if the fever persists for several days. Kind of a biggie, but in the end, we pray, the result will be the same -- healthy, infection-free kids.

Last Thurs. Kyle had a physical therapy eval, and they found several reasons why PT for Kyle is "medically necessary." The new year will likely involve 3 weekly therapies for Kyle - PT, OT and Speech, the latter 2 primarily focused on feeding issues.

The rest of this week will focus on getting Kyle well, leaving chemo doses the same, and starting the 5-day dose of Prednisone Tues. Blood counts are scheduled for next Wed., and probably again a week after that. Deb (Kyle's nurse practitioner) observed that Kyle can typically handle an illness or handle chemo, but not both at the same time, so they'll wait a couple of weeks before they'll bump any doses up, if needed.

More importantly, we hope, the rest of the week will focus on Christmas and family and friends. We hope and pray you have a wonderful holiday. Christmas is all about hope and love, and we thank God that we still have plenty of both.

Tuesday, December 14, 2004 11:47 PM CST

Thanks to all of you generous souls who sent birthday messages to Kyle in his guestbook or via mail. It has been overwhelming and so nice! Feel free to say happy bday to him still if you'd like. Kyle gets a bit overwhelmed by too much stimulation, so we are parceling out the cards and messages a bit at a time, day by day, and he is enjoying every day! Thanks, too, to the angels who sent gifts, and all their "friends of Allie" who have stopped in on our guestbook or sent cards. You folks could restore anyone's faith in humanity.

Speaking of faith (and hope), Kyle's counts that looked promising last week with no real foundation of hope, but that made me hopeful nonetheless, are still looking good! His ANC is up to 2,000 from 1,100 last week. Maintenance ANCs should be between 750 and 1500, ideally, and I'm told we don't want to let him get up past 2,000 for long, as it could give the leukemia a chance. So we (and I do mean we - Kyle's nurse practitioner has taken to making this a joint decision between she and I) are increasing his chemo a bit - just an extra half-pill of methotrexate tonight, which is about a 20% increase in that weekly med. He gets clinic IV chemo next Tuesday, so we'll have a chance to recheck counts and see how that increase affects him before Christmas. Given Kyle's drug sensitivity, especially to methotrexate, we're not sure what it will do, but it shouldn't be too drastic. (Here's hoping again!) I prayed over the dose tonight, which was really very cool. Administering chemo every night and splitting pills accurately, etc., can be a kind of lonely and awesome responsibility. Not sure why I hadn't thought to invite God to be my partner in the effort before (or rather recognize Him as such)! So now, med administration is a spiritual experience.

Kyle has his new, Elmo orthotics. He got them yesterday, on his birthday! He's still getting used to them, but they're very nice. He had a physical therapy evaluation at St. Vs today. If this all goes through insurance approvals, which it seems to be doing, he'll have OT and speech for primarily feeding issues and PT for gross motor skills, like walking. This is a lot of time and effort for both of us, but I do feel better pursuing it. Kyle has a lot of issues from his Down syndrome that have been complicated and exacerbated by the weakness and fatigue caused by leukemia and chemo. These therapies are really very needed now, and it feels good to be able to do something about it, get some expert advice, and know that he is now strong enough to start working on these issues.

Please keep the Frenzel family in your prayers. Tyler Frenzel was a 9-yr-old who was the honored hero at our Light the Night walk this fall. He had ALL, too, like Kyle. He couldn't be at the walk because he had relapsed just before it, and he died on Saturday. I didn't know Tyler or his family, but he was a patient of Kyle's St. Vincent Children's Cancer team and his home care team. I'm sure they could all use your prayers. By all accounts, Tyler was a special and very positive boy. His death demonstrates that though leukemia is increasingly curable, it still eventually kills about 30 percent of the children who are struck by it. The leukemia and lymphoma society is one of Tyler's memorial contribution suggestions, and their efforts to support both patients and research are well worth, and in need of, our support.

That said, please know that Kyle is doing well, is still sorting through birthday greetings and gifts with delight, and is well-positioned to enjoy a happy, healthy Christmas. Praise God. Have a great week, and I'll update again next Tues. or Wed. before Christmas.

Tuesday, December 7, 2004 12:16 AM CST

It's the weekly Tuesday update! I'm happy to be in much better spirits about Kyle this week, despite a few glitches, which could be 1)an indicator that generally speaking, all is well, 2)an indicator that your prayers have given me a greater sense of trust and peace, and/or 3) I am now officially insane and out of touch with reality.

On the blood count result front, Kyle's ANC is 1100 today, down from 5300 a week ago and up from 154 three weeks ago. The clinic wants him to stay on his 50 percent 6mp and mtx doses and recheck next week to see if they crash more, or go up enough to increase his dose. I can certainly see the wisdom of this, since his counts have been a rollercoaster ever since entering LTM. (Well, actually, ever since diagnosis.) I have this sense of hope, though, that maybe he's stabilized. After all, 1100 would be a very respectable ANC for LTM, and maybe 50 percent is just Kyle's dose. He's really sensitive to meds, and no one expects him to reach 100 percent, anyway. No medical official has given me this hope, but it's there, anyway. I'd appreciate your prayers for this hope, in whatever form is best for Kyle, to become true.

He seems to have mostly recovered from his virus, is eating better, and his intestinal routines seem to have normalized a bit, too. (Is that PC enough?) His stoma is a little red and swollen, but I've asked to hold off on putting him back on Keflex unless (until?) it gets worse. The clinic staff said that's fine, and that they were sure I could tell when it gets bad enough to need treatment. Just one more credential for my faux nursing degree!

Meanwhile, we're back to helping Kyle battle developmental delays, now that his strength is returning and we have occasional bursts of energy to focus on things other than cancer. He was fitted for new orthotics (foot/leg braces), and I'm glad to say he can move back into SMOs, which are just ankle-high, and move out of the AFOs, which came to just below the knee. Even cooler, these orthotics will be covered with Elmo faces. In Kyle's world, you really just can't get any better than that. Also, Kyle started occupational and speech therapy at St. Vincent Children's Rehab Center, which he will continue every Thursday morning for a while. He's also starting PT, though we haven't found a good time for it yet. This will put us at St. Vs once or twice a week. (Just when we got down to monthly visits at the cancer center. I guess we really just can't get enough of that place.)

Many thanks to angels for gifts coming in. How nice. Kyle's birthday is next Monday, 12/13! Please join us in wishing Kyle a happy fifth birthday!! I'm not sure I've ever been so grateful for someone's birthday before.

I don't talk much about our other wonderful boys, but their life has been busy lately, too. Ryan did a great job in the Chrismtas play, and Brandon did a great job running lights for it. Brandon is back in gymnastics, but is currently battling a sinus infection. (One benefit of cancer: little things like sinus infections no longer produce much, if any, worry in Mommy. Heck, he even had a 101 fever with no need to run to the hospital! What a cakewalk.) Ryan also received an award last night for getting all A's last year.

I'm getting too long. Perhaps I should do this more than once a week. Anyway, thanks for checking in!

Tuesday, November 30, 2004 1:50 PM CST

Hi! Hope you all had a happy thanksgiving! We were thankful to get out of town, after all, though Kyle certainly had his share of feeling yucky while we were gone. Things are looking up a bit, though. After worries about Kyle's lack of eating, inability to hold feeds, distended belly, and general lack of activity, I'm happy to report that things are a bit better, and counts are okay. Liver panels are all low/normal, so no concerns there. Miralax produced some BM, but we still have concerns about his motility, so we're keeping a close eye on all things brown and beautiful. (Sorry.) Counts are really quite high after drifting down last week, but that's immediately after steroids, plus he seems at this point to be battling a virus, both of which can artifically raise his counts. So it's kind of a no-news blood count, but at least it's not bad news!

As a result, he's staying at the same 50ose of 6MP and mtx, despite an ANC of 5,300. We're rechecking counts next week, and will adjust meds as needed based on that count, when he won't be influenced by steroids and when, we hope, he's feeling better. We continue to be a bit concerned about his health, but things are not worse and are a bit better, and the liver tests and high platelets relieve any nagging concerns about liver toxicity. So, it's time to pray for peace and wellness and just wait for next week's counts. One day a time. (Still.) I'm very grateful that he's home and still leading a semi-normal life.

Of course, now, four months into LTM, he should be on a regulated dose of chemo and having counts once a month, not once a week. I've been told that, given Kyle's susceptibility to catching illnesses and his hyper-sensitivity to chemo and all meds, we may be messing with his doses and dealing with issues throughout LTM.

Thanks so much for checking in. Happy Advent! I'll update more next Tuesday, or before if news arises. Meanwhile, if you're near Speedway, check out the church Christmas play ("The Not Too Perfect Nativity Play") Sat. night at 7 and Sun. afternoon at 2:30 at Speedway United Methodist Church. Ryan is in it, I'm directing, and Brandon is doing lights. Peace!

Tuesday, November 23, 2004 2:15 PM CST

Well, it's the big field trip day. Woohoo. Kyle made it to clinic (after a sleepy mommy missed the exit and couldn't find a parking spot, leaving her wondering why they don't serve wine at St. Vincents Hospital. The nurses said they had comtemplated a margarita machine, but thought perhaps they better not. I love those people.) Anyway, Kyle received blood counts, vincristine (IV injection chemo) and spinal methotrexate (during a spinal tap). As if this weren't enough fun, he is feeling pretty puny, and spent part of yesterday afternoon vomiting up what little he ate during the day. He has eaten nothing today and is currently asleep. His stoma is looking red again, and counts are drifting down, so he's back on Keflex after finishing the last dose Friday. His ANC was 1,100, down just a bit, so he'll stay on the 50% dose of oral 6MP and have blood counts checked again next Monday or Tuesday, before we decide whether or not to give him the oral methotrexate that's due Tuesday. He starts the 5-day monthly prednisone pulse tonight.

We honestly aren't sure what's wrong, given his anorexia, fatigue, vomiting, gagging, etc., but at the moment we're going with the assumption that he has a stomach virus. It doesn't totally add up, but it seems the best bet, and probably the least worrisome. However, all this and drifting counts puts Mommy on high alert, of course. I'm praying he'll wake up feeling peachy, the Keflex will (again) work wonders on the stoma, counts will behave, and we'll have a lovely time away for Thanksgiving.

I'm feeling much better, for those of you keeping up on my kidney adventures. The stent removal Friday left me with kidney and ureter spasms that were only slightly less painful than, well, I don't know what. Incredibly painful. Fortunately, copious use of pain relievers and prayer got me through an awful handful of hours, and I am much better now. End of my story. This is Kyle's page, and he's infinitely more interesting, not to mention cuter, than me, anyway.

On other Kyle news, I've spent a few hours this week trying to catch Kyle up on his other, non-cancer-related needs. He now has appointments to be evaluated for new orthotics next week, to start speech and OT feeding therapies next week, to have his ear tubes and hearing checked in January, and to have a check-up at the Down syndrome clinic in February. This, I'm afraid, constitutes planning, which I have become quite averse to in the last year. (Why plan something when you can predict nothing?) In fact, when people ask if we're traveling for Thanksgiving, I have been usually replying "I think so" or "I hope so," even now, just a day before we are to leave. However, he needs all this other stuff, so we're going to give it a whirl.

Many thanks to Sung and Heather for the packages this week. We love our angels! They brought smiles to Kyle and each member of our family this week. Find more about their great group at my cancer warriors link at the bottom of Kyle's page.

Have a happy Thanksgiving! We are very thankful for you and your interest in Kyle. Bless you!

Thursday, November 18, 2004 11:18 PM CST

Hi there. Kyle managed to avoid the rotovirus scare of early this week and is doing well. He went back on oral (actually Gtube) chemo Tuesday at a 50% dose. Chemo has got to be the perfect example of damned if you do, damned if you don't. On the one hand, you can't feel real comfortable about having your child be off chemo due to low counts -- what kind of chance is that giving the errant leukemia cell? On the other hand, pouring chemo into him just when he's starting to feel and eat better after a week away from the stuff is a pretty disgusting feeling, too. Kyle, however, is unmoved by this philosophical theorizing. Silly mommy. Come watch Veggie Tales with me and dance. Good idea, Kyle.

Of course, dancing has been somewhat of a challenge this week. On Wednesday at 5:30 a.m., we showed up at a surgery center for a urologist to stick a tube up my swollen, infected ureter, blast my recalcitrant kidney stones into bits, and pull them out with a net, rather like a fisherman with a really good catch. He also left a stent behind to hold it open, which is only slightly more comfortable than the stones. Walking around with a stent must be something like a Texas tart walking around after a particularly busy night at the old 'House. However, the good news is that the stent comes out Friday afternoon, leaving me free for plenty of Veggie Tales dancing this weekend.

We enjoyed an early Christmas treat tonight watching the Rudolph DVD from angel Cheryl. Thanks, Cheryl! On Tuesday, Kyle will miss the "big snack" event at preschool for the exciting monthly field trip known as clinic day. He'll have chemo and blood counts, so we'll know what to do with the meds' doses before Thanksgiving. I'll update once more before we all head off for the Big Feast. Just heading off for it will be something to be thankful for; last year's holidays were all spent at home in the thick of heavy treatment and neutropenia for Kyle. So even if we're in a car with whiny kids, we'll be thankful. Cranky, but thankful. Thanks for checking in!

Monday, November 15, 2004 6:04 PM CST

Hi. Thanks for the nice messages in the guestbook. Kyle has had ups and downs this week and is still tired, but the cellulitis is clearing up, and he's feeling better. His ANC is up to 1480, and other counts are fine. So, he can start chemo, though the ANC is not signficantly high given his week off chemo. After much deliberation, we've decided to restart chemo at 50% strength tonight. Next Tues., he'll have counts again along with his IV vincristine at clinic, so we'll see how it is then, and increase more as needed. Since entering long term maintenance, his counts have bounced from 1,000 to 0 to 8,000 to 2,000 to 150 to 1480. As his nurse practitioner said today, "Kyle is just so hard to predict." Many thanks for your prayers, and we're so grateful that cellulitis didn't cause more troubles.

Rotovirus, which causes diarrhea, has hit Kyle's class, but since it's been detected and they're cleaning and bleaching like crazy, Kyle is cleared to go back to school. Pray he avoids the virus and we're making the right decision. This will help him kick the stuck-at-home neutropenia boredom, plus help me, Mommy. I have been in significant pain from the kidney stone after a well-timed reprieve over the weekend. Today, after an X-ray, urinalysis and CT scan, I found out I have two stones that have obstructed my ureter and caused a kidney infection. Next stop is a urologist's office to see if I need to have a procedure to remove the stones, and I suspect the answer to that may be yes. At least I have the white cells (and an antibiotic) to fight the infection; a kidney infection in Kyle would be ever so more alarming. How many people do you think say prayers thanking God for their healthy white cells? Not something that ever occured to me before, but cancer does open many new windows of perspective.

However, pain is now clouding the view, so I'll sign off and update more as info comes. Thanks for your prayers, love and support.

Tuesday, November 9, 2004 12:11 AM CST

Well, we're back in the land of neutropenia. Kyle isn't feeling very well. His counts today showed a white count and ANC low enough that we are stopping all chemo and keeping him homebound. Certainly brings back memories of the first nine months of treatment, and none that we would care to revisit, frankly.

In an effort to reassure and be positive, let me say now that his other counts are fine and that he certainly seems to be solidly still in remission. We continue to be incredibly thankful for that. Here is the count rundown for those of you interested in that:
White count 700
ANC 154
Hemoglobin 11.1
Platelets 290K

Neutropenia, if you're new to the site or the cancer world, means you don't have enough "good guy" white cells to fight infection. As if to illustrate this point, Kyle has again developed cellulitis (skin infection) around his Gtube stoma. It's red as a Christmas bulb and way ahead of the season. He also has a nasty cough, fatigue, upper airway congestion, and a runny eye. Given his neutropenia and his exisiting virus, he's ripe for the picking if a nastier bug would come his way, so it's a few days of boredom at home for Sir Kyle. In addition, cellulitis can grow quickly to a very serious level, so he is back on antibiotics. We are to call and go in if he develops a fever. Right now, a bottle of Keflex is the only thing standing between Kyle and Hotel St. Vincent. If Keflex doesn't improve it, he'll likely be back on IV antibiotics by week's end.

His protocol demands that he go off chemo when his ANC is below 750, so he's obviously way below that threshold. (If we continued chemo with low counts, it would just make him sick and more thoroughly neutropenic.) We hope his counts will rebound quickly and that we can reintroduce chemo, likely at a further reduced dose, after another blood count next Mon. or Tues. Obviously, long periods without chemo is not a good thing, but we do expect his counts to recover soon. We've been told that with the winter viruses, etc., we could probably expect Kyle's counts to go up and down a lot, since they haven't stabilized at this point (3 and a half months into maintenance). So, no one knows when his ideal chemo dose will be determined. ONE DAY AT A TIME.

At home, Kyle must deal with a less than perky mommy, as one of my kidney stones has decided to move, which is causing me quite a bit of pain today. At least it's not contagious. But if it runs true to form, it will either pass or settle in somewhere more comfortable, either of which would be fine.

So, in short, your prayers are most welcome right now. In short, we're praying that counts go up, infection (and stone) go away, and that there's no need to go into the hospital. Thanks so much. And thanks to all of you who have signed the guestbook; we read it regularly and so appreciate your support.

Tuesday, November 2, 2004 9:22 AM CST

Happy November. We are singing praises to God that Kyle enjoyed trick or treating this year! He was a very cute Teletubby, and he really got the hang of it. He enjoyed hanging on to his bag, walking with help to the doors, and even said thank you a few times after he got candy. Of course, he doesn't eat candy, but he still had a great time. (If you don't know Kyle, please don't think he doesn't eat candy because we're some kind of anti-sugar fanatics. He just has feeding issues and won't eat it. The rest of us are all happily in insulin shock from now through Christmas.) Anyway, it was so inexpressibly good to see him able to enjoy this. I never appreciated how wonderful it is to see kids running through the neighborhood in costume. Just awesome. We were all remembering how Kyle's trip to the ER and leukemia diagnosis came last year right after we finished carving pumpkins. Needless to say, this was a much better holiday. Thanks for the many well wishes and prayers we've received.

One more week til we re-check Kyle's counts. He is done with antibiotics and is much less snotty and no longer green, but he still has a nasty and even deeper cough with some wheezing at night. He's right on the brink of getting better or getting worse, so we're praying for better.

Today, Tues, was Kyle's IEP case conference. Kyle needs an IEP plan reviewed and revised every year, which states his educational goals, etc. It's one of the most depressing hours of the year, usually, though they're very nice. It's just that the weaknesses of a disabled child are so much easier to identify on paper than his strengths, and you spend an hour discussing all of them. Not exactly a party. But it gets Kyle some of the services he needs, so we press on. I must say I have a different perspective, however, on the importance of all the little details of it. I mean, he's alive and happy. The rest is gravy. Worth working toward, but still gravy.

Anyway, updating now after the IEP meeting, it went fine. I was actually a little glib and not exactly full of worry during some of it, and Kyle's teacher looked at me kind of funny. I said, "look, this is the first meeting about Kyle that we've had in a year that's been about something other than how to keep him alive." They all said, "oh!" - and from then on they seemed pretty giddy, too. Here's hoping we all take ourselves a little less seriously unless we absolutely have to.

Have a great day. I've posted new pictures on our photo page if you'd like to see more recent shots of Kyle (with new hair!). Thanks for your support, as always.

Tuesday, October 26, 2004 3:32 PM CDT

Kyle has returned from his big day of spinal tap, spinal methotrexate, IV vincristine, and blood counts. He did very well, and was very cooperative. Hugs to our wonderful doctors, nurses and nurse practitioners at the St. Vincent Children's Center for Cancer and Blood Diseases. What a blessing they have been to us.

Kyle is fighting a nasty cough and yucky snot, and his white count has risen again. Our instructions are to start antibiotics to try to knock what appears to be a burgeoning infection (don't you like that word - burgeoning?). This could be raising his white counts. (Even your white counts go up when you're fighting an illness - did you know that? Having cancer in the family is endlessly educational, though I don't recommend you try it.) We'll recheck his counts in 2 weeks (11/9), and if his ANC is still more than 1,500, we'll up one of his chemo drugs, the 6MP. No effort to raise the methotrexate is planned as of yet, which is good, since Kyle has developed a pattern of fatigue, lack of appetite, rashes and tummy troubles since the last increase. Not sure it's related, but it could be.

If I haven't lost you already, here's some more medical data: Kyle's counts from today.
White Count 3,500
ANC 2,940
Hemoglobin 10.6
Platelets 214K

Though the ANC is too high for long term maintenance, they are overall very good. (A "too high" ANC in maintenance is actually low compared to most typical people. But the goal is to have his ANC low enough to show that the drugs are actually doing their job of preventing leukemia cell growth, but not so low as to put Kyle at high risk of infection, etc.)I still have to remind myself to be concerned when it's too high. We spent so much time worrying about his dangerously low ANC during the first year of treatment, that high seems much better by comparison. That first year, it was the treatment that most often threatened Kyle's life. Now, we're back to worrying more about the leukemia itself. But so far, so good; no need to worry now. One day at a time, remember?

Many thanks to our angels, some known and some unknown, who have been sending gifts and cards. Kyle was diagnosed a year ago this Friday, on 10-29-03. For cancer parents, this is a notoriously emotional time, full of both gratitude for having come so far and a bit of sadness for having settled into a rather undesirable new normal life with cancer. Thanks in part to our angels, and in large part to our Lord, we are mostly grateful at this bittersweet time and looking forward to parading our little Teletubby around the neighborhood for trick or treating on Sunday, which he and Mommy missed last year while he was hospitalized. Life is a really swell gift from God. Hope you have a good Halloween, too, and find a little goblin to hug.

Tuesday, October 19, 2004 10:16 AM CDT

Mark the calendar! No medical news to report! Kyle's counts and med doses I posted in the last journal entry are all the same. He continues to do fairly well and is cute beyond measure. Some intestinal issues and a stubborn diaper rash tells me his counts may be dipping, but we will cheerfully ignore that unless a fever arises; he gets counts and chemo and a spinal tap next Tues., 10/26, so we hope for a pleasant and blissfully ignorant week 'til then.

Kyle braved weather that was 30 degrees below normal last Saturday for the Buddy Walk, and did fine. We all bundled up and had a really great time, despite the weather, though we didn't stay as long as usual. With most charity walks, you feel good knowing that you're walking for a noble cause. With the Buddy Walk, you have that, but it's also just a big, feel-good party, and a real celebration. There was awesome art for sale by a man with Down syndrome, good music from people with Down syndrome, and just hundreds of sweet kids and nice adults with Down syndrome surrounded by hundreds more people who love them to death. Buddy Walks are all over the country, so consider walking with us or in another one next fall. It is just an incredible thing.

Cancer Warriors are showering us with angels. Our newest is Wendy. Thanks so much to all of you.

I'll try to post new photos next week. This week, work, fall break, and a short trip to see my mom, the boys' Nana, will keep us busy. Praying Kyle and all of us can enjoy some family time. Last year's fall break trip to see Nana was our last out-of-town trip for many, many months, as Kyle was diagnosed 10-29 and was very sick for a long time. We're grateful to be able to travel with Kyle with a reasonable level of confidence. Praise God.

Tuesday, October 12, 2004 11:39 PM CDT

Kyle's counts are looking great - White count 3200, Hemoglobin 9.8, Platelets 255,000, and ANC 2,700. This is quite a drop from 2 weeks ago, which is fine, because those counts were entirely too high. Since the goal ANC for long term maintenance (LTM) is 750 - 1500, his ANC is still too high, so we're upping his weekly methotrexate dose to 3 1/2 tablets, which is a 75 percent dose. His 6MP was moved from 50 percent to a 75 percent dose 2 weeks ago. If you'll recall, the 100 percent dose crashed his counts and contributed to his infection and hospitalization and 3 1/2 weeks of IV antibiotics, so we're not anxious to go too high in the dose too fast. However, since he's further into LTM now than when he had those problems, he may be able to tolerate doses now that he couldn't before.

Kyle is feeling really well right now. He is eating a little, more than in a long time. He is loving school, though it tires him. He looks better than he has since diagnosis. We still face a long road that may offer some twists and turns, but we are grateful for this positive turn of events at this point. For the last almost year, we've taken one day or even one moment at a time to get through what was frankly some really terrible times. Now, we take one day at a time to fully enjoy Kyle's good times and progress for that day, trying not to worry about what the next day or month or year might bring. It's the same philosophy, but we are very grateful to be able to change its focus a bit, from surviving to enjoying.

Kyle is all clear to walk in the Buddy Walk this Saturday! We're so glad; it's such a fun, fun day, and so positive. It's a real celebration of people with Down syndrome, and believe me, there is much worth celebrating. Pray for nice weather; that's somewhat in doubt.

Thanks to whatever angel referred HeavenlyHats.com to us; they sent Kyle some wonderful hats. His hair is returning but is still kind of thin, and these were such a nice anonymous surprise. Thanks to our angel Cheryl, our Christmas angel Elizabeth, and birthday angel Heather, all from CancerWarriors.org. Thanks to the wonderful parents on the ALL-KIDS acor list for all their support and sharing themselves. I am very grateful to all the flesh and blood friends and family we have in our lives, but wanted to take a moment today to thank these cyber friends who really have been tremendous friends, too. In the midst of all the news about bad people in the world, know that there are tremendous numbers of really good people who truly act as instruments of God's love. If you'd like to be an angel to a child with cancer, check out www.cancerwarriors.org.

Have a great day, and go hug a kid.

Wednesday, October 6, 2004 3:33 PM CDT

Kyle had a little chicken pox scare, but all is well. A little girl at preschool on the playground seemed to have chicken pox and had recently been exposed. However, Kyle wasn't around her long, and it was outside. So, his oncology clinic staff isn't too concerned. There was some concern about subsequent exposure from potential other, newly infected children, but the thought was that Kyle's early CP vaccine would give him some immunity despite his suppressed immune system, and that if he did get it, we could treat it quickly then. (Kids on chemo can have deadly complications from untreated chicken pox.) However, now we are really unconcerned: just had a message from the teacher that the little girl does not have chicken pox after all. Perhaps that explains my lack of worry about it over the last day; God was letting me know it was a false alarm.

Kyle had his flu shot today. Looks like it may be a bit difficult to obtain for the rest of us, given the shortages, although as the family of a child on chemo, we are in the high-risk group that's currently approved for the shot. We'll see. Never thought I'd be trying to find a way to get a shot, but it did seem to help our whole family health when we all had one last year. Worth a try, anyway, if we can.

We all did the Light the Night walk for the leukemia and lymphoma society Sunday night. Many, many thanks to all of you who donated. We have raised $1325 to date! Love and thanks, too, to the Adams family for walking with us, though they may never come back since we nearly lost their youngest son on the walk route. Nothing like a little excitement to spice up a charity walk. If you'd still like to donate or walk with us, please consider the Buddy Walk for the Indiana Down Syndrome Foundation on Sat., 10/16. It is a great cause and a really fun, positive day for all ages.

Kyle has a new "angel" from a group called Cancer Warriors, who send mail/small items periodically to kids with cancer, and sometimes to their siblings. There are such nice people out there, really. Our angel is Cheryl; we just "got" her today. Many thanks to Cheryl. I hope that someday this will all be over and then we can be an angel, too.

Kyle got through his five-day steroid pulse pretty well. It ended on Sunday. (He gets prednisone the first five days of every 28-day cycle of treatment.) Not too much irritability, and his appetite picked up some (which for Kyle is a good thing). He is eating not a lot but more, so in a few days we'll know if that's our feeding strategies working or was just the steroid-driven appetite kicking in.

Next blood count will be Mon. 10-11, at which point we'll see if his previously weirdly high white count/ANC has dropped, and how much, to know whether to further up his chemo meds. If his ANC is still over 2,000, they'll increase the methotrexate, which is still at 50ose as of now. That all makes us a little nervous, though, given Kyle's track record of methotrexate sensitivity. We'll see. I'll update more on Mon. or Tues. (Gosh, maybe I should update more often so this doesn't get so long!) Thanks if you've stuck through and read all this. Please sign the guestbook and say hi if you'd like. We love to hear from you.

Much love,
Beth, Kyle and family

Tuesday, September 28, 2004 4:56 PM CDT

Kyle had an eventful day today. Actually, yesterday, he had his Gtube mickey button swapped out for a smaller size, and that's working fine. Today, he had his clinic chemo (just vincristine this time), blood counts, and then followed with a 2-hour session with the St. Vs feeding team, which consisted of a psychologist, occupational therapist, speech therapist, and dietitian, all experts in feeding issues. Kyle performed both his good and bad feeding behaviors expertly (from smiling and chatting and charming them to pushing and throwing food all over them), and they all were nevertheless impressed with his skills and his intelligence. (They said they've seen much less ability from kids without a diagnosed disability such as Down syndrome.) They gave us some good, simple, but hard behavior tips to do to reinforce Kyle's feeding successes and shut down after his negative behaviors. They also suggested OT and Speech therapies, each one time a week, starting in about a month and lasting 8-10 weeks (16 - 20 visits). This would be at St. V's pediatric rehab hospital at lunchtimes for about 45 minutes. More to do (sigh), but definitely worth it if he can make some progress!

Kyle counts today were good, perhaps too good. The high white count and ANC are a bit unexpected, especially from a boy who was thoroughly neutropenic just 4 weeks ago. But then again, when has Kyle done anything expected? We are upping his home chemo dose a bit and will recheck counts in two weeks. His counts today were:
White Count 9,100
ANC/AGC 8,190
Hemoglobin 10.4
Platelets 269,000
This is basically nothing to be alarmed about, but nothing to ignore, either. The increased chemo dose and recheck in 2 weeks should tell us more.

Much to do here tonight, so no time to be amusing. Just glad to have moved through the day (so far). Thanks for checking in and your continued prayers!

Tuesday, September 14, 2004 10:37 AM CDT

I'm happy to report that I'm typing this while Kyle is in SCHOOL!!! The long, drawn-out IV antibiotic routine has seemed to successfully battled Kyle's infection, and the cellulitis around his stoma is much, much improved. He continues on IV vancomycin through Friday night, for a full 10-day course, since his cellulitis was so bad, and his one positive blood culture was for enterococcus. Plus, it's always best to give a full course of antibiotics, anyway. By getting rid of the cephapime, though, his IV admin. period is down to about one hour 3 times a day, which feels much better to Mom than 2 hours.

On top of this antibiotic news, Kyle's counts are much, much better, too! That is why he is back at school. You should have seen his smile when he saw his backpack and bus this morning. That boy just loves school. His counts were:
White Count 3,000
ANC: 1,300
Hemoglobin: 9.3
Platelets: 347,000
That is also high enough to restart the oral chemo meds (6MP daily, and methotrexate once a week). Due to his clear inability to tolerate a full dose, we move to a half dose now (1/2 tab instead of one, etc.). In 2-4 weeks we should know how he's tolerating that according to his counts, and then will adjust up or down as needed. We really hope and pray that he doesn't go through the same problems of low ANC, fevers, hospitalization, infection that he faced in this first month.

Thank you to the neutrophil cheerleaders and all those praying - obviously, you've done a great job. We pray that Kyle will not only stay well, but be well when it's time for his Light the Night leukemia walk 10/3 and his Down Syndrome Buddy Walk 10/16. You're welcome to join us; info is above.

Thank you so much. I'm off to try out a more normal life, especially when Kyle completes his antibiotics by this weekend. I'll update as news arises. His next count and clinic visit isn't scheduled until 9-28. Thanks and much love from us all.

Thursday, September 9, 2004 2:33 PM CDT

Greetings from the sleepless land of DeHoff Childrens Hospital! Our house looks like a bizarre combination of family home, professional office, and hospital room, a fact made even more bizarre by the truth that it is, indeed, all of that. Yesterday I sunk to new depths by bribing my 11-year-old with money to keep Kyle from throwing his attached IV pump across the room while I furiously worked to meet a deadline for a client who is probably among the many deluded souls who think it's a luxurious set-up to work from home. Ha! I did, however, find benefits of waiting for IVs to run between midnight and 2 a.m.: quiet time to work and actually, wonder of wonders, meet my deadline.

I can muse about these things because one, sleep deprivation makes your mind work in strange ways, and two (and more importantly), Kyle is doing pretty well. On the bad news front, he still developed a fever last night, and the blood culture taken Tuesday was positive. (The culture takes 48 hours to grow, and a positive result indicates there is an infection in the blood, which is considered an extraordinarily bad thing.)However, a second culture taken that day with a new tube cap was negative, so it could have just been germies on the tube cap. Bless them for trying that, because if we just had the one positive culture, we'd be flying to the hospital for what would probably be unnecessary heroic measures. As it is, his team is satisfied to let him continue IV antibiotics at home, which is good, but since that one culture was positive, he has to keep doing both antibiotics 3 times a day through Monday. If the third culture is positive on Sat. night, I guess we'd be flying to the hospital then, but I don't expect that.

Which brings us to the good news. All indicators are that Kyle is getting better. His ANC is up to 209, which is still neutropenic, but definitely moving the right way, and all his other counts have held or moved up, too. On a more gross but still encouraging note, the infected skin around his Gtube is starting to peel, which could indicate that the infected stuff is dying and sloughing off. (Sorry if that's too graphic. There is very little that can gross me out anymore.) So far, we have no evidence that he's getting c. difficil - the nasty diarrhea bug that he's had before when he's been on more than one antibiotic - but time will tell. (Sorry, gross again.) Thanks to the cheerleaders and prayer warriors!

If all goes well, we will likely have no counts or major news (or much sleep) until Monday. Kyle will spend the weekend quarantined in the house/office/home hospital, no doubt amusing himself by trying to crawl away from his IV pump while still attached, or pulling the line to see how tight it will get, which gets a really cool reaction from the rest of us. Hope you have an exciting weekend, too! Blessings!

Wednesday, September 8, 2004 2:26 PM CDT

Hi. Kyle is feeling pretty well, and Tylenol is keeping his fevers at a reasonable level. The home IV antibiotics administration is going fine, and he had blood counts today and a clinic visit. The vancomycin is not causing any problems, so we continue on both antibiotics at home. His ANC has taken another dive to 0, but his platelets are steady and his hemoglobin is a respectable 9.5. His care team believe he's making neutrophils (infection-fighting white cells), but using them all to target the staph infection in the skin around the Gtube, which is why he can't hold an ANC. If the vanco starts to kill the infection, then his ANC should be able to build. Until then, he is again living the life of the boy in the plastic bubble, except that the bubble is our untidy house. Oh well, nothing is ever like the movies.

Thanks to all of you who have stopped by, and those of you cheering his neutrophils. It gave me quite a giggle today. Keep cheering and praying for neutrophils to build and the infection to get the H out of Dodge, and perhaps Kyle and family will soon recapture that tantalizing glimpse of near-normal life we had for a few weeks.

Tuesday, September 7, 2004 11:45 PM CDT

Hello, all. Wow, we've had an eventful week. Today is just one week since Kyle was admitted to the hospital for fever and neutropenia. If you've been keeping up, you know he went home Thurs. on IV antibiotics. We had a nice weekend visiting Kyle's Nana. Last night, though, he started to spike a fever and just seem more sick, and his Gtube stoma was very red and tender. Kyle had an axillary temp of 102.8 this morning, rising ever since last night. (But it comes down with Tylenol.) Our home care nurse was scheduled to come for a blood count, anyway, and drew cultures along with counts, which we'll know more about in a day or two. His ANC is 100, which is up a bit, but still quite low.

Kyle's oncologist believes he has a staph infection in the cellulitis around his Gtube stoma. He started IV vancomycin at the clinic today, and continues on IV cephapime (sic?), too. Amazingly, Kyle's oncologist allowed me to take Kyle home and do a home IV routine that is rather demanding and very rare to allow at home. He said he is confident in my capability of doing so, but made me promise to let them know if it was just too much nursing work to do at home, and then he could go inpatient. He will also go in if he seems to act sick beyond the fever and/or if the fever doesn't respond to Tylenol. I basically do about 2 hours of IV pump infusions, 3 times a day, for a total of about 6 hours. This is a lot, but doable, and so much better than being stuck in the hospital. (There's actually not much I wouldn't do to be able to stay home and pretend to lead a normal life.) All this will continue til Kyle's ANC goes up and his stoma looks better. I appreciate your positive thoughts and/or prayers for all of us. If you happen to have had a past in cheerleading, you might consider a few "Go teams" for the neutrophils (ANC) in Kyle: they need to build and fight, fight, fight.

Thanks from a tired but grateful Mom,
Beth
mom to Kyle, age 4, diagnosed with high-risk preB ALL

Saturday, September 4, 2004 11:26 AM CDT

Sorry, busy, busy. Kyle got home from the hospital late Thursday. His counts went down Thursday, despite expectations that they would rise. But he felt well, so they let us bring him home on IV antibiotics. His ANC was 14. His hemoglobin was low, so he had a red blood cell transfusion before coming home. He'll remain on IV antibiotics until Tuesday at least, when he'll have a new blood count. I adminster the IV antibiotics via a pump over 30 minutes three times a day. We've done this once before, so it's no big deal; just takes time and makes for some late nights. But we are very, very grateful to be sprung from the hospital. He has again perplexed his oncologist, because his counts should not have crashed so significantly and should have begun to rise, but then again, Kyle has never been predictable. We are back to a strict adherence to one day at a time again, but are optimistic and glad to be home. Have a great weekend, thanks so much for your thoughts and prayers, and we'll update more Tuesday.

Wednesday, September 1, 2004 11:50 AM CDT

Kyle went into the hospital with a fever that went as high as 102.4, and neutropenia (no immune system). His ANC was 0. Today, though, he's feeling much better. He's on iv antibiotics, and they just started leucovorin, which will help remove the methotrexate and rescue cells from chemo toxicity, if it works. This should also help his counts recover. His ANC today is 24. So, we're basicially just dealing with f&n (fever and neutropenia) - not coincidentally rather similar to s&m - and waiting for fevers to disappear entirely, counts to recover, and blood cultures are negative. The earliest we'll be leaving is Thursday, but no one is promising anything. At least, though, he's feeling much better and signs are good.

Thanks!

Tuesday, August 31, 2004 2:38 PM CDT

Wow, what a surprise we've had today, and I don't mean the good kind! Kyle has been doing well the last month, but now, unexpectedly, he must be admitted to the hospital. He had his 1-month blood counts and chemo today, in long term maintenance. We learned his ANC is 0, meaning he has no immune system working, and this afternoon he has developed nauseau, lethargy, labored breathing, and a 101.2 fever. We'll be heading to St. Vincent Childrens late this afternoon for an as yet undetermined amount of time. I hope to be able to get on here from the hospital and update more later. In the meantime, please keep us in your prayers! Thank you!

Wednesday, August 18, 2004 3:35 PM CDT

It's been a while since we updated, which is usually good news! Kyle started preschool Monday (8-16)! It's his first time back to school since before he was diagnosed last October. He seems to enjoy it, though is tired afterward. It's great for him to have more activity and be around other people. He also had a blood draw Monday, and his counts are still good. That means he stays at a 100ose of maintenance chemo, which began 8/3. He goes back to clinic 8/31, and if his counts are low then (or at any time thru maintenance), they'll reduce his meds. Also at clnic that day, he'll receive a spinal tap and vincristine. At home, he's getting two chemo drugs through his Gtube (6MP every day, and methotrexate once a week). His eating is still poor, but at least he's eating; Gtube feedings continue every night, with one or two during most days.

He saw his opthalmologist today, and his strabismus (crossing eyes) is better now that he is not so sick. Since he fights his glasses and they don't stay on his nose, anyway, and since his problems seems better, we can skip the glasses (so glad we paid for them - hah) and see how he is in six months. Now that his counts are up, we need to schedule him for his sedated hearing test, his dental appointment, and his Down syndrome clinic - all those things we put off during his frequent neutropenia. (Which will likely return now and then; we'll see.)

As a distraction from cancer (and work), I have been visited by my first, and very nasty, case of poison ivy. I was at the doctor's office today and had to take Kyle, and it was funny to see his confusion when the doctor came in and looked at me instead of him. I think he assumes all medical personnel exist for him alone. It's a perfectly reasonable conclusion, given his experience!

It's possible we will have no more news until 8/31. Wouldn't that be swell? In the meantime, please check out the information about Kyle's upcoming leukemia walk and Down syndrome walk, included toward the top of our page at the end of the intro. We welcome your participation, donations and/or prayers! Thanks!

Monday, August 9, 2004 7:58 PM CDT

Kyle is doing very well. His surgeon looked at his stoma, and was surprised to find that nearly all the tissue build-up had disappeared after just one treatment. Praise God. On the flip side, it's also re-introduced the problem of a loose tube and leakage from the stoma. They've ordered a smaller tube, and once it comes in, we'll go in to have it replaced (just an office procedure). It's hoped that will tighten the stoma up a bit and reduce the leakage and backup problems, as well as reduce the opportunity for excess tissue to build.

Kyle is loving being able to get out and about lately, even if it's just to a store. His next blood count is 8/16. That's also his first day of school, but given his history of counts crashing late and long, we feel it's safe to start school, though impossible to tell how long he can stay before his first count-induced break. On Wed., Brandon and Ryan (and Brad) are back to school, and that's Kyle's day to meet his teacher, see his room, and get registered. On the phone, his new teacher was very nice but seemed a bit overwhelmed to hear of Kyle's health problems, and said she'd be sure to have us meet with the school nurse, too, which is good. It's hard to understand the joy that Kyle brings, and how fun and relatively easy he is, when all you know is he's a kid with Down syndrome, cancer and a Gtube who can't walk and has limited expressive verbal skills. They will find out soon enough. Kyle has melted more hearts than we can count.

So far, we haven't missed a med, though I had to get up last night when I remembered one after I had already gone to bed. Prednisone finished Sun. for this month, after making Kyle higher than a kite and as hyper as any kid with ADHD. His eyes were bigger and wider than any kid's should be, especially one with Down syndrome! But he should be coming down soon, and we're left with just the 6MP, Septra, zinc and calcium for the time being, plus Gtube feedings. Kyle continues to eat some, which is helpful. If counts behave, I'll likely look into some oral motor therapy or consultation in the coming weeks.

Not much exciting to report, thankfully. How nice to drone on about details and, egads, PLANS for things. I think I'm actually planning a whole week ahead now, albeit cautiously and without any amount of confidence. I think that's perhaps how God means for us to live, anyway - in the present, with no real confidence in anything but Him. Blessings to you!

Thursday, August 5, 2004 9:07 PM CDT

Kyle started Long Term Maintenance (LTM) Tuesday! This is a big milestone, to finally complete the intensification phases that consumed his first 9 months after diagnosis. After many unexpected and serious complications all along the way, we pray for a much more uneventful 32 months of maintenance!

So far, so good. On Tuesday, Kyle received a spinal tap, spinal methotrexate, and IV vincristine. He also had a visit from his surgeon, who burnt away some of the skin build-up from his stoma (the hole for his Gtube). Not everyone has this problem, the surgeon said, but some do, and Kyle apparently does. (To which the nurse laughed and said, "oh, Kyle's used to that." Ha ha.) This procedure seems to have worked swimmingly, though we also seem to have returned to a loose Gtube with too much space around it, now that all that tissue buildup is gone. He has a follow up appointment with the surgeon Monday.

At home, he receives an array of oral (or in his case, Gtube) drugs, including prednisone for 5 days, 6MP every day, and methotrexate on Tuesdays. Some are once a day, others are twice. I'm starting a chart, since now that I'm 40 I can't possibly hold all that in my head for 32 months. Plus, it will change. As they see how Kyle handles the meds (via blood counts), he will have some delays and some reductions in or increases in treatment, til they get to the right dose for him. They also will adjust it at times he gets sick, etc. This is all meant to keep the leukemia away but let him live a more normal life, or just to confuse the caregiver, or both.

The new routine is blood counts every two weeks, and clinic once a month. It's a bit unnerving to not have constant checks and to be responsible for most of it at home. However, it's also great to not have so many clinic journeys and to know that, with some breaks and missed days or weeks, Kyle still should be able to return to preschool, which starts Aug. 16. Say your prayers and cross your fingers for him. As of now, he's still feeling really good and getting strength and energy back all the time. (Plus hair!) Praises!!

Monday, August 2, 2004 11:35 PM CDT

We are back from the beach and thank you all for your concern and messages! Kyle was quite the beach lover, and had loads of fun sitting on the sand and letting the waves wash over him. His ANC was 430 by the time we left, so he was cleared to do anything. He ate out, saw some alligators, and even began eating a bit again!! Back to french fries, oatmeal and ice cream! God blessed us so much with a happy, vibrant little boy who cheerfully woke us up at 6:30 every morning. Yay, and yawn.

Blood counts today reveal a robust Kyle ready to start maintenance. ANC is 2300, Hemoglobin 12, and Platelets 250K. So tomorrow he receives vincristine, a spinal tap, and spinal methotrexate, I think. He'll also start the oral meds that are the staple of maintenance. It is kind of exhausting to think of starting again; having a week off chemo with a near normal child was heavenly. When I mentioned chemo starting tomorrow in a conversation today, someone said with surprise that they thought Kyle was better, and I had to explain that he is, and now we just have 32 months to go if all goes well! But we are so grateful that he's come this far and that he has full cheeks and a full smile at this point. So, here we take a deep breath, and off we go again!

So, after a brief hiatus, Kyle's web page is off and running again, too. Thanks for continuing to check in. I will attempt to post beach pictures when I summon the energy to upload them.

Wednesday, July 21, 2004 4:46 PM CDT

Kyle is beach bound! His liver functions are normal again, praise God. He is very neutropenic (ANC 56), so we're taking some chances with him going on vacation, but he's cleared to go, with the knowledge that a very good children's cancer program, where our nurse practitioner used to work, is fairly close by. Here's hoping we don't need it, but it's good to have!

Kyle is feeling pretty well, and though his stoma is kind of icky, we're hopeful all will be well. When we get back, he'll likely start maintenance chemo then. So, we'll be off this site til Aug. 2 or 3, unless we have news to report, which would not really be a good thing. So have a great week or so, and pray we do too. Thanks for your love and support!

Thursday, July 15, 2004 12:43 AM CDT

Kyle is improving from his VOD liver problems, his platelets are building, and his liver is nearly normal size with normal lab results. He still has fluid in his abdomen, but that should resolve. We're grateful. Thanks for your support and prayers. Of course, we seem incapable of a completely normal clinic visit: Kyle has cellulitis again around his gtube site, and will be back on Keflex for it. He also continues to be neutropenic. But overall, things are looking up!

We may have uncovered the cause of his liver toxicity problems. The makers of PEG aspariginase notified clinics/hospitals this morning of a recall of certain lot numbers of that drug. It was 20% stronger, they think, than what was on the label. Kyle received this, and they think it may have interacted with the 6TG and caused the liver toxicity, especially since 2 or 3 other kids just in our clinic at the same point/drugs as Kyle also had VOD and/or liver toxicity. Kind of unnerving, especially since it's an orphan drug with only one manufacturer. Kyle doesn't need it anymore on his protocol, but many others do.

So far, as long as the cellulitis clears up with the Keflex and he doesn't pick up anything else, it looks like Kyle will be able to go to the beach! Hooray. Also, his hair is coming in, and he's sporting eyelashes, eyebrows, and a downy lining of soft, dark hair over his scalp. He is officially done with initial treatment, and will start 32 months of maintenance therapy either 7/20 or 8/2. The road could still have many bumps, but it's hoped things will gradually become easier. It's kind of hard to count on that, but as always, we will take one day at a time for the next 32 months (and maybe forever) and are so grateful to have come this far! Thanks, and keep checking in. Next update will likely be Monday or Tuesday.

Monday, July 12, 2004 2:52 PM CDT

Hi, all. We would appreciate your prayers for Kyle. Last week was full of platelet and hemoglobin transfusions, plus vomiting and diarrhea and retching. After his illnesses, fluid retention and stubbornly low platelets last week, he's finally been diagnosed. He has VOD (venous occlusive disease). The bad news is this can be a very serious problem, dealing with the small blood vessels in and around the liver becoming irritated and clogged, causing serious fluid issues, with a high mortality rate when it's more severe. However, Kyle's platelets are going up, his fluids have seemingly stabilized, and he's feeling pretty well now, so all this indicates he probably has a mild case, that the worst of it was last week, and that he's recovering. We are very blessed that he didn't take a turn for the worse last week before his doctors realized what was wrong. He also is neutropenic (low immunity), but that's expected and not a big deal. He's home, and we are very hopeful. He will be back into the clinic Thurs. for a weight check (the fluid causes weight gain, and how much weight is gained is a clue to how big the fluid problem is) and more blood counts/chemistries/liver profiles. We hope and pray all goes well, he continues to improve, and that Thurs. brings good news! Thanks for your prayers!

Thursday, July 8, 2004 9:25 PM CDT

Welcome to today's edition of "As the Counts Fall." Kyle is feeling better today; the vomiting and retching has stopped, thank God. The diarrhea continues, but infrequently and less in volume. He had a good night's sleep last night, thanks largely to the phenergan, so we all feel better!

Blood counts continue to be an issue. His hemoglobin is 7.8 today, so tomorrow, he'll have a red blood cell transfusion. His platelets rose from 9 to 35. This rise is good, but not what one would expect after two consecutive platelet transfusions. Perhaps this day without fever or vomiting will help those build; if not, and they're still low tomorrow, he'll likely also have a platelet transfusion. His white count is down to 1500 and his ANC to 1320: down, but not neutropenic (yet).

Thanks for your prayers; Kyle is seemingly better, though still being watched carefully. We still pray for the dimming hopes that he can go on our family beach vacation in a couple of weeks, but even more that he feels well and can end this phase of treatment positively.

Wednesday, July 7, 2004 9:39 PM CDT

Sadly, back with more news. Kyle had a fever yesterday after his chemo and platelet transfusion, and began appearing ill. The fever went and stayed down after chemo, but he started with diarrhea and gagging. Overnight, it progressed to retching/dry heaves, progressing to vomiting and voluminous diarrhea. He was in clinic all afternoon on IV fluids, and they think it's a stomach bug, though aren't sure. He had blood work, and to the surprise of all, his platelets are not up at all from his transfusion yesterday, so he had another platelet transfusion today. (This is something they've never seen before; leave it to Kyle to be different.) He'll have a nurse here at home tomorrow to draw more blood and recheck, and based on his counts, he looks like he'll also need another red blood cell transfusion and his heading toward neutropenia, but we'll see. The crashing counts are just a part of the chemo reaction from 2 and a half weeks ago; it's the stomach problems and the weird platelet thing that's most concerning. Kyle got a nausea drug that has helped tonight and allowed him to fall asleep, so here's hoping we all sleep better tonight!

In other news, Ryan is safely at camp and was having a great time even before I left. No mixed feelings for him! Brandon is staying the night at our friend Anita's house; many thanks to her. Sleep is calling.... More news tomorrow, if I can.

Tuesday, July 6, 2004 10:00 PM CDT

It's been a long weekend, but we were so glad to be able to visit grandmas after much time spent at home with neutropenia in the past. Kyle's hemoglobin was low (7.5) Thurs., so he had a red blood cell transfusion Friday. Over the weekend, despite the fun, Kyle developed petichea (broken blood vessel under the skin blood spots), a sure sign of low platelets. Sure enough, at his clinic visit today, his platelet count was 9K, which is incredibly low. He had platelets today, plus his vincristine and PEG aspariginase shots. He felt fine this am, but developed nausuea, fever, and general feeling crappy this afternoon. However, since his ANC is up to 3,400 (!), he did not have to be admitted to the hospital, thankfully, and was allowed to have Tylenol at home, which has helped a lot.

His white count and ANC is up, so it's possible he won't get neutropenic this time. With any other child, that would seem to be the case, but with Kyle, he still has time in his atypical mode of operandi to crash. We'll see. The prize at the end of the string is still the beach vacation later this month; still iffy. In other good news, Kyle is now up to 30 pounds!! Gtube and Pediasure are sure doing their trick, and Kyle's general health is much better as a result.

I must crash myself, as tomorrow AM brings an early trip to Brown County for our middle son Ryan's first camp - church camp. How blessed we are to have two children well and vibrant enough to go to church camp, have fun, and learn more about God. (Brandon will go next week.)

Kyle's next clinic visit is next Tues., with blood counts inbetween on Thurs. Will keep you posted with any news, though I'm kind of hoping there is none! Next Tues. is a banner day: Kyle's last day of delayed intensification! Then on to 32 months of maintenance. We're getting there!! Oh, and check on two new photos in the photo album.

Monday, June 28, 2004 2:59 PM CDT

Kyle had his second weekly clinic visit of this phase, with a spinal tap and spinal methotrexate, plus ARA-C, which we'll continue at home this week. He's also on oral 6TG for the second week. He's gaining weight rapidly now, and is up to 29.2 pounds (!), so they're cutting back his calories a bit to about 1,200 per day. They don't want him to get to roly poly to move! He's also getting fiber for his feeds, to help bulk up stools and discourage diarrhea.

He has been very happy and relatively well, with much more energy, which is a great blessing. His counts should crash in a couple weeks, but we are enjoying this time while we have it. He even was able to go with us to Holiday World Thurs. It was his last day to receive ARAC, which is an IV drug I push at home, so I gave him that in the car on the way down, flushed it, and took his port needle out. If you'd told me I'd be giving chemo in a car someday, I never would have believed you. It's amazing what you can do if you need to. Anyway, we had a great time, and Kyle loved the fish ride and the canoe!

Thanks for checking in!

Tuesday, June 22, 2004 3:21 PM CDT

Sorry I haven't posted lately. Kyle started chemo Monday. The clinic folks decided to give him a bit more time to feel better from his virus and cellulitis, and it certainly worked. He spent the weekend feeling very well and happy! Brad and I actually got out with our Gaslight Theatre friends over the weekend and for our 17th anniversary Sunday. It was a nice break for us all before we slammed headfirst into the routine Monday.

Monday was one of the two longest oupatient chemo days of the whole protocol. He was there for nearly 8 hours of cytoxan, spinal methotrexate, spinal tap, ARA-C, and home 6-TG, plus a bladder rescue drug. Once home, he was exhausted, slept on me, and then vomited after waking. He also vomited this AM, but Zofran (the antinausea drug) is holding the nausea at bay nicely. He continues to have diarrhea, so we are stopping his antibiotic and checking for C diff again, and if it's neither of those, will consider the possibility of the sugars in his Pediasure feedings being the cause. In addition to the diarrhea being a problem for him directly, it's also causing a very bad diaper rash that is healing but reopens with diarrhea, and which poses an infection risk, particularly when his counts drop in 2-3 weeks.

Sorry. If you're not a parent, the above paragraph was probably pretty disgusting to you. (When you become a parent, you'll discover you discuss your child's bodily functions with the same abandon that you now discuss things like what you'll eat for dinner tonight.)

We are planning an amusement trip journey one day this week, and Kyle is cleared to go! Less certain is whether he'll be able to travel to our beach vacation about a month from now. Now 8 months into Kyle's treatment, we continue to take a day at a time, with perhaps less patience and serenity, but still with a sense of humor, and always with the amazing love of Christ. Have a good week, and know that I'll try to update after Kyle's clinic days in the next month, which will be on Mondays.

Wednesday, June 16, 2004 4:30 PM CDT

Kyle's chemo has been delayed again, and is now scheduled to occur next Monday, 5/21. He is getting better, but they want him to have more time on the antibiotics, especially since last night, he developed some stridor (croupiness) in breathing. Our heroic and wonderful clinic staff went above and beyond to get Kyle the meds and mask he needed for his nebulizer to have home breathing treatments (including a home delivery!), and I'm quite sure that saved us a trip to the emergency room. The breathing treatments, while probably on Kyle's list of top 5 most hated medical procedures, nevertheless did the trick, and he slept well for the first time in days and days. Today, he's much better, but still a little junky in the airway, so they want him to have a few more days to get well. I suggested to his oncologist that we'd be bringing him in to "hammer" him with chemo, and he remarked that for most kids, it's a hammer, but for Kyle, it's more like a sledge hammer. So if you're dreading your next workweek Monday, just count your blessings next Monday and say a prayer for Kyle. Thanks! Meanwhile, we're hoping he can have a truly good weekend.

Monday, June 14, 2004 11:07 PM CDT

Hi, all. Thanks for your concern about Kyle. I took him into the clinic today. Last night the fever was 103 under the arm and the coughing was incessant and causing vomiting, plus he had very red skin around his Gtube stoma. He had a chest Xray, blood counts and blood culture. He has bronchiolitis, but that and the cough (and at least part of the reason for the fever) is likely due to a virus. No pneumonia, thankfully. However, he does have an inflamed eardrum, and the red skin around the stoma is cellulitis, which I figured. So, he had IV antibiotics in the clinic today, and is home now on augmentin orally/thru Gtube. Last night I slept in his room, or rather stayed in his room (not much sleep), but so far tonight, with the cough meds in place, he seems to be sleeping much better. He still is in pretty good spirits when his fever and/or cough isn't getting the best of him. His fever is still high but reasonably controlled with ibuprofen (okayed due to fine platelets). ANC is holding up at 1,500. His neutrophils had what they call a "left shift" (always learning something on this educational roller coaster ride), which means he's shooting out immature neutrophil bands, which is indicative of an infection. But they fully expect the antibiotic war to do its trick on the infections, the virus to run its course, and hope Kyle will be ready to start the second half of DI, with a full day of cytoxan/fluids, this Thurs (!). Of course, we also hope the antibiotic arsenal won't kick the c. diff. infection into action again, but hopefully, his ANC will do its job in that regard.

If it helps, think of this as a war. The neutrophils are the good guys, fighting infection, joined by their allies, the chemo, which fights the major enemy, leukemia. Of course, allies always present some diplomatic problems, which is akin to the chemo also sometimes killing healthy cells. The leukemia is the number one bad guy enemy. Infections, including the cellulitis, ear infection, viral illnesses, and c. diff. infection, are like terrorists, breaking down the good guys and causing them to scramble to respond effectively before the enemy is allowed to encroach, the terrorists take over, or the allies get out of control.

And as the saying goes, war is hell. Thanks for checking in!

Sunday, June 13, 2004 1:05 PM CDT

Hello! Kyle finished the flagyl antibiotic for his c. diff. intestinal infection, and that seems to have cleared as of now. In fact, he had been feeling pretty well, and his counts were holding up at respectably normal levels(for a chemo kid), with plans to have one more blood count and chemistry check Monday and tentative plans to start chemo later this week. Those plans may hold up, despite our most recent hiccup. Kyle has a 103ish fever and cough, which started Friday, but no pneumonia yet. We're keeping an eye on him and giving him ibuprofen, ok'd due to his fine platelet counts. He's not neutropenic as of last Thurs., so if he needs antibiotics, he may be able to have them at home. But as of now, it seems to be a virus. We hope and expect (with as much confidence as we can muster at this point, which is about equal to the confidence of a 15-year-old on his first date) that this will clear up on its own. Sigh. If it's not one thing, it sure is another! Nevertheless, we are glad to be home and glad to see Kyle still alert and smiling, fever and all.

Tuesday, June 8, 2004 4:35 PM CDT

Kyle's cheeks are getting fuller, and not from fluid. He is tolerating the 24-hour Gtube feedings well, and sometimes eats other things, too, and sometimes won't. We are glad to see him feeling better and gaining weight. Thanks to the many women who have offered to share some of their extra weight with him; if only it were that easy!!

His main blood counts, taken Mon., are good (Hgb 9.0; WC 3.4K; ANC 1428; platelets 317K). However, his protein and albumin are still low (4.8 and 2.4, respectively). Not sure why that is, though I know protein is slow to build, and albumin is tied to protein. Given the major problems the low protein caused after the last round of chemo, he will remain off chemo until his protein levels rise to a normal level (normal is 6.0 - 7.8).

Blood counts will continue Thurs. and again Mon., and we should have a better idea of a restart date for chemo next week after Monday's counts.

We are so thankful to see his personality returning along with smiles and even laughs! It's been quite a while since we've seen that. He remains very weak; unable to crawl, move from lying down to sitting, or anything more. These skills should return, but it may be a while.

Hope to post pics of his room soon. If anyone has found a way to get 36 hours or so out of a day instead of 24, please share; we could use it now!!

Thursday, June 3, 2004 12:23 AM CDT

Kyle's trip to the surgeon resulted in a welcome "wait and see" result. No need to change to a smaller gtube, as we had been told by the other surgeon; in fact, that could push his stoma (stomach hole) open wider. It's wide enough already, as it's not healing well, enlarging and is kind of an open wound. But with his white counts up to respectable levels (3.2, or 3200) and his ANC up to a nice 2,400, and with no chemo planned for at least two weaks, he has a chance to heal for a while, so we'll see if he does. If not, he may need another surgically placed tube, but we'll cross that bridge if we need to (and hope we won't). Meanwhile, a really nice wound care nurse talked to us and gave us creams to put on the bleeding, leaking hole to help it heal. (She was soft and chubby and had a soft, soothing voice like Mr. Rogers - I darn near crawled into her lap and fell asleep right there.)

Kyle got his new Suite Dreams room yesterday, and it is so cute. When I get a chance, I'll post a picture here, but probably not today. He slept in his big boy twin bed without a hitch, and actually fell and stayed asleep, so I am now semi conscious, too. He looks so cute in that huge bed, especially since he's really no more than the size of a pillow himself!

He continues on 24-hour gtube pump feedings, and meds 4 times a day as of now. The diarrhea is still present, but only 3-4 times a day, and the cramping is much improved, so I think and hope the c. diff. is on its last legs. Kyle will get blood counts again on Monday, and we'll be able to see then if and how much the constant feeds are improving his nutritional levels, plus make a tentative plan for when to start chemo again.

Now, back to the work I am much behind on!

Tuesday, June 1, 2004 10:58 PM CDT

Kyle returned home this evening! He has c. diff. intestinal infection, is being treated with antibiotics, and is on 24-hour gtube feedings with calcium and zinc supplementation. He still has diarrhea but it is improving a lot. He is very happy to be home but screamed and cried for about 3 hrs before falling asleep tonight. (Last night in the hospital, he didn't sleep a wink.) In the hospital, we allowed him to watch videos late in the night to calm him. Tonight, we resolved not to do this at home, so finally resorted to the kiddie equivalent of a sleeping pill: Benadryl. So now we're guilty of plying our child with TV and drugs, but hey, desperate times call for desperate measures.

Anyway, we remain tired and are wearing our virtual nurses' hats, but are so glad to all be home together. He will have at least two more weeks off chemo as we attempt to increase feeds, beat the infection, and restore him to better weight, nutrition and health before venturing into the grueling last half of DI on 1961c. Tomorrow, we go see our regular surgeon about the gtube problems, as we didn't see any in the hospital today. Also tomorrow, Kyle's new Suite Dreams room gets delivered! So he will be recuperating in style. Thanks to you all for your positive thoughts and prayers. Kyle needs them still as he works to beat his infection and build the weight and nutritional levels he needs.

Monday, May 31, 2004 1:47 PM CDT

Happy Memorial Day! We are still in the hospital, St. Vincents, room 3017. No cookouts for us today. Kyle is improving on many important fronts, but having more problems in one regard that could be easily fixable, or could be a big problem.

On the good news front, his white counts are steadily increasing, and his ANC is a whopping 1,152 today! This indicates he's recovering from the chemo, and that the nutrition we're giving him is beginning to help, too. It also means he's no longer neutropenic. He also is much more alert and able to speak some and sign, and just interact again, which is a big relief.

Now on to the concerns of the day. Despite his other improvements, Kyle has developed fevers and severe diarrhea, gastrointestinal pain, sleeplessness and some vomiting. That is why we are still at Hotel St. Vincent. His onc says his symptoms are classic of a bacterial tummy infection called c. diff., for short, and we sent off for a lab analysis of a stool sample, which Kyle was able to supply plenty of. (Yum.) Today, however, we learned the lab techs who can run the test for c. diff. are off til Tues. (I find this a bit strange that no one runs special labs on Sundays and holidays; I mean, isn't this a hospital? but oh well.) However, since Kyle is in quite a bit of distress, especially at night, and his symptoms are so classic, he's started an antibiotic that can treat c. diff., even though we don't have the diagnosis yet. If it is c. diff., the antibiotic should do the trick in a day or two, and we should be homeward bound. If it's not an infection, however, Kyle likely has some very significant intestinal malabsorption problems, which would be very bad considering his malnutrition and abysmal levels of protein, calcium, zinc, iron, etc. He continues to have fluid retention/swelling from the low protein. But he's on 24-hour Gtube feedings, which (if we can get the diarrhea stopped) should send him on the road to recovery in a steady but tortoise-like pace.

Kyle is halfway through delayed intensification now. His onc says it will be a few weeks before they would want to resume chemo, as the next 4-week phase is very intense, and frankly, it would probably kill him at this point. (Which I'm sure would break that "do no harm" pledge they take.) But they're comfortable he's had enough therapy to keep the leukemia at bay during the delay.

Tomorrow, his surgeon should be back and able to look at and, if necessary, replace his leaking Gtube. Still no time to tell about the fiascos we had with the other surgeon, but suffice it to say that after he failed to show up to measure, select and replace the existing tube twice, and twice talked a nurse through the procedure on the phone (with the nurses failing, at no fault of their own, each time), I said to tell Mr. Surgeon that if it was an important procedure for Kyle, he could come in here and do it himself, and if it could wait til Tues., we would just wait for our regular surgeon, thank you very much.

As I write this, Kyle is enjoying his first good nap in a few days, and we remain pretty positive through our one moment at a time philosophy, the joint efforts of family and very close friends, the prayers of all of you and more, and of course, the grace of our Lord Jesus Christ. (Not to mention a healthy dose of sick humor.)

Friday, May 28, 2004 9:55 PM CDT

I'm leaving in last night's post since it tells why we're in the hospital and it hasn't been up very long. But the latest good news of the day is Kyle's white count is up to 700 and ANC is 42. This morning, the onc even thought we might be able to nurse his feeding/protein increases at home if his ANC continues to rise, even as early as Sun. But most of the day today, Kyle has been battling major stomach distension, diarrhea, gastric pain, and nausea. Below is the rest of the story, from yesterday.

Hello. It's been a few days since updating in this very busy week. As of now, Kyle is in the hospital. On Wed., he developed frequent vomiting, severe lethargy, and eventually, a fever. He was admitted around 9 p.m. Wed. He doesn't have an infection now, but is nevertheless on IV antibiotics to ward off the very real possibility of one. He has not vomited since Wed. That's the good news; now for the not so good. Kyle is feeling very, very bad, and is sleeping much of the time. His ANC is 0, and his hemoglobin dipped to 8, but he was transfused today, so that's fixable. More troublesome are his low levels of electrolytes, protein, albumin, sodium, glucose, iron, zinc. These low levels not only make him feel bad, they cause fluid leakage out of the blood vessels into the rest of the body, creating problems with fluid retention, etc. We are hoping that by getting him back to full strength Gtube feeds, those levels will improve. (He won't take anything by mouth right now.) They so far have given him a day of half strength formula, and he's now on a day of full strength formula at 40 ml/hr. The goal is to increase the rate by 10 ml/hr every day until we get to 60 ml/hr, continuous feeds until he feels well enough to drink and to get some calories from food he eats. It is hoped he can handle that without vomiting, plus absorb the nutrients well enough to help him. If either of those things don't work, we may be back to trying IV nutrition, but we'll see. His onc good-naturedly said he's "a mess" and that they're not fully sure what's wrong and what to do, but we'll do our best. He'll likely be in the hospital until early next week at the earliest, possibly later. The onc said that though none of his various problems are currently life threatening, they could become so pretty quickly, and it's best to keep him here, and get him to a point where he can be released with confidence that he should not have to come right back in. He's also having problems with leaking and bleeding around his Gtube, and after a failed attempt to address that problem tonight (long story), a surgeon will be in tomorrow to do something. More updates will come as we can; thanks much for your loyalty in checking and for your continued prayers!

Tuesday, May 25, 2004 7:17 PM CDT

You know you're experiencing some unusually "exciting" times when every staff and MD who sees you in the cancer clinic remarks that you're having "quite a time of it" lately, or similar. As I wrote in the last post, Kyle's tube came out Sat., courtesy of our dog, and he had a temporary one put in, in the ER. On Sunday, Kyle was bleeding thru his stoma, but that stopped. On Monday, he received a "button," which is a port-type thing that sits close to the skin and stays in the stomach on the other side courtesy of a water-filled balloon, which we empty and refill every week or so. We attach the feeding tubes to the "button" when we're doing feeds, and remove them when we're not. This is quite handy, though the original plan was to put this in after Kyle's stoma (stomach hole) had healed in a couple of months or so. Now, he has it, but his stoma is far from healed and actually larger, so we're just trying to keep it dry and pray it heals, though the onc clinic staff say it will be a couple of months before he can heal well, due to his counts. (How's that for a run-on sentence?) Meanwhile, Kyle continues to have lots of leakage and, today, kind of large amounts of what I can only describe as vomit pouring out of his stoma, particularly when he cries. So much for keeping it dry.

Today, in the continuing saga, I sat Kyle on the floor and he fell over, hit his head on the end table leg, and got a pretty deep gash in his bald scalp. (At least we didn't have to shave his head to see it.) I took him in, and he got steri-strips put over it and oral Keflex to help fight infection, but the steri-strips (that were supposed to stay on at least 7 days) mysteriously disappeared about 5 hours after he got them. The nurse prac. on call said the bandaid I'm using should be okay, but in the morning she'll check with the people who actually saw and treated it today, and they'll call if I need to do anything else.

As for his counts today, his platelets are good (309K), hemoglobin okay (9.7), and white counts awful (.1K, or 100). His ANC cannot be calculated with white counts that low, but we can consider it to be 0. How he will avoid infection with no ANC and an open, oozing stoma and an open gash in his head will be a challenge only God and Keflex can address. Meanwhile, Kyle feels pretty awful and is very weak, and is going through many shirts and sheets a day due to the leaking stomach contents. (I'm going through about 3 shirts a day myself from holding him.)

Tune in soon for the next edition of "As the Stomach Turns." Cheers!

Sunday, May 23, 2004 5:20 PM CDT

We had a scary thing happen Sat. that nevertheless has a bit of humor to it. When our dog ran in from the backyard, he ran right into the tubing connecting Kyle's pump to his Gtube, knocked it over, and forced the Gtube to pop out of Kyle's stomach. This resulted in a call to 911, after which the bleeding stopped so we sent the paramedics home, and then rushed Kyle to the ER to get his stomach hole filled with a new tube before the hole closed, all the while trying to avoid infection in this very neutropenic and sickly little boy. Thankfully, we received a temporary tube and got to return home without surgery. He'll get a more permanent "button" tube sometime this week, hopefully in the clinic as outpatient. It was kind of harrowing, but the nurses/docs found some humor in "the dog did it" story. And even in the midst of a difficult time, I too find myself smiling at what will forever be known as "the dog got the Gtube" story.

Kyle is battling diarrhea again, a terrible thing for his weight and malnourishment problems. He feels awful, and today has a bloated tummy, a very bloated area where his liver is, is sleeping about half to 75 percent of the time, has broken blood vessels on his eyes, etc. Brad and I wondered if we should take him in today, but the onc suggested watching him and calling again in Mon. morning, since he has no fever. He also suggested giving him half-strength Pediasure again, even though the last time brought on more diarrhea. This time, though, we're pumping it slowly instead of giving it quickly, so that may help.

It's an exhausting time for Kyle and for the rest of us, but we're grateful to be home, for the love and prayers of family and friends, and very grateful to have been able to have Brandon's 11th birthday party Sat. despite the morning shenanigans.

If you haven't checked for a while, more news on Kyle's counts, etc, are on the Friday 5/21 page.

Friday, May 21, 2004 3:11 PM CDT

Hi, all. Kyle's diarrhea and vomiting have slowed a lot, and we're reintroducing some food today. He had chemo this morning, which is his last chemo of the first 4 weeks of delayed intensification. The second 4 weeks of DI will commence after his counts recover, which will be at least a couple of weeks or more. He is feeling pretty awful today, sleeping a lot and otherwise content to lie on the couch. His blood counts are, as I suspected, plummeting, and he is thoroughly neutropenic now. They also suspect he will need a red blood cell transfusion next week. For those who find it interesting, his counts are:

Hemoglobin 9.6 (10.6 two days ago)
Platelets 213K (228 two days ago)
White Count 300 (1,900 two days ago)
ANC 15 (1,700 two days ago)

As those of you in the cancer world or who have been following our little saga a while know, an ANC that low means Kyle can catch an illness right now about as easily as Marvin Harrison can catch a football. (My apologies to non-Colts fans.) And, because he already feels bad and is so small, and because the steroids he's on can mask a fever, we've been directed to call and plan on a hospitalization and IV antibiotics if he gets any type of fever or even becomes very lethargic. I was advised to pack a bag, which I fully intend to do, because any other time I've packed a bag in advance for a possible hospitalization, the hospitalization never became necessary. So I think I'll pack the biggest damn bag I can find.

Despite the dubious nature of this news, it's not catastrophic. Kyle feels bad, but he's just bound to feel bad during delayed intensification; it's the toughest part. And neutropenia doesn't always land him in the hospital; in fact, he's stayed home through many bouts of it. Of course, he hasn't gained much weight or protein yet, and now we're having to cut and dilute his feedings as he recovers from the diarrhea, which won't help, but nonetheless, I feel no sense of grave concern; we'll just be sure to keep Kyle at home and pray for the best. We continue to be wrapped in your prayers and love, and most of all the love and grace of Jesus Christ. (Plus we've become too tired and insane, in addition to our faith, to worry too much about stuff we can't control.)

Have a good weekend, and pray we can continue to provide these updates to you from HOME.

Thursday, May 20, 2004 10:07 AM CDT

Kyle is suffering from diarrhea and vomiting today, is feeling very bad and tired, and is on pedialyte via Gtube. Thank God for the Gtube; otherwise he would likely be on IVs for dehydration. We hope this settles down and goes away on its own, and then we'll slowly reintroduce food and nutritional supplements.

Kyle's blood counts are drifting down steadily but still in decent ranges as of yesterday. He has chemo (adriamycin and vincristine) tomorrow, Friday.

Tuesday, May 18, 2004 1:45 PM CDT

It has been a few days since posting! Kyle is doing fairly well, though not feeling great and very tired. His counts were fine last week. The steroids make him very moody and uncertain of what he wants, prone to crying fits, and also unable to sleep for any length of time. The high-dose steroid therapy is part of the chemotherapy and lasts for 21 days, til about the end of May. We both will be very glad to get May behind us.

His counts should be dropping soon from the adriamycin he's getting this round. He'll get a blood count Thursday and more clinic chemo Friday. On Thursday, his Suite Dreams room repainting and furniture delivery is scheduled. (Later update: that has been rescheduled for June 2.)I'll be sure to post a picture of the room when it's all done.

Kyle is starting to pick up a bit of weight from the tube feedings, though it's hard to know what's him and what's the fluid retention from steroid therapy. After going through four pumps last week, we finally found one that works, so he's at last getting full calories from food, day tube feedings, and night pump tube feedings. We hope this will improve his nutritional status and give him the strength he needs for this particularly grueling phase.

We so appreciate your continued prayers. Thanks!

Monday, May 10, 2004 10:45 PM CDT

Kyle's PEG shots went well today, and he had no allergic reactions, which can be a problem. He also saw his ENT doc today, a wonderful woman named Ronda Hamaker (if you need a pediatric ENT in Indianapolis). Kyle's one tube is out and the other is all but out. They want him to have OAE and sedated ABR hearing tests to get an accurate picture of his hearing, which is okay since it just requires conscious sedation (which Kyle has a lot with his spinal taps anyway), but we'll have to wait for his counts to drop and then go back up, so that's a few weeks away.

Kyle is not eating much at all and is very, very fussy, almost frantic. The mood problems are probably due to the steroids. The steroids should also make him very hungry, but so far that hasn't panned out. Since he hasn't gained weight thus far with the Gtube, they're upping his calorie goal for each day to 1,500 from 1,100. A few days ago, that wouldn't have been a problem, but as it is now, that's a pretty lofty goal. Fortunately, we received a new pump and bags/tubing for night feedings. The first pump's bags kept breaking and it took about 20 to 30 minutes to get ready, which was wearing on my already thin patience. A couple of nights of swearing at the bags with tubing led me to request a different pump system, which came today and which was ready in 4 minutes. Hooray. It has occluded (blocked) a bit tonight, but I hope that won't be a continuous beeping (not bleeping) problem.

Thanks for checking in, and thanks to those who have signed Kyle's guestbook. It's always nice to see. Kyle's next chemo and blood count is Friday, so I'll update then if not before. God bless you!

Friday, May 7, 2004 11:57 PM CDT

Kyle started delayed intensification (DI) today, right on schedule. This was made possible by the major reductions of methotrexate in interim maintenance, which Kyle couldn't tolerate. But DI is viewed as the most important stage of treatment in preventing relapse, so he is fortunate to be starting that on time.

Of course, fortunate is a relative term, as he now has adriamycin (dauxorubicin), vincristine, and intrathecal (spinal) methotrexate wandering through his veins, as well as steroid and antacid and antibiotic through his gut. One of the lovely fringe benefits of the G tube is that he needn't take those nasty oral drugs orally; we can just dump them into his tube and right into his tummy. So, no more medicine battles for now! We thank God for all gifts, great and small, and on a day where Kyle is spitting and throwing his medicine, this gift would seem great indeed.

His weight and nutritional levels are unchanged, unfortunately, but it is perhaps too soon after surgery to tell if this is a problem for sure. Within a week we may up his calories; will meet with a nutritionist next week. He is, however, feeling good. Of course, today we received all sorts of warnings about his impending counts crash, leg aches, anemia, steroid irritability, fevers, potential hospitalizations, etc. that are likely to come with this particular round. However, in our one day at a time regime, he's feeling good right now. That's the story now, and we're sticking with it until things change.

Monday Kyle returns to clinic for PEG shots in his leg (another form of chemo). He then will be in the clinic for chemo every Friday for the next three weeks. After that is four more weeks, to begin when his ANC is 750 or more, which may take some time at that point. Oh, but wait, that's a month away, so I'm definitely breaking my rule. Wasn't the weather in Indiana nice today?...

Thanks for checking in. We appreciate your continued prayers for Kyle as he journeys through this phase. And to all of you moms out there (particularly you cancer kid moms): Happy Mothers Day!

Thursday, May 6, 2004 3:41 PM CDT

Kyle's counts have rebounded dramatically in just three days! Here's the rundown:
White Count 4.2
Hemoglobin 10
Platelets 413K
ANC 1,554!

So, wasting no time, we are off to the clinic tomorrow (Friday) morning to start delayed intensification. He'll have a spinal tap, adriamycin, vincristine, and start steroids again at home(oh boy). Adriamycin can be the nausea culprit, vincristine the constipation culprit, and steroids the rabid appetite/irritability culprit. Then next week he'll go in Mon (I think) for PEG shots, and then it's every Friday for a while.

Kyle is feeling so much better. The G tube feedings of Pediasure are seeming to do their trick. His appetite is much better, and he's eating more by mouth, so we usually only need about three tube feedings a day to make up the difference. However, it's nice to have the flexibility of additional tube feedings and/or the overnight pump for when his appetite goes down thanks to the chemo (though the steroids might have a say in keeping him eating; we'll see). Anyway, we are grateful to have the nutritional support. I'll know more tomorrow (Fri) about his weight and protein levels, etc.

It is great to see our little sunshiney guy return at last, and thus really hard to think of taking him back in for the most intense chemo he's seen since induction.

Thank you for your prayers. We can't express how much we appreciate them and FEEL them! I'll update again tomorrow, I hope.

Monday, May 3, 2004 2:04 PM CDT

Kyle's counts today were (for the medically inclined): White count 2,000; ANC 480 (neutropenic); Hemoglobin 10.4; Platelets 321K.

His neutropenia was unexpected, but could be due to the stress of malnutrition and the surgery. If so, it should go up pretty soon. They'll draw labs again Thursday of this week to check his progress, and then again next Monday with the hope of starting delayed intensification next Tues. May 11. (If his ANC had been 1,000 or more, it would have been tomorrow, May 4.)

Kyle's doing pretty well with his tube feedings and his color is much improved. He's on an 1,100 calorie per day goal diet. He gets Pediasure in his tube feedings, at day by bolus and overnight by pump. The amounts of the feedings are flexible based on his daily oral calorie intake, which varies. This should be a great thing for him and a relief for us, especially on those days where he will eat and drink next to nothing!

He had been feeling much better but seems to feel not too well in the last day or so, probably due to low counts, plus he is battling a cold or allergies, too. We hope and pray things improve a lot for him.

His room is painted, including a nice animal/sea mural, but the addition to this idyllic picture of Jesus lounging in the water on an inner tube marked with the words "Life Savior" has produced many giggles in the DeHoff household. We understand the intent, but as our friend and pastor's wife pointed out, he looks like he's river rafting and kicking back ready for a beer. Plus my first thought was what the heck does he need to sit on a lift raft for; He can walk on water! More importantly, Kyle will not understand the picture or the play on words, so we're asking that it go away, though we will miss the mirth it provides to all who visit.

I'll update with counts again Thursday, and appreciate prayers that Kyle's health and feelings of well being will again and continue to improve.

Friday, April 30, 2004 4:30 PM CDT

He's home!! Kyle returned home from his week of hospitalization today, Friday! He did very well with the pump feeding overnight. He is still pretty sleepy and weak, but nonetheless is improving steadily and seems to have better color. We'll do 10 hours a night of tube feeding with the pump, plus three or four "bolus" (quicker, manual administration) feeedings per day, to be adjusted according to Kyle's other calorie intake during the day. I've never been much for calorie counting; maybe this will get me in the groove so I'll start eating better, too! We are just getting into this now; in fact, the pump supplies delivered were the wrong kind, so we're still waiting to get the stuff and instruction from home care. But it should all work pretty well, and we thank God and you (for your prayers and concern) to have him home and improving after surgery. Kyle will continue to have this PEG tube for about 2 and a half months, at which point they'll go back in to insert an easier method of feeding at the same site (a "button") or, if he definitely won't need it again, take it out. I tend to think they might choose to keep it in, but it's hard to say at this point.

We'll keep you posted. Plans are for blood counts Monday and, if all systems are go, delayed intensificiation chemo will begin next Tuesday. We should get an idea of how his nutrition levels and weight are responding then. We pray his new nutrition assistance provides better health and energy and resilience for this next, intense phase of chemo and beyond.

Thanks so much for your prayers, concerns, and messages. It's really very helpful and appreciated.

Thursday, April 29, 2004 12:48 AM CDT

Hello, everyone, and thanks for your prayers and concerns. We finally have email access at the hospital. Kyle's surgery went well yesterday. He had some upper airway problems in the evening, but no collapse, and all was fixed with breathing treatments. He fell asleep last night with quiet tears streaming out of his eyes and looking very sad; it was kind of heartbreaking. He's had some pain and fits of pain-related crying today, which may be due to surgery pain or to gas from the newly begun G-tube feedings, which started this morning. He's had two tube feedings so far as of now; the first caused a lot of pain, but for the second one, I was able to give it, and I gave it slowly over about 20 minutes, and that seemed to help quite a bit, though he still seems uncomfortable.

The plan as of now is for him to return home Friday at some point. He'll have four tube feedings each day, plus regular food, to add up to about 1,100 calories each day. Tonight, we're trying a 10-hour slow drip of about half of the supplement ounces he needs each day, which would reduce the amount he needs at each quick daytime feeding, since that seems to be causing some pain, but we'll see how it goes. They're a bit concerned that he'll wrap himself up in the tubing connected to the drip pump during his sleep.

Plans are still to start delayed intensification chemo next Tues. 5/4, but we'll have to see how his counts hold up. We continue to take things a moment or maybe an hour at a time, but we are very grateful he got through surgery without needing vent support after surgery or intensive care. Thank you so much for your prayers! We'll keep you posted!

Tuesday, April 27, 2004 10:24 PM CDT

Hello! I couldn't figure out how to get on email with my laptop at the hospital, but we are home briefly tonight, so I'm updating you now. Still hope I can eventually work that out, as we're likely to be back hospitalized for the rest of the week beginning tomorrow.

As you may remember, Kyle was in the hospital beginning Monday afternoon to start TPN, also called hyperalimentation (a nutrient bag), added through his veins via his loose port. Kyle did fine with it Monday evening and overnight, but this morning, he yanked on it pretty hard, pulling it out of the port, but not out of the skin, causing the fluid to infiltrate around the port. We caught this in plenty of time, but Kyle is likely to continue to yank on it despite our best efforts, which would likely result in several clinic and ER visits and could be very dangerous if it happened at night when he wouldn't be closely supervised. However, Kyle needs the nutrients to survive (his surgeon took one look at his protein levels and pronounced them "awful", plus he has lost even more weight and is now 24 pounds), and his nutritional strength is especially important for the delayed intensification chemo phase that's coming up, scheduled to start next week, and that lasts for two months.

The best alternative for nutritional supplementaton is a G-tube, which is surgically inserted directly into his stomach, with a tube ouside for feeding the nutrient solution into the stomach. Tommorrow, Kyle will have surgery to place the G-tube, as well as to tack down his loose port since they will have him under anesthesia, anyway. Of course, surgery is a risk to Kyle due to his "noodle" airways (easily collapsible), so he has a risk of airway and/or lung collapse, like what happened when he first had his port put in. He also risks infection. However, they are prepared for these situations with some preventive measures as well as having all the equipment they need at the ready, plus he will be on antibiotics.

The good news is that Kyle is not neutropenic now, with an ANC of 1,020. This should stay up, and if so will help him ward off infection and heal from the surgery.

Thanks for your concern and prayers for Kyle and our family. We appreciate it so much. We ask for your continued prayers for him in the coming days. Thanks so much!

Wednesday, April 21, 2004 5:27 PM CDT

I'm keeping the info below from 4-21 since it's all true and informative, except now, on Fri. 4-23, we know that Kyle will hang in there til admission Monday, and the time has changed to 2 p.m. so Daddy can be there, too. Kyle will probably be there til Wed. or Thurs., more likely Thurs.

Kyle's clinic visit was long yesterday, as he had trouble arousing after sedation and just wasn't feeling well, and had stool cultures and blood chemistries (labs). Otherwise, it went well, and he finally woke up! We went home awaiting news about whether Kyle's diarrhea, lack of appetite, weight loss, fussiness, etc. was due to infection or malnourishment or neither. Lab results definitely suggest malnourishment, which can result from chemo and its related lack of appetite/food aversions, and which Kyle is especially susceptible to given his existing oral/motor and feeding difficulties. His albumin, protein and zinc are very low. Malnourishment also can cause diarrhea, because it can make it difficult for the intestines to absorb nutrients, making malnourishment worse, etc.

To reverse this nasty process, Kyle needs nutritional supplementation. To start with, he'll get TPN, which involves nutrition given through his port into the veins. This will be done at home eventually, but needs to be started in the hospital. Due to our schedules, if possible, we're waiting until Monday for this, which will put Kyle in the hospital beginning Monday around 11, for a stay of 2-3 days, more likely 3. I'm not sure how long that will continue at home, but it's a short-term solution. The hope is it will improve his nutrition to the point where he'll eat well and absorb nutrients, but there's still possibilities of appetite stimulants or feeding tubes (NG, G or J). But I'll save the details of that til we know what comes next. Our cancer mantra is back in full swing: one day, or one moment, at a time.

While this is obviously not terrific news, it's not all bad. Kyle has obviously been feeling bad, and malnourishment can make it hard for the body to handle chemo and for cells to repair after chemo's cellular damage, which can lead to some rather grim consequences. So we're glad to have caught this and be doing something about it, to give Kyle the best chance at both feeling better and battling leukemia successfully.

I'll try to keep you posted. Not sure if I'll be able to post while at the hospital or not, but I think so. We go in Monday at 11 a.m. unless Kyle takes a turn for the worse and needs to go in earlier, but we don't expect that.

Thanks so much for your prayers. We feel a sense of trust and acceptance that can only come from God.

Monday, April 19, 2004 10:54 PM CDT

Kyle is neutropenic today, which I found out shortly after we returned from a trip to the zoo with his preschool friends. Obviously that trip would have been contraindicated, but he had fun, so I'm kind of glad we went. (Kind of like giving neutropenia a symbolic obscene gesture.)

Kyle's counts are hemoglobin 11.5, Platelets 239K, white count 1,100, and ANC 326. (This is for our growing list of cancer parent friends who know what the heck those numbers mean.) Tomorrow at clinic, he'll skip his IV methotrexate (for the third time) and spend his final visit of interim maintenance getting a spinal tap with intrathecal (adminstered into the spinal fluid) methotrexate and vincristine. Afterward, I'm supposed to give him citrovorum, also known as leukovorin or a folic acid deliverer, to help protect his body from the toxic effects of methotrexate, which have proven to be particularly troublesome for Kyle (and most kids with Down syndrome). I'm also bringing in a stool sample for analysis to try to determine why Kyle is still having trouble on that end (literally). Plus we'll get a weight check. He's been eating a bit better the last couple of days, which could be a result of our latest prayer request: thanks and please keep it up!

Friday, April 16, 2004 1:56 PM CDT

Kyle won't have blood counts until Monday, with chemo scheduled for Tuesday, so there's no real treatment news to report. We'll be anxious to see if his ANC (last week at 550) will recover to the 750 or above needed to get the methotrexate. Even if he can have it, it will be at a reduced dose, in an attempt to not trash his counts for too long, since he's supposed to start delayed intensification the first week of May. He's also scheduled to have a spinal tap next Tuesday.

This week has been somewhat draining, as Kyle continues to deal with intermittent diarhhea/soft bms, and a real lack of appetite and interest in food. He has eaten occasionally, but is refusing Pediasure and often refusing foods after a few bites, often with much drama and crying. He's lost some weight, and is beginning to look a bit POW-like, and is in general kind of low on energy. Of course, my challenge is to not have my weight change in inverse proportions, as the parade of uneaten food that I march by Kyle can be quite the temptation!

We are having lovely weather here in central Indiana, so Kyle is finally able to get outside a bit. Also, he's been selected by Suite Dreams for a bedroom makeover, which will be happening mostly in May. We are grateful. If you'd like a prayer concern, please focus on Kyle being able to eat and get his weight up, so he can handle the treatments he needs. Thanks!

Monday, April 12, 2004 3:37 PM CDT

Kyle's clinic visit Friday was uneventful, with just a quick dose of vincristine, since he was skipping the methotrexate due to low counts. His weight was neither up nor down. But he developed a particularly nasty run of diarrhea (I'll spare you the details) Friday through Sunday, that continues but is getting better now. For a while he was very droopy and sick, refusing food but fortunately accepting limited liquids. We believe he is getting better now, starting to eat a little, and having much more, but still not normal, amounts of energy. Still seems to be a good sign after a kind of concerning weekend. On Friday, we also discovered lice on our older boys (our first time for this experience), which we have successfully beat down now. However, a Good Friday evening with our arms elbow deep in diarrhea and lice gave us more than we bargained for in terms of entering into suffering, but actually still makes us laugh at the thought of it. (Face it, sometimes, all you can do is laugh.) So, aren't you all anxious to visit us now? (:

Thursday, April 8, 2004 3:15 PM CDT

Kyle's white counts and ANC haven't recovered after skipping methotrexate last week. His ANC is 550 (it was 650 last week). So, tomorrow, he'll again skip his spinal tap and LP methotrexate and just receive vincristine, which won't affect the counts, I'm told. On April 20, his last visit for interim maintenance, they'll give him a spinal tap and a reduced dose of methotrexate, if his counts are high enough. The main goal is to keep him strong and get his counts up so he can begin and tolerate the delayed intensifification phase, which should begin in early May and is just like it sounds -- intense. We'll see how Kyle's weight is doing tomorrow, but his blood sugar is normal now, though protein is still low. He began taking Pediasure last weekend, and isn't drinking much, but still getting some via sips and oatmeal, etc., so that should help. I find it kind of neat that his blood counts and clinic treatment this week are Maundy Thursday and Good Friday, allowing us to experience a tiny amount of suffering these holy days to enjoy the full joy and hope of our risen Lord on Easter Sunday. Have a great Easter!!

Wednesday, March 31, 2004 1:54 PM CST

Kyle and family were able to get out of town for the first time since his diagnosis last October, to visit lovely northern Indiana for visits with his grandmas, aunt and cousins, and friends! We had a nice visit and were grateful for the break. We are also grateful that Kyle's cold is improving! On to the news. Yesterday, Kyle's blood counts showed that his white counts and, correspondingly, his ANC is dipping, indicating that the methotrexate is causing toxicity after the first increase in dose strength. As a result, today, Kyle had to skip the methotrexate and received just 2 chemo drugs, vincristine and L-aspariginase. He is a little neutropenic, but at least he didn't totally bottom out, and the hope is that his counts will bounce up again and he can return to the lower dose of methotrexate. In other news, Kyle's continuing eating problems/unpredictability is causing some weight loss and low protein, albumin and blood sugar. We will be trying Pediasure to help with all of that, with the question of course being whether or not he'll drink it. Nutritional status can affect your ability to tolerate chemo, so it can become a vicious cycle; here's hoping and praying that Kyle will like Pediasure and eat a little better! Thanks for checking in; God bless you!

Wednesday, March 24, 2004 4:47 PM CST

Kyle received his chemo last Friday without incident. His counts were still doing well, so the methotrexate was increased. The next scheduled chemo is Wed. 3/31. Kyle's port is quite loose, but still hanging in there (literally). His cold is pretty bad now, but no fever or breathing difficulties, thankfully. So, we enjoy each day as it comes, but admittedly with some trepidation, as both the port and the cold seem to skirt along the edge of becoming more troublesome. Your prayers and well wishes are SO appreciated, and we continue to feel wrapped in the love of God, family, friends and even total strangers. Have a blessed day!

Thursday, March 18, 2004 10:30 AM CST

Hi! Well, Kyle was in for counts and to check his port, and it is working fine. (See Monday's post if you don't know what I'm referring to.) No problems getting blood out or saline in, so we're good to go without surgery for now. It is looser than in the past and more movable, so there's still a good chance it will run into some problems and need some repair or replacement, but all's fine for now, and in the one day at a time philosophy that we've come to embrace, that's good enough. He will have chemo tomorrow, Friday, but it will be brief. Thanks for your prayers. Kyle is quite tired and fussy and seems to be getting a cold, so we appreciate your continued prayers for his comfort, healing, safety and joy. God bless you!

Monday, March 15, 2004 1:11 PM CST

Hi! No, it's not a normal clinic day, so yes, there's a bit of news. Kyle's port looked funny and protruding, stretching his skin, Friday, but the nurse said via phone that if it wasn't bothering him and wasn't red/purple, it should be okay to wait and check it the next clinic day (this Fri). Today, I took him in anyway, and it wasn't what they pictured, and said it looked bad and very strange. Just as we were about to Xray it, the surgeon came by to check it, and he said the port was flipped upside down and flipped it over manually, and left. So we hung around to talk to his oncologists, who hadn't seen this happen before (leave it to Kyle to find new things to challenge doctors with), but the consensus was that it's probably fine, that the tubes could be kinked and thus blocked but didn't seem to be, and that it very well may happen again and we may have to surgically repair or replace it, but that we'll wait and see what happens. On Thurs., we are now going to the clinic for his blood draw instead of having it done at home, so they can check it out. If all goes well then, chemo is still scheduled for Friday. In the meantime, we are keeping our eyes peeled on that port!

Tuesday, March 9, 2004 1:17 PM CST

Kyle is finally back into treatment! His ANC Monday was 1300, well over the required 1000. Today, Tuesday, he was at the clinic for three hours receiving methotrexate and vincristine, two PEG shots, and a spinal tap. Things went fine, but wore him out, and he is still asleep this Tues. afternoon at home. This 8 week phase involves all the above drugs given at various intervals, at the clinic every 10 days, with the dosage of the methotrexate increasing about 20 percent each time, until his counts take a dive, meaning he's reached a maxed level of toxicity, at which point they continue the treatment but no longer increase it. This dosage increase, I'm told, has been shown to increase survival rates by about 5 percent, so here we go. His treatments are about every 10 days, so the next blood count will be March 18 with clinic on Friday, March 19. His nurse practitioner said it's amazing that the last two times that Kyle has been so neutropenic (low ANC, low/no immunity), he has not gotten sick, and she said he must have a guardian angel. Personally, I think he has several of them, including all of you who check his website and keep him in your prayers. Thanks so much!

Monday, March 1, 2004 1:40 PM CST

Hello. Kyle continues the slow climb back to an ANC that will allow him to begin chemo again. This count today is 598. The good news is, that's high enough to allow him to venture out to stores, church, etc., which will perk up his life and ease ours! It's not high enough to start chemo, though, so we continue to wait; expectations are that he'll start next Tues., if counts are what we expect next Mon. He is feeling very well, though, and is quite the happy guy. His latest feat is saying, "I did it!" whenever he accomplishes something. I was especially impressed by his correct pronoun usage, since all he's ever heard is "you did it." Anyway, I've found that the next phase of chemo starts with a spinal tap, methotrexate and vincristine, with a PEG shot the next day. From then on, he'll receive slowly increasing amounts of vincristine/methotrexate (depending on his counts) every 10 days for 60 days. That will be the fewest clinic visits since we started, and a nice "break" (if you can call it that) before the dreaded delayed intensification phase, which comes after this one. Thanks for checking in; more news next week, unless something comes up. Have a great week!

Monday, February 23, 2004 2:55 PM CST

Kyle's blood draw was today, and his counts are a mixed bag. Good news is that his hemoglobin, which was borderline low last week, is up to 9 today, so he's making his own red cells again. Other counts are fine, except his ANC is still low at 102, so he's still neutropenic and homebound. Next blood count is next Monday, if all goes as planned. Wednesday, he has an early AM appointment (to avoid germ-infested crowds) to get his new glasses fitted!

Tuesday, February 17, 2004 12:29 AM CST

Today, Kyle proves again that everything about him is special but not much of anything is "normal." Last week, his counts were all up and he was past the point where the last dose of cytoxan usually slams the counts, so all normal expectations were that his counts would remain up and he would sail through into the next phase of treatment and possibly be able to return to school. Today, lab tests showed his white counts are way down and he is again "severely neutropenic" with an ANC of 45, which means he again has nearly no ability to fight infection. He's feeling fine as of now, though, and very cheerful, so let's just hope he stays that way, and that his virus-laden Daddy gets well before Kyle gets sick. Mommy, meanwhile, is off to the urologist tomorrow to see about a kidney stone that's proving nearly as stubborn as Kyle's ANC. Despite all this, things are sailing along reasonably well, and we retain a joy only attributable to Jesus Christ, since it makes no rational, human sense. May your day be filled with His joy, too!

Tuesday, February 10, 2004 12:38 AM CST

I'm so happy to be able to report good news today! Kyle's counts are all up. After his red blood cell and platelet transfusions last week, his hemoglobin is respectable and his platelets are up to a point that looks like he's making his own! His ANC is 1,800, which means he's free to go out in the world. In fact, we may be able to let him go to school for a while! This completes month 3 of treatment as well as completes "consolidation." He'll have blood counts drawn next Tues. and the following Mon., and start the next phase Feb. 24 if his counts continue to be good. Next up is two months of "interim maintenance," which is easier to take and is meant to just hold him where he is. We have reason for hope that it should be a less stressful couple of months for him! After that comes the dreaded "delayed intensification," but we'll deal with that when the time comes. Kyle's counts are of course a bit unpredictable, but for the first time in a long while, we can perhaps take more than a day at a time; maybe even a whole week at a time! Thanks for your continued prayers!

Wednesday, February 4, 2004 1:31 PM CST

Whew. It's been a busy couple of days. Kyle had a short chemo visit scheduled for Tuesday, but he also needed transfusions of red blood cells and platelets. His hemoglobin level was only 4.5! He had an almost 7-hour day in the clinic, including platelets transfused over 90 minutes and red blood cells transfused over several hours. Kyle seemed very ill shortly after returning home from the clinic. He developed a fever, redness in the face and eyes, shortness of breath, and malaise, and wasn't peeing. After a couple of hours of this with no improvement, I took him to the ER in the evening, but by the time I got there, he had peed and was feeling much better. Apparently his body was overloaded by all the blood product fluids, and it temporarily overwhelmed his kidneys, but it resolved on its own. So he's fine as of now, thankfully. His ANC is 750, so not quite neutropenic, but steadily on its way down. (It was 1,500 last week.) All of these count problems are due to the chemo. I've been told Kyle has about a 50/50 chance of getting sick enough in the next week or two to develop a high fever and thus require hospitalization/IV antibiotics. So we'll just see how it goes. Then, today, we went to the opthalmologist to see about Kyle's strabismus (eyes crossing and going other directions). He indeed has that, and the first step to try to correct it is glasses. So, they're on order. He looks really cute in them; hope he'll leave them on! There's about a 70-80% chance (sound familiar?) that glasses will correct it without surgery needed, but they wouldn't do surgery, if needed, while he's in leukemia treatment. So, that's it. Sorry for the length. I told you mundane and ordinary was better!

Tuesday, January 27, 2004 1:37 PM CST

Kyle had his regular Tues. clinic visit, and is doing well. Only problems are that his hemoglobin and platelets are taking a dive, so they tell us to expect him to need both transfused next Tuesday, and we should plan for a longer day. But he's still feeling well. His ANC is still up (1,700), but his white count is down, so I would expect his ANC will follow before too long, but that's just me conjecturing. The rest of the family is enjoying a snow day off from school today, along with most of the city's kids and teachers. We don't have much news to report here, but among the many things this experience has taught us is to embrace the mundane and ordinary: within them are many blessings!

Wednesday, January 21, 2004 9:40 AM CST

Kyle's full day of chemo and IV fluids went well yesterday. He did fine and remained in good spirits through it all. Nausea, if it happens, will hit today, but we have that really good, really expensive Zofran handy to fight nausea, so things should be fine. He's back to two weeks of oral and IV push chemo drugs at home, administered by Nurse Mommy. This is his second month of consolidation. Apparently his intro period is seven months, not six (two months of consolidation, not one), plus the delays inbetween phases if his counts are low, which probably means he won't be entering maintenance therapy until July or August. Now, enough medical mumbo jumbo. The most exciting news of Tues. was a visit to the clinic by the Indianapolis Ice and their mascot. Kyle was intrigued, and he even made (very briefly) the evening news on Channel 6! On Saturday we'll attend the St. Vincent Childrens Hospital one-year birthday party, which should be fun for the kids and may be on the news, too. Have a great week!

Monday, January 19, 2004 2:32 PM CST

Kyle is feeling much better and his counts as of today look great. His ANC is 1,500. He'll be having his cytoxan and IVs all day Tues. to start this, his third month of treatment. The three weeks off have left him perky and strong, ready to face the nastiest drug in the chemo arsenal tomorrow and then a month of other chemo drugs that are much the same as last time. This will mean weekly clinic visits on Tuesdays, and chemo at home, both oral and IV push, as well. I will try to update you every Tues. or Wed., and we so appreciate your continued concern and prayers.

Monday, January 12, 2004 1:30 PM CST

Kyle had an adventurous weekend. After his nonresponsiveness Friday morning due to dehydration, he responded well to IV fluid that he had Friday and overnight to Sat. morning. Saturday night we had some problems with his pump but all was well until he turned around enough in his bed to pull on the tubing and pop his portacath needle out, which meant the only thing the IV was hydrating was Kyle's pajamas, which were effectively soaked. We then gave up on the IVs, assuming Kyle knew better than us, and he did. He's doing fine and is adequately hydrated even today, Monday. Kyle seems to have a knack for removing medical equipment when it's no longer needed. His first week in the hospital, he removed his own breathing tube in the PICU and later removed his own IV, both times just a few hours before the staff thought they would be able to remove it. Perhaps he has a future in medicine. Today, his blood counts show he's fine except still neutropenic. His ANC is 154, quite a ways from the 750 required to start the next phase of chemo. So we wait another week and go back in next Monday for more counts. His virus seems to be improving, so we pray for an uneventful week, and will keep you posted next Monday, unless news occurs before that.

Friday, January 9, 2004 3:58 PM CST

Kyle continues to battle his virus and has a new weapon. He is finding it hard to eat or especially drink much, and became dehydrated, so he is receiving IV fluids/sugars at home about 10-12 hours per eve/night as of today. So far his fevers have not been too high, so he remains at home. He'll be in to the clinic Monday for blood counts, so I'll update with more info then. Have a great weekend!

Monday, January 5, 2004 12:22 AM CST

Good news is great: Kyle made it through all the parties for his birthday, Christmas and New Years Eve. We are very thankful. He continues to battle a virus, however, and his ANC count today is 0, as in nada, zip, etc. We now wait for his counts to recover and pray that the virus doesn't turn into a bacterial infection. Barring any other development, we will recheck his counts next Monday 1/12.

Tuesday, December 30, 2003 8:05 PM CST

Sorry that Christmas has prevented us from frequent updates. The best news is that Kyle was able to be home for Christmas! We are so thankful. Our families visited over the Christmas weekend. Kyle had a good time and even was able to attend Christmas Eve service at church. By the end of the weekend, though, Kyle developed a virus that robbed him of interest in food or drink and gave him a low-grade temp. Monday, he received IVs for fluid to combat dehydration, and a blood count that showed his hemoglobin was down to 7. Today, Tues, he received his regular chemo plus a packed red cell transfusion, his second in a week. He is eating and drinking a little bit, but his fever was up a bit tonight, with major fatigue today, and diarrhea before bed. His care providers feel it's a virus, so we hope he can fight it off and remain home. His ANC is down to 600, which is a big drop but is not quite neutropenic. Next week he gets blood counts Mon., and if they're high enough (a big if) will start the next phase of chemo Tues. We hope you had a blessed Christmas and will have a wonderful new year, and we'll be back to more frequent updates now.

Thursday, December 18, 2003 3:40 PM CST

It's been a busy week. Kyle had his clinic chemo/spinal tap/counts Tuesday. His ANC was way up over 9,000! That was quite unexpected. His hemoglobin was down to 8.1. The home care nurse redrew blood today, and today's counts are hemoglobin 7.5, which means he gets a transfusion tomorrow in the clinic. His ANC is around 5,000, which is still plenty high enough to go to his benefit concert Friday! Thanks for the prayers. His ANC should be dropping quite a bit now, so you're helping. It will drop, but if it can stay up and he can stay well, he can be home for the holidays! I'm giving him oral and IV push chemo at home, which caused fevers and nausea last week. This week, new fever meds and more nausea meds are helping. Info on his concert this Friday is above. Thanks!

Monday, December 15, 2003 9:55 AM CST

Kyle had a nice 4th birthday. With his ANCs up last Tues., he was able to get out a bit, including a visit to preschool Thurs., a Christmas/Kyle birthday party Sat., and church (but not the playroom) Sunday. He had a great time getting out for the first time since Oct.! He has been plagued by pretty high evening fevers, which we believe is a reaction to his ARA-C chemo, as well as some nausea/gagging and loss of appetite. Nevertheless, we have been glad to have him mobile, even temporarily, and have made the best of it! Our next visit is tomorrow, Tues., for a spinal tap and two chemo drugs, with more ARA-C at home the rest of the week, plus another oral chemo drug we've also been giving him at home. This week should be the last for ARA-C and the other drug, at least for Dec. We will also check at the clinic tomorrow how his blood counts are reacting. Thanks for checking in!

Tuesday, December 9, 2003 11:33 PM CST

Kyle had a full day of chemo and IVs, plus a spinal tap, today, Tues. Weekly spinal taps this month make sure his central nervous system is free of leukemia, sparing him cranial radiation, unless he needs it. He got the nastiest drugs today, but antinausea meds are a wonderful thing, and he wasn't at all sick. Home care nurse comes tomorrow to teach me how to administer an IV push chemo drug at home, further enhancing my neophyte nursing skills. It was a long, full day, but fortunately only one of those all-day visits per month is needed (for cytoxan), and the rest of Dec. should be shorter weekly visits for chemo and spinal taps. The downside is that these drugs will plummet his white count to its lowest just before Christmas, which puts him at a high risk for infection and thus hospitalization just in time for Christmas Eve and Day. If you'd like another prayer focus, pray "Keep Kyle Home for Christmas." Thanks! In the meantime, he should enjoy a weekend of decent counts for his fourth birthday this Sat., 12-13!

Monday, December 8, 2003 1:29 PM CST

Hooray! Kyle's ANC is up to 1,760: the highest ever since he started treatment!! Great news. We celebrated by running an errand (also his first since treatment started) and getting McDonalds french fries, his current food fetish. This high ANC means he can move into the consolidation phase of chemo, and that will be tomorrow, Tues. We will be there all day. He'll get three chemo drugs and a couple to prevent side effects, plus an all day IV to hydrate him, which prevents bladder damage, as I understand it. He'll also have a spinal tap (a weekly feature of the consolidation month). This should be the most intense day of the month, with less time-consuming weekly treatment visits to follow the rest of the month. He finished his prednisone yesterday, and with his ANC up will no longer require IV antibiotics!

Friday, December 5, 2003 9:51 AM CST

Kyle's ANC is moving up but not as much as hoped. It's at 360, so he's still neutropenic, homebound and on IV antibiotics. Chemo has been delayed; his ANC has to be at least 750 or 1,000 (getting some conflicting info about that) to start the next round of chemo. He goes back for more blood counts Monday morning. On the good news front, Kyle is regaining some strength during this break from chemo. Have a great weekend!

Tuesday, December 2, 2003 3:29 PM CST

Great news! Kyle had his bone marrow aspiration and spinal tap Monday, and this afternoon we were told he is just where he should be, with no leukemia cells visible in the marrow! This is called remission, which is kind of a misnomer, because if they stopped treatment now it would all come back, because apparently there's always some leukemia cells lurking around and not visible at this point. So he still will have the full chemo schedule, but as of now things are going as they should! The chemo really knocked out his white cells, but all is building. His ANC was just 96 yesterday, so he's still on IV antibiotics and homebound, but he had some precursor cells present that would indicate that his ANC should be climbing. We're retesting that Thurs. If his ANC is at least 750, he can move to the next phase of chemo, which has been moved to next Monday rather than this Friday as of now. This will be a full day of chemo. I'll know more after Thursday. We sing praises to God that he has come so far so quickly, thank you for your prayers, and will need them for some time to come. It remains a long road but still with plenty of reason for hope. Go Kyle!

Wednesday, November 26, 2003 1:09 PM CST

Hi. Kyle had his blood counts today. His hemoglobin and platelets are doing well, but his ANC (annoying, I mean absolute, neutrophil count)is down to 24. This wasn't expected, but I'm told is not cause for concern. The biggest thing is that he is making his own platelets and hemoglobin, which indicates his marrow is functioning. Nevertheless, the low ANC means he is still at risk of infection and still needs to have IV antibiotics at home and be pretty much homebound. He also needs his ANC to be at least 750 by Fri. 12/5 to enter his next phase of chemo, but I'm also told that if his next phase is delayed, that is also nothing to worry about. (Easy for them to say.) His bone marrow aspiration/spinal tap has been changed to Monday, and that will tell us if he is in "remission." That doesn't mean the leukemia is gone, but just that it's not visible and is responding as expected. Treatment goes on after that. So we'll keep you posted. Also, in a rush of techno awareness, I both figured out how to add Kyle's photo to his page and discovered his guestbook. Thanks so much to all of you who have visited and signed. That's so neat. Have a happy thanksgiving! We are thankful for you.

Saturday, November 22, 2003 7:37 PM CST

Hi. Busy weekend. Just an update on Kyle's clinic visit Friday. He received his last L-aspariginase/daunomycin/vincristine chemo combo of his induction month. His counts were fine except his ANC, which was still only 231. They had hoped it would be around 500. So, he's still on IV antibiotics at home, but that's going fine. He is homebound but glad to be home, and he tolerates Mommy doing IVs much better than the parade of nice but nevertheless new nurses parading in and out of his hospital room. Next blood count check is Wed. before Thanksgiving. Real news on progress of treatment will come Tues. 12/2, when he has his next bone marrow aspiration to check for leukemia cells. We may not have any more news til Wed. for the website, but to coin a phrase, no news is good news! Keep praying, please. Thanks so much!

Thursday, November 20, 2003 1:39 PM CST

We're home! Kyle was released from the hospital yesterday. His ANC was up to 240! This is still very low, but high enough to come home with IV antibiotics (to help prevent infection). So now I, Beth, am playing nurse and adminstering IV antibiotics over about 40 minutes three times a day. It's good to be home. If his counts are up to 500 Friday when he goes to the clinic for chemo, he can go off the IV antibiotics; if not, he'll stay on. Kyle is feeling pretty well but is still very tired. He's also constantly hungry and having some trouble with sleeping due to the prednisone he's on, but he'll be off that by mid December. He continues to be homebound other than treatment visits. But all is much better now that we're HOME!

Monday, November 17, 2003 3:21 PM CST

Hi! Kyle is feeling better this Monday, after feeling poorly last week thru Sat. He had a hemoglobin transfusion Sunday and platelets today. His ANC count is 22 today. No fever, no bacteria, so we're just waiting to reach and hold that 200 ANC number. He is still very tired, but had fun with therapists today. He has consumed an enormous amount of Saltine crackers, which we've found to be a great motivational tool. He even learned the sign for cracker today and used his first 2-sign phrases: "more cracker" and "eat cracker." Life in the hospital sucks, but we're making the best of it, with several small but extraordinary blessings along the way. Will have no real news on his leukemia response until the end of the month; right now, it's all about his blood counts and getting that ANC up despite continuing chemotherapy.

Sunday, November 16, 2003 12:03 AM CST

Hi. Kyle continues to be in the hospital. His ANC count, which is that # that indicates his ability to fight infection, is still 0, but we're told that's to be expected at this stage. He is very tired and pretty puny, but he's getting a hemoglobin transfusion today, Sunday, so perhaps that will help. He had his regular 3-dose chemo Fri. and did fine. Treatments continue in the hospital just as they would have in inpatient. If you'd like to reach us in St. Vincent Children's Hospital, we're at 317-338-0126. I also have email access there.

Thursday, November 13, 2003 3:48 PM CST

Hi, all. Bigger news than we wanted: Kyle is in the hospital. He is doing pretty well, but last night developed a fever. At 101.5, we had to go in for IV antibiotics. His fever is down and he doesn't have anything really scary like sepsis, just a garden variety infection. However, because his white counts are so low, he has ZERO bacteria-fighting white cells, and he is picking up infection easily, he has to stay in the hospital until his blood cultures are clear, fever is gone, and the white count is up. The first two should be easy, but the third should take a while. His estimated length of stay at this point is 10-14 days. You can reach us in his room at 317-338-0126, or send an email (we have access) or just leave a message at home, if you need/want to reach us. He's at St. Vincent Children's Hospital. Thanks for your prayers!

Wednesday, November 12, 2003 1:51 PM CST

Kyle's platelet count was 12,000 today (quite low), so he had a transfusion. His ANC (infection fighting) count is still 0. All this is normal, I'm told, for this stage of treatment. He had a fever during the transfusion, but it went away. He's very tired. While we were there, he started losing hair and eyelashes, so that's starting, though he still has plenty to go. By the time he was home, the falling hair was sticking to his face and itching, so in a moment I never could have imagined, I tenderly combed out his dying, itchy hair so it wouldn't bother him so much. As I just wrote to a friend, Kyle continues to teach me, more than I might have wanted to know, about the limitless love of Christ. Thanks for your prayers; more updates after Friday's chemo. No bone marrow aspiration or spinal taps scheduled until the end of the month, though.

Tuesday, November 11, 2003 2:24 PM CST

This page has just been created. Please check back for additional updates. I'll try to update it every Friday (our busiest treatment day), or more often if there is news.

Yesterday, Kyle was diagnosed with an infection in his portacath site, which is a surgically implanted port where he receives all IVs, blood transfusions, blood draws, etc. He also has an ANC count of 0. The ANC count tells you how well he can fight infection, and anything under 500 (or 750, depending on who you ask) is considered neutropenic, meaning he can't fight infection. An ANC of 0 means he has absolutely no ability to fight bacteria on his own. But the good news is that so far, the oral antibiotics seem to be working, so we hope and pray that will continue so he won't have to be readmitted to the hospital for IV antibiotic treatment.

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